Chemotherapy
For better, for worse? A report by the National Confidential Enquiry into Patient Outcome and Death (2008)
Our contemporary culture does not deal well with death. There is great fear of cancer, and there is folk lore
surrounding chemotherapy. Consequently, many fears go unspoken between the dying and their families because they are overwhelming. Conversations between cancer patients and their doctors are not easy either. Patients have an inherent desire to trust their doctor and to believe that something positive might happen; most doctors have a compelling desire to not distress their patients. These factors together can lead to some unfortunate management decisions, resulting in “doing something” - perhaps in doing anything - to not let such emotionally needy patients down. Revisiting these decisions in an enquiry is not easy either, but questions that are not asked are likely to go unanswered.
This report from NCEPOD (National Confidential Enquiry into Patient Outcome and Death) explores this territory.
It asks difficult questions about what happened in the few weeks before death. At stressful times the
option appraisal between doctors and patients can be difficult to unravel, and with hindsight all parties may
wish something else had been done. There are some unpalatable findings about the decisions that emerged
and the way in which they were made. I must first spell out with absolute clarity that the design
of the study is deliberately biased towards discovering things that might have been handled better. The starting
point is a death that occurred within 30 days of having chemotherapy; this is a small minority of such treatments. Chemotherapy has transformed the outlook for many cancer patients who have longer and better lives. While the starting point is a death, that death may be completely in accordance with the very best medical.practice. Death may have been due to the remorseless progression of the cancer but chemotherapy is toxic and some patients’ deaths are hastened by treatment. We cannot put the clock back and treat only those
who escaped that risk. Hindsight should be used with caution; there should not be over interpretation of any
part of the report.Oncologists have a more secure evidence base than many other areas of medical and surgical practice and constantly refer to trial data in clinical discussions. That said, why were only 4% of these patients in clinical trials? The philosopher Martyn Evans has cogently argued that trials are not an option but an obligation.1 Oncologists have high quality evidence from clinical trials on previous patients; do not today’s patients and doctors owe it to future patients to add to the evidence? We need trials of treatment in all contexts, including near end of life chemotherapy, on which to base future practice.The study revealed a number of substantial concerns. We discovered unwillingness of some doctors to have their practice scrutinised – and an explicit avoidance of peer review. The return rate of questionnaires was lower than we are accustomed to for NCEPOD studies. Barely half the casenotes were sent to us and only two thirds of questionnaires, while we expect more than 80%. Repeated reminders were sent, from NCEPOD, Royal Colleges and the “cancer Czar”, without much effect. The shortfall in returns might be put down to overwork (and oncologists are thinly spread) but some wrote that questionnaires would not be returned because only the treating doctor, not the multidisciplinary teams, and by implication, not NCEPOD could judge the appropriateness of treatment
LINK TO FULL REPORT
Our contemporary culture does not deal well with death. There is great fear of cancer, and there is folk lore
surrounding chemotherapy. Consequently, many fears go unspoken between the dying and their families because they are overwhelming. Conversations between cancer patients and their doctors are not easy either. Patients have an inherent desire to trust their doctor and to believe that something positive might happen; most doctors have a compelling desire to not distress their patients. These factors together can lead to some unfortunate management decisions, resulting in “doing something” - perhaps in doing anything - to not let such emotionally needy patients down. Revisiting these decisions in an enquiry is not easy either, but questions that are not asked are likely to go unanswered.
This report from NCEPOD (National Confidential Enquiry into Patient Outcome and Death) explores this territory.
It asks difficult questions about what happened in the few weeks before death. At stressful times the
option appraisal between doctors and patients can be difficult to unravel, and with hindsight all parties may
wish something else had been done. There are some unpalatable findings about the decisions that emerged
and the way in which they were made. I must first spell out with absolute clarity that the design
of the study is deliberately biased towards discovering things that might have been handled better. The starting
point is a death that occurred within 30 days of having chemotherapy; this is a small minority of such treatments. Chemotherapy has transformed the outlook for many cancer patients who have longer and better lives. While the starting point is a death, that death may be completely in accordance with the very best medical.practice. Death may have been due to the remorseless progression of the cancer but chemotherapy is toxic and some patients’ deaths are hastened by treatment. We cannot put the clock back and treat only those
who escaped that risk. Hindsight should be used with caution; there should not be over interpretation of any
part of the report.Oncologists have a more secure evidence base than many other areas of medical and surgical practice and constantly refer to trial data in clinical discussions. That said, why were only 4% of these patients in clinical trials? The philosopher Martyn Evans has cogently argued that trials are not an option but an obligation.1 Oncologists have high quality evidence from clinical trials on previous patients; do not today’s patients and doctors owe it to future patients to add to the evidence? We need trials of treatment in all contexts, including near end of life chemotherapy, on which to base future practice.The study revealed a number of substantial concerns. We discovered unwillingness of some doctors to have their practice scrutinised – and an explicit avoidance of peer review. The return rate of questionnaires was lower than we are accustomed to for NCEPOD studies. Barely half the casenotes were sent to us and only two thirds of questionnaires, while we expect more than 80%. Repeated reminders were sent, from NCEPOD, Royal Colleges and the “cancer Czar”, without much effect. The shortfall in returns might be put down to overwork (and oncologists are thinly spread) but some wrote that questionnaires would not be returned because only the treating doctor, not the multidisciplinary teams, and by implication, not NCEPOD could judge the appropriateness of treatment
LINK TO FULL REPORT