Whose Job Is It? Caring for the Dying in Hospital

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Cost-cutting measures in the health care system means more work for relatives and friends— even in hospital, and even when the patient is dying. Social scientist Christina Sinding interviewed relatives and friends of women who died of breast cancer in Ontario, and learned more about this apparent shift in responsibility. The women and men in her study found themselves regularly providing routine care, acting as patient advocates and “chasing” doctors or nurses while trying not to be perceived as irritants. Is the quality of health care in Canadian hospitals becoming contingent on relatives and friends? What happens, Sinding asks, when ill people do not have relatives and friends with them in hospital?

Dr. Christina Sinding is a sociologist with the Ontario Breast Cancer Community Research Initiative, a project funded by the Canadian Breast Cancer Foundation, Ontario Chapter. As part of her doctoral research, she interviewed relatives and friends of Ontario women who had died of breast cancer in 2000 or 2001. As they described their experiences caring for a family member or friend in a hospital setting, Sinding paid particular attention to their perceptions of their interactions with doctors and nurses.

The husbands, partners, daughters and friends that Sinding interviewed were very much aware of the strained working conditions in contemporary hospitals. Nurses were often too busy to provide routine care, they said, or to respond in a timely way to patient needs. The women and men that Sinding interviewed said they frequently assisted with a range of nursing tasks, from helping a patient to the commode to supplying her with washing materials. Sometimes they worked directly with nurses, for instance, to turn a patient in bed.

These “informal caregivers” provided or assisted in providing care on a daily basis, often for weeks, and in some cases, for months at a time. Many came to see their own comings and goings from the ill woman’s bedside as a shift change. “I’d check out with the nursing staff at around 11:30 or 12, to let them know I was going, and that Kate was on her own,” said one caregiver.

Friends and relatives also found themselves working hard to secure care from busy health professionals. As Sinding heard it, this responsibility devolved into three tasks.

Progress chasing
“Progress chasing” included monitoring and reporting on the patient’s condition, tracking care schedules, and, when necessary, intervening in the care provided by health professionals. “I kept notes every day,” said one respondent. “How many pills she’s taken, when she had a bowel movement, colour of her skin, temperature, everything. Because the nurses can’t. They’ve got 110 patients.”

Many family and friends described watching their patient for signs of discomfort, then locating a health professional and drawing her or his attention to the change in the patient’s condition. Respondents also commonly ensured that routine care was provided in a timely way by seeking a nurse when scheduled medication had not been given or when the patient was due to be turned in bed. As respondents saw it, the tracking they undertook secured health professional attention to the patient’s needs, both for routine care and for new symptoms.

Trading services
Family and friends also spoke of “helping” health professionals, and thereby creating a basis of reciprocity that would pay off in the long run. Nurses appeared to appreciate the hands-on care that they provided, several respondents said. “I think the nurses were more prepared to give her [the patient] some extra time, maybe in the middle of the night if nobody was there, because they knew that during the day I’d be there to help out,” said one interviewee.

Being known
Almost without exception, respondents commented on the value of becoming known as an individual to health professionals. Being known was linked, in their accounts, to swift responses by health professionals to care concerns. Some respondents saw it as a deliberate strategy to secure (better) care.

At the same time, respondents noted, the activities associated with progress chasing could easily lead to them being perceived as demanding, or needlessly anxious about the patient. “It’s a fine line,” said one interviewee. A number of respondents worried about incurring the displeasure of health professionals.

This is the central contradiction of informal caregiving in institutions, Sinding notes. Informal caregivers must “chase” health professionals because care needs will go unmet if they do not; and, informal carers must not bother health professionals because care may be withheld or compromised if nurses or physicians are irritated. When health professionals are “run off their feet,” both the requirement and the risks of progress chasing are heightened because the possibility that the patient’s needs will go unmet is higher. It’s also more likely that health professionals will perceive these efforts by family and friends to secure their attention and labour as demands.

In Canada, universality is a key principle of health care. But what happens when patients have no relatives or friends with them in hospital? Sinding’s qualitative study suggests that such patients lose more than the labour and support of relatives and friends. They may also find that the attention and empathy of health professionals is compromised.

The level and quality of health care in Canada may be increasingly contingent on informal caregivers. This means it is unequally distributed amongst the population, and more available to people whose family and friends are able to take up the responsibilities described here, including nursing roles. People with limited or fractured social networks are denied access to informal care. Despite continuing declarations on the part of public officials that two-tier health care will not be tolerated in Canada, this study suggests that service tiers exist in the institutional care system, linked to the time, knowledge and resources—both personal and social—of informal caregivers.

For more information about this study, email christina.sinding@tsrcc.on.ca or call (416) 351-3808.