Advertisement
Mayo Clinic Proceedings Home

Maintaining Quality of Life at the End of Life

      Despite the successful growth of the hospice movement during the past 30 years in the United States, almost 85% of Americans continue to die in hospitals or nursing homes. While the benefits of palliative care principles are well established, palliative care interventions remain underused in clinical practice in the settings in which most Americans die. Our premise is that physicians as a group perpetuate end-of-life suffering rather than ease the transition from life to death. We also believe that maintaining quality of life (QOL) at the end of life requires a multidimensional approach orchestrated by physicians drawing on the full range of available physical, psychological, social, and spiritual interventions. This article defines the meaning of QOL at the end of life and then examines the ramifications of failing to attend to QOL concerns in dying patients. It reviews strategies that physicians can use to advance palliative care approaches, thereby reducing terminally ill patients' suffering in the institutions in which most die.
      AIDS (acquired immunodeficiency syndrome), HIV (human immunodeficiency virus), PAS (physician-assisted suicide), QOL (quality of life), WHO (World Health Organization)
      Who is there in all the world who listens to us? Here I am this is me in my nakedness, with my wounds, my secret grief, my despair, my betrayal, my pain which I can't express, my terror, my abandonment. Oh, listen to me for a day, an hour, a moment, lest I expire in my terrible wilderness, my lonely silence. Oh God, is there no one to listen?Senecal
      • Saunders C
      Spiritual pain.
      Seneca graphically described the physical and mental torture endured by a dying person 2000 years ago.
      • Saunders C
      Spiritual pain.
      It is this pain and suffering that are feared most at the end of life. The National Center of Health Statistics estimates that 1% of the US population, almost 2.5 million people, die each year.
      • National Center for Health Statistics
      Births, marriages, divorces and deaths [or 1994. A/or?.
      Before the 1900s, most Americans died at home surrounded by their loved ones. Currently, as many as 60% will die in hospitals, and up to an additional 25% will die in health care-related facilities such as nursing homes. Thus, despite the growth and success of the hospice movement, only 15% of Americans die at home, with or without palliative care services.' This article focuses on the 85% of Americans who die in hospitals and related health care facilities.
      With so many Americans dying in hospitals and other health care facilities during the late 20th century, physicians have had an ever-expanding role in the manner in which people die. Because of concerns in both the professional and the lay communities, this change in our health care system has resulted in a prolongation and impersonalization of the process of dying, rather than an improvement in the quality of living. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) followed up more than 4000 patients from 5 academic medical institutions across the United States, from the time of hospital admission until death.
      • SUPPORT Principle Investigators
      A controlled trial to improve care for seriously ill hospitalized patients: the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) [published correction appears in JAMA. 1996:275: 1232].
      When investigators surveyed family members of the patients, they found that more than half of the patients had suffered from inadequate pain control, a quarter from emotional distress, and almost a quarter from social isolation and feelings of abandonment. Family members perceived that neither physicians nor other health care providers seemed to listen to them or to heed their most important concern, relief of suffering above all else. This study highlights that patients and their families want enhanced quality, rather than simply extended quantity, of life from the health care system as death approaches.
      Too frequently, Americans suffer unnecessarily as they die. This situation does not need to continue. As physicians' we are obligated to focus equally on the quality of our patients' dying as on fending off death at the expense of the quality of life (QOL). With modern medicine emphasizing genetic manipulations, high technology, and cure at all costs, we often neglect what was once the most sacred aspect of being a physician: alleviating suffering. Therefore, we contend that the approach to a person dying in the hospital must change from simply postponing death to focusing medical interventions on maintaining QOL to the end. Three questions challenge us to consider the ways in which we, as physicians, can affect QOL at the end of life. (1) What is QOL and what factors affect QOL as death approaches? (2) What are the ramifications of failing to maintain QOL at the end of life? (3) What can physicians do to advance palliative care services in hospitals or related health care facilities?

      WHAT IS QOL AND WHAT FACTORS AFFECT IT AS DEATH APPROACHES?

      Since 1948, the World Health Organization (WHO) has defined health as being “not only the absence of disease and infirmity, but also the presence of physical, mental, and social well-being.”
      • World I Health Organization
      Since then, spiritual well-being has been added to the first 3 indicators as an important component of overall health. The term quality of life can be defined as the physical, psychological, social, and spiritual domains of health that are influenced by a person's experiences, beliefs, expectations, and perceptions.
      • Testa MA
      • Simonson DC
      Assessment of quality-of-life outcomes.
      The sum of all these factors is an attitude toward health and a belief about one's capacity to cope, which is unique to each individual. Even when several patients have the same medical condition, each will react from a highly personal paradigm of what constitutes health and sickness. Therefore, each patient will experience a unique QOL.
      In the case of sudden death, as in a motor vehicle crash, a massive myocardial infarction, or a stroke, QOL is maintained until the last moments of life. However, when death is not immediate and the individual is faced with “living”while “dying,” QOL may be seriously affected. In the latter situation, the terminal phase may consist of a rapid downhill course or an extended period of existential struggle on the brink of life.
      • Field M
      • Cassel CK
      These prolonged dying experiences often encountered by patients in modern hospitals are the situations most feared by the dying. At their worst, these situations are associated with such profound physical and emotional distress that patients face the disintegration of their soul. In contrast, when appropriate palliative care is provided, this terminal phase can offer the dying person a sense of freedom and personal fulfillment arising from being able to complete life's goals.
      In its terminal stages, life for the dying person may take on new shape and meaning that are not always apparent to those who will survive the patient. Mobility may greatly decrease. Home and work responsibilities may diminish. Friends and family may appear in a new light. What was once considered important now may seem insignificant, while issues once ignored may assume great importance. Byock and Merriman
      • liyock IR
      • Merriman MP
      Measuring quality of life lor patients with terminal illness: the Missoula-YITAS quality of life index.
      summarize these QOL changes in the context of advanced, progressive, incurable illness as “the subjective experience of an individual living with the interpersonal, psychological, and existential or spiritual challenges that accompany the process of physical and functional decline and the knowledge of impending demise.”
      As obvious as they may seem, the following points are frequently forgotten in today's high-tech medical environment. Physical discomfort highly affects QOL for the dying person. In our current hospital-based system, pain is a dying person's predominant physical concern. A reprehensible 70% to 90% of patients with advanced cancer experience significant pain.
      • Ingham JM
      • Foley KM
      Pain and the barriers lo its relief at the end of life: a lesson for improving end of life health care.
      In a survey of physicians regarding knowledge ledge about cancer pain and its treatment, factors predictive of inadequate pain management were (1) a discrepancy between the patient and the physician in judging pain severity, (2) a physician's attribution of pain to a nonmalignant cause, (3) the patient's age older than 70 years, (4) female gender, and (5) the physician's perception that the patient's performance status is inconsistent with significant pain.
      • Cleeland CS
      • Cronin R
      • llatficld AK
      • et al.
      Pain and its treatment in outpatients w ith metastatic cancer.
      Maladaptive attitudes or beliefs at the level of the patient, the physician, and/or society can contribute to inadequate pain management.
      Three areas interfere with physicians' abilities to provide adequate pain control. The first is lack of knowledge ledge about pain management, including a thorough, ongoing assessment of pain and the actual treatment of pain. The second involves misconceptions about the use of opioids for patients with pain. Many physicians have difficulty distinguishing between tolerance that develops in all patients taking opioids for any pronounced length of time and addiction to opioids in which people take the drugs for the “high”feeling rather than for pain relief. Finally, regulation and scrutiny of prescribing controlled substances are barriers to physicians providing opioids for pain management.
      • Field M
      • Cassel CK
      • Cleeland CS
      • Cronin R
      • llatficld AK
      • et al.
      Pain and its treatment in outpatients w ith metastatic cancer.
      Additionally, patients may be reluctant to report pain or take pain medications appropriately to relieve their pain. Patients do not report pain because of a desire to be perceived as “good”patients who do not bother their physicians with complaints of pain. Moreover, patients may fear that pain signifies advanced disease and imminent death. Their concern that the adverse effects from more medical or surgical interventions may be worse than the pain itself may also hinder their reporting their pain. Unfortunately, by protecting their physicians from their physical discomfort, patients suffer alone. Likewise, fear of addiction, fear of unmanageable adverse effects from opioids, and fear of becoming tolerant to the opioids, which would leave them without any hope for pain control, interfere with patients taking pain medications as prescribed.
      • Field M
      • Cassel CK
      • Ingham JM
      • Foley KM
      Pain and the barriers lo its relief at the end of life: a lesson for improving end of life health care.
      Societal factors also have an important role in QOL at the end of life. Societal attitudes influencing both the physician and the patient include ignorance about the differences between legitimate and illegitimate uses of opioids, irrational fear of addiction, and the belief and practice that opioids should be used only when death is imminent.
      • Hill Jr, CS
      The barriers to adequate pain management with opioid analgesics.
      To improve pain management in the dying, all 3 of these biases-patients', physicians', and society's-must be addressed by physicians caring for the terminally ill.
      Somatic pain is not the only factor reducing QOL at the end of life. Factors of cognitive deterioration, emotional turmoil, social isolation, and spiritual emptiness also can influence the extent to which a person suffers. Cassell
      • Cassell LU
      The nature of suffering and the goals of medicine.
      defines suffering as a state of severe distress associated with events “that threaten the intactness of the person as a complex social and psychological entity. … Physicians failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.” To minimize suffering and maximize QOL, physicians must address not only the physical state of their patients but also their mental status, social supports, and spiritual resources.
      Unfortunately, physicians' beliefs, biases, and misconceptions can influence their approach to their patients' mental, emotional, social, and spiritual distress. Physicians frequently assume that cognitively impaired patients no longer find meaning and purpose in living and have diminished psychological well-being proportionate to their cognitive losses. However, a recent study demonstrated that a group of subjects aged 90 to 100 years living in Olmsted County, Minnesota, perceived their QOL to be much greater than did their caregivers.
      • Rummans FA
      • Boeve BF
      • Smith OK
      • et al.
      Depression and quality of life in the oldest old [abstract].
      Of the 116 subjects, 56 were found to be cognitively intact, 12 had mild cognitive impairment, and 48 had dementia. All subjects with or without cognitive impairment perceived their overall QOL to be high. This study suggests that cognitive impairment does not routinely curtail the capacity of the elderly to find continued meaning and enjoyment in life.
      Social and spiritual components also may influence QOL at the end of life. Singer et al
      • Singer PA
      • Martin DK
      • Keiner M
      Quality end-of-life care: patients perspectives.
      identified 5 domains affecting QOL in terminally ill patients with human immunodeficiency virus (HIV), those receiving dialysis, and patients in nursing homes. In support of previous research, pain and other physical symptoms were 2 of the 5 domains found to affect QOL. The remaining 3 factors encompassed social connectedness. Patients reported a desire to retain control over their own end-of-life care decisions as long as mentally possible. They wished to minimize the physical and emotional burden of their dying on loved ones, even as they also sought active involvement of those dear to them to dispel isolation and maintain connection during the dying process. In stark contrast, in most hospitals the current focus on somatic disease fails to incorporate loved ones into active participation in the care of the dying and in fact may even exclude them. Neglect of social and family considerations may prevent the dying from saying goodbye to those close to them, which is central to dying a “good death.” Involving the patient's loved ones in the discussions during hospital rounds or during outpatient appointments helps prepare both the patient and his or her loved ones for what lies ahead. These interactions with the patient's loved ones can help determine the type of assistance that might be the most beneficial and whether the patient's loved ones may need individual services to support them.
      Just as hospitals often ignore social and family considerations in the dying process, they often fail to consider the importance of spiritual concerns. Greisinger et al
      • Greisinger AJ
      • Iorimor RJ
      • Aday IA
      • Winn RJ
      • Baile WF
      Termi-nallv ill cancer patients: their most important concerns.
      found that terminally ill patients with cancer frequently find hope and comfort in their faith while drawing on their beliefs to affirm that their lives have been meaningful and productive. By pressing full speed ahead with intensive treatment until patients are moribund, physicians may prevent the dying from having adequate time for reviewing their lives and reflecting on their deaths. This may interfere with the dying achieving the spiritual closure they often seek.

      WHAT ARE THE RAMIFICATIONS OF FAILING TO MAINTAIN QOL AT THE END OF LIFE?

      Neglect of QOL at the end of life can devastate both the dying patient and the caregivers. For dying patients, deteriorating QOL can lead to premature death, either by passive surrender or active suicide. For caregivers, their physical health may deteriorate and their life span may be shortened.
      In support of the premise that poor QOL can lead to a dying patient's premature death, research has shown that 4 variables commonly associated with QOL predicted the will to live in a group of terminally ill hospitalized cancer patients receiving palliative care.
      • Choehinov IIM
      • Tatarvn D
      • Clinch JJ
      • Dudgeon D
      Will to live in the terminally ill.
      These 4 factors are depression, anxiety, shortness of breath, and a sense of wellbeing. The researchers found that a sense of well-being correlated highly with a will to live throughout the dying process. However, the relative importance of each of the symptoms changed as death approached. Initially, increased anxiety correlated negatively with the will to live. Depression eventually replaced anxiety in prominence, and in the final stages of life, the presence or absence of dyspnea was the strongest factor correlating with the will to live. Psychological determinants clearly dominate in shaping one's will to live early on, while physical concerns take prominence as death approaches.
      • Choehinov IIM
      • Tatarvn D
      • Clinch JJ
      • Dudgeon D
      Will to live in the terminally ill.
      Ignorant of the impact that psychological and physical stressors can have on the will to live, the lay public, medical professionals, family members of dying patients, and terminally ill patients themselves have increasingly supported physician-assisted suicide (PAS) as an option as soon as the desire for death arises. “In both the United States and the Netherlands, ignorance of how to relieve suffering is probably the most frequent reason for doctors complying with or encouraging patients assisted suicide and euthanasia requests.”
      • Mendin IF
      Suicide, assisted suicide, and mental illness.
      Many people, however, are unaware that the factors most commonly associated with patients requesting physician assistance are fears of losing control of mental faculties, becoming a burden to others, and experiencing severe pain.
      • Hack AF
      • Wallace JF
      • Starks HK
      • Pearlman RA
      Physician-assisted suicide and euthanasia in Washington state: patient requests and physician responses.
      By definition, palliative care addresses these concerns.
      More empirical investigation of this area is needed because few studies have directly addressed the desire for death in patients who are terminally ill with cancer or the acquired immunodeficiency syndrome (AIDS). Breitbart et al
      • Breitbart W
      • Rosenfeld IJD
      • Passik SD
      Interest in physician-assisted suicide among ambulatory IIIY-infeeted patients.
      evaluated the effects of pain, physical symptoms, depression, and social support on attitudes toward PAS in a group of ambulatory patients with AIDS. They found that the strongest predictors of interest in PAS were high scores on the measures of psychological distress (depression, hopelessness, suicidal ideation, and overall distress) and the experience with terminal illness in a family member or friend. Other strong predictors were white race, infrequent or lack of attendance at religious services, and perceived low levels of social support. Of particular interest, pain and pain-related functional impairment and the extent of HIV disease were not the strongest indicators of interest in PAS. These findings counter the commonly held belief that pain itself is the primary reason why patients with advanced disease desire to die and often seek PAS. The results of this study further underscore the importance of psychological and social involvement in the integrated care of patients facing death.
      Family members and caregivers are also profoundly affected by deteriorating QOL in the dying person. Schulz and Beach
      • Schulz R
      Beach Sli. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.
      illustrated the manner in which caregiving is a significant risk factor not only for morbidity but also for mortality in those caring for a spouse. Caregivers who reported mental and emotional strain were found to have a 63% higher mortality rate than non-caregiving controls. This study suggests that individual caregivers cannot tend to the dying unaided without significant risk to health and even an enhanced chance of death.
      Likewise, an individual physician cannot be expected to meet all the needs of a dying patient. Demands placed on physicians increase with each advance in medicine. For reimbursement and forensic reasons, physicians must provide more and more documentation. No physician has expertise in all domains of QOL. Physicians who try to do it alone face early burnout. A multidisciplinary team approach to maintaining QOL at the end of life is therefore important for both the patient and the physician. The multidisciplinary team includes palliative care physicians from various backgrounds, such as internal medicine, pediatrics, family medicine, psychiatry, physiatry, and anesthesiology. Psychologists, social workers, chaplains, and nurses are also integral members of the team. Involvement of all team members in a particular patient's care is usually unnecessary, but having all team members available to the consulting palliative care physician ensures the widest possible range of responses to maintaining or improving QOL for the dying person and his or her loved ones.

      WHAT CAN PHYSICIANS DO TO ADVANCE PALLIATIVE CARE SERVICES IN THE HOSPITAL AND RELATED FACILITIES?

      All physicians attending to dying patients in the hospital have important roles in providing palliative care. The concept of palliative care first entered the medical literature in the 16th century to describe efforts to alleviate suffering. Palliative care acknowledges the reality of a time in the illness course when the primary focus changes from preventing death to eliminating obstacles that interfere with QOL for the dying person.
      • Flierl PLI
      Death and dying.
      For patients resorting to heroic treatments, such as transplantation or enrolling in novel curative therapeutic clinical trials when standard treatments have failed, modified palliative care services should be offered at the beginning of their treatment and intensified if their condition deteriorates medically. Like their patients, physicians must make the transition from active treatment and crisis management to palliation to provide the most appropriate care to patients who are facing death despite medicine's best efforts.
      As envisioned and promoted by WHO, palliative care encompasses several principles: (1) affirms life by regarding dying as a normal part of life, (2) neither hastens nor postpones death, (3) provides relief from pain and other distressing symptoms, (4) integrates psychological and spiritual aspects of care, (5) offers support systems to help patients remain physically and mentally active as long as possible, and (6) offers support systems to help caregivers cope during the patient's final days and during the bereavement period.
      • World I Iealth Organization Kxpert Committee
      These tenets affirm the positive aspects of dying and contribute to an enlightened approach to death.
      The WHO guidelines give the palliative care team a framework for delivering compassionate and dignified end-of-life care to the patient and supportive care to the caregivers throughout the dying and bereavement period. Physicians should be appropriate leaders for teams providing consultative services to hospitalized patients facing death, and they should not abdicate these responsibilities to others. A hospital palliative care service might include a physician who may work with a physician extender for practical management issues and consultants in varied disciplines to augment the physical, psychological, social, and spiritual care of the dying patient. Empirical support for this model can be extrapolated from a study of 182 patients dying of cancer in specialized palliative care hospital units.
      • Yiney FF
      • Walker BM
      • Robertson T
      • Filley B
      • Flwan C
      Dying in palliative care units in hospital: a comparison of the quality of life in terminal cancer patients.
      The patients in these palliative care units that were staffed by a multidisciplinary group led by physicians showed higher QOL compared with those dying in hospitals.
      A priority for physicians engaged in palliative care is addressing physical pain and other somatic symptoms. Prescribing appropriate opioid analgesics in adequate doses at frequent intervals is crucial. Nonopioid onopioid analgesic agents used concurrently with opioids may augment pain relief. Other pharmacological interventions using agents such as psychotropics and nonpharmacological interventions such as psychotherapy and relaxation techniques can help mitigate pain if comorbid depression or anxiety is intensifying the suffering of the patient.
      • Rummans TA
      Nonopioid agents for treatment of acute and sub-acute pain.
      Additional common physical problems contributing to suffering include gastrointestinal symptoms such as nausea and vomiting, pulmonary symptoms such as shortness of breath, and neurovegetative symptoms such as insomnia and anorexia. Appropriate pharmacological and nonpharmacological interventions can address these symptoms. Cognitive and behavioral changes, particularly the waxing and waning level of consciousness in delirium, can distress both patients and caregivers. Management of delirium with antipsychotics and anxiolytics can alleviate or minimize the associated behavioral disturbances. Palliative care teams must evaluate each situation and use creativity in tailoring interventions designed to address less common causes of discomfort.
      Dying patients face psychological adjustments that can develop into clinical depressive or anxiety disorders. A history of depressive or anxiety disorders can predispose a patient to developing psychiatric problems. Current biological stresses from the individual's illness, including both the disease and the treatments, may trigger biological depressive or anxiety disorders. Additional factors such as individual coping skills and support systems can affect whether the patient may experience serious psychiatric problems.
      Despite implementing a comprehensive multidisciplinary intervention, patients may still develop pronounced depression and anxiety. One study assessing the prevalence of psychiatric problems in the medically ill found that 50% of patients developed depressive symptoms, with or without anxiety.
      • Derogatis DR
      • Morrow OR
      • Fctting J
      • et al.
      The prevalence of psychiatric disorders among cancer patients.
      Depressive and anxiety disorders must be recognized as psychiatric disturbances and not superficially dismissed as “failures to cope.” Of note, in a study of 159 patients with terminal cancer, health care providers and patients agreed on the patient's level of physical distress but disagreed on psychosocial symptoms.
      • lirunelli C
      • Costantini M
      • Di Giulio P
      • et al.
      Quality-of-life evaluation: when do terminal cancer patients and health-care providers agree?.
      Interven­tions combining psychotherapy and pharmacotherapy can benefit the dying, although empirical data on the impact of these interventions in this population are sparse.
      For the dying person, continued social connectedness is a critical aspect of QOL. Sustaining this social connectedness involves attending to relationships with a spouse, children, friends, coworkers, and society. Illness changes people's perception of their ability to maintain these roles. They may fear loss of relationships, decreased self-esteem, and abandonment. However, physicians coordinating care can encourage family members and friends to provide the extent of care that the dying person wishes. Physicians can offer additional connectedness by maintaining the physician-patient relationship and not abandoning the patient at the end of life.
      The “technology”of connecting with patients is not complicated, but the importance of the physician-patient relationship can be forgotten in the hectic pace of hospital rounds. Physicians must recall and focus on the impact that “caring”has on a patient's QOL. Physicians can accomplish this by taking the time to sit rather than stand when visiting the patient, even if only briefly. They can resist the urge to check their watches. They can listen to patients talk about their illness and resist feeling compelled to offer interventions other than their undivided attention and concern. Physicians can make special efforts to accept where patients are in the dying process rather than offering unwelcome, superficial, or judgmental comments about where the physicians believe patients should be. Physicians also must know and attend to their personal, physical, emotional, and spiritual limitations in order not to impose their biases on their dying patients.
      Spiritual care is an essential part of palliative care. The physician's role in this process includes assisting in the maintenance of hope. Hope, “an inner power that facilitates transcendence of the present situation and moves people toward a new awareness and enrichment of being,” is at the core of spirituality and is the essence of palliative care.
      • Ilerth K
      Fostering hope in terminally-ill people.
      Physicians can optimally address patients' spiritual needs without abandoning them physically or emotionally. However, the primary physician is not the only source of spiritual support, and referrals to other physicians such as psychiatrists or to psychologists, nurses, social workers, or chaplains should be considered to address unmet needs when the patient requests more than the physician can provide.
      While minimal empirical data exist on the impact of interventions on maintaining or improving QOL in the dying patient in the hospital, outpatient hospice data may help identify approaches that are successful in addressing concerns of patients and their caregivers. For 3 years, the Mayo Hospice Program (which consists of a multidisciplinary group of physicians including psychiatrists, nurses, chaplains, social workers, and volunteers participating in inhome care) has systematically studied the experience of the dying from the points of view of the patient, the nonmedical caregiver, and the hospice staff.
      • Bretscher M
      • Rummans T
      • Sloan J
      • et al.
      Quality of life in hospice patients: a pilot study.
      Four main domains of QOL, including the physical, emotional, cognitive, and spiritual, are assessed every 2 weeks from the time the person enters the hospice until his or her death. Encouragingly, findings to date suggest that many hospice patients report a relatively stable QOL despite progressive deterioration in physical status. Perhaps some patients have come to terms with their death before entering the hospice program. A more plausible hypothesis is that the palliative care patients receive in hospice addresses lingering physical, psychological, social, and spiritual issues that contribute to their suffering.
      We believe that the principles that have been so successful in improving QOL for hospice patients must be adopted in hospitals and related facilities such as nursing homes so that suffering can be relieved where the vast majority of Americans continue to die. With this approach, hospitalized patients do not need to die in the tortuous way Seneca described, and QOL can be maintained until the last moment of life.

      Acknowledgments

      Additional members of the Quality of Life Working Group are Barbara K. Bruce, PhD, Kemuel L. Philbrick, MD, Jarrett W. Richardson, MD, and Jeffrey D. Rome, MD, Department of Psychiatry and Psychology; Jan C. Buckner, MD, Richard M. Goldberg, MD, Lynn C. Hartmann, MD, Judith S. Kaur, MD, Charles L. Loprinzi, MD, James A. Martensen, Jr, MD, Timothy J. Moynihan, MD, and Michael J. O'Connell, MD, Department of Oncology; Marlene H. Frost, PhD, Department of Nursing; Gail L. Gamble, MD, Department of Physical Medicine and Rehabilitation; Christopher C. Hook, MD, Department of Internal Medicine; Mary E. Johnson, Chaplain Services; Jeff A. Sloan, PhD, Section of Biostatistics; and Gilbert Y. Wong, MD, Department of Anesthesiology.

      REFERENCES

        • Saunders C
        Spiritual pain.
        J Palliat Cale. 1988; 4: 29-32
        • National Center for Health Statistics
        Births, marriages, divorces and deaths [or 1994. A/or?.
        Pital Stat Rep. 1997; 42: 1-23
        • SUPPORT Principle Investigators
        A controlled trial to improve care for seriously ill hospitalized patients: the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) [published correction appears in JAMA. 1996:275: 1232].
        JAMA. 1995; 274: 1591-1598
        • World I Health Organization
        Handbook of Basic Documents. 5lh ed. Palais des Nations, Geneva. Switzerland1952: 3-20
        • Testa MA
        • Simonson DC
        Assessment of quality-of-life outcomes.
        N Engl J Med. 1996; 334: 835-840
        • Field M
        • Cassel CK
        Approaching Death: Improving Care at the End of Life. National Aeademv Press, Washington, DC1997: 28-30 (128-134.)
        • liyock IR
        • Merriman MP
        Measuring quality of life lor patients with terminal illness: the Missoula-YITAS quality of life index.
        Palliat Med. 1998; 12: 231-244
        • Ingham JM
        • Foley KM
        Pain and the barriers lo its relief at the end of life: a lesson for improving end of life health care.
        Ilosp J. 1998; 13: 89-100
        • Cleeland CS
        • Cronin R
        • llatficld AK
        • et al.
        Pain and its treatment in outpatients w ith metastatic cancer.
        SEngl J Med. 1994; 330: 592-596
        • Hill Jr, CS
        The barriers to adequate pain management with opioid analgesics.
        Semin Oncol. 1993; 20: l-5
        • Cassell LU
        The nature of suffering and the goals of medicine.
        N Engl J Med. 1982; 306: 639-645
        • Rummans FA
        • Boeve BF
        • Smith OK
        • et al.
        Depression and quality of life in the oldest old [abstract].
        Psychosomatics. 2000; 41 (Abstract 33.): 172
        • Singer PA
        • Martin DK
        • Keiner M
        Quality end-of-life care: patients perspectives.
        JAMA. 1999; 281: 163-168
        • Greisinger AJ
        • Iorimor RJ
        • Aday IA
        • Winn RJ
        • Baile WF
        Termi-nallv ill cancer patients: their most important concerns.
        Cancer Pra'ct. 1997; 5: 147-154
        • Choehinov IIM
        • Tatarvn D
        • Clinch JJ
        • Dudgeon D
        Will to live in the terminally ill.
        Lancet. 1999; 354: 816-819
        • Mendin IF
        Suicide, assisted suicide, and mental illness.
        CSS Spec-trums. 2000; 5: 41-45
        • Hack AF
        • Wallace JF
        • Starks HK
        • Pearlman RA
        Physician-assisted suicide and euthanasia in Washington state: patient requests and physician responses.
        JAMA. 1996; 275: 919-925
        • Breitbart W
        • Rosenfeld IJD
        • Passik SD
        Interest in physician-assisted suicide among ambulatory IIIY-infeeted patients.
        AmJ Psy-chiatry. 1996; 153: 238-242
        • Schulz R
        Beach Sli. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.
        JAMA. 1999; 282: 2215-2219
        • Flierl PLI
        Death and dying.
        Ann InternMed. 1982; 97: 767-771
        • World I Iealth Organization Kxpert Committee
        Lancer Pain Relief and Palliative Care. World Health Organization, Geneva. Switzerland1990 (Technical Report Scries no. 804.)
        • Yiney FF
        • Walker BM
        • Robertson T
        • Filley B
        • Flwan C
        Dying in palliative care units in hospital: a comparison of the quality of life in terminal cancer patients.
        Sonsult Clin Psycho. 1994; 62: 157-164
        • Rummans TA
        Nonopioid agents for treatment of acute and sub-acute pain.
        Mayo ClinProc. 1994; 69: 481-490
        • Derogatis DR
        • Morrow OR
        • Fctting J
        • et al.
        The prevalence of psychiatric disorders among cancer patients.
        JAMA. 1983; 249: 751-757
        • lirunelli C
        • Costantini M
        • Di Giulio P
        • et al.
        Quality-of-life evaluation: when do terminal cancer patients and health-care providers agree?.
        J Pain Symptom Lanage. 1998; 15: 151-158
        • Ilerth K
        Fostering hope in terminally-ill people.
        J Adv Surs. 1990; 15: 1250-1259
        • Bretscher M
        • Rummans T
        • Sloan J
        • et al.
        Quality of life in hospice patients: a pilot study.
        Psychosomatics. 1999; 40: 309-313