Researchers explore quality of cancer death, end of life issues

Dying does not have to be a miserable experience, particularly when supports are in place, according to researchers Sarah Hales, MD, and Gary Rodin, MD.

Hales and Rodin, of the Psychosocial Oncology and Palliative Care department at the Princess Margaret Cancer Centre in Toronto, and the Department of Psychiatry at the University of Toronto, conducted a retrospective study to determine the quality of death among patients with cancer as it related to palliative care and place of death.

Sarah Hales

“This project really began out of an interest in what the subjective experience of death and dying is. We know a lot of the circumstances about death, but we haven’t known a lot about the subjective experience of those involved, and how they would rate the experience,” Hales told HemOnc Today in an interview.

Hales and colleagues surveyed 402 caregivers 8 to 10 months after a patient died from cancer and asked them to rate the quality of the experience. The study, “The Quality of Dying and Death in Cancer and Its Relationship to Palliative Care and Place of Death,” was recently published in the Journal of Pain and Symptom Management.

Methods and findings

Caregivers were given a Quality of Dying and Death (QODD) questionnaire and were interviewed for the study. To the surprise of the researchers, over 38% rated the quality of death as “good” or “almost perfect” while 61% rated their care as “neither good nor bad” The lowest QODD scores rated symptom control as “terrible” to “poor” by 18.5% of caregivers.

“The measure was pretty broad, and it covered everything from pain and symptom control to a sense of social connectedness for the patient; to the extent they experienced death-related distress and to the extent they were prepared for the end of life, so it captured dying really broadly,” Hales said.

“We were fairly surprised to find that overall, the general rating of these measures was in the intermediate to positive range,” she said. “I think many people imagine that death and dying is going to be a terrible experience, so we were very intrigued to find that caregivers — bereaved caregivers no less, who are experiencing grief and loss — would rate the experience as good enough.”

Trends with the most negative associations seen were related to the place of death. It was found that death in an institution, or acute or palliative care center were rated more negatively, but Hales noted the difference was not large.

“There was also an association with age of the caregiver. I think this touches on the fact that older individuals often experience death and dying differently, and it is sometimes a less traumatic experience. I think that makes sense developmentally, as people are more prepared for death if they are older,” Hales said.

Suffering is not inevitable

Rodin said the study makes a good case for the value of palliative care and having a support system in place for oncology patients.

Gary Rodin

“We think the high availability of palliative care, at least in this sample, accounts for some of the very high level of satisfaction,” Rodin explained. “It’s not to say that these deaths aren’t a tragedy for the families involved, but it’s possible to go through the end of life without unbearable suffering, without uncontrolled symptoms…and to have the medical and other support that you need in most cases.”

Rodin also noted that this study adds dimension to the discussion of assisted dying. “There are ethical issues about death in its own right, but most of the time, the assumption in that argument is that there must inevitably be unbearable suffering at the end of life, and this data suggests that maybe that isn’t the case,” he said.

Limitations of the study

The study is not without sample biases, which Hales and Rodin acknowledged. The mean income was over $95,000, and the participants were well-educated and born in Canada, with few immigrants among them.

“One thing I think is important about this study is that this population had a high degree of access to specialized palliative care. We think that has a lot to do with these results. In contrast with the literature from a decade ago looking at the end of life, there was a much higher proportion of people who had a lot of pain and suffering at the end of their life,” Rodin told HemOnc Today.

Other sample biases may be derived from the participation rate. About 50% of those contacted participated in the study.

“Unfortunately, we don’t know a lot about those who didn’t respond to our request. This is a real problem with this kind of investigation. Whenever you’re wanting to interview bereaved caregivers after a loss, inevitably, studies will tend to get a participation around this level,” Hales said, and noted that women tended to be more likely to participate than men.

“We’re kind of missing their voice in a lot of cases,” she said, but added that women are more likely to be caregivers.

Rodin added, “I’m sure if we had access to all of the deaths in Ontario or across Canada, we would find many more unsatisfactory deaths. This indicates that if we can make these kinds of services available, it is possible to achieve a good quality of death and dying.”

Hales and Rodin said further research is needed to address other populations.

“One piece of research that we’re conducting right now is looking at the quality of death and dying in nursing homes,” Rodin said. He also said a rural study is underway to understand the quality of death in areas where there is less access to palliative care.

No one-size solution

“I think what these data show is that there isn’t one right place to die,” Rodin said and noted that a common perception is that people should be able to die at home.

“For some people, the hospital is a better place to be, hospices for some people, and for other people, at home. These data suggest that there can be a reasonable quality of death for people in a variety of locations. As a system, we need a continuum. We need to support home death when it’s possible, and we need to have good care in the hospital when death occurs there. And we need hospices and other kinds of intermediate care places that are kind of a hybrid of institutions.” – by Shirley Pulawski