The capacity to give one's attention to a sufferer is a very rare and difficult thing.
-Simone Weil
The e-mail message about my long-term patient was disturbing.
In retrospect, her initial cancer treatment had been nothing short of a miracle. A large tumor of the mouth was completely controlled with a limited surgery and radiation therapy. When her cancer recurred again a few years later, treatment again came to the rescue. She did well for a long time.
Eventually, though, treatment side effects developed. Over the years, the problems caused by the aggressive cancer were replaced by problems caused by the aggressive therapy. She suffered.
In the months before I received the e-mail message, several physicians, nurses, and therapists had been involved in her care. Her weekly schedule was jammed with medical appointments.
One day, I received an e-mail from one of her friends telling me that she was dying and that the family was struggling.
“The family is under the impression you didn't want to see her anymore.”
I was stunned. I am a surgeon and it is true that I had nothing to offer her surgically. From my perspective, though, each office visit had involved extra time to review her options and discuss what was happening. I thought I had always tried to answer her questions. I was always careful to remind her that she could come and see me anytime.
However, I knew that our scheduled return appointments had gone from every few weeks to every few months to an open invitation to call if she wanted to return.
From her perspective, apparently, it was clear that I had given up on her.
As I re-read the message I wondered: Would she have felt differently if our office visits had become more frequent instead of less frequent as things became more difficult? Is it possible that an office visit is a sign of hope or an expression of caring?
I thought of my experience with this patient as I read Dr. Pauline Chen’s book, Final Exam: A Surgeon’s Reflections on Mortality. Writing about her dying patients, Dr. Chen laments, “I want to sit and linger with my patients but know that such inefficiency would never work in a clinical world. I want to soothe my patients’ suffering without the burden of knowing the inexorable future courses of their diseases.”
I am certain that I have the same anxieties as Dr. Chen. In addition, I struggle with the knowledge that each office visit generates a bill for which the patient is partially responsible. Medical care is expensive and I do not like charging people when I have little to offer. On top of that, there are only so many appointments available in my weekly clinic schedule. How do I see everyone who might benefit from an appointment?
No one should ever feel abandoned. My patient died a few days after I received the e-mail message. Her legacy is that I will somehow find new ways to accompany my patients as they approach the end of their journeys.
The following is feedback received for this blog:
Very nice essay.
Maybe that is why patients love the newsletters, patient receptions and your blog. It keeps that connection.
Could survivorship clinics possibly serve this need in a meaningful way?
- Kathy
Very thoughtfully written. It is a struggle to find a good solution. The visits may offer hope, but they can be costly not only in money but the time and effort it takes as the patient weakens. No easy solution.
- rlbates
http://rlbatesmd.blogspot.com/
Thoughtful article. As a psychiatry resident, I find that some 'stable' patients subconsciously take fewer visits as a sign of abandonment and some of them might even become sicker. My solution is simply to ask them, 'When do you want to come back?', and most of the time I'm able to go along with what they want.
On the other hand, it is worth considering how we as doctors bring much more than just medical treatment to the table. Yet, this 'other care' is often undervalued, (certainly by insurance companies) and we feel unable to help a patient when faced with an untreatable disease. This may not always be true.
- En Jay
Medical school, residency and our early years in practice imbued us with lots of technical expertise but our patients (and by extension their family and friends) teach us so much beyond that, we just have to make sure we keep listening to their message.
- Deborah Benzil
http://womenneurosurgeons.blogspot.com/
