An Impassioned Plea for a Death With Dignity – In Memory of Dr. Donald Low

Dr. Donald Low, the physician we came to trust during the SARS crisis, made an impassioned plea for a death with dignity in a video that is gaining much attention. His wife, Maureen Taylor, “said though her husband did not die in pain, his final days were a struggle as he lost control of bodily functions and struggled to breathe.” It was the death that he had predicted, not the death he had wanted.

When I began writing Autumn’s Grace it did not occur to me that I would become engaged in a public conversation about end-of-life care. I have neither the legal, nor the ethical expertise to engage as fully as I would like. But it appears that Autumn’s Grace, has started processes with readers of reflecting upon the deaths they have encountered and discussing their own wishes.  That is a good thing.

Quebec’s Bill 52- An Act Respecting End-of-Life-Care has gathered and polarized public debate. The Bill begins to provide the legislative framework for a death with dignity. However, it raises flags for those of us who have been concerned about the issue. A colleague and friend of mine in Montreal, Lorine Besel, has through letters to the Montreal Gazette been suggesting ways of improving the legislation.  Death with dignity is a complex issue. While I am not an expert, I will try over the next week or so to gather my thoughts, along with Ms. Besel’s and post them here. I do think it is important that we engage in a national conversation on how we can manage end of life care in a manner that is ethical, legal and responsible.

Toronto Book Launch for Inanna Authors and Toronto’s Word On The Street

I had two delightful experiences in the same week. The first was to attend Word On The Street  and spend time behind the tables at The Writers’ Union of Canada  and the Inanna Publications booths.  And if that was not enough, the week was topped off by a Launch hosted by Inanna Publications for five of their authors, Vancy Kasper, Katerina Vaughan Fretwell, Cecelia Frey, Sky Curtis and me. In both instances I had the pleasure of talking with other authors. It was a very good week!

Click the links below….

Fall 2013 launch invite rev – The covers of the 5 books

http://youtu.be/Cn96wsJfrJk – A reading

See: Photos of Friends at Various Celebrations

A Full Life to the End

Wall Street Journal Saturday/Sunday, September 7-8, 2013

The Ultimate End-of-Life Plan

How one woman fought the medical establishment and avoided what most Americans fear: prolonged, plugged-in suffering

By Katy Butler author of “Knocking on Heaven’s Door: The Path to a Better Way of Death,” to be published Sept. 10 by Scribner.

http://online.wsj.com/article/SB10001424127887324577304579054880302791624.html?KEYWORDS=A+full+Life+to+the+end&cb=logged0.34060677189703203

A Student Nurse Comments on Autumn’s Grace

One of the lovely experiences of having a novel published is having people share their impressions, and then take the time to  tell me their own stories. Both are gratifying because at many times during the writing of the manuscript I would stop and say “Why am I doing this? Does the world really need one more book?”  What kept me motivated were my goals. They were:

  1. to start conversations  within families, and among friends and neighbors about how we manage end-of-life care
  2. to influence positive changes in the provision of palliative care (more skilled practitioners, more home support, more residential hospice care)
  3. to have Autumn’s Grace appear as a recommendation on the reading lists of students in health care programs.

So…it was heartening to receive a letter that had been written to my sister by a young woman beginning her third year of nursing school. I am sharing it below with her permission:

Dear Barb,

I just finished reading your sister’s novel, Autumn’s Grace. I very much enjoyed reading it and found it an interesting piece of literature, especially as a nursing student. In my nursing curriculum at [name of a Canadian University]  the topic of palliative care is quite neglected, I think we had one lecture on palliative care last year (2nd year). It seemed to be a difficult topic to teach as our professor did not have any experience with palliative work and we do not have any clinical practice in that field of nursing.

I thought Autumn’s Grace did an excellent job at describing the struggles with palliative care (from both the family’s perspective and health care perspective) and really opened my eyes to an area of nursing I had never thought about. I learned many important lessons that I hope to adopt into my own nursing practice, such as maintaining quality of life till the very end, caring for not only the patient but the family as well and that the healthcare system needs to be constantly changing and improving and not to simply accept the minimum standard healthcare practices. Also that first impressions and how I dress/look is very important too!

I just wanted to let you know how glad I am that I read the novel and I think it will improve/change my own nursing practice, not only when I graduate but at clinical too. Food for thought!

I was wondering where I could get 4-5 copies of the book? Online? Or at Chapters or Indigo? I want to purchase some copies so I can circulate them within my nursing class. I think my classmates will benefit from reading the novel and that they will be interested in the topic too! 

If you wouldn’t mind passing this email along to Bonnie please? I would like her to know how much I enjoyed and benefited from her novel!

Sincerely,
Elizabeth

I am delighted that Elizabeth registered the need to be addressing palliative care as a family care-giving experience. When my father was diagnosed,  we were fortunate to have a healthy mother and six like-minded siblings to share the emotional and care-giving burden. That was not the case with my husband’s parents. He is an only child and the care-giving was managed between the two of us. It was strenuous in the extreme to add this care-giving component into a family life that had us both fully committed on other fronts. Having said that, we would commit to it again in a heart-beat. There were positive outcomes for our sons; there were tender expressions of love; there were stories to be told. And these things happened during a period where we struggled to find the support that we needed,  to provide the support my husband’s  parents needed. But what if we had not had the personal resources to hire in help? What if there had been another sibling who had conflicting views of how to manage? What if  my in-laws’ family doctor had not been on-side?

The Campbell Family and their experience is, I am learning through discussions with readers, more typical than even I had imagined. As a society we spend time preparing for child-birth and learning how to care for babies and toddlers, yet we spend almost no time  learning how to manage the end-of-life. It is unfortunate. By focusing on only one end of the life journey, we risk limiting our own personal development.

I look forward to hearing how your conversations are developing!