For Whom the Bell Tolls - End of Life Concerns Affect more Patients

I don’t know whether it is a bad few weeks for cardiologists or not, but a new article in the Journal of the American College of Cardiology (JACC) entitled How Medicine Has Changed the End of Life for Patients With Cardiovascular Disease spotlights a new area of concern for the specialty. Gina Kolata in the NY Times provides both an excellent summary and context. One of the triumphs of medicine is not our ability to cure as much as our ability to extend life, to convert acute death invoking problems, like heart attacks or HIV, into chronic medical conditions, treatable with medicine and supportive care. But chronic illness has at least three other consequences

• Increasing longevity results in increasing disability and frailty
• Increasing disability requires more care and resources
• Socioeconomic factors increase disparities in providing that care

The gist of the JACC article is that cardiologists, as a specialty, have done a poor job, in confronting and providing care for the patients they save but leave  chronically unwell. And while I will admit to a bit of schadenfreude [1] it is important to explicitly say that they are not alone among the specialist who fail our patients in their end of life - just the ones identified this week.

The difficulty for some of us, and again this is as true for my vascular surgeon brethren as it is for cardiologists once the excitement of a good procedural result is achieved, converting the acute problem into a chronic care issue, we lose interest. As I reflect on the JACC article, I realize that you could remove all references to cardiology and it would remain true; this is an article about the failure of medicine to confront the care we give to one another in those final days or weeks or months.

If you read the NY Times article, you will see that physicians talk about a trajectory of disease. This is an important concept to understand and share. Chronic illness is not dramatic like traumatic or a postoperative death, there is no sudden change; chronic illness is about the dwindles. Chronic illness means you fade away. Finding milestone in that fading, moments when it is time to talk about the end of life issues is difficult if not impossible. The article mentions that oncologists, specialists in cancer, may have an easier time with this problem because their disease trajectories are more consistent. That is untrue. All chronic disease has its good and bad days, perhaps not when measured on some absolute scale, but when measured on the day-to-day basis that patients experience.

The JACC article states “Advances in medical science have increasingly made health care providers the gatekeepers of death and dying.” That has always been our traditional role, to walk that path with our patients. Specialization for all its substantial advantages has made it easier for physicians to pass along that disquieting responsibility. A quote from the NY Times piece is for me, the most haunting. “Too often, no one takes ownership of the last stage of the journey with the patient.” I would add that too often this is ownership is thrown back upon primary care physicians letting them carry the emotional load.

It is time for many of us, especially among the specialties, to reclaim our role.  It may make us uncomfortable, it is not shiny like a procedure, but it is our role within society. Helping our patients to find comfort in their last days and moments is just as much a source of our professional status as the occasional opportunities we have to cure.

[1] Schadenfreude Great word, it means reveling in the misfortune of others, in this case, cardiologists. It is not our best human thought, but it does drive a lot of conversations.