End-of-Life Decisions Rip Apart Then Reunite a Family—and Offer Lessons for a Future Physician

AUTHOR:
Josephine W. Thinwa, MD, PhD

CITATION:
Thinwa JW. End-of-life decisions rip apart then reunite a family—and offer lessons for a future physician. Consultant. 2016;56(11):1026-1027.

Like many other students, I marched into medical school reminiscent of a chivalrous knight in training: ready to treat, cure, and save lives. As I read and listened and observed, I gradually learned about the various ordnances that have been developed to conquer disease—and, in the process, lost sight of the fact that dying is an inevitable part of life. End-of-life care was a phrase doctors threw around, not students.

And then in my third year it happened: I was assigned to the palliative care team. Suddenly, dying became very real, as did the challenge of caring for dying patients while simultaneously comforting their family members. I came to understand the power of being a good listener and a soother, not only a solver.

Palliative Care: A First Look

My introduction to the art of providing patients and families with quality end-of-life care involved an 86-year-old decorated veteran who was about to take his final salute. Each day, his 4 adult children came into the hospital, aiming to spend as much time as possible with their father, whose mind and body were so clearly deteriorating. Optimism and science were no match for the recurrent urinary tract infections complicated by inoperable nephrolithiasis that had taken their toll on his mental state and had left him bedbound and unable to communicate or swallow food.

The primary medicine team had exhaustively explained to the siblings that despite all medical interventions, their father’s health was deteriorating. In fact, vigorous antibiotic therapy had left him vulnerable to recurrent bouts of Clostridium difficile diarrhea. The team had further explained that his marked weight loss and greatly altered mental status indicated only one thing: Their father was dying. It was time for the palliative care team to intervene.

After further reviewing the patient’s case and having spoken to the siblings individually, a family meeting was scheduled for the following week. My guiding principal was that the focus had to be on the patient’s wishes, and of course, on his current physical and mental state. As I gathered my thoughts on how best to comfort and advise the family, they were encouraged to reflect on their father’s life and ponder about the future goals of his care. More than anything, the palliative care team wanted the family to feel a sense of peace over their decision.

Difficult Family Dynamics

The following Monday, I mentally prepared for the difficult discussion that I was about to lead. In my naivety, I hadn’t thought about the possibility of dissent. As I entered the patient’s room, I expected to greet a family united by one decision, but instead I felt the siblings’ anger and frustration permeating the room. As we talked, it became clear that the family was conflicted—within themselves and also with each other.

I learned that over the weekend, dissention and conflict about where their father should be transferred had brewed so intensely, it had ripped the family apart. The sons felt that a long-term care facility would be most appropriate: Their father would get around-the-clock assistance, which would help ease the burden of his care for the family. On the contrary, the daughters felt that coming home to familiar surroundings and to his ailing wife of more than 50 years was the best option for their father. My task now shifted to ensuring that the family members stayed for the meeting.

This unexpected dissension was daunting for a medical student. But I was determined not to fail to advocate for my patient. Repeating their father’s dire outlook would not help; I needed to help them somehow put aside their differences and focus on his wishes.

Even though I was unsure of what to say, I turned to the older son and asked, “What does your father love to do?”

A smile immediately lit across his face. “He loves sitting in his favorite chair, holding Mom’s hand, watching Jeopardy.” He added that his father had glued a photo of his Vietnam buddies on the timeworn television. A moment of lightness went through the room as everyone—maybe even their unconscious father, I wanted to believe—chuckled.

“Today is about honoring your dad,” I said. “I am sure nothing would do that more than seeing his children together.”

After some coaxing, all but the younger brother, who politely asked for some time alone, agreed to join me in the family meeting room. It was a start.

A Family Unified—Eventually

In the family meeting room, a fog of tension separated the 3 siblings. Having been made aware of the conflict among the siblings, the palliative care attending physician had eased into the meeting with brief introductions. Though wary of how the conversation might escalate, he invited each family member to share their understanding and expectations about how best to accommodate their father’s current health.

The sisters ventured first, each echoing the other’s responses. They spoke of how much time they had spent with their father through his illness, including accompanying him to the hospital numerous times in their brothers’ absence. Tearfully, they acknowledged that their father was dying, and they wanted to ensure that his last days were as comfortable as possible. The older sister, who was also the health care proxy, added with conviction that their father had always wanted to be at home with his wife when his time came.

“Honoring his wishes now is all that matters,” she said.

“I don’t want Dad to die,” the brother added between sobs. Then, directly to me, “Is my father going to get better?”

I was caught off guard. “Unfortunately, no.”

The palliative attending physician added that although we could not predict with full certainty how much time he had left, our job was to make sure that he lived the remainder of his life with dignity and respect.

Silence followed as the family processed the information.

“In my heart, I know that Dad would be happy next to Mom, at home, watching Jeopardy,” the brother finally said tenderly. “I was being selfish and did not want him to go.”

He then stood up, walked across the room, and embraced his sisters tightly as they sobbed in his arms.

I held back my tears. I wanted to tell them, “All will be well,” but I had no proof. We all knew he was dying. In that moment though, I surprised myself by feeling a bit of joy. Even at the end of his life, this father had given his grown children a gift—a chance to reunite and do what is right. By acting selflessly, the siblings had come to a consensus that would be the difference in how their father spent his last days.

Over the next few days, I met with the social worker to prepare for the father’s hospice care and to ensure that the man’s home was equipped with all the necessities to comfortably accommodate the transition. I also stayed close to the chaplain as he provided much-needed spiritual guidance and counseling for the family. By the end of the week, my patient was transferred back to his home with hospice care.

An Important Lesson

As I advance through my medical education, still trying to save the world, I now have a better understanding and appreciation of end-of-life care and the complexities that surround the dying process. Addressing family needs and providing support and frank dialogue are as important as taking care of the dying patient. I have also learned that embracing death as a natural process is a step toward becoming a better physician—one who can rightfully and with clarity advocate for the wishes of all of my patients.

Josephine W. Thinwa, MD, PhD, is a second-year internal medicine resident at the University of Texas Southwestern Medical Center in Dallas.