Family first? When a medical professional is also a healthcare proxy
April 22, 2014 § Leave a comment
By John Loughnane, MD, Medical Director of Commonwealth Community Care
Uncle Jerry was dying. It was clear to him, to me, and to my family. His health had been deteriorating for six months, and he was now sitting at Beth Israel Hospital with hepatic encephalopathy – his brain function was declining and his liver was not eliminating toxins from his blood. He had also developed a bowel obstruction that made the medications needed to treat his encephalopathy ineffective. And because he had always refused a liver transplant, the question had become not if he would die, but how and when.
During this time, I was Jerry’s healthcare proxy and a third-year medical student entrusted to see his wishes carried out. Jerry’s gastroenterologist had always been pleasant during his appointments, promising Jerry he would beat his hepatitis diagnosis. However, as Jerry became more ill, the gastroenterologist’s attitude changed. On the day I informed him that our family had decided to take a palliative/hospice approach, he became visibly angry. He threw Jerry’s chart in front of me and told me, “Read his progress note!”
The note was clear: reversible hepatic encephalopathy in context of end stage liver disease. I told him I understood what his note meant, but in my judgment, Jerry would not want to continue with this aggressive structure of care. He would not want the rectal tube and the antibiotics that would have to be delivered via this method. He hated hospitals, hated doctors. If he could speak, he would say he wanted to be comfortable and allowed to die peacefully.
Although I was not an expert in hepatitis, I was an expert in Jerry. This was a man who had lost the sister whom he had lived with his entire life just two months earlier. Following this experience, we discussed Jerry’s wishes with a unique clarity. Jerry was also a tremendously private person. His attempts to live with my father at our home had been unmitigated disasters. Once back in his own home, the constant diarrhea from the Lactulose he took was a humiliation. He often lost control of his bowels and required those of us looking after him to help bathe and clean him. He was constantly making trips to the hospital, outpatient clinics, and ERs and having to rely on others to attend to his basic needs. The life he once enjoyed had evaporated.
From the onset, the attending gastroenterologist used my position as a medical student to force me to reconsider my decision. He made me read the progress notes, hold meetings with my family, and he made it clear that he had no hope for me and my future as a physician if I could not see the correctness of his plan. In retrospect, it was abusive. There was no realization of the pressure and basic human sadness of watching my uncle die. Each of the multiple times he questioned my decision, it created undue pain and suffering for me and my family. There was no consideration of the difficulty of being both a medical professional and Jerry’s nephew. There was just the right – his opinion, and the wrong – my decision.
This situation is not unique. For all of us who have had to play this dual role of family member and medical liaison for a loved one, we know it is hard. How do we best advocate for our loved one without stepping on too many toes? How do we be an advocate without becoming one of “those families”? Although I have now gone through this too many times, each case has been unique, as unique as those whom I have loved and advised.
Each time I speak with a patient’s family member who is also a medical professional, I try to keep Jerry in mind. In some way, I hope to help them become part of our care team – always respectful of their medical knowledge and opinion, but creating an atmosphere where they can be a family member first. I hope I am successful.
To get back to Jerry, I eventually fired the gastroenterologist. He was shocked; I was relieved. Three days later, Jerry died in hospice with his family around him, just the way he would have wanted.