How Does a Doctor Talk about End of Life Care?
Written by: Lynne E. Porter M.D., FACP
I have been Susan Martin’s (not her real name) primary care physician for years. She is fiercely independent and determined to do what she wants no matter what I suggest. However, age and disease have taken their toll and she knows it. It is time to talk to her about end of life care. I am not looking forward to it. It is always a very difficult subject, but particularly with a longtime patient like Susan who can be very frustrating at times. I also do not know how she will react. I do know that I don’t want her back in ICU on a ventilator and unable to be weaned from it because of her frailty. I do not believe that she should be resuscitated if that were going to be the result, and I hoped that she would agree, but I wasn’t so sure how I would handle it, if she did not.
Susan had smoked for decades only stopping after being intubated in the Intensive Care Unit (ICU) with severe pneumonia. Since then she has been on 24-hour oxygen, living almost a bed to chair existence at her daughter’s home. In addition, her lipids and blood pressure have never been adequately controlled due to her non-compliance, and she had two severe heart attacks that put her in the Cardiac ICU for several days each time.
When Susan came to see me, I was ready. Surprisingly and to my great relief, she wanted to talk about her remaining time. She didn’t want anyone making end of life decisions for her. She wasn’t afraid to be dead; it was the dying that “scared her to death.” She asked me to help her. I asked what she would want if she became really sick. She said that she wanted to be at home and only be put in the hospital if really necessary—no ICU or intubation. If I could not “tune her up,” she wanted comfort only, allowed to just fade away. I suggested she complete an advance directive in which she could document her wishes.
Susan agreed with me, but what if she hadn’t? What would I have said if she had wanted an all out treatment effort? How would I talk to her without manipulating her into doing what I thought best? How could I avoid being paternalistic or denying her right to autonomy, while knowing that the wrong decision could create a treatment nightmare for Susan and her family?
I was very lucky this time because Susan had already made rational decisions. She did not want to be afraid. I told her that I would honor her wishes . . . that was my job.
Now that Medicare will be reimbursing for end of life care discussions, more physicians will need to be asking themselves this question: How does a doctor talk to a patient, acknowledging and affirming the patient’s wishes, without controlling the outcome and pressuring the patient to do what the MD thinks is best?