She confirmed something I knew: how difficult it is in Israel to discontinue a feeding tube, even if the substitute decision-maker felt it was indicated and it was supported by a living will.
Most Canadian health professionals realize that our laws allow for such a move but also recognize its emotional impact: it results in more personal and professional conflicts than a decision to not insert a tube at the outset.
A National Post article, “New Brunswick hospitals latest to offer patients expanded end-of-life care options” (Nov. 8, 2012), focuses on an initiative to offer patients more choices about their end-of life-care, beyond the standard “do or do not resuscitate” policies that often don’t address other important issues such as artificial nutrition and hydration (feeding tubes).
A New York Times editorial, “Care at the end of life (Nov. 24, 2012), said that with good advance care, “there is good evidence that… it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.”
Advance-care planning is not new. There have been strong Canadian proponents of the “living will,” a written document used for stating one’s wishes and values for end-of-life care. Verbal instructions are also legally valid but harder to “prove.” In Ontario, living wills are supported legislatively through the Health Care Consent Act, 1996.
According to the Times editorial, “many people sign living wills that specify the care they want as death nears, and powers of attorney that authorize relatives or trusted surrogates to make decisions if they become incapacitated.”
A nationwide American project, Physician Orders for Life-Sustaining Treatment endeavours to ensure patients’ wishes are followed and are not too vague for family members so that they are sure what a comatose patient would want.
The Times article states: “With these physician orders, the doctor, or in some states, a nurse practitioner or physician assistant, leads conversations with patients, family members and surrogates to determine whether a patient with advanced illness wants aggressive life-sustaining treatment, a limited intervention or simply palliative or hospice care.”
With the transition toward more patient choices about end-of-life care beyond “do or do not rescusitate,” a cautionary note must be raised. One has to avoid the risk of developing a “quick and cheap fix” – that is, relying on simple forms in which people select from a menu of categories of choices for their final phase of care. This process is likely to be too minimalist to capture the nuances and emotional complexities of expressing end-of-life wishes. My sense, after many years of such involvement, is that the most important part of the process is not a “form” that is filled out, but having the conversation in a robust manner with those who will be responsible for respecting your values and wishes and interpreting the potential treatments offered when you cannot.
Pre-planning one’s future is never easy and can lead to unexpected and unwanted consequences if not done carefully. This personal responsibility must be supported by strong commitment through public policy that promotes education and training of those who ultimately will be responsible for this very human undertaking.
Dr. Michael Gordon is medical program director of palliative care at Baycrest. His latest book is Late-Stage Dementia, Promoting Comfort, Compassion and Care. His previous book, Moments that Matter: Cases in Ethical Eldercare, follows his memoir, Brooklyn Beginnings: A Geriatrician’s Odyssey. All can be researched at his website: http://www.drmichaelgordon.com.
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