Executive Director - Euthanasia Prevention Coalition
Days before the decision of the Ontario Appeals court in the Rasouli case, the Journal of the Canadian Medical Association has published an important article that is written by Lauren Vogel concerning health care rationing. The article titled: Can rationing possibly be rational? looks at the issues related to the rationing of medical treatment and considers these decisions within the paradigm of the life experience of people.
The article begins by telling the important story of Annie Farlow. The article states:
Annie Farlow was just short of three months old when she died in an Ontario hospital of what her parents believe might have been a treatable respiratory condition.
Born with the chromosome disorder Trisomy 13, Annie had little chance of surviving to her teens, but her parents, Barbara and Tim Farlow, had taken comfort in the hospital’s assurance that their daughter’s genetic disorder, also known as Patau syndrome, wouldn’t preclude her from receiving the same level of care as any other child suffering from a medical condition.
But months after Annie’s death, the Farlows discovered that physicians at the hospital had not initiated emergency resuscitation measures in their daughter's case with the same alacrity as they would in others. They also found out that a physician had placed a “do not resuscitate” order on Annie’s chart before obtaining their consent, and subsequently their daughter had been administered an undisclosed quantity of narcotics that, in the Farlows' opinion, could have caused her "unexplained, rapid" decline.
The circumstances surrounding Annie’s death have left the Farlows asking age-old questions that plague Canadian patient advocates, health care professionals, ethicists and policy makers in the face of growing health care resource scarcity: When is it appropriate to limit or withdraw potentially beneficial treatment? Who should make those decisions? How should decisions be made?
|Tim & Barbara Farlow|
“I never took the position that my daughter had a right to any and all treatments, but the unilateral decisions we believe the doctors made should have been made transparently. We have a right to know and appeal the limits of the system, and be provided with whatever care is possible within its confines. Not only do I believe my daughter was denied a chance to prolong her life, the secrecy in which decisions seem to have been made also meant she was denied timely palliative care, and she suffered greatly at the end.”The article then considers the context that health care rationing decisions are being made. The article states:
Health expenditures consume more than 50% of revenues in six of Canada’s 10 provinces, not including federal transfers, and are on pace to consume some 75% of revenues in five provinces by the year 2019, according to the Fraser Institute (www.fraserinstitute.org/WorkArea/DownloadAsset.aspx?id=3411).Krista Flint, a disability rights leader from Calgary acknowledges that health care rationing already exists for people with disabilities. She states:
Canada’s aging population and the ongoing development of expensive therapies for life-threatening illnesses are further escalating pressures on the health care system, particularly intensive care units. Surveys estimate that Ontario, among other provinces, will need 80%–93% more intensive beds over the next 20 years, while about 87% of intensive care physicians indicated they had provided “futile” care at least once in the previous year (http://www.cmaj.ca/cgi/content/abstract/177/10/1201?ijkey=90110ebfb38e9dc79c26cfd0ffc266868702b7d4&keytype2=tf_ipsecsha).
“It’s evidenced in things like the exclusion criteria built into new provincial pandemic planning protocols. In the case of a flu pandemic, for example, having a developmental disability now excludes you from access to a ventilator.”The article then overstates the current legal position by quoting Dr. Laura Hawryluck who stated:
Such protocols set a precedent for withholding and withdrawing beneficial treatment from vulnerable groups, she argues.
Under Canadian law, doctors do not have to provide treatment that they deem “futile." However, without clear consensus about what constitutes futility, clinicians have no clear standard for weighing medical versus nonmedical criteria in their decision making.Hawryluck then defines futility in this manner:
“the use of considerable resources without a reasonable hope that the patient would recover to a state of relative independence or be interactive with their environment.”Rhonda Wiebe, cochair of the Council of Canadians with Disabilities end-of-life ethics committee responds to Hawryluck by stating:
“These are really existential questions about judging quality of life. I worry we’ll get to a place where we’re the sum of our illnesses. I know that if there’s one respirator and two people, one who will need it for 12 hours and the other who will need it for the rest of their life, there’s a split second allocation decision that’s going to be made, and likely in the favour of the healthier person.”Mark Handelman, a lawyer who specializes in end-of-life disputes commented:
Patients, families or surrogate decision-makers who disagree with a physician are “left with no other alternative than to go to court to get an injunction to prevent discontinuing treatment,” while few cases make it to trial because most patients die before their case can be heard. There are also considerable legal ambiguities surrounding end-of-life decision-making authority (http://www.cmaj.ca/cgi/rapidpdf/cmaj.109-3910v1?ijkey=a403461783dbd673b2c74c59d3936e3e21ac292a&keytype2=tf_ipsecsha).Margaret Sommerville, founding director of the McGill University Centre for Medicine, Ethics and Law, in Montreal, commented on the role of physicians in health care rationing. She stated:
Some 80% of resource allocation decisions are currently made by physicians at the bedside, effectively putting physicians in the role of “double agents,”Sommerville then states.
“There’s a clear ethical rule that a doctor has a primary obligation of personal care for each patient, meaning a doctor cannot put the interests of a group, society or another patient in front of the best interests of the patient he or she is treating.”
“At an institutional level, hospitals and health authorities have an obligation to take into account other people’s requirements, rights and needs, and can put efficiency ahead of any one patient in ways a doctor cannot.”The article ends by quoting Barb Farlow who states:
“No one wants to be seen as the person that started the conversation on who we exclude from universal health care. But we’re already excluding people like my daughter in other subtle ways, so the time to talk is now.”The Euthanasia Prevention Coalition recognizes that health care rationing decisions will be made by some means in the near future. Decisions for rationing health care should not be made based on a theory that views people as futile rather than treatments as futile.
We are also concerned that society will be sold the concept of euthanasia based on the need to save money. Under this kind of a regime, death would become the silent tool that is used by a government that is oriented to health care cost containment.