The promise of a good death

Abstract

For more than three decades, interest in improving the care of dying patients has progressed from being the concern of a few health-care professionals to being a widespread social concern. More than 35 years ago Saunders founded the hospice movement in Britain.1Saunders C Care of the dying. Macmillan, London1959Google Scholar Nearly 30 years ago Kubler-Ross published On Death and Dying2Kubler-Ross E On death and dying. Tavistock, London1970Google Scholar and the "living will" was first proposed.3Kutner L Due process of euthanasia: the living will—a proposal.Indiana Law J. 1969; 44: 539-554Google Scholar More than 20 years ago the Quinlan decision4In re Quinlan 70 NJ 10, 1976.Google Scholar made clear that it was legal and ethical to terminate life-sustaining treatments in the USA, and California became the first state to enact a living-will statute. 15 years ago US states began recognising the legal authority of families to decide whether to terminate life-sustaining care, and the Medicare system, which provides health insurance for the elderly and disabled in the USA, began covering the cost of hospice care. 8 years ago the US Supreme Court ruled on the Cruzan case,5Cruzan v Director, Missouri Department of Health 110 S. Ct. 2841, 1990.Google Scholar its first in the end-of-life area, indicating that there was a constitutional right to refuse life-sustaining treatments. More recently, there has been intense interest in euthanasia and physician-assisted suicide in developed countries,6Emanuel EJ Euthanasia: historical, ethical and empiric perspective.Arch Intern Med. 1994; 154: 1890-1901Crossref PubMed Google Scholar, 7Kinsella TD Tate PA Attitudes among NHS doctors to requests for euthanasia.BMJ. 1994; 308: 1332-1334Crossref PubMed Scopus (129) Google Scholar, 8Van der Maas PJ van der Wal G Haverkate I et al.Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995.N Engl J Med. 1996; 335: 1691-1705Crossref PubMed Google Scholar studies of the care of dying patients, evaluations of interventions to improve such care,9Association for Palliative Medicine and the Royal College of General Practitioners Palliative medicine curriculum. Association for Palliative Medicine for Great Britain and Ireland, Southampton1993Google Scholar and efforts to improve the training of physicians in this area.10American Board of Internal Medicine Caring for the dying: identification and promotion of physician competency. American Board of Internal Medicine, Philadelphia1996Google Scholar The media, which used to shun reporting on death and dying as too negative, now deem them suitable for news and features.Despite this attention, a "good death" remains more a hope than standard medical practice for all patients. In part, this is because the contemporary "reexamin[ation] of how we approach dying and death" coexists with a persistent social attitude that denies death.11Aries P The hour of our death. Alfred A Knopf, New York1981Google Scholar, 12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar Youth is celebrated as the ideal; longevity is desired, and remains a primary standard for evaluating health-care systems; and when a friend or relative is dying people commonly avoid the person feeling that "I don't know what to do or say". The focus has been on avoiding problems and stopping bad interventions rather than on a positive ideal of a good death. Thus we face a paradox: increasing concern about death and dying, tremendous technical capacities to relieve symptoms and improve care, and persistent suffering of dying patients, all combined with the continued denial of death. This makes it opportune to explore how to fulfil the promise of a good death.Because of the lengthening life-span, lower childhood mortality, smaller families, and the increaseing use of supportive and other medical interventions, only healthcare professionals today develop sufficient experience and familiarity with death and dying. Hence, the promise of a good death is more appropriately a topic demanding the health professions' attention than it might have been a century ago. For this promise, what is the period that concerns us? While the hours or days before death are important, the focus should be the weeks and months before death when symptoms and needs increase, and interventions can have a significant impact on the well-being of patients and families. Thus, a good death should mean making the last weeks—not minutes—of life valuable and meaningful. This is more appropriate for causes of death that have a prodrome before dying, such as cancer, congestive heart failure, and COPD, which are estimated to cause 50-70% of deaths, than for sudden deaths caused by stroke, myocardial infarctions, accidents, and suicides (table 1).Table 1Epidemiology of deathCauses of death (ordered by cause)Number of deaths in USARates per 100 000 population USATotalOver 65 years of ageAll causes2312·11694·3880·0Heart disease737·6615·4280·7Cancer538·5381·1204·9Stroke158·0138·360·1COPD102·988·539·2Accidents93·329·1*Among those over 65 accidents are the 7th leading cause of death.35·5Pneumonia and influenza82·974·331·6Diabetes59·244·522·6HIV43·1NA†HIV. suicide, and chronic liver diseases are not among the 10 leading causes of mortality among the over 65. In this age group, 8th leading cause of death is Alzheimer's disease, 9th is renal failure, and 10th is septicaemia. COPD=chronic obstructive pulmonary disease, NA=not applicable.16·4Suicide31·3NA†HIV. suicide, and chronic liver diseases are not among the 10 leading causes of mortality among the over 65. In this age group, 8th leading cause of death is Alzheimer's disease, 9th is renal failure, and 10th is septicaemia. COPD=chronic obstructive pulmonary disease, NA=not applicable.11·9Chronic liver disease and cirrhosis25·2NA†HIV. suicide, and chronic liver diseases are not among the 10 leading causes of mortality among the over 65. In this age group, 8th leading cause of death is Alzheimer's disease, 9th is renal failure, and 10th is septicaemia. COPD=chronic obstructive pulmonary disease, NA=not applicable.9·6* Among those over 65 accidents are the 7th leading cause of death.† HIV. suicide, and chronic liver diseases are not among the 10 leading causes of mortality among the over 65. In this age group, 8th leading cause of death is Alzheimer's disease, 9th is renal failure, and 10th is septicaemia. COPD=chronic obstructive pulmonary disease, NA=not applicable. Open table in a new tab Framework for a good deathMuch of the effort to improve care for the dying, especially in the USA, has concentrated on using technology to relieve symptoms and avoiding invasions during the dying process.4In re Quinlan 70 NJ 10, 1976.Google Scholar, 5Cruzan v Director, Missouri Department of Health 110 S. Ct. 2841, 1990.Google Scholar, 12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar Those two goals are essential, but they do not encompass the ideal of a good death. Indeed, when surveyed, the concerns of patients seem to be as much, if not more, about loss of dignity, being dependent, not being a burden, and loss of control, than about physical or psychological symptoms.13Van der Maas PJ van Delden JJM Lijnenborg L Looman CWN Euthanasia and other medical decisions concerning the end of life.Lancet. 1991; 338: 669-674Summary PubMed Scopus (466) Google Scholar, 14Back AI Wallace JI Starks HE Pearlman RA Physician-assisted suicide and euthanasia in Washington state.JAMA. 1996; 275: 919-925Crossref PubMed Google ScholarWhat constitutes a good death? The Institute of Medicine's definition is: "[A] decent or good death is one that is: free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards".12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar One commentator has argued that "the conceptual models…of how death should be approached and what constitutes suffering are overly simplistic and woefully inadequate at the bedside".15Quill TE A midwife through the dying process: stories of healing and hard choices at the end of life.in: Johns Hopkins Press, Baltimore1996: 202Google Scholar Indeed, the problem with such definitions is their vagueness and difficulty in translation into practical guidance. In the figure we provide a framework for understanding and evaluating a good death developed as part of the Commonwealth-Cummings project on the quality of care at the end of life.This framework includes the evolving insights in the end-of-life field and characterises dying as a multidimensional experience.1Saunders C Care of the dying. Macmillan, London1959Google Scholar, 16Stoddard S The hospice movement: a better way of caring for the dying. Vintage, New York1974Google Scholar, 17Cohen SR Mount BMM Strobel MG Bui F The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability.Palliat Med. 1995; 9: 207-219Crossref PubMed Scopus (544) Google Scholar It synthesises the dying experience as a process with four critical components: 1) the fixed characteristics of the patient; 2) the modifiable dimensions of the patient's experience, or elements that may respond to events or interventions; 3) the potential interventions available to family, friends, health-care providers, and others; and 4) the overall outcome. The framework can help in the improvements of care for dying patients in three ways.First, the framework emphasises the multifaceted character of the experience of dying patients, expanding considerations beyond physical and psychological symptoms to include: economic demands and caregiving needs, social relationships, hopes and expectations, and spiritual and existential beliefs. Each of these dimensions incorporates a vast range of specific concerns that are illustrated by the examples listed. However, the dimensions are not separate. There are psychological components to many physical symptoms and other difficulties can intensify and be manifested as physical ailments. Patients who are depressed or are experiencing existential meaninglessness can have a lower threshold for pain; patients who have spiritual fulfilment or good mechanisms to handle caregiving needs may report less bothersome symptoms. The purpose of such a comprehensive list of modifiable dimensions of patients' experience is to help clinicians to systematically evaluate and optimise the care of the dying patient in all areas.Second, delineating the five interventions emphasises that dying is not just a medical experience and the patient's full social network can significantly influence their experience. While health-care providers and institutions have a major responsibility for improving the care of dying patients in medical and non-medical aspects, others, from family and friends to religious mentors and community groups, do also. The framework delineates potential interventions where appropriate; not all interventions will be appropriate in all cases. For many patients continuing with their personal physician will be preferable to receiving care from a multidisciplinary palliative-care team. For other patients a good death may mean forsaking as many palliative-care interventions as possible and being with their family. Furthermore, the framework emphasises that caring for dying patients occurs within an institutional system that can significantly effect the quality of the dying experience by development of specialised care teams and facilities, institutional affiliations, and reimbursement policies.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google ScholarThird, the framework outlines a systematic mechanism to implement and evaluate two elusive concepts that are fundamental to improving care of dying patients: a good death, and suffering. Saunders used the term "total pain" to denote suffering in four dimensions. Building on her idea, this framework suggests a quality-of-life scale appropriate for dying patients would be a "death-experience scale" that did not only assess the treatment of physical symptoms18Portenoy RK Thaler HT Kornblith AB et al.The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.Eur J Cancer. 1994; 30: 1326-1336Summary Full Text PDF Scopus (1154) Google Scholar, 19Bruera E Kuehn N Miller MJ Selmser P MacMillan K The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients.J Palliat Care. 1991; 7: 6-9PubMed Google Scholar but also assessed the patient's condition in each of the six modifiable characteristics.17Cohen SR Mount BMM Strobel MG Bui F The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability.Palliat Med. 1995; 9: 207-219Crossref PubMed Scopus (544) Google Scholar In addition, the framework suggests a mechanism to define and measure suffering. Suffering constitutes either poor conditions and outcomes in all, or nearly all, of the six modifiable dimensions of patients' experience or overwhelmingly bad experience in one or two of the modifiable dimensions.20Cassel E The nature of suffering and the goals of medicine. Oxford University Press, New York1991Google Scholar, 21Mount BM Hamilton P When palliative care fails to control suffering.J Palliat Care. 1994; 1: 24-26Google ScholarCurrent knowledge about a good deathTo achieve a good death means using—or deciding not to use—relevant interventions. Thus we need to identify what we know about the frequency, assessment, and importance of each modifiable dimension of the patient's experience and the use and effectiveness of the various interventions.Physical symptomsOf all the aspects of dying, pain is the most studied. Validated and reliable pain-assessment measures exist.17Cohen SR Mount BMM Strobel MG Bui F The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability.Palliat Med. 1995; 9: 207-219Crossref PubMed Scopus (544) Google Scholar, 18Portenoy RK Thaler HT Kornblith AB et al.The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.Eur J Cancer. 1994; 30: 1326-1336Summary Full Text PDF Scopus (1154) Google Scholar, 19Bruera E Kuehn N Miller MJ Selmser P MacMillan K The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients.J Palliat Care. 1991; 7: 6-9PubMed Google Scholar, 22Cleeland CS Measurement of pain by subjective report.in: Advances in pain research and therapy. Vol. 11. Raven Press, New York1989: 391-403Google Scholar Extensive pharmacological, neuroablative, and anaesthetic treatments, as well as detailed treatment guidelines, should ensure adequate pain relief in 95% of cases.23Agency for Health Care Policy and Research Clinical practice guideline number 9: management of cancer pain. AHCPR Publication, Rockville1994Google Scholar, 24World Health Organization Cancer pain relief and palliative care. WHO, Geneva1990Google Scholar, 25Foley KM The treatment of pain.N Engl J Med. 1985; 313: 84-95Crossref PubMed Scopus (810) Google Scholar Nevertheless, among dying patients, pain remains inadequately treated, with a reported frequency ranging from 20% to over 70%.18Portenoy RK Thaler HT Kornblith AB et al.The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.Eur J Cancer. 1994; 30: 1326-1336Summary Full Text PDF Scopus (1154) Google ScholarFor some pain syndromes, such as neuropathic and visceral pain, existing interventions are inadequate and new treatments need to be found. Providing adequate pain-control to the vast majority of patients requires better implementation of existing therapies through training of clinicians, use (not just development) of guidelines, education of patients and families, redesign of health-care systems, and changes in regulations.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar, 24World Health Organization Cancer pain relief and palliative care. WHO, Geneva1990Google Scholar, 26Von Roenn JH Cleeland CS Gonnin R et al.Physician attitudes and practice in cancer pain management: a survey from the Eastern Cooperative Oncology Group.Ann Intern Med. 1993; 119: 121-126Crossref PubMed Scopus (719) Google ScholarWhat we know about other physical symptoms is considerably less than our understanding of pain.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar Besides pain, the most common physical symptoms at the end of life are fatigue, drowsiness and insomnia, dyspnoea, and anorexia.17Cohen SR Mount BMM Strobel MG Bui F The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability.Palliat Med. 1995; 9: 207-219Crossref PubMed Scopus (544) Google Scholar, 18Portenoy RK Thaler HT Kornblith AB et al.The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.Eur J Cancer. 1994; 30: 1326-1336Summary Full Text PDF Scopus (1154) Google Scholar, 19Bruera E Kuehn N Miller MJ Selmser P MacMillan K The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients.J Palliat Care. 1991; 7: 6-9PubMed Google Scholar, 27Seal C Cartwright A The year before death. Ashgate Publishing, Aldershot1994Google Scholar, 28Portenoy RK Thaler HT Kornblith AB et al.Symptom prevalence, characteristics and distress in a cancer population.Qual Life Res. 1994; 3: 183-189Crossref PubMed Scopus (519) Google Scholar, 29Donnelly S Walsh D The symptoms of advanced cancer.Semin Oncol. 1995; 22: S67-S72PubMed Google Scholar For many of these symptoms there are validated assessment tools.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar, 17Cohen SR Mount BMM Strobel MG Bui F The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability.Palliat Med. 1995; 9: 207-219Crossref PubMed Scopus (544) Google Scholar, 18Portenoy RK Thaler HT Kornblith AB et al.The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.Eur J Cancer. 1994; 30: 1326-1336Summary Full Text PDF Scopus (1154) Google Scholar, 19Bruera E Kuehn N Miller MJ Selmser P MacMillan K The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients.J Palliat Care. 1991; 7: 6-9PubMed Google Scholar Whilst there are effective interventions for some of these physical symptoms (eg, nausea and vomiting), for others (eg, fatigue), treatments are less effective. Additional research is necessary to develop therapies for some physical symptoms; for others, training is needed to improve use of assessment instruments and available treatments, and improved delivery services are necessary.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google ScholarPsychological and cognitive symptomsLess is known about psychological symptoms than about pain and most physical symptoms.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar, 30Breitbart W Bruera E Chochinov H Lynch M Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer.J Pain Symptom Manage. 1995; 10: 131-141Summary Full Text PDF PubMed Scopus (195) Google Scholar Whilst there are controversies about the appropriate clinical criteria for some psychological symptoms, such symptoms are both common and a major problem for dying patients.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar, 17Cohen SR Mount BMM Strobel MG Bui F The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability.Palliat Med. 1995; 9: 207-219Crossref PubMed Scopus (544) Google Scholar, 18Portenoy RK Thaler HT Kornblith AB et al.The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.Eur J Cancer. 1994; 30: 1326-1336Summary Full Text PDF Scopus (1154) Google Scholar, 19Bruera E Kuehn N Miller MJ Selmser P MacMillan K The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients.J Palliat Care. 1991; 7: 6-9PubMed Google Scholar, 27Seal C Cartwright A The year before death. Ashgate Publishing, Aldershot1994Google Scholar, 28Portenoy RK Thaler HT Kornblith AB et al.Symptom prevalence, characteristics and distress in a cancer population.Qual Life Res. 1994; 3: 183-189Crossref PubMed Scopus (519) Google Scholar, 29Donnelly S Walsh D The symptoms of advanced cancer.Semin Oncol. 1995; 22: S67-S72PubMed Google Scholar More than a third of dying patients may be depressed, and more than half of patients with advanced cancer feel sad, anxious, and irritable.27Seal C Cartwright A The year before death. Ashgate Publishing, Aldershot1994Google Scholar, 28Portenoy RK Thaler HT Kornblith AB et al.Symptom prevalence, characteristics and distress in a cancer population.Qual Life Res. 1994; 3: 183-189Crossref PubMed Scopus (519) Google Scholar, 29Donnelly S Walsh D The symptoms of advanced cancer.Semin Oncol. 1995; 22: S67-S72PubMed Google Scholar, 30Breitbart W Bruera E Chochinov H Lynch M Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer.J Pain Symptom Manage. 1995; 10: 131-141Summary Full Text PDF PubMed Scopus (195) Google Scholar In addition, suicide rates are higher for the terminally ill than in the normal population, and are thought to be associated in part with greater degrees of depression, psychological distress, and inadequate pain control.31Allebeck P Bolund C Ringback G Increased suicide rate in cancer patients: a cohort study based on the Swedish cancer register.J Clin Epidemiol. 1989; 42: 611-616Summary Full Text PDF PubMed Scopus (125) Google ScholarThere are validated assessment instruments for many of these symptoms, especially depression, that are relevant to dying patients.17Cohen SR Mount BMM Strobel MG Bui F The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced disease: a preliminary study of validity and acceptability.Palliat Med. 1995; 9: 207-219Crossref PubMed Scopus (544) Google Scholar, 18Portenoy RK Thaler HT Kornblith AB et al.The Memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.Eur J Cancer. 1994; 30: 1326-1336Summary Full Text PDF Scopus (1154) Google Scholar, 19Bruera E Kuehn N Miller MJ Selmser P MacMillan K The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients.J Palliat Care. 1991; 7: 6-9PubMed Google Scholar, 32Berwick DM Murphy JM Goldman PA et al.Performance of a five-item mental health screening test.Med Care. 1991; 29: 169-176Crossref PubMed Scopus (1170) Google Scholar, 33Kohout TJ Berkman LF Evans DA Cornoni-Huntley J Two shorter forms of the CES-D depression symptoms index.J Aging Health. 1993; 5: 179-193Crossref PubMed Scopus (1619) Google Scholar Many assessment instruments for psychological symptoms may be inappropriate for dying patients because they rely on evaluating changes in vegetative functions, such as weight loss and disruption in sleeping patterns, that are frequently consequences of terminal illness and not indicators of distress. Historically, clinicians have underdiagnosed psychological symptoms.34Schulberg HC Saul M McClelland M Ganguli M Christy W Frank R Assessing depression in primary medical and psychiatric practices.Arch Gen Psychiatry. 1985; 42: 1164-1170Crossref PubMed Scopus (454) Google Scholar This may be due to a general uneasiness of non-specialists with psychological illnesses as well as a common but misplaced view that depression is "normal" for dying patients. As with many physical symptoms, research would be helpful in developing additional understanding of the prevalence and causes of these symptoms and to develop additional interventions. Nevertheless, through approspriate use of psychological counselling, psychostimulants, antidepressants, anxiolytics, and other drugs, the psychological symptoms of many dying patients should be manageable.30Breitbart W Bruera E Chochinov H Lynch M Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer.J Pain Symptom Manage. 1995; 10: 131-141Summary Full Text PDF PubMed Scopus (195) Google ScholarEconomic demands and caregiving needsThe limited empiric data suggest that caring for dying patients imposes significant economic demands and caregiving burdens on families. About a third of American families experience a significant loss of income and savings because of a terminally ill family member.35Siegel K Raveis VH Houts P Mor V Caregiver burden and unmet patient needs.Cancer. 1991; 68: 1131-1140Crossref PubMed Scopus (156) Google Scholar, 36Covinsky KE Goldman L Cook EF et al.The impact of serious illness on patients' families.JAMA. 1994; 272: 1839-1844Crossref PubMed Google Scholar Dying patients often require substantial nursing and personal care at home as well as home-making services.12Institute of Medicine Approaching death: improving care at the end of life. National Academy Press, Washington, DC1997Google Scholar, 37Brook DB, Foley DJ. Demography and epidemiology of dying in the U.S., with emphasis on deaths of older persons. Hospice J (in press).Google Scholar One report found that among terminal cancer patients, 42% required assistance with personal care and home-making and 10% needed assistance with transportation.38Houts PS Yasko JM Harvey HA et al.Unmet needs of persons with cancer in Pennsylvania during the period of terminal care.Cancer. 1988; 62: 627-634Crossref PubMed Scopus (94) Google Scholar Family members, usually wives and other female relatives, often provide care to meet these needs, which frequently require major life-changes, including leaving work.36Covinsky KE Goldman L Cook EF et al.The impact of serious illness on patients' families.JAMA. 1994; 272: 1839-1844Crossref PubMed Google Scholar One of the major limitations of existing data is that they do not explain "the mechanism of these [economic and caregiving] burdens", making it difficult for providers to effectively address them.36Covinsky KE Goldman L Cook EF et al.The impact of serious illness on patients' families.JAMA. 1994; 272: 1839-1844Crossref PubMed Google Scholar Preliminary data suggest that severe physical and psychological symptoms create high caregiving needs which, in turn, create significant economic demands on patients and families39Emanuel EJ Fairclough D Slutsman J Omundsen E Emanuel LL Predictors and outcomes of significant caregiving needs and economic burdens among terminally ill oncology patients: results from the Commonwealth-Cummings Project.J Clin Oncol. 1998; 17 (abstr 4229): 1628Google Scholar Interestingly, understanding of how these economic demands and caregiving needs affect the patient's overall dying experience is lacking, although the bias is that these demands and needs would make it worse. However, a patient's caregiving needs seem to affect adversely the patient's caregiver and family, causing depression and other medical problems.39Emanuel EJ Fairclough D Slutsman J Omundsen E Emanuel LL Predictors and outcomes of significant caregiving needs and economic burdens among terminally ill oncology patients: results from the Commonwealth-Cummings Project.J Clin Oncol. 1998; 17 (abstr 4229): 1628Google Scholar, 40Patrick C Padgett KD Schlesinger HJ Cohen J Burns BJ Serious physical illness as a stressor: effects on family use of medical services.Gen Hosp Psychiatry. 1992; 14: 219-227Summary Full Text PDF PubMed Scopus (11) Google ScholarThese caregiving and economic demands may be worse in the USA than in developed countries with universal health coverage that provides more comprehensive medical services. Yet in at least one study of Americans, these economic demands occurred despite health insurance.36Covinsky KE Goldman L Cook EF et al.The impact of serious illness on patients' families.JAMA. 1994; 272: 1839-1844Crossref PubMed Google Scholar, 38Houts PS Yasko JM Harvey HA et al.Unmet needs of persons with cancer in Pennsylvania during the period of terminal care.Cancer. 1988; 62: 627-634Crossref PubMed Scopus (94) Google