Wild Iris Medical Education
COURSE PRICE: $35.00
CONTACT HOURS: 5
This course will expire or be updated on or before December 2, 2013.
ABOUT THIS COURSE
You must score 70% or better on the test and complete the course evaluation to earn a certificate of completion for this CE activity.
ACCREDITATION / APPROVAL
This program has been pre-approved by The Commission for Case Manager Certification to provide continuing education credit to CCM® board certified case managers.
Wild Iris Medical Education, Inc. provides educational activities that are free from bias. The information provided in this course is to be used for educational purposes only. It is not intended as a substitute for professional health care. See our disclosures for more information.
Copyright © 2011 Wild Iris Medical Education, Inc. All Rights Reserved.
COURSE OBJECTIVE: The purpose of this course is to provide healthcare professionals an overview of palliative and hospice care.
Upon completion of this course, you will be able to:
According to the Agency for Healthcare Research and Quality (2008), three quarters of Americans over age 65 have two or more chronic illnesses. The graying of the Baby Boom generation threatens to intensify this burden of chronic illness. A study of 20,000 Americans over age 50 found that Boomers born between 1949 and 1954 reported having more pain, chronic health conditions, and alcohol and psychiatric problems than people who were the same age twelve years earlier (University of Michigan, 2007). One major reason for this declining health is obesity, which increases the risk of diabetes, heart disease, and arthritis.
The burden of chronic illness and the ongoing epidemics of cancer and HIV/AIDS point to an exponential escalation in the demand for palliative care over the next several decades. By 2030, 1 in 5 Americans will be over age 65 (U.S. Census Bureau, 2010). Experts are concerned that there will be too few physicians and nurses certified in palliative care to meet the needs of this aging cohort. Boomers make up a significant part of the healthcare workforce as well: nearly 40% of doctors are age 55 or older, and one third of the nursing workforce is past 50. When these health professionals retire, the shortage will worsen.
Each year more than 2.4 million people die in the United States, and by 2040, the annual number of deaths will reach 4 million (U.S. Census Bureau, 2008). Ten percent die suddenly in an accident or from a fatal heart attack or stroke. However, most people require care over weeks or months as their health diminishes. On average, Americans with chronic illness will need help with routine activities of daily living for two or more of their final years of life.
Nine out of 10 Americans would prefer to be cared for and die at home, but only 4 out of 10 do. One third of Americans die in hospitals and one fourth die in nursing homes—and far too many die in pain. According to Lynn and colleagues (2007), “Most dying patients, in most settings, most of the time, are in pain or suffer other symptoms.”
Dying in hospitals not only increases the cost of care but often subjects patients to uncomfortable and unnecessary procedures. For example, nearly 40% of hospitalized patients spend ten days or more on a ventilator.
The French think death is inevitable.
The English think it’s imminent.
The Americans think it’s optional.
—JANE WALMSEY (Brit-think, Ameri-think, 2003)
Americans are reluctant to talk about death or to express their wishes about end-of-life care. According to the National Hospice and Palliative Care Organization (NHPCO, 2010), fewer than one third of Americans express in writing their wishes about how they want to be cared for at the end of life. Fewer still have not thought about end-of-life care at all, while some have thought about it but not told anyone what they want.
Avoiding the subject of death has created woeful ignorance about end-of-life issues, resulting in less than optimum care and diminished quality of life for the dying and for their families. Research by NHPCO showed that 75% of Americans do not know that hospice care can be provided in the home (2010). Ninety percent do not realize that the Medicare hospice benefit, instituted in 1983, guarantees comprehensive high-quality care at little or no cost to terminally ill Medicare beneficiaries and their families.
Many people think hospice care means “giving up,” that it will shorten survival. However, a study of more than 4,000 patients suggests the opposite—the mean survival was 29 days longer for hospice patients than for non-hospice patients. For hospice patients with congestive heart failure, lung cancer, and pancreatic cancer, the survival was significantly longer than for non-hospice patients with the same conditions (Connor et al., 2007).
To educate the public about the need to plan for end-of-life care, in 2009 healthcare reform advocates drafted a provision for Medicare reimbursement for physician-patient discussions of advance directives. Opponents of healthcare reform and sympathetic media labeled this badly needed patient education as “death panels,” effectively killing the measure. As Dr. Kettl (2010) wrote, “[T]he concept of physicians being paid for time to talk with patients and their families about advance directives somehow generated into the fear of decisions about life and death being controlled by the government.”
According to Dartmouth Atlas researchers (2010), more than 80% of patients say they wish to avoid hospitalization and intensive care during the terminal phase of illness. However, those wishes are too often overridden by reimbursement system incentives for overtreatment in which “Medicare rewards doctors far better for doing procedures than for assessing whether they should be done at all” (Butler, 2010).
2010 INTERNATIONAL SURVEY ON END-OF-LIFE CARE
Americans are not the only people who find it difficult to talk about death. A forty-country survey found that “death, although inevitable, is distressing to contemplate and in many cultures is taboo.” Reluctance or refusal to discuss death and the realities surrounding life’s final transition denies the vast majority of people the benefit of palliative care. Key findings of this international report highlight issues affecting Americans and other countries around the globe.
Source: Economist Intelligence Unit, 2010.
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.
In more recent years, death began to emerge from the closet when the first modern hospice opened in England in 1967. Dame Cicely Saunders, educated first as a nurse and then as a physician, is considered the founder of the modern hospice movement. The first hospice in the United States, the Connecticut Hospice, Inc., initiated in-home services in 1974.
Elizabeth Kübler-Ross pioneered multidisciplinary seminars on death and dying. Her now-classic book On Death and Dying found a ready audience among professionals as well as the public. Healthcare curricula slowly began to change, first in nursing and later in medicine, to include content on care of the dying.
Evidence that end-of-life care is changing in the United States includes:
Despite encouraging changes, significant challenges remain. Hospice services are still not widely used. Fewer than half of patients eligible for hospice choose that option, and the median length of stay in hospice is only 21 days, far less than the 60 days considered necessary for people to gain maximum benefit (NHPCO, 2009). One third of dying patients have hospice care for a week or less.
Palliative care…recognizes that serious illness and the suffering that accompanies it is a universal human condition, affecting every one of us. It strives to redress the fragmentation and discontinuities of the healthcare system, recognizing that the patient and the family still need care when they leave the hospital or the doctor’s office.
—DIANE E. MEIER, M.D. (2010)
Both palliative care and hospice in the United States originally focused on the care of cancer patients, but now both encompass care of patients with other severe illness such as kidney disease or heart disease. Palliative care is a recognized subspeciality by the American Board of Medical Specialties (ABMS). Between 2000 and 2008, the number of palliative care programs increased more than 125% in hospitals with fifty or more beds, and now total nearly 1,500. These programs are more commonly found in large hospitals and not-for-profit hospitals (CAPC, 2010).
The National Quality Forum (2009) defines palliative care as follows:
Palliative care refers to patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.
In today’s world, the word family can have more than one definition. In the context of palliative care, the National Consensus Project (2009) 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 and hospice care are not the same, however. A recent statement from the Center to Advance Palliative Care (2009) clarifies that
[Palliative care] is not limited to end-of-life care, and it is not synonymous with hospice care. The goal of palliative care is to relieve the pain, symptoms, and stress of serious illness—whatever the prognosis. Palliative care is available to those undergoing curative treatments even at the early stages of a serious and complex illness.
Palliative care’s focus on communication in addition to pain and symptom management occurs long before the end of life. These are quality of life conversations that allow physicians to explore their patients’ values and goals. Patients facing serious illness may live for years. This is why palliative care is necessary for patients with chronic illnesses who want to remain in control of their lives and destiny.
Unfortunately, referrals to palliative care tend to occur late in the trajectory of illness. This may be related to the misperception of palliative care as synonymous with hospice or end-of-life care. A recent survey of medical oncologists and midlevel providers found that the term palliative care acted as a deterrent to early referral by medical oncologists. Both professionals and patients found it less distressing to use the term supportive care rather than palliative care. Researchers attributed these findings to “clinicians’ own discomfort with end-of-life discussions and possibly concerns of taking away hope from patients and families” (Fadul et al., 2009). This finding was similar to that of Morstad and colleagues (2006), who found that the term palliative care evoked more negative emotions in both staff and parents of children with cancer.
The National Cancer Institute (NCI) defines supportive care as care given to improve the quality of life of patients with a serious or life-threatening disease. The goal of supportive care is to prevent or treat as early as possible the symptoms of the disease; treatment side effects; and psychological, social, and spiritual problems related to the disease or its treatment (NCI, 2010a).
Palliative care for those with life-limiting illness ideally begins at the time of diagnosis. Many people who do not fear death do fear the process of dying, the prospect of pain and suffering, and being a burden to their families. Research by the National Hospice and Palliative Care Organization (2010) shows that the top priorities for a loved one with terminal illness are:
All the abovementioned priorities are available in hospice care, which is a delivery system for palliative care services. Hospice is considered the gold standard for end-of-life care. The central belief of hospice is that each person is entitled to a pain-free death with dignity and that families are entitled to the support necessary to allow that to happen.
Hospice care is based on an interdisciplinary team approach that includes physicians, nurses, spiritual counselors, social workers, home health aides, therapists, and bereavement counselors. The team develops an individualized care plan to meet each patient’s needs for pain management and symptom control. When the patient is cared for at home, hospice staff is on-call 24 hours a day, 7 days a week.
Many people mistakenly think that hospice refers to a place. Although there are some residential hospice facilities, most hospice care takes place in the patient’s home or the home of a loved one, and less frequently in hospitals and nursing homes.
Hospice care is far less expensive than other types of end-of-life care (e.g., aggressive chemotherapy). Hospice patients are more often able to die at home. According to the National Hospice and Palliative Care Association, three fourths of the people who choose hospice care die at home, in a nursing home, or other residential facility.
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 2008 had a non-cancer diagnosis, such as heart disease, kidney disease, emphysema, Alzheimer’s or other dementia, HIV/AIDS, or an unspecified debility. While the vast majority of hospice patients are people over 65, some hospices have clinical staff with expertise in pediatric hospice care. Children and young adults account for less than 1% of hospice admissions. (See also “Dying Children and Their Families” below.)
As more Americans choose palliative care, the range of available options is expanding. The number of palliative care programs in hospitals is increasing rapidly. In addition, programs called open-access hospice, bridge hospice, or outpatient palliative care offer patients both comfort/supportive care in their home, nursing home, or assisted living facility plus the opportunity to continue disease treatment, such as chemotherapy and radiation. Patients also have access to an interdisciplinary team of experts to address psychosocial and special care needs. The hope is that these new programs will encourage more patients and their families to enter hospice earlier and avoid the costly final weeks of hospitalization that so many Americans experience at the end of life (Abelson, 2007; Wright & Katz, 2007).
Open-access programs are generally available through larger hospice facilities (those with an average daily census of 400), such as Capital Hospice in Washington, D.C., Continuum Hospice Care in New York City, and larger insurance companies such as UnitedHealth and Aetna. In some areas, smaller agencies have developed bridge programs. For example, the Visiting Nurse Association (VNA) of Santa Cruz County in California has a program called Advanced Illness Management (AIM) to meet the needs of patients “who are approaching the end of their lives but are not ready for hospice care.” AIM nurses and social workers provide a full range of home care services plus opportunities to discuss with patients the kind of care they would want when they are no longer make decisions for themselves (Palo Alto Medical Foundation, 2010).
The costs involved in aggressive treatment of cancer or congestive heart failure at the end of life are a major reason why most hospices cannot afford to offer open access. Medicare reimburses about $130 a day for hospice care at home and about $560 for inpatient care to treat symptoms that cannot be managed at home. However, the cost of drugs alone for congestive heart failure can reach $1,300 per day (Abelson, 2007; Wright & Katz, 2007).
To access the Medicare 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.
The patient must agree to forgo disease treatments such as chemotherapy and radiation. This requirement is one reason some people avoid hospice until the last days or weeks of life and continue with aggressive, expensive treatment, which may make little or no difference in survival time and may diminish the quality of life in the process.
When the patient asks, “How long do I have?” the physician often cannot answer with certainty. One study showed that only 20% of physicians’ estimates of survival time were even approximately accurate (Christakis & Lamont, 2000); more than half were overly optimistic. An estimated 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.
Hospice 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.
HOSPICE SERVICES COVERED BY MEDICARE
Medicare covers these hospice services and pays nearly all of their costs:
All Medicare-certified hospices are required to employ physicians and nurses with special expertise in pain management and symptom relief. Non-pain symptoms include constipation, dyspnea, nausea and vomiting, and dry mouth. Bereavement and spiritual counselors are also available to help the dying and their families explore their needs and preferences as they come to terms with death. The hospice team includes:
Where Americans die is determined not only by race/ethnicity and socioeconomic status but also by cultural and spiritual/religious beliefs and by where people live. Access to palliative care and hospice programs varies from state to state and between rural and urban populations.
People living in rural counties have limited access to hospice and palliative care. One study of eight states found that more than two thirds of rural counties did not have hospice providers; Vermont was the exception (Madigan et al., 2009). Factors that determined whether a Medicare-certified hospice was available in rural counties included physician availability and minority composition of the county. The higher the physician rate and the smaller the minority population the more likely that a Medicare-certified hospice was available (Campbell et al., 2009).
A nationwide survey of palliative care programs in hospitals revealed wide geographic variation in the prevalence of these programs, from 10% in Mississippi to 100% in Vermont. The national average was 52.8%, and these programs were most commonly found in nonprofit institutions. States with a higher prevalence of palliative care programs had “fewer Medicare hospital deaths, fewer intensive care unit/cardiac care unit (ICU/CCU) days and admissions during the last six months of life, fewer ICU/CCU admission during terminal hospitalizations, and lower overall Medicare spending/enrollee”(Goldsmith et al., 2008).
Percentage of mid-size and large hospitals with a palliative care program (50+ beds).
(Source: © 2011, Center to Advance Palliative Care. Used with permission.)
Disparities between white and non-white populations exist across the spectrum of healthcare, including end-of-life care. One study of Medicare beneficiaries of all race/ethnic groups found that most express a wish to die at home in the event of a terminal illness and not to receive life-prolonging drugs or mechanical ventilation. However, blacks were more likely than Hispanics and non-Hispanic whites to prefer life-prolonging drugs and mechanical ventilation. Both blacks and Hispanics were more likely than whites to prefer spending their last days in the hospital. This study also found that living alone was associated with a preference for dying in the hospital, and blacks were more likely to live alone (Barnato et al., 2009).
A study of more than 40,000 patients with advanced cancer found that black and Asian patients were more likely than whites to be hospitalized frequently and for prolonged periods, be admitted to the ICU, die in the hospital, and be enrolled in hospice at lower rates (Smith et al., 2008).
Other disparities in end-of-life care include lack of adequate pain care in minority patients and poor management of pain by healthcare providers. A review of almost two decades of research revealed “the persistence of racial and ethnic disparities in acute, chronic, cancer, and palliative pain care across the lifespan and treatment settings, with minorities receiving lesser quality pain care than non-Hispanic whites” (Anderson et al., 2009).
Other factors contributing to disparities include lack of knowledge about end-of-life care options, mistrust of the healthcare system, and poor communication between clinicians and patients. Hospice care may be perceived as a luxury in some communities, even though Medicare and Medicaid benefits require little out-of-pocket expenditure.
Language differences can lead to misunderstanding and misinformation that affect medical decision making. For example, hospice translates to hospicio in Spanish, meaning “orphanage” or “place for poor people.” One caregiver told a researcher, “I didn’t know what hospice was. I thought it was a place worse than a hospital” (Kreling et al., 2010).
(Some of these disparities may be related to ethnic, cultural, and spiritual preferences, discussed below under “Cultural Sensitivity.”)
Whenever there is someone in a family who has long been ill, and hopelessly ill, there come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.
—ANTON CHEKOV (“Peasants,” 1904)
The right-to-die movement in America is gaining public support, indicating widespread dissatisfaction with the quality of end-of-life care. The right-to-die concept includes assisted suicide (also called physician aid in dying (PAD)) and voluntary active euthanasia. In assisted suicide, the healthcare provider, usually a physician, provides the means to end life, such as a prescription for a lethal amount of drugs or the drugs themselves, or other measures, by a person who has knowledge of the patient’s intention (ANA, 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 legal in only three states—Montana (Johnson, 2010), Oregon, and Washington (Paddock, 2009)—and the guidelines for practice are very stringent.
Interviews with families and health professionals suggested several reasons that patients chose to hasten death, including depression, poor social support, and uncontrolled physical symptoms. A study of Oregonians who either requested PAD or contacted a PAD organization found that the most important reasons for requesting PAD were wanting to control the circumstances of death and to die at home; loss of independence; and concerns about future pain, poor quality of life, and inability to care for oneself (Ganzini et al., 2009). The study authors concluded: “When confronted with a request for PAD, healthcare providers should first work to bolster the patient’s sense of control and to educate and reassure the patient regarding management of future symptoms.”
Healthcare providers acknowledge that there is an underground practice of assisted suicide in the United States. Some maintain that the principle of double effect is used to justify what is really assisted suicide. The principle of double effect states that the potential to hasten imminent death is acceptable ifit is the unintended consequence of the primary intention to provide comfort and relieve suffering.
Palliative sedation therapy (PST) is considered a last-resort option in end-of-life care. The National Hospice and Palliative Care Organization (NHPCO) defines palliative sedation as “the lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable.” In the case of terminally ill patients whose death is imminent (i.e., within 14 days), NHPCO “believes that palliative sedation is an important option to be considered by healthcare providers, patients, and families.” Although palliative sedation is a medical treatment, NHPCO recommends that an interdisciplinary team confer about its use in each patient for whom it is being considered (Kirk & Mahon, 2010).
Palliative sedation therapy is controversial. Some opponents have incorrectly equated it with euthanasia. Euthanasia and PST are different in intention (relief of intolerable suffering in PST, killing the patient in euthanasia), in procedure (use of a sedative for symptom control in PST, use of a lethal agent in euthanasia), and in outcome (alleviation of suffering in PST, immediate death in euthanasia).
A prospective multicenter study of more than 500 hospice patients found that “when used to relieve refractory symptoms, palliative sedation does not shorten life and does not need the doctrine of double effect to justify its use from an ethical point of view” (Maltoni et al., 2009). Delirium and/or agitation were the primary reasons for using palliative sedation. These findings confirm those of previous studies.
Two types of palliative sedation may be used in end-of-life care: proportionate palliative sedation (PPS) and palliative sedation to unconsciousness (PSU). In PPS, medications such as benzodiazepines are increased gradually together with other symptom-relieving measures until suffering is relieved during both waking and sleeping hours. For most patients, the effect of PPS will be less than total unconsciousness, allowing the patient to rest comfortably but to be aroused. Occasionally, PPS requires sedation to unconsciousness, which is acknowledged as a possible but unintended side effect (Quill et al., 2009).
In PSU, unconsciousness is the intended goal of sedation rather than a side effect. Medications are increased rapidly over minutes and hours to achieve unconsciousness and left at that level until death occurs. PSU is usually administered when the imminently dying patient finds severe physical symptoms intolerable despite state-of-the-art palliative care, for example, in the case of severe refractory bleeding or inability to swallow secretions.
However, controversy surrounds the use of PSU to treat psychological, existential (a loss or interruption of meaning, purpose, or hope in life), or spiritual suffering. Some consider these to be outside the realm of a physician’s expertise, and others consider them within the knowledge, tools, and expertise of the interdisciplinary team. The ethics committee of NHPCO was unable to reach agreement on a recommendation regarding PSU (Kirk & Mahon, 2010).
Health professionals need to understand the difference between the practice of PPS and PSU and the ethical issues surrounding their use. Similarly, patients and families need to understand these last-resort options and make decisions about such end-of-life care before the need arises.
Palliative care and hospice programs and practitioners should have policies about how they approach intractable suffering at the end of life, including their approach to PPS and PSU. If they are not willing to provide PPS or PSU, they should inform all patients of this limitation at the time of enrollment… . The obligation of clinicians who care for seriously ill patients at the end of life to address intractable suffering requires that they become informed about available options and that they be as responsive as possible without violating fundamental ethical principles. (Quill et al., 2009)
Healthcare providers also need to recognize that the patient always has the right to stop unwanted medical treatments or procedures while they are in progress—as was the case prior to consenting. These procedures may include CPR, mechanical ventilation, and artificial nutrition and hydration.
A new consensus statement from the Heart Rhythm Society (2010) suggests that patients nearing the end of life (or their healthcare proxy) have the right to decide whether to have their pacemakers or other cardiovascular implants removed or deactivated. The statement was developed in collaboration with several organizations, including the American College of Cardiology and the American Heart Association. It explicitly states that removing an implanted cardiovascular device near the end of life “is not physician-assisted suicide or euthanasia.” However, it also states that physicians or other caregivers cannot be compelled to carry out a procedure that conflicts with their ethical values. In such cases, the physician cannot abandon the patient but rather should refer patients to a colleague willing to carry out the task.
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, M.D. (President’s Council on Bioethics, 2005)
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.
The authors of one recent study reported: “Between 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions.” Those who had advance directives (two thirds of the subjects) were more likely to receive the kind of care they wanted than those without these documents. The vast majority of those with advance directives chose limited care or comfort care rather than all care possible (Silveira et al., 2010).
In most states, an advance directive can be either a living will or a medical power of attorney, also called a durable power of attorney for healthcare, a healthcare proxy, or declaration or appointment of a healthcare agent. In California, the Healthcare Decisions Law combines the power of attorney and the declaration of a healthcare agent in a single document called the Advance Healthcare Directive. In Pennsylvania, the law specifies that if a person has not designated someone as a healthcare proxy, the decision-maker shall generally be a spouse, adult child, parent, adult sibling, adult grandchild, or close friend, in that order (Associated Press, 2007).
According to the President’s Council on Bioethics (2005), “advance instruction directives (or living wills), though valuable to some degree and in some circumstances, are a limited and flawed instrument for addressing most of the decisions caregivers must make for those entrusted to their care.” Rather than try to anticipate every aspect of future circumstances, the Council found that “advance proxy directives are much more valuable and should be encouraged … . Naming of proxy decision makers provides clear identification of who shoulders the responsibility to act for the patient and makes it clear to physicians and others with whom they must deal. Such knowledge makes it much more likely that there will be the desirable discussions between family and professional caregivers at all important junctures of treatment and care.”
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. Information about POLST programs in each state is available online at http://www.polst.org.
Do-not-attempt-resuscitation orders (formerly known as “do-not-resuscitate orders”) have been renamed to emphasize the minimal likelihood of successful cardiopulmonary resuscitation (CPR). Patients and families need to understand not only the unlikely success of resuscitation but also the risks involved, which include fractured ribs, damaged internal organs, and neurologic impairment. Although the patient (or family) must ultimately decide about whether to attempt CPR, healthcare providers need to explain that withholding CPR does not equate with letting someone die. Rather, as one physician suggested, a DNAR order should be considered an Allow Natural Death order, “which is the right thing to do in many cases” (Borenstein, 2008).
The DNAR order should be readily available in the event of an emergency to ensure that the patient’s wishes will be honored. It should be posted prominently, either on the head or foot of the bed, or if the patient is at home, on the refrigerator. The specifics of the order should also be carefully documented in the patient’s chart. 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 (MV) can be spelled out in the patient’s advance directive. Some patients choose to forgo MV, believing that it merely prolongs the dying process. Others choose to have MV when they can no longer breathe on their own. Choosing MV may reflect the erroneous belief that this life-sustaining treatment can improve the patient’s prognosis.
Depending on the physician, choosing MV may affect the physician’s certification of the patient as terminal and therefore eligible for hospice benefits. Use of MV requires that the patient lie in bed or sit in a chair with restricted movement. If an endotracheal tube is used, the patient will not be able to speak or swallow. Mechanical ventilation also increases the risk of pneumonia because it prevents patients from coughing effectively and allows fluid to build up in the lungs. Once MV is started, the decision to withdraw it may present a legal and ethical controversy for the physician and the family. In some cases, withdrawal of this life support may require a court order.
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 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 the 102 patients who chose voluntary dehydration and starvation, 94 experienced what nurses described as “good” deaths, involving little pain or 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.
Decisions about whether to have ANH involve weighing the potential benefit and the burden to the patient. Clinicians need to help families understand that forgoing ANH is not “killing” or “starving” the patient. 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.
There is widespread use of feeding tubes at the end of life, particularly in patients with Alzheimer’s disease or other cognitive impairment, even though “there is insufficient evidence to suggest that enteral tube feeding is beneficial in patients with advanced dementia” (Sampson et al., 2009). (See “The Patient Who Has Dementia” below.)
Research suggests that people who choose not to have ANH do not suffer due to hunger or thirst. Furthermore, without ANH, patients are less likely to experience bloating or to develop pleural effusions (fluid around the lungs), which can cause shortness of breath, or fluid in the throat, which requires suctioning. Studies also indicate that forgoing artificial hydration increases the body’s production of endorphins (natural pain-relieving hormones), making the patient more comfortable and less likely to experience pain (Lynn & Harrold, 1999). The only side effect of dehydration at the end of life is dry mouth, which can be relieved by good mouth care, ice chips, or moistened sponge swabs.
Although talking about illness and death can be difficult for both health professionals and patients, studies show that most patients want to have this discussion. Sharing bad news while maintaining hope is a delicate balance that takes practice to achieve. Health professionals need to support the patient’s and the family’s hopes for prolonging life as well as their hopes for peace and dignity throughout illness, dying, and death. Patients should never be told, “There’s nothing more we can do,” because this discounts what can be done to improve the quality of whatever life remains. Effective management of pain and other symptoms as well as emotional and psychological support of the patient and family are always possible.
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 (2005)
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, 2005).
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.
Raising the topic of advance directives can also help to open the discussion of what the patient wants, needs, expects, and fears during this final phase of life. The following questions may be helpful:
The physician is most likely to initiate the conversation, but nurses and other healthcare providers should also be prepared to discuss these issues as needs and circumstances change.
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:
| Urgent Indications | Routine Indications |
|---|---|
| Source: Quill, 2000. | |
| Imminent death | Discussing prognosis |
| Talk about wanting to die | Discussing treatment with low probability of success |
| Inquiries about hospice or palliative care | Discussing hopes and fears |
| Recent hospitalization for severe progressive illness | Physician would not be surprised if the patient died in 6–12 months |
| Severe suffering and poor prognosis | |
FAMILY CONFERENCES FOR PATIENTS DYING IN THE ICU
End-of-life family conferences are an important part of ICU practice in many hospitals because they help relieve stress and anxiety for those with loved ones dying in the ICU.
Researchers studying twenty-two 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.”
Guidelines for these conferences are based on the VALUE mnemonic:
Source: Lautrette et al., 2007.
Both patient and family need timely, clear information about prognosis. It is difficult, and often impossible, for clinicians to answer questions about “how long,” but it is possible to describe the probable course of a particular illness in understandable terms. This helps patients do what is most important to them, such as making a will, seeing family and friends, and telling loved ones. Clinicians tend to be overly optimistic when discussing prognosis, which can delay referral to hospice and cause unnecessary pain and suffering for the patient and family.
Explicitly discussing death helps the patient express fears and concerns about the dying process and allows the clinician to address them directly. For example, the patient may say, “I don’t want to die hooked up to machines” or “I don’t want any heroics.” This is an opportunity to allay that concern, for instance, by talking about hospice care.
GUIDELINES IN COMMUNICATING ABOUT ILLNESS AND DEATH
Source: Pantilat, 2001.
“The worst thing about using hospice care? The way they talk to you about death.” This Latino family caregiver’s response during a research interview (Kreling et al., 2010) reminds us that not all cultures share the same values and beliefs about end-of-life care.
Cultural sensitivity also includes the avoidance of stereotyping. Diversity of values and beliefs exists within each culture, making it important to ask open-ended questions rather than making assumptions based on appearances.
Approximately one third of America’s increasingly diverse population is composed of ethnic minorities whose values and beliefs may differ sharply from those of white Americans of European ancestry. These differences occur in at least three interrelated dimensions: communication of “bad news,” locus of decision making, and attitudes toward advance directives and end-of-life care (Searight & Gafford, 2005).
Whereas the mainstream U.S. model of end-of-life care values autonomy and “truth telling,” healthcare models in other cultures value beneficence, which includes protecting the patient from bad news about serious illness. In these cultures, disclosure of serious illness may be considered disrespectful, impolite, or even harmful to the patient.
Learning about the patient’s and family’s cultural values can begin with a simple statement followed by an open-ended question: “Some people want to know about their illness and others do not. Some would prefer that I talk with a family member. How do you feel about it?” This gives the patient the option to refuse or accept information about diagnosis or prognosis and to designate a family member to act as a surrogate
Researchers suggest three strategies for addressing the “secrecy” dilemma and other cultural differences in end-of-life care:
In Latino communities, promotores(as) may prove helpful in implementing these strategies (Kreling et al., 2010). “Promotores and promotoras are community members who promote health in their own communities… . As members of minority and underserved populations, they are in a unique position to build on strengths and to address unmet health needs in their communities.” (Migrant Health Promotion, 2010)
Some cultures emphasize family versus individuals (collectivism) and family decision making (familism) (Kreling et al., 2010). Protecting the patient from bad news means that decisions about care will be made by the family, by the physician, or by family/physician collaboration.
Preferences about end-of-life care are as diverse as America’s population. In communicating with patients and families about end-of-life care, it is important to be aware of different cultural attitudes and practices. For instance, completing advance directives is less common among Asian Americans, Hispanic Americans, and African Americans. One study showed that about two thirds of older white patients had completed advance directives, compared with only one third of older blacks (Johnson et al., 2008).
In a survey of Arab Americans, Hispanics, blacks, and whites, all of whom were 50 years or older, a majority of Arab Americans indicated a preference for being cared for by family rather than going 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 et al., 2006a).
The Duffy study also showed gender differences in end-of-life preferences. Both Hispanic and African American 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 (Bayer et al., 2006).
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.
Typical illness trajectories for people with progressive chronic illness. (Source: Adapted from Lynn and Adamson, 2003. Used with permission from RAND Corporation, Santa Monica, California.)
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.
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 the general planning of 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).
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 who die in nursing homes. Patients with other chronic diseases such as AIDS, sickle cell disease, and arthritis also suffer extreme pain, which may be ineffectively treated. Experts estimate that, when properly treated, almost all of these patients could gain relief from pain.
The patient’s preferences should define the goal of pain management. Some patients will choose to be completely pain-free, even if it means sedation. Others will choose only to control pain enough so that they can continue to function with alertness. If pain becomes severe at any time, but particularly in the last days or hours of life, it should be treated around-the-clock.
Pain not only hurts, but it is also physically and emotionally debilitating. Severe chronic pain can cause depression, anxiety, fear, diminished appetite, impaired sleep, and sometimes thoughts of suicide. When pain is relieved, many of these symptoms disappear. The patient then can focus on other important end-of-life issues, such as unfinished business with family and friends or spiritual or religious concerns.
Patients have a right to relief from pain. The Joint Commission requires that hospitals and other healthcare facilities regularly assess, monitor, and manage pain in all patients. Those facilities that fail to do so risk losing accreditation. Until all health professionals learn the principles of pain management explicit to palliative care, however, patients will continue to suffer needlessly.
Inadequate education of health professionals in pain management is only one reason why patients suffer. The other is general mistrust about the use of narcotic analgesics and worry about addiction or overdosing on these medications. They also may consider requests for pain medication as “giving up” or “giving in” to their disease. Clinicians can correct these myths and misinformation and reassure patients that managing their pain is fundamental to improving their quality of life.
Although addiction is not a concern when treating dying patients, tolerance to and dependence on opioids may develop over time. If tolerance to particular drugs occurs, it will be necessary to increase the dosage to gain relief. If dependence develops and the patient needs to be taken off the drug, it should be done gradually in order to avoid withdrawal symptoms.
Effective pain management begins with assessment of the patient’s pain. Because pain is a subjective experience, it is important to ask the patient to describe the pain in terms of location, intensity, and character. There are a number of pain assessment tools available; healthcare providers should consult their agency protocols.
Pain perception varies from person to person, depending on age, culture, emotional status, past experiences with pain, and the source and meaning of the pain. Some cultures dictate stoicism when experiencing pain, which may cause people not to admit pain or request medication. Men are more likely to “tough it out” because of cultural and gender attitudes.
Older adults may have a higher pain threshold than younger people or children due to normal age-related changes in neurophysiology. Because of their higher pain threshold, however, older patients are at risk for undertreatment of pain. They may have multiple chronic diseases and sources of pain as well as complex medication regimens that increase the risk of drug-drug and drug-disease interactions.
Visual, hearing, motor, and cognitive impairments can impede communication about patient’s pain. Anxiety and depression can exacerbate the pain experience, as can fatigue and sleeplessness. Untreated pain can then cause further sleeplessness, which leads to more fatigue, setting up a cycle of suffering.
Knowing the source of pain can be a relief in itself, particularly if the patient has imagined a worst-case scenario and the source of the pain turns out to be a minor 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.
Pain should be reassessed frequently and management efficacy reassessed when patients are transferred from home to hospital, nursing home, or hospice (NCI, 2010a).
Medications can make a drastic difference in the lives of those suffering with pain and they comprise an important aspect to end-of-life care in many instances. (A detailed description of pain medications is beyond the scope of this course, but the following provides basic information.)
The World Health Organization developed a three-step ladder approach to pain management (see figure).
The WHO three-step dosing model for the treatment of pain. (Source: Courtesy BiomedCentral.com.)
Using this guideline for managing pain does not mandate sequential use, particularly in terminal illness. Patients with severe pain may need to begin with step 3.
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 4g in 24 hours, particularly in patients with compromised liver function.
Step 2 and step 3 analgesics include the opioids, such as codeine, fentanyl, hydrocodone, hydromorphone, morphine, and oxycodone. In step 2, the opioid is combined with either acetaminophen or aspirin. In step 3, the opioid and a step-1 drug are combined with adjuvant drugs such as antidepressants.
Many opioids are available in sustained-release form as tablets and granules. Fentanyl is also available in a skin patch that will last up to 72 hours. However, sustained-release formulations should not be used for “rescue” dosing because they will not work quickly enough to relieve intense pain. In January 2010, FDA approved morphine sulfate oral solution for the relief of moderate to severe, acute and chronic pain in opioid-tolerant patients. The solution is available in 100 mg per 5 mL or 20 mg per 1 mL (FDA, 2010a).
When a patient is unable to swallow an oral medication, less invasive routes (rectal or transdermal) should be offered first. Parenteral methods should be used only when simpler, less-demanding, and less-costly methods are inappropriate, ineffective, or unacceptable to the patient. Intravenous (IV) or subcutaneous doses should be chosen over intramuscular (IM) injections. In general, assessing the patient’s response to several different oral opioids is advisable before abandoning the oral route in favor of anesthetic, neurosurgical, or other invasive approaches (NCI, 2010a).
Oral transmucosal fentanyl citrate is used for the relief of breakthrough pain. The lipid solubility of fentanyl allows rapid onset of pain relief (NCI, 2010a). Researchers reported that an intranasal fentanyl spray, 50 μg to 100 μg, showed an effective clinical response at 10 minutes (Kress et al., 2009)
Adjuvant therapies for intractable pain include radiation therapy (to shrink tumors or relieve bone pain), radiofrequency ablation for bone pain (CITE), surgery to debulk a tumor, nerve blocks, or intrathecal pumps to deliver large doses of opioids without systemic sedative effects.
Skilled use of opioids affords effective pain relief to most patients. Like all drugs, however, they have side effects, some of which can be uncomfortable or even painful in themselves. They include drowsiness, nausea and vomiting, dyspnea (shortness of breath), dry mouth, and constipation. Some side effects ameliorate after a few days, and most can be prevented or treated successfully.
Drowsiness frequently occurs at the beginning of opioid therapy, not only from drug action on the brain but also because the patient has been sleep-deprived due to unrelieved pain. Once normal sleep patterns resume, the drowsiness generally lessens.
Nausea and vomiting 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 (e.g., from central nervous system tumors). These patients may benefit from a combination of corticosteroids and serotonin receptor antagonists.
Constipation may trigger nausea and vomiting in patients with advanced disease. Stimulant laxatives such as senna derivatives can promote gut emptying and offer relief.
Dyspnea (shortness of breath, difficult breathing) is common among dying patients, who may report a feeling of tightness in the chest or a feeling of suffocation. Dyspnea may be an initial effect of opioid therapy or may result from other causes, including pneumonia, pulmonary embolism, pleural effusion, bronchospasm, tracheal obstruction, neuromuscular disease, restricted movement of the chest or abdominal walls, cardiac ischemia, congestive heart failure, superior vena cava syndrome, or severe anemia. Treatment is determined by the diagnosis.
Three basic approaches are used to treat dyspnea in the dying patient: oxygen, opioids, and anti-anxiety medications. Nonpharmacologic methods such as meditation or guided imagery may also be effective. Although most patients are not hypoxic, supplemental oxygen may be helpful unless the cannula or face mask cannot be tolerated. Fresh outdoor air or a breeze from a fan may also afford relief. Low-dose immediate-release morphine, in either oral or buccal formulations, also can be effective.
Preventive measures against constipation should begin at the same time as opioid therapy. Normal bowel function varies from person to person, so it is essential to establish what the patient considers normal and whether he or she is having any difficulty with bowel movements. Preventive or treatment measures can then be tailored accordingly. Untreated constipation can cause bloating, abdominal pain, nausea and vomiting, overflow incontinence, fecal impaction, or bowel obstruction.
First-line therapy for constipation includes stool softeners and stimulant laxatives such as prune juice or senna derivatives. If these prove insufficient to maintain or restore normal bowel function, osmotic laxatives such as magnesium salts, sorbitol, or lactulose may be added.
A lubricant stimulant such as mineral oil may be used if the patient is able to swallow. However, mineral oil should not be given to patients who have difficulty swallowing because aspirating mineral oil can cause pneumonia. Mixing the oil with orange juice or root beer makes it more palatable. It should be given when the patient’s stomach is empty to avoid interference with fat-soluble vitamins.
If the patient is ambulatory, increased activity can help promote bowel function. Simple measures such as increased fluid intake, a regular toileting schedule, privacy, and, if the patient is bedfast, use of a bedside commode rather than a bedpan can be helpful. Peristalsis is generally strongest after eating, especially in the early morning.
Pain medications and many other pharmaceuticals (e.g., antidepressants, anticholinergics) can dry the lips and oral mucous membranes, leading to cracking, ulceration, and bleeding. Patients on oxygen therapy and those who have chosen to forgo artificial hydration and nutrition may also experience dry mouth. When increasing fluid intake is not an option, lubricants such as liquid vitamin E or Blistex applied to the lips can help prevent cracking. Mouth swabs moistened with water or alcohol-free mouthwash can be used to relieve discomfort and to clean teeth, gums, and tongue. Limit or avoid use of any products containing alcohol, which can further dry the mouth.
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. 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, delusions or hallucinations, and emotional lability may all occur. The agitation, moaning, and grimacing of delirium may be misinterpreted as signs of pain. Delirium can create distress for both patient and caregivers, interfering with patient comfort and meaningful interaction with family members.
Many episodes of delirium can be effectively treated and in some cases prevented. Risk factors for delirium include cognitive impairment, sleep deprivation, immobility, visual impairment, hearing impairment, and dehydration. Early identification and interventions to address these risk factors can significantly reduce the number and duration of episodes of delirium in older patients (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, they 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).
Not all pain relief comes from medications. Other methods, some of them simple, may increase patient comfort and well-being as they augment the effects of drugs. For example, massage or application of heat or cold may help relieve musculoskeletal pain. Repositioning the patient can sometimes relieve pain. Physical therapy may also be beneficial.
Complementary therapies such as acupuncture, guided imagery, biofeedback, hypnosis, progressive muscle relaxation (e.g., listening to audiotapes of relaxation techniques), meditation, and music therapy can also be helpful, not only in relieving pain but also in relieving emotional and psychological distress. Psychotherapy, particularly for patients suffering from depression, can have a positive effect on patient’s perception of pain and response to pain medications. Support groups and pastoral counseling may also be helpful to some patients by reducing psychological distress.
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 (1996) defines healing as “an inner process through which a person becomes whole,” a process of transforming one’s life in a variety of ways in the face of death. This shift in expectations can help maintain hope, seen as crucial in overall adaptation to crisis. For example, the patient who has confidence that pain and suffering can be controlled will have hope for future quality of life. Patients who believe they are loved and cared for will have hope in their relationships.
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 those of death itself, of pain, of dying alone, and of being a burden. People with strong spiritual beliefs may not fear death but still fear the possibility of pain and suffering at the end of life. Health professionals with expertise in palliative care can reassure patients that pain and suffering will be relieved and that patients will not die alone.
Most people also have concerns about loss of dignity and control. Caregivers can provide comfort by allowing the person to express any fears and concerns about dying and by reassuring the person that they will honor advance directives. They include patients in discussions about issues that concern them. They listen to patients reminisce about their lives. They may simply keep the person company; talking, watching movies, reading, or just being there also can be comforting (NCI, 2002).
It is now clear that depression at the end of life is common, underdiagnosed, and undertreated.
—JAMES HALLENBECK (2000)
Sadness and grief are normal reactions to learning that one has a terminal illness, but not all patients experience true clinical depression. 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 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
Depression is treatable both with antidepressant medications and psychotherapy. Depression in dying patients is not markedly different from depression in other medical conditions. However, treatment may need to be modified because of other factors, particularly other medications. Patients with mild depression may be helped by individual or group counseling with a mental health professional. More intense depression will likely require pharmacologic management in addition to counseling.
Recognizing the symptoms in people with terminal illness and referring them for appropriate treatment can greatly improve their quality of life.
Anger is common during terminal illness. Patients may express anger at the illness, the side effects of medications and other treatments (or the failure of same), disruption in life plans, changes in social role and lifestyle, and the prospect of death. Validating that anger is a normal reaction to terminal illness can open a discussion of how to deal with the anger and make the most of the time remaining.
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 loss.
Grief is the normal human response to loss, and it is universal, individual, and unpredictable. Researchers have described various stages of grief, but people do not always move through such stages sequentially or predictably. Instead, each person progresses at his or her own pace and may recycle through one or more of the stages, which include:
An individual’s experience of grief is determined by his or her values, cultural norms, and circumstances. In uncomplicated grief, an individual is able to move through the stages and emerge from the grieving process. Complicated grief (also called chronic grief or dysfunctional grief)is an exaggeration of the normal process of grieving, often resulting from multiple losses and making it difficult for an individual to reorganize and move on.
The dying patient and the family experience anticipatory grief, a process of working through their intellectual, behavioral, and emotional responses to what the expected death will mean when it happens. During this process, families often try to resolve personal and family issues, offer love and support, involve the dying person in plans for a memorial service, and determine any last wishes not yet spelled out in a legal document.
Bereavement is being deprived of someone through death and the feeling of desolation that follows. For example, a bereaved husband has been deprived of his wife through death. The term can also be applied to families, communities, and even an entire nation. 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.
National and international palliative care guidelines acknowledge the importance of religion and/or spirituality in illness, particularly at the end of life, and support care that attends to the spiritual needs of patients (WHO, 2004; National Consensus Project, 2009). Religious and spiritually beliefs and practices are highly individual, although research shows some racial/ethnic similarities. Blacks and Hispanics are more likely to consider religion/spirituality (R/S) more important than whites.
A study of nearly 500 elderly people living in New England found that those who were deeply religious had better quality of life during their last year of life than those to whom religion was less important. The deeply religious were more likely to see friends, had better self-rated health, experienced fewer depressive feelings, and found life more exciting than those who were less religious. Those who were disabled appeared to benefit more from both public and subjective religious involvement than those not disabled (Idler et al., 2009).
An earlier 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). Nearly half of those studied reported that their spiritual needs were not supported by religious communities or the medical system.
A study of patients with advanced cancer identified five aspects or themes of R/S that need to be addressed in meeting patients’ end-of-life needs: coping, practices, beliefs, transformation, and community. Patients felt that their faith helped them cope with the cancer experience and that practices such as prayer, both alone and with others, were meaningful. They believed that the trajectory of their lives was God’s will but that they should do their best to live right. They felt that their R/S had transformed how they experienced cancer and the end of life, and depended on support from their faith community. Understanding these themes and incorporating them into care can improve the quality of life of dying patients (Alcorn et al., 2010).
Our country has been shifting responsibility for caregiving back to families…. Most families take on this responsibility without the necessary education and support, and the resulting stress compromises their health.
—DIANA J. MASON (2008)
Family caregivers make up a “shadow workforce” that bears an enormous burden during end-of-life care of a loved one. They play a major role in actual patient care and in decision making about care provided by others. 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, they risk physical injury. Clinicians need to anticipate this risk and offer assistance with physically strenuous aspects of care.
Even though the Medicare hospice benefit relieves some of the financial burden of serious illness, families can still face severe economic consequences. Many caregivers must give up their paying job or make major life changes. Nearly one third of caregivers lose most or all of their family savings due to a loved one’s illness. In our society, African Americans and Hispanic Americans face greater economic hardship from caregiving. Some patients may make choices about care solely to avoid being a burden to the family, such as choosing only comfort measures over life-extending care.
Caregivers experience many emotions, ranging from sadness, resentment, anger, and a sense of inadequacy, to deep gratitude for being able to care for the loved one. Physical exhaustion, economic worries, disrupted routines, and seemingly endless responsibilities can lead to mental health problems such as anxiety and depression. Inadequate or interrupted sleep is also common among caregivers, as is loss of social and leisure time.
Health problems related to caregiving are most pronounced among those with limited education and can include increased risk of cancer as well as increased mortality, particularly among older adults (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.
Caregivers often don’t recognize what their own needs are. It’s hard to ask for anything for yourself, and so physicians and community-based service providers need to be proactive in asking of the informal caregiver, “How are you doing?” because that’s going to impact the whole family.
—MARY JO GIBSON (2007)
The negative health effects of caregiving can be at least partially alleviated by thorough assessment of caregiver needs leading to a care plan with support services. Respite care, caregiver support groups, and skills-training interventions can further reduce caregiver burden. A prospective study of dementia caregivers showed that the benefit of these interventions extended beyond coping with their loved one’s illness to reducing the incidence of complicated grief after the loved one’s death (Schulz et al., 2006).
Cancer is now the leading cause of death in Americans under age 85. About 1 in 3 women and 1 in 2 men will develop cancer during their lifetime. Although earlier detection and newer therapies have improved 5-year survival rates for many types of cancer, 1 in 4 Americans will die of cancer (NCI, 2010a).
Even 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. One large study (Earle et al., 2004) showed that treatment of cancer patients near death is becoming increasingly aggressive, leading to more emergency department and ICU admissions during the last few weeks of life. Although hospice use is increasing, a more recent study showed that many cancer patients are entering hospice care just days before death. Aggressive use of chemotherapy at the end of life is not uncommon, and physician practice rather than patient preference appears to be the major driver. (Earle et al., 2008).
People with terminal cancer have the same physical and emotional needs as any dying person, not the least of which is pain management and its side effects. Not every person with terminal cancer experiences excruciating pain, but it is not uncommon. Other physical needs arise as the disease progresses, affecting all major body systems, and should be managed based on the goals of patient comfort and quality of life.
The person with advanced cancer may also be suffering the effects of chemotherapy and radiation therapy. A recent study showed that people with cancer “face more precipitous end-of-life challenges to quality of life than do other terminally ill persons.” Healthcare professionals need to discuss these issues with the patient and family so they may be better prepared for the time ahead (Downey & Engelberg, 2010). Special problems for the person with advanced cancer include:
As cancer metastasizes to liver, lungs, bone marrow, brain, bowel, or adrenal glands, it disrupts the function of those organs. For example, liver metastases can impair digestion and cause nausea and vomiting. Cancer that has metastasized to the bowel can interfere with elimination, even to the point of fecal impaction. Brain tumors increase intracranial pressure as they grow and can cause changes in mental status, vomiting, headache, dizziness, and seizures. Growth of metastatic breast, lung, or prostate cancer may compress the spinal cord and lead to irreversible paraplegia if not treated by radiation to shrink the tumor. Decisions concerning whether and how to treat these complications should involve the patient and the family as well as clinicians.
Most people with cancer are at least mildly anemic, but chemotherapy and radiation therapy can exacerbate the problem. Erythropoietin (Epogen) has been used to treat the anemia; however in 2010, the Food and Drug Administration (FDA, 2010b) issued a safety announcement indicating that the use of Epogen and other erythropoiesis-stimulating agents (ESAs) such as Procrit and Aranesp can increase the risk of tumor growth and shorten survival in patients with cancer. ESAs can also increase the risk of heart attack, heart failure, stroke, or blood clots in patients who use these drugs for other conditions.
The FDA requires that all ESAs “be prescribed and used under a risk management program, known as a risk evaluation and mitigation strategy (REMS), to ensure the safe use of these drugs.” A Medication Guide explaining the risks and benefits of ESAs must be provided to all patients receiving ESAs. Only hospitals and healthcare professionals who have enrolled in and completed a special training program on ESAs are permitted to prescribe and dispense ESAs to patients with cancer. (The ESA APPRISE [Assisting Providers and Cancer Patients with Risk Information for the Safe use of ESAs] oncology program was developed by Amgen, maker of ESAs. Amgen is required to oversee and monitor the program to ensure that hospitals and healthcare professionals are fully compliant.)
Cancer that metastasizes to the bone marrow can cause leukopenia (decreased leukocyte count), which increases the risk of infection, and thrombocytopenia (decreased platelet count), which increases the risk of hemorrhage. For example, liver metastases may rupture spontaneously and cause hemorrhage.
Anorexia is loss of appetite, which may be related to both physiological and psychological factors. Cachexia is a malnutrition syndrome that includes anorexia; early satiety (feeling of fullness after only a few mouthfuls of food); weight loss; anemia; weakness; and alterations in taste and in metabolism of proteins, lipids, and carbohydrates. Cachexia results in wasting and emaciation and is one of the leading causes of death in cancer patients.
Hypercalcemia is an elevated level of serum calcium and the most common life-threatening metabolic disorder associated with cancer. 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 created a barrier to seeking hospice care for people with other terminal conditions. People with Alzheimer’s disease (AD) or other dementias account for only 11% of the annual hospice census (NHPCO, 2009).
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. 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 patient had been in pain “often” or “all of the time” during end-of-life care (Schulz et al., 2003).
In the late stages of dementia, patients may become unable to consume sufficient oral feedings to prevent weight loss. When the patient loses the ability to swallow, he or she is considered terminal. This is a normal occurrence in the final stages of AD. 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).
If the patient’s advance directive indicates that he or she does not want artificial nutrition and hydration (ANH), caregivers and health professionals must respect that decision. However, if the decision was not made earlier, the patient’s surrogate or proxy decision maker, together with the physician and other members of the 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. On the contrary, tube-fed patients with dementing illnesses “typically die within a year, have increased lung infections, and show increased agitation requiring more use of physical restraints and sedation, which in turn results in more instances of painful skin breakdown” (American Hospice Foundation, 2007).
Families may find that nursing homes promote the idea of artificial nutrition not to benefit the patient but for financial reasons. “Systemwide [reimbursement] incentives favor use of tube feeding and may influence substitute decision-makers, bedside clinicians, gastroenterologists and administrators regardless of patient preferences or putative medical indications” (Finucane et al., 2007).
HIV/AIDS remains an incurable disease, killing 14,000 people in the United States each year. 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.
Fewer than half of all people with HIV/AIDS have talked with their physician about advance care directives. 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, 17% wanted CPR, and 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, based on ignorance about HIV transmission or unresolved homophobia. Families may live far away, since many people with AIDS have migrated to large urban areas that are more tolerant of nontraditional lifestyles, perhaps leaving them without a support system when their disease progresses.
Grief and bereavement issues are intensified in many people with AIDS because of multiple losses. People with advanced AIDS may have lost many friends to this disease and have others concurrently coping with HIV. These various losses can occur close together, leaving no opportunity for resolution. One-on-one counseling or a grief support group can help the bereaved patient and afford an opportunity to discuss his or her own concerns and fears about the death of a friend or loved one.
Suffering is nearly universal in pediatric cancer patients and their families. Addressing that suffering is an ethical imperative.
—BAKER ET AL. (2008)
Learning that their child has a life-threatening illness is one of the most unnatural and difficult events in any parent’s life. Yet each year parents across the United States confront this tragedy as 50,000 children die from life-threatening conditions: extreme prematurity, severe birth defects and congenital anomalies, cancer, HIV/AIDS, progressive metabolic disorders, and other diseases and disorders. More than 28,000 infants die before their first birthday, generally from conditions existing at birth (CDC, 2010).
The remarkable resilience of children can make it difficult to predict whether treatment of life-threatening conditions will end in cure or death. More than half a million children in the United States are coping with complex chronic and life-threatening conditions. These children and their families need and deserve palliative care beginning at the time of diagnosis so that treatment is not limited to the disease process itself. This gives families more time to cope with the possibility that their child will die even as they hope for cure. If it becomes clear that cure is no longer possible, the child may be able to receive hospice care at home rather than in the hospital.
For example, Massachusetts now has a Pediatric Palliative Care Network of hospices that provide free palliative care to children (up to 19 years old) with potentially life-limiting illnesses and their families, not just those who have a 6-month prognosis. It offers a total approach to care—physical, psychological, social, and spiritual. Services include pain and symptom management for the ill child, counseling and spiritual care for parents and siblings, and volunteer assistance with errands (Pediatric Palliative Care Network, 2010).
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. Parents are greatly concerned that their child not suffer at the end of life. When pain or other symptoms are not treated or are treated unsuccessfully in their dying child, parents are likely to experience long-term distress (Hinds et al., 2005). Families who express concerns about addiction from narcotic pain medication need to be reassured that there is no evidence to support the idea. Like adults, children may develop a tolerance to sedatives and opioid medications, so that the dosage or the choice of drugs may need to be changed.
Parents of children who have life-threatening conditions want to be kept informed about their child’s condition and what to expect throughout the course of the illness. They may also want information about caring for their child at home and about how to support siblings of the ill child.
Linguistic and cultural differences may prove especially challenging in pediatric palliative care. These issues can interfere with parents’ ability to participate fully in their child’s care and “contribute to frustration, anger, and sadness for parents long after their child’s death” (Davies et al., 2010). Therefore, healthcare providers need to ensure that all parents receive clear factual information and that the family can understand and respond to questions and emotional concerns. This fosters trust in the relationship and reduces distress and anxiety in the parents and family.
PATTERNS OF INFORMATION SHARING
Researchers (Davies et al., 2010) interviewed Chinese and Mexican parents who had experienced the death of a child about information shared by providers (primarily physicians) during their child’s illness. Nurses, social workers, chaplains, interpreters, and other parents were also important sources of information.
The parents’ responses revealed four patterns of information sharing:
Parents who spoke little or no English feared asking questions because they were afraid the provider would answer in English and that they wouldn’t understand or be able to respond in English. Some were not told about hospital services such as interpreters or social workers. Other patients felt ignored. Parents given no information reported feeling lost, alone, and “in the dark” about what to do. Those who felt ignored were frustrated and angry, although some parents believed it was their own fault because they could not communicate with providers.
Parents given only basic information didn’t always understand the implications. As one said, “They told us she would probably die, but they didn’t say, ‘This is how she’s going to die.’ I’d never seen anyone die, let alone my infant.” Like those parents who were given no information, they reported feeling powerless, distressed, and fearful.
Parents who received basic information plus implications felt better able to make decisions and less distressed and angry. In some cases, family doctors were better at explaining things than doctors in the hospital.
Healthcare providers who offered not only basic information and implications but also addressed parents’ questions, concerns, and emotions were most helpful to parents. One mother said, “He was always there to tell us bad news. He cared about what you were going through. He made sure you understood. He asked, ‘Do you know what this means?’ or ‘Do you need to know anything else?’”
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 keeping the diagnosis secret denies the child’s right to express feelings, fears, and questions. Children pick up cues from parental and/or sibling behavior that something bad is going to happen, and they need to express their feelings.
A Swedish study of more than 400 parents who had lost a child to cancer found that none of the parents who talked with their child about death regretted it. More than one fourth of those parents who sensed that their child was aware of his or her imminent death but did not talk with their child about death regretted avoiding this discussion (Kreicbergs et al., 2004).
Keeping the diagnosis secret also risks having someone else reveal the information, eroding the child’s trust in the parents. Health professionals can offer support and guidance to the parents by asking “How will you tell your child the diagnosis?” and then suggesting how and what to tell the parents based on the child’s age. Naming the illness helps explain what to expect in terms of procedures and possible outcomes. Once the child learns the diagnosis, he or she may choose not to talk about death. Parents and health professionals need to respect that wish.
Communicating with children about death involves more than just words. Health professionals need to assess the child’s body language and encourage expressive outlets for feelings such as drawing, play with dolls, puppets or stuffed animals, writing stories, or working with modeling clay.
Both the child and the family generally fear what the actual death will be like, particularly whether it will be painful. The child fears dying alone; the family fears not being with the child when death occurs. Having family members nearby enhances the child’s feelings of security and safety. Physical contact—touching, hugging, holding hands—is comforting and helps the child feel more secure. When parents or siblings need to leave, it helps to tell the child when they’ll be back.
| Age | Concept of Death | Interventions |
|---|---|---|
| Source: Hospice Net, 2010. | ||
| 0–3 years | None | Provide physical comfort, familiar people, favorite toys, and consistent care. Use simple language to communicate. |
| 3–5 years | Believes death 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 (i.e., “dead”; “dying”) |
| 5–7 years | Begins to understand death as final but does not see it as natural. May believe 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. |
The legal responsibility for decisions about a child’s treatment rests with parents. However, clinicians should encourage parents to involve the child in decisions about continuing treatment aimed either at cure or at moving to palliative care. Adolescents may have very definite ideas about the course their treatment should take.
Both the child and the family need to understand what palliative care means. For example, they need to know the risks as well as the potential benefit of CPR. Clinicians should explain that “No code” does not mean “No care” but just a different kind of care aimed at comfort and maximum enjoyment of the time they have left with their child.
Children are not covered by the Medicare hospice benefit. Consequently, hospice care for children can impose a tremendous financial burden on families, which is one reason why so few children under age 17 are in hospice care. Medicaid, a jointly funded federal-state health insurance program for people who need financial assistance for medical expenses, must provide home care services to people who receive federal income assistance such as Temporary Assistance to Needy Families (TANF).
Medicaid coverage includes part-time nursing, home care aide services, and medical supplies and equipment. Information about coverage is available from local or state welfare offices, state health departments, state social services agencies, or the state Medicaid office.
Care of the family should extend into the bereavement period. If the child is enrolled in hospice care, bereavement support for the family is part of the service provided. However, if the child dies in the hospital, there may not be a formal bereavement care program available. Adults often experience a more intense grief after their child’s death than after the death of a spouse or parent (Bradshaw et al., 2005). Bereaved parents have an increased risk of psychiatric hospitalization even 5 years after their child’s death and a higher risk of early death and poorer health outcomes (Li et al., 2005; Li et al., 2003).
Every day more than 1,800 U.S. veterans die (NHPCO, 2009); they account for more than one fourth of all deaths. Many are World War II veterans now in their eighties. Only 4% of veterans die in VA facilities. Most die either at home, in a nursing home or assisted living facility, or in a residential hospice.
Veterans benefits include palliative care and hospice care, but some veterans may not know or understand about these benefits (Running, 2009). 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:
Veterans’ preferences on end-of-life care may differ from the preferences of non-veterans. A small study of five racial groups (Arab Muslims, Arab Christians, Hispanics, blacks, and whites) found that veterans were less connected to their cultural groups than nonveterans. They were more likely than nonveterans to oppose the use of heroic measures. Veterans felt that their physicians should be candid about their diagnosis and prognosis. Although veterans were strongly in favor of do-not-resuscitate orders, they were less likely to have a healthcare proxy or advance directive than nonveterans (Duffy et al., 2006b).
Health professionals need to be aware that veterans dying in the VA system may have a higher degree of social isolation, lack of family support, or lower income than those outside the system. In addition, military training may have created in them an attitude of stoicism and a barrier to admitting pain or requesting pain medication. On the other hand, being in a hospice with other veterans offers a camaraderie that can be comforting.
Showing respect for a veteran and acknowledging service to the country is a first step in establishing a relationship. Simply asking, “What branch of the service were you in?” can be a key assessment question. Other factors that influence experiences at the end of a veteran’s life include age, whether enlisted or drafted, rank, and combat or POW experience (NHPCO, 2005). Not all veterans have served in combat; those who have may have witnessed horrific events.
Care during the last hours of life, called “active dying,” can have profound effects on the patient, the family, and healthcare providers who attend the dying. As Emanuel and colleagues (2010) wrote, “At the very end of life, there is no second chance to get it right.”
Some hospices have responded to this need with vigil programs, which train volunteers to serve as companions for families during the final hours. These specially trained volunteers are called doulas, a Greek term used for years to describe women who serve as home birth attendants, assisting midwives and mothers, “but the guiding philosophy is the same and borrows from Eastern religions: to honor the end of life as well as the beginning”(Gross, 2006). These doulas of death teach families what to expect during active dying and coach them through the process.
Certain signs and symptoms indicate when death is near (see table below). Not every patient experiences each of these signs and symptoms, and the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. The final stage of dying may take from 24 hours to as long as 10–14 days.
When it is apparent that death is imminent, health professionals need to alert the family and confirm the goals of care. This discussion should be documented in the patient’s chart, including the observation that the patient is dying.
| Signs and Symptoms | Interventions |
|---|---|
| Source: NCI, 2002. | |
| Drowsiness, increased sleep or unresponsiveness | When speaking, remember that the patient may be able to hear even if there is no response. Advise family members to address the patient as though he or she can hear. Do not shake the patient if he or she does not respond. |
| Confusion about time, place and/or identity of loved ones; hallucinations about people and places not present | Gently remind the patient of the time, date, and people who are present. Be calm and reassuring. |
| Decreased socialization and withdrawal | Speak to the patient directly and offer reassurance that he or she is not alone. The patient may need permission from the family to "let go." |
| Decreased need for food and fluids; loss of appetite | If the patient can swallow, offer ice chips, water, or juice. Keep the patient's mouth and lips moist with glycerin swabs and lip balm. |
| Loss of bladder or bowel control | Keep the patient as clean, dry, and comfortable as possible. Use disposable pads on the patient's bed and remove them when soiled. If urine output is excessive, a catheter may be used. In the case of continuing diarrhea, a rectal tube may be used. |
| Darkened urine or decreased amount of urine | A catheter may be necessary to avoid blockage. |
| Body temperature lowers; skin cool to the touch, particularly extremities. Skin color darkens to a grayish hue. Fingernail beds appear cyanotic. | Use 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 | |
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. How the body is cared for after death is often influenced by religion and/or culture, so health professionals should be aware of any preferences or limitations and comply with them.
If the family was not present at the time of death, the nurse or other responsible provider may make the body and the environment appear as normal as possible for the family to visit. If the patient or family has chosen cremation, or if there is no open-casket service planned, this will be the final opportunity for them to see their loved one.
All equipment and supplies are removed from the bedside and any soiled linens removed from the room. Agency policy may differ on how to deal with tubes that were in place at the time of death.
Placing the body in a supine position with a pillow under the head and shoulders avoids discoloration of the face. Eyelids are closed (holding them closed for a few seconds helps them to remain closed). If the person wore dentures, those are inserted to give the face a more natural appearance. Placing a rolled towel under the chin will hold the mouth closed. The arms are positioned either at the sides of the body or across the abdomen. The identifying wristband is left on unless it has become too tight due to fluid retention.
Any soiled areas of the body are washed and absorbent pads are placed under the buttocks. A clean gown is placed on the body and the hair is brushed or combed. Any jewelry is removed, except for a wedding band, which is taped to the finger. The body is carefully covered up to the shoulders with clean bed linens. All belongings of the deceased are listed and placed in a safe storage area for the family.
Soft lighting is generally preferred, and chairs may be made available for family members. Clinicians need to reassure family members that they should take as much time as they need to say their last 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 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:
[C]linical 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.
On any given day more than 100,000 people are waiting to receive an organ transplant, about 75 people receive a transplant, and 20 people die waiting. One organ donor may save up to eight lives (DHHS, 2011). The public has a generally favorable attitude about organ donation for transplants; however, not every clinician broaches the subject with patients since they may perceived as being more an advocate for the organ recipient than of their patient.
Ideally, questions about organ donation are discussed with the patient in the context of advance directives. This relieves the family of making the decision during the stressful time immediately after death. Unless the patient has documented the wish to become an organ donor, the family must decide. Federal law requires that only a designated representative of an 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.
Care does not end until the family has been supported with their grief reactions and those with complicated grief have been helped to get care.
—EMANUEL ET AL. (2010)
A family’s bereavement begins when their loved one is diagnosed with terminal illness, initiating a period of anticipatory grieving for both patient and family. After the patient dies, family members continue to grieve until they become reconciled to life without the deceased. For some, the process may take weeks or months; for others, grieving may take a year or longer. The Medicare hospice benefit includes bereavement care for the family for one year after the patient’s death. All healthcare providers may encounter bereaved persons, and they need to recognize the signs of grieving and bereavement and offer appropriate support as part of care.
How a person grieves depends on his or her personality, relationship with and attachment to the person who died, and the situation surrounding the loss. Grief reactions can be psychological, emotional, physical, or social. Psychological and emotional reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include difficulty sleeping, appetite changes, somatic complaints, or illness. Social reactions can include feelings about taking care of others in the family, the desire to see or not see family or friends, or the desire to return to work (NCI, 2010b).
DeSpelder and Strickland (1987) identified five characteristics of grief:
Lindemann (1994) described three tasks of what 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 and/or the relationship. Death often awakens emotions of past losses or separations. Bowlby (1961) described three phases of mourning: (1) the urge to recover the lost person, (2) disorganization and despair, and (3) reorganization. These phases originated from the attachment theory of human behavior, which postulates people’s need to attach to others in order to improve survival and reduce risk of harm.
When a loved one has experienced a prolonged dying process, some family members not only grieve the loss of that person but also suffer the loss of their role as caregivers. They may experience a sense of relief that the burden of caregiving has lifted as well as guilt for feeling relief. These are natural reactions, and health professionals should encourage their expression.
Health professionals who work with dying patients and their families may also grieve when a patient dies even though the death was expected. Attending the funeral or memorial service may allow expression of the grief as well as show respect for the family and their loss.
Bereavement options for families include grief support groups (either self-help or facilitated by professionals) and one-on-one counseling by a psychologist, psychiatrist, clinical social worker, or clergyperson. Many online support groups are also available but should be used as an adjunct to in-person therapy rather than as a substitute. If depression occurs in the context of bereavement, medication may be appropriate. No consensus exists among professionals as to the most effective intervention. There are many books and videos available, most of them specifically focused on a particular family role (parents, children, siblings, or spouse).
Hospice professionals who work with the bereaved maintain contact with the family, make home visits, and encourage family members to talk about their feelings, emphasizing that grieving is a painful process that may take years to resolve. It is important to refer to the deceased person by name and to discuss shared memories with the family. Continuing contact with the family offers them an anchor during a difficult time.
The End of Life Physician Research Center notes, “One of the most meaningful acts of kindness [a caregiver] can do for a mourner is to write a letter of condolence” (Menkin & Wolfson, 2005). A good condolence letter offers a tribute to the deceased and comfort to the survivors.
Americans are beginning to admit that death is inevitable and that planning for end-of-life care is essential to ensuring that our preferences are respected when we can no longer care for ourselves. More people are drawing up advance directives, appointing a healthcare proxy/agent, and choosing hospice and palliative care over aggressive treatments. These changes would not have come about without the educational and outreach efforts of nurses, other health professionals, public health agencies, and private foundations.
The ranks of people over 65 continue to swell, and many of them have one or more chronic diseases. Thus, the need for high-quality end-of-life care will only increase. Nine out of 10 Americans will need weeks or months of care at the end of their lives. All healthcare professionals have a role in helping their patients and families understand the range of options available and the benefits of planning for end-of-life care before it is needed.
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