Editorials

End-of-Life Care



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Am Fam Physician. 2002 Mar 1;65(5):787-791.

Organized medicine has proved to be somewhat unprepared for the current intensity of public interest in a domain—end-of-life care—that was once the province of physicians. Physicians have been appropriately criticized for providing expensive, futile care as well as being insensitive to the needs of dying patients and their families.1,2 Physicians have been described as being uncomfortable with the notion of death and being death-denying in the context of their personal belief systems. Physicians have been accused of withholding potentially comforting resources from patients who need them.3,4 Slow responses and patriarchal attitudes have left physicians vulnerable to criticism, some of which is justifiable. However, new directions in end-of-life care may soon change these attitudes and help physicians better adapt to the needs of patients who are dying. Following are some of the areas where innovation is currently taking place.

  • A changing definition of the terminally ill. Cancer patients beyond cure are frequently used to set the defining standard for terminal illness.1 This narrow definition may lead to decreased sensitivity toward patients with chronic diseases for whom death is also certain. Patients with class IV heart failure, diabetic patients with renal failure, and those in the latter stages of Alzheimer's disease are examples of other patients who are at the end of life and deserve the same considerations typically afforded to patients dying of cancer.

  • A less rigid approach to advance directives. Emanuel and Emanuel5 looked at advance directives and identified several concerns with them. First, patients may find it difficult to understand all of the relevant medical issues. Second, people change their minds about the types of medical treatments they want. Third, a patient's previously stated preferences may need to be applied to unanticipated circumstances.

    Brett6 also demonstrated significant problems associated with attempts to present proxies with lists of potential medical interventions in an attempt to craft a useful advance directive. He found that such lists may divert attention from overall treatment goals or lead to inappropriate care. Furthermore, listing interventions in advance does not necessarily enhance self-determination or reduce uncertainty in decision making. For family physicians, the major advantage of or usefulness for advance directives may not be in their application, but that they serve as an indication that a patient has considered the probability of death and demonstrated an effort to plan accordingly. Not surprisingly, at most, 15 to 20 percent of the at-risk patient population has completed advance directives.7

  • Increased knowledge of prognostic indicators. Family physicians need to acquire the skills necessary to determine when patients are in need of hospice care and recognize the value of using the topic of hospice care to talk about the imminence of death. Prognostic indicators have been developed to determine both hospice eligibility and the likelihood of impending death. All physicians caring for patients at the end of life should be familiar with these indicators and their application (Table 18). It is particularly important for physicians to become more familiar with these indicators because, while patients qualify for hospice care when their life expectancy is six months or less, hospice patients, on average, die within three to six weeks of initiation of hospice care.9

    Physicians owe it to themselves, their patients, and their patients' families to truthfully represent the status of an illness. Phrases such as “poor prognosis” and “guarded condition” should be discarded because they are deceptive and avoidant terms that are often used to misrepresent the fact that a patient is dying. Physicians must learn to engage in gentle but direct truth-telling in the dispensation of their duty to patients who depend on them for accurate yet compassionate descriptions of their condition. Doing so allows all who are engaged in the journey to better prepare themselves for the death of the patient.

TABLE 1

Prognostic Indicators to Assist in Determining Hospice Eligibility

Indicators suggesting a life expectancy of fewer than 14 days

Anuric—no dialysis

Confusion/delirium with no obvious cause

Minimal or no oral intake

Cheyne-Stokes respirations/mottled skin/cool extremities

Pooled oropharyngeal secretions (death rattle)

Indicators suggesting a life expectancy of 3 months or less

In bed >50 % of time

Hypercalcemia (in cancer patients, with the exception of patients with new myeloma or breast cancer)

Dyspnea (HIV, cancer patients)

Carcinomatous meningitis or malignant pericardial effusion

Liver metastases with jaundice

Indicators suggesting a life expectancy of 6 months or less

Brain metastases

Metastatic solid cancers—no treatment planned or none effective (with the exception of patients with breast or prostate cancer)

Malignant ascites or pleural effusion

Severe dementia—no speech, bed bound, incontinent

Central nervous system lymphoma (HIV)

Congestive heart failure/chronic obstructive pulmonary disease

Symptomatic despite maximal treatment

Weight loss

Frequent hospitalization

Rest dyspnea/tachycardia


HIV = human immunodeficiency virus.

Adapted from Medical guidelines for determining prognosis in selected non-cancer diseases, 2d ed. National Hospice Organization, 1996.

TABLE 1   Prognostic Indicators to Assist in Determining Hospice Eligibility

View Table

TABLE 1

Prognostic Indicators to Assist in Determining Hospice Eligibility

Indicators suggesting a life expectancy of fewer than 14 days

Anuric—no dialysis

Confusion/delirium with no obvious cause

Minimal or no oral intake

Cheyne-Stokes respirations/mottled skin/cool extremities

Pooled oropharyngeal secretions (death rattle)

Indicators suggesting a life expectancy of 3 months or less

In bed >50 % of time

Hypercalcemia (in cancer patients, with the exception of patients with new myeloma or breast cancer)

Dyspnea (HIV, cancer patients)

Carcinomatous meningitis or malignant pericardial effusion

Liver metastases with jaundice

Indicators suggesting a life expectancy of 6 months or less

Brain metastases

Metastatic solid cancers—no treatment planned or none effective (with the exception of patients with breast or prostate cancer)

Malignant ascites or pleural effusion

Severe dementia—no speech, bed bound, incontinent

Central nervous system lymphoma (HIV)

Congestive heart failure/chronic obstructive pulmonary disease

Symptomatic despite maximal treatment

Weight loss

Frequent hospitalization

Rest dyspnea/tachycardia


HIV = human immunodeficiency virus.

Adapted from Medical guidelines for determining prognosis in selected non-cancer diseases, 2d ed. National Hospice Organization, 1996.

  • Enhanced teamwork and communication skills. Because it is not unusual for patients to return to their family physicians for care after therapeutic efforts by consultants have failed, family physicians must be prepared to invest their time in caring for patients who are at the end of life. The importance of physicians knowing themselves cannot be underestimated in terms of its value for enabling them to respond appropriately. All physicians should have a clear understanding of their feelings about death and how those feelings can facilitate their ability to provide care or inhibit their ability to make good decisions. Patients and their families require attentive, compassionate, and well-worded explanations of what is transpiring. Inattention on the part of the physician can result in alienation, a sense of abandonment, and, occasionally, malpractice litigation.

    Anticipating the needs of patients who are dying is worthwhile. Patients have significant fears about pain and abandonment, and they may present those in the form of a request for euthanasia.9 Knowledge of pain management modalities is necessary.10 Many protocols for pain management are available, and physicians should select from among them.11,12 Physicians must be available to their patients or have a surrogate available at all times. Family physicians know that providing care for a patient during the final stages of death bears much resemblance to providing care for a woman during delivery and requires similar attentiveness.

    Steinmetz and Gabel13  have proposed a comprehensive theoretic model(Table 2) that describes three dimensions of care. The first dimension focuses on direct involvement with the patient and family; the second on the physician's own needs and development; and the third on cooperation with other caregivers.

TABLE 2

The Family Physician's Role in Caring for the Dying Patient and Family: A Comprehensive Theoretical Model

Dimension I: direct involvement with patient

Dimension II: physician's own needs/development

Dimension III: cooperation with other caregivers

Death education

Continuing medical education

As educator/team leader

Doctor-patient relations

Own feelings

Community facilities

Family

Supervision

Other professionals

Grief and bereavement

Support groups

Legal and ethical

Symptom relief


Adapted with permission from Steinmatz D, Gabel LL. The family physician's role in caring for the dying patient and family: a comprehensive theoretical model. Fam Pract 1992;9:433–6.

TABLE 2   The Family Physician's Role in Caring for the Dying Patient and Family: A Comprehensive Theoretical Model

View Table

TABLE 2

The Family Physician's Role in Caring for the Dying Patient and Family: A Comprehensive Theoretical Model

Dimension I: direct involvement with patient

Dimension II: physician's own needs/development

Dimension III: cooperation with other caregivers

Death education

Continuing medical education

As educator/team leader

Doctor-patient relations

Own feelings

Community facilities

Family

Supervision

Other professionals

Grief and bereavement

Support groups

Legal and ethical

Symptom relief


Adapted with permission from Steinmatz D, Gabel LL. The family physician's role in caring for the dying patient and family: a comprehensive theoretical model. Fam Pract 1992;9:433–6.

Russell G. Robertson, M.D., is an assistant professor in the Department of Family and Community Medicine at the Medical College of Wisconsin, Milwaukee. Dr. Robertson holds a CAQ in geriatrics.

Address correspondence to Russell G. Robertson, M.D., Department of Family and Community Medicine, 8701 Watertown Plank Road, Milwaukee, WI 53226.

REFERENCES

1. Emanuel EJ, Emanuel LL. The economics of dying: the illusion of cost savings at the end of life. N Engl J Med. 1994;330:540–4.

2. Foley K. A 44-year-old woman with severe pain at end of life. JAMA. 1999;281:1937–45.

3. Latimer E. Caring for seriously ill and dying patients: the philosophy and ethics. Can Med Assoc J. 1991;144:859–64.

4. Smith TJ, Swisher K. Telling the truth about terminal cancer [Editorial]. JAMA. 1998;279:1746–8.

5. Emanuel LL, Emanuel EJ. Decisions at the end of life: guided by communities of patients. Hastings Cent Rep. 1993;23(5):6–14.

6. Brett AS. Limitations of listing specific medical interventions in advance directives. JAMA. 1991;266:825–8.

7. Larson EJ, Eaton TA. The limits of advance directives: a history and assessment of the Patient Self-Determination Act. Wake Forest Law Rev. 1997;32:249–93.

8. Medical guidelines for determining prognosis in selected non-cancer diseases, 2d ed. Arlington, Va.: National Hospice Organization, 1996.

9. Lassauniere JM, Vinant P. Prognostic factors, survival and advanced cancer. J Palliat Care. 1992;8(4):52–4.

10. Miles SH. Physicians and their patients' suicides. JAMA. 1994;271:1786–8.

11. Management of Cancer Pain Guideline Panel. Management of cancer pain. Clinical practice guideline no. 9. AHCPR Publication No. 94-0592. Rockville, MD: Agency for Health Care Policy and Research, U.S. Department of Health and Human Services, Public Health Service, 1994.

12. Palliative Oncology Committee, American Association for Cancer Education. Cancer pain objectives for medical students and residents in primary care specialties. J Cancer Educ. 1996;11(1):7–10.

13. Steinmetz D, Gabel LL. The family physician's role in caring for the dying patient and family: a comprehensive theoretical model. Fam Pract. 1992;9:433–6.



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