By Julie M. Robillard and Judy Illes, Vancouver Sun
The recent incident involving a dementia patient who received anti-psychotic medication against her family's wishes highlights the urgent need to focus on the changing health care landscape and the ethical concerns it raises.
Hilda Penner was given Loxapine, an anti-psychotic that is not approved for treating dementia, after the nursing staff at a Fraser Valley care home requested it from the attending physician because she was agitated. This occurred even though her daughter, Doreen Bodnar, had specifically requested that her mother not be given antipsychotics, which had caused her adverse effects in the past. A report suggests that these medications may have contributed to a major seizure Penner suffered. (The 83-year-old died in November of natural causes.)
This event illustrates many of the challenges in caring for patients with dementia: Penner's inability to give consent to treatment with antipsychotics, the knowledge of, respect for and weight of her daughter's decision-making, the limited treatment options for the disease, the balance of risks and benefits of different types of treatment, and the lack of resources to bridge the gap between patients, caregivers and health care providers.
Penner's case is not isolated. Across Canada, stories are emerging about the difficulties of dealing with patients with dementia. Just last month, in Scarborough, Ont., a woman with Alzheimer's disease wandered outside and froze to death near her home. Her cries for help were ignored. In this instance and in many others, the network of care for patients with dementia must be extended past the main health care provider, the health care corridor and the nuclear family.
Canadians must become aware of age-associated conditions and be provided with tools to respond to the needs of the aging population. This represents a considerable task, and we must tackle the challenges earlier than later.
The issues and concerns raised by these two recent cases are not new, but they are growing: By 2030, it is estimated that one in five Canadians will be over the age of 65. Alzheimer's disease, the No. 1 public health problem in the developed world, is estimated to cost $50 million per day in Canada. In the time it takes to read this commentary, two more Canadians will be diagnosed with Alzheimer's.
The aging population, combined with an increased prevalence of dementia, poses difficult challenges for an already over-burdened health care system. Issues surrounding consent, decision-making, end-of-life care and autonomy will intermingle more than ever with health care delivery. Communication between patients, caregivers and health care providers will need to be valued and streamlined. Tensions will have to be resolved in ways that respect the wishes of caregivers and providers
There will never be an easy solution to the difficult problem of deciding when to protect an individual's or surrogate's wish over protecting others and society. Physicians and government agencies will have to rely on strong research about brain health and disease to maintain standards of care that are in everyone's best interests.
The public will need to be better informed about age-associated diseases and conditions. And while all these challenges will require a healthy dose of insight informed by evidence-based ethical guidelines, ethics resources across the Lower Mainland's health care delivery systems continue to dwindle. The direction of this trend is the opposite of what it should be.
Wheels of change are already in motion but they are not all turning the same way. Waiting until there is another tragic event does not meet the standards of care and fairness that Canadians deserve and expect. More ethics resources, better communication strategies, and policies that are directly responsive to the aging dynamic are urgently needed.
Judy Illes is professor of neurology and Canada Research Chair in Neuroethics at the University of British Columbia and director of the National Core for Neuroethics. Julie M. Robillard is a postdoctoral fellow at the Core.