Journal of Gerontological Nursing

A COMMITMENT TO PALLIATIVE CARE: Could it Impact Assisted Suicide?

Mary Kazanowski, RN, PHD(c), OCN

Abstract

Although physiologic changes associated with increasing age need not diminish one's quality of life, the impact of chronic disease on older adults often does (Ferrell, 1991). For example, it is estimated that pain, often due to chronic disease, is experienced by 45% to 80% of clients in chronic care facilities, and that functional limitations secondary to pain occur in many (Ferrell, Ferrell, & Osterweil, 1990). Other precursors to decreased quality of life include agitation, depression, cognitive dysfunction, sleep disturbance, impaired ambulation, and social isolation, all of which may be promoted by pain (Ferrell, 1991; Ferrell, Ferrell, & Osterweil, 1990; Ferrell & Ferrell, 1991).

Recent findings from a study of 9,105 hospitalized adults with a mean age of 65, and one or more lifethreatening illnesses, indicated that patients in major medical centers often underwent life support measures with poor control of pain near death (Support Study Principal Investigators, 1995). This occurred despite the fact that these patients had communicated wishes to avoid resuscitation and aggressive treatment, and that physicians were aware that 52% of these patients had a 6-month survival probability of 52% (actual was 47%). How is it that the United States health care system, considered the most progressive in the world, allows individuals with life-threatening illness to suffer with pain and associated discomforts, even when it is probably their last year (or less) of life?

The purpose of this article is to: 1) discuss the philosophy and nature of hospice and palliative care; 2) describe barriers for older adults obtaining palliative care; 3) describe the relationship of suffering and assisted suicide; 4) describe nursing implications related to this problem; and 5) suggest strategies to facilitate more widespread provision of palliative care for older adults.

THE PHILOSOPHY AND NATURE OF HOSPICE AND PALLIATIVE CARE

Hospice care was developed in the United States in the 1970s, in response to unmet needs of terminally ill patients (National Hospice Organization, 1996). As both a philosophy and a system of care, its priorities are to facilitate quality of life and death with dignity for clients with terminal disease, using a multidisciplinary approach. Although hospice care is recognized as palliative in nature, palliative care doesn't always assume end of life. However, because palliative care was originally meant to guide the care of people with advanced cancer (Walsh, 1992), and because most hospice patients have traditionally had cancer, the lines between the two are blurred both in the literature and in practice. Many hospice agencies divide their services into "supportive care," for clients with advanced disease not necessarily limited to a 6-month prognosis, and "hospice" for clients with a prognosis of 6 months or less. Both groups of patients, however, are cared for by the same interdisciplinary team, and services are similar, if not identical.

Clients admitted to services using their "hospice" insurance benefit will generally require a physician's documented prognosis of 6 months or less, and they may need a primary caregiver who gives written agreement to assume responsibility for the 24-hour-a-day needs of the patient. Depending on the insurance carrier and individual patient needs, changing from one's traditional health care benefits (which usually cover hospitalization and home care) may be beneficial for a client, particularly if it covers all patient medications, which are often not covered by traditional home care/hospital plans (e.g., Medicare). When clients accept this benefit they forfeit their rights to traditional benefits, such as hospitalization, and generally have plans to die in their home. However, clients using the Medicare Hospice benefit may revoke at any point, and return to coverage under traditional Medicare.

BARRIERS TO OBTAINING PALUATIVE CARE FOR OLDER ADULTS…

Although physiologic changes associated with increasing age need not diminish one's quality of life, the impact of chronic disease on older adults often does (Ferrell, 1991). For example, it is estimated that pain, often due to chronic disease, is experienced by 45% to 80% of clients in chronic care facilities, and that functional limitations secondary to pain occur in many (Ferrell, Ferrell, & Osterweil, 1990). Other precursors to decreased quality of life include agitation, depression, cognitive dysfunction, sleep disturbance, impaired ambulation, and social isolation, all of which may be promoted by pain (Ferrell, 1991; Ferrell, Ferrell, & Osterweil, 1990; Ferrell & Ferrell, 1991).

Recent findings from a study of 9,105 hospitalized adults with a mean age of 65, and one or more lifethreatening illnesses, indicated that patients in major medical centers often underwent life support measures with poor control of pain near death (Support Study Principal Investigators, 1995). This occurred despite the fact that these patients had communicated wishes to avoid resuscitation and aggressive treatment, and that physicians were aware that 52% of these patients had a 6-month survival probability of 52% (actual was 47%). How is it that the United States health care system, considered the most progressive in the world, allows individuals with life-threatening illness to suffer with pain and associated discomforts, even when it is probably their last year (or less) of life?

The purpose of this article is to: 1) discuss the philosophy and nature of hospice and palliative care; 2) describe barriers for older adults obtaining palliative care; 3) describe the relationship of suffering and assisted suicide; 4) describe nursing implications related to this problem; and 5) suggest strategies to facilitate more widespread provision of palliative care for older adults.

THE PHILOSOPHY AND NATURE OF HOSPICE AND PALLIATIVE CARE

Hospice care was developed in the United States in the 1970s, in response to unmet needs of terminally ill patients (National Hospice Organization, 1996). As both a philosophy and a system of care, its priorities are to facilitate quality of life and death with dignity for clients with terminal disease, using a multidisciplinary approach. Although hospice care is recognized as palliative in nature, palliative care doesn't always assume end of life. However, because palliative care was originally meant to guide the care of people with advanced cancer (Walsh, 1992), and because most hospice patients have traditionally had cancer, the lines between the two are blurred both in the literature and in practice. Many hospice agencies divide their services into "supportive care," for clients with advanced disease not necessarily limited to a 6-month prognosis, and "hospice" for clients with a prognosis of 6 months or less. Both groups of patients, however, are cared for by the same interdisciplinary team, and services are similar, if not identical.

Clients admitted to services using their "hospice" insurance benefit will generally require a physician's documented prognosis of 6 months or less, and they may need a primary caregiver who gives written agreement to assume responsibility for the 24-hour-a-day needs of the patient. Depending on the insurance carrier and individual patient needs, changing from one's traditional health care benefits (which usually cover hospitalization and home care) may be beneficial for a client, particularly if it covers all patient medications, which are often not covered by traditional home care/hospital plans (e.g., Medicare). When clients accept this benefit they forfeit their rights to traditional benefits, such as hospitalization, and generally have plans to die in their home. However, clients using the Medicare Hospice benefit may revoke at any point, and return to coverage under traditional Medicare.

BARRIERS TO OBTAINING PALUATIVE CARE FOR OLDER ADULTS

Although "appropriate" end-oflife care is available in this country, it is not a universal commodity, and management of pain before and near death remains suboptimal (Management of Cancer Pain Clinical Guideline Panel, 1994). It is estimated that only 14.7% of all deaths in America are of patients receiving hospice services (National Hospice Organization, 1996) and that even when referrals are made, they are often delayed. In their study of survival time for 6,451 elderly patients in hospice, Christakis and Escarce (1996) reported a median survival (length of stay) of 36 days after admission to hospice care, with 16% surviving less than one week, and 15% surviving longer than 6 months. Reasons for deferring or making late referrals vary. Physicians often overestimate patient prognosis (Finn, 1995), physicians may delay referral to preserve the hope of patients and their families (Christakis & Escarce, 1996), and referrals might not be made because patients are in denial, will not sign an advance directive, or are in active treatment for their illness (Finn, 1995). None of these characteristics, however, makes one ineligible for hospice. All that is generally needed for admission is a Üfe-limiting illness and patient consent.

Hospice referrals are also limited because many health care providers are under the impression that only clients with a written prognosis of 6 months or less are appropriate referrals. They are not aware that criteria for admission to a hospice agency often differs from criteria for a hospice benefit, and that many hospices offer supportive care services to clients without a specified prognosis. Many health care providers are also unaware that hospice services are no longer limited to those with end-stage cancer (National Hospice Organization, 1996). Referrals are appropriate for clients with cardiac, pulmonary, liver, human immunodeficiency virus, or dementia which is life-limiting. Guidelines for determining prognosis in selected noncancer diseases are available to assist practitioners in determining which clients with non-oncological terminal illness are likely to have a significantly decreased prognosis (National Hospice Organization, 1996).

A major barrier to broad implementation of palliative care involves how the existing health care system in this country is modeled. Our health care system is built and implemented around a model for curative treatment, which conflicts with a palliative approach to care (Kastenbaum, 1975) and does not allow for easy transition from one model to the other. Despite our knowledge that risks such as multiplicity of chronic disease along with diminished performance status negatively impact one's chances for survival, treatment is often planned and implemented for even high-risk patients with impaired quality of life, because the goal is "cure." Pain or discomfort associated with attaining a "cure," are often not discussed with patients prior to treatment, based on the assumption that cure should remain the goal at all costs. Additionally, pain associated with treatment is often not adequately managed, because of the risk of side effects and /or expectation that some discomfort is tolerable. Thus, the philosophy of expecting and accepting pain as a part of treatment takes hold, and remains a standard component of health care.

What most people do not realize, is that a great number of health care providers in acute and chronic care were not trained in palliative care, were taught very little about pain relief, and what little they were taught might have been inaccurate (Bonica, 1985; McCaffery & Beebe, 1989). It has also been documented that providers poorly assess pain (Grossman, Sheidler, Swedeen, Mucenski, & Piantadosi, 1991; Von Roenn, Cleeland, Gonin, Hatfield, & Pandya, 1993), fear prescribing opioid medications, and do not prioritize the problem of pain (Bonica, 1985; Max, 1990).

Older adults are particularly vulnerable to inadequate treatment of pain because of limited research on the elder pain experience, misconceptions that elders have a high pain tolerance, perceptions that pain may be part of normal aging, difficulty communicating with confused elders, and provider perceptions that elders cannot tolerate opioids (Management of Cancer Pain Guideline Panel, 1994). Crook, Rideout, and Browne (1984) estimated that the incidence of pain in adults older than age 60 is double that of those younger than 60.

Because of physiologic changes of aging, effects of chronic disease, and multidrug therapy for chronic disease, older adults are at greater risk for adverse reactions to nonsteroidal antiinflammatory agents, opioids, local anesthetic infusions, and tricyclic antidepressants. Despite potential risks, elders generally tolerate analgesics well at appropriate doses, and they will also tolerate aggressive therapy when appropriately titrated (Management of Cancer Pain Clinical Guideline Panel, 1994). All too often, however, their pain is undertreated. Although knowledge of current pain management may appear the most important factor for effective control, knowledge alone is insufficient. Recognizing pain as a treatment priority and a true commitment to a philosophy of pain relief are the most essential factors in managing pain. Efforts indicative of such a commitment vary with different situations. Often, symptoms can be readily recognized, treated, and controlled. But at other times, patient symptoms require complex interventions, capable of being developed and implemented only by a team of experts with significant resources for timely implementation, evaluation, and treatment monitoring. Such problems often require nursing, physician, and pharmacist interventions, each of which translate into time and money, precious commodities in this age of downsizing and managed care. Although providers are now forced to consider cost when selecting management strategies, providers should also consider the psychosocial and intrapersonal losses in assessing patients' pain, to more accurately depict the cost of the problem itself.

SUFFERING AS IT RELATES TO ASSISTiD SUICIDE

A significant problem with health care provider misconceptions of hospice/supportive care referral criteria and /or with deferring of referrals is that patients with advanced disease may be deprived expert palliative care services. Because most health care providers have limited knowledge of palliative care, these patients may needlessly suffer a diminished quality of life, often manifested by both physical and emotional pain.

Several studies have documented that uncontrolled pain in patients with cancer or AIDS is an important factor in the suicides of these patients (Breibart, 1987, 1990) and some have documented that persistent pain and terminal illness are the most common reasons for patient requests for euthanasia and physician-assisted suicide (Helig, 1988; van Der Maas, van Delden, Piznenborg, & Looman, 1991). More recently Dr. Kathleen Foley, one of the country's most renowned specialists in pain and palliative care has stated that the patients requesting assisted suicide are those who are most often anticipating pain, not the people actually in pain (Wilkes, 1996). Linda Emanuel, vice president and director of the American Medical Association's Institute for Ethics has stated that "she has never seen a case nor heard of a case where physician assisted suicide was necessary for a patient, and that in the case of requests for assisted suicide, such requests were always dropped when quality care was rendered" (Wilkes, 1996, p. 50). Breibart (1993) elaborates on the discussion of suicide and cancer by stating that the vast majority of cancer or AIDS patients who express suicidal ideation or request a premature death, do so when they are suffering from "unrecognized or untreated psychological disturbances (e.g., depression or confusion) and poorly controlled pain" (p. 50). The fact that many Americans with potential or actual physical and emotional distress due to chronic life-limiting illness, are not referred, appropriately assessed, and provided access to palliative care, accounts for some of the attraction that Americans have for assisted suicide. It is the belief of this author that more open discussion of end-of-life issues, with frank discussion about the pros and cons of acute care, along with improved understanding of palliative care needs to be included in discussions of assisted suicide.

Excellent palliative outcomes for clients with life-limiting disease are available in this country. Pain, a common problem in patients with chronic cancer, can be effectively managed in more than 90% of patients receiving palliative care services (Fainsinger, Miller, Bruera, Hanson, & Maceachern, 1991; Grond, Zech, Schug, Lynch, & Lehmann, 1991; Ingham et al., 1995). For those who cannot achieve relief of pain with traditional analgesics and adjunct medications, more invasive techniques can be used with good effect. Although sedation is generally avoided to allow meaningful interactions, it can and is used if needed to achieve and maintain comfort. Generally less than 5% of patients dying with cancer will require sedation for relief of pain. (Fainsinger, Miller, Bruera, Hanson, & Maceachern, 1991). But people need access to the experts to obtain this relief, and until this improves, pain will continue.

Based on the availability of effective treatments for pain (less than 2,500 hospices nationally), and the relationship between untreated (or unanticipated) pain and suicide, one might conclude that if all patients with cancer, AIDS, and chronic pain were referred to a palliative care setting, pain would be controlled, and fear of pain alleviated, thus eliminating the issue of assisted suicide. Such a conclusion could only be reached if it could be assured that clients with all types of physical and /or emotional pain were being referred, and that once palliative resources were accessed, all would receive optimal care. For this to occur, more health care providers and third party payers need to be sensitive and responsive to the suffering of those with emotional distress related to temiinal illness, and expand the definition of pain to include all types of suffering. Also, once palliative services are accessed, collaboration among providers needs to be maintained throughout the course of the disease. Barriers to effective treatment remain even after palliative care experts are accessed, due in part to our system of care, and a lack of total commitment to palliative care on the part of some providers. For example, when patients are referred to a supportive home care agency, nurses with training in palliative care are often the experts who assess patients in the home, or in long-term care, and they are often the ones who are most knowledgeable about treatment options for control of pain and suffering. To implement plans of care, however, the primary care provider needs to approve and order that which the nurse and or hospice team recommends. When those not committed to palliative care refuse to order medications for symptom control, when agency policy or physician's orders prevent or delay nurses contacting providers to request medication for pain, and when decisions to withhold treatment for pain are accepted as standards of practice, pain continues and often escalates. If pain is to be alleviated, an intense commitment above and beyond that required for many interventions is needed. These uncomfortable situations are often characterized by an imbalance in power between involved parties (e.g., nurse and physician or recent graduate nurse and seasoned nurse). Comrnitrnent, referred to as advocacy (Ferrell, 1996), characterized by caring and fortitude, is needed to impact a system of care desensitized to pain and siiffering. These qualities, however, do not come easily, and they are not characteristic of all providers. The frightening thing is mat bad as it may be that many with pain never get referred to palliative care, even those with referrals are sometimes dependent on the advocacy and communication skills of advocates for their pain to be addressed.

NURSING IMPLICATIONS

The implications of limited access to palliative care for older adults with chronic life-threatening disease are tremendous for nursing. Although not all individuals with chronic lifethreatening disease are elders, the majority are, and elders are likely to have more than one illness, with diminished physiologic reserve, which puts them at greater risk for dying. Nurses spend more time with older adults in the hospital, in the home, in extended care settings, and in community outreach programs than any other health providers, and they are often in a position to better assess patient needs and patient goals (Gordon & Bubley, 1996). According to McCaffery (1994), nurses are also the individuals who often have the greatest impact on management of symptoms such as pain. They are often the ones who assess pain, report it, plan treatment for it, implement the treatment plan by teaching clients and caregivers how to intervene, and evaluate treatment plans. When caring for elders with chronic illness, nurses need know how to access palliative care resources, need to be committed to providing quality care to all clients, and need to be rnindful of the barriers to palliative care discussed in this article. Nurses also need to be mindful that many people in our culture consider discussions related to end-of-life issues negatively, and generally avoid such discussions (Murphy & Price, 1995). With knowledge of physiologic issues, political issues within health care, sociocultural reactions to illness, death, and dying, communication skills, and recognition of the impact of these issues and spiritual beliefs on end-oflife issues, the nurse is often the person best equipped to initiate discussions on end-of-life issues and palliafive care. Discussions on end-of-life issues and palliative care may actually eliminate the need for discussions of assisted suicide.

STRATEGIES TO FACIUTATE MORE WIDESPREAD PROVISION OF PALLIATIVE CARE FOR OLDER ADULTS

Strategies to facilitate more widespread provision of palliative care for older adults include:

1) mandatory continuing medical and nursing education on the problem of inadequate pain management, palliative vs. hospice care, philosophy of palliative care, and issues of death and dying;

2) mandatory agency assessment and outcome evaluation of comfort, by subjective (described by patients or family), and objective measures, including symptoms such as pain, nausea, anxiety, dyspnea, and any other symptom interfering with one's quality of life. Documentation of registered nurse assessment and interventions for any symptom of distress should be required at least once each shift, and goals for comfort should be met.

3) addition or increase in content on pain and symptom control and palliative care content in undergraduate and graduate nursing programs, and schools of medicine;

4) addition or increase in content on communication skills and advocacy training in undergraduate nursing programs and schools of medicine;

5) increase in exposure, and use of palliative care services in acute care, long-term care, and the community, with emphasis on the term "palliative" vs. "hospice;"

6) ongoing implementation of AHCPR guidelines for management of pain;

7) case conferences and ongoing quality assurance projects on quality of life in patients with terminal or debilitating diseases, comparing quality of life in those with palliative care services to those without;

8) research on quality of life for patients and caregivers receiving palliative care comparing quality of life in patients and caregivers with palliative services to those without;

9) encouragement of early referrals to supportive care;

10) publicity campaigns on supportive care, with encouragement for self/ family referrals; and

11) procedures and support for providers at all levels of care to deal with barriers to palliative care in acute care, long-term care, and in the community.

CONCLUSION

Elders are at great risk for dying due to chronic life-threatening disease. Control of pain and suffering should be an expected outcome for all individuals with debilitating disease. Despite the fact that our health care system has the know-how and resources to achieve this goal, many individuals suffer with physical and emotional pain in the months prior to their death, often because they are not referred to palliative care services. Until control of pain and suffering for all individuals is recognized as a priority by all health providers, third party payers, legislators, and all patients, Americans will continue to seek alternatives to a natural death. More widespread knowledge of and commitment to palliative care for all individuals whose disease impacts their quality of life, prior to the terminal phase of disease, would do much to deflate the enthusiasm for assisted suicide.

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10.3928/0098-9134-19970301-14

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