Changing Perspectives on Palliative Care

April 1, 2002

Drs. Choi and Billings provide an excellent summary of the historical developments, clinical issues, and ethical dilemmas associated with palliative care. As they recount, the British hospice movement of the 1960s began as a fringe movement away from the main academic centers and organized medicine. This separation provided a safe environment in which palliative-care practitioners could deliver clinical care while establishing a new body of knowledge. On the other hand, because of this lack of connection, palliative care is still not recognized as a specialized area of medical practice in many countries, including the United States. This perception persists despite the fact that palliative care developed earlier than other fully recognized subspecialties such as emergency medicine and critical care.

Drs. Choi and Billings provide anexcellent summary of the historical developments, clinical issues, and ethicaldilemmas associated with palliative care. As they recount, the British hospicemovement of the 1960s began as a fringe movement away from the main academiccenters and organized medicine. This separation provided a safe environment inwhich palliative-care practitioners could deliver clinical care whileestablishing a new body of knowledge. On the other hand, because of this lack ofconnection, palliative care is still not recognized as a specialized area ofmedical practice in many countries, including the United States. This perceptionpersists despite the fact that palliative care developed earlier than otherfully recognized subspecialties such as emergency medicine and critical care.

Although all tertiary-care hospitals have a fully organizedemergency room as well as intensive care and coronary care units, only a fewhave an established palliative-care unit. And yet hundreds of patients die eachyear of progressive chronic illness in every major tertiary hospital. Moreover,there is solid economic and financial justification for establishingpalliative-care units.[1-3] These units provide sophisticated clinical care tocancer patients suffering from severe physical and psychosocial distress (andtheir families), and are also the most effective settings for education andresearch.

Choi and Billings appropriately describe the use of palliativecare in the prevention of suffering. Proposed by MacDonald as the fourth phaseof his comprehensive cancer control program,[4] this model led to theendorsement of palliative care by the World Health Organization in its cancercontrol policies.[5]

A Helpful Bridge

The area of artificial nutrition and hydration is one in whichpalliative care can act as a bridge between the traditional hospital-basedpractice (universal hydration) and the traditional hospice practice (universalnonhydration). Outcomes such as hunger and thirst are of limited informationalvalue in these patients because their correlation with nutritional and hydrationstatus is poor.[6] On the other hand, progressive dehydration can result indelirium, increased fatigue, accumulation of neurotoxic metabolites of opioidsand other drugs, and numerous other symptoms. Subcutaneous hydration can beadministered safely by patients and their relatives and can offer an alternativeto dehydration or the maintenance of a complex and expensive intravenous routeat home.[7,8]

Choi and Billings discuss the importance of palliative care asan aid to communication with patients and families. Research has shown thatsimple aids to communication such as audiocassettes and prompt sheets canimprove communication among physicians, patients, and their families.[9,10]

Care at the End of Life

The issues surrounding care at the end of life are particularlycomplex and require better characterization. For example, the term"intractable suffering" needs to be better defined. Should it refer tophysical and psychological symptoms or should it also include existentialsuffering? What efforts should be made to rule out delirium or depression inpatients who present with intractable suffering? What efforts to control thesesymptoms should be made before intractable suffering is diagnosed? Prospectiveresearch must be conducted to better characterize this syndrome and to definethe most appropriate treatment.

Choi and Billings appropriately discuss the enormous attentionpaid to the issues of physician-assisted suicide and euthanasia. In NorthAmerica, however, this issue is relevant to only a minority of patients andtheir families. Perhaps the most pressing issue is that of improving access topalliative care for patients and families. Most North American cancer patientsdie in acute-care facilities where there are no designated palliative-care teamsor units. One of the greatest challenges for our health-care system is to ensurethat these patients have access to appropriate palliative care. A greatchallenge for academic medicine, too, is to ensure that we improve the body ofknowledge in all the areas outlined by Choi and Billings.

References:

1. Brenneis C, Bruera E: Models for the delivery of palliativecare: The Canadian model, in Bruera E, Portenoy RK (eds): Topics in PalliativeCare, vol 5. New York, Oxford University Press, 2001.

2. von Gunten CF, Muir JC: Palliative medicine: An emergingfield of specialization. Cancer Invest 18(8):761-767, 2000.

3. Payne SK, Smith TJ, Coyne P, et al: A high-volume specialistpalliative care unit (PCU) and team reduces end-of-life (EOL) costs (abstract1556). Proc Am Soc Clin Oncol 20:390a, 2001.

4. MacDonald N: Suffering and dying in cancer patients. West JMed 163:278-286, 1995.

5. National Cancer Control Programmes—Policies and ManagerialGuidelines, pp 82-86. Geneva, World Health Organization, 1995.

6. Steiner N, Bruera E: Methods of hydration in palliative carepatients. J Palliat Care 14(2):6-13, 1998.

7. Fainsinger RL, Bruera E: When to treat dehydration in aterminally ill patient? Support Care Cancer 23(6):23-28, 1997.

8. MacDonald N, Fainsinger R: Indications and ethicalconsiderations in the hydration of patients with advanced cancer, in Bruera E,Higginson I (eds): Cachexia-Anorexia in Cancer Patients. New York, OxfordUniversity Press, 1996.

9. Bruera E, Pituskin E, Calder K, et al: The addition of anaudiocassette recording of a consultation to written recommendations forpatients with advanced cancer. Cancer 86(11):2420-2425, 1999.

10. Brown R, Butow PN, Boyer MJ, et al: Promoting patientparticipation in the cancer consultation: Evaluation of a prompt sheet andcoaching in question asking. Br J Cancer 80:242-248, 1999.