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Cancer Communication Research Center
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Doctors, too, need to say good bye

Nekhlyudov

As a primary care provider with clinical and research interests in cancer survivorship, I am often in the company of my palliative care colleagues.  We share frustrations about the lack of conversations that occur between patients and their care providers at the end of life and how valuable palliative care consultations and planning may be.   Last week, I was suddenly thrust into a clinical situation that made me appreciate that palliative care impacts not only the patient and his/her family, but also the patients' primary healthcare providers.  

About seven years ago, I took over the care of a 65 year old man (let's call him Joe) whose former primary care physician retired.  Joe had poorly controlled diabetes, hypertension, and heart disease, among other medical conditions. While he was just mildly overweight, at his first visit with me, Joe announced that he had been working on gaining weight in order to qualify for a gastric bypass.   The rationale was that if he has a bypass, most of his chronic medical conditions would be resolved.   It took some convincing, but Joe ultimately realized that this was not a wise decision and gave up on intentionally gaining weight.  Unfortunately, this did not improve his adherence to a healthier diet and medications. 

For the next five years, he saw me regularly but insisted that he "was going to die soon anyway, so why bother changing now?"  Then he suddenly came to a surprising observation that despite his full expectation to die young, he was still alive.  "I should probably start doing something about it," he proclaimed.  He started insulin and began to be closely followed by an endocrinologist.  Over the next year, he made some progress but it was not until suffering another heart attack, being hospitalized for weeks at a time and staying in rehab, that he finally decided that it was now time to take care of himself.  And he did.  He was thrilled with the progress and his new outlook, and at his last appointment, he was full of life and even kissed his endocrinologist.  Unfortunately, I did not get to see this side of Joe as we did not manage to arrange an outpatient visit with me before he was admitted once again.   

Last week, Joe was admitted to a hospital with heart failure and was intubated.  Cardiology did not feel that his chances of recovery were likely and a palliative care team was called in.  The family was engaged, relaying that earlier in the day Joe motioned "I am done" and asked for the tube to be pulled.  The decision was immediate, the tube was pulled and Joe placed on a morphine drip.  Later that afternoon, the endocrinologist and I received an email from the cardiologist letting us know about the developments.  We were both surprised by this turn of events and independently rushed over to the hospital.   By the time we got there, Joe was on morphine, comfortable but non-responsive. 

We spoke with the family members and shared our stories with them, and they with us.  Yet we could not share the final laughs and cries with Joe.  Perhaps he heard us, but his stubbornness, his sense of humor and his charm were not there.  There is no doubt that Joe received tremendous care and benefited from the palliative care input.  But how about his outpatient medical team?  We missed out.  We did not get a chance to engage in the discussion with the family, but I think more importantly here, we missed an opportunity to see and spend time with the man that we got to know, appreciate and care for.  We never had a chance to say goodbye.   

Larissa Nekhlyudov, MD, MPH
Harvard Medical School/Harvard Vanguard Medical Associates

Written by CCRC at 09:28

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