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Having the Conversation
The daughter was in turmoil. She called me about her mother, who was suffering from late-stage dementia. She and her two brothers could not agree on whether to put in a feeding tube, as it was becoming impossible to provide adequate nutrition. There had already been two episodes of aspiration pneumonia.
"My two brothers and I are in complete disagreement and I don't know what to do. I can't accept that we can let her die like that."
I asked her what she thought her mother would want under the circumstance.
"We never talked about such things. My brothers and I tried to bring up the topic and she told us it was not something she wanted to discuss. She was a very proud woman and always had a positive view of the world. Talk of illness and dying was just too morbid for her."
I asked: "In the absence of actual discussions, what do you think she would want, knowing what kind of person she was?"
The daughter replied: "She was a tenacious person and always a fighter."
I outlined some of the considerations she should bring to her and her siblings' decision-making process that might reflect their feelings about what mattered to her mother, and then left it for the daughter to discuss them with her siblings.
This discussion occurred a few days after a series of meetings I attended where some of the challenges in long-term care planning by elders with their children was one of the topics of the program. Over and over, those involved in one of the roundtable discussions where various eldercare specialists and planners were gathered came back to the concept of "having the conversation."
We all agreed that there was often an enormous reluctance for loved ones to broach the subject of future planning for living arrangements, financial planning preferences or wishes for end-of-life or serious life-imperiling situations. The question that kept coming up was why there was such a reluctance to explore one's wishes and values when late-stage illness such as dementia or malignant disease might occur.
Many reasons were given by those around the table, including superstition, discomfort in facing negative aspects of life, religious beliefs or one's personality and relationship with those with whom the discussion would have to be held for it to be meaningful.
Some years ago, there was large-scale impetus for people to develop living wills as a way of assuring their wishes would be honored should they no longer be able to make health-care decisions. For some, the process proved useful. For others, it became too complicated or threatening.
From various studies, many eldercare specialists concluded that the written document was not the most important part of the process. Rather it was the conversation that explored wishes and personal values that could form the basis of decisions that reflected what the person was likely to do if he or she could assist in the process.
The daughter called back a few weeks later and told me that she and her siblings had decided against the feeding tube and would allow their mother to receive supportive and palliative care with comfort measures only for her last weeks of life.
"I wish we'd had the conversation," she said. "But I believe this is what our mother would have wanted."
Try to have that important conversation with your loved ones so that decisions can be made during the last period of your life that reflect your wishes and values.
Dr. Michael Gordon is medical program director of palliative care at Baycrest and author of Moments that Matter: Cases in Ethical Eldercare. This and his previous book, Brooklyn Beginnings: A Geriatrician's Odyssey, can be researched from his website: http://www.drmichaelgordon.com.
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