Shared Knowledge

 

A Delicate Balance: Living at the End of Life

 

By John F. Tomczak

 

At the risk of stating the obvious we do indeed live in changing times in the care of those at the end of life.

 

Well, that is just about as bad as, “It was the best of times and the worst of times”. But seriously we need to spend a bit of time thinking of how far our culture has moved forward in this part of our collective life.

 

It was Saint Elizabeth of Hungary who introduced the concept of being responsible for the well being of our fellow man.  Her teachings led to the concept of Hospice Palliative Care as we know it today. 

 

The definition of Hospice Palliate Care could embrace just making a person comfortable to total care which may include every kind of assistance known to us at this time. We need to understand how this concept has become a part of our lives and talk about how the many disciplines work together and are part and parcel of the care at the end of life.

 

I was born at the end of the Spanish Flu that almost devastated the western world at the end of World War 1. I can remember my mother telling of that terrible time: how her mother was seldom at home because she cared for many ill people in the church basement and they just died. The few doctors and nurses had little resources except bed rest and cooling cloths. There were no medicines and little understanding of how it was passed from one person to the next.

So I grew up in a time where the care of the seriously ill depended solely on the doctor and the nurse. Those were heroic times for those pioneers in the health care. I hasten to mention I grew up in Saskatoon Saskatchewan, the birthplace of our Canada Health Care Act.

 

Today, some eighty six years later the end of life care includes a never ending listing of specialists who have wonderful machines and most importantly the training and background to care for our citizens. This knowledge includes doctors, nurses and a list of others too long to mention. We have this help simply we wanted it.

 

The most obvious examples are nurse practitioners and midwives. Besides these few examples there is the field of naturopaths and others. Not everyone agrees with the choice of some treatments available but they are part and parcel of the heath care scene and should be respected.

 

Because I try to speak only from my own experience I think it only proper to tell you the story of my wife, Collette’s, illness and death.

 

Collette, as a child spent two years in the sanitarium at Fort Qu’Appelle in Saskatchewan being treated for T.B. Since that time she had regular chest x-rays as part of our nation wide statistics on this illness. During one of these routine visits to the chest clinic a tumor was found on one lung. The tumor was removed but soon afterwards many smaller tumors were found in both lungs. 

 

Collette had been a heavy smoker all of her adult life and her response to this terrible news was, “it is my own damn fault”, and she never smoked again.

We had some time together and we made the most of it. As time went by we both knew that we had the best help we ever could have imagined. We had our children, friends, doctors whose compassion is still very real to me. Nurses who appeared just when we needed them. 

 

Hospice became a part of our life and of course still is a part of the family life and because I am a bereaved person. My wife, Collette died in her own bed in 1987 after an illness that consumed our lives for two and a half years. It took me some time to understand that in those two and a half years that we had lived through the best and worst times of our life together.

 

The worst time was that we both knew that our future hopes and fears were never to be.  The best part is the memories of a very happy and fulfilling life together.  

      

But what was the underlining gift that all of there caregivers brought to help us? How was the Hospice Doctor able to sit quietly with Collette and gently explain that as a Doctor she was not very good a t delivering babies but was very good at controlling pain. And that wonderful nurse who after massaging Collette’s feet had a good look at that troubling nail on one big toe and said’ “well I’ll fix that” while I stood there trying to work up the courage to ask that she do that for Collette. That was one of my little jobs most of our married life but now I was worried that I would not be able to do it properly! 

It would be easy to say that those who cared for Collette were just doing their job but that would be unfair and out of keeping with their training and expertise. Within an hour after Collette’s death one of the counselors from Hospice arrived to help us. I can remember how this caring person explained Collette’s death to our grandchildren in such a gentle way that is remembered to this day. When I had time to reflect on the care that Collette received I began to understand that there must have been some sort of plan that while unknown to me was somehow guiding the caregivers.

 

The phrase, “A Delicate Balance: Living at the End of Life” is an apt phrase to describe Collette’s last few days. It was a time of peace, freedom of pain, being with her family and reassuring us with her tiny little smile that everything was just fine.

 

When I reflect on the seamless care that Collette received I know that somehow there was an unspoken plan that guided the caregivers. The roles overlapped without seeming to do so.  Nurses gave us instruction on the use of “depends” just as a matter of fact. Doctors spent time comforting and reassuring us that while morphine is a powerful opiate there is no fear of addiction when it is used for pain control.

 

Care at the end of life can be best described as palliative care. For a person who has been ill for some time the transition from an illness state to one that nothing but Palliative care is appropriate is sometimes a long and difficult journey. It requires understanding, gentleness and compassion. Usually there many caregivers involved.

But the help given by caregivers of many different disciplines in a palliative care situation in our home demonstrated how easily people can work together with but one goal in mind. 

 

It is easy to take for granted the way caregivers work together and even sometimes take the role of others for a time. The way the nurses talked to me in the last few day of Collette’s life was, on reflection, a gentle form of bereavement support. During the past eighteen years as a volunteer at Victoria Hospice I have had hundreds of people tell me that their bereavement journey started with the nurse at the bedside of their loved one. However nurses are not alone in this role. There are doctors, social workers, clergy and volunteers who somehow find the right words to say, give the hugs at just the right time and all those little things we humans need from one another.

 

However we humans are social beings and I am no different. After four and a half years of bachelorhood I met Claire and we have had some fourteen of the most interesting years of my life together. Her husband, whose name was also John by the way, died in 1990. I frequently call Claire Collette and she always answers, thank goodness. Hard for her mix up our names I might add. We speak of both Collette and John most days. They are a part of our life.

 

Claire and I work together at Victoria Hospice with the Walking Group and Bereavement Self Help Social Groups. We also work in our Faith Community to bring an awareness of what Hospice Palliate Care can offer when needed. While there is much help in the community sometimes when folks need it the most it is hard to find. We just heard that St Andrew’s Cathedral has recently hired a nurse. A major step forward!

Well as usual in most folk’s lives I had an epiphany or two that has caught my attention.

 

The first one was in Saskatoon during a lunch at a palliative care conference. I had something stuck about half way do and it was painful. I tried to swallow but the pain just got worse. Thank God my friend Lynn Cummings was at the same table. She knew I was in difficulty and got me out of the dining room. She then got some bread and had me take very small bites and got me to swallow. Naturally I did as Lynn said and gradually the pain went and we relaxed. Just then Michael Downing came out and asked if he could help. Lynn told him what she had done. Michael asked where she learned to do that. Lynn said, “From my Grandmother”."

 

That was my introduction to Shared Knowledge.

 

The second epiphany was while I was in the Jubilee Hospital the day before Doctor Dutton fixed my heart. A man came by and introduced himself as a hospital visitor from the First Open Heard Society. We had a great chat and he talked about my operation in the morning, showed me his scar on his chest and on his right leg and put me at my ease. 

 

That was my second introduction to Shared Knowledge. Now I had the doctors explain the operation and the risk and time of recovery and all but this man had been there, done that and it was different. Never saw him again.

 

Some time later I read John Ralston Saul’s book, “On Equilibrium” no easy task I assure you but it then became very clear. 

 

The only way we humans learn is from the wisdom and experience of others. Through the ages the only way to learn from others was by observation. With the advent of the written and printed word knowledge has been shared from generation to generation. The health care system is research driven to a large extent. In other words we do share our knowledge sometimes without us knowing.

 

And that thought brings us back to the caregivers at the time of Collette’s death. This good people brought not only their own knowledge but a willingness to share it with other caregivers. What I was seeing was the results of long term training and cooperation that is ingrained in experienced health caregivers.