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Post 94: Medical Decision Making - Another Perspective that Might Help If You Feel Stuck


 "Five years from now, which decision would you regret the least in making?"



When their loved one is not doing well and not able to make decisions for themselves, family members are often asked, "What would your loved one say if they knew what was going on?"

 

Sometimes, the answer is immediate and illuminating: 

"Oh, he would hate this, and he would never forgive me from up there [family member points to the sky] if we put in a feeding tube anytime during his lifetime." 

"She would want to keep fighting this, at least for now, since it's only been a couple weeks."

 

Other times, the answer is immediate but not as illuminating:

"This was never in the realm of what we discussed. I have no idea."

"I don't know.  I don't know what she would say.  What do you recommend, Dr. Lee?"


When the medical power of attorney (or otherwise designated legal surrogate decision maker) [read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)] appears to be struggling to make a difficult medical decision, I try to offer perspectives that might resonate with them.

 

(Read about these perspectives in the following posts:

 

One perspective is the "least regret" question: "Years from now, what would you regret the least?"

 

There are two main situations when this question could be helpful:

1.  When we as the surrogate medical decision makers feel overwhelmed and stuck, without a clear idea of how our loved one would choose to proceed forward

2.  When we know the outcome will remain the same regardless of what we choose (that is, our loved one will die regardless of the path we choose) and those who go on living will have to live with the decisions that were made pertaining to our loved one's final days

 

I would like to share two stories to illustrate these scenarios.

 


Last year, I met with the daughter of an elderly woman with moderate dementia.  Her mother had been functioning okay living in her own one story house, with three times per day visits by her daughter.  The daughter would bring meals because her mother could no longer figure out how to use the stove nor microwave.  Her mother was walking with a walker, but had already had several falls, each time pressing the medical alert button so that she could get quick assistance. 


This time, however, her mother had fallen and was noted to be much more confused than normal; she remained on the floor for six hours because she was too confused to remember that she was wearing a medical alert button.


Her mother was found to have long term kidney failure (from long term diabetes) that had now possibly reached end stage.  The medical doctors initially tried to reverse some of this kidney failure by administering intravenous (IV) fluids, but her mother continued to have worsening lab values.  Then she stopped making urine. 


Not making urine due to end stage kidney failure is considered an urgent medical situation, so the medical doctors discussed with the daughter consulting with the kidney specialist to initiate dialysis.

 

"For dialysis, we would have to insert a big catheter in her neck?!  No!  I need to think about this," the daughter exclaimed to the medical doctors. 


This is when the palliative care team was consulted to help clarify goals of care (Post 54: Why Should I Care about My “Goals of Care?”) and discuss next steps with the daughter.

 

As the palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I explained that one medical path would be for the daughter to give consent for the big catheter to be placed in her mother's neck so that dialysis could be started.  The hope would be that her mother would be less confused, more alert, and hopefully be able to breathe with less oxygen support as waste and fluid were pulled out of her body via the dialysis machine.  The worry would be that her mother’s body might become dependent on the dialysis machine long term.  Her mother, whose dementia had already been worsening the last several months and hated leaving her home, would have to be transported from wherever she would be residing (likely, she would not be able to live by herself anymore) at least three times weekly to a dialysis clinic, where she would then be connected to a machine for several hours as the dialysis machine acted as a partial “kidney replacement.” 


Her mother’s best case scenario prognosis would be limited years, though she would be at high risk for hospitalizations for complications related to progressing dementia and/or end stage kidney failure dependent on dialysis. 

 

The other medical path would be to acknowledge that since her mother did have dementia that was worsening and did not like to leave the house and enjoyed staying in her home environment, her mother would likely not want to be put through uncomfortable tests and procedures involved with initiating and maintaining dialysis.  Instead, the doctors would focus on comfort and provide medications as needed to keep her mother calm and comfortable. 


This path would likely correlate with an average prognosis of limited days if nature were to take its course.

 

“I don’t know what Mom would say!” the daughter exclaimed, “I don’t know what to do!”

 

I offered another perspective that could possibly help with decision making. 


I asked her, “As her daughter acting as her voice, what would you regret the least?  Would you regret less agreeing to the catheter and dialysis for the hope of your mom becoming more alert and then despite the invasive procedures, your mom does not wake up or she get weaker or she gets a complication and gets sicker, OR would you regret less choosing to let go of these IV medications, the catheter and all other invasive procedures, and additional labs and testing to focus on comfort instead?  This would be with the hope that your mom would receive peace and comfort sooner, but also with the knowledge that her average prognosis would then be shortened to days.”

 

The daughter immediately replied, “Oh, I would regret not having tried!  Five years from now, I would wonder and regret.  So that’s my answer…I’m ready to consent for the catheter.  Thank you, Dr. Lee.”

 

 

This path turned out well for our patient because she did become much more alert and interactive with family after a couple sessions of dialysis.  She did require long term dialysis on discharge from the hospital, for which the family had to work on logistics with the social worker.

 

There are other times when we may have clarity and even see a clear path forward, however things still do not turn out as we hope or anticipate.

 

 

Last year, am elderly woman, this time with severe dementia and already living at home with one of her two daughters, was admitted to the hospital with difficulty breathing.  She was started on an IV antibiotic for pneumonia.  However, every other day seemed to bring yet another complication. 

 

When the palliative care team first met with the two daughters, their mother was alert and eating bites at each meal time, and we anticipated an average prognosis of limited months. 


Over the course of several conversations the following week, the daughters decided they wanted to bring their mother home with hospice support as soon as their mother’s pneumonia was fully treated with IV antibiotics.  By the end of that week, despite attempts to treat ongoing medical issues, their mother was sleeping for much of the day and drinking at most one or two sips per day.  She was not eating.


The palliative care team worried about her prognosis shortening to limited days.

 

On one of these days, the older daughter met and spoke with the palliative care team in the hallway just outside her mother’s room.  “I’m worried that my mom isn’t going to make it.  I’m worried we’re not going to be able to fulfill my mom’s wishes to get her home and have her die at home.  I really want to get her home!”

 

I asked her, “What would you regret less?  Letting go of the IV antibiotic and getting her home today with hospice support while your mom has the capacity to at least wake up briefly and recognize that she’s home?  OR completing the IV antibiotic in the hospital – it sounds like the primary team is saying three more days – and while attempting to complete treatment for the pneumonia, she dies in the hospital and does not make it home?”

 

The daughter immediately replied, “Oh, I would regret her dying in the hospital!  I’m willing to let go of the IV antibiotic, especially since I don’t think it’s making a difference.  I don’t think she has long, and I want to bring her home.  Being home is all she wants.”

 

I asked her, “What does your sister want?”

 

The daughter replied, “Well, that’s the issue.  To her, it’s really important that the pneumonia is fully treated.  She’s worried about sepsis and fever and chills and cough and mucous…I mean, she’s fixated on Mom completing the pneumonia treatment before feeling comfortable enough to bring Mom home.  And it’s her home, so I have to respect that…But I guess what I could do, I’ll talk to her this evening and start introducing the idea that Mom really doesn’t have long and so maybe we should bring her home sooner rather than later.”

 

Our patient died later that night in the hospital.

 

The following week, I received a phone call from the older daughter.  She said, “Dr. Lee, I have to get this off my chest.  I am SO ANGRY with my sister.  I keep thinking that if we had brought Mom home, she could have died at home, which is all she really wanted!  I really regret not pushing this…”

 

As the daughter spoke and spoke, she eventually came to a realization.  “…well, what was going to happen, happened, and my sister really needed to know that we had tried our best to treat the pneumonia.  She really believed that not treating the pneumonia would have been the equivalent of having Mom suffer.  I can stay angry with my sister, but Mom wouldn’t want that.  I don’t mean to sound callous, but Mom is gone.  Mom is gone, and my sister is still here.  I’m going to have to let go of my anger.  My sister and I are really close, and I wouldn’t want this to get between us…”

 

 

In this case, our patient’s death was inevitable regardless of the medical path the family would have chosen.  So the priority shifted to making medical decisions (and family decisions) that the family decision makers would be able to live with once their loved one were gone.

 

I have previously talked about various ways to approach decision making on behalf of a loved one when attempting to make high stakes, emotionally fraught, difficult healthcare decisions.  I hope the “least regret” question is another perspective you can put in your toolbox for if/when you find yourself in a very tough decision making position.

 

 

 

 

 

 

 

 

 

 

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