A Raincoat for Grief

Two weeks ago, I took my usual Saturday trip to Halifax to see my sister.

I leave my home at 5:30 in the morning. I board a plane. I arrive in a city 1600 kilometres from home. I drive to a nursing home and spend the day with my sister, listening to her talking about her life, listening to her talking about her death. Then I travel backward and, at the end of the day, I am home in time for dinner.

I have cornered my grief into one day of the week. I get up in my own bed and then sleep the same day in the my own bed as if it has just been a long day. I am managing. My sister is always happy to see me. I am managing.

Except…except that, I am beginning to feel reality sitting next to me on the journey. I know this because two weeks ago, I took my raincoat with me. The forecast was for rain at home in Ottawa and for rain in Halifax. I might need a raincoat. I might need a raincoat even though I am dropped off and picked up under the plexiglass awning of the Ottawa airport. I might need a raincoat even though I never have to leave the airport building to get a car in Halifax. I walk 50 metres from the car into the nursing home. I come back the same way.

But I am travelling 1600 kilometres from home. It will likely rain in both cities. I need a raincoat.

For the past year, I have visited my sister at least every month and she is dying. She gets weaker every time I see her. She is getting more tired, and more and more often she talks of dying. I bring books to read that she loves, I send flowers – she loves to get flowers – and I bring her favourite cookies and scones. I am managing.

But this Saturday when I see her, my sister is crying. She talks to me about dying. Cookies and stories and flowers do not help. I put my raincoat in her closet in her room.

The grief is escaping from its corner. All the raincoat can protect me from is rain. I hold my weeping sister in my arms. I pray that she is managing.

At the end of the day, I walk the 50 metres to the car with my raincoat over my arm. The rain is pouring as my plane approaches Ottawa. I might need my raincoat.
I am managing.

(Note: I have developed this post with the assistance of writing group participants at #HarvardWriters2018. They have been an inspiration to me and I hope that this post captures some of their advice.)

Book Review: How We Die

Dr. Sherwin Nuland, an American Surgeon who worked at Yale University, wrote one for the best books on death in our own era. How We Die: Reflections on Life’s Final Chapter was published in 1993 and is Nuland’s Socratic consideration on a subject which we must all contemplate sooner or later.

Nuland considers this phase of life from the perspective of people dying from conditions as diverse as cancer and murder. What is most remarkable about this book on dying, as compared with many others, is that Nuland sought the advice of experts for each of the examples he uses in the book. This opens up the book as a resource to those of us in Canada contemplating what medical aid in dying will mean for us, first and foremost as persons who might use this resource, but also as health care providers. Health Care Providers have faced medical aid in dying with much trepidation since it goes many of our natural inclinations. As a member of the Canadian Council of Academies’ Expert Panel on Medical Aid in Dying, I have wanted to remind myself of the role and place of death in our lives and Nuland’s book has helped me to do this more than any other resource.

Of all the stories in this book, I was most moved by Nuland’s account of the death of his brother from cancer. My own sister is dying – I have been writing about this in my blog – and so I can truly relate to Nuland’s struggle. It is a lesson we must all remember, those of us who work in health care: “Where my own brother was concerned, I had forgotten, or at least forsaken, the lessons learned from decades of experience.” (Page 231) This is exactly the reason we should never try to care for a family member or a close friend.
Reading this book, with its extensive research and focus on what experts in various disciplines and patients have to say, is a reminder that Nuland is a life long learner. His inquiring mind and dedication to ongoing self-improvement is an example to all physicians that you can never know too much. This has been Nuland’s greatest lesson in all his work: always keep learning.

This was not Nuland’s own lesson. It is one of the original lessons of Maimonedes, and can be found in the physician/philosopher’s prayer:
“Let me be contented in everything except in the great science of my profession. Never allow the thought to arise in me that I have attained to sufficient knowledge, but vouchsafe to me the strength, the leisure and the ambition ever to extend my knowledge.”

(Note: References are from the 1995 Random House Vintage Book’s edition of How We Die: Reflections on Life’s Final Chapter.)

Red Sky in the Morning

Yesterday I travelled to Nova Scotia to visit my sister. I took an early flight that travelled into the sunrise and I could not help but notice that the sky was red, and I remembered the second half of the old rhyme:” Red sky in the morning, sailor’s warning.”

When I greeted her, my sister needed to be reminded who I am, although she began a conversation about her health readily enough. “I’ve got anemia now. They’re considering giving me a blood transfusion and I’m not sure I see the point.” She paused. She gave me a sidelong glance and said, “Just because I didn’t remember your name right away doesn’t mean I’m incompetent, and if you begin to think I am incompetent, don’t say anything.” I was contemplating what the link is between memory and competence when my sister added, “They don’t put enough items on those advance directives,” she said, “I have to consider every single, possible situation that might come up.”

“Such as?” I asked.

“Well,” she said, “I first said yes to the blood transfusion and then found out that I’d have to go to the hospital for this. I still can’t figure out why. I could probably still set it up myself. I forget stuff, but I haven’t forgotten much nursing. They drill everything you need to know into you forever. I don’t want to go to the hospital. I’ll just deal with the weakness. Once they take you to the hospital, you can’t be sure you’ll get away. I remember that too.”

What does memory have to do with competence, if anything? When memory is unrelated to understanding a medical situation, it likely has nothing to do with competence, but I am going to have to think about this. I assess the capacity of patients to make their own decisions on many days at work, but my patients rarely have memory problems.

Being with my sister in this period close to her death has really driven me to contemplate how I’ll ensure that my wishes are followed when I am at the end of my life and may not be able to discuss or assess these decisions for myself. I am such a control freak that I can see these situations being a cause of great distress, and my admiration for my palliative care colleagues intensifies once again. I can imagine families in which each sibling believes their parent would want completely opposite measures to be taken – I know some of these families already.

The statistics regarding what most of us would like at the end of our lives versus what does happens are at odds. Most of us would like to die at home, but most of us are brought to hospital. What needs to be done to change this outcome? Most of us are brought to hospital when it is no longer possible to keep us comfortable at home and I suspect that my sister is correct. It’s not possible to contemplate beforehand every situation that might need to be in an advance directive to ensure that your wishes are faithfully followed.

My flights to and from Halifax were trouble-free. The weather was fine in both places all day. The warning was for a more ominous situation than weather, and I’m not sure what steps to take while I am still competent.

Take warning.

Guest Blog: Dr. Cargill and Dan’s Law

For the past nine months, I have been visiting my sister who is dying in Nova Scotia. This experience has truly sensitized me to the needs of those who need palliative care, and I now appreciate how much I will want to be able to control how and where my life ends. But this is not always possible, as Palliative Care physician Dr. Darren Cargill found out while caring for Dan, a patient who had moved to Ontario from Alberta. Dan’s story is very moving, and it underlines some of the inhumanity in our disjointed healthcare system. Dr. Cargill confronted this inhumanity on his patient’s behalf, and that is an even more inspiring story.

I asked him as a guest blogger to speak about his advocacy on behalf of Dan, advocacy that has resulted in the introduction of Bill 54 into the Ontario Legislature. Here is what he had to say:

“Bill 54, introduced by MPP Lisa Gretzky and which was debated and passed second reading on November 17th, 2016, provides much needed support for patients and their families. Canadians who move or return to Ontario and require palliative care or home care should not be subject to the typical three-month wait to be eligible for OHIP services.
The Bill carries the support of the Ontario Medical Association on behalf of its 34,000 physicians and medical students.
The issue came to light for me when a patient, Dan Duma, was denied home care services upon returning to Ontario from Alberta. Dan was dying of cancer with a life expectancy of less than three-months. Dan’s Law prevents future patients, families and caregivers from experiencing unnecessary hardship as a result of this lack of access to needed care.
As a doctor, I know that there is no medical justification for the wait period and I believe that, especially in these circumstances, we should afford Canadians and permanent residents the right to die with dignity. The benefits of home and palliative care are not only medical – they serve to support family members and caregivers.
The benefits of timely care include avoiding potential medical complications of delayed care and the associated significant human and financial costs arising from these complications.
Bill 54 has passed second reading and was sent to the Standing Committee on Justice Policy. This bill needs to be passed before the provincial election. I am asking that you write to your MPP and ask that Dan’s law be passed.”

Why would a person have to move from one Canadian province to another if they were dying? We all know the answer to this. They would move to be closer to family members. Why should they be denied the benefits of palliative care or home care? Please send an email or letter to your MPP and ask them to move Bill 54 forward. No one should ever be denied care in Canada because they moved from one province to another to be closer to family.

You can contact your MPP in Ontario using this list. If you are a physician in Ontario, please support this work. You can find a template letter under Advocacy on the OMA website. You do not have to say much, just tell them to get Dan’s Law passed before the election.

You can tell from how he wrote those few words above that Dr. Cargill is a doctor who feels that part of his work is getting all the support his patients need, even when that requires changing the law. Think about yourself or your own family. If you, or a loved one was very ill and had to move to be closer to the people who love you, so that they could be with you and look after you, is it reasonable that your health care would be compromised? Of course not! Thank you to Dr. Darren Cargill of Windsor for working so hard to change an unreasonable situation.

Photo credit


Good Death

The term, “euthanasia” is derived from the Greek and means, literally, good death, and my intention in writing this essay is to focus on what a good death might be using my favourite book about the subject, Sherwin Nuland’s How We Die: Reflections on Life’s Final Chapter, as my touchstone. (Vintage Books, 2010 edition page numbers are used as references.)

End-of-life, Palliative care, physician-assisted death, physician-assisted suicide, euthanasia, “dying with dignity”: however you want to identify the issue, it’s in the news. The terminology is a quagmire and the topic itself is so polarizing that it is impossible to read anything that captures the issue completely. I am not trying to do this, let me qualify this from the outset. I am trying only to set out a few questions about this subject that trouble me in the context of this one book that helps me make sense of many of the confusing elements.

To position how topical the issue of a good death is at present, the Ontario Medical Association President, Dr. Scott Wooder, has made a discussion of the End-of-Life, especially as it relates to best practices in Palliative Care, a focus of his Presidency. He has very ably led in a direction that Palliative Care physicians have embraced, at least in my city. When he was part of a panel last week in Ottawa, many of the physicians in the audience were Palliative Care physicians. By contrast, in Quebec, Bill 52, An act respecting end-of-life care is being debated. Social Services Minister Hivon says the bill is “intended for people at the end of their life to die with dignity.” http://www.cbc.ca/news/canada/montreal/quebec-tables-bill-on-medically-assisted-death-1.1263943 These two examples demonstrate two of the most important aspects of the topic for Canadians and their physicians on this important topic.

As a Child and Adolescent Psychiatrist, death is not a usual part of my practice and so, in the debates of medical associations, I listen to my colleagues’ discussions and think of what my own death will be. A line from the introduction of Nuland’s book pushes through all the discussions: “The quest to achieve true dignity fails when our bodies fail.” As a physician, I am personally determined not to be influenced by myths or ideology about the process of dying.” Nuland stresses that his goal with this book is to “demythologize the process of dying”.

Nuland uses six disease categories, common ones that are responsible for most deaths, to illustrate how we die. These, he tells the reader, “have characteristics that are representative of certain universal processes that we will all experience as we are dying.” His goal is to remind us that the successes of modern medicine have contributed to the fact that many of us delay contemplating death, putting off the task of living wills and advance directives. We have more faith in medicine than we do in the most basic scientific fact that we will all die.

As an example, Nuland discusses cardiac disease and the history of the scientific and medical discoveries that have led to our expertise in the treatment of ischemic heart disease, which is the leading cause of death for most of us in the developed world. He also reminds us, however, that, as we developed greater expertise in treating this disease, “modern biomedicine has also contributed to the misguided fancy by which each of us denies the certain advent of our own individual mortality.”

Another piece of evidence that death is not natural part of life, according to Nuland, is the fact that old age is not acceptable on death certificates as a cause of death. In case regulations have changed, I will just note that this text was completed in 1994. In the 2010 reprint that I have used for this review, Nuland updates many facts but not this one. If one can now write “old age” on a death certificate, please tell me. Even so, Nuland’s rant from 1994 is still worth reading in its entirety, for who does not get fed up with bureaucracy occasionally?

“No one dies of old age, or so it would be legislated if actuaries ruled the world. Every January, just when the harsh autocracy of winter has tightened its hoary hold, the U.S. government releases its yearly “Advance Report of Final Mortality Statistics.” Neither among the top fifteen causes of death nor anywhere else in that soulless summary is there to be found a listing for those among us who just fade away. In its obsessive tidiness, the Report assigns the specific clinical category of some fatal pathology to every octo- and nonagenarian in its neat columns…In thirty-five years as a licensed physician, I have never had the temerity to write “Old Age” on a death certificate, knowing that the form would be returned to me with a terse note from some official record-keeper informing me that I had broken the law…” (Page 43)

When I consider the debate about medically-assisted death, physicians-assisted suicide, euthanasia – any or all of those prickly topics- I want to be clear that the terminology is not being well-defined and this is always the wrong way to start a debate. Whatever euphemism (also from the Greek, for good omen) you intends to use, define it, and start the debate at that point. I have many colleagues who believe that the euphemism “dying with dignity” has stolen dignity from the deaths of those who cannot and will not make this choice, either as a person or as a physician. Like Nuland, again, I believe that “the importance of airing different viewpoints rests not in the probability that a stable consensus will be reached but in the recognition that it will not.” (Page 156)

If medicine’s failure in the debate about the end-of-life is that medical science has, by its success, allowed the myth that death is not a natural part of life to be promulgated, then the media’s failure is that it focuses the debate not on the death that most of us want but rather on the death that only a few have chosen, even in those countries where the voluntary ending of life is not illegal. (WHO statistics are that Euthanasia accounts for 1 % of all deaths in the Netherlands. It should be noted that Euthanasia is still illegal in the Netherlands but physicians will not be prosecuted when certain guidelines are followed.) Also, if you want to confirm that the media is not, in fact, reporting equitably on the debate, Google the term “euthanasia statistics” for a flavour of the press focus. This focus upon euthanasia polarizes the discussion away from the need to develop strategies that strive to ensure comfort at the end of life, especially in old age when it is clear than the body is failing. I want my death to honour the life I have lived and it is not an honour to me personally to have my life extended by futile measures.

Nuland is a medical specialist. He had been Clinical Professor of Surgery at Yale University but he makes a “plea for the resurrection of the family doctor.” He stresses that this “longtime medical friend” is the best guide at our time of dying. I also agree with this. I am confident that my family doctor knows who I am, just as my family do, and I want these people making the decisions at the end of my life, if I can no longer make them for myself.

The final reason that the current debate on the end-of-life does not resonate for me is that, so far, the only people talking about faith in the debate are those who have no doubts about faith at all. I have many doubts about my faith although, like Madeleine L’Engle, I try to “base my life on my beliefs”. I will seek a blessing at the time of my death, although the blessing I want most is the company of my family and their love. I will be buried in consecrated ground – the plot is already paid for. For Dr. Nuland, as for me and many others, faith has sustained us and I want those chaplains who provide comfort to the dying and their families to bring their wisdom to this debate. If we don’t seek out these opinions, I fear only the opinions of the most extreme chaplains will be available to us. That will not be helpful: there are not so many damned as they think. Nuland quotes these lines from a poem by R. M. Rilke, which are spoken as a prayer and I leave this as a last thought from this wise book:

“Oh Lord, give each of us his own death,

The dying, that issues forth out of the life

In which he had love, meaning and despair.”