End of Life – How do We Balance Roles?

An interesting look at the difficult balance between the roles of the family and of medical practitioners in end of life decisions.

http://www.thestar.com/news/canada/article/1274426–a-wife-wants-her-husband-kept-alive-at-all-costs

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4 Comments to “End of Life – How do We Balance Roles?”

  1. I acted for the SDM in the case Chris refers to. Anyone wanting a copy of the Consent and Capacity Board ‘Reasons for Decision’ feel free to ask.

  2. I completely disagree with this article. It’s a disgraceful example of shallow journalistic trick where an extreme situation is treated as if it was the norm and alarmist, unsubstantiated conclusions are drawn about how awful things are based on a wildly unbalanced selection of facts and expert opinions.

    We have done thousands of personal directives over the past 8 years. In well over 98% of our documents, the maker chooses to include the statements,

    5.4 If I reach a stage where I am not expected to regain the mental capacity to make my own decisions, I do not want to have my life prolonged at all costs. I do not want treatments that are intended primarily to prolong my life without improving the chances for cure or reversal of my condition. Further, I want my Agent to be able to consent to reductions in the intensity of medical intervention and I want to receive comfort care, including surgery and drugs, to relieve pain and reduce distress.

    and

    5.5 My Agent may refuse, withhold or withdraw treatment to permit my life to come to its end if my Agent determines, after consulting with my physician, and, if feasible, with xxx, that

    5.5.1 my death is imminent if treatment is not commenced or continued,

    5.5.2 there is no reasonable medical expectation of recovery, and

    5.5.3 I have lost the ability to interact with others and have no reasonable chance of regaining that ability.

    These statements provide a structure within which the family works with the medical team to assist the dying person to in a dignified, non-confrontational passage from life consistent with their values.

    Of course, reporters don’t bother writing articles about dignified deaths because they just aren’t as interesting as extreme situations like the one described in the article. But just as hard cases make bad laws, extreme examples make unsubstantiated generalizations.

    The reality is that we don’t have a wide-spread problem with end-of-life decision-making. What we have is a problem with a few religious fanatics who are willing to subject their loved ones (and the medical teams who are trying to support them with appropriate medical care) to years of indignity and with reporters and academics who are willing to be used to emotionally blackmail society into supporting them.

  3. If the “maker” chooses to include those provisions, you’re half way there. I make my clients promise to have a conversation with the Agent about the provisions so the Agent is not surprised and is ’empowered’ to consent to decisions that will end a life. My practice includes advising physicians on conflicts in end of life care and I am astounded at how many agents [in Ontario, known as “Attorneys for Personal Care”] are either astonished to see such a provision and reject it as well as giving consent based upon it, or simply cannot consent to something they think will end the life of a loved one. They are unable to recognize it is the person’s condition that results in death rather than the withdrawal of life support. And, they aren’t all religious fanatics, or religious, or fanatic.

    The other reality is that the majority of people, such as the man in the reported story, do not have any kind of advance directive and have not discussed their end of life views with their loved ones, lawyers or health care providers.

    Dementia is not a sudden thing. The man in the story was diagnosed in early stage dementia when he was still capable, but at the Hearing there was zero evidence that anyone had ever asked him about his wishes, values and beliefs–and that includes a variety of physicians, home care workers, social workers, nurses and hospital staff.

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