Sunday, March 10, 2013
What is Compassionate Comfort Care?
Over the past 24 hours, my family and the hospital care team have been guided by my father's healthcare proxy to avoid painful, invasive, or aggressive care at time when his multiple medical issues have combined to make his health decline irreversible.
The healthcare proxy was extremely clear and enabled us to finalize the do not resuscitate and do not intubate orders. We agreed to stop monitoring and stop all medications except those needed for comfort. We agreed to stop drawing labs.
We want to ensure his comfort and avoid needlesticks/procedures that will cause him anxiety.
But there are other decisions to make.
His bone marrow has stopped producing red blood cells and his hematocrit has dropped to 22.
His heart attack on Friday caused such damage to his heart that the volume of blood per heartbeat is less than half of normal. His lungs initially filled with fluid but are now clearing.
Given his low hematocrit, do we give him blood?
Although it may enhance his overall feeling of well-being it will likely fluid overload him and make breathing more difficult.
Do we give him IV fluids?
He was fluid positive over the past 24 hours, so we have to delicately balance the notion of keeping him hydrated with fluid overloading him.
Do we consider a feeding tube?
His platelet count is 37 and bleeding caused by the trauma of inserting the tube is a risk. Feeding tubes are irritating and might require us to apply restraints.
These are difficult decisions to make as a doctor and a son. It is very challenging to be objective when the questions are about your own father.
When thinking about what provides him the most compassionate care, there is also a need to weigh the family's beliefs about comfort with my medical experience. Feeding sounds like compassionate comfort, but the pain and anxiety caused by feeding tube insertion and maintenance may not be.
So where are we on the journey and what decisions have we made for my father's care?
At this time we have discontinued all tubes, all wires, all restraints - anything connected to his body except a single IV line which is used for comforting medications.
We've moved him to a sunny room with a wonderful view and enough space for family and friends to visit.
We've changed his comfort medications to a constant infusion rather than as needed dosing.
We're giving him just enough fluids to keep him in even fluid balance.
My mother and I have divided up the 24 hour clock so that we're with him constantly and each of us can get 4 hours per day of sleep. A rested caregiver is better able to make compassionate decisions.
I wish there was a single definition of compassion comfort care that could simply be ordered. My experience over the past few hours suggests that the patient's wishes, the family's beliefs and the care team's advice all must be combined to arrive at an optimal answer. Since Friday, we've made stepwise decisions that were not clear or obvious at the beginning of the process.
My father is resting comfortably and I'm telling him stories from the best memories of our lives together. I know he's listening.
Posted by John Halamka at 4:07 PM
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Thank you for illuminating how advance directives, along with informed family decision makers can make so much of a difference in helping each of us in our final days.
We stumbled through this with my Mom & Dad, but were able to do what they both had told us were they're wishes: enjoy the comfort of family in a surrounding that was familiar, while being kept comfortable through the best of medical care. No intrusive medical care, just comfort care.
I hope your stories fill your Dad's last moments with comfort.
You're a good son.
Has to be tough to write a blog under these circumstances, but I think you are doing a great service by making us all think about these issues and perhaps plan better for the future. Thanks for all you do.
John... Two weeks ago, my wife's 87 year old mother and my 92 year old mother died within hours of each other on the same night. Like you, we were well prepared to manage their end of life care in the right way. While I believe we did, it is still emotionally hard. Our thoughts and prayers are with you. I have followed you for years. You are a good man. John Haughom, MD.
I have followed your blog for over a year now and never commented, because I am also in the HIT field and you just never know how we might be connected. Today i realize we are connected in the situation you are in with your father. I have been there too. I wish you and your family much peace and love through this time.
Thank you so much for writing this. You are doing a great and good service for all who read this and for your father as well. Be proud of the love for him that you express.
Wishing you and all your family peace and freedom from suffering. You share more than you know. Thank you.
I have read your blog for years with great interest but never a comment. My thoughts are with you, Kathy, and the rest of your family as you go through these difficult times with your father.
I recently went through a similar situation although unfortunately we were not well prepared as my father passed away very unexpectedly as a result of anaphylaxis caused by a bee sting.
Although understandably difficult for you to post to your blog during this situation, your advice and guidance of how to effectively prepare for these inevitable events is a great service as are your insights in providing comfortable care.
On a more positive note, your continued blogs regarding Unity Farm are of great interest as well given that my wife and I recently purchased a circa 1793 farmhouse in Northern Vermont and are beginning garden/farm/renovation plans now. Your posts have been particularly helpful!
Thanks for what you do and best of luck as you work through these challenging times.
This kind of situation is really painful when it happens to the ones who we love the most. My father was admitted to hospital with MCA (stroke) and since he was a diabetic and had high sugar, doctors were not able to administrate enough....It was really a very painful time of my life and it was the same time I lost my father
Wishing you and your family strength and peace through this time.
Your writing has always been inspirational particularly this particular blog. Your father seems to have left a very lasting, positive influence on a lot of people and knowing you, I can only imagine what an accomplished man he must be. Your presence must be of great comfort to him.I lost my mother in 2006 and it was a very painful experience but the fact that all her children were by her bedside constantly in the last days of her life must have helped her in her journey to the beyond. May you find comfort and peace in being with your father. You and your father will be in our thoughts and prayers.
I've read your blog, on and off, for some time now. I work in healthcare informatics and have long appreciated your insights but I've never commented here before.
This article (and the others about your Dad) resonated a great deal - they brought tears to my eyes. Dad died in 2000 (pancreatic cancer) and Mum less than a year ago (bowel cancer, with liver and lung metastases). Mum had a stroke a few days before she died. That was particularly hard for both of us: she was conscious but unable to speak. The end of a cherished 50 year conversation. I had been with her for the last few weeks and we had talked and talked, about childhood, about Dad, about how they bought their plot of land and built their house - the house where my brother and I were born and raised.
Both Mum and Dad were Med. Lab. scientists (pathology and histology), so well aware of what was happening to them. We had discussed how to handle the palliative stage and made some of the decisions you described, ahead of time, but it's still hard even when you know more or less what you need to do, isn't it?
Your posts on celebrating your father's life and on compassionate comfort care really moved me: that's some of the best writing I've ever come across.
Very best wishes to you,
My aunt passed away on March 16 at age 104. She was mostly lucid and recognized us even as her bodily systems were failing. Like you, we struggled in trying to keep her comfortable and avoid intrusive medical care. Even comfort care in tiny doses produced radical effects.
Cause and effect are relative. The condition and personal attributes of the person exiting this life may lead us in the choice of options. However, science seems to be only one aspect of the dying process. Spirituality and beliefs, emotions, the people and context that surround the departing one surely weigh heavily too.
My prayers for our shared losses.
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