MGordon_MD
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May 29, 2007, 9:36 AM
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By Dr. Michael Gordon
It was another call about a family conflict with the health care team.
A daughter was saying, “I want my mother to get all treatments available, no matter what you think. She is my mother and since I am her substitute decision maker [SDM], I am legally in charge.”
The staff asked me and my ethicist colleague to intervene, because they thought the daughter’s treatment requests were unreasonable, and it wasn’t clear whether they were what the mother would have wanted had she been able to express herself.
Why would health care professionals feel that way about the request of a daughter acting as an SDM? Did the staff know something about what was best for the patient that the daughter didn’t, or was the daughter requesting medical interventions that were excessive under the circumstances?
A team meeting with the ethicist revealed that some time in the past, another daughter who was not the SDM indicated to the unit’s social worker that her mother would never have wanted to be kept alive with a feeding tube in a state of semi-consciousness. This comment was made some months after a feeding tube had been inserted at the request of the SDM daughter because of inadequate nutritional intake.
The staff, during their discussions with the SDM daughter, assumed that she was making the feeding tube decision based on her mother’s wishes and values. It was only after the second daughter, who was estranged from her sister, suggested that the SDM daughter was not acting properly that the staff became concerned about the SDM daughter’s decisions.
The health care team arranged a meeting with the SDM daughter and asked her how she came to her decision about her mother’s feeding tube. She bristled at the question and answered, “I am not sure what my mother would have wanted. She was a very proud person and valued life to the fullest."
She explained that her mother was upset that her sister – the SDM daughter’s aunt – had languished in a hospital in Montreal for a few years with a feeding tube. But she did not say for sure that her mother would never want this for herself – at least not specifically. "We didn’t talk about such dreadful things.”
At the follow-up team meeting with the two ethicists, the SDM daughter’s primary concern appeared to be about the potential threat to her decision-making capacity. She asserted that she “was in charge” and that if we challenged her, she would “take legal action” and make sure she got her “rightful and legal way.”
The question for the whole team was whether it was worth challenging the SDM daughter’s decisions because of their doubts that she was acting as her mother would have wanted. The basis of the SDM daughter’s decisions was not completely clear, and the issue was clouded and confounded by the estrangement of the sisters.
SDMs must know that their legal mandate is to make decisions that represent the person for whom they are acting, not as they, the SDMs, wish.
The legal basis is what the SDM believes to be what the person would have wanted if they could express themselves. This could be based on written directives (advance directives or living wills) or discussions in which the topic was addressed.
If an SDM is acting otherwise, health care professionals can challenge his or her role through mechanisms such as Ontario’s Consent and Capacity Board and can request to have the person removed from their decision-making role.
SDMs must be certain that they are acting properly, for the sake of the person they are representing, and also that they legally fulfill the requirements of a role that is considered a most honourable and important one.
This article was originally published in the Canadian Jewish News.
Dr. Michael Gordon, is vice-president of medical services at Baycrest in Toronto, Canada, and co-author with Bart Mindszenthy of Parenting Your Parents.
Parenting Your Parents is available in bookstores and online at: Indigo-Chapters, Amazon and Barnes & Noble.
For bulk orders email info@dundurn.com. Call: 416-214-5544 or Fax: 416-214-5556
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(This post was edited by MGordon_MD on Sep 24, 2007, 1:36 PM)
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