I previously used the example of Chronic Kidney Disease to highlight how good data and IT is essential to constructing and running any successful disease management program. In this post, I am going to describe the rationale for and the tools needed for developing an effective End of Life Care/Palliative Care disease management program.
The importance of managing end of life care
A little background. Birth and death are the bookends of our existence. As a society, we tend to glorify all that is about birth, but patients, families, and even providers tend to ignore issues associated with death, often until it is too late to allow for a dignified end of life. Currently, approximately 55% of all patients dying in the United States end their lives in a hospital, often partly in the ICU.
It is well known that the vast majority of patients would prefer to die peacefully at home, surrounded by family, with their comfort and dignity intact. The good news is that slowly but surely, patients, families, doctors and other providers are getting around to recognizing that discussing end of life wishes before the actual end of life usually results in far better outcomes – namely, dying at home or in a long term care facility with hospice care or dying in a free-standing hospice.
Definitions: hospice care versus palliative care
Let me also clarify some terms.
- Hospice care is care delivered usually by nurses under the direction of a physician with a goal of reducing pain and other unpleasant symptoms toward the end of life.
- Palliative care is a broader term that encompasses the provision of a wide array of treatments directed at reducing unpleasant physical and psychological symptoms sometimes experienced by more medically complicated patients.
Palliative care may go on for longer than the usual 6 month window allowed for hospice care, and is often organized by a physician palliative care expert. The phrase “end of life care” refers to both hospice and palliative care, and any other services that might be added in.
A discussion worth having
Doctors often do not bring up the topic of end of life wishes with their patients out of their own discomfort in doing so, or their lack of training. Of interest, and contrary to popular belief, most older or sicker patients welcome the discussion if their doctors bring it up. The discussion about end of life wishes must include at least where the patient physically wishes to be, i.e. home vs. hospital, and whether or not they desire resuscitation should breathing or heartbeat cease. Most patients, if given a chance to express their feelings and anxieties, will not wish to be resuscitated if there is no chance or almost no chance of meaningful survival.
When should an end of life conversation be initiated
So this leads to my next point. How do we know who is likely to die in the next 6 to 12 months? It turns out that doctors have a pretty good idea of who is likely to die, and it also turns out that algorithms driven off claims and electronic medical record data can also predict with fairly good accuracy who is likely to die. The best approach brings IT driven algorithms and physician judgment together.
In practice, the way this works is that lists are algorithmically generated of patients predicted to possibly die in the following 6 to 12 months. These names are then brought to their primary care doctors, who can say “Yes” or “No” to the algorithmic predictions.
If the answer is “Yes”, the doctor is encouraged to bring the patient in to the office for a discussion to understand his or her wishes regarding their end of life care if this has not already occurred. This simple approach can substantially increase the number of patients with active Do Not Resuscitate (DNR) orders and requests for hospice or palliative care at the appropriate time.
I cannot overestimate the importance of this work. The ability to identify a patient, engage in a meaningful conversation about end of life wishes, and spare that patient a physically and psychically painful death in the hospital is of incalculable value.
I have purposely left out of my discussion the huge cost savings to the system in avoiding unnecessary hospital care at the end of life.
A successful End of Life disease management program requires leadership, powerful IT, a physician culture willing to have end of life discussions with patients, and the ability to track data on very ill patients. None of these are easy. But all are vitally important for any organization that wants to care for patients at every stage – from birth to death.