GeriPal recently conducted a poll to ask readers if they would take a pill to add 500 years to their lives. The question of quality versus quantity was raised – would extending one’s longevity with a compromise to quality of life be worth it?
I recently came across an article that addressed this issue on both sides. In Ontario, Canada, the provincial Consent and Capacity Board is reviewing a dispute over Desmond Watson's life. The 87-year-old suffers from advanced dementia and was admitted to the hospital 14-months ago with pneumonia.
- According to the doctors, treatment should cease because “Desmond is suffering without any prospect of long-term improvement.”
- According to the wife, “People look at him as a vegetable. But he isn’t. He’s a person with dignity. Don’t take that away from him.”
Who is “right” and what will be the outcome of this ethical conflict? This is an end-of-life question that Canada has not yet established "clear provincial, federal or medical protocols" to enable doctors and the family to answer, begging the questions:
- When it comes to end-of-life care, do the values and beliefs of the patient and his family trump the obligation of the doctor – whether professional or moral or both – to end suffering?
- What end-of-life protocol(s) could Canada implement to facilitate the resolution of this conflict?
- Desmond Watson's pneumonia cleared and he is breathing independent of a ventilator - does/should this have any bearing on how the dispute should be resolved?
Please share your thoughts in the comments section.
by: Julie N. Thai
Comments
As a Director of Nursing in a Skilled Nursing Facility in the US, I hope that I die prior to having dementia, and have made my wishes very clear to my family on the subject. I have no wish to go through the indignities of those with dementia, even though I protect the rights of those who wish to do so. No 500 year pill for me, thanks!
Regarding the initial question posed by Julie Thai, when it comes to end-of-life care, I believe the values of the patient and family will, and should, usually trump those of the healthcare 'professional' -until/unless we have a system that explicitly requires rationing. Canada is way closer to this than we are here in the US. The one exception I would make to this is if "Desmond" were really suffering, say pain, and the family was refusing to allow medication which could successfully treat the problem. But, that doesn't seem to be what's happening in this case...
It could be argued that some clinicians do feel an obligation to end suffering - by completely eliminating symptoms, for example - but the phrase "end suffering" easily lends itself to arguments about euthanasia and physician-assisted suicide. I'm not sure that's the conversation we're having here. Or is it?
What's interesting in this case is that it seems clear that if Mr. Watson's wife had allowed the patient to be transferred to a LTC facility, the question of continuing "life-saving" treatment might never have come up. Many vented patients are housed in sub-acute facilities for years on end and the ethics of such care are seldom questioned. The dispute about withdrawing ventilator support is now moot but it doesn't mean that the issue is resolved. When Mr. Watson is transferred to a SNF and develops aspiration pneumonia - both are almost inevitable - will he be treated with IV antibiotics or not? How will other complications be dealt with?
The other salient point here is that neither the physician nor the nurse who brought this case to the attention of the ombudsperson were able to say that they knew what Mr. Watson's wishes were. We need to be able to say that we've had that conversation with our patients because the goals of the patient and family are the essence of palliative care - any appeal to ethics or morality lacking that foundation is bound to fail.
Now that the patient is off the ventilator, there is an opportunity to refocus the discussion on a deeper understanding of the patient's values and goals, possibly leading to a more nuanced consideration of his overall interests. Ideally, this MIGHT lead to a "non-escalation" decision. Because there is more trouble around the bend for this guy.
Coincidentally, results of a telephone survey of over 9,300 people from seven European countries about their end-of-life priorities were presented March 24 by PRISMA at their symposium in Belgium.
Funded by the European Union, PRISMA is a research collaborative of palliative care experts from across Europe and Africa as well as palliative care leaders from EAPC, APCA and WHO. It is led by King’s Collage London as part of a "three-year action project" aimed at identifying priorities for palliative care research and practices.
The 9,344 survey participants were asked five questions regarding their priorities if faced with a life-limiting illness and a prognosis of one year.
No spoiler alert here. Pour yourself a cup of coffee and prepare to be intrigued.
PRISMA Telephone Survey: EOL Priorities (go to bottom of page)
Despite survey shortcomings, this kind of straightforward information can be powerful and provocative in discussions with our non-medical lawmakers, clergy, peers, and children.
As for Mr. Watson: I offer that his essence, his personhood, his history, his hopes, and his laughter have been stolen by dementia. But we don't know about his dignity. We have only the word of Mrs. Watson; she is his advance directive. If Mr. Watson’s ‘suffering’ can be eased, are not the issues of beneficence and non-malevolence null?
Are they arguing resource allocation? And is there a more difficult topic than that - - to debate who is 'more worthy'?
The only thing I know for sure is that everyone involved in his care has suffered.
Coincidentally, results of a telephone survey of over 9,300 people from seven European countries about their end-of-life priorities were presented March 24 by PRISMA at their symposium in Belgium.
Funded by the European Union, PRISMA is a research collaborative of palliative care experts from across Europe and Africa as well as palliative care leaders from EAPC, APCA and WHO. It is led by King’s College London as part of a ‘three-year action project’ aimed at identifying priorities for palliative care research and practices.
A total of 9,344 survey participants were asked five questions regarding their priorities if faced with a life-limiting illness and a prognosis of one year. No spoiler alert here. Pour yourself a cup of coffee and prepare to be intrigued.
PRISMA Telephone Survey: EOL Priorities (go to bottom of page)
Despite survey shortcomings, this kind of straightforward information can be powerful and provocative in discussions with our non-medical lawmakers, clergy, peers, and children.
As for Mr. Watson, I offer this: his essence, his personhood, his history, his fatherhood, and his laughter have been stolen by dementia. We have only the word of Mrs. Watson; she is his advance directive. If Mr. Watson’s ‘suffering’ can be eased, the issues of beneficence and non-malevolence are null. Are they arguing resource allocation? Is that not a discussion we shun. . . who is ever more ‘worthy’?
Has Mr. Watson has 'suffered'? The only thing I know for sure is that everyone involved is his care has, indeed, done just that.
What if "my wishes" are to have a lung transplant because I am a former smoker. It's absurd. Following a person's wishes that conflict with medical judgment is also absurd.