Saturday, November 16, 2013

Room for Improvement

There are several things that have stuck with me from during the time that my dad was sick, things that I perceive as mistakes and missteps that were made in the care and treatment of my dad by others during his illness.

One of the main ones comes from what was done - or rather, what wasn't done - by his oncologist in the last couple of weeks of my dad's life.  

I sometimes read a blog called People I Want To Punch in the Throat.  It's usually entertaining and sometimes even thought-provoking.  Every time I look at the title of it, though, I am tempted to make up a list of my own of people whom I wouldn't mind punching.  Towards the top of that list would go the name of my dad's former oncologist.  

I recently read an article about the subject of doctors who desert patients who are in the end-stages of their disease.  This article made me think again about my dad's oncologist, whom, as I've said in the past, we really liked in the beginning.  So much so that our fondness for and our trust in him, along with the urgency of procuring treatment for the cancer which we understood from Day One to be very aggressive and the logistical challenges in getting Dad in to see other doctors, resulted in our not consulting with other oncologists in the area.  It was a one-and-done scenario.  Our second opinion came from the nationally recognized team of neuro-oncologists at Duke which stemmed from a referral from Dad's hometown oncologist.  Since my dad's death, I've wondered so many times whether I should have done something else to make it possible for other oncologists in the city where my parents lived to give their opinion on my dad's case - but that's fodder for discussion for another time.

We thought we were right in choosing the guy we chose to provide medical care for my dad.  What's really messed up is that, even in a critical situation like my dad's that should have been recognized and treated as such every step of the way, the inconsistent availability of even the nurse in the practice when we had questions or concerns, the slow call-backs, the wait-your-turn kind of attitude that was so clearly conveyed to us throughout the first eight weeks of Dad's illness was something we felt we just had to take.  Never did I question the service or the care being provided by anyone at the oncology group, even when I realized that they could have done some things better - more efficiently, more compassionately, and with more effort to help my dad.  I just took whatever they were giving out - even though it definitely affected my dad's quality of life.  My family and I were struggling more than I can even begin to explain with caring for my dad and dealing with the series of blows we were being dealt, and I guess I didn't have it in me to buck the system.  Still, though, from this vantage point, neither the way my dad was treated nor my reaction to the quality of the service provided to my dad sits right with me.  

Things were going ok as far as I could tell with our interactions with the oncologist, though, until a few days into my dad's second hospitalization.  As much of a warrior as I can be sometimes when people I love need my help, for some reason I didn't see how wrong it was for Dad's doctor to take several days off work for Christmas and then again a week later, as my dad was entering hospice, for New Year's.  I get that the man wanted to spend some quality time over the holidays with his family - but DAMMIT didn't he see that my family wanted some quality time too?  I have thought long and hard about it, but I still cannot understand how the guy just punched out for 85 hours (yep, I counted) TWICE less than a week apart, not even CALLING to check in on us at all.  I guess I thought that was ok - I didn't say anything about it then - but my thinking wasn't right then.  Now I know that it wasn't ok at all.

I understand that, as the article referenced above points out, sometimes an oncologist distances himself from a patient who is in the end stages of disease to protect himself emotionally. There is no doubt the job of an oncologist is likely to be depressing at times ... but that's what they have signed up for.  I consider a patient's relationship with his oncologist to be worth sticking out through the good times and the bad; I don't think there is any valid justification for an oncologist to let himself off the case (and off the hook) just because the treatment isn't working.  As Dr. Moynihan states in the article, “No physician should ever say there’s nothing more I can do. There’s always something more we can do for the patient — if only to be there and listen to their stories and deal with their pain and suffering.”

And to the point made in the article by Dr. Meier of Mount Sinai: Yes, it is failing a patient who has been under the care of a doctor when that doctor chooses to no longer be involved with the care of the patient at the end, especially when, as in the case with my dad, the oncologist plainly promises that he will continue to be involved and will call in a few days to check in and then doesn't.   

To be clear, I am not alleging any malpractice or a breach in the medical care provided to my dad by the oncologist or his practice; I am, however, saying that there was definite room for improvement, and the fact of the matter is that my dad and my family were hurt in other ways by the practices of and the choices made by the oncologist.

The oncologist in the article, who has written his own account of the difficulties of treating a dying patient, said he received no training at all in medical school about "how to interact with a patient" who had reached the end of oncological treatment. I believe this to be the case in most med school programs, and I think it's outrageous.  Here's what I know and what I think all medical people should know: some of the most impactful care that a physician or other health care professional can give to a patient and his family sometimes comes from something other than medicine.

I think I'm going to write a letter to my dad's former oncologist.  It obviously won't change what has happened, but maybe it will impact the way he treats other patients and their families in the future.

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