I’ve commented in a previous blog on end-of-life issues, an area of critical importance to the many oncologists whose professional responsibilities bring them in contact with the dying patient. This week some new information came out from the Dartmouth Institute for Health Policy & Clinical Practice. The researchers used federal databases to review the records of more than 235,000 patients with metastatic cancer seen between 2003 and 2007, examining at the 40,000-foot level variations in end-of-life care. The results, while unsurprising to those who have followed this issue, are disturbing.
One of the basic principles of health care analysis is that when wide variations in patterns of care exist, the very existence of these variations point to problems in quality of care. For instance, if the hysterectomy rate is three times as high in one area as it is in another, there is something going on that isn’t quite right. Such variations are rife in the Dartmouth study: huge variations in the percentages of patients dying in the hospital, variations in the admission of terminal patients to intensive care units (as high as 40% in one city), and significant variability in the amount of chemotherapy administered at the end of life. These variations have no obvious cause rooted in medical science, and point to significant over-treatment of dying patients and under-use of hospice services.
Again, not surprising but disturbing nevertheless. In my own practice, telling patients that I am out of useful treatment options and that supportive care measures and the use of hospice services is the right course is the hardest task I face on a regular basis. Many of my patients (including one earlier today) flat-out refuse hospice care as “giving up.” There is no question, however, that I could do a better job preparing patients for this sad day, or any real question but that their end would be a kinder one if the preparations had been made.
At a national level, I suspect that we do not do a great job including this in the education of oncology fellows. Our health care system actively disincentives end-of-life discussions: remember the “Death Panel” ruckus in the health care debate, an insult to oncologists everywhere? The Dartmouth study reminds us that we have much, as individuals and as a profession, yet to accomplish in this area.
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Comments
Robert S. Miller, FASCO
Nov, 24 2010 6:59 PM
This is the third year in a row that a group of bloggers have participated in what is called a "blog rally" to promote the movement called Engage With Grace, which is about end of life care. The idea is that Thanksgiving weekend may be an ideal opportunity for families to discuss together these critical issues, even though the topic is hardly what most would consider appropriate for the usual family gatherings this time of the year. The Engage With Grace movement has an incredibly simple but powerful twist, embodied on a single page they call the One Slide Project. The idea is that families are encouraged to download the slide, answer the 5 questions about end of life preferences, and share the answers. Needless to say, health care providers should do the same for their patients (and themselves of course). If everyone really did that, we would be making a lot of progress, don't you think? I encourage everyone to take a look at their web site and understand their mission.
In response to Dr. Sledge's post above, I started thinking that maybe one very simple thing I could do would be to post the single slide in my exam room, or maybe include the material with the standard information packet we give to all of our patients. Of course, as an oncologist, I realize that my responsibility doesn't stop there, and these conversations require much dialogue often over the course of several visits.
I am wondering what other oncologists think about posting such a sign in the exam room. Would you do it in your office? How do you think patients would react, particularly if they saw it without context? If any patients are reading this, what would your reaction be if you saw this posted in your oncologist's office?
I know any "single slide" is not the answer to this huge problem described above. Maybe it is a way to start the conversation.
Antonio C. Wolff, MD, FACP, FASCO
Nov, 25 2010 10:37 AM
A very provocative reminder by Dr. Sledge of critical issues we oncologists face daily and must desperately handle better than we currently do. Barriers are many, from human nature to misperceptions and misrepresentations for political purpose of the work we do and the conversations we must have with our patients and their caregivers, and the all-too-familiar lack of adequate reimbursement for cognitive work that is not procedure-driven. Health care professionals by default want to do the right thing, and tools like the ones Dr. Miller suggest can be incredibly useful for us and for our patients. I will definitely learn more about it.