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Family Opinions About End-of-Life Medical Care



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Am Fam Physician. 1998 Mar 1;57(5):1108-1110.

How good a job, in the opinion of family members, do physicians do in providing end-of-life care? Hanson and colleagues interviewed recently bereaved family members about the terminal care given their relative to determine what their perceptions were and what suggestions they had to improve end-of-life care.

Death certificates were obtained for people who were older than 65 years of age when they died and whose cause of death was listed as chronic lung disease, cancer, cirrhosis, congestive heart failure or stroke. A family member was interviewed to determine if the decedent had had cardiopulmonary resuscitation (CPR), had been on a ventilator or had been in an intensive care unit during the final month of life. The family member was asked about conversations with the physician concerning the use of these treatments and the existence of living wills or similar advanced directives. The family member was also asked, “Do you believe that more medical treatments should have been used to keep [your relative] alive as long as possible?” and “Do you believe that more medical treatments should have been used to relieve [your relative's] pain?”

A total of 461 telephone interviews were completed. About one half of the decedents had died of cancer. Nine percent of patients had received CPR, 11 percent had been on a ventilator and 24 percent had been in an intensive care unit during the last month of life. In less than one half (46 percent) of cases, a capable patient had discussed end-of-life treatments with a physician. In 6 percent of cases, capable patients did not discuss end-of-life decisions with their physicians, although family members had such discussions. Family members generally did not disagree with the final treatments ordered, although 6 percent of patients or interviewees had wanted treatment not recommended by the physician, and 8 percent of family members thought that more treatment should have been used to prolong life. Most respondents (78 percent) thought that the decedent had pain at the end of life, and 12 percent thought more pain relief had been needed; 18 percent thought more relief had been needed for other symptoms. Almost all comments (91 percent) about hospice care were positive, and 69 percent were pleased with hospital care. Nursing home care generated the lowest percentage of positive comments (51 percent). Staff there were thought to be inattentive and poorly trained, and physicians were thought to be remote.

The authors conclude that some of the suggestions provided by the participants could help efforts to improve end-of-life medical care. In general, the recommendations involved improved communication; specifically, families wanted more information about prognoses, less medical jargon and greater access to physicians.

Hanson LC, et al. What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc. 1997;45:1339–44.



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