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The West Virginia State Legislature passed H.B. 2815 in March 2001, which requires continuing education in end-of-life care and pain management issues for all nurses holding licenses in West Virginia. This course encompasses the basic principles of end-of-life care (also called palliative care), including pain management for the patient and the family, and offers examples of professional practice.
Nancy Evans is a health science writer and editor with more than three decades of experience in healthcare publishing. She served as senior editor at Mosby/Times Mirror, senior editor in the health sciences division of Addison-Wesley, and senior medical editor at Appleton & Lange. She is an honorary member of Sigma Theta Tau International Honor Society of Nursing. A breast cancer survivor since 1991, she currently works with Breast Cancer Fund as health science consultant. She has written and spoken extensively on breast cancer issues in the United States, Canada, Belgium, and New Zealand. Nancy co-produced (with Allie Light and Irving Saraf) the HBO documentary film Rachel's Daughters: Searching for the Causes of Breast Cancer. She is also the co-producer (with Light and Saraf) of Children and Asthma, a KQED documentary film, and the documentary, Good Food, Bad Food: Obesity in American Children.
Susan Walters Schmid, BA, MA, is a historian and editor with more than a dozen years experience gathering and analyzing information for public presentation.
Copyright © 2007 Wild Iris Medical Education, Inc. All Rights Reserved.
Upon completion of this course, you will be able to:
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
We live in a death-denying culture in which the public, and the health professionals, tend to regard death as a failure of the medical system rather than a normal stage of life. This view is a twentieth-century phenomenon. Before modern medicine, death came quickly after an accident or serious illness. Families cared for the dying at home, including preparation of the body for burial.
Death began to emerge from the closet in the late 1960s when Elizabeth Kübler-Ross pioneered multidisciplinary seminars on death and dying. Her now-classic book, On Death and Dying, found a ready audience among professionals and the public. Healthcare curricula slowly began to change, first in nursing and later in medicine, to include some content on care of the dying. The first modern hospice opened in England in 1967, and the concept soon found its way to the United States. Dame Cicely Saunders, both a nurse and a physician, is considered the founder of the modern hospice movement.
Despite these beginnings, research by the Robert Wood Johnson Foundation (RWJF), both in West Virginia and throughout the country, showed that end-of-life care was still not taught effectively to the vast majority of health professionals. Thus in the late 1990s RWJF launched a major effort to promote excellence in end-of-life care, expanding education in this vital area to thousands more healthcare professionals. West Virginia was one of seventeen states to receive funding from RWJF to address end-of-life issues.
Although end-of-life care is improving in some areas of the country, a "report card" (Last Acts, 2002) rated the American healthcare system as mediocre in caring for the dying. Among the major findings reported:
Americans are reluctant to talk about death or to express their wishes about end-of-life care. According to the National Hospice Foundation (NHF), only 24% of Americans express in writing their wishes about how they want to be cared for at the end-of-life. Nearly 20% have not thought about end-of-life care at all, while 16% have thought about it but not told anyone what they want.
In 1999 West Virginia launched a statewide effort called the Initiative to Improve End-of-life Care. A series of workshops were held throughout the state's fifty-five counties to gather feedback from residents and medical practitioners. Several key objectives were established. By 2010 the goal is to increase the percentage of West Virginians who:
In 2006, 11% of West Virginians reported having a living will, 3% reported having a medical power of attorney, and 25% had both (West Virginia Health Care Authority Annual Survey, 2006). The West Virginia Health Care Association Annual Report for 2006 indicates that use of hospice services grew in 2005 both in number of patients served (8%) and number of patient days (15.4%).
End-of-life care is important in West Virginia because it has the third highest median age of all states (40.7) and is second in the nation in the percent of its population over the age of 65 (15%). It also has the second-highest percentage of its population living in rural areas (63%), where access to hospice care is often limited. West Virginia ranks first in the nation in mortality rates for heart disease and third for mortality rates for cancer and diabetes.
We have some great examples of world-class end-of-life care in this nation. Best practice is based on best science. But these are not the prevailing practices. They are rare practices. The best is rare.
—DONALD M. BERWICK, MD, MPP
The World Health Organization (WHO) defines palliative care as follows. "Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Palliative care:
Effective end-of-life care is comprehensive, compassionate, and patient/family-centered.
Palliative care focuses on enhancing the quality of life during the time remaining, and ideally begins when a life-threatening or debilitating condition is diagnosed. Many people who do not fear death do fear the process of dying, the prospect of pain and suffering, and of being a burden to their families. Research by the National Hospice Foundation shows that the top priorities for a loved one with terminal illness are:
All those priorities are available in hospice, which is a set of services for clients and their families. Hospice is considered the gold standard for end-of-life care. In West Virginia there are at least twenty organizations providing hospice services throughout the state. 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.
Services covered by Medicare are listed below. In addition, many private healthcare plans and Medicaid in forty-five states and the District of Columbia cover hospice services. Medicare covers these hospice services and pays nearly all of their costs:
Many people mistakenly think that hospice is a place. Although there are some hospice residential facilities, most hospice care takes place in the patient's home or the home of a loved one. However, hospice care also occurs in hospitals and nursing homes.
A nursing home resident who has hospice care is much less likely to be admitted to a hospital during the last 30 days of life (Gozalo & Miller, 2006). 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 2004 had a noncancer diagnosis. While the majority of hospice patients are older people, some hospices have clinical staff with expertise in pediatric hospice care.
All Medicare-certified hospices are required to employ physicians and nurses with expertise in pain management and symptom relief. Nonpain symptoms include constipation, dyspnea, nausea and vomiting, and dry mouth. Because hospice uses a team approach, 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.
Hospice care is far less expensive than other types of end-of-life care. Hospice patients are often able to die at home. According to the National Hospice and Palliative Care Association, of the 1.2 million people who choose inpatient or outpatient hospice care, more than three-fourths die at home, in contrast to the one-fourth of the general population.
On March 10, 2007, the West Virginia legislature passed into law a provision requiring nursing homes to provide eligible residents with information about hospice palliative care. The law states that "when the health status of a nursing home facility resident declines to the state of terminal illness or when the resident receives a physician's order for 'comfort measures only,' the facility shall notify the resident with information about the option of receiving hospice palliative care. If a nursing home resident is incapacitated, the facility shall also notify any person who has been given the authority of guardian, a medical power of attorney, or health care surrogate over the resident, information stating that the resident has the option of receiving hospice palliative care" (Center for Health Ethics and Law, 2007).
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 or voluntary active euthanasia. In assisted suicide, the healthcare provider 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, 1994; Brody, 1992). Voluntary active euthanasia is a deliberate act that causes death at the request of a person incapable of causing his or her own death (Brody, 1992).
Both nurses and physicians are confronted with requests for assistance in dying. However, this practice is illegal in every state except Oregon, and even there the guidelines for practice are very stringent. Healthcare providers 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 ifit is the unintended consequence of the primary intention to provide comfort and relieve suffering.
Healthcare providers 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.
Studies of trends concerning where Americans die reveals distinct disparities. In 1980 whites and blacks died in the hospital in equal proportions, but by 1998 fewer whites than blacks died in the hospital (Flory et al., 2004). A 2002 forum highlighted other disparities in end-of-life care including lack of access to pain medicine in African American communities and poor management of pain by healthcare providers (RWJF, 2002).
Barriers to quality care also included lack of knowledge about end-of-life care options, mistrust of the healthcare system, and poor communication between clinicians and clients. Hospice care may be perceived as a luxury in some communities, even though Medicare and Medicaid benefits require little out-of-pocket expenditure.
In West Virginia, 50 of the 55 counties are designated as medically underserved and more than 20% of adults aged 18 to 64 are without health insurance. The most comprehensive hospice programs are centered in urban areas of the state. In isolated rural Appalachian communities the healthcare system is traditionally used for emergency care only.
Advance medical directives are documents containing clients' 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 clients 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.
West Virginia law recognizes two types of written advance directives for health care decision-making: the living will and the medical power of attorney, also called a durable power of attorney for healthcare, a healthcare proxy, or declaration or appointment of a healthcare agent. The living will tells your doctor how you want to be treated in case you become terminally ill or permanently unconscious. The medical power of attorney allows you to name a person to make certain medical decisions for you if you are unable to make them yourself.
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 make the decision about CPR, healthcare providers need to explain that withholding CPR does not equate with letting someone die.
The DNAR order should be posted prominently, either on the head or foot of the bed, or, if the client is at home, on the refrigerator, and specifics of the order should also be included in the client's chart. A recent study found that the reason for the DNAR order was documented in slightly more than half the charts and "concurrent care concerns," such as use of intubation, dialysis, artificial nutrition and hydration, were inadequately documented in the charts (Sulmasy et al., 2004).
The DNAR order should be readily available in the event of an emergency to ensure that the client's wishes will be honored. Some clients prefer the additional safeguard of wearing a bracelet or necklace to alert care providers that a DNAR order is in force.
In 2002 the West Virginia Health Care Decisions Act and the West Virginia Do Not Resuscitate Act were amended to incorporate the Physician Orders for Scope of Treatment (POST) form into the West Virginia Code. The POST form contains physician orders detailing CPR code or no-code status, level of intervention (comfort care, intermediate, or full treatment), and use or withholding of antibiotics and feeding tubes (West Virginia Center for End-of-Life Care, 2002). Completion of the standardized hot-pink POST forms is not required but is highly recommended for clients entering a skilled nursing facility or a hospice program. The legislation:
Decisions about mechanical ventilation can be spelled out in the client's advance directive and POST form. Some clients choose to forgo mechanical ventilation, believing that it merely prolongs the dying process. Others choose to have mechanical ventilation when they can no longer breathe on their own. Depending on the physician, choosing mechanical ventilation may affect the physician's certification of the client as terminal and therefore eligible for hospice benefits.
Once mechanical ventilation 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.
A survey of hospice nurses in Oregon (Ganzini et al., 2003) indicated that many older clients choose to end their lives by refusing food and liquids. Forty-one percent of the nurses who returned the survey reported that at least one of their clients had voluntarily refused food and liquids to hasten their death, which in most cases, occurred within 15 days of refusing fluids. Of the 102 clients who chose voluntary dehydration and starvation, 94 experienced what nurses described as "good" deaths, involving little pain and suffering. Most of these clients were at least 80 years old and had expressed a readiness to die and a wish to die at home.
The physician and care providers need to help families understand that forgoing ANH is not "killing" or "starving" the client. Although ANH may extend the client's life a few days or weeks, inserting a feeding tube causes considerable physical and emotional trauma, plus increased risk of infection and increased diarrhea. In addition, application of restraints to keep the client from pulling out the tube can cause the client to struggle.
Research suggests that people who choose not to have ANH do not suffer from hunger or thirst. Furthermore, without ANH, clients are less likely 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 client 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.
Honest, compassionate communication with patients and families is fundamental to quality care in every setting and circumstance but absolutely essential in end-of-life care. Although the overarching goals of palliative care are universal, care providers refine those goals based on the individual patient's and family's needs, concerns, and expectations. Quill (2000) identified urgent and routine clinical indications for discussing end-of-life care:
URGENT INDICATIONS
ROUTINE INDICATIONS
Talking about illness and death is difficult for both health professionals and patients, but studies show that patients want to have this discussion. Sharing bad news while maintaining hope is a delicate balancing skill 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 there is always something that 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.
The question of advance directives can open the discussion of what the client wants, needs, expects, and fears during this final phase of life. The physician is most likely to initiate the conversation but nurses and other healthcare providers should be prepared to discuss these issues as needs and circumstances change. Pantilat (2001) suggests six guidelines in communicating about illness and death:
Active listening to the client is equally if not more important than talking to the client. One way to open the conversation is to say: "Many clients with this condition tell me they think about dying. They have questions about this. How about you?" (Pantilat, 2001). Making empathic statements gives the client an opportunity to express needs and concerns and shows the healthcare provider's concern for the client. Feeling that your doctor or nurse truly cares about you evokes the client's trust
Many patients need permission, or 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?" (Pantilat, 2001). Another might be "What makes life most worth living for you?" Or "Tell me what you hope for" (Roberts, 2007).
Both client and family need timely and clear information about prognosis. It is difficult, and often impossible, for clinicians to answer the question "How long do I have?", but it is possible to describe the probable course of a particular illness in understandable terms. This helps clients 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 result in delayed referral to hospice and unnecessary pain and suffering for the client and family.
Explicitly discussing death helps the client express fears and concerns about the dying process and allows the clinician to address them directly. For example, the client 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 by talking about hospice care.
Conversations about death and dying should always consider the client's cultural/ethnic background and spirituality. Whereas the U.S. model of end-of-life care values autonomy and "truth telling," healthcare models in countries outside the United States value beneficence—protecting the client from bad news about serious illness. In these cultures, disclosure of serious illness may be considered disrespectful, impolite, or even harmful to the client (Searight & Gafford, 2005).
Cultural factors also affect the decision-making process and attitudes toward advance directives and end-of-life care. Protecting the client from bad news means that decisions about care will be made by the family, by the physician, or by a family/physician collaboration.
Learning about the client'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 client the option to refuse or accept information about diagnosis or prognosis and to designate a family member to act as his or her surrogate.
In West Virginia about 95% of the population is white. The largest ethnic minority group is African American at about 3.1%. Hispanics represent about 0.6%, and Native Americans about 0.1% of the population. The West Virginia University Center on Aging has created a workbook with the following recommendations for healthcare professionals:
The gap between the degree of relief that is possible and the suffering that persists is astonishing. There is always something that can be done to help relieve all types of pain, no matter what the cause.
—WILLIAM LAMERS, 2002
Pain has been called 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. Between 70% and 90% of people with advanced cancer experience pain, particularly those dying in nursing homes. Clients with other chronic diseases such as AIDS, sickle cell disease, and arthritis also suffer extreme pain, which may be ineffectively managed by clinicians. Experts estimate that, when properly treated, more than 95% of these clients could gain relief from pain.
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 client then can focus on other important end-of-life issues, such as unfinished business with family and friends or spiritual or religious concerns.
The other is that America's war on drugs has created general mistrust about the use of narcotic analgesics. People worry about becoming addicted or overdosing on these medications. In West Virginia, as in other parts of the country, pain is undertreated, and physicians have indicated a reluctance to prescribe opiates to relieve a client's pain. To address these concerns, in 2002 the West Virginia Management of Intractable Pain Act was amended to:
Although addiction is not a concern when treating dying clients, 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, it means that the client should be taken off the drug gradually; otherwise, withdrawal symptoms may occur.
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; consult your agency protocol.
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. Older adults may have a higher pain threshold than younger people or children due to normal age-related changes in neurophysiology. Some cultures dictate stoicism when experiencing pain, which may cause people not to admit pain or request medication. Anxiety and depression can exacerbate the pain experience, as can fatigue and sleeplessness.
Untreated pain can cause sleeplessness which leads to fatigue, setting up a cycle of suffering. Knowing the source of pain can be a relief in itself, particularly if the client has imagined a worst-case scenario and the source of the pain turns out to be a minor correctible condition. The meaning of pain also affects the client's perception of it. For example, the client who considers pain as "God's punishment for past sins" may feel that the pain is just a necessary price to pay for bad behavior.
The client's preferences should define the goal of pain management. Some clients will choose to be completely pain-free, even if it means sedation. Others will choose only to control pain enough to allow them 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.
The World Health Organization (WHO, 1986) developed a three-step ladder approach to pain management. Using this guideline for managing pain does not mandate sequential use, particularly in terminally illness. Clients with severe pain may need to begin with step 3 opioids.
Figure 1. The WHO 3-step dosing model for the treatment of pain (BiomedCentral.com).
Step 1 analgesics include aspirin, acetaminophen, and nonsteroidal anti-inflammatories. All pain medications, even step 1 analgesics, have side effects. Nonsteroidal anti-inflammatory drugs (NSAIDs) can cause gastrointestinal bleeding. Acetaminophen can be toxic at doses exceeding 4 gm in 24 hours, particularly in clients 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. 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.
When a client is unable to swallow an oral medication, IV or subcutaneous doses should be chosen over intramuscular (IM) injections.
Skilled use of opioids affords effective pain relief to most clients. 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 alleviate after a few days and most can be prevented or treated successfully.
Not all pain relief comes from medications. Depending on the type of pain, other methods, some of them simple, may increase client 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. Physical therapy may also be beneficial.
Complementary therapies such as acupuncture, guided imagery, biofeedback, meditation, and music therapy can also be helpful, not only in relieving pain but also in relieving with emotional and psychological distress. Psychotherapy, particularly for clients suffering from depression, can have significant effects on client's perception of pain and response to pain medications.
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 client's and family's expectations from curing to healing. Even when cure is no longer possible, healing is.
The client who has confidence that pain and suffering can be controlled will have hope for future quality of life. Clients who believe they are loved and cared for will have hope in their relationships. Religion and spirituality also help many clients maintain hope through prayer, religious practices and rituals, or spiritual beliefs (NCI, 2005).
The person diagnosed with a terminal illness experiences a host of emotions, including fear, anxiety, depression, anger, and feelings of loss and grief. The most common fears are fear of death itself, fear of pain, fear of dying alone, and fear of being a burden.
People with strong spiritual beliefs may not fear death but do fear the possibility of pain and suffering at the end-of-life. Health professionals with expertise in palliative care can reassure clients that pain and suffering will be relieved and that clients will not die alone.
Even for clients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains clients at the end-of-life.
—RABOW ET AL., 2004
Family caregivers bear an enormous burden during end-of-life care of a loved one. They play a major role in actual client care and in decision-making about care provided by others. Rabow and colleagues (2004) identified five burdens of family caregiving that health professionals should be aware of when communicating and interacting with the family:
Learning that your child has a life-threatening illness is one of the most unnatural and unacceptable 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. Nearly 28,000 infants die before their first birthday, generally from conditions existing at birth.
In 2005 an estimated 1,600 children ranging in age from 1 to 14 years were predicted to die of cancer. Only accidents kill more children in this age group. Many of these children die without access to palliative care. These young clients and their families need care that is focused on "improving the quality of life, maintaining the dignity, and ameliorating the suffering of seriously ill or dying children in ways that are appropriate to their upbringing, culture and community" (Himelstein et al., 2004).
The remarkable resilience of children sometimes makes it difficult to predict whether treatment of life-threatening conditions will end in cure or death. Thus palliative care should be implemented 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.
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 as well as respiratory function, and skin care.
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. Families express the common concerns about addiction from narcotic pain medication and need to be reassured that there is no evidence to support the idea. Not all terminal illnesses cause pain, but many do, and that pain can almost always be reduced or even prevented. Care providers can use the Wong-Baker scale for assessment of children's pain. 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.
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 be 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.
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 trying to keep the diagnosis secret denies the child's right to air feelings, fears, and questions about what is happening. Children pick up cues from parental and/or sibling behavior that something bad is going to happen and they need to express their feelings.
Keeping the diagnosis secret also risks having someone else reveal the information, which could erode 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.
The child with a terminal illness shares the some of the same concerns as any hospitalized child: separation from parents, painful procedures, and isolation. Care providers should encourage the family to spend as much time as possible with the child. Physical contact—touching, hugging, holding hands—is comforting and helps the child feel more secure.
Communicating with children about death involves more than just words. Health professionals need to assess the child's body language and encourage such expressive outlets for feelings as drawings, play with dolls, puppets or stuffed animals, writing stories, or working with modeling clay.
The legal responsibility for decisions about a child's treatment rests with the parent. 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 making the client comfortable and allowing maximum enjoyment of the time they have left with their child.
Confronting the possibility of dying raises fears for both the child and the family. Both 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. When they need to leave, it helps to tell the child when they'll be back.
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 children under age 17 make up only 0.4% of hospice clients. 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 Aid to Families with Dependent Children.
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. The phone number for the state Medicaid office can be found in the blue pages of government listings in the phone book, under the state health department heading (NCI, 2004).
[Material in this section was adapted from the National Cancer Institute's End-of-Life Care: Questions and Answers (http://cis.nci.nih.gov/fact/8_15.htm).]
Certain signs and symptoms indicate when death is near (Table 1). Not every client experiences each of these signs and symptoms and the presence of one or more of these symptoms does not necessarily indicate that the client is close to death. This final stage of dying may take from 24 hours to as long as 10 to 14 days.
| Signs and Symptoms | Interventions |
|---|---|
| Source: NCI, 2002. | |
| Drowsiness, increased sleep or unresponsiveness | When speaking, remember that the client may be able to hear even if there is no response. Do not shake the client 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 client of the time, date, and people who are present. Be calm and reassuring. |
| Decreased socialization and withdrawal | Speak to the client directly and offer reassurance that he or she is not alone. The client may need permission from the family to "let go." |
| Decreased need for food and fluids | If the client can swallow, offer ice chips, water, or juice. Keep the client's mouth and lips moist with glycerin swabs and lip balm. |
| Loss of bladder or bowel control | Keep the client as clean, dry, and comfortable as possible. Use disposable pads on the client's bed and remove them when soiled. |
| Darkened urine or decreased amount of urine | 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 regular blankets to warm the client, 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 client's body to the side and placing pillows beneath the head and behind the back may ease breathing. Supplementary oxygen may benefit some clients. If client 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 physician 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 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 client's chart, including the observation that the client is dying. Signs that death has occurred include:
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."
No one has the right to mandate a formula for correct grieving. While many are able to complete (integrating their loss into the fabric of their life in a way that enriches it) their grief work, others cannot. And while some grieve longer than others, some must grieve forever.
—VIVIAN GREENBERG, 2006
A family's bereavement begins when their loved one is diagnosed with terminal illness, initiating a period of anticipatory grieving for both client and family. After the client dies, family members continue to grieve until they become resolved to life without the deceased. For some, the process may take weeks or months; for others, grieving may take a year or more. The Medicare hospice benefit includes bereavement care for the family for one year after the client's death. All healthcare providers may encounter bereaved persons, and they need to recognize the signs of grieving and bereavement and offer appropriate support as part of care.
The way in which a person will grieve depends on the personality of the grieving individual, his or her relationship with the person who died, the situation surrounding the loss, and the attachment to the person. 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 difficulties, 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, 2004).
DeSpelder and Strickland (1987) identified five characteristics of grief:
Lindemann (1944) described three tasks that he called "grief work." These include:
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 or the relationship. Death often awakens emotions of past losses or separations.
When a loved one has experienced a prolonged dying, 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.
Support options for grieving families include grief support groups and one-on-one counseling by a psychologist, psychiatrist, clinical social worker, or clergyperson. If depression occurs in the context of bereavement, medication may be appropriate. No consensus exists among professionals as to the most effective intervention.
Health professionals who work with dying clients and their families may also grieve when a client dies, even though the death was expected. Attending the funeral or memorial service may allow expression of the grief as well as show respect for the family and their loss. If that is not possible, "one of the most meaningful acts of kindness you can do for a mourner is to write a letter of condolence" (Menkin et al., 2000). A good condolence letter offers a tribute to the deceased and comfort to the survivors. Guidelines for writing a condolence letter are available from End-of-Life Physician Education Research Center at http://www.mywhatever.com/cifwriter/library/eperc/fastfact/133.htm.
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.
American Association of Retired Persons (AARP)
http://www.aarp.org/life/griefandloss/
Candlelighters
http://www.candlelighters.org
Support and information for parents who have a child with cancer
Compassionate Friends
http://www.compassionatefriends.org
Support and information for parents who have lost a child of any age
Graceful Passages
http://www.gracefulpassages.com
A CD package of music therapy
Griefnet.org
http://griefnet.org
Online support groups for persons dealing with grief, death and major loss.
Growth House
http://www.growthhouse.org
Hospice Foundation of America
http://www.hospicefoundation.org
A nonprofit organization that promotes hospice care and works to educate professionals and families in issues relating to caregiving, terminal illness, loss and bereavement
Hospice Clients Alliance
http://www.hospiceclients.org
Advocacy and information organization for hospice clients and their families
Last Acts Partnership for Caring
http://www.partnershipforcaring.org/Resources/prineng.html
National Family Caregivers Association
http://www.nfcacares.org
Advocacy and information for family caregivers
National Hospice and Palliative Care Organization
http://www.nhpco.org
An association of professionals and volunteer caregivers that provides educational programs, technical assistance, and public policy advocacy
Oncology Nursing Society
http://www.ons.org
http://www.cancersymptoms.org
Client and caregiver guides to manage physical and psychological symptoms in end-of-life care
West Virginia Center for End-of-Life Care
http://www.hsc.wvu.edu/chel/wvi/index.asp
Provides coordination, education, and resources so that West Virginians will have their pain controlled and their treatment choices respected
West Virginia Center on Aging University
http://www.hsc.wvu.edu/coa/
Works to improve the health, well-being and security of older people and those who care for them, in West Virginia and across the nation, through research, education, clinical service, technology and advocacy
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