Study Finds 25% of Terminal Cancer Patients Suffer Significantly

CANADA, 2 May 07 -- In a series of detailed interviews, 381 patients receiving palliative care across Canada were asked, “In an overall, general sense, do you feel you are suffering?”

Of this group, 49 per cent reported they were not suffering, while 25 per cent reported only minimal or mild suffering.

“We found, much to our surprise, that half of these patients at this particular time said, ‘Right now, things are OK for me. I would not consider myself to be suffering,’ said lead author Keith Wilson, an associate scientist at the Ottawa Health Research Institute. “The word ‘suffering’ was one a lot of people didn’t want to buy into.”

The results, published Tuesday in the Journal of Clinical Oncology, are part of the Canadian National Palliative Care Survey, funded by the Canadian Institutes of Health Research. The expansive study explores a range of quality-of-life issues in palliative care, including depression and anxiety, as well as euthanasia and physician-assisted suicide.

Mr. Wilson said the study still showed there is a need to improve palliative care in Canada.

“When we find 26 per cent of people are still suffering significantly, the mission of palliative care is not over­there’s still room to grow, still things to be learned about how to relieve suffering among people who are dying.”

The $16.5-million national survey is one of the most comprehensive palliative care studies to date, said Judith Bray, assistant director of the Institute for Cancer Research.

Not only do the results of the study offer insight into the effectiveness of end-of-life care, they also offer much-needed comfort to patients, she said.

“For the cancer patient, it’s very reassuring to have this kind of data coming out, to hopefully dispel the myth that cancer is going to leave you in pain, suffering and agony for years.”

Eight institutes participated in the interviews, which began several years ago, recruiting palliative care patients who were physically and mentally able to withstand a detailed, hour-long interview, said Mr. Wilson.

“We were only able to interview people who were medically well enough to tolerate an interview of about an hour, and who were mentally alert and competent,” he said. “So that kind of restricts things to a particular segment of the palliative care population.”

The interviews were conducted by nurses, social workers and psychologists, who assessed patients’ physical and psychological issues and the degree of severity.

“We asked, “How much would you say you’re suffering?” said Mr. Wilson, adding he was taken aback by the number of patients who didn’t think they were suffering at all.

“In some respects, we think people are pretty resilient. In other respects, we have to acknowledge these were not the sickest of palliative care patients. We don’t have any information on how their suffering might change over time.

Mr. Wilson defined suffering as “any threat to the integrity of the person and their sense of self, whether it’s a psychological threat, or physical symptoms that are impinging on that.”

“The goal of palliative care is to relieve the suffering of people who have it,” he said. “And so if the palliative care clinicians who referred patients to us have been successful in that mission, then it speaks a lot to the capacity to relieve the suffering of the terminally ill.”

By Kelly Roesler, Ottawa Citizen

The Journal Article

Reference

Keith G. Wilson, Harvey Max Chochinov, Christine J. McPherson, Katerine LeMay, Pierre Allard, Srini Chary, Pierre R. Gagnon, Karen Macmillan, Marina De Luca, Fiona O'Shea, David Kuhl, Robin L. Fainsinger, Suffering with Advanced Cancer, Journal of Clinical Oncology, 25 (3), May 1, 2007, pp 1691-1697.

Abstract

Purpose: The alleviation of suffering is a central goal of palliative care, but little research has addressed the construct of suffering as a global experience of the whole person. We inquired into the sense of suffering among patients with advanced cancer to investigate its causes and correlates.

Patients and Methods: Semi-structured interviews were administered to 381 patients. The interviews inquired about physical symptoms, social concerns, psychological problems, and existential issues. We also asked, "In an overall, general sense, do you feel that you are suffering?"

Results: Almost half (49.3%) of respondents did not consider themselves to be suffering, and 24.9% felt that they suffered only mildly. However, 98 participants (25.7%) were suffering at a moderate-to-extreme level. The latter participants were more likely to experience significant distress on 20 of the 21 items addressing symptoms and concerns; the highest correlations were with general malaise (rho = 0.56), weakness (rho = 0.42), pain (rho = 0.40), and depression (rho = .39). In regression analyses, physical symptoms, psychological distress, and existential concerns, but not social issues, contributed to the prediction of suffering. In qualitative narratives, physical problems accounted for approximately half (49.5%) of patient reports of suffering, with psychological, existential, and social concerns accounting for 14.0%, 17.7%, and 18.8%, respectively.

Conclusion: Many patients with advanced cancer do not consider themselves to be suffering. For those who do, suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.

Editorial Comment

The Journal of Clinical Oncology published this editorial comment about the methodology of the study.

Was this population significantly different from those in the earlier studies? The investigators point out that, indeed, their sample was biased. All patients had access to specialist palliative care services and had to be functioning well enough to engage in a detailed interview.

With access to palliative care, it is very likely that many of their physical symptoms were under control and many of the psychosocial issues that emerge at the end of life were being addressed. While these are the most likely explanations, the investigators also pose the idea of the inherent resilience of this population and their ability to “withstand the physical and psychological challenges of advanced cancer...”

However, this does not explain why this sample reported less suffering than those in the other studies. The impact of good palliative care can be profound, and this sample might be evidence of this. Thus, the total picture of suffering among advanced cancer patients remains incomplete.