While I was on my family medicine rotation, a patient case really made me think about the role of a physician. The patient was a fifty-year-old woman with a diagnosis of primary sclerosing cholangitis. She was diagnosed in 2014, but by 2018 she was needing a paracentesis every two weeks and was told she would need a liver transplant. Her primary care physician in the family med clinic had followed her throughout this time. She informed me that the patient was put on the liver transplant list and had the full workup for transplant. However, after being on the transplant list for a few months, she admitted to her physician that this was not what she wanted, but felt she had to do what her family wanted her to do. She was comfortable telling her this, because of their ongoing relationship and the trust that was built.
The physician set up a time to meet with the patient’s family and friends and had an open discussion with them. The physician took many hours of her time to explain to the family the patient’s options without a transplant and what to expect for whatever options she chose. She encouraged her patient to continue to have open communication with her family and friends as to what she wanted for end of life care. This was very important for this patient, because her friend was able to understand exactly what kind of care she wanted and supported the patient in her decision, whereas her family could not get on board with her decision. It was important to the patient to have her friend become her medical POA, so decisions could be made in her best interest. This was especially important for this patient, because she was admitted for multiple episodes of altered mental status, so her friend could advocate for what the patient wanted.
When I saw the patient for the first time during my first week of family medicine rotation, she was alert and oriented, although with obvious ascites and asterixis. At this visit they were discussing how hospice care would be a good option for the patient. Initially, the patient was resistant to this idea, but the patient’s friend encouraged the patient to consider it. Two weeks later when she returned to the office, the patient was lethargic and wheelchair bound. It was incredibly sad to see such a difference in her health between two visits. The physician discussed with the patient and her friend how hospice care would be helpful in maintaining quality of life and the physician offered to continue care through home visits. The patient and her friend were very excited to hear about the home visits, because it was important to them to have that continuity of care.
This case really reminded me that the job of a physician is to help the patient understand their condition and options so they can make an informed decision. Once they make their decision it is the physician’s job to support them and see them through, even if they don’t understand their choice. Although it was difficult for the physician to see her patient’s condition worsen so quickly, she continued to support her, maintain her quality of life and provide resources as needed. I could tell how much the patient appreciated having the support of the physician during such a scary time.
This experience showed me how important it is to have these end of life discussions with patients and ensure their wishes are known. My goal is to have this discussion with at least one patient during my intern year with an attending supervising, so I can receive feedback. It is a difficult discussion to have with a patient and practice will be important.