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Friday Dec 13, 2019

End-of-life Care Is as Important as All Care Preceding It

I first thought of going to medical school to become a doctor because my 10th-grade anatomy teacher recommended it. I was completely enamored with the human body, all that it does and the ways in which it can thrive or fail.

[Young person's hand holding an older person's hand]

I remember asking him, "In what kind of job will I be able to work with the human body every day and solve the mysteries of disease?"

"I think that medical school might be the path for you," he said.

In that moment, my mind was set that I would go to medical school and become a forensic pathologist.

Dreams of becoming a forensic pathologist aren't typically what you hear about when someone tells you they want to be a doctor, but my goals ran deeper than just the medicine. I recall reading stories about unusual deaths, crimes and unsolved cases. Then I would read the follow-up stories after a forensic pathologist helped solved the case. Of course, solving the case was probably a great feeling, but bringing closure to families in those challenging times is what captivated me. My journey took some twists and turns while I considered surgery and obstetrics and gynecology until, ultimately, I found my love for family medicine.

Fast forward 15 years from my high school conversation and here I am, a third-year family medicine resident. When I chose this specialty, I didn't know that my story would come full circle. I am solving daily mysteries: What is the diagnosis? What is the best treatment plan? How do patients get medication without insurance? How do patients make it to appointments without transportation?

What I didn't expect was that by chasing my dream of becoming a family physician, I would still be a part of crucial moments surrounding death and dying -- the very thing that led me to the profession in the first place.

Throughout my training, I have had the opportunity to rotate with our palliative care team and spend time at a local hospice facility caring for patients. I was fortunate to learn from physicians who were working to help patients and their families achieve the best quality of life, however they defined that for themselves. They empowered me to have honest and open conversations with my primary care patients regarding end of life and reminded me that family physicians often provide this care just by virtue of our lifelong relationships with our patients.

I gained many new skills during my time with these physicians, and my knowledge and skillset was put to the test just a few weeks after these rotations ended. One of my patients came to me to discuss the likely prognosis of a disease she had been diagnosed with prior to my meeting her. We spoke at length about what her diagnosis meant, the common trajectory of her disease and what her options would be moving forward. At that point she was tired of her pain, feeling fatigued, and wanted to live to see her grandchildren grow up and be happy.

We discussed options, and she chose to pursue a liver transplant. I helped coordinate her care and start the process of getting on the transplant list.

Then we waited. Two months went by, and I kept receiving updates about her care plan and where she was in the process. She was being cared for by a great group of physicians, and I was happy that she was pursuing a chance to extend her life and possibly ease her symptoms.

Then one day I saw her name on my office schedule with the note "discuss liver transplant." "That's strange," I thought to myself. She had an entire team of physicians she could pose questions to, so I couldn't help but wonder what she would want to discuss with me.

I entered the exam room, and she looked exhausted and anxious. She didn't look like the spritely, jovial woman I had seen before. I greeted her, and without hesitation she blurted out, "I don't want this liver transplant anymore!"

I walked over and sat next to her.

"That's OK," I said. "Tell me more."

She told me more. A lot more.

We sat together for 40 minutes and talked. We both grasped an understanding of what was important to her in life. Was it longevity versus quality, experiences or any combination of things? We discussed her dreams and goals, both short- and long-term. We talked about fears, including surgery and dying. We discussed her family and the guilt she felt about turning down a potential new liver.

Ultimately, we discussed what would make her happiest and most at peace. Her answer was "to not have surgery or be poked and prodded anymore."

I made a referral to hospice that day. During the next three months, alongside hospice care, I was able to help manage her symptoms, and find ways for her to get out of her house and do what she wanted most, which was spend time with her grandkids.

When she went into the hospice facility on a Friday afternoon for an acute issue, her family called me and kept me updated. I stopped by on my way home to say hello to her and check in with her family. That night her family texted to let me know she had passed.

In our culture, people often focus so much on how incredibly advanced medicine is that we forget to ask patients what is important to them in their lives, what will fulfill them and whether "doing everything" we're medically able to do truly makes for the best outcome in the context of what is meaningful to them. What still gets me is how little we discuss death and dying when it is ultimately what we will all experience at some point. We so often discuss the possibilities in medicine -- of getting cancer or having a disease -- but we rarely talk about death and dying when we know that it is the one thing that is certain.

I am so honored to be a part of all aspects of life, including death, with my patients. The amount of trust and openness that patients give is beyond words, and never in my dreams did I imagine that I would be so fortunate as to have a job where I would be invited into these critical and vulnerable spaces to be a part of their journey.

End-of-life care is just as important as all the care that precedes it. We are in a unique position as family physicians to partake in this time and these discussions, and we should take full advantage of that for our patients' sake.

Kelly Thibert, D.O., M.P.H., is the resident member of the AAFP Board of Directors.

Posted at 11:56AM Dec 13, 2019 by Kelly Thibert, D.O., M.P.H.

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