Let’s speak less of death and more about care

Discussion about ‘end-of-life’ issues creates an illusion of choice and avoids taking responsibility for the care of chronic cases.

By: Tom Koch, Toronto Star - Tue Jul 2, 2013, Link to the Toronto Star article.

When all three major political parties and the Toronto Star agree, I get … worried.

Tom Koch

I read the Star’s June 24 editorial, “Time to talk about death,” while worrying over the care of “Margo,” a 102-year-old woman in hospital following a fall. Her family asked me to consult on her care. Her case, like many others I’ve dealt with, is not about “end-of-life” but rather the care and preservation of “fragile life.” As an ethicist and gerontologist specializing in chronic conditions and progressive disease, I get this kind of case frequently.

We know Margo will not live to be 122 years of age but she is not going to die tomorrow. At present, she needs treatment for a range of conditions and then a skilled-nursing facility because her mobility limits mean she can no longer live in a simple “assisted-living” facility.

The hospital social workers want Margo moved out of the hospital — it is policy to move them out quickly — but there are no suitable accommodations available. They tried to pressure the family and I counselled them to refuse a transfer until an appropriate facility could be found. In the interim, she is receiving minimal but adequate treatment — the truth is, she is 102 years old and nobody cares overmuch.

And so, reading Premier Kathleen Wynne’s insistence we need a good “discussion” like Quebec’s on “end of life,” I got concerned.

“End of life” is the polite code for “ending life,” either through the withdrawal of life-prolonging treatment or physician-assisted (or directed) termination. It is not about the compassion required for chronic cases like Margo’s but about creating a structure that permits those cases to be inexpensively and safely ended.

Perram House closed this year.

That, of course, would be good news for the government, whose funding of care centres, nursing homes, home support and hospice and palliative services is lamentably inadequate. We know this from the waiting lists for skilled-nursing facilities and the failure of hospices like Perram House, which closed earlier this year because of funding problems. The province expects hospices to raise operating capital as a charity rather than be fully funded by the government. Perram House couldn’t do that.

“The end of life is messy,” NDP health critic France Géinas said in her support of Wynne’s call for a discussion. It’s not, however. The end of life is pretty clear and very simple: the heart stops beating and respiration ceases.

Life for the fragile, however, is a different matter. It involves a range of issues, an array of specialties and sometimes also special facilities. The result will not bring a person back to health — Margo will never dance and skip or hold a job — but will give them the best possible life they can live.

Margo is free to refuse care; she is free to say, “Let it happen.” But, like most in her situation, while she’s not sure she wants next year, she has made it clear she’d like tomorrow if her basic conditions can be stabilized. Her family wants that for her, too, and a place where she can live out her life in safety and maximum comfort.

This isn’t about age, however. While most frame these discussions in talk of seniors, the issue of fragile life versus a quickened death is not age-restricted. In my career, the same issues have returned — again and again — with post-stroke persons with paralysis, spinal injury patients, those who have had serious traumatic brain injuries, and patients with neurological conditions like multiple sclerosis.

All these are classes of persons who are in dire need of continuing care, rehabilitation, and either more extensive home services or better institutional service. Usually they need the institutions until they can cope with home service. And these are the areas where the provincial health service (and, to be fair, those of most other provinces) fails utterly.

Instead of providing care we have created vast layers of bureaucracy to “manage” the limits of the care we have. That’s what comes from “discussions,” rather than the plain facts of patients in need of services they often do not get.

If it is “time to talk about death,” it will not include talk about life and its fragile continuance. It never does in these cases. It will trumpet “humane” termination and “end of life” plans, which might give the illusion of choice. But I know, from experience, that what folks say in health is typically not what they want in medical extremes.

So let’s put off “death talk” and think about “care talk,” about what the fragile of our society need and how better to provide it. Let’s not “discuss” the “compassionate motives” of Quebec’s euthanasia bill (called “end of life”) and instead talk about “life care, even for the fragile.”

That’s a discussion worth joining in an area where we need to do much, much better.

Tom Koch is an ethicist and gerontologist specializing in chronic and palliative care. His most recent book is Thieves of Virtue: When Bioethics Stole Medicine.