Representation Agreements: Whose life is it anyway?
It has been a recent concern among Lawyers whether Representation Agreements are being followed in hospitals and care facilities.
In B.C., Representation Agreements are like Powers of Attorney for health care. You appoint a person in writing to act for you to make health care decisions when you no longer can. The Agreement can cover a broad range of health care decisions and, perhaps most important, can include the Living Will clause.
This clause says, in so many words, that if you are ever in a state where you are being supported by machines, and the doctors do not believe you will recover, you want the machines turned off.
As more and more people become aware of Representation Agreements, more want them.
Without being critical, I do not know at what stage the medical community is with Representation Agreements. Many doctors and nurses are probably aware of them, but many have limited exposure to them because not that many people/patients have made them.
That presents a potential problem, and I have told many people over the last few years that it is up to the appointed Representative in the Agreement, or the family, to make sure the medical staff (including the doctors and nurses) are aware of the Agreement and whom to contact if something arises.
Recently, the results of a Canadian medical study were released in this area. (One of the doctors was interviewed on CBC Radio and an article was published in the National Post.)
The study itself was connected with the type of care given to elderly, seriously ill patients. More than 800 patients (most over 80, and about half had a serious illness including end stage dementia) were interviewed and more than 600 family members were spoken to. The study covered 16 hospitals across Canada.
It appears that, for many of those patients (at least one-third), the care was not what they wanted and not what they signed up for.
Many end up getting Cardiopulmonary Resuscitation. What is significant is that not only do people get it, but it is not what they want, and family members who end up seeing it may have extreme reactions.
There is the cost aspect as well. This kind of treatment is costly to our system and is also a stressful way to die for the family and the patient.
The study also found that, for some people who did want CPR, their charts indicated otherwise.
The important, positive aspect of the study is that the topic is getting more attention than ever before in hospitals and care facilities. But apparently, there is still a lot being left unsaid.
The time seems to have come for Representatives (appointed under the agreements) to step forward and be similarly aggressive in pointing out to staff what the patient wants and does not want.
In the study, it appears that most patients and family members had not told medical staff of their preferences, and when asked why, the typical response was: “They haven’t asked me.”
One answer may come from the founder of the Patients Canada Advocacy Group, Mr. Sholom Glouberman. He believes that physicians are open to the dialogue but stuck in the doctor-knows-best mentality.
The long tradition of not working with families is still very, very deep.
As the population of retired and aging people grows across the country, this issue will become common if it isn’t already. More adult children of aging Canadians will be looking after them, and may be reluctant to consider the issue of when to stop life-sustaining treatment.
Having been through the ordeal of having a parent in the hospital system, and knowing how busy medical staff are and how fast everything tends to happen, I repeat my opinion that it is the family’s obligation to make sure the medical staff know whom to contact if there is a need, and what kind of treatment will be wanted in the event of a catastrophic event.
In other words, if there is a Representation Agreement, make sure the medical staff know of it!
In addition, in my view, given the cost pressures we face now in our health care system, I expect that in the coming years more choice will be given to families and older patients (with capacity) to allow them to have the plugs pulled on life-supporting machinery.
This column ran in the Richmond News on November 27, 2015.