Are you sure your Representation Agreement says what you want?
In 2011, after years of consultation and consideration, our Provincial Government proclaimed new legislation, in connection with Adult Guardianship. The Power of Attorney and the Representation Agreement were, let me say, formally changed. The Power of Attorney, as we know it today, is strictly for the management of financial affairs of a person. Meanwhile, the Representation Agreement is made only for the management of a person’s health care (including their “end of life” preferences and management).
More and more people are making Representation Agreements, owing partly to a greater awareness among British Columbians of the availability of Representation Agreements as a means of assisting in the management of their care.
However, while it may well be easy to tell a Lawyer what you want in a Representation Agreement, it is quite another question what may happen when the time comes to actually rely on what is stated in the Agreement. It is worthy of a deeper look.
Dr. Daniela J. Lamas is a critical care Physician in Boston. She is also a really incisive writer on medical issues. Earlier this month, she wrote (in the New York Times) an article, addressing the complexity of the management of a person’s health care.
A patient of Dr. Lamas’ made an “Advance Directive” (which is fairly similar to a Representation Agreement here).
Her patient had, for years, warned her family that she did not ever want to be intubated (she’d had that experience as a child and was determined never to have to go through that ever again). In her Advance Directive, made a few years ago, she stated that she did not want a breathing tube. In her late 60’s now, she recently contracted pneumonia and was brought in to emergency, struggling to breathe.
The Doctors called her Husband and asked whether to intubate. The Husband hesitated! He was not able to put it to his wife, in the situation, so he told the medical staff to intubate. She was and then was moved into intensive care.
Dr. Lamas, at her patient’s bedside, mumbled an apology. She knew this is not what the patient had wanted.
After a few days, the medical team at the Hospital met with the patient’s family, looking to make a plan. The medical team would try to treat the pneumonia, and get her off the breathing tube. The family seemed to accept that plan..
The breathing tube was eventually removed but a few days later, the patient was intubated again and a tracheotomy (a procedure where a hole is cut in a person’s throat area, in order to ease the breathing process) was performed. The patient spent a month in a struggle. It was about the opposite of what was expressed in the patient’s Advance Directive.
With this particular patient, I have to presume that her family may have felt she was too young to “want to die”, despite the Advance Directive expressing that very wish. Regardless, the concern remains. Why did the family not comply with the wishes expressed after the person went through the trouble to make an Advance Directive?
Is there something wrong with the “system”?
In B.C., in my opinion, Representation Agreements are still “new”. I have had experience where medical staff allowed medical decisions to be made under a Power of Attorney. There may be practical reasons for this but that kind of step does not really comply with the law. There has simply not been enough time nor exposure to these documents for treating professionals to become more accustomed.
I expect that in some instances, medical staff may not have time to inquire whether a person in Emergency has even made an Agreement. That is a current problem.
I have also heard of instances where staff have not complied with Representation Agreements and have made medical decisions on their own, including where the appointed persons could not be reached..
An article in the Journal of the American Medical Association, by Dr. R. Sean Morrison (a Palliative care specialist), in which he reviewed more than 60 recent studies, concluded that even with advance care planning having been done, the documents had no impact on whether the patients received the care they wanted.
A practical issue, here, is whether the document made was in the patient’s chart or whether the medical staff otherwise knew of it having been made.
More important than this, however, is the critical point Dr. Lamas makes in her article:
“…the bigger obstacle, and what has increasingly troubled me working in the intensive care unit, is the difficulty of asking people to make decisions about future scenarios. … It is easy for people to say that they would rather die than live with significant limitations, pain or dependence on others. But people evolve in ways they cannot expect. This is why some survivors of catastrophic accidents, come to rate their quality of life as good – even if they never would have imagined being able to do so before the accident. As a result, what people are willing to go through to extend their life might change depending on the context. Advance directives (here, in B.C., Representation Agreements) written at one point in time about hypothetical scenarios cannot capture what someone actually wants at every point in the future”.
Dr. Lamas feels that people need to choose the right Representative, and have the full conversations with that Representative about their wishes.
I agree. It is not easy to choose a Representative. It may be a spouse, an adult child, a sibling or a friend. Because the chosen representative may one day need to tell a medical staff person to take the extreme step, that representative needs to be the best person for the job (and be willing to make sure it is enforced) !