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COURSE OBJECTIVE: The purpose of this course is to provide healthcare professionals with an overview of end-of-life care.
Upon completion of this course, you will be able to:
- Discuss the current status of end-of-life care in the United States.
- Differentiate between palliative care and hospice care.
- Explain the principles and ethical challenges of end-of-life care and hospice.
- Discuss the essential elements of effective communication with patient and family.
- List pharmacologic and nonpharmacologic comfort measures for the dying patient.
- Identify the psychological and emotional needs of the patient and family.
- Describe the special needs of the terminal patient with cancer, dementia, and HIV/AIDS.
- Discuss the needs of terminal children and their parents.
- Describe care of the patient during the last hours of life.
- Explain the steps in postmortem care.
TABLE OF CONTENTS
THE NEED FOR END-OF-LIFE CARE
The Burden of Chronic Illness
According to the Agency for Healthcare Research and Quality (2012), three quarters of Americans over age 65 have two or more chronic illnesses. Seventy-five percent of all healthcare funding pays for the treatment of chronic diseases (CDC, 2013b). Seventy percent of all deaths among Americans are from chronic diseases (CDC, 2012a).
The graying of the Baby Boom generation (ages 49 to 67 in 2013) threatens to intensify this burden of chronic illness. The oldest baby boomers turned 65, and the older population of the United States is beginning to increase. According to a recent report from the U.S. Department of Health and Human Services Administration on Aging (2012), the age-65-and-older population reached 41.4 million in 2011, comprising 13.3% of the total population. One new study found that Baby Boomers are living longer than people roughly 20 years older but that they are not healthier. They are less likely to smoke, have emphysema, or heart disease; but they are more likely to be obese or have diabetes or high blood pressure than the previous generation.
|Source: CDC, 2013a.|
|Causing Difficulty with Physical Function||
|Causing Them to Need Help with Daily Activities or Personal Care
(Instrumental activities of daily living
or activities of daily living)
The burden of chronic illness and the ongoing epidemics of cancer and HIV/AIDS point to an exponential escalation in the demand for palliative care over the next several decades. By 2030, 1 in 5 Americans will be over age 65 (U.S. Census Bureau, 2010). Experts are concerned that there will be too few physicians and nurses certified in palliative care to meet the needs of this aging cohort.
Boomers make up a significant part of the healthcare workforce as well. Nearly 40% of doctors are age 55 or older. By 2016, the average age of registered nurses will be 44.9 years. Nurses in their fifties will be the largest segment of the nursing population (Kirgan & Golembeski, 2010). When these health professionals retire, the shortage will worsen.
Each year more than 2.5 million people die in the United States, and by 2040, the annual number of deaths will reach 4 million. Ten percent die suddenly in an accident or from a fatal heart attack or stroke. However, most people require care over weeks or months as their health diminishes. On average, Americans with chronic illness will need help with routine activities of daily living for two or more of their final years of life.
TOP FIFTEEN CAUSES OF DEATH IN THE UNITED STATES
- Diseases of the heart
- Malignant neoplasms
- Chronic lower respiratory diseases
- Cerebrovascular diseases
- Accidents (unintentional injuries)
- Alzheimer’s disease
- Diabetes mellitus
- Influenza and pneumonia
- Nephritis, nephrotic syndrome, and nephrosis
- Intentional self-harm (suicide)
- Chronic liver disease and cirrhosis
- Essential hypertension and hypertensive renal disease
- Parkinson’s disease
- Pneumonitis due to solids and liquids
Source: Hoyert & Xu, 2012.
Nine out of 10 Americans would prefer to be cared for and die at home, but only 4 out of 10 do. One third of Americans die in hospitals and one fourth die in nursing homes. Far too many die in pain; 46% of Americans experience significant pain in the last month of life (Smith et al., 2010).
Dying in hospitals not only increases the cost of care but often subjects patients to uncomfortable and unnecessary procedures. For example, increasing numbers of elderly patients are being admitted to intensive care units, where they require ventilator assistance, aggressive treatment for sepsis, suctioning, catheterization, more frequent monitoring and interventions, and an upsurge in diagnostic tests (Casey & Balas, 2011).
Lack of Knowledge about End-of-Life Care
The French think death is inevitable. The English think it’s imminent. The Americans think it’s optional.
—Jane Walmsey (Brit-think, Ameri-think, 2003)
Americans are reluctant to talk about death or to express their wishes about end-of-life care. According to the National Hospice and Palliative Care Organization (NHPCO, 2010), fewer than one third of Americans express in writing their wishes about how they want to be cared for at the end of life. Fewer still have not thought about end-of-life care at all, while some have thought about it but not told anyone what they want.
Avoiding the subject of death has created woeful ignorance about end-of-life issues, resulting in less than optimum care and diminished quality of life for the dying and for their families. Research by NHPCO showed that 75% of Americans do not know that hospice care can be provided in the home (2010). Ninety percent do not realize that the Medicare hospice benefit, instituted in 1983, guarantees comprehensive high-quality care at little or no cost to terminally ill Medicare beneficiaries and their families.
Many people think hospice care means “giving up,” that it will shorten survival. Patients, families, and some physicians believe that trading aggressive treatment of potentially fatal conditions for improved quality of life may decrease patients’ lifespans (Dahlin et al., 2010). In a randomized controlled trial of the effects of early palliative care, Temel and colleagues (2010) detected a 30% increase in lifespan over those patients not receiving palliative care. Such results replicate previous studies showing extended life as a result of early palliative care improving quality of life (Dahlin et al., 2010).
To educate the public about the need to plan for end-of-life care, in 2009 healthcare reform advocates drafted a provision for Medicare reimbursement for physician-patient discussions of advance directives. Opponents of healthcare reform and sympathetic media labeled this badly needed patient education as “death panels,” effectively killing the measure. As Kettl (2010) wrote, “[T]he concept of physicians being paid for time to talk with patients and their families about advance directives somehow generated into the fear of decisions about life and death being controlled by the government.”
Trends in End-of-Life Care
In our death-denying culture, both the public and health professionals tend to regard death as a failure of the medical system rather than a normal stage of life. This view is a modern phenomenon, however. Before the advent of modern hospitals, antibiotics, vaccines, and life-sustaining technologies, death came quickly after an accident or serious illness. Families cared for the dying at home, including preparation of the body for burial, a function now performed by the funeral industry.
In more recent years, death began to emerge from the closet when the first modern hospice opened in England in 1967. Dame Cicely Saunders, educated first as a nurse and then as a physician, is considered the founder of the modern hospice movement. The first hospice in the United States, the Connecticut Hospice, Inc., initiated in-home services in 1974.
Elizabeth Kübler-Ross pioneered multidisciplinary seminars on death and dying. Her now-classic book On Death and Dying found a ready audience among professionals as well as the public. Healthcare curricula slowly began to change, first in nursing and later in medicine, to include content on care of the dying.
Evidence that end-of-life care is changing in the United States includes:
- The number of hospice programs has grown to nearly 5,000, and most are certified by Medicare. Hospice is increasingly available in nursing homes and hospitals.
- Hospice care is available in all 50 states, the District of Columbia, Puerto Rico, Guam and the U.S. Virgin Islands.
- More people are choosing hospice care: In 2011, more than 1.65 million people received services from hospice, representing 44.6% of all deaths in the United States.
- Seven out of 10 hospice patients receive care in a private residence, nursing home, or other residential facility rather than an acute-care hospital or inpatient hospice.
- Hospice services are covered under Medicare and, in 46 states, by Medicaid. The Medicare hospice benefit covered 84.1% of hospice patients in 2011 (NHPCO, 2013b).
- Military personnel and their dependents are covered for hospice care. All U.S. veterans have hospice benefits through the Veterans Administration (VA) (Department of Veterans Affairs, 2010)
Despite some encouraging changes, other significant challenges remain. Hospice services are still not widely used. Fewer than half of patients eligible for hospice choose that option, and the median length of stay in hospice is only 18.7 days, far less than the 60 days considered necessary for people to gain maximum benefit. Approximately one third (35.5%) of dying patients have hospice care for a week or less (NHPCO, 2013a).
A 2009 Center for Medicare and Medicaid Services (CMS) rule initiated a seven-year phase out of the Budget Neutrality Adjustment Factor (BNAF) for calculating the Medicare hospice wage index. This will result in an eventual 4.75% reduction in hospice reimbursements. The ACA will further reduce the Medicare hospice rate formula through a “productivity adjustment factor” that will reduce hospice payments by an additional 15% BNAF each year from 2012–2016 (Cabin, 2011).
Disparities in End-of-Life Care
Where Americans die is determined not only by race/ethnicity and socioeconomic status but also by cultural and spiritual/religious beliefs and by where people live. Access to palliative care and hospice programs varies from state to state and between rural and urban populations.
The most recent statistics show that more than 53 million people live in rural America. People living in rural counties have limited access to hospice and palliative care. Rural residents are more likely to be older, poor, and to have a higher incidence of chronic disease. Factors that determine whether a Medicare-certified hospice is available in rural counties include physician availability and minority composition of the county. Rural residents are more dependent on public health and social support programs, affecting their access to healthcare. Home healthcare and hospice providers in rural areas face pressures as the only provider model to deliver services at the patient’s home. There are the added challenges of distance, weather, geographic features, and gas prices (Franckhauser, 2013).
A nationwide survey of the 3,700 certified hospice programs in the United States revealed wide geographic variation in the prevalence of these programs, from approximately 10 in North Dakota to over 300 in Pennsylvania (NHPCO, 2013a).
|“Grade”||State||Hospitals with Palliative Care Program|
|Source: CAPC, 2011.|
|A: Top performers
(programs in 83% to 100% of hospitals)
|District of Columbia||100%|
|B: On their way
(programs in 61% to 80% of hospitals)
|C: States in the middle
(programs in 42% to 60% of hospitals)
|D: States that need significant improvement
(programs in 28% to 38% of hospitals)
|F: States with little or no access
(programs in 0% to 20% of hospitals)
Disparities between white and non-white populations exist across the spectrum of healthcare, including end-of-life care. One study of Medicare beneficiaries of all race/ethnic groups found that most express a wish to die at home in the event of a terminal illness and not to receive life-prolonging drugs or mechanical ventilation. However, blacks were more likely than Hispanics and non-Hispanic whites to prefer life-prolonging drugs and mechanical ventilation. Both blacks and Hispanics were more likely than whites to prefer spending their last days in the hospital. This study also found that living alone was associated with a preference for dying in the hospital, and blacks were more likely to live alone (AHRQ, 2011).
National statistics studying the use of hospice care by race and ethnicity found that blacks (8.6%) and Hispanics (6.5%) used hospice services significantly less than white patients (81.5%) (NHPCO, 2013a).
Other disparities in end-of-life care include lack of adequate pain care in minority patients and poor management of pain by healthcare practitioners. A review of almost two decades of research revealed “the persistence of racial and ethnic disparities in acute, chronic, cancer, and palliative pain care across the lifespan and treatment settings, with minorities receiving lesser-quality pain care than non-Hispanic whites” (Mossey, 2011).
Other factors contributing to disparities include lack of knowledge about end-of-life care options, mistrust of the healthcare system, and poor communication between clinicians and patients. Hospice care may be perceived as a luxury in some communities, even though Medicare and Medicaid benefits require little out-of-pocket expenditure.
Language differences can lead to misunderstanding and misinformation that affect medical decision-making. For example, hospice translates to hospicio in Spanish, meaning “orphanage” or “place for poor people.” One caregiver told a researcher, “I didn’t know what hospice was. I thought it was a place worse than a hospital” (Kreling et al., 2010).
(Some of these disparities may be related to ethnic, cultural, and spiritual preferences, discussed below under “Cultural Sensitivity.”)
PALLIATIVE CARE AND HOSPICE
Both palliative care and hospice in the United States originally focused on the care of cancer patients, but now both encompass care of patients with other severe illness such as kidney disease or heart disease. Palliative care is a recognized subspecialty by the American Board of Medical Specialties (ABMS).
The word palliative comes from the Latin word palliare, which means “to cloak.” The purpose of palliative care is to hide or cloak the symptoms of the disease to provide the patient with comfort (Economist Intelligence Unit, 2010).
The National Quality Forum (2009) defines palliative care as follows:
Palliative care refers to patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.
Palliative care and hospice care are not the same, however. Palliative care is not limited to end-of-life care. As people are living longer with formerly fatal illnesses, palliative care may be used to keep them comfortable during curative treatments. The goal of palliative care is to relieve the pain, symptoms, and stress of serious illness—whatever the prognosis.
Palliative care’s focus on communication in addition to pain and symptom management occurs long before the end of life. Primary care providers explore their patients’ values and goals in deciding how aggressive to be in treating diseases such as cancer and caring for the patient during treatment. Patients facing serious illness, such as HIV/AIDS, may live for years. This is why palliative care is necessary for patients with chronic illnesses who want to remain in control of their lives (Ballantyne, 2012).
Unfortunately, referrals to palliative care tend to occur late in the trajectory of illness. This may be related to the misperception of palliative care as synonymous with hospice or end-of-life care. The term palliative care may evoke the negative connotations linked to cancer and terminal illness, and palliative care is not routinely included in nursing curricula. Palliative care has, however, progressed from a community-based, hospice movement into a multidisciplinary, inpatient model in hospitals, and medical students, residents, fellows, and oncologists are now mandated to receive palliative care training. Ten percent of the questions on the certification examination for medical oncology focus on palliative care knowledge (Ramchandran & van Roenn, 2013).
As an alternative to the term palliative care, the National Cancer Institute (NCI) defines supportive care as care given to improve the quality of life of patients with a serious or life-threatening disease. The goal of supportive care is to prevent or treat as early as possible the symptoms of the disease; treatment side effects; and psychological, social, and spiritual problems related to the disease or its treatment (NCI, 2010a).
Palliative care for those with life-limiting illness ideally begins at the time of diagnosis. Many people who do not fear death do fear the process of dying, the prospect of pain and suffering, and being a burden to their families. Research by the NHPCO (2010) shows that the top priorities for a loved one with terminal illness are:
- Someone to be sure that the patient’s wishes are honored
- Choice among the types of services the patient can receive
- Pain control tailored to the patient’s wishes
- Emotional support for the patient and family
In today’s world, the word family can have more than one definition. In the context of palliative care, the National Consensus Project (2013) agreed that,
The family is defined by the patient or, in the case of minors or those without decision-making capacity, by their surrogates. In this context, family members may be related or unrelated to the patient; they are individuals who provide support and with whom the patient has a significant relationship. The care plan is determined by the goals and preferences of the patient and family with support and guidance in decision-making from the healthcare team.
All the above-mentioned priorities are available in hospice care, which is a delivery system for palliative care services. Hospice is considered the gold standard for end-of-life care. The central belief of hospice is that each person is entitled to a pain-free death with dignity and that families are entitled to the support necessary to allow that to happen.
Hospice care is based on an interdisciplinary team approach that includes physicians, nurses, spiritual counselors, social workers, home health aides, bereavement counselors, trained volunteers, and speech, physical, and occupational therapists, if needed. The team develops an individualized care plan to meet each patient’s needs for pain management and symptom control. When the patient is cared for at home, hospice staff is on-call 24 hours a day, 7 days a week (Torpy et al., 2012).
Many people mistakenly think that hospice refers to a place. Although there are some residential hospice facilities, most hospice care takes place in the patient’s home or the home of a loved one, and less frequently in hospitals and nursing homes.
Hospice care is far less expensive than other types of end-of-life care (e.g., aggressive chemotherapy). Hospice patients are more often able to die at home. According to the National Hospice and Palliative Care Association, three fourths of the people who choose hospice care die at home, in a nursing home, or other residential facility (NHPCO, 2013b).
SERVICES DELIVERED BY A HOSPICE MULTIDISCIPLINARY TEAM
- Manage the patient’s pain and symptoms
- Assist the patient with the emotional, psychosocial, and spiritual aspects of dying
- Provide needed drugs, medical supplies, and equipment
- Instruct the family on how to care for the patient
- Deliver special services like speech and physical therapy when needed
- Make short-term inpatient care available when pain or symptoms become too difficult to treat at home or the caregiver needs respite
- Provide bereavement care and counseling to surviving family and friends
Source: NHPCO, 2013a.
There are over 5,300 hospice programs in the United States. This estimate includes both primary locations and satellite offices. Hospices are located in all 50 states, the District of Columbia, Puerto Rico, Guam, and the U.S. Virgin Islands. The majority of hospices are freestanding agencies (57.5%). The remaining agencies are part of a hospital system (20.3%), home health agency (16.8%), or nursing home (5.2%) (NHPCO, 2012).
An estimated 8 out of 10 nursing homes have arrangements to provide hospice care. However, nursing home staff and/or families must recognize the need for hospice care. Families should also be aware that nursing homes may have a financial incentive to continue skilled nursing care rather than switching to hospice care.
Hospice is not just for people with cancer. Any patient who is diagnosed with terminal illness is eligible for hospice care. In fact, more than half of those admitted to hospice in 2008 had a non-cancer diagnosis, such as heart disease, kidney disease, emphysema, Alzheimer’s or other dementia, HIV/AIDS, or an unspecified debility.
Forty-four percent of all deaths in 2011 in the United States occurred while under hospice care. The average length of hospice service was 69 days, with the majority of hospice patients seeking hospice care three weeks before death. Participating in hospice care allows dying patients more time to spend with family and loved ones rather than focusing on medical care (NHPCO, 2012).
The Growing Range of Programs
As more Americans choose palliative care, the range of available options is expanding. The number of palliative care programs in hospitals is increasing rapidly. In addition, programs called open-access hospice, bridge hospice, or outpatient palliative care offer patients both comfort/supportive care in their home, nursing home, or assisted living facility plus the opportunity to continue disease treatment, such as chemotherapy and radiation. Patients also have access to an interdisciplinary team of experts to address psychosocial and special care needs. The hope is that these new programs will encourage more patients and their families to enter hospice earlier and avoid the costly final weeks of hospitalization that so many Americans experience at the end of life (NHPCO, 2013a).
Open-access programs are available to those without the ability to pay and are usually available through larger hospice facilities. Smaller agencies, various visiting nurse associations (VNAs), or home health agencies may provide a program of palliative care for terminal patients and their families that are not restricted by the expectation of expiration in six months or the requirement to forego life-prolonging treatments. This kind of program “bridges” the period between hospitalization and aggressive treatment and hospice care at the end of life (VNA, 2013).
Palliative care and support services may be provided at any time during an illness, even from the time of diagnosis. It can take place at the same time as curative treatment. Hospice always provides palliative care; however, hospice is focused on patients who no longer seek treatments to cure them.
Medicare Hospice Benefits
Medicare, Medicaid (in most states), the Department of Veterans Affairs, most private insurance plans, HMOs, and other managed care organizations pay for hospice care. Community contributions, memorial donations, and gifts allow many hospices to give free services to patients who can’t afford payment. Some programs charge patients according to their ability to pay on a sliding scale (ACS, 2013).
According to the Patient Protection and Affordable Care Act (ACA) of 2010, the majority of patients in hospice care are covered by Medicare. The Medicare hospice benefit starts with two periods of 90 days each, then an unlimited number of 60-day periods. To qualify for the first 180 days of hospice care, the patient’s physician and the hospice medical director (also a physician) must see the patient and certify that the patient has less than 6 months to live if the disease runs its normal course. The hospice doctor or nurse practitioner must re-certify the patient in a face-to-face visit before the third period, then again before each benefit period after that (ACS, 2013; Kennedy, 2012).
The patient must agree to forgo disease treatments such as chemotherapy and radiation. This requirement is one reason some people avoid hospice until the last days or weeks of life and continue with aggressive, expensive treatment, which may make little or no difference in survival time and may diminish the quality of life in the process. Medicare offers a one-time only hospice consultation with a hospice medical director or hospice doctor to discuss care options (ACS, 2013).
Hospice agencies receive per diem payments ($151, on average) to manage all care related to a patient’s care. The benefits continue, provided that physicians certify that the patient continues to meet the eligibility requirements. Medicare enforces an aggregate cap for agencies, effectively limiting the total amount they can receive (about $24,500 per beneficiary in 2011) (Stevenson, 2012).
Hospice services covered by Medicare are listed below. (In addition, many private healthcare plans and Medicaid cover hospice services.)
HOSPICE SERVICES COVERED BY MEDICARE
Medicare covers these hospice services and pays nearly all of their costs:
- Doctor services
- Nursing care
- Medical equipment (such as wheelchairs or walkers)
- Medical supplies (such as bandages and catheters)
- Drugs for symptom control and pain relief (patients may need to pay a small copayment)
- Short-term care in the hospital
- Short-term respite care (patients may need to pay a small copayment)
- Home health aide and homemaker services
- Physical and occupational therapy
- Speech therapy
- Social worker services
- Dietary counseling
- Bereavement services for patients and families (up to 13 months after a patient’s death)
- Any other covered Medicare services needed to manage pain and other symptoms, as recommended by the hospice team
All Medicare-certified hospices are required to employ physicians and nurses with special expertise in pain management and symptom relief. Non-pain symptoms include constipation, dyspnea, nausea and vomiting, dry eyes, and dry mouth. Bereavement and spiritual counselors are also available to help the dying and their families explore their needs and preferences as they come to terms with death.
One of the changes to hospice care to emerge from the ACA is an attempt to integrate timely, high-quality palliative and end-of-life care into the continuum of services that Medicare beneficiaries receive. Hospice operates within a coordinated system of care rather than functioning apart from it. One such example is the 15-site concurrent care demonstration project that was authorized by the ACA to allow patients to receive hospice and curative care simultaneously (Stevenson, 2012).
LEGAL AND ETHICAL FACTORS IN END-OF-LIFE CARE
The Right to Die
The laws should allow physicians to assist senior citizens in committing suicide in cases where a person has been diagnosed with an incurable disease and is suffering from constant, persistent pain.
The right-to-die movement in America is gaining public support, indicating widespread dissatisfaction with the quality of end-of-life care. The right-to-die concept includes assisted suicide (also called physician aid in dying [PAD]) and voluntary active euthanasia. In assisted suicide, the healthcare practitioner, usually a physician, provides the means to end life, such as a prescription for a lethal amount of drugs or the drugs themselves, or other measures, by a person who has knowledge of the patient’s intention (ANA, 2001; Lachman, 2010).
Both nurses and physicians are confronted with requests for assistance in dying. However, this practice is legal in only four states. In 1994, Oregon became the first state to pass right-to-die laws. Montana and Washington soon followed (Hendry et al., 2013). In 2013, the Vermont legislature passed a right-to-die law in a close 75–65 vote. The guidelines for practice are very stringent. According to the American Nurses Association (2001) Code of Ethics, “Nurses may not act with the sole intent of ending a patient’s life even though such action may be motivated by compassion, respect for patient autonomy, and quality of life considerations.”
Interviews with families and health professionals suggest several reasons that patients choose to hasten death, including depression, poor social support, and uncontrolled physical symptoms. A study of Oregonians who either requested PAD or contacted a PAD organization found that the most important reasons for requesting PAD were wanting to control the circumstances of death and to die at home; loss of independence; and concerns about future pain, poor quality of life, and inability to care for oneself (Smith et al., 2011).
Gender and ethnicity may also play a role in acceptance of PAD. Mexican-American men (52.7%) were found to be more sympathetic to this controversial form of end-of-life care than Mexican-American women (20.3%) or non-Hispanic white men and women (33.7%).
Healthcare practitioners acknowledge that there is an underground practice of assisted suicide in the United States. Some maintain that the principle of double effect is used to justify what is really assisted suicide. The principle of double effect states that the potential to hasten imminent death is acceptable if it is the unintended consequence of the primary intention to provide comfort and relieve suffering.
Palliative Sedation Therapy (PST)
Palliative sedation therapy (PST) is considered a last-resort option in end-of-life care. The National Hospice and Palliative Care Organization (NHPCO) defines palliative sedation as “the lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable.” In the case of terminally ill patients whose death is imminent (i.e., within 14 days), NHPCO “believes that palliative sedation is an important option to be considered by healthcare practitioners, patients, and families.” Although palliative sedation is a medical treatment, NHPCO recommends that an interdisciplinary team confer about its use in each patient for whom it is being considered (Kirk & Mahon, 2010).
Palliative sedation therapy is controversial. Some opponents have incorrectly equated it with euthanasia. Euthanasia and PST are different in intention (relief of intolerable suffering in PST, killing the patient in euthanasia), in procedure (use of a sedative for symptom control in PST, use of a lethal agent in euthanasia), and in outcome (alleviation of suffering in PST, immediate death in euthanasia).
As pain escalates and becomes more difficult to control, it may be necessary to consider palliative sedation. Palliative sedation is an appropriate method to consider when symptoms are refractory, or not adequately controlled with conventional treatment options. Delirium and/or agitation, refractory dyspnea, and pain are the primary reasons for using palliative sedation.
The role of the nurse in palliative sedation includes the administration of medications, recognizing and notifying healthcare practitioners of refractory symptoms, providing psychosocial support and education to the patient and family, and identifying culturally specific needs related to dying and death. Close monitoring of a patient’s comfort levels and occurrence of adverse effects, such as increased agitation, is an important component of the nursing assessment. Documentation of all identified symptoms, response to treatment, patient’s wishes, and other support provided to patients and families is essential (Lawson, 2011). Nurses have a responsibility to provide symptom relief and prevent suffering in dying patients (ANA, 2001).
Two types of palliative sedation may be used in end-of-life care: proportionate palliative sedation (PPS) and palliative sedation to unconsciousness (PSU). In PPS, medications such as benzodiazepines are increased gradually together with other symptom-relieving measures until suffering is relieved during both waking and sleeping hours. For most patients, the effect of PPS will be less than total unconsciousness, allowing the patient to rest comfortably but to be aroused. Occasionally, PPS requires sedation to unconsciousness, which is acknowledged as a possible but unintended side effect (Reid et al., 2011).
In PSU, unconsciousness is the intended goal of sedation rather than a side effect. Medications are increased rapidly over minutes and hours to achieve unconsciousness and left at that level until death occurs. PSU is usually administered when the imminently dying patient finds severe physical symptoms intolerable despite state-of-the-art palliative care, for example, in the case of severe refractory bleeding or inability to swallow secretions.
However, controversy surrounds the use of PSU to treat psychological, existential (a loss or interruption of meaning, purpose, or hope in life), or spiritual suffering. Some consider these to be outside the realm of a physician’s expertise, and others consider them within the knowledge, tools, and expertise of the interdisciplinary team. The ethics committee of NHPCO was unable to reach agreement on a recommendation regarding PSU (Kirk & Mahon, 2010).
Health professionals need to understand the difference between the practice of PPS and PSU and the ethical issues surrounding their use. Similarly, patients and families need to understand these last-resort options and make decisions about such end-of-life care before the need arises.
Healthcare practitioners also need to recognize that the patient always has the right to stop unwanted medical treatments or procedures while they are in progress—as was the case prior to consenting. These procedures may include CPR, mechanical ventilation, and artificial nutrition and hydration.
Doris is in the terminal phase of stage IV pancreatic cancer and experiencing severe abdominal pain much of the time. She has been under hospice care and requires proportionate palliative sedation (PPS) to achieve any degree of relief from the pain. It is Doris’s expressed wish that she not be left in intractable pain, and she has named her daughter Sheila in her advance directive to make medical decisions if she is unable. Sheila has been estranged from her mother for seven years but is now at her side most of the time.
The PPS has left Doris comfortable, rousable, but barely coherent. When her mother is unable to answer questions, Sheila asks that the PPS be reduced, stating her mother would want to be able to communicate with family. When the PPS is withdrawn, Doris becomes more lucid but complains of severe abdominal pain and asks for more pain medication. This results in periods of unresponsiveness, causing Sheila to again instruct the nurses to decrease the medication.
Donna is the charge nurse on Doris’s unit and has 20+ years of experience in oncology. She arranges a conference for the following day with the family, including Sheila, the palliative care nurse, the primary physician, and Donna herself. Sheila is encouraged to express her fears of losing her mother and her hope to have time to communicate with her first. The group discusses the severe level of pain caused by pancreatic cancer and Doris’s wish that she not experience intractable pain. A compromise is reached that takes both Doris’s and Sheila’s wishes into consideration.
Removing or Deactivating Cardiovascular Implants
Implanted cardioverter/defibrillators (ICD) are used to correct life-threatening dysrhythmias. An actively dying patient may develop ventricular tachycardia due to hypoxia or electrolyte imbalances. If the ICD has not been deactivated or reprogrammed to prevent shocks, the device will continue to attempt to function by delivering painful shocks
A consensus statement from the Heart Rhythm Society (2010) suggests that patients nearing the end of life (or their healthcare proxy) have the right to decide whether to have these pacemakers or other cardiovascular implants removed or deactivated. The statement was developed in collaboration with several organizations, including the American College of Cardiology and the American Heart Association. It explicitly states that removing an implanted cardiovascular device near the end of life “is not physician-assisted suicide or euthanasia.” However, it also states that physicians or other caregivers cannot be compelled to carry out a procedure that conflicts with their ethical values. In such cases, the physician cannot abandon the patient but rather should refer patients to a colleague willing to carry out the task (Thanavaro, 2012).
Advance medical directives are documents containing patients’ oral and written expressions of their preferences about future medical care if they should become unable to speak for themselves. Federal law (the Patient Self-Determination Act) requires hospitals to inform patients that they have the right to complete an advance directive. Advance directives are regulated by state law and therefore may differ from state to state.
Less than one third of Americans have advance directives (i.e., a living will and a healthcare power of attorney). Older patients are more likely to have such directives, with 41.2% self-reporting them in a recent study (CDC, 2012b; Waite, 2013).
When a surrogate is making end-of-life decisions for a patient, 82% of physicians reported satisfaction in following the wishes of the surrogate named in the advance directive. The relationship between the physician and the surrogate is more likely to be satisfactory if the patient is older or in the intensive care unit. Twenty percent of physicians reported having no prior relationship with patients prior to seeing them in the hospital, possibly due to the upsurge in the practice of the hospitalist, causing them to be no more familiar with the patient than with a surrogate (AHRQ, 2010).
Healthcare professionals have an obligation to work with patients and their families to reach decisions that balance autonomy and beneficence.
LIVING WILL AND MEDICAL POWER OF ATTORNEY
In most states, an advance directive can be either a living will or a medical power of attorney, also called a durable power of attorney for healthcare, a healthcare proxy, or declaration or appointment of a healthcare agent. In California, the Healthcare Decisions Law combines the power of attorney and the declaration of a healthcare agent in a single document called the Advance Healthcare Directive (California Coalition for Compassionate Care, 2000). In Pennsylvania, the Health Care Decision-making Law specifies that if a person has not designated someone as a healthcare proxy, the decision-maker shall generally be a spouse, adult child, parent, adult sibling, adult grandchild, or close friend, in that order (PA HealthCare DecisionMaking, 2007).
According to the President’s Council on Bioethics (2005), “advance instruction directives (or living wills), though valuable to some degree and in some circumstances, are a limited and flawed instrument for addressing most of the decisions caregivers must make for those entrusted to their care.” Rather than try to anticipate every aspect of future circumstances, the Council found that,
Advance proxy directives are much more valuable and should be encouraged… . Naming of proxy decision makers provides clear identification of who shoulders the responsibility to act for the patient and makes it clear to physicians and others with whom they must deal. Such knowledge makes it much more likely that there will be the desirable discussions between family and professional caregivers at all important junctures of treatment and care.
PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT (POLST)
Several states have adopted an advance directive form developed in Oregon and known as POLST, which stands for Physician Orders for Life-Sustaining Treatment (POLST, 2012). This simple form, to be completed and signed by both patient and a physician or nurse practitioner, specifies the patient’s preferences concerning measures such as antibiotics, artificial nutrition (including tube feeding) and hydration, CPR, comfort measures, and mechanical ventilation/respiration.
The form is printed on brightly colored paper and stays with the patient during transfers from one care setting to another. Patients at home keep the POLST form on the refrigerator where emergency responders can find it. Long-term care facilities retain POLST forms in residents’ charts. (See “Resources” at the end of this course for information about POLST programs in each state.)
DO-NOT-ATTEMPT-RESUSCITATION (DNAR) ORDERS
Do-not-attempt-resuscitation orders (formerly known as do-not-resuscitate orders) have been renamed to emphasize the minimal likelihood of successful cardiopulmonary resuscitation (CPR). Patients and families need to understand not only the unlikely success of resuscitation but also the risks involved, which include fractured ribs, damaged internal organs, and neurologic impairment. Although the patient (or family) must ultimately decide about whether to attempt CPR, healthcare professionals need to explain that withholding CPR does not equate with letting someone die. Rather, a DNAR order should be considered an “Allow Natural Death” order (Whitcomb & Ewing, 2012).
The primary care provider should discuss the possibility of a DNAR order as soon as it is reasonable. A delay in putting a DNAR order in place may result in treatment unwanted by the patient and distress for the healthcare team. The DNAR order should be readily available in the event of an emergency to ensure that the patient’s wishes will be honored. It should be posted prominently, either on the head or foot of the bed, or if the patient is at home, on the refrigerator. The specifics of the order should also be carefully documented in the patient’s chart (University of Illinois at Chicago School of Medicine, 2013).
MECHANICAL VENTILATION (MV)
Decisions about mechanical ventilation (MV) can be spelled out in the patient’s advance directive. Some patients choose to forgo MV, believing that it merely prolongs the dying process. Others choose to have MV when they can no longer breathe on their own. Choosing MV may reflect the erroneous belief that this life-sustaining treatment can improve the patient’s prognosis.
Depending on the physician, choosing MV may affect the physician’s certification of the patient as terminal and therefore eligible for hospice benefits. Use of MV requires that the patient lie in bed or sit in a chair with restricted movement. If an endotracheal tube is used, the patient will not be able to speak or swallow. Mechanical ventilation also increases the risk of pneumonia because it prevents patients from coughing effectively and allows fluid to build up in the lungs. Once MV is started, the decision to withdraw it may present a legal and ethical controversy for the physician and the family. In some cases, withdrawal of this life support may require a court order.
ARTIFICIAL NUTRITION AND HYDRATION (ANH)
Patients who receive hospice care have food and drink as they wish or need. Some individuals make their own choice (often as part of an advance directive) to stop or limit eating or drinking at a certain point in their dying process (Torpy et al., 2012).
Decisions about whether to have ANH involve weighing the potential benefit and the burden to the patient. Clinicians need to help families understand that forgoing ANH is not “killing” or “starving” the patient. The American Nurses Association (ANA) and the Hospice and Palliative Nurses Association (HPNA) have issued position statements that show there is consensus in the nursing profession regarding ANH. The ANA supports patients’ (or surrogates’) right to weigh the risks and benefits of ANH for themselves after a full discussion by the healthcare team (Buck, 2012).
In a recent research study of nurses’ experiences with ANH, nurses reported that when they are part of the decision-making process regarding ANH, they are as likely to experience guilt and sadness as family members. The study also concluded that if nurses are practicing in an environment that respects the dignity of the patient, they experience satisfaction in their contribution to the decision.
Little evidence supports the use or disuse of hydration as a comfort measure in end of life. The reason for this lack of evidence is that it is not ethically possible to conduct a controlled, randomized clinical trial in which one group of patients near the end of life receives hydration and a second group has hydration withheld (Krishna, 2011).
Although ANH may extend the patient’s life a few days or weeks, there is considerable physical and emotional trauma in inserting a nasogastric tube or undergoing surgery to place a gastrostomy (feeding) tube, plus increased risk of infection, increased risk of aspiration, erosion of nasal tissue, and increased diarrhea.
Application of restraints to keep the patient from pulling out the tube can cause the patient to struggle. Nasogastric tube feedings can lead to such complications as pain, aspiration pneumonia, epistaxis, pharyngitis, esophagitis, airway obstruction, and metabolic derangements. Many health professionals feel that hospice care is a more humane alternative to ANH (Krishna, 2011).
There is widespread use of feeding tubes at the end of life, particularly in patients with Alzheimer’s disease or other cognitive impairment, even though there is not sufficient evidence to prove enteral tube feeding is beneficial in patients with advanced dementia (Brody et al., 2011). (See “The Patient Who Has Dementia” below.)
Research suggests that people who choose not to have ANH do not suffer due to hunger or thirst. Furthermore, without ANH, patients are less likely to experience bloating or to develop pleural effusions (fluid around the lungs), which can cause shortness of breath, or fluid in the throat, which requires suctioning. Studies also indicate that forgoing artificial hydration increases the body’s production of endorphins (natural pain-relieving hormones), making the patient more comfortable and less likely to experience pain (Lynn & Harrold, 1999). The only side effect of dehydration at the end of life is dry mouth, which can be relieved by good mouth care, ice chips, or moistened sponge swabs.
Kathy, a hospice RN, was questioned by the family of an elderly patient on hospice care in the nursing home where she worked. When the discussion turned to a decision about continuing artificial nutrition and hydration (ANH) for their loved one, a few of the family members expressed concern that withholding nourishment and liquids would cause unnecessary suffering by “starving her to death.” Kathy was able to explain that studies showed no benefit in giving tube feedings or intravenous (IV) therapy to dying patients, and in fact could possibly cause discomfort or pain. Kathy assured the family that the nursing staff would continue to keep the patient comfortable, give her pain medication when needed, and moisten her mouth with ice chips to keep it from feeling dry.
EFFECTIVE COMMUNICATION WITH PATIENTS AND FAMILIES
Although talking about illness and death can be difficult for both health professionals and patients, studies show that most patients want to have this discussion. Sharing bad news while maintaining hope is a delicate balance that takes practice to achieve. Health professionals need to support the patient’s and the family’s hopes for prolonging life as well as their hopes for peace and dignity throughout illness, dying, and death. Patients should never be told, “There’s nothing more we can do,” because this discounts what can be done to improve the quality of whatever life remains. Effective management of pain and other symptoms as well as emotional and psychological support of the patient and family are always possible.
Effective communication by hospice nurses and others enhances symptom management for the patient, reduces family caregiver burnout and distress, and potentially improves bereavement adjustment (Ellington et al., 2012).
STRATEGIES FOR PROMOTING FAMILY-CENTERED END-OF-LIFE CARE
- Get to know the family
- Assess the family’s understanding of the patient’s condition
- Keep the family informed
- Provide clear, honest information to the family
- Maintain consistency of care providers
- Coordinate early family meetings
- Facilitate the decision-making process
- Assist the family through shared decision-making
- Guide the family through the end-of-life process
- Prepare the family for what to expect during the dying process
Source: Wiegand et al., 2013.
When and How to Talk about Death
A pilot study by Ellington and colleagues (2012) explored home health hospice nurse communication with caregivers and patients with cancer. Patient-centered communication has been proven to be directly linked to improved patient outcomes such as a reduction in stress. The hospice nurses ask open- and closed-ended questions that attempt to persuade, suggest, or change behavior within all topic domains:
- Physical care
Many patients need permission or an invitation to express their values and preferences about end-of-life care. One way to broach the subject is with an open-ended question such as, “When you think about getting very sick, what worries you the most?” “How important is your religion to you?” “You sound very frustrated with your family.” “I am really worried that you aren’t getting enough sleep.”
Some questions or statements are directed to the caregiver: “You need to make the effort to take a break every day”; “I was very close with my mother, too.”
Another way to open the conversation is to say: “Many patients with this condition tell me they think about dying. They have questions about this. How about you?” “What do you think would help?” “How do you think you could tell your kids about this?” Making empathic statements gives the patient an opportunity to express needs and concerns and shows the healthcare practitioner’s concern for the patient. Feeling that one’s doctor or nurse truly cares evokes trust, confidence, and hope in the patient.
Raising the topic of advance directives can also help to open the discussion of what the patient wants, needs, expects, and fears during this final phase of life. The following questions may be helpful:
- If you were to get so sick that you could not talk to me directly, whom should I talk with to help me make decisions about your care?
- Does this person know about this responsibility?
- Does he or she know what you want?
- What would you want?
- Have you written down what you want?
The physician is most likely to initiate the conversation, but nurses and other healthcare practitioners should also be prepared to discuss these issues as needs and circumstances change.
Actively listening to the patient is equally if not more important than talking to the patient. Questions that will elicit key information about the patient’s perspective include:
- What do you hope for as you live with this condition?
- What do you fear?
- It is usually hard to know when death is close. If you were to die soon, what would be left undone in your life?
- How are things going for you and your family?
Both patient and family need timely, clear information about prognosis. It is difficult, and often impossible, for clinicians to answer questions about “how long,” but it is possible to describe the probable course of a particular illness in understandable terms. This helps patients do what is most important to them, such as making a will, seeing family and friends, and telling loved ones. Clinicians tend to be overly optimistic when discussing prognosis, which can delay referral to hospice and cause unnecessary pain and suffering for the patient and family.
Explicitly discussing death helps the patient express fears and concerns about the dying process and allows the clinician to address them directly. For example, the patient may say, “I don’t want to die hooked up to machines” or “I don’t want any heroics.” This is an opportunity to allay that concern, for instance, by talking about hospice care.
FAMILY CONFERENCES FOR PATIENTS DYING IN THE ICU
End-of-life family conferences are an important part of ICU practice in many hospitals because they help relieve stress and anxiety for those with loved ones dying in the ICU. Families are intricately involved in the end-of-life decision-making process for a family member with a serious illness in the intensive care unit (ICU) setting. However, families are not always as involved and as informed as they would like to be.
Ideally, these conferences are held in a quiet room, once the family has been given sufficient time to gather, and allow for discussion of the patient’s situation and an opportunity for the family to ask questions, express concerns, and confront painful emotions with the help of caring, compassionate professionals. Included in these discussions will be the attending physician, the nurse most familiar with the patient, and possibly a member of the clergy.
Guidelines for these conferences are based on the VALUE mnemonic:
- Value what the family members say
- Acknowledge their emotions
- Understand the patient as a person through asking questions
- Elicit questions from family members
Source: Wiegand et al., 2013; Lautrette et al., 2007.
“The worst thing about using hospice care? The way they talk to you about death.” This Latino family caregiver’s response during a research interview (Kreling et al., 2010) reminds us that not all cultures share the same values and beliefs about end-of-life care.
Culture is often defined as the set of attitudes, beliefs, and values that people and societies pass down between generations. It can have a significant impact on patients’ and families’ beliefs and expectations in the healthcare setting. Cultural sensitivity also includes the avoidance of stereotyping. Diversity of values and beliefs exists within each culture, making it important to ask open-ended questions rather than making assumptions based on appearances.
According to the 2010 U.S. Census, 27.4% of America’s increasingly diverse population is composed of ethnic minorities, whose values and beliefs may differ sharply from those of white Americans of European or Arabic ancestry. Cultural beliefs about healthcare, especially end-of-life issues, are as diverse as the different cultures that seek healthcare. Cultural competency requires that healthcare workers understand these differences to be effective and respectful in their delivered care (Quinn et al., 2013).
“BENEFICENCE” VERSUS “TRUTH-TELLING”
Whereas the mainstream U.S. model of end-of-life care values autonomy and “truth-telling,” healthcare models in other cultures value beneficence, which includes protecting the patient from bad news about serious illness. In these cultures, disclosure of serious illness may be considered disrespectful, impolite, or even harmful to the patient.
Learning about the patient’s and family’s cultural values can begin with a simple statement followed by an open-ended question: “Some people want to know about their illness and others do not. Some would prefer that I talk with a family member. How do you feel about it?” This gives the patient the option to refuse or accept information about diagnosis or prognosis and to designate a family member to act as a surrogate.
Researchers suggest three strategies for addressing the “secrecy” dilemma and other cultural differences in end-of-life care:
- Community education to increase the knowledge about palliative and hospice care
- Use of case assessment tools to determine communication preferences and the family’s role in decision-making
- Providing culturally sensitive end-of-life navigation
In Latino communities, promotores(as) may prove helpful in implementing these strategies (Kreling et al., 2010). “Promotores and promotoras are community members who promote health in their own communities… . As members of minority and underserved populations, they are in a unique position to build on strengths and to address unmet health needs in their communities” (Migrant Health Promotion, 2010).
Some cultures emphasize family versus individuals (collectivism) and family decision-making (familism) (Kreling et al., 2010). Protecting the patient from bad news means that decisions about care will be made by the family, the physician, or a family/physician collaboration.
Preferences about end-of-life care are as diverse as America’s population. In communicating with patients and families about end-of-life care, it is important to be aware of different cultural attitudes and practices. For instance, completing advance directives is less common among Asian Americans, Hispanic Americans, and African Americans
There are well-documented differences in preferences for end-of-life care and the use of services between non-Hispanic whites and African Americans. African Americans do not use advance care planning (ACP) documents or hospice as much as non-Hispanic whites. African Americans choose more aggressive, life-sustaining treatment at the end of life, even if that treatment seems likely to be burdensome with little chance of success. The reasons for this are multifaceted and include knowledge of and access to services, historical mistrust of the healthcare system, and spiritual beliefs (Wicher & Meeker, 2012).
Hispanics are often very concerned about dying with dignity and receptive to hospice care and hospitals, but they may want to avoid nursing homes. The majority of older Hispanic patients prefer less aggressive, comfort care at the end of life. The initiation of advance directives by Hispanic patients is very low in spite of the provision of bilingual and culturally sensitive information. The majority of Hispanics have never discussed ACP with their physicians. Older Latinos are less likely to use hospice services and more likely to die in the hospital than non-Hispanic whites (Kelley et al., 2010).
In a cross-sectional study conducted with elderly Asian residents in 140 nursing homes, approximately 35% preferred to die in their nursing homes. The preference for advance directive included asking for relatives’ advice, wishing to be informed of their terminal illness diagnoses, absence of stroke, and having no problems with self-care. Most cognitively normal Asian nursing home older adults preferred having an advance directive, and one third of them preferred to die in nursing homes (Leung-Wing et al., 2011).
MANAGEMENT OF PAIN AND OTHER SYMPTOMS
Pain is now recognized as the fifth vital sign. Many people who have come to terms with their own mortality still fear the possibility of a painful death, and that fear is justified. More than two thirds of patients with advanced cancer experience severe pain. Patients with other chronic diseases such as AIDS, sickle cell disease, and arthritis also suffer extreme pain, which may be ineffectively treated. Experts estimate that, when properly treated, almost all of these patients could gain significant relief from pain (Dy, 2010).
Inadequately treated pain has many potential consequences, including reduced quality of life, reduced function, physical complications, reduced ability to tolerate treatments, and psychosocial difficulties. Almost all pain can be controlled to some extent with the wide range of available treatments.
The patient’s preferences should define the goal of pain management. Some patients will choose to be completely pain-free, even if it means sedation. Others will choose only to control pain enough so that they can continue to function with alertness. If pain becomes severe at any time, but particularly in the last days or hours of life, it should be treated around-the-clock.
Pain is frequently multidimensional, with psychosocial and spiritual components. Other symptoms, distress, or psychosocial or spiritual concerns can interact with and exacerbate physical pain or impact the effectiveness of pain treatment (Dy, 2010). Pain not only hurts, but it is also physically and emotionally debilitating. Severe chronic pain can cause depression, anxiety, fear, diminished appetite, impaired sleep, and sometimes thoughts of suicide. When pain is relieved, many of these symptoms disappear. The patient then can focus on other important end-of-life issues, such as unfinished business with family and friends or spiritual or religious concerns.
Patients have a right to relief from pain. The Joint Commission requires that hospitals and other healthcare facilities regularly assess, monitor, and manage pain in all patients. Those facilities that fail to do so risk losing accreditation. Until all health professionals learn the principles of pain management explicit to palliative care, however, patients will continue to suffer needlessly.
Inadequate education of health professionals in pain management is only one reason why patients suffer. The other is general mistrust about the use of narcotic analgesics and worry about addiction or overdosing on these medications. Patients may also consider requests for pain medication as “giving up” or “giving in” to their disease. Clinicians can correct these myths and misinformation and reassure patients that managing their pain is fundamental to improving their quality of life.
Although addiction is not a concern when treating dying patients, tolerance to and dependence on opioids may develop over time. If tolerance to particular drugs occurs, it will be necessary to increase the dosage to gain relief. If dependence develops and the patient needs to be taken off the drug, it should be done gradually in order to avoid withdrawal symptoms.
Effective pain management begins with assessment of the patient’s pain. Because pain is a subjective experience, it is important to ask the patient to describe the pain in terms of location, intensity, and character. There are a number of pain assessment tools available; healthcare practitioners should consult their agency protocols.
Pain perception varies from person to person, depending on age, culture, emotional status, past experiences with pain, and the source and meaning of the pain. Some cultures dictate stoicism when experiencing pain, which may cause people not to admit pain or request medication. Men are more likely to “tough it out” because of cultural and gender attitudes.
Older adults may have a higher pain threshold than younger people or children due to normal age-related changes in neurophysiology. Because of their higher pain threshold, however, older patients are at risk for undertreatment of pain. They may have multiple chronic diseases and sources of pain as well as complex medication regimens that increase the risk of drug-drug and drug-disease interactions.
Visual, hearing, motor, and cognitive impairments can impede communication about patients’ pain. Anxiety and depression can exacerbate the pain experience, as can fatigue and sleeplessness. Untreated pain can then cause further sleeplessness, which leads to more fatigue, setting up a cycle of suffering.
Knowing the source of pain can be a relief in itself, particularly if the patient has imagined a worst-case scenario and the source of the pain turns out to be a minor correctable condition. The meaning of pain also affects the patient’s perception of it.
Pain should be reassessed at least as often as the vital signs are taken and management efficacy reassessed when patients are transferred from home to hospital, nursing home, or hospice (NCI, 2010a).
Medications can make a drastic difference in the lives of those suffering with pain, and they comprise an important aspect to end-of-life care in many instances. (A detailed description of pain medications is beyond the scope of this course, but the following provides basic information.)
THREE-STEP LADDER APPROACH
The World Health Organization developed a three-step ladder approach to pain management.
The WHO three-step dosing model for the treatment of pain. (Source: Adapted by author from WHO, 2013.)
Using this guideline for managing pain does not mandate sequential use, particularly in terminal illness. Patients with severe pain may need to begin with step 3. To maintain freedom from pain, drugs should be given “around the clock,” that is, every 3–6 hours rather than “on demand or PRN.” This three-step approach of administering the right drug in the right dose at the right time is inexpensive and 80%–90% effective.
Step 1 analgesics include aspirin, acetaminophen, and nonsteroidal anti-inflammatory drugs (NSAIDs). Types of NSAIDs include ibuprofen, aspirin, naproxen, ketorolac, and diclofenac (nsaidslist.com, 2013). All pain medications, even step 1 analgesics, have side effects. NSAIDs can cause gastrointestinal bleeding. Acetaminophen can be toxic at doses exceeding 4g in 24 hours, particularly in patients with compromised liver function.
Step 2 and step 3 analgesics include the opioids, such as codeine, fentanyl, hydrocodone, hydromorphone, morphine, and oxycodone. In step 2, the opioid is combined with either acetaminophen or aspirin. In step 3, the opioid and a step-1 drug are combined with adjuvant drugs such as antidepressants (e.g., fluoxetine, sertraline, and escitalopram) (WHO, 2013).
Many opioids are available in sustained-release form as tablets and granules. Fentanyl is also available in a skin patch that will last up to 72 hours. However, sustained-release formulations should not be used for “rescue” dosing because they will not work quickly enough to relieve intense pain. In January 2010, the FDA approved morphine sulfate oral solution for the relief of moderate to severe, acute and chronic pain in opioid-tolerant patients. The solution is available in 100 mg per 5 mL (20 mg per 1 mL) (FDA, 2010a).
When a patient is unable to swallow an oral medication, less invasive routes (rectal, sublingual, or transdermal) should be offered first. Parenteral methods should be used only when simpler, less-demanding, and less-costly methods are inappropriate, ineffective, or unacceptable to the patient. Intravenous (IV) or subcutaneous doses should be chosen over intramuscular (IM) injections, as they are less painful and absorb at a comparable rate. In general, assessing the patient’s response to several different oral opioids is advisable before abandoning the oral route in favor of anesthetic, neurosurgical, or other invasive approaches (NCI, 2010a).
Oral transmucosal fentanyl citrate is used for the relief of breakthrough pain. The lipid solubility of fentanyl allows rapid onset of pain relief (NCI, 2010a). Fentanyl can also be given in the form of an intranasal spray or a buccal tablet for patients who are unable to swallow pills (Vissers et al., 2011).
End-of-life patients may experience agitation. Lorazepam (Ativan) is an anxiolytic/sedative that may be taken as an injection, intravenously, orally, or sublingually. The pills come in 0.5, 1, and 2 mg doses (healthcentral.com, 2013).
PROPER SAFEGUARDING OF NARCOTICS
Many end-of-life patients receiving palliative care or hospice at home possess large amounts of narcotics and other controlled substances to alleviate pain and control anxiety. While these are essential to keep the patient comfortable, abuse and disposal of such medications may pose problems. Improper disposal of these substances by flushing down the toilet or into sinks may introduce them into the groundwater and drinking water supplies, and they have been measured in the tissue of aquatic organisms (Mankes & Silver, 2013). Equally important is the need to safeguard against the use of controlled substances in the home by anyone other than the patient for whom the medications were ordered (Allen, 2010).
Isabella Delaney is a 76-year-old widow with an inoperable astrocytoma in the parietal lobe of her brain. She has undergone palliative radiation treatments in the hospital and has been discharged to home to be cared for by her 54-year-old daughter, Eileen, and a home health aide who comes every other day.
Although the tumor has shrunk in size since the radiation therapy, Isabella still complains of severe headaches, up to 7–8 on the 0–10 pain scale. Her doctor has ordered ibuprofen with fentanyl patches for the pain. Isabella is instructed to keep a log indicating when patches are applied and removed and how disposal of used patches is managed. Isabella is forgetful and occasionally neglects to remove the previous patch when she puts on the new one, every 72 hours. When this happens, she becomes confused, agitated, and even more forgetful. Also, she does not consistently maintain the log.
Eileen’s 28-year-old son, Paul, has a history of substance abuse and has been in rehab twice for narcotic addiction. Lately he has been taking his grandmother’s fentanyl patches when he visits his mother, telling himself they’re not good for Isabella. The home health aide notes that the count is off and notifies Eileen. She also notifies her agency supervisor. After reviewing all the circumstances (Isabella’s forgetfulness, the incomplete log, the presence in the house of a person with a known history of substance abuse), the supervisor instructs Eileen to lock up the supply of patches, remove and apply them herself to prevent overdosing, and lock up the used patches as well.
ADDRESSING SIDE EFFECTS
Skilled use of opioids affords effective pain relief to most patients. Like all drugs, however, they have side effects, some of which can be uncomfortable or even painful in themselves. They include drowsiness, nausea and vomiting, dyspnea (shortness of breath), dry mouth, and constipation. Some side effects ameliorate after a few days, and most can be prevented or treated successfully.
Drowsiness frequently occurs at the beginning of opioid therapy, not only from drug action on the brain but also because the patient has been sleep-deprived due to unrelieved pain. Once normal sleep patterns resume, the drowsiness generally lessens.
Nausea and Vomiting
Nausea and vomiting can usually be controlled once the source of the problem is identified. For patients who cannot tolerate morphine or NSAIDs, substitution of a different opioid or a sustained-release formulation may relieve the symptoms. Vomiting related to chemotherapy can be treated with serotonin receptor antagonists such as ondansetron, granisetron, or dolasetron.
If nausea and vomiting are related to disturbances of the labyrinth, such as motion sickness, vertigo, or migraine, use of antihistamines and anticholinergics (meclizine, dimenhydrinate, or transdermal scopolamine) may offer relief.
In some patients, nausea and vomiting can be triggered by smells, sights, or sounds; this is referred to as psychogenic or anticipatory vomiting. For these patients, benzodiazepines (anti-anxiety drugs such as buspirone and lorazepam) may provide relief. Benzodiazepines can interfere with short-term memory, especially in older patients, or cause confusion in those already cognitively impaired.
Vomiting may also be related to increased intracranial pressure (e.g., from central nervous system tumors). These patients may benefit from a combination of corticosteroids and serotonin receptor antagonists.
Constipation may trigger nausea and vomiting in patients with advanced disease. Stimulant laxatives such as senna derivatives can promote gut emptying and offer relief.
Dyspnea (shortness of breath, difficult breathing) is common among dying patients, who may report a feeling of tightness in the chest or a feeling of suffocation. Dyspnea may be an initial effect of opioid therapy or may result from other causes, including pneumonia, pulmonary embolism, pleural effusion, bronchospasm, tracheal obstruction, neuromuscular disease, restricted movement of the chest or abdominal walls, cardiac ischemia, congestive heart failure, superior vena cava syndrome, or severe anemia. Treatment is determined by the diagnosis.
Three basic approaches are used to treat dyspnea in the dying patient: oxygen, opioids, and anti-anxiety medications. Nonpharmacologic methods such as meditation or guided imagery may also be effective. Although most patients are not hypoxic, supplemental oxygen may be helpful unless the cannula or face mask cannot be tolerated. Fresh outdoor air or a breeze from a fan may also afford relief. Low-dose immediate-release morphine, in either oral or buccal formulations, also can be effective.
Preventive measures against constipation should begin at the same time as opioid therapy. Normal bowel function varies from person to person, so it is essential to establish what the patient considers normal and whether he or she is having any difficulty with bowel movements. Preventive or treatment measures can then be tailored accordingly. Untreated constipation can cause bloating, abdominal pain, nausea and vomiting, overflow incontinence, fecal impaction, or bowel obstruction.
First-line therapy for constipation includes stool softeners and stimulant laxatives such as prune juice or senna derivatives. If these prove insufficient to maintain or restore normal bowel function, osmotic laxatives such as magnesium salts, sorbitol, or lactulose may be added.
A lubricant stimulant such as mineral oil may be used if the patient is able to swallow. However, mineral oil should not be given to patients who have difficulty swallowing because aspirating mineral oil can cause pneumonia. Mixing the oil with orange juice or root beer makes it more palatable. It should be given when the patient’s stomach is empty to avoid interference with fat-soluble vitamins.
If the patient is ambulatory, increased activity can help promote bowel function. Simple measures such as increased fluid intake, a regular toileting schedule, privacy, and if the patient is bedfast, use of a bedside commode rather than a bedpan can be helpful. Peristalsis is generally strongest after eating, especially in the early morning.
Pain medications and many other pharmaceuticals (e.g., antidepressants, anticholinergics) can dry the lips and oral mucous membranes, leading to cracking, ulceration, and bleeding. Patients on oxygen therapy and those who have chosen to forgo artificial hydration and nutrition may also experience dry mouth. When increasing fluid intake is not an option, lubricants such as liquid vitamin E or Blistex applied to the lips can help prevent cracking. Mouth swabs moistened with water or alcohol-free mouthwash can be used to relieve discomfort and to clean teeth, gums, and tongue. Limit or avoid use of any products containing alcohol, which can further dry the mouth.
TREATING OTHER END-OF-LIFE SYMPTOMS
Delirium is a condition marked by changes in clinical and mental status and has been understood as prevalent and dangerous, particularly among elderly or frail patients (Kamholz, 2010). It is the most common neuropsychiatric disorder at the end of life. For example, delirium occurs in approximately 90% of advanced cancer patients in the final days or weeks of life. Defined as a disorder of global cerebral dysfunction characterized by disordered awareness, attention, and cognition, delirium is sometimes called an “acute confusional state” or “terminal restlessness.”
Delirium is categorized as hyperactive (agitated), hypoactive (quiet), or mixed (exhibiting both hyperactive and hypoactive characteristics). Hyperactive delirium is more readily diagnosed and treated. Hypoactive delirium may be overlooked or misdiagnosed as depression. Hypoactive delirium is the most common type among older adults in all care settings (Kamholz, 2010).
Disturbances in sleep-wake cycles and psychomotor activity, delusions or hallucinations, and emotional lability may all occur. The agitation, moaning, and grimacing of delirium may be misinterpreted as signs of pain. The most significant elements of dementia are inattention and broad fluctuations of symptoms. These are not major components of any other psychiatric illness of late life (Kamholz, 2010). Delirium can create distress for both patient and caregivers, interfering with patient comfort and meaningful interaction with family members.
Many episodes of delirium can be effectively treated and in some cases prevented. Risk factors for delirium include cognitive impairment, sleep deprivation, immobility, visual impairment, hearing impairment, and dehydration. Early identification and interventions to address these risk factors can significantly reduce the number and duration of episodes of delirium in older patients (Kamholz, 2010). For example, the patient who normally wears glasses and/or a hearing aid may become confused without these appliances.
The principle of treatment of delirium is to determine and treat the reversible causes of delirium and to mitigate other causes. Delirium may be related to use of medications such as opioids. Changing to a slightly less potent opioid may be effective. Neuroleptic medications (antipsychotics) such as Haloperidol are recommended to reduce agitation in patients with hyperactive delirium; however, they may cause drug-induced Parkinsonism and motor restlessness. Evaluating the clinical need for opiates, anticholinergics, benzodiazepines, and dopaminergics is critical to identify whether any CNS active medications can be discontinued. Use of benzodiazepines may help calm the dying person with hyperactive delirium but tends to intensify confusion (Kamholz, 2010).
Some patients experience a significant fever, which may be evidence of an infection or the body’s response to chemotherapy or radiation therapy. At the end of life, no effort is made to discover the source of the fever, as it will not be treated, and obtaining cultures may be painful for the patient. However, a fever is expected to cause the patient discomfort. Acetaminophen may be ordered for the patient as an anti-pyretic. If the patient is unable to swallow pills, the acetaminophen may be given via suppository.
Patients in a comatose or obtunded state may not fully close their eyes, allowing the uncomfortable possibility of dried corneas. Artificial tears (polyvinyl alcohol 1.4%) may be ordered to be administered every hour around-the-clock to lubricate the eyes.
Nonpharmacologic Pain-Relief Measures
Not all pain relief comes from medications. Other methods, some of them simple, may increase patient comfort and well-being as they augment the effects of drugs. For example, massage or application of heat or cold may help relieve musculoskeletal pain. Repositioning the patient can sometimes relieve pain. Physical therapy may also be beneficial.
Adjuvant therapies for intractable pain include radiation therapy (to shrink tumors or relieve bone pain), radiofrequency ablation for bone pain, surgery to debulk a tumor, nerve blocks, or intrathecal pumps to deliver large doses of opioids without systemic sedative effects.
Complementary therapies such as acupuncture, guided imagery, biofeedback, hypnosis, progressive muscle relaxation (e.g., listening to audiotapes of relaxation techniques), meditation, and music therapy can also be helpful, not only in relieving pain but also in relieving emotional and psychological distress. Psychotherapy, particularly for patients suffering from depression, can have a positive effect on patients’ perception of pain and response to pain medications. Support groups and pastoral counseling may also be helpful to some patients by reducing psychological distress.
Mr. Willoughby is an 83-year-old hospice patient admitted to the hospital since his family is no longer able to care for him at home. He is unresponsive to all stimuli and unable to swallow. His respirations are 10–12 per minute; no other vital signs are being taken. The physician’s orders are as follows:
- Comfort care
- Turn every 2 hours
- Mouth care every 4 hours
- Lip balm every 8 hours
- Family may visit at all hours
Ordered medications include:
- Roxanol (immediate release oral morphine sulfate solution) 20 mg/ml 0.5–1 ml every hour sublingually as needed for signs of pain
- Dulcolax suppository per rectum every day for constipation
- Artificial tears, 1 drop each eye every hour
- Tylenol suppository, 650 mg per rectum every 4 hours PRN for fever or “hot skin”
- Ativan, 1 mg SL every 4 hours PRN agitation
Luanne, his nurse, explains to the family that comfort care status doesn’t mean Mr. Willoughby will not be cared for. She explains that every usual nursing care activity in the hospital, such as collecting vital signs, is considered in terms of the discomfort it may cause the patient and the possible benefits that may be derived. Luanne explains the reasons for each of the physician’s orders and how they help keep the patient comfortable.
Family members express their wish to help and are encouraged to participate in Mr. Willoughby’s care. Luanne demonstrates how to turn the patient and support him with pillows. She tells them that gentle massage to the extremities and frequent application of lip balm to the patient’s mouth will help to keep him comfortable. However, family members are not allowed to administer medications in the hospital, not even over-the-counter remedies.
PSYCHOSOCIAL SUPPORT ISSUES
Coming to terms with one’s own mortality is different for each individual and is related to the way he or she handles other life challenges. Compassionate care and support from health professionals and loved ones are essential during this crisis. Adjusting to palliative care involves shifting the patient’s and family’s expectations from curing to healing. Even when cure is no longer possible, healing is.
Lerner (1996) defines healing as “an inner process through which a person becomes whole,” a process of transforming one’s life in a variety of ways in the face of death. This shift in expectations can help maintain hope, seen as crucial in overall adaptation to crisis. For example, the patient who has confidence that pain and suffering can be controlled will have hope for future quality of life. Patients who believe they are loved and cared for will have hope in their relationships.
Common End-of-Life Emotions
The person diagnosed with a terminal illness experiences a host of emotions, including fear, anxiety, depression, anger, and feelings of loss and grief. These are all normal reactions and deserve equal emphasis with physical care at the end of life. Effective coping with these reactions can improve the quality of life remaining and help the patient resolve important issues with family and friends.
The most common fears are those of death itself, pain, dying alone, and being a burden. People with strong spiritual beliefs may not fear death but still fear the possibility of pain and suffering at the end of life. Fear can heighten the expectancy of pain and lead to symptoms such as distress, sleep disturbances, anticipatory nausea, and vomiting. Fear can substantially interfere with the quality of life. Health professionals with expertise in palliative care can reassure patients that pain and suffering will be relieved and that patients will not die alone.
Most people also have concerns about loss of dignity and control. Caregivers can provide comfort by allowing the person to express any fears and concerns about dying and by reassuring the person that they will honor advance directives. They include patients in discussions about issues that concern them. They listen to patients reminisce about their lives. They may simply keep the person company; talking, watching movies, reading, or just being there also can be comforting (NCI, 2013a).
It is now clear that depression at the end of life is common, underdiagnosed, and undertreated.
—James Hallenbeck (2000)
Sadness and grief are normal reactions to learning that one has a terminal illness, but not all patients experience true clinical depression. Depression is a disabling syndrome that affects approximately 15% to 25% of all cancer patients (NCE, 2013b). Health professionals need to distinguish between normal sadness and the level of depression in each patient. Depression is commonly underdiagnosed in the general population; consequently, depression in dying patients may be a pre-existing condition. Just as patients require ongoing evaluation for depression and anxiety throughout their course of treatment, so do family caregivers.
The following factors may suggest the need for early intervention to treat depression as part of end-of-life care:
- History of depression
- Weak support system (not married, few friends, solitary work environment)
- Evidence of persistent irrational beliefs or negative thinking regarding the diagnosis
- Greater dysfunction related to the illness
The patient who appears depressed should first be assessed for pain. Untreated or undertreated pain can cause depression and other symptoms.
SYMPTOMS OF DEPRESSION
- Feeling sad, anxious, or “empty” most of the day, almost every day
- Decreased interest or pleasure in almost all activities, including sex
- Decreased or increased appetite and/or weight changes
- Disturbed sleep patterns—sleeping more or less than normal
- Fatigue or agitation
- Feelings of worthlessness or excessive guilt
- Inability to concentrate or make decisions
- Recurrent thoughts of death or suicide, or suicide attempts
Depression is treatable both with antidepressant medications and psychotherapy. Depression in dying patients is not markedly different from depression in other medical conditions. However, treatment may need to be modified because of other factors, particularly other medications. Patients with mild depression may be helped by individual or group counseling with a mental health professional. More intense depression will likely require pharmacologic management in addition to counseling.
Recognizing the symptoms in people with terminal illness and referring them for appropriate treatment can greatly improve their quality of life.
Anger is common during terminal illness. Patients may express anger at the illness, the side effects of medications and other treatments (or the failure of same), disruption in life plans, changes in social role and lifestyle, and the prospect of death. Validating that anger is a normal reaction to terminal illness can open a discussion of how to deal with the anger and make the most of the time remaining.
LOSS, GRIEF, BEREAVEMENT
Life is filled with losses, some minor (lost car keys), some major (job loss), some physical and tangible (losing hair during chemotherapy), others psychological and intangible (losing social contacts). Loss may be sudden and unexpected or anticipated and predicted. The meaning or value of what is lost to the individual determines the feelings that result. Aging and the end of life involve a succession of losses, concluding with the ultimate loss—loss of self. The losses can include:
- Loss of physical strength and abilities
- Loss of mental abilities (confusion/dementia)
- Loss of relationships
- Loss of self-esteem
- Loss of body image
- Loss of independence
- Loss of control over life plans and lifestyle
Experiencing multiple losses often leaves insufficient time to grieve those losses and creates feelings such as hopelessness, withdrawal, isolation, and anger. Physical weakness and/or pain can also diminish the ability to cope with loss.
Grief is the normal human response to loss, and it is universal, individual, and unpredictable. Researchers have described various stages of grief, but people do not always move through such stages sequentially or predictably. Instead, each person progresses at his or her own pace and may recycle through one or more of the stages, which include:
- Shock and numbing
- Yearning and searching
- Disorganization and despair
- Some degree of reorganization
An individual’s experience of grief is determined by his or her values, cultural norms, and circumstances. In uncomplicated grief, an individual is able to move through the stages and emerge from the grieving process. Complicated grief (also called chronic grief or dysfunctional grief) is an exaggeration of the normal process of grieving, often resulting from multiple losses and making it difficult for an individual to reorganize and move on.
The dying patient and the family experience anticipatory grief, a process of working through their intellectual, behavioral, and emotional responses to what the expected death will mean when it happens. During this process, families often try to resolve personal and family issues, offer love and support, involve the dying person in plans for a memorial service, and determine any last wishes not yet spelled out in a legal document.
Bereavement is being deprived of someone through death and the feeling of desolation that follows. For example, a bereaved husband has been deprived of his wife through death. The term can also be applied to families, communities, and even an entire nation. Natural disasters, for instance, cause thousands of deaths and lead to many bereaved family members and loved ones all around the world. The term bereavement does not define the types of emotions, attitudes, or behaviors that occur.
Religion and Spirituality in End-of-Life Care
National and international palliative care guidelines acknowledge the importance of religion and/or spirituality in illness, particularly at the end of life, and support care that attends to the spiritual needs of patients (National Consensus Project, 2013). Religious and spiritual beliefs and practices are highly individual, although research shows some racial/ethnic similarities.
Blacks and Hispanics are more likely to consider religion/spirituality (R/S) more important than whites. Some South Asian faiths believe that prolonging the dying process and interfering with clarity of consciousness ought to be avoided. Muslims believe that death marks the transition from one life to another, and that the treatment of terminal pain is permissible under the distinction of intended actions (Samanta, 2013).
Autonomy in end-of-life decisions is an important concept and relates directly to a person’s religious beliefs. A faith-based psychological coping framework is as necessary as adherence to a more formal religious doctrine in providing patients and their families with effective coping mechanisms at the end of life. The greater the self-reported religious beliefs, the more optimistic individuals are in their perceptions of outcomes, including greater conﬁdence in treatment efﬁcacy (Ford, 2012).
Decisions such as whether to withdraw or withhold life-sustaining treatment, to palliate symptoms, or to initiate terminal sedation require consideration of a patient’s religion and belief. Perceived or real, inability to perform end-of-life rituals of religious significance can have negative and enduring repercussions that are significant in that spiritual needs may be unrecognized by health professionals.
A study of patients with advanced cancer identified five aspects or themes of R/S that need to be addressed in meeting patients’ end-of-life needs: coping, practices, beliefs, transformation, and community. Patients felt that their faith helped them cope with the cancer experience and that practices such as prayer, both alone and with others, were meaningful. They believed that the trajectory of their lives was God’s will but that they should do their best to live right. They felt that their R/S had transformed how they experienced cancer and the end of life, and depended on support from their faith community. Understanding these themes and incorporating them into care can improve the quality of life of dying patients (Alcorn et al., 2010).
Family Caregiver Burdens
Our country has been shifting responsibility for caregiving back to families… . Most families take on this responsibility without the necessary education and support, and the resulting stress compromises their health.
—Diana J. Mason (2008)
Family caregivers make up a “shadow workforce” that bears an enormous burden during end-of-life care of a loved one. They play a major role in actual patient care and in decision-making about care provided by others. Tolkacheva and colleagues (2011) found that informal caregiver networks helped ease the multiple burdens placed on primary caregivers. This may include other family members, church groups, neighbors, or volunteer respite workers.
Rabow and colleagues (2004) identified five burdens of family caregiving that health professionals should be aware of when communicating and interacting with the family:
- Time and logistics
- Physical tasks
- Financial costs
- Caregiver emotional burdens and mental health risks
- Physical health risks for caregivers
TIME AND LOGISTICS
Caring for a spouse or other family member with serious illness is time-consuming and demanding. Whether caregiving takes a few hours per week or 12 hours a day, the responsibility is continuous. Coordinating medications, treatments, and social services and possibly tending to the needs of other family members can be overwhelming and exhausting.
The majority of family caregivers are middle-aged or older women who may not have the training or physical stamina necessary to lift, move, or turn terminally ill loved ones. Without professional help, they risk physical injury. Clinicians need to anticipate this risk and offer assistance with physically strenuous aspects of care.
Even though the Medicare hospice benefit relieves some of the financial burden of serious illness, families can still face severe economic consequences. Many caregivers must give up their paying job or make major life changes. Nearly one third of caregivers lose most or all of their family savings due to a loved one’s illness. In our society, African Americans and Hispanic Americans face greater economic hardship from caregiving. Some patients may make choices about care solely to avoid being a burden to the family, such as choosing only comfort measures over life-extending care.
MENTAL AND PHYSICAL HEALTH RISKS
Caregivers experience many emotions, ranging from sadness, resentment, anger, and a sense of inadequacy, to deep gratitude for being able to care for the loved one. Physical exhaustion, economic worries, disrupted routines, and seemingly endless responsibilities can lead to mental health problems such as anxiety and depression. Inadequate or interrupted sleep is also common among caregivers, as is loss of social and leisure time.
Health problems related to caregiving are most pronounced among those with limited education and can include increased risk of cancer as well as increased mortality, particularly among older adults (Tolkacheva et al., 2011). Referring the patient for respite care can offer caregivers much needed relief and time to take care of themselves.
SUPPORT AND EDUCATION FOR CAREGIVERS
Caregivers often don’t recognize what their own needs are. It’s hard to ask for anything for yourself, and so physicians and community-based service providers need to be proactive in asking of the informal caregiver, “How are you doing?” because that’s going to impact the whole family.
—Mary Jo Gibson (2007)
The negative health effects of caregiving can be at least partially alleviated by thorough assessment of caregiver needs leading to a care plan with support services. Respite care, caregiver support groups, and skills-training interventions can further reduce caregiver burden. A prospective study of dementia caregivers showed that the benefit of these interventions extended beyond coping with their loved one’s illness to reducing the incidence of complicated grief after the loved one’s death (Tolkacheva et al., 2011).
END-OF-LIFE CARE FOR SPECIAL POPULATIONS
The Patient Who Has Cancer
There are estimated to be over 13 million people currently living with cancer in the United States (NCI, 2013c). Cancer is now the leading cause of death in Americans under age 85. About 1 in 3 women and 1 in 2 men will develop cancer during their lifetime. Although earlier detection and newer therapies have improved 5-year survival rates for many types of cancer, 1 in 4 Americans will die of cancer (NCI, 2010a).
- Estimated new cancer diagnoses in 2013: 1,660,290
- Estimated cancer deaths in 2013: 580,350
Even when cure is no longer possible, many people with advanced cancer and their healthcare practitioners continue chemotherapy and radiation treatments into the last month of life. Although hospice use is increasing, many cancer patients are entering hospice care just days before death. Difficulty in determining prognosis has been cited by physicians for failing to refer patients to hospice. Many nurses may not be comfortable discussing end-of-life treatment options with patients with life-limiting illnesses, such as advanced cancer (Hill & Hacker, 2010). Therefore, education for healthcare practitioners about the end-of-life care options for patients and their families is needed so that providers can offer information about possible alternatives to aggressive treatment.
People with terminal cancer have the same physical and emotional needs as any dying person, not the least of which is pain management and its side effects. Not every person with terminal cancer experiences excruciating pain, but it is not uncommon. Other physical needs arise as the disease progresses, affecting all major body systems, and should be managed based on the goals of patient comfort and quality of life.
The person with advanced cancer may also be suffering the effects of chemotherapy and radiation therapy. A recent study showed that people with cancer “face more precipitous end-of-life challenges to quality of life than do other terminally ill persons.” Healthcare professionals need to discuss these issues with the patient and family so they may be better prepared for the time ahead (Downey & Engelberg, 2010). The person with advanced cancer faces special problems.
DISRUPTION OF FUNCTION
As cancer metastasizes to liver, lungs, bone marrow, brain, bowel, or adrenal glands, it disrupts the function of those organs. For example, liver metastases can impair digestion and cause nausea and vomiting. Cancer that has metastasized to the bowel can interfere with elimination, even to the point of fecal impaction. Brain tumors increase intracranial pressure as they grow and can cause changes in mental status, vomiting, headache, dizziness, and seizures. Growth of metastatic breast, lung, or prostate cancer may compress the spinal cord and lead to irreversible paraplegia if not treated by radiation to shrink the tumor. Decisions concerning whether and how to treat these complications should involve the patient and the family as well as clinicians.
Most people with cancer are at least mildly anemic, but chemotherapy and radiation therapy can exacerbate the problem. Erythropoietin (Epogen) has been used to treat the anemia; however in 2010, the Food and Drug Administration (FDA, 2010b) issued a safety announcement indicating that the use of Epogen and other erythropoiesis-stimulating agents (ESAs) such as Procrit and Aranesp can increase the risk of tumor growth and shorten survival in patients with cancer. ESAs can also increase the risk of heart attack, heart failure, stroke, or blood clots in patients who use these drugs for other conditions.
The FDA requires that all ESAs “be prescribed and used under a risk management program, known as a risk evaluation and mitigation strategy (REMS), to ensure the safe use of these drugs.” A medication guide explaining the risks and benefits of ESAs must be provided to all patients receiving ESAs. Only hospitals and healthcare professionals who have enrolled in and completed a special training program on ESAs are permitted to prescribe and dispense ESAs to patients with cancer.
Cancer that metastasizes to the bone marrow can cause leukopenia (decreased leukocyte count), which increases the risk of infection, and thrombocytopenia (decreased platelet count), which increases the risk of hemorrhage. For example, liver metastases may rupture spontaneously and cause hemorrhage.
Anorexia is loss of appetite, which may be related to both physiological and psychological factors. Cachexia is a malnutrition syndrome that includes anorexia; early satiety (feeling of fullness after only a few mouthfuls of food); weight loss; anemia; weakness; and alterations in taste and in metabolism of proteins, lipids, and carbohydrates. Cachexia results in wasting and emaciation and is one of the leading causes of death in cancer patients.
Hypercalcemia is an elevated level of serum calcium and the most common life-threatening metabolic disorder associated with cancer. Hypercalcemia can occur in nearly 20%–30% of cancer patients at any stage of the malignancy. Some types of cancerous tumors (particularly lung and breast tumors and multiple myeloma) as well as bone metastases produce excess amounts of parathyroid hormone. When serum calcium levels exceed the kidneys’ ability to excrete the excess calcium, nausea and vomiting, constipation, muscle weakness, and dysrhythmias result. Diagnosis and timely interventions can be lifesaving in the short term and may improve the patient’s compliance with primary and supportive treatments as well as improve quality of life.
Untreated hypercalcemia leads to loss of consciousness, coma, and death. Depending on the therapeutic goals determined by the patient, the family, and the responsible clinicians, this course of events may represent a preferred timing and/or mode of death when compared with a more prolonged death from advancing metastatic disease. It is important to consider this option long before the onset of hypercalcemia or other metabolic abnormalities that impair cognition so that the patient may be involved in the decision-making (Ata et al., 2013).
Pleural effusion is the accumulation of fluid in the pleural space, which can cause pain and difficult breathing. Thoracentesis (needle aspiration) to drain the fluid, which may be a liter or more, relieves the pain and facilitates breathing.
The Patient Who Has Dementia
The widespread misconception that hospice care is only for cancer patients has created a barrier to seeking hospice care for people with other terminal conditions. People with Alzheimer’s disease or other dementias account for only 12.5 % of the annual hospice census (NHPCO, 2013a).
Psychiatric management fits well with palliative care. Near the end of life, dementia patients may experience agitation, psychosis, depression, and delirium that may require judicious use of psychopharmacology. Patients often experience pain but may only be able to communicate this through behavioral changes, increased vital signs, and expressions. The palliative care approach emphasizes relieving suffering. Applying this philosophy to advanced dementia acknowledges that the patient has a limited life expectancy and is not likely to benefit from an aggressive approach to comorbid conditions (Casey, 2011).
Health professionals need to educate families about the benefits of hospice care for their loved one and for themselves. Decisions about end-of-life care for people with Alzheimer’s disease or other dementia should be made as soon as possible after diagnosis while the patient is able to express personal wishes and participate in decisions.
Referral to the local chapter of the Alzheimer’s Association can help families find attorneys who specialize in elder law or estate planning. This referral should not be made abruptly but as a suggestion, emphasizing that every adult, regardless of health status, should make such a plan. This helps ensure that an individual’s wishes are respected in end-of-life care and in the disposition of property after death. Otherwise, families will need to make difficult decisions without knowing the patient’s wishes.
Chronic pain is as prevalent among people with dementia (almost half) as among the elderly in general. Failure to detect pain is especially apparent among those with severe cognitive impairment. Pain in older people is mainly due to degenerative disease of the joints and spine, neuropathic pain, fractures, and cancer. Patients with dementia may not always be able to verbally communicate their pain. Verbal and visual self-report scales, face pictures and bedside observation of posture, guarding, facial expressions, and behavior during usual activities may indicate an increase in the pain level. People with dementia are less able to tolerate opioids and other systemic chemical analgesics because of atrophied brain and body size and aging organs that function less efficiently (Flegel, 2013).
NUTRITION AND HYDRATION
In the late stages of dementia, patients may become unable to consume sufficient oral feedings to prevent weight loss. When the patient loses the ability to swallow, he or she is considered terminal. This is a normal occurrence in the final stages of Alzheimer’s disease. Most patients with advanced dementia have a low metabolic rate due to physical inactivity. This can be confirmed by weighing the patient every four weeks. If he or she is maintaining a constant body weight, this rules out starvation and any medical indication for tube feeding. Miyamoto and colleagues (2011) found that patients with dementia had significantly lower body weight than those with no cognitive deficit. A later study showed a 14% decrease in expended energy in the patients with dementia.
If the patient’s advance directive indicates that he or she does not want artificial nutrition and hydration (ANH), caregivers and health professionals must respect that decision. However, if the decision was not made earlier, the patient’s surrogate or proxy decision maker, together with the physician and other members of the healthcare team, must decide together whether to initiate tube feedings. When nurses and other healthcare practitioners are well-informed about ANH issues, they are able to guide family members who have to make decisions for their older relative with dementia.
Families of people with advanced dementia need to understand that their loved ones are unlikely to benefit from tube feeding, either in terms of survival or quality of life. On the contrary, tube-fed patients with dementing illnesses “typically die within a year, have increased lung infections, and show increased agitation requiring more use of physical restraints and sedation, which in turn results in more instances of painful skin breakdown” (Watson, 2011).
The Patient Who Has HIV/AIDS
The CDC estimates that 1,148,200 persons aged 13 years and older are living in the United States with HIV infection. HIV/AIDS remains an incurable disease, killing approximately 15,000 people in the United States each year (CDC, 2013b). More effective treatments for HIV/AIDS and for opportunistic infections have made the disease trajectory far less predictable. This has increased the difficulty of making decisions about advance care and end-of-life issues.
Although patients with HIV/AIDS agree that advance care planning is important to clarify end-of-life issues, most stated that they have not signed advance directives and that their families are not aware of their wishes. In one study (Garvie et al., 2012), subjects overwhelmingly responded as important: being free of pain, not being a burden on their families, being at peace spiritually, and knowing how to say good-bye. About half of the subjects expressed desires to remain off of life support and to die a natural death.
In advanced AIDS, the patient may suffer both the late effects of the disease itself as well as treatment-related toxic effects. The combined effects include fatigue, weakness, memory loss, and continuous diarrhea, which together necessitate around-the-clock care. If family or friends are unavailable to provide care, the services of home health aides are required. These aides need to be informed about whether the patient has a DNAR order in effect and whether the patient wishes to be hospitalized.
The person living with advanced AIDS has some of the same psychosocial concerns as patients with any terminal illness, including financial issues, bereavement issues, and fear of death. In addition, the individual may have unique issues related to HIV/AIDS, which can include:
- Stigmatization related to HIV/AIDS
- Fear of contagion and disfigurement
- Fear of social isolation and abandonment
- Guilt about past sexual behaviors
- Lack of traditional support systems
- Bereavement from multiple losses
Many lack the traditional support systems of friends and families. Friends may be HIV-infected themselves. Others may be afraid of contagion, based on ignorance about HIV transmission or unresolved homophobia. Families may live far away, since many people with AIDS have migrated to large urban areas that are more tolerant of nontraditional lifestyles, perhaps leaving them without a support system when their disease progresses.
Grief and bereavement issues are intensified in many people with AIDS because of multiple losses. People with advanced AIDS may have lost many friends to this disease and have others concurrently coping with HIV. These various losses can occur close together, leaving no opportunity for resolution. One-on-one counseling or a grief support group can help the bereaved patient and afford an opportunity to discuss his or her own concerns and fears about the death of a friend or loved one.
Dying Children and Their Families
Suffering is nearly universal in pediatric cancer patients and their families. Addressing that suffering is an ethical imperative.
—Baker et al. (2008)
Learning that their child has a life-threatening illness is one of the most unnatural and difficult events in any parent’s life. Yet each year parents across the United States confront this tragedy as 50,000 children die from life-threatening conditions: extreme prematurity, severe birth defects and congenital anomalies, cancer, HIV/AIDS, progressive metabolic disorders, and other diseases and disorders. The current infant mortality rate (meaning death occurs before the first birthday, generally from conditions existing at birth) is 5.9 per 1,000 (CIA, 2013).
The remarkable resilience of children can make it difficult to predict whether treatment of life-threatening conditions will end in cure or death. More than half a million children in the United States are coping with complex chronic and life-threatening conditions. These children and their families need and deserve palliative care beginning at the time of diagnosis so that treatment is not limited to the disease process itself. This gives families more time to cope with the possibility that their child will die even as they hope for cure. If it becomes clear that cure is no longer possible, the child may be able to receive hospice care at home rather than in the hospital.
For example, Massachusetts has a Pediatric Palliative Care Network of hospices that provide free palliative care to children (under 18 years old) with potentially life-limiting illnesses and their families, not just those who have a 6-month prognosis. It offers a total approach to care—physical, psychological, social, and spiritual. Services include pain and symptom management for the ill child, counseling and spiritual care for parents and siblings, and volunteer assistance with errands (Pediatric Palliative Care Network, 2013).
Physical care of the dying child is focused on comfort, using the least-invasive procedures while protecting privacy and dignity. A child with terminal illness has the same physical needs as any seriously ill child, including pain management, regular sleep and rest, nutrition, maintenance of bowel and bladder function as well as respiratory function, and skin care. Additionally, several studies have shown a high degree of symptom burden in children with terminal illness in the last few weeks of life. These symptoms include pain, dyspnea, fatigue, lack of appetite, nausea and vomiting, constipation, and changes in sleep patterns (Shaw, 2012).
Children who are dying share the same fear of pain as adults with terminal illness. Even infants feel pain. Care providers need to talk with the family about pain management before the need becomes severe. Parents are greatly concerned that their child not suffer at the end of life. When pain or other symptoms are not treated or are treated unsuccessfully in their dying child, parents are likely to experience long-term distress. For most children pain control can be achieved using standard dosing with medications such as opioids and benzodiazepines (Shaw, 2012). Families who express concerns about addiction from narcotic pain medication need to be reassured that there is no evidence to support the idea. Like adults, children may develop a tolerance to sedatives and opioid medications, so that the dosage or the choice of drugs may need to be changed.
COMMUNICATION WITH PARENTS
Parents of children who have life-threatening conditions want to be kept informed about their child’s condition and what to expect throughout the course of the illness. They may also want information about caring for their child at home and about how to support siblings of the ill child.
Linguistic and cultural differences may prove especially challenging in pediatric palliative care. These issues can interfere with parents’ ability to participate fully in their child’s care and “contribute to frustration, anger, and sadness for parents long after their child’s death” (Davies et al., 2010). Therefore, healthcare practitioners need to ensure that all parents receive clear factual information and that the family can understand and respond to questions and emotional concerns. This fosters trust in the relationship and reduces distress and anxiety in the parents and family.
PATTERNS OF INFORMATION SHARING
Researchers (Davies et al., 2010) interviewed Chinese and Mexican parents who had experienced the death of a child about information shared by practitioners (primarily physicians) during their child’s illness. Nurses, social workers, chaplains, interpreters, and other parents were also important sources of information.
The parents’ responses revealed four patterns of information sharing:
- No information
- Basic information
- Basic information plus implications
- Basic information plus implications plus attention to parents’ questions, concerns, and emotions
Parents who spoke little or no English feared asking questions because they were afraid the practitioner would answer in English and that they wouldn’t understand or be able to respond in English. Some were not told about hospital services such as interpreters or social workers. Other parents felt ignored. Parents given no information reported feeling lost, alone, and “in the dark” about what to do. Those who felt ignored were frustrated and angry, although some parents believed it was their own fault because they could not communicate with practitioners.
Parents given only basic information didn’t always understand the implications. As one said, “They told us she would probably die, but they didn’t say, ‘This is how she’s going to die.’ I’d never seen anyone die, let alone my infant.” Like those parents who were given no information, they reported feeling powerless, distressed, and fearful.
Parents who received basic information plus implications felt better able to make decisions and less distressed and angry. In some cases, family doctors were better at explaining things than doctors in the hospital.
Healthcare practitioners who offered not only basic information and implications but also addressed parents’ questions, concerns, and emotions were most helpful to parents. One mother said, “He was always there to tell us bad news. He cared about what you were going through. He made sure you understood. He asked, ‘Do you know what this means?’ or ‘Do you need to know anything else?’”
END-OF-LIFE ISSUES FOR INFANTS
Advances in medicine, surgery, technology, and skilled nursing care have vastly improved the survival of premature and other high-risk infants. However, sometimes the very best care and the strongest hopes and prayers are not enough to save these fragile lives.
The child who dies before age 1 will likely have been hospitalized for much of his or her life. The challenge for health professionals is to make that time as comfortable and meaningful as possible for the infant and the family, supporting their need to be together, to touch each other, to create shared memories, and to help them prepare for the loss ahead.
Parents need a nurse or physician who can provide an overview on the infant’s condition every day. This helps avoid misunderstandings from fragmentary information. Parents need to know that it’s okay to ask questions and expect honest, understandable answers about what’s going on. Other children in the family as well as the grandparents also need to be involved. Taking photographs of the infant with family members is important, particularly for those parents whose infant will never get to go home with them.
COMMUNICATING WITH CHILDREN
Children with a terminal illness still enjoy age-appropriate play activities—games, drawing, coloring, seeing friends. School-age children who are able to attend classes should be encouraged to do so to maintain a sense of normalcy and stay connected with their peer group. Frequent absences are common, but some children want to continue their studies at home as long as possible.
The dying child and the family need to try to talk about death with each other, although it can be difficult and painful. Parents worry that talking about death will cause the child to lose hope and thus the will to live. But keeping the diagnosis secret denies the child’s right to express feelings, fears, and questions. Children pick up cues from parental and/or sibling behavior that something bad is going to happen, and they need to express their feelings.
There is documented evidence that all patients, even very young children, know they are dying and that they are able to recognize the exceptional distress among family and caregivers around them when death becomes close. References to its imminence can be quite direct and explicit, however most pediatric patients can tell when adults’ are having difficulty talking to them about end-of-life issues, death, and dying, and they begin to feel isolated and alienated. If an open and honest dialogue has been established from the beginning, it will be reflected in the willingness of the child or adolescent to talk about fears regarding death (Epelman, 2012).
Keeping the diagnosis secret also risks having someone else reveal the information, eroding the child’s trust in the parents. Health professionals can offer support and guidance to the parents by asking, “How will you tell your child the diagnosis?” and then suggesting how and what to tell the parents based on the child’s age. Naming the illness helps explain what to expect in terms of procedures and possible outcomes. Once the child learns the diagnosis, he or she may choose not to talk about death. Parents and health professionals need to respect that wish.
Communicating with children about death involves more than just words. Health professionals need to assess the child’s body language and encourage expressive outlets for feelings, such as drawing; play with dolls, puppets, or stuffed animals; writing stories; or working with modeling clay.
Both the child and the family generally fear what the actual death will be like, particularly whether it will be painful. The child fears dying alone; the family fears not being with the child when death occurs. Having family members nearby enhances the child’s feelings of security and safety. Physical contact—touching, hugging, holding hands—is comforting and helps the child feel more secure. When parents or siblings need to leave, it helps to tell the child when they’ll be back.
|Age Range||Concept of Death||Interventions|
|Source: Hospice Net, 2010.|
|0–3 years||None||Provide physical comfort, familiar people, favorite toys, and consistent care. Use simple language to communicate.|
|3–5 years||Believes death is not final but a kind of sleep that can be caused by “bad” thoughts. Does not see death as personal.||Minimize separation from parents. Explain that illness is not a punishment. Assess for guilty feelings and reassure if needed. Use realistic language (i.e., “dead,” “dying”).|
|5–7 years||Begins to understand death as final but does not see it as natural. May believe death is caused by the devil, God, a ghost; may see it as abandonment by the person who died.||Assess fears of abandonment. Be truthful in answering questions and explaining details.|
|8–12 years||Developing adult concepts of death. Understands that death can be personal and permanent. Asks about physiology of death.||Help child achieve control and mastery. Maintain access to peers. Involve child in decision-making.|
|12–18 years||Understands the concept of “not being.” Sees death in terms of separation and loss of security.||Reinforce child’s self-esteem. Encourage expression of feelings. Respect child’s privacy. Promote independence, participation in normal activities, and access to peers. Be truthful. Continue to involve child in decision-making.|
Ryan is a 6-year-old boy with terminal cancer who has been undergoing chemotherapy off and on for the past 3 years. He is now considered end-stage and is being discharged from the Children’s Hospital pediatric hematology/oncology (Hem/Onc) unit to go home for hospice care. His oncologist, Hem/Onc nurse, and parents have explained the situation honestly and at a level he can understand, creating an open climate where he feels able to ask any questions or express any concerns.
Ryan is happy to be going home and in knowing that he will not have to come back to the hospital or undergo chemotherapy again. He understands that he will soon die and believes he will go to heaven and be able to “look down” on his family and friends. He tells his primary nurse good-bye and thanks her. He has told his parents he is afraid of being alone when “dead comes,” and they have reassured him that someone from his family will be with him at all times. An organization called the Carousel Fund in his hometown provides funds to families with catastrophic illnesses so at least one parent can be with the child.
The legal responsibility for decisions about a child’s treatment rests with parents. However, clinicians should encourage parents to involve the child in decisions about continuing treatment aimed either at cure or at moving to palliative care. Adolescents may have very definite ideas about the course their treatment should take.
Both the child and the family need to understand what palliative care means. For example, they need to know the risks as well as the potential benefit of CPR. Clinicians should explain that “no code” does not mean “no care” but just a different kind of care aimed at comfort and maximum enjoyment of the time they have left with their child.
Children are not covered by the Medicare hospice benefit. Consequently, hospice care for children can impose a tremendous financial burden on families, which is one reason why so few children under age 17 are in hospice care. Medicaid, a jointly funded federal-state health insurance program for people who need financial assistance for medical expenses, must provide home care services to people who receive federal income assistance such as Temporary Assistance to Needy Families (TANF).
Medicaid coverage includes part-time nursing, home care aide services, and medical supplies and equipment. Information about coverage is available from local or state welfare offices, state health departments, state social services agencies, or the state Medicaid office.
Care of the family should extend into the bereavement period. If the child is enrolled in hospice care, bereavement support for the family is part of the service provided. However, if the child dies in the hospital, there may not be a formal bereavement care program available.
The physical effects of grief on a family following the death of a child can include alteration in sleep patterns and changes in weight. The emotional and psychological effects can include failure to accept reality, decreased self-esteem, mood swings, preoccupation with the deceased, resentment, and guilt. Social effects can be isolation from spouse, family and/or friends, and withdrawal from normal activity (Gibson et al., 2011).
Contro and Sourkes (2012) conducted a study on the bereavement care program in a university-based children’s hospital that served as a needs assessment to expose needed improvements in the program. The areas studied included disparities in bereavement care based on continuity in family follow-up; needs of siblings and other family members; staff communication, cooperation, and care coordination; staff suffering; and education, mentoring, and support for staff. The study results highlighted the need for more sustained bereavement care, better support of siblings, and the need for support of grieving staff.
An average of 680,000 veterans are dying every year and account for 25% of all deaths in the United States (Smith, 2012). Many are World War II veterans now in their eighties. Only 4% of veterans die in VA facilities. Most die either at home, in a nursing home or assisted-living facility, or in a residential hospice.
Veterans’ benefits include palliative care and hospice care, but some veterans may not know about or understand these benefits (Smith, 2012). Although local VA medical centers have the flexibility to address end-of-life care according to veterans’ needs, national policy and standards stipulates that each VA facility have the following resources and services:
- A designated hospice contact person who is part of an integrated network for local and national communications and information dissemination
- Provision of needed hospice services in all settings
- Inpatient hospice beds or access to them in the community
- An interdisciplinary palliative care consultation team
- Assistance with referrals to community hospices in its service area
- Tracking of hospice and palliative care services provided to veterans in all settings
Veterans’ preferences on end-of-life care may differ from the preferences of non-veterans. One study (Ganzini et al., 2010) found that in veterans undergoing palliative care, 58% had an advance directive, 63% had a physician order to forgo cardiopulmonary resuscitation, 55% were hospice enrolled, and 27% died in the hospital. Veterans who were mentally ill were three times as likely (15% compared to 5%) to have physician orders for lifesaving measures.
Health professionals need to be aware that veterans dying in the VA system may have a higher degree of social isolation, lack of family support, or lower income than those outside the system. In addition, military training may have created in them an attitude of stoicism and a barrier to admitting pain or requesting pain medication. On the other hand, being in a hospice with other veterans offers a camaraderie that can be comforting.
Showing respect for a veteran and acknowledging service to the country is a first step in establishing a relationship. Simply asking, “What branch of the service were you in?” can be a key assessment question. Other factors that influence experiences at the end of a veteran’s life include age, whether enlisted or drafted, rank, and combat or POW experience. More than 1,600 hospices across the country participate in the We Honor Veterans campaign every year (NHPCO, 2013b).
DEATH OF THE PATIENT
The Final Hours
Care during the last hours of life, called active dying, can have profound effects on the patient, the family, and healthcare practitioners who attend the dying. As Emanuel and colleagues (2010) wrote, “At the very end of life, there is no second chance to get it right.”
Some hospices have responded to this need with vigil programs, which train volunteers to serve as companions for families during the final hours. These specially trained volunteers are called doulas, a Greek term used for years to describe women who serve as home birth attendants, assisting midwives and mothers, “but the guiding philosophy is the same and borrows from Eastern religions: to honor the end of life as well as the beginning” (Corporon, 2011). These doulas of death teach families what to expect during active dying and coach them through the process.
SIGNS OF IMMINENT DEATH
Certain signs and symptoms indicate when death is near (see table below). Not every patient experiences each of these signs and symptoms, and the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. The final stage of dying may take from 24 hours to as long as 10–14 days.
When it is apparent that death is imminent, health professionals need to alert the family and confirm the goals of care. This discussion should be documented in the patient’s chart, including the observation that the patient is dying.
|Signs and Symptoms||Interventions|
|Source: NCI, 2013d.|
|Drowsiness, increased sleep, or unresponsiveness||When speaking, remember that the patient may be able to hear even if there is no response. Advise family members to address the patient as though he or she can hear. Do not shake the patient if he or she does not respond.|
|Confusion about time, place, and/or identity of loved ones; hallucinations about people and places not present||Gently remind the patient of the time, date, and people who are present. Be calm and reassuring.|
|Decreased socialization and withdrawal||Speak to the patient directly and offer reassurance that he or she is not alone. The patient may need permission from the family to “let go.”|
|Decreased need for food and fluids; loss of appetite||If the patient can swallow, offer ice chips, water, or juice. Keep the patient’s mouth and lips moist with glycerin swabs and lip balm.|
|Loss of bladder or bowel control||Keep the patient as clean, dry, and comfortable as possible. Use disposable pads on the patient’s bed and remove them when soiled. If urine output is excessive, a catheter may be used. In the case of continuing diarrhea, a rectal tube may be used.|
|Darkened urine or decreased amount of urine||A catheter may be necessary to avoid blockage.|
|Body temperature lowers; skin cool to the touch, particularly extremities; skin color darkens to a grayish hue; fingernail beds appear cyanotic||Use blankets to warm the patient, who may not be aware of feeling cold. (Do not use electric blankets or heating pads, which can cause burns.)|
|Rattling or gurgling breath sounds; irregular or shallow breathing; fewer breaths per minute; breathing that alternates between rapid and slow (called Chenye-Stokes respiration)||Turning the patient’s body to the side and placing pillows beneath the head and behind the back may ease breathing. Supplementary oxygen may benefit some patients. If the patient can swallow, offer ice chips. A cool mist humidifier may make breathing more comfortable.|
|Turning the head toward a light source||Leave soft, indirect lights on in the room.|
|Increased difficulty controlling pain||Provide pain medications as prescribed. Advise the primary care provider if dose seems inadequate. Gentle massage and relaxation techniques may help with pain.|
|Myoclonus (involuntary movements), changes in heart rate, loss of reflexes in arms and legs||When myoclonic jerking is severe, drugs may be used to calm the patient down, relieve anxiety, and help the patient sleep.|
SIGNS OF DEATH
Signs that death has occurred include:
- Lack of respiration or pulse
- Eyes open but do not move or blink; pupils dilated
- Jaw relaxed; mouth slightly open
- Bowel and bladder contents expelled
- Patient does not respond to touch or speech
- Skin color becomes pale and waxen in appearance
- Body temperature drops
- Sound of internal fluids trickling or gurgling
When death has occurred, nurses or other clinicians need to express their sympathy to the family. It is enough to say, “I am sorry for your loss.”
Agnes, an elderly woman, had been discharged from the hospital to her home to spend her last days in comfortable, familiar surroundings, per her written wishes. Her grandson asked the hospice nurse, “How can we be sure that my grandmother has passed?” The nurse explained that the breathing may become slower, shallow, and loud, even sound like gasping. She showed the grandson where to feel for radial pulse in the wrist and explained that he would be unable to feel it when the heart stopped beating. The nurse told him that all of the muscles would relax and this might appear as open eyes, a slack jaw, and incontinence of the bowel and bladder. The skin would become cool, pale, and waxen. When that happened, the grandson was instructed to call the hospice nurse.
Death must be certified by a physician in a formal process called pronouncement and the findings related to cause of death documented in the patient’s medical record. Pronouncement may be done by a physician, nurse practitioner, nursing supervisor, or hospice nurse, depending on the state regulations and the policies of the agency involved. Unless the death occurred under unusual circumstances, an autopsy (postmortem surgical examination) is not usually required.
CARE OF THE BODY
Care of the body after death is often the responsibility of nurses. How the body is cared for after death is often influenced by religion and/or culture, so health professionals should be aware of any preferences or limitations and comply with them.
If the family was not present at the time of death, the nurse or other responsible practitioner may make the body and the environment appear as normal as possible for the family to visit. If the patient or family has chosen cremation, or if there is no open-casket service planned, this will be the final opportunity for them to see their loved one.
All equipment and supplies are removed from the bedside and any soiled linens removed from the room. Local regulations may differ on how to deal with tubes that were in place at the time of death. Generally, the coroner must be notified, and no internal tubes can be removed until the patient is cleared by the coroner’s office.
Placing the body in a supine position with a pillow under the head and shoulders avoids discoloration of the face. Eyelids are closed (holding them closed for a few seconds helps them to remain closed). If the person wore dentures, those are inserted to give the face a more natural appearance. Placing a rolled towel under the chin will hold the mouth closed. The arms are positioned either at the sides of the body or across the abdomen. The identifying wristband is left on unless it has become too tight due to fluid retention.
Any soiled areas of the body are washed and absorbent pads are placed under the buttocks. A clean gown is placed on the body and the hair is brushed or combed. Any jewelry is removed, except for a wedding band, which is taped to the finger. The body is carefully covered up to the shoulders with clean bed linens. All belongings of the deceased are listed and placed in a safe storage area for the family.
Soft lighting is generally preferred, and chairs may be made available for family members. Clinicians need to reassure family members that they should take as much time as they need to say their last good-byes. Only when the family leaves the room should final preparations for removal of the body be initiated.
REMOVING THE BODY
After the family has viewed the body, the care provider attaches additional identification tags, one to the left great toe, another to the wrist (if the deceased person’s wristband has been removed), and one on the patient’s belongings. The entire body is then placed in a white, plastic body bag, and another identification tag affixed to the outside zipper. Then the body is either picked up by the responsible mortician (undertaker) or sent to the morgue until arrangements are made with a mortician.
Some hospitals or other agencies close the doors to all patient rooms before transporting a body through the corridors and require the use of service elevators rather than public elevators during this transfer.
Autopsy is no longer a routine procedure in most hospitals, and in 1995 the National Center for Health Statistics ceased collection of autopsy statistics. Only about 5% of deaths nationally undergo autopsy, even though this procedure contributes to medical education, aids in the characterization of newly emerging diseases, and advances the understanding of disease-related changes. In addition, autopsy can reveal errors in clinical diagnosis. One study showed that:
Clinical diagnoses, whether obtained from death certificates or hospital discharge data, contain major inaccuracies compared with autopsy diagnoses. The healthcare system as a whole can thus benefit enormously from autopsy data, by substantially enhancing the accuracy of vital statistics, which play important roles in research, funding, and other policy decisions (Shojania et al., 2002).
In the event that autopsy is required, health professionals need to determine whether the family has any religious or cultural concerns about this procedure. Families also need to know that autopsy does not disfigure the body and would not interfere with having an open-casket service.
The growing disparity between organ availability for transplantation and the number of patients in need has challenged the donation and transplantation community. The number of organs available for transplantation has been a relatively ﬁxed national resource over the last decade. By contrast, the national waiting list rises by thousands each year, with only a fraction of those waiting receiving lifesaving transplants. There are 58 organ procurement organizations (OPOs) in the United States that have taken on the responsibility of harvesting donor organs and matching them with potential recipients (Goldstein et al., 2012).
One organ donor may save up to eight lives (U.S. DHHS, 2011). The public has a generally favorable attitude about organ donation for transplants; however, not every clinician broaches the subject with patients since they may perceived as being more an advocate for the organ recipient than of their patient.
Ideally, questions about organ donation are discussed with the patient in the context of advance directives. This relieves the family of making the decision during the stressful time immediately after death. Unless the patient has documented the wish to become an organ donor, the family must decide. Federal law requires that only a designated representative of an OPO or a “designated requestor” may approach the family about organ donation. A designated requestor may be a physician or other health professional who has completed a course approved by an OPO on how to approach potential donor families to request organ or tissue donation.
THE FAMILY’S BEREAVEMENT
Care does not end until the family has been supported with their grief reactions and those with complicated grief have been helped to get care.
—Emanuel et al. (2010)
A family’s bereavement begins when their loved one is diagnosed with terminal illness, initiating a period of anticipatory grieving for both patient and family. After the patient dies, family members continue to grieve until they become reconciled to life without the deceased. For some, the process may take weeks or months; for others, grieving may take a year or longer. The Medicare hospice benefit includes bereavement care for the family for one year after the patient’s death.
All healthcare practitioners may encounter bereaved persons, and they need to recognize the signs of grieving and bereavement and offer appropriate support as part of care.
Characteristics of Grief
How a person grieves depends on his or her personality, relationship with and attachment to the person who died, and the situation surrounding the loss. Grief reactions can be psychological, emotional, physical, or social. Psychological and emotional reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include difficulty sleeping, appetite changes, somatic complaints, or illness. Social reactions can include feelings about taking care of others in the family, the desire to see or not see family or friends, or the desire to return to work (NCI, 2010b).
DeSpelder and Strickland (1987) identified five characteristics of grief:
- Somatic distress
- Preoccupation with the image of the deceased
- Hostile reactions
- Loss of the usual patterns of conduct
Lindemann (1994) described three tasks of what he called “grief work.” These include:
- Freedom from ties to the deceased
- Readjustment to the environment from which the deceased is missing
- Formation of new relationships
To free oneself from the deceased, a person must change the emotional energy invested in the lost person. This does not mean the deceased was not loved or is forgotten but that the grieving person is able to turn to others for emotional satisfaction. To readjust, the grieving person may need to modify his or her roles, identity, and skills to live in the world without the deceased. To form new relationships, the person redirects the emotional energy once invested in the deceased to other people and activities.
Grief work requires significant effort, so it is not uncommon for those who grieve to experience overwhelming fatigue. The grief experienced is not only for the loss of the person who died but also for the loss of wishes, plans, and fantasies that were held for the person and/or the relationship. Death often awakens emotions of past losses or separations. Bowlby (1961) described three phases of mourning: (1) the urge to recover the lost person, (2) disorganization and despair, and (3) reorganization. These phases originated from the attachment theory of human behavior, which postulates people’s need to attach to others in order to improve survival and reduce risk of harm.
When a loved one has experienced a prolonged dying process, some family members not only grieve the loss of that person but also suffer the loss of their role as caregivers. They may experience a sense of relief that the burden of caregiving has lifted as well as guilt for feeling relief. These are natural reactions, and health professionals should encourage their expression.
Health professionals who work with dying patients and their families may also grieve when a patient dies even though the death was expected. In the aftermath of the death of a patient, grief counseling in the form of a debriefing may be offered to the involved staff. Attending the funeral or memorial service may allow expression of the grief as well as show respect for the family and their loss.
Bereavement options for families include grief support groups (either self-help or facilitated by professionals) and one-on-one counseling by a psychologist, psychiatrist, clinical social worker, or clergyperson. Many online support groups are also available but should be used as an adjunct to in-person therapy rather than as a substitute. If depression occurs in the context of bereavement, medication may be appropriate. No consensus exists among professionals as to the most effective intervention. There are many books and videos available, most of them specifically focused on a particular family role (parents, children, siblings, or spouse).
Hospice professionals who work with the bereaved maintain contact with the family, make home visits, and encourage family members to talk about their feelings, emphasizing that grieving is a painful process that may take years to resolve. It is important to refer to the deceased person by name and to discuss shared memories with the family. Continuing contact with the family offers them an anchor during a difficult time. A good condolence letter offers a tribute to the deceased and comfort to the survivors.
Americans are beginning to admit that death is inevitable and that planning for end-of-life care is essential to ensuring that our preferences are respected when we can no longer care for ourselves. More people are drawing up advance directives, appointing a healthcare proxy/agent, and choosing hospice and palliative care over aggressive treatments. These changes would not have come about without the educational and outreach efforts of nurses, other health professionals, public health agencies, and private foundations.
The ranks of people over 65 continue to swell, and many of them have one or more chronic diseases. Thus, the need for high-quality end-of-life care will only increase. Nine out of 10 Americans will need weeks or months of care at the end of their lives. All healthcare professionals have a role in helping their patients and families understand the range of options available and the benefits of planning for end-of-life care before it is needed.
Patient and caregiver guides to end-of-life care (Oncology Nursing Society)
Self-help guide to planning end-of-life care (Life Before Death Project)
NOTE: Complete URLs for references retrieved from online sources are provided in the PDF of this course (view/download PDF from the menu at the top of this page).
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