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Also available: West Virginia: End of Life Transition
(meets West Virginia nursing CE requirements)
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.
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
Each year more than 2.4 million people die in the United States. 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. Nine out of 10 Americans would prefer to be cared for and die at home, but less than 3 out of 10 do. Half of all Americans die in hospitals and one-fourth die in nursing homes—and far too many die in pain. According to Lynn and colleagues (2000), "Most dying patients, in most settings, most of the time, are in pain or suffer other symptoms."
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 twentieth-century 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.
Death began to emerge from the closet in the late 1960s 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, through initial funding by the National Cancer Institute.
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 some content on care of the dying.
Two decades after the first U.S. hospice was founded, research by the Robert Wood Johnson Foundation (RWJF) showed that end-of-life care was still not taught effectively to most 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. A "report card" on end-of-life care (Last Acts, 2002) rated the American healthcare system as mediocre in caring for the dying.
Five years after release of the Last Acts report, there is evidence of change in end-of-life care in the United States. This includes:
These changes are encouraging; yet significant challenges remain. Hospice services are still not widely used, and the median length of stay in hospice is only 21 days, far less than the 60 days considered necessary for people to gain maximum benefit (HHCS, 2005). Most dying patients have hospice care for a week or less.
With the graying of the Baby Boom generation, the increasing burden of chronic illness among Americans of all ages and the continuing epidemic of HIV/AIDS, the demand for palliative care will increase exponentially over the next several decades. Experts are concerned that there will be too few physicians and nurses certified in palliative care to meet the need.
VA BENEFITS FOR HOSPICE CARE
Veterans account for more than one-fourth of all deaths in the United States. Many of them are World War II veterans now in their eighties. 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:
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. Further, military training may have developed an attitude of stoicism that could stand in the way of 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. Just asking "What branch of the service were you in?" is 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 (NHPCO, 2005). Not all veterans have served in combat; those who have may have witnessed horrific events.
Americans are reluctant to talk about death or to express their wishes about end-of-life care. According to the National Hospice Foundation, only one-fourth 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 and end-of-life care has allowed Americans to remain in woeful ignorance about end-of-life issues. This avoidance has resulted in less than optimum care and diminished quality of life for those who are dying and for their families. A survey conducted by the National Hospice Foundation showed that 75% of Americans do not know that hospice care can be provided in the home. 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 calling in hospice means "giving up," that it will shorten the patient's survival. However, a recent study of more than 4,000 patients suggests the opposite—the mean survival was 29 days longer for hospice patients than for nonhospice patients. For hospice patients with congestive heart failure, lung cancer, and pancreatic cancer, the survival was significantly longer than for nonhospice patients with the same conditions (Connor et al, 2007).
Services covered by Medicare are listed below. In addition, many private healthcare plans and Medicaid in 46 states and the District of Columbia cover hospice services. Medicare covers these hospice services and pays nearly all of their costs:
To access the hospice benefit, the patient's doctor must certify that the patient likely has six months or less of life remaining. If the patient lives more than six months, the benefit can be extended for an unlimited number of 60-day periods, based on the physician's recertification that the patient is likely to die within the next six months.
When the patient asks "How long do I have?" the physician often cannot answer with certainty. One study showed that only 20 percent of physicians' prognoses re time of death were even approximately accurate (Christakis, 2000); more than half were overly optimistic. Estimates are that more than 1 in 10 patients who enter hospice care are discharged alive by their own choice. Columnist Art Buchwald entered hospice after refusing dialysis for kidney failure—and left five months later to go home and write another book. He died nearly a year later.
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:
- Provides relief from pain and other distressing symptoms
- Affirms life and regards dying as a normal process
- Intends neither to hasten nor postpone death
- Integrates the psychosocial and spiritual aspects of patient care
- Offers a support system to help patients live as actively as possible until death
- Offers a support system to help the family cope during the patient’s illness and in their own bereavement
- Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated
- Will enhance quality of life, and may also positively influence the course of illness
- Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications (WHO, 1996).
Effective end-of-life care is comprehensive, compassionate, and patient/family-centered. In today's world, the word family can have more than one definition. In the context of palliative care, the National Consensus Project (2004) 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.
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 patients and their families. 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.
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 thirty 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. The illness may be related to heart disease, kidney disease, emphysema, Alzheimer's or other dementia, HIV/AIDS, or any other disease or disorder. 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 special 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. The hospice team includes:
Hospice care is far less expensive than other types of end-of-life care (eg, aggressive chemotherapy). Hospice patients are more 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.
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 if it 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 patients. Hospice care may be perceived as a luxury in some communities, even though Medicare and Medicaid benefits require little out-of-pocket expenditure.
Some of these disparities may be related to ethnic, cultural, and spiritual preferences, discussed later in the section on Cultural Sensitivity.
It's simply not true that we can know in advance how we ourselves will feel about many of these things once we find ourselves not 45 and fit, but 75 and viewing life with a different lens.
—LEON KASS, MD, Chair, President's Council on Bioethics
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.
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, effective July 1, 2000, combines the power of attorney and the declaration of a healthcare agent in a single document called the Advance Healthcare Directive.
For those healthcare providers uncertain how to ask a patient about advance directives, the following questions may be helpful:
Laws concerning advance directives vary from state to state. For example, under a 2007 Pennsylvania law (Associated Press, 2007), 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.
Several states have adopted an advance directive form, developed in Oregon and known as POLST, which stands for Physician Orders for Life-Sustaining Treatment (2005). 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 bright 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.
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."
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 patient is at home, on the refrigerator, and specifics of the order should also be included in the patient'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 patient's wishes will be honored. Some patients prefer the additional safeguard of wearing a bracelet or necklace to alert care providers that a DNAR order is in force.
Decisions about mechanical ventilation can be spelled out in the patient's advance directive. Some patients 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 patient as terminal and therefore eligible for hospice benefits. Use of mechanical ventilation requires that the patient lie in bed or sit in a chair with restricted movement.
If an endotracheal tube is used, the patient cannot 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 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 patients 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 patients had voluntarily refused food and liquids to hasten their death, which in most cases, occurred within 15 days of refusing fluids. Of the102 patients who chose voluntary dehydration and starvation, 94 experienced what nurses described as "good" deaths, involving little pain and suffering. Most of these patients were at least 80 years old and had expressed a readiness to die and a wish to die at home.
Deciding whether to have ANH means weighing the potential benefit and the burden to the patient. The physician and care providers need to help families understand that forgoing ANH is not "killing" or "starving" the patient. 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 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.
Research suggests that people who choose not to have ANH do not suffer from 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.
…A patient's question of "How long?" often is code for the more existential question: "What is going to happen to me?" We may be unable to predict "how long" with precision, but we can often describe "how."—JOANNE ROBERTS, Describing the Road to Death, 2007
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
Communicating with Families of 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.
Researchers studying 22 ICUs in France found that the benefits of longer conferences (30 minutes vs. 20 minutes in the control group) plus providing written information may also help reduce the symptoms of posttraumatic stress disorder (PTSD) in family members during bereavement.
Ideally, these conferences are held in a quiet room and allow for discussion of the patient's situation as well as an opportunity for the family to "ask questions, express concerns, and confront painful emotions with the help of caring, compassionate professionals" (Lautrette et al., 2007).
Guidelines for these conferences are based on the VALUE mnemonic developed by one of the collaborating authors, Dr. J. Randall Curtis, University of Washington:
Where we cannot alter the course of events we must at least (when the patient so wishes) predict sensitively and together plan care, for better or for worse.
—MURRAY ET AL., 2005
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 patient 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 patient is equally if not more important than talking to the patient. Questions that will elicit key information about the patient's perspective include:
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?" (Pantilat, 2001). Making empathic statements gives the patient an opportunity to express needs and concerns and shows the healthcare provider's concern for the patient. Feeling that your doctor or nurse truly cares about you evokes trust, confidence, and hope.
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 patient 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 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 result in delayed referral to hospice and unnecessary pain and suffering for the patient and family.
Murray and colleagues (2005) describe three typical illness trajectories for progressive chronic illness: cancer, organ failure, and the frail elderly or dementia trajectory. Needs of the patient and the caregivers vary according to the trajectory they are following, but also according to their individual circumstances, cultural and spiritual beliefs, and coping patterns. The cancer trajectory includes a short period of evident decline in physical health over a period of weeks, months, or, in some cases, years. This period is characterized by weight loss and impaired ability for self care.
Figure 1. Typical illness trajectories for people with progressive chronic illness.
Adapted from Lynn and Adamson, 2003. With permission from RAND Corporation, Santa Monica, California.
The organ failure trajectory, typical of heart failure and chronic obstructive pulmonary disease, is a more gradual deterioration in health and functional status over many months or years. This decline is punctuated by periodic acute, often severe, exacerbations that may require hospitalization. Any one of the exacerbations may prove fatal.
The frail elderly or dementia trajectory is one of "progressive disability from an already low baseline of cognitive or physical functioning." Patients on this trajectory may succumb to minor physical events that overwhelm their meager physical and emotional reserves, or to an acute event such as hip fracture or pneumonia.
Although the physical trajectories are useful in planning care, ongoing assessment of individual patients and their caregivers is essential. Other conditions such as stroke or renal failure might not follow any of the three trajectories discussed above. In addition, psychological, spiritual, and social needs may change over time (Murray et al., 2005).
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 by talking about hospice care.
Conversations about death and dying should always consider the patient's cultural/ethnic background and spirituality. Approximately one-third of America's increasingly diverse population is composed of ethnic minorities whose values and beliefs differ sharply from those of white Americans of European ancestry. 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 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 (Searight & Gafford, 2005).
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
Cultural factors also affect the decision-making process and attitudes toward advance directives and end-of-life care. Protecting the patient from bad news means that decisions about care will be made by the family, by the physician, or by family/physician collaboration. Completing advance directives is less common among Asian Americans, Hispanic Americans, and African Americans. For example, one study showed that about 40% of older white patients had completed advance directives, compared with only 16% of older blacks (Hopp & Duffy, 2000). This disparity may arise from longstanding distrust of the healthcare system, based on a history of segregation and discrimination among minority populations.
Preferences about end-of-life care are as diverse as America's population. This diversity was highlighted in a survey of Arab Americans, Hispanics, blacks, and whites, all of whom were 50 years or older. For example, a majority of Arab Americans would prefer to be cared for by family rather than go into a nursing home, and they wanted to avoid heroic measures. In contrast, African Americans expressed a preference for care in nursing homes and hospitals.
Hispanics in the survey were very concerned about dying with dignity, and receptive to hospice care and hospitals, but they wanted to avoid nursing homes. Whites in the survey did not believe that end-of-life care was the family's responsibility. They were open to the idea of hospice care, hospitals, and nursing homes, but preferred to die at home. They were also more concerned about having an advance directive, knowing what to expect about pain and other effects of their condition, and not having heroic measures to extend life. Most of the participants in the survey were not aware of hospice care until they entered this study (Duffy, 2006).
The Duffy study also showed gender differences in end-of-life preferences. Both Hispanic and African men wanted minimal medical intervention at the end of life, while women in both groups favored more extensive intervention. Hispanic men were more likely to prefer assisted suicide in some cases. African American men expressed distrust of doctors even before they were asked about this issue, probably based on documented history of medical injustice such as the Tuskegee syphilis study (Bayer, 2006).
Racial, ethnic and cultural differences are not the only factors to consider in discussing end-of-life issues. The patient's religion, country of origin, and age also play a role. In other words, these are very personal, individual issues. One study showed that belief in divine intervention, relying on a higher power for strength, support, and guidance, and using spirituality to cope with cancer were associated with a preference for life-sustaining measures such as CPR, mechanical ventilation, and hospitalization.
Individuals who relied most heavily on spiritual/religious coping were less likely to have a living will (True et al., 2005). In another study of people with advanced cancer, Harvard researchers found a similar association between religious coping and preference for aggressive life-extending measures (Balboni et al., 2007). In addition, nearly half of those studied reported that their spiritual needs were not supported by religious communities or the medical system.
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. Patients 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, almost all of these patients 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 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 on Accreditation of Healthcare Organizations (JCAHO) requires that hospitals and other healthcare facilities regularly assess, monitor, and manage pain in all patients. Those facilities who fail to do so risk losing accreditation. Until all health professionals learn the principles of pain management explicit in 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 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. They also may consider requests for pain medication as "giving up" or "giving in" to their disease. Knowledgeable health professionals can help 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, it means that the patient 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 patient 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 patient's perception of it. For example, the patient who considers pain as "God's punishment for past sins" may feel that the pain is simply a necessary price to pay for bad behavior.
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 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 (Figure 2). Using this guideline for managing pain does not mandate sequential use, particularly in terminally illness. Patients with severe pain (7–10 on a numerical scale such as Figure 1) may need to begin with step 3 opioids.
Figure 2. The WHO three-step dosing model for the treatment of pain. Courtesy 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 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. 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 patient 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 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 alleviate 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.
The symptoms of 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, lorazepam, and diazepam) 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 (eg, 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 in coping with this distressing symptom. 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 (eg, 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.
Adjuvant therapies for intractable pain include radiation therapy (to shrink tumors or relieve bone pain), nerve blocks, or intrathecal pumps to deliver large doses of opioids without systemic sedative effects.
Not all pain relief comes from medications. Depending on the type of pain, 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. 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 emotional and psychological distress. Psychotherapy, particularly for patients suffering from depression, can have a positive effect on patient's perception of pain and response to pain medications.
During most of our lives, we deny, defy, or attempt to ignore the fact of death. We worship at the fountain of youth. We fool ourselves by creating the illusion that life is a permanent condition. And when we walk through a hospital's doors, almost all of us are ill-equipped to handle what lies ahead. It's the doctors, and especially the nurses, who must help us face the fact that none of us is immortal.
—ROSE BIRD, A Daughter's Story, 1992
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.
Michael Lerner (1998) 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. Religion and spirituality also help many patients maintain hope through prayer, religious practices and rituals, or spiritual beliefs (NCI, 2007).
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 the life remaining and help the patient resolve important issues with family and friends.
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 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 loss of control. Caregivers can provide comfort by allowing the person to express any fears and concerns about dying and by reassuring the person that you will honor advance directives. Include patients in discussions about issues that concern them. Listening to patients reminisce about their lives may also be helpful. Just keeping the person company—talking, watching movies, reading, or just being there also can be comforting (NCI, 2002).
It is now clear that depression at the end of life is common,
underdiagnosed, and undertreated.
—JAMES HALLENBECK
Sadness and grief are normal reactions to learning that you have a terminal illness, but not all patients experience true clinical depression. For example, research suggests that at least half of all cancer patients successfully adapt to their situation. Health professionals need to distinguish between normal sadness and the level of depression in each patient. Depression is also commonly underdiagnosed in the general population; consequently, depression in dying patients may be a pre-existing condition. The following factors may suggest the need for early intervention to treat depression as part of end-of-life care:
The patient who appears depressed should first be assessed for pain. Untreated or under-treated pain can cause depression and other symptoms.
Symptoms of depression include:
Depression is treatable, both with antidepressant medications and psychotherapy. According to the Oncology Nursing Society (2002), "Depression is a highly treatable condition that greater than 70% of the time responds to medication and nonmedication treatment regimens." Recognizing the symptoms in people with terminal illness and referring them for appropriate treatment can greatly improve their quality of life.
Although depression in dying patients is not markedly different from depression in other medical conditions, 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.
Anger is common when terminal illness is diagnosed: 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 move on to how to make the most of the time remaining.
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:
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 psychological stresses.
Grief is the normal human response to loss and it is universal, individual, and unpredictable. Although Elizabeth Kübler-Ross and others have described various stages of grief, people do not move through these stages in a straight line or at a predictable speed. Instead, each person progresses at his or her own pace, and may recycle through one or more of the stages, which include:
The time it takes to move among these stages is determined by the individual, his or her values and 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.
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 and to communities and the nation. The September 11 attacks on the World Trade Center left many bereaved families but also a bereaved city and nation. The term bereavement does not define the types of emotions, attitudes, or behaviors that occur.
The dying patient and the family experience anticipatory grief, a process of working through their intellectual, behavioral, emotional responses to what the expected death will mean when it happens. During this process, families 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.
[This section is taken from NCI, Cognitive Disorders and Delirium (PDQ), 2006.]
Delirium is the most common neuropsychiatric disorder at the end of life (Ganzini, 2007). 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 but hypoactive delirium may be overlooked or misdiagnosed as depression. Hypoactive delirium is the most common type among older adults in all care settings (Peterson et al., 2006).
Disturbances in sleep-wake cycles and psychomotor activity, and delusions or hallucinations may occur, as well as emotional lability. 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. Research suggests that early identification and interventions to address these risk factors can significantly reduce the number and duration of episodes of delirium in older patients (Inouye et al., 1999). For example, the patient who normally wears glasses and/or a hearing aid may become confused without these appliances.
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, these drugs may cause drug-induced Parkinsonism and motor restlessness. Use of benzodiazepines may help calm the dying person with hyperactive delirium but tends to intensify confusion (Ganzini, 2007).
The Dying Person's Bill of Rights was created in 1975 at a workshop on "The Terminally Ill Patient and the Helping Person" conducted in Lansing, Michigan, by Amelia J. Barbus, Associate Professor of Nursing at Wayne State University.
THE DYING PERSON'S BILL OF RIGHTS
I have the right to be treated as a living human being until I die.
I have the right to maintain a sense of hopefulness however changing its focus may be.
I have the right to be cared for by those who can maintain a sense of hopefulness, however challenging this might be.
I have the right to express my feelings and emotions about my approaching death in my own way.
I have the right to participate in decisions concerning my care.
I have the right to expect continuing medical and nursing attention even though "cure" goals must be changed to "comfort" goals.
I have the right not to die alone.
I have the right to be free from pain.
I have the right to have my questions answered honestly.
I have the right not to be deceived.
I have the right to have help from and for my family in accepting my death.
I have the right to die in peace and dignity.
I have the right to retain my individuality and not be judged for my decisions which may be contrary to beliefs of others.
I have the right to discuss and enlarge my religious and/or spiritual experiences, whatever these may mean to others.
I have the right to expect that the sanctity of the human body will be respected after death.
I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.
Source: American Journal of Nursing, 1975
Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients 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 patient 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:
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, this puts them at serious risk of 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.
The caregiver experience holds a host of 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 endless responsibility can lead to mental health problems such as anxiety and depression. Research shows that at least half of all caregivers experience clinical depression (Haley et al., 2001). Nurses and other healthcare providers need to be aware of signs of depression or other mental health problems in caregivers and recommend that they take time to seek treatment.
Care of a seriously ill loved one too often takes priority over the caregiver's own healthcare needs. Inadequate or interrupted sleep is 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 (Cameron et al., 2002; Christakis & Allison, 2006). Referring the patient for respite care can offer caregivers much needed relief and time to take care of themselves.
The negative health effects of caregiving can be at least partially alleviated by thorough assessment of caregiver needs that leads to a care plan with support services. For example, caregivers who suffer from depression may be helped by medications and counseling. 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 even beyond coping with their loved one's illness to reducing the incidence of complicated grief after the loved one's death (Schulz, et al, 2006).
In this high-tech biomedical era, when the tantalizing possibility of miraculous new cures is daily dangled before our eyes, the temptation to see therapeutic hope is great, even in those situations when common sense would demand otherwise. To hold out this kind of hope is too frequently a deception, which in the long run proves far more often to be a disservice than the promised victory it seems at first.
—SHERWIN P. NULAND, How We Die, 1993
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 five-year survival rates for many types of cancer, 1 in 4 Americans will die of cancer.
Rather than admit when cure is no longer possible, many people with advanced cancer and their healthcare providers continue chemotherapy and radiation treatments into the last month of life. A large study of Medicare patient records showed that treatment of cancer patients near death is becoming increasingly aggressive, leading to more emergency department and intensive-care-unit admissions during the last few weeks of life. Patients are being admitted to hospice care within days of death, indicating that hospice is being used "to manage the death itself rather than palliating the disease" (Earle et al., 2004).
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. Although not every person with terminal cancer experiences excruciating pain, it is not uncommon. Other physical needs arise as the disease progresses, affecting all major body systems, and need to be managed based on the goal of patient comfort and quality of life. The person with advanced cancer may also be suffering the effects of chemotherapy and radiation therapy. Special problems for the person with advanced cancer include disruption of organ function, hematologic issues, anorexia-cachexia, hypercalcemia, and pleural effusion.
Disruption of function (obstruction or pressure). 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.
Hematologic issues. Most people with cancer are at least mildly anemic, but chemotherapy and radiation therapy can exacerbate the problem. At one time, erythropoietin (Epogen) was used to correct the problem. However, in March 2007 the Food and Drug Administration (FDA) issued a public health advisory indicating that the use of Epogen and other erythropoiesis-stimulating agents (ESAs) increased the risk of death and tumor growth, and failed to reduce the need for blood transfusions. ESAs do not have FDA approval for treatment of fatigue in people with cancer or HIV/AIDS, or in surgical patients.
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-cachexia. 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, 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. Hypercalcemia is an elevated level of serum calcium, and the most common life-threatening metabolic disorder associated with cancer. 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 (NCI, 2005).
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 widespread misconception that hospice care is only for cancer patients has proved a barrier to seeking hospice care for people with other terminal conditions. People with AD or other dementias account for less than 9 percent of the annual hospice census (National Hospice and Palliative Care Organization, 2007).
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 (AD) 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. Getting legal affairs in order—drawing up advance directives, powers of attorney, wills or trusts—allows the patient and the family to focus on maximizing the quality of life remaining.
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.
Pain management is just as important for people with dementia as it is for those who are cognitively intact. Clinicians can assess the presence of pain from the patient's facial expressions even though the patient is unable to indicate the intensity of the pain. In one study, more than 60% of family caregivers reported that the person had been in pain "often" or "all of the time" during end-of-life care (Schulz et al., 2003).
In the late stages of AD, patients may become unable to consume sufficient oral feedings to prevent weight loss. Eventually, the patient will lose the ability to swallow, at which time he or she is considered terminal. This is a normal occurrence in the final stages of AD. If the patient's advance directive indicates that he or she does not want artificial nutrition and hydration (ANH), caregivers must respect that decision. However, if the decision was not made earlier, this is the time when the patient's surrogate (also called a proxy) decision maker, together with the physician and other members of the health team, must decide together whether to initiate tube feedings.
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. Most patients with advanced dementia are not starving; they simply 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 (Hoffer, 2006).
Only 1 in 10 people with severe cognitive impairment have orders in place to forgo ANH. More than 18% of people with severe cognitive impairment are subjected to the use of feeding tubes (Brown University, 2000). According to the American Hospice Foundation (2007), 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." Nevertheless, families may find that nursing homes promote the idea of artificial nutrition not to benefit the patient but for fiscal reasons. As one physician wrote:
It is unfortunate that fiscal considerations promote the use of tube feeding, for which nursing homes receive special reimbursement, whereas hand feeding, which requires more manpower and highly trained staff, is not rewarded. (Volicer, 2001)
New drugs, particularly highly active anti-retroviral therapies (HAART), have helped people with HIV/AIDS live longer. Nevertheless, HIV/AIDS remains an incurable disease, killing 15,000 people each year.
Nearly 400,000 people in the United States are living with advanced AIDS. What began as a disease of gay white men in the early 1980s now affects a mosaic of people of both sexes, all races, in every stage of life. Men still account for three-fourths of AIDS cases, but women constitute the fastest growing HIV/AIDS population. The HIV/AIDS epidemic includes children and adolescents infected perinatally as well as older adults who may be unaware of their infection.
People living with AIDS experience multiple barriers to appropriate care throughout the course of their disease because of poverty, lack of health insurance, living in an underserved area, and co-existing health problems such as substance abuse or mental illness. These barriers persist at the end of life. Even though the Ryan White CARE Act provides for care of the indigent and those with inadequate insurance in the United States, some patients do not have access to a full continuum of coordinated care.
In the early years of the epidemic, palliative care was all the healthcare system had to offer people with HIV/AIDS. The trajectory toward death was steep and swift. For the past decade, however, more effective treatments for HIV/AIDS and for opportunistic infections have made the disease trajectory far less predictable.
As one clinician said, "The only predictable thing about HIV/AIDS is its unpredictability. This has increased the difficulty of making decisions about advance care and end-of-life issues. Mallinson (2003) suggests a model that "can start at the moment of patient apprehension" and focuses on aggressive symptom management, comfort issues, and supportive treatment, with a goal of improving the patient's quality of life.
Less than half of all people with HIV/AIDS have talked with their physician about advance care directives. Physicians were least likely to discuss end of life issues with "blacks and Latinos" (Wenger et al., 2001). Those who expressed their wishes wanted aggressive treatment for reversible conditions, including CPR, ventilation, tube feeding, and antibiotics. For irreversible conditions, only half the patients wanted antibiotics, only 17% wanted CPR and only 9% wanted to be intubated. "Whites were twice as likely as blacks" to focus on relieving pain rather than extending life (Sellers, 2003).
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 round-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:
Many lack the traditional support systems of friends and families. Friends may be HIV-infected themselves. Others may be afraid of contagion, arising from ignorance about HIV transmission or unresolved homophobia. Families may live far away. Many people with AIDS have migrated to large urban areas that are more tolerant of nontraditional lifestyles, and they have not established a support system by the time their disease is advanced.
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 who are concurrently coping with HIV. These various losses can occur very 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.
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: extreme prematurity, severe birth defects and congenital anomalies, cancer, HIV/AIDS, progressive metabolic disorders, and other diseases and disorders. Nearly 28,000 infants die before their first birthday, generally from conditions existing at birth.
In 2004 more than 1400 children ranging in age from 1 to 15 years died of cancer (CDC, 2007). Only accidents kill more children in this age group. Many of these children die without access to palliative care. These young patients 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. 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, which 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.
Health care reform legislation in Massachusetts now includes an innovative free Pediatric Palliative Care Program. This program is designed to improve the quality of life for all children (up to 18 years old) and families facing serious illness, not just those who have a six-month prognosis. It offers a total approach to care—physical, psychological, social, and spiritual—and the option to continue treatments aimed at cure. Services not only include pain and symptom management for the ill child but counseling and spiritual care for parents and siblings, as well as volunteer assistance with errands (Cooney, 2007).
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.
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. 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.
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.
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 express 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.
As authors Lynn and Harrold (1999) wrote: "Talking about death does not make it happen, though many people are afraid it may. Talking about death allows the child to complete important emotional tasks…. Children as young as 3 years old are often aware that they are dying without having been told."
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.
| Age | Concept of Death | Interventions |
|---|---|---|
| 0–3 years | None | Provide physical comfort, familiar people, favorite toys, and consistent care. Use simple language to communicate. |
| 3–5 years | Believes death not final but a kind of sleep, which can be caused by "bad" thoughts. Does not see death as personal. | Minimize separation from parents. Explain that illness is not punishment. Assess for guilty feelings and reassure if needed. Use realistic language (dead; dying) |
| 5–7 years | Begins to understand death as final but do not see it as natural. Believes death 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. |
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 patient 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 patients. 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. 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. 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 patient may be able to hear even if there is no response. 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. |
| 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 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 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 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 patient's chart, including the observation that the patient 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."
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. Unless the death occurred under unusual circumstances, an autopsy (postmortem surgical examination) is not required.
Care of the body after death is often the responsibility of nurses. If the family was not present at the time of death, the nurse or other responsible provider should try to 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 need to be removed from the bedside and any soiled linen removed from the room. Agency policy may differ on how to deal with tubes that were in place at the time of death.
How the body is cared for after death is also influenced by religion or culture, so health professionals should be aware of any preferences or limitations and comply with them. 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 preferred and chairs are 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 goodbyes. Only when the family leaves the room should final preparations for removal of the body be initiated.
After the family has viewed the body, the care provider attaches additional identification tags, one to the ankle and another to the wrist (if the deceased person's wristband has been removed). The entire body is then wrapped in a shroud, either plastic or cotton, and another identification tag affixed to the outside of the shroud. 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 service elevators 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.
According to the U.S. government's official website on organ donation (http://www.organdonor.gov), more than 95,000 people are waiting to receive an organ transplant. Each day, 16 people die while waiting. The public has a generally favorable attitude about organ donation for transplants; however, not every clinician broaches the subject with patients. To do so would create an ethical dilemma—a real or perceived conflict of allegiances. Clinicians who are caring for the patient but discussing organ donation may be perceived as being more the advocate for the organ recipient than of the potential donor.
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 organ procurement organization (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.
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 patient and family. After the patient 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 longer. The Medicare hospice benefit includes bereavement care for the family for one year after the patient'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 of grief work, which he called "grief work." These include:
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 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, 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 (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).
Health professionals who work with dying patients and their families may also grieve when a patient 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.eperc.mcw.edu/fastFact/ff_022.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
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
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
Patient and caregiver guides to manage physical and psychological symptoms
in end-of-life care
How I Coped When Mommy Died by Brett Hardy Blake.
A 30-minute documentary film available from Fanlight Productions, Boston.
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