

An Advance Directive for Patients With DementiaApril 30, 2018 |
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An Advance Directive for Patients With DementiaApril 30, 2018 |
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I had hoped that by now most adults in this country would have completed an advance directive for medical care and assigned someone they trusted to represent their wishes if and when they are unable to speak for themselves. Alas, at last count, barely more than one-third have done so, with the rest of Americans leaving it up to the medical profession and ill-prepared family members to decide when and how to provide life-prolonging treatments.
But even the many who, like me, have done due diligence — completed the appropriate forms, selected a health care agent and expressed their wishes to whoever may have to make medical decisions for them — may not realize that the documents typically do not cover a likely scenario for one of the leading causes of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube.
Advanced dementia, including Alzheimer’s disease, is the sixth leading cause of death overall in the United States. It is the fifth leading cause for people over 65, and the third for those over 85. Yet once the disease approaches its terminal stages, patients are unable to communicate their desires for or against life-prolonging therapies, some of which can actually make their last days more painful and hasten their demise.
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Image: By Gelonida – Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=29514151
Many Still Sidestep End-Of-Life Care Planning, Study FindsAugust 1, 2017 |
For the analysis, published in the July issue of Health Affairs, researchers reviewed 150 studies published from 2011 to 2016 that reported on the proportion of adults who completed advance directives, focusing on living wills and health care power-of-attorney documents
For the analysis, published in the July issue of Health Affairs, researchers reviewed 150 studies published from 2011 to 2016 that reported on the proportion of adults who completed advance directives, focusing on living wills and health care power-of-attorney documents
Of nearly 800,000 people on whom the studies reported, 36.7 percent completed some kind of advance directive. Of those, 29.3 percent completed living wills, 33.4 percent health care proxies and 32.2 percent were “undefined,” meaning the type of advance directive wasn’t specified or combined the two.
People older than 65 were significantly more likely to complete any type of advance directive than younger ones, 45.6 percent vs. 31.6 percent. But the difference between people who were healthy and those who were sick was much smaller, 32.7 percent compared with 38.2 percent.
The Medicare program began reimbursing physicians in January 2016 for counseling beneficiaries about advance-care planning.
Image: By Jacob Windham from Mobile, USA – Flickr, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=348530
In a perfect world, patients with advance directives would be confident that their doctors and nurses — no matter where they receive care — could know in a split second their end-of-life wishes
In a perfect world, patients with advance directives would be confident that their doctors and nurses — no matter where they receive care — could know in a split second their end-of-life wishes
But this ideal is still in the distance. Patients’ documents often go missing in maze-like files or are rendered unreadable by incompatible software. And this risk continues even as health systems and physician practices adopt new electronic health records. So advocates and policymakers are pushing for a fix.
The problem isn’t new, experts noted. Advance directives were lost during the era of paper records, too. But, so far, digital efforts have fallen short.
“When these systems don’t work — and currently, they don’t work well enough — then that has a huge negative feedback on doctors and patients and families,” said Dr. Lachlan Forrow, director of the ethics and palliative care program at Boston’s Beth Israel Deaconess Medical Center. “Like, why even bother?” Thinking through and writing down end-of-life preferences can be grueling, he added.
By Jacob Windham from Mobile, USA – Flickr, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=348530
When ‘Doing Everything’ Is Way Too MuchFebruary 9, 2015 |
The words had been written by Vincent himself in blue ballpoint, in a hand that was just beginning to show its age — a little wobbly but steady enough and still clear. “To any doctor who will take care of me in the future,” it read, “I want you to do EVERYTHING in your power to keep me alive AS LONG AS YOU POSSIBLY CAN!”
The words had been written by Vincent himself in blue ballpoint, in a hand that was just beginning to show its age — a little wobbly but steady enough and still clear. “To any doctor who will take care of me in the future,” it read, “I want you to do EVERYTHING in your power to keep me alive AS LONG AS YOU POSSIBLY CAN!”
In trying to honor Vincent’s autonomy, we abandoned him in hell. A decade ago, as a doctor in the intensive care unit at the University of Medicine and Dentistry of New Jersey in Newark, I met Vincent — I’m using this name to protect his privacy — on his ninth stay of the year. He was a “frequent flier,” back and forth between the I.C.U. and his nursing home down the street. He would come in dying, we’d plug him into life support, treat his infection, pump up his blood pressure and send him back to the nursing home. But then he’d deflate like an old tire and be rolled back in by paramedics within anywhere from three days to three weeks.
By the time I met him, Vincent was no longer really with us. The only signs of life occurred during dressing changes and bed-turning, when, despite extra pain medication, pain fired up dormant neurons and his blue eyes flared. There was no family, no friend, no person from Vincent’s life to serve as a guide for our treatment goals. There was only his advance medical directive, which he had completed 10 years and a lifetime earlier at the age of 75. And a handwritten note stapled twice to the form.
An advance directive is a legally valid form that allows a person to choose the type of medical care he wishes to receive. It goes into effect when he is no longer able to speak for himself. Nursing homes typically highlight advance directive completion rates as a point of pride, a metric to prove that they are concerned about the patients’ preferences.
Pulling The PlugApril 18, 2012 |
Patient advocate and advance care planning pioneer Myra Christopher shares the background and personal motivation behind a ‘cultural change’ in medicine
Patient advocate and advance care planning pioneer Myra Christopher shares the background and personal motivation behind a ‘cultural change’ in medicine