Wednesday, August 19, 2009

Advance Directives, not "Death Panels"

The Sunday New York Times, August 16, 2009, has a plethora of health-reform-related articles and opinion pieces, including an op-ed by President Obama himself (ok, signed by himself), which articulately makes the case for health reform, (“Why we need health care reform”, It includes a re-statement of his most important, and correct, point: “…what’s truly scary — truly risky — is the prospect of doing nothing.” This point is driven home by the lead editorial, “Lining up for help”, , which itself is a commentary on the article from August 13, 2009, “Thousands line up for promise of free health care”, It describes the efforts of Remote Area Medical, “…which was formed to deliver care to Indians living in remote areas of the Amazon basin…” to deliver care to thousands of people at the Forum in Inglewood in Los Angeles. Not to Indians in the Amazon, not to refugees swarming in from abroad, but to Americans living in one of our great cities.

And Los Angeles, of course, is not alone, not by any means. Barbara Shelly writes in my local Kansas City Star (, about the story about thousands of people waiting to be seen in a traveling clinic in Wise, Virginia. She talks about the Southwest Boulevard Family Health Care clinic here in Kansas City, KS, where the medical director, my friend and colleague “Dr. Sharon Lee telephones friendly specialists and pleads with them to treat her uninsured patients with potentially life-threatening conditions.” To not recognize that such situations are not only daily occurrences all over the country, but that the number of people being affected by them grows daily, that President Obama’s assertion that the worst outcome would be to keep our current non-system , is irresponsible, wrong, and when done knowingly for political gain, evil. I addressed this in a recent blog entry, “Health Care Shoutdowns: Liars and Demagogues” (August 11, 2009), and the inflammatory lies continue even as the facts show them to be such.

“In the coming weeks, the cynics and the naysayers will continue to exploit fear and concerns for political gain,” the President writes, but they already are. Sarah Lyall of the Times reports from London (“Health Care in Britain: Expat Goes for a Checkup”, Sarah Lyall,
on the efforts of Investor’s Business Daily to disparage the health reform movement by comparing it to the British National Health Service, and stating that famed physicist Stephen Hawking, who suffers from amyotrophic lateral sclerosis (ALS, “Lou Gehrig’s Disease”) would not be able to get care if he lived in the UK. Of course, the problem is that Dr. Hawking does live in the UK, and has issued a statement saying that the NHS has kept him alive! (You can look at the link provided by Ms. Lyall,, but you won’t find IBD’s assertion there as they have pulled it from their article.)

One of the most irritating lies to me is that of the “death panels” that are called for in the administration and congressional health reform bills. Despite the fact that no such panel was ever called for in the bill, a point explicitly made by senior Republican Senator Charles Grassley when he noted that the end-of-life discussions provision had been dropped by the negotiators because of the misinterpretation of it, the liars and demagogues continue to press the point, led by former vice-presidential candidate and now-former Alaska governor, Sarah Palin: “Palin stands by ‘death panel’ claim”, (Matthew Daly, Associated Press, ). Why I am particularly irritated about this is that it misrepresents a really important health care issue, one that we all need to think about: end-of-life care. It also misrepresents how decisions on limiting access to unproven treatments would be made. I have previously addressed the latter at some length (May 12, 2009, July 5, 2009), and probably will again, but today want to talk about the former.

The legislation under consideration (specifically HR 3200) said that the plan would pay for voluntary consultation with a physician about end-of-life care. We should all be thinking about end-of-life care. If and when we are diagnosed with a terminal disease, or are in extremis at the end of our lives, what do we want done? Treatments that will cure us and have us back to playing tennis? Most of us would say “You betcha!”, but this is not what we are talking about. We are talking about interventions that are done to maintain life, in its literal sense, and are sometimes successful (for a while; no one lives forever) ranging from the seemingly benign administration of nutrition in an atypical way (fluid through a vein, or liquid through a tube in the nose into the stomach or directly into the stomach), to maintaining breathing on a ventilator when there is no hope of ever being able to come off of it, to having electroshocks and chest compressions applied when your heart stops. Contrary to the portrayal on television shows, very few such cardiac resuscitations are done on relatively healthy, relatively young people who go on to survive to live normal lives. The vast, vast majority are done on terminally ill people, most do not survive the intervention, very few survive in a meaningful way – to hospital discharge, and hardly any return to their previous state of pre-hospital function.

Nonetheless, it may be that we choose to have such interventions at the end of our lives. While many of us would choose not to, might choose palliative care (the kind of care given by hospice) where we get everything we can possibly get to keep us comfortable and pain-free but not vain attempts at treatment, many of us might not. We might choose a “Living Will” that delineates what treatments we want and what treatments we don’t want, or we might not, asking for all treatments. But we should think about it, discuss it with our families and the others whose opinions we care about, including our doctors and other health care providers. We are much better off making those kinds of decisions when we are sentient, and able, than when we are unable to speak or are disoriented or in a coma.

And all of us should have a “Durable Power of Attorney for Health Care” (DPOA-HC), even those of us who are young and healthy, because, unfortunately, accidents happen. The DPOA-HC designates a specific person to make healthcare decisions for us when we are unable to do so for ourselves. This is a particularly wise idea for two reasons. One is that, while the law in most states designates an order of relations to make decisions (beginning with the legal spouse and continuing to adult children and then to adult parents) this can be a problem. The spouse may not, him or herself, be able or willing to make decisions. The children may disagree, and there is no law that says, for example, that the oldest has precedence, or that there is a vote. So it is best to designate one person, although we all hope that all of those we care for will agree. Perhaps the person you want to make the decision is a friend, a pastor, or an unmarried life partner.

The second reason is that it requires you to think about what you would want to happen in a situation where you cannot make your own decisions and to share these thoughts and discuss them with your designee (DPOA) and with others who will be involved. The DPOA is supposed to make decisions based on their understanding of what you would want, even if it is different from what they would want, and the way they understand this is for you to discuss it with them. It is also important to note that the DPOA cannot make decisions for you when you are able to make them for yourself, that it (and the Living Will, or any other “advance directives”) can be revoked by you at any time, and that it only covers health care decisions (not, for example, financial decisions).

All hospitals currently are required to ask patients when admitted if they have advance directives. This makes sense; if you’ve made these decisions, and you’re being admitted to a hospital where you hope good things will happen but they might not, you want them to know about them. Sarah Palin, as governor of Alaska, “signed a proclamation making April 16, 2008, Healthcare Decision Day with the goal to have health care professionals and others participate in a statewide effort to provide clear and consistent information about advance directives”. Most insurance companies pay for consultations with physicians about end-of-life care. Although Medicare does not, most primary care physicians do it anyway. This is altogether a good thing.

The current effort to portray advance directives as something they are not, as something bad, as euthanasia, is not only a scurrilous tactic to oppose health reform legislation, it is a terrible, terrible attack on good health care, on something we should all want to do.

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