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Dealing with Moral Distress in End-of-Life Caregiving

by Viki Kind, End-of-Life Expert
September 08, 2011

Question: My father said he wanted everything done, but I can’t bear to watch his suffering. It seems like he keeps getting these terrible treatments but nothing works. The doctor keeps asking me if I think it is time to put him on hospice but I promised my dad that I would make sure the doctor didn’t give up on him. My dad is the type of person who would never give in or give up. I feel like I am supposed to do what he says, but isn’t there ever a time when I should just say, “Enough”?

Answer:

I am so sorry you are in this terrible position. It must be difficult to balance doing what you think is the right thing for your dad with trying to respect his wishes. The first thing I would suggest is to make sure you get better pain management for your dad. He shouldn’t be suffering while he fights his disease. Ask for a referral to a palliative care doctor. This type of doctor can help you with the healing of your dad’s suffering and will help get his symptoms under control.
 
Secondly, what you are experiencing is moral distress—you are doing the right thing but it feels so wrong. For some people, there is tremendous value in fighting to the end. Not giving up is more important than the hardships that are faced along the way. But this can put a tremendous burden on the person having to make these decisions and witness the results. The other people who suffer greatly are the healthcare professionals who have to participate by inflicting care that they don’t think is helping the patient anymore.

It is so painful when our loved one asks us to advocate for things we don’t agree with. The thing you have to realize is that this is your dad’s life and health. People have the right to make bad decisions. You have to be brave enough to do right by your dad and respect his bad decision.

So here are your obligations. Since your dad told you that he wanted to fight to the end, that  is what you should try to do. If there are more treatments that the doctor can try, then you should have the doctor keep trying to find what will work to cure your dad. If the treatments are only causing suffering and are not helping your dad, then you are not obligated to continue with the plan. You are supposed to fight for the medical options that will actually benefit your dad. Talk to the doctor and ask if there is something else that should be tried. If there is nothing else that the doctor can offer, that is when you can say, “Enough.” Then you will need to advocate for the best end-of-life care you can. When the time comes, you can fight for a pain-free and peaceful death. Don’t think of this as giving up; think of it as fighting for a different goal when the time comes.

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Viki Kind is a clinical bioethicist, professional speaker, and hospice volunteer. Her book, The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can't,” guides families and professionals through the difficult process of advocating for those who can no longer speak for themselves. She has recently launched a DVD that includes a template to create a quality-of-life statement.

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