As a recent immigrant and a palliative care physician leader in Quebec, I am deeply troubled by reports about the experience of Andrée Simard and her family at St. Mary’s Hospital. However, having come to know the challenges experienced by people affected by serious illness in Quebec and the clinicians and hospitals who care for them, I am not surprised.
Simard’s daughter Michelle Bourassa said her mother went through “untold suffering” because of inadequate pain relief in the days leading up to her death in November.
What was being described, first in La Presse , was not a failure of care at St. Mary’s, but rather, a symptom of a broken system.
We need three urgent reforms to prevent traumatic experiences (for patient and caregiver) like those recounted by Bourassa.
First is a reform to our thinking. While palliative care was initially conceptualized as an alternative name for hospice, with a focus on caring for those at the very end of life, a preponderance of evidence demonstrates that palliative care benefits people across the entire trajectory of serious illness through improved quality of life, improved psychological well-being for patients and their loved ones, and even, in some cases, longevity. This is true for cancer and true for other serious illnesses. When we conceptualize palliative care as only end-of-life care, patients and families are left at the mercy of whatever definition of “end-of-life” is held by the clinician in front of them. This often results in palliative care being offered too late if at all. This is worse when patients don’t have cancer, because physicians struggle even more to identify when patients are approaching death.
Second is a reform to hospital policy. Acute care hospitals in Quebec must recognize that the provision of acute palliative care by dedicated members of an interdisciplinary team in a dedicated unit is the global gold standard of care. With an aging population and rising incidence of serious illness, the risk of problems like those reported by Simard’s family will grow. We have the expertise to ensure that patients do not suffer. What we need is the accompanying space and human resources in our acute care hospitals to provide this standard of care to people with and without cancer.
Third is a reform to provincial (and national) health policy. The government of Quebec has been forward thinking in its recognition of the need for palliative care, appropriate in the province in which palliative care took its name. It needs to back this up with the human resources to ensure that all patients with serious illness have what they need not to suffer, especially in times of crisis and at the end of life. That is, we need more palliative care physician and nurse specialists, in the community and in hospitals. When a patient’s access to palliative care is determined by prognosis, which has inherent uncertainty, people will not receive timely palliative care. When hospitals and CIUSSSes do not have enough trained staff in the right place at the right time, people will not benefit from what palliative care can provide.
It should be clear to the public, to hospitals and to the health ministry that access to palliative care is part of the right to health care. If you have a serious illness and you do not have access to palliative care, you are not getting the best care possible.
It is shameful that the experience of Simard and her family is not unique, but rather a daily occurrence across the province. We need a change in our understanding of what palliative care is, to whom and when it should be available, and provide the hospital and health system infrastructure required to meet the growing need for our expert services.
The Montreal Gazette publishes Dr. Justin Sanders' text :
