“The goal is for people to live with confidence, so if you’re ever in a health crisis someone is going to know someone about you and . That is who speaks for you if you can’t speak for yourself, and more simply what are your goals for care.” – Jeff Zucker, CEO and co-founder of MyDirectives on The Hard Question with Blanquita Cullum
The letters to the editor in response to the editorial, “Care at the End of Life,” published by the New York Times on November 24, highlight the increased attention being given to the need to enable individuals to declare end-of-life decisions in advance.
In one letter, Carolyn Conley, a registered nurse with years of experience treating cancer patients, outlined two main advantages for advance directives:
First, it makes it less likely that patients will have unnecessary, unwanted and possibly uncomfortable tests; second, it lifts the burden of medical decision-making from families during a very stressful period, allowing them to spend meaningful time with their loved ones without the additional stress of having to make these difficult choices.
In a second letter, Adina Kay-Gross, who recently lost her father to metastatic lung cancer, wrote of the experience:
Because he was allowed to call the shots, because, when given all the information, he alone chose the circumstances of his death, the end of his life was as loving, as dignified and as human as he was.
We are so grateful that my dad was spared the suffering that no one should have to endure unwillingly.
In today’s world, with a growing number of Americans caring for aging parents, the increased attention to advance care planning is welcome.
But should the focus on advance directives be aimed only at elderly and terminally ill patients?
Interestingly, neither the editorial nor any of the letters to the editor mention the notion of documenting medical wishes earlier in life. After all, no one waits until they’re terminally ill to buy life insurance, or until they’re on their deathbed to think about organ donation.
It’s time to take advance care planning one step further. We should not only be encouraged to decide matters of medical care at the end of our lives, when it may be impossible to communicate our wishes. We should take action to make these tough decisions as we enter adulthood, so that our voices are preserved in all medical situations.
Over the weekend, we were encouraged to open our copy of Sunday’s New York Times to read this in an editorial, “Care at the End of Life,” about end-of-life decisions and planning:
Three years ago, at the height of the debate over health care reform, there was an uproar over a voluntary provision that encouraged doctors to discuss with Medicare patients the kinds of treatments they would want as they neared the end of life. That thoughtful provision was left out of the final bill after right-wing commentators and Republican politicians denounced it falsely as a step toward euthanasia and “death panels.”
Fortunately, advance planning for end-of-life decisions has been going on for years and is continuing to spread despite the demagogy on the issue in 2009. There is good evidence that, done properly, it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.
… No matter what the death-panel fearmongers say, end-of-life conversations and medical orders detailing what care to provide increase the confidence of patients that they will get the care they really want. In some cases, that could well mean the request to be spared costly tests, procedures and heroic measures that provide no real medical benefit.
But while we’re happy to see the New York Times tackling advance care planning, we think advance planning isn’t just for the end of life. It’s also for medical crises – for the 20-year-old on her way back to college after a break who is in a car accident or for the 35-year-old who collapses suddenly while out jogging.
Healthcare emergencies can arise at any time in your life, and some, while not life threatening, may prevent you from expressing your wishes. Less than a third of Americans currently have an advance directive. As a result, millions of Americans arrive at these most vulnerable moments of their lives unable to face them in the manner of their choosing.
Doctors deal with death a lot more often than those of us who don’t practice medicine. For many specialists, it’s part of the job sometimes, and it inevitably colors the way they ultimately deal with their own deaths.
Ken Murray, a clinical assistant professor of family medicine at the University of Southern California, examined this question in a thoughtful piece on Zócalo Public Square. His observations certainly provide food for thought. Murray highlights survey findings from a Johns Hopkins Precursors Study:
According to the study, 65 percent of the doctors (or former medical students) had created an advance directive, i.e. a set of legal documents spelling out in advance what sort of end-of-life care they would like. Only about 20 percent of the public does this. When asked whether they would want cardiopulmonary resuscitation, or CPR, if they were in a chronic coma, about 90 percent of the Johns Hopkins doctors said no. Only about 25 percent of the public gives the same answer.
I discussed the tense, and often tragic, circumstances that surround many of the treatment decisions made in hospitals. Often, I noted, family members or medical staff effectively override the wishes of a dying patient. The studies I’ve found on this suggest that family plays a particularly big role in taking things in an unintended direction,especially when there’s nothing in writing[we added the italics].
Now that’s quite jarring. But also not entirely surprising. From our perspective, the question is, what do you do with this information? And we like Murray’s constructive conclusion on this matter and his advice for patients:
We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer [again, the italics are ours]. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.
Crossposted at MyDirectives.Com