We must, first and foremost, acknowledge that a person, living in the United States, where the philosophy behind delivery of medical care services is not the same as in Canada wrote the article “ALS—A Disability or a Fatal Disease”.
The American system is driven by profit. This statement is not meant as critique, but as a reflection of reality. This is not to suggest that it is devoid of expertise, compassion, or kindness, or that perfection is found within our own system. It is simply recognition that same fundamental and intrinsic values, championed within the Canadian system, and by the Canadian public, are not present. That fact has to be stated in order to give the article context, for its echo is heard throughout the opinion piece.
I cannot imagine the co-ordinator of an ALS Clinic in Montreal, Ottawa, Toronto, London, Winnipeg, or Vancouver telling any person with ALS that it was “Too expensive” to prolong their life. There might be difficulties to overcome, inadequate funding of some programmes, hard decisions to be made, but the underlying thought towards care would be positive in nature and never dismissive towards life, regardless of cost.
I read the sentences, “Quadriplegics have rehabilitation centres. We have hospices,” and wondered if the author realized that a person with ALS is as fortunate to have a hospice centre as the quadriplegic is to have a rehabilitation centre. Not understanding this might denote an unfortunate lack of understanding of what Hospice Palliative Care is all about- Hospice Palliative Care as we know it today, and as it has evolved since the mid 1920’s.
It is a philosophy of care with well -defined and articulated norms of practice meant to bring quality of life, comfort, dignity, and hope, to individuals and families living with a disease or illness for which cure is not possible. It is delivered by an interdisciplinary team, is a co-ordinated service, is available at home or in an institution, and is active in nature. It recognizes dying as a stage in living and seeks to provide physical, emotional, social and spiritual care to people living this stage. It teaches that the dying have the right to choose, to decide, to laugh, to grieve, to console, to love, to make decisions, and to be respected. It does not aim to hasten death but to enhance living. It supports and recognizes the value of caregivers and knows that illness is shared with loved ones. Death is a moment. Dying is living.
Isn’t this a message for us all? Don’t we live our lives more fully with an awareness of the essential in life when we carry death on our shoulder? I am sure Cheryl Carter New reflects this sentiment when she states, “How many people, in their rush to do the next thing, don’t experience their world to a tenth of the degree that I may?”
As a proponent of Hospice Palliative Care, I see every person I meet with ALS as living, and that is exactly what I want them to continue doing. I celebrate, as they construct new lives for themselves- lives that include disability but lives that are stronger than might ever have been imagined!
ALS-disability or fatal disease? The question looses relevance when one decides to focus on living! Somehow, I think Cheryl Carter New would agree.
I would like her to know that my Mum, Chrissie Carter, and her large family who became caregivers, as we all lived with ALS, benefited from the very beginnings of a Hospice Palliative Care Program.
marie Salamoun-Dunne
Support Services
ALS Society of PEI
"On the human chessboard, all moves are possible." Miriam Schiff
MGM
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