May 10, 2012

Getting Political

Writing a blog is a great way of getting out your personal opinions and calls to action about issues that are important to you. Many times, these issues are very personal and may pertain only to your limited situation. Other times, the issues are more macro in nature and need to see the light of day in the court of public opinion. I blog about death, something that is uncomfortable for many of us to see and hear in the open but which nontheless needs to be talked about for the many benefits we discuss here. But some times, we may need to get political.

Perhaps the most political issue in this area is that of access to palliative care and hospice services for the terminally ill. Olivia Chow MP, one of our most well-known politicians has a unique perspective on this.  While watching the community and the medical system rally arround for the birth of a grand-daughter, she also watched a similar rally around her husband (and leader of the New Democratic Party) Jack Layton as he died from his cancer.

Because Jack was able to take advantage of the palliative and hospice care options available in the community, his "...death was without pain, without trepidation and without fear. His family experienced no guilt and regret, and made decisions in full accordance with Jack’s will.  Jack was blessed with excellent palliative care and support. We had nurses to provide personal care and support at our home.  We had doctors to help control pain, to provide last minute instruction and let us know what to expect when the final hours arrive. We had listening ears to help comfort us and the rest of the family."

Jack and Olivia were lucky to be able to access this kind of care, as am I, but unfortunately, most Canadians do not take advantage of it.  They don't have the knowledge or power to be in control of the alternatives of care available to them.  Nor do they have the financial resources necessary to allow the end of life journey to be experienced at home - a safe place. 

Today, much of the palliative and hospice care is provided by volunteers and we are extremely thankful to them for all they do.  But it is time to make it part of the broader medical system to ensure it is made widely available to all of us, just like birthing services are.

Palliative care is incredibly important for the patient and for the entire family.  The fact is that palliative care can take financial and delivery stress off of the regular medical system.  It can be delivered alongside "standard" care.  It can improve overall quality of life for patients at end of life and those suffering with long-term chronic illness and in some cases can even extend life.  Unfortunately, these facts are not well known, but therein lies the opportunity and the challenge.

Change will not happen on its own. It will require a focused effort and a political will to change years of practice.  Maybe it's time for Olivia and other political leaders who "get it"  to give it the political focus it needs and advocate for changes to the system and the way it is funded or, at the very least, to increase awareness of the nature and importance of palliative care.  This blog is my small call to action in this regard and I'm starting to see more articles calling for change.  Let's hope the call gets louder and gets picked up by our politicians and in the mainstream press to give it the profile needed to start to see real change.

Personal Update

I hate sounding like a broken record, and perhaps I should only concentrate on significant changes to my health, but my fatigue is beginning to be overwhelming.  Short of pumping myself full of more steroids, there's really nothing much I can do about it.  I get up around noon most days and, by the time I've had my shower and dressed, I'm ready to go back to bed again.  Once I've been up for a while, whether I'm watching television or in a conversation or even typing, I start to doze off to the extent that I've become quite the conversation piece myself.  I certainly don't mind the odd chuckle at my expense - I think it's quite funny myself - but it is very disconcerting because sometimes I feel like I could just go to sleep and never wake up.

28 comments:

B. said...

If I were in your position, Doug, I think I'd be giving in to the fatigue much more than you are. My big problem in life (other than cancer) is anxiety and there are days I wish I could just sleep it off, if necessary permanently! Maybe I'll feel different when I get to where you are but from where I sit now I'd say: "take a nap".
All the best!

Ry said...

Doug, thank you, as always, for your courage and insight.

I read all of your posts and I'm grateful that you write them. I'm moving across the country to my hometown next month, to care for my mother, who has a brain tumor.

You are not her, and I respect that everyone's experience is different. Even so, reading what you write brings me just a little closer to understanding what's happening to her, and your words make me feel braver.

You're helping me understand the difference between passively dying, which we are all doing, each at his or her own rate, and actively dying, which is a whole different process.

Thank you for teaching me. You may not intend it, but every one of your posts helps.

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