Comfort care goes beyond DNR orders

Recently, 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 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 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.    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.

John Halamka is Chief Information Officer of Beth Israel Deaconess Medical Center and blogs at Life as a Healthcare CIO.

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  • James deMaine

    Thanks for sharing this message. I admire your courage and the sensitive leadership in a most difficult situation. What a blessing that your Dad made his wishes clear.

    My Dad had chronic CHF and finally “failure to thrive” with some dementia at age 94. He did not want medical heroics. I was able to help the family adhere to his wishes. He quit eating, but got wonderful palliative care much like your Dad. He died a natural death with loved ones at his side – a touching legacy for the family. My Mom’s death was different, but also with an unexpected legacy: see:

  • M. Jane Markley

    John, thanks so very much for your willingness to share these details. The more exceptional stories like yours I find, the easier it is to provide people with real life examples of how having a healthcare proxy can make a huge difference in allowing people to live their life as they desire. One can never anticipate all that will happen through the dying process but having a roadmap of what is important to an individual as well as having had the conversations that you obviously had with your Dad make such a huge difference.

    Like James, my Mom and Dad benefited immensely from having their plans in place along with the discussions we shared while they were still healthy and concerned that would be treated as they desired. Those documents coupled with strong family intervention allowed them to have their desires met. Thanks to both of you for your advocacy in this arena.

  • meyati

    While dying is something that all people do-I’m facing this in a known way. It took me 2 years to get a DNR. That’s ridiculous in this day and age. The hospital system said that it had to be filled out in front of your doctor and signed. Often the clinic didn’t have the DNR forms. I was told to fill out the 5 Wishes-I went up- and almost every time I made a choice on their list- I was told that it wasn’t an option unless I had a DNR. I cussed like a sailor and loudly vented my disgust with the system and situation. I didn’t know that the counselor was the chaplain. They finally found a doctor in the hallway, and decided to break rules. They said I needed to redo it, as it wasn’t done correctly. That time the proper counselor showed up-it was filled out the same way with curse words still in it. I look at the account of your father and how you handled his pain–wisely and with compassion-yet my system got mad because for pain-I put- I want all the F****** dope that you can give me. They said- but you won’t be alert-They don’t get it-I’ll probably have multiple bone borers drilling through at different places-especially on my head and shoulders. I don’t want to be alert for that. Normally, I don’t talk like a sailor- but I have such rage at the insensitivity of the Quality of Life counselors- and a system that wants me to be alert while my bones are being drilled through. One note of progress–They now have a DNR link on the Home Page for people to fill out and turn in. I told them that they are acting like a DNR is consent to suicide. I told them that I didn’t need their permission to commit suicide, and I sure as H*## was capable of committing suicide without their help or permission. While-I too have a loving son, he’s not a doctor or politician-whatever that can navigate these problems. Bleeding throat from tubing-I put down only for 3 days and pull it. Coma- pull the tube and everything on the 4th day. Just dope me up to try to kill the pain-have mercy on me. What really makes me mad is most of the 5 wishes is about massage-oils-music-etc. I would rather have my pain eased as much as possible. I want to be clean–and my disabled vet son have to go through too much anguish in being asked a million questions about tubing, etc. A Directive is supposed to answer these questions- and I shouldn’t have to F#@#*#@ have to be questioned about any of my decisions. I think they are c#*% sucking idiots. Cussing isn’t nice- but sometimes-a person has to go to extremes to make their wishes known. My current doctors think that I’m a sweet heart, but we deal in realities and do some joking. I hope that many patients have a doctor and counselors that are as wise as you are.

  • militarymedical

    If only everyone had such foresight (as your father did) and supportive families. It was brought up on an earlier topic, but I’m rapidly becoming convinced that “Dying” should be a diagnosis. I’m not much for cookbook medicine, but a few protocols, determined by the level of support the patient wishes, would help guide us through the minefield of death and dying in an American hospital or our healthcare system. Patients should know any protocols in advance, if possible.

  • Kate Smith

    Thank you for your candor on such a delicate topic. We often make decisions for others but when it is our own, those decisions do not come as easily. It is obvious that you spent a great deal of time making sure that the decisions were the right decisions. God Bless you for the wonderful care you gave your Dad as well as your Mom and yourself!

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