THE NEW YEAR, MEDICARE & ADVANCE DIRECTIVES

In a Medicare policy taking effect January 1, the federal government will cover “voluntary advance care planning,” and pay doctors for end-of-life conversations with patients. This is smart, far-sighted and compassionate policy, and though it essentially is but one item in a schedule of payment rates for thousands of medical services, I’d like to think it will encourage better and earlier doctor-patient communication.

In this voluntary planning, patients can hear from the doctor about preparing an advance directive, which anticipates a time when the patient cannot make informed decisions and provides the care team with a clear sense of the patient’s wishes. The benefits should be obvious.

And yet news of the new policy has been simmering in the blogosphere and cable news over the holidays, and could heat up after New Year’s. It might be useful to remember, as an editorial in the Minnesota Star Tribune put it well: “Advocating end-of-life care planning does not equal end-of-life advocacy. That critical distinction is deliberately buried by irresponsible health care reform opponents in the long, ludicrous debate over nonexistent death panels.'’ (http://www.startribune.com/opinion/editorials/112575299.html)

Even for the best care-givers, conversations about the dying process are difficult, and yet they are crucially important to a patient in making smart and informed decisions. Often these topics are put off till close to the end, when there’s no longer any avoiding them, and when the patient has diminished comprehension. Care is best when the doctor clearly understands the patient’s wishes, and the patient understands what is possible and what is not.

Dr. Maria J. Silveira of the University of Michigan found in a study that many patients had “treatable, life-threatening conditions” but lacked decision-making capacity in their final days. The new Medicare coverage adds incentive for doctors to learn a patient’s wishes before a crisis occurs. Dr. Silveira told the NY Times she might ask a person with heart disease, “If you have another heart attack and your heart stops beating, would you want us to try to restart it?” A patient dying of emphysema might be asked, “Do you want to go on a breathing machine for the rest of your life?” And a patient with incurable cancer might be asked, “When the time comes, do you want us to use technology to try and delay your death?” (http://www.nytimes.com/2010/12/26/us/politics/26death.html?pagewanted=2&_r=2&hp)

Oregon has engaged end-of-life issues as few states have, and Oregonians “understand that end of life planning is about keeping control of choices about life-sustaining treatment where it belongs -- with the individual, not with the government, physicians or hospitals.” ( http://www.oregonlive.com/opinion/index.ssf/2010/12/end_of_life_care_resuscitated.html)

With the new policy, patients gain knowledge and autonomy. Doctors get a nudge and an incentive to begin this conversation while the patient can still participate in it, and perhaps also improve their own communication skills.

THE LAST PLACE

A population that is living longer and dying slower is imposing a burden on care givers and exposing a weakness in the entryway to hospital care. Emergency Departments are poorly prepared and apparently even reluctant to care for those at the end of life whose presentation is unspectacular. These poor souls have inspired a new word: subtacular.

Subtacular was coined by the authors of “Trajectories of End-of-Life Care in the Emergency Department,” a British study published in the December Annals of Emergency Medicine. The word refers to an aging population who arrive at the ED needing care that is palliative, not resuscitative -- that is, needing care the ED is ill prepared to deliver. Spectacular gets life-saving attention; subtacular is hidden in a corner and paid little mind.

“Trajectories” paints a picture of neglect for the untreatably dying, with regard for the patient disappearing once stabilized. After discussions to discontinue treatment, and a Do Not Resuscitate order written, patients and family were essentially ignored, and found a quiet place out of the way of the ED’s “real” work. Sometimes the family’s first realization that no therapeutic options remain comes via ED staff they’ve just met. And emotional support was not a hallmark of the ED studied.

The study was of a single urban teaching hospital, and did not presume to generalize its results. More generally, Annals of Emergency Medicine also reported that in the past several years, palliative care increasingly has been taught to emergency personnel at hospitals in several American cities. This is certainly a positive sign of necessary change.

I’m struck by “Trajectories” in a number of ways. One is language. The study says most ED patients are considered spectacular, or "candidates for intensive life-preserving treatment." By contrast, the subtacular often suffer from chronic illnesses. ED care is trained to run to the next pressing medical need; emotional support at end of life loses out to a life that might be saved.

So here is a category of patient lacking even an adequate term to describe -- which perhaps also speaks to the neglect. But while subtacular might fill a need in a medical study, it’s coldly clinical medical-speak of little use outside the profession.

Given the aging public’s fairly widespread wish to die at home, the ED seems the last place to send a person who is imminently dying with nothing left to treat but pain. While “Trajectories” points out a need for palliative training in the ED, it also highlights a “dumping ground” reality of the ED as a place we send those we don’t otherwise know what to do with. We should know.

ED isn’t the only place palliative training is needed. Signposts in the dying process aren’t always clear, even for specialists, and yet the care facility shouldn’t routinely resort to an ambulance to the ED. With a patient at the point where all that’s available is comfort care, in a population that’s living longer and dying slower, why aren’t palliative specialists more common?