I was just listening to Pat Buchanan on Hardball insisiting death panels would visit your house and insist on your agreeing to forego treatment if you developed cancer.
So, I thought I'd reprint this article and a few more links on end of life care for those of you who would like to have something with which you can shut people like Pat up.
It was originally published in the Pittsburgh Post-Gazettea year after the Terry Schiavo fiasco.
I am an intensive care physician. My days are mostly spent working with a dedicated, caring team resuscitating people from septic shock and respiratory failure back to health.
Unfortunately, many of our patients, already near the end of life with serious advanced illnesses, would not want and will not benefit from these heroic measures that we've inflicted on them -- but the paperwork and orders necessary to prevent them are not in place.
In these cases, we work, a bit too late, to put things right and to do right by these people who entrust us to do our best for them. We are privileged to help those who will get better and to comfort those who will not. But we can do better.
An advance directive specifies two things: what we want health-care professionals to do if we become terminally ill or permanently unconscious and whom we want to make those decisions. If either of those two things had been in place for Terri Schiavo -- who died one year ago in Florida after years in a coma -- her care would have been directed as she wanted or by whom she wanted, and precluded the involvement of the courts, the federal government, the media and the nation.
Most end-of-life cases are handled amicably and compassionately among the physician, family and patient. Discord occurs fairly often, but open, honest communication usually results in a consensus of what the patient would want, and court involvement occurs rarely.
The classic cinematic scenario where the lead character is diagnosed with a terminal illness and given six months to live is mostly just a movie screenwriter's contrivance. Most people who are clearly expected to die, wish to have no artificial life support and to not die in an intensive care unit. They want to live as long and as comfortably as they can and not to burden their loved ones. We generally do not need an advanced directive in these situations.
On the other hand, most people die of chronic progressive diseases like chronic heart and lung disease or Alzheimer's disease. In addition, many cancers now behave like chronic illnesses, with many years of quality life (or even a normal life span). There may be hospitalizations or bad spells, and a progressive decline in health, and these diseases are ultimately fatal, but when?
You can speak for yourself now, but, if you are ill in the hospital, you may be on life support, delirious and too weak to be able to really understand the situation or communicate your wishes. We want to know what you would want. Let someone know.
Recently, The Hastings Center, a leading bioethics research institute, issued a report declaring advance directives a failure for several reasons. Advance directives focus on what we do not want (i.e., life support) as opposed to what we do want. Only 20 to 30 percent of adults have completed them. The instructions are limited to terminal illness and permanent unconsciousness; gray areas are not addressed. Most importantly, an advance directive is not actionable.
This means paramedics or doctors will not honor a directive unless they know you have been declared terminal, and two physicians document this somewhere, and your new physician has access to this document.
Therefore, the "default setting" when someone presents to the hospital is to "do everything." If we collapse on the golf course or at the mall, we generally want to be resuscitated, get better, go back to our lives. If on the other hand, we have an advanced chronic illness, we may not want the resuscitation. Unfortunately, the current system using advance directives does not address these problems.
The Hastings Center report recommends an actionable paper form called a POLST, which specifically directs what you want. Do you want everything done, or no resuscitation, or no life-sustaining measures, or some middle ground? The POLST -- Physician's Orders for Life Sustaining Treatment -- is successfully being used in West Virginia, New York and Oregon, and is being tried in some areas of southwestern Pennsylvania.
Many professionals concerned with end-of-life care are pushing for it to become part of an update of Pennsylvania's advance directive laws. This actionable and portable POLST form allows emergency medical technicians, nurses and other physicians, to read and follow its instructions. Under the current system, if I have a discussion with a patient and family in the hospital and they decide against life support, or resuscitation, I write this order in the patient's chart. This order remains in effect until changed or the patient leaves the hospital.
If the patient sustains a cardiac arrest in the ambulance, on the way home or to the nursing home, the order is ineffective and resuscitation is undertaken. The ambulance may return to the hospital emergency room, where the do-not-resuscitate order is no longer in effect, and off we go, down an unintended path. Conversely, a do-not-resuscitate order written in a nursing facility does not transfer when the patient goes to the hospital. Unfortunately, in spite of a recently passed out-of-hospital do-not-resuscitate order law in Pennsylvania, there remains no commonly used method to prevent life support measures being applied outside of health care institutions.
Just as legislating advance directives was not a complete solution, Legislating POLST in Pennsylvania must be part of a statewide program to foster communication, improve knowledge about end-of-life-care issues (for the public and health-care providers), and then provide ongoing monitoring and feedback about how effectively we honor the wishes of those for whom we care.
The Governor's Task Force on Quality End of Life Care will soon issue its report and it is expected to include a recommendation to adopt the POLST form for use in Pennsylvania. It is our best hope for making it possible for us to do our best for our patients and loved ones, rather than just "doing everything."
First published on April 2, 2006 at 12:00 am
[Amazingly enough, we are still awaiting word from our Department of Health on whether we'll be able to use POLST in Pennsylvania! - cmhmd]
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These pieces written by Gary Rotstein, health reporter for the Pittsburgh Post-Gazette are also very useful:
End-of-life questions often go unasked
Disabled Worry Lives Not Valued
Two more recent op-eds in the Pittsburgh Post Gazette of note:
The last days of our lives: Our health-care system needs to provide better, more thoughtful end-of-life care.
Wednesday, August 26, 2009
By Dr. Robert Arnold and Nancy Zionts
Sunday Forum: Forget the euthanasia talk -- end-of-life care is neededIt's time to debunk the misconceptions about provisions in the health-care reform bill, says RAFAEL J. SCIULLO
Sunday, August 23, 2009