Tuesday May 03, 2016
FPs Can Be Trusted Guides When the Dying Don't Specify Wishes
Each day when I walked into his hospital room, I greeted him with, "Hello there, Mr. Gold! How are you?" His cerebral amyloid angiopathy, resulting strokes and severe dementia had left him chronically debilitated and nonverbal, but his gazing eyes were enough for me to acknowledge our shared humanity.
For nearly a month, I took care of him on our inpatient service, treating him through seizures, aspiration pneumonias, intubations and extubations. I learned at his funeral service that he had gone by the nickname "Cuz," and when asked by the pastor to give a few words, I admitted that I had not had the benefit of knowing my patient in his prime. However, I had the distinct honor of helping him through his final days. And I was inspired by the love his family showered on him.
Every day, I sat down with Mrs. Gold (not the family's real name) and discussed the care plan, hopeful that her husband could return home to her capable care. But as his situation progressively worsened, it became clear that he might not ever make it home from the hospital.
She struggled with granting an "allow natural death" status that would forfend the high-caliber interventions that were becoming more and more futile. The only direction she had received from her husband on this difficult topic before his illness was that if his heart stopped, he wanted to be brought back.
Never mentioned in their conversations was a scenario in which he had progressive dementia and organ failure. Never discussed was the option of withdrawing care in the context of loss of dignity and quality of life.
So, in this situation neither of them had foreseen, she was doing her best to extrapolate what his end-of-life preferences would be from the minimal information he had imparted.
Reluctantly, she agreed to press on with full code interventions. By the second intubation, the palliative care team and I discussed with her the option of in-hospital hospice, where he could be extubated and spend his final days in the company of family without invasive tubes, lines, bells and whistles. He passed there peacefully, but his family's ordeal may have been less traumatic if he had made his wishes clear.
The Health is Primary campaign released patient materials earlier this year that discuss palliative care and advance directives, and American Family Physician has a collection of journal articles related to end-of-life care that include content for patients as well as physicians. These tools can help your practice and your patients with end-of-life discussions.
Often, family members are put in situations that require them to make decisions on behalf of their loved ones. Sometimes they disagree on how these decisions should be made or carried out. Difficult conversations can often be managed skillfully by family doctors who have developed trust and intimate knowledge of those they care for. Being able to give people a wide array of options is an honor. Putting the needs of those we serve above our own is an even higher honor.
Helping Mrs. Gold through this process was deeply inspiring for me. In the closing paragraphs of Mr. Gold's funeral service program, she quoted an anonymous poem: "So I gave to you life's greatest gift, the gift of letting go."
It's worth noting that a growing number of dying patients will soon have the ability to control their fate, allowing them to experience a far different process than my patient in Maryland. A new law in California(www.familydocs.org) that goes into effect June 9 will allow qualified patients the ability to self-administer a prescribed medication to aid in the dying process. For many, this would be preferred to the common hospital scenario of prolonged suffering, often alone.
The California AFP has responded with a set of resources(www.familydocs.org) that includes a series of four podcasts (each less than 10 minutes) on end-of-life conversations, an American Board of Family Medicine Part IV (Performance in Practice) Maintenance of Certification Module, a guide to weaving palliative care into your practice and additional information on the new California law (which is similar to laws already in place in Washington and Oregon).
Richard Bruno, M.D., M.P.H., is the resident member of the AAFP Board of Directors.
Posted at 10:12AM May 03, 2016 by Richard Bruno, M.D., M.P.H.