Ben Bryner -- The "hang-up" button on my phone is broken. It's several years old and most of the buttons require some firm pressure to operate, but the button with the little red phone is totally dead. For a while I was at the mercy of the person on the other end of the line; they got to decide when the conversation was over and how many minutes I used up and there was nothing I could do about it. Eventually, I figured out that there was another series of buttons I could press to get the phone to hang up, but it wasn’t very convenient.
I decided my phone is like the health care system (at least in the US); it lacks a good system for "end of life issues" just as my phone fails at ending calls. A stretch, maybe, but stay with me. Most of the time, patients are swept along by the formidable (if not always efficient) process that is modern medicine, and all the stops are pulled out in an attempt to provide the best possible outcome for the patient. But what to do when all our efforts are clearly in vain? Even when the patient knows exactly what he or she wants done for them, it's hard for the health care system to switch out of a maximalist approach to care. Surprisingly, the hang-up button was the only button on this phone that wasn’t absolutely essential to operating of the phone. Similarly, our health care system can move along fine for most patients, but when a patient needs something other than the full court press, suddenly things get complicated.
Hospice, a comprehensive institution devoted to addressing the needs of the dying patient, started in England in the 1960s. Aimed at those with terminal diseases who wish to change the goals of their treatment from curing their disease to making the most of one's remaining time and managing pain, hospice has grown in the U.S. and around the world. I toured a hospice in Ann Arbor during one of my rotations and was very impressed. But the problem is that hospice in the U.S. hasn’t really been integrated into the health care system, unlike in the UK, where many inpatient hospices serve a huge number each year at no direct cost to the patients. A health policy professor once described hospice as having been stuck onto the U.S. health care system like an afterthought, or an annex hastily added onto an already-finished building. Many terminally ill patients aren’t referred to hospice at all, or it isn’t brought up until far beyond the appropriate time. One of the statistics often cited is the proportion of people who die in an intensive care unit (ICU): one in five. Clearly, some of these patients would have preferred to spend their final days at home. Really, of all the places I spend much time, the ICU is the least like my home. And although the lighting's much better in the ICU, it's not as quiet or comfortable as my place -- which is why most hospice care is given in the home.
As it stands, hospice hasn’t become a comprehensive answer to the problem, any more than the series of buttons I pressed to hang up my phone was a permanent answer to my broken phone. None of this is to denigrate the good people involved in end-of-life issues -- there is one surgeon in particular at our VA who leads a team of palliative care specialists who do terrific work and are tirelessly raising awareness of these issues. One of my VA patients had a very unfortunate diagnosis, but having them get involved in his care while he still had time to have a say in his plans for death was truly a silver lining.
Of course, my phone has an easy fix; I can get rid of it and get a new one. But all doctors can't just outsource their end-of-life problems to palliative care specialists; there aren't enough, and all of us from pediatricians to geriatricians have to deal with terminally ill patients and help them manage their final days and weeks. Assisting our terminally ill patients is much more complicated than just calling in a consult. (The standard reading giving the physician's perspective on these complex issues is David Eddy's "A Conversation with My Mother").
Addressing the systemic problem of allowing the terminally ill to die in the way they choose will require innovation, commitment of new resources, and action from concerned physicians throughout our careers. Graham has touched on this issue in his excellent "Health Care's Broke" series. I recommend it -- if you're on call right now, make your fellow student take the next admit while you read the whole series. Thank me in the morning.
I couldn't agree with you less. I realize that you are speaking from your experience, but your use of the third person is sometimes misleading. There are medical schools and administrator that beat students with the idea that the must be compassionate to patients and then are anything but to their students. This is a fact for some of us. If I sound angry, it's because there is no outlet for some of us and articles expressing opinions such as yours almost whitewash the very real and insidious nature of 'sink or swim. respectfully, James
Posted by: James | Apr 11, 2008 12:38:46 PM
Uuuh, James what does the treatment of students by administration or med schools have to do with his article? Not the appropriate article to use to vent your apparent frustrations-- but sorry to hear you're going through it.
Good article Ben.
Posted by: | Apr 15, 2008 1:12:21 PM
Nice article Ben.
It just touched a tingling nerve in me which had gone sore recently when nobody in my institute (VP Chest Inst., India) really knew how to deal with the end-of-life problems of a 23-year old boy dying of ILD.Unfortunately, I had to deal with it the most, as I was posted in the ICU during his last days. We had a number of discussions, whether to let the boy leave the ICU and be with his parents or prolong the painful last days as long as we could.I realised that the decision was really difficult because we hadn't talked about it to him or his parents...nobody had prepared them on this issue even though we saw it rushing down at us in the future. Now, I am trying to learn more about this issue,as I plan to work in critical care in the next few years .It's still a hush-hush topic in India.
Hope to work with better decision makers and learn more.
Posted by: Neelima | Apr 19, 2008 4:46:46 AM
nice article Ben.
Posted by: Sarah | Apr 30, 2008 10:51:53 PM
The comments to this entry are closed.