Nothing is more difficult than deciding on stopping or refusing life sustaining treatments. It is even more difficult and almost impossible for many a family members because of the emotional connections. Just as a father once said to me, "I would not want to be like this but she is my daughter. How can I make this decision which may end her life?"
I would like to share the story of Sally ( not her real name) where we were able to take the load of decision-making off her and the family's shoulders to obtain a good result.
Sally, age 62, was very sick with end stage liver disease with fluid accumulation all over, severe jaundice with heart failure and breathing problems. Now, she was totally bed bound and barely able to eat but mentally quite alert and making her decisions. Her prognosis was very poor and she was hospice appropriate with life expectancy of less than 6 months. her quality of life was very poor. She could communicate but barely smiled. If she were to arrest and be resuscitated, she probably would not respond and at best be on a vent and clinically at a worse level than now. Doctors felt that a "Do Not Resuscitate " order in case of an arrest would be the right thing to do.
I was asked to consult. I agreed with her physicians and talked to the patient about the reasons why a DNR might make sense and for her to give it some thought. She understood and wanted to think about it. Family was involved in the discussion and privately seemed to support the notion. The next day, the patient seemed quieter and voiced that this was a hard decision. At this point, I decided to take the load off her shoulders and suggested that I work with her family and help them decide what is best for her, knowing they had her best interest at heart. Her face relaxed and she quickly agreed. Thus, we took load off of her shoulders.
Now, working with the family, we told them that these choices are medical decisions. In such cases, there are treatments and procedures that are of no benefit to the patient. In other words, they do not help us get to the goals we want to achieve, namely to get her better. Instead, we would be prolonging the dying process and increasing pain and suffering, not just for her, but for all concerned. The family needed to look at this a medical decision, understand the reasons and not feel that this is only their decision. The family did not object. Thus we were able to take the load off family's shoulders too by making this a medical decision. All they had to do was show their understanding. In addition to the do not resuscitate/ allow natural death order, family and patient agreed to a hospice consult.
Our job as palliative care physicians and teams is to help patient and families make difficult decisions. We help them understand why their decisions makes sense so that in the end they can be at peace with their decisions knowing they did what was best for their loved one even though it was very hard.