I am a huge Atul Gawande fan. Last year a close friend sent me a link to his book “Being Mortal” and I read it with great interest. If you have not read Dr. Gawande’s book I would strongly encourage you to do so. Death and dying are not topics that many of us are comfortable discussing. It is not a topic that was well discussed when I was in medical school. Fortunately, my parents and I had the type of relationship where we could discuss anything and everything. It is for that reason that I had a very clear understanding early in my career on their thoughts of dying with dignity.
What prompted this post? Last week I read an article in the Huffington Post Blog article “Doesn’t Hospice Really Kill People” by Susan R. Dolan, RN, JD. One of the main topics addressed by Susan in her article was the role of hospice care in pain management at the end-of-life. Pain management is one of the many facets of the care provided by a strong hospice program and I would encourage you to learn more about hospice care on the National Hospice and Palliative Care Organization website.
In the past four years I have been in hospice care in two states. I have no words to thank the team from Hospice Buffalo who assisted my father and me in caring for my mother at home. The positive nature of that experience allowed Dad to make his own end-of-life decision to seek hospice care. What fascinated and frustrated me was that in both situations the hospital care team was discussing the next intervention rather than having the difficult conversation. My mother with end-stage COPD was not going to get better if she was discharged to “rehab”. She was tired of struggling to breathe and when she told me that she was ready to be at peace I was her advocate for home hospice. The very nice vascular surgery team who came to speak with my father and I in the ICU never discussed the option of not doing anything. It was only when Dad “…respectfully declined…” their offer to go to the OR that a Hospice Care consult was placed. Dr. Gawande’s book “Being Mortal” accurately captures some of the challenges I encountered in dealing with the medical community. I wonder and worry about how others without my knowledge and tenacity manage to be the advocates for those they love or even for themselves.
So what does this have to do with chanticleers? If I had titled this post “My Thoughts on Hospice Care” my guess is that you would never have clicked on the link to open this article. I cannot do justice to the extent of support and care that hospice care teams provide to patients and families in the most difficult of times. Not all hospice care is equal; I have had friends share with me experiences that were far less positive than mine. These programs need to listen and learn from the loved ones of their patients. As a surgeon it was easy for me to compartmentalize the decision to consult hospice and quickly move on to the next task at hand. As a daughter and a friend I could not move on but I am moving forward. I have learned that hospice care is focused on allowing us to live our last days in peace, with dignity and free of pain.
"I do not propose to write an ode to dejection, but to brag as lustily as chanticleer in the morning, standing on his roost, if only to wake my neighbors up."
from the title page of Walden and "Where I Lived, & What I Lived for"
Huffington Post “Doesn’t Hospice Really Kill People”
Addendum: It has been a year since my last visit to a hospice unit but the memories are as fresh as if it was yesterday. I want to extend my heartfelt gratitude to the providers at the Northcare Hospice and Palliative Care. Thank you.