If advance directives take guesswork out of care, why don't more people use them?
Terry Pratchett, famous for his Discworld series died last week at the age of 66. Pratchett, one of England’s most-loved authors was diagnosed in 2007 with early onset Alzheimer’s disease, the “embuggerance,” as he called it. He became an outspoken advocate for assisted dying. He once wrote, “I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the “Brompton cocktail” some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with Death.” He goes on to say that, the Victorians knew how to die. Death took place in your own bed. Nowadays, it takes place in hospitals and hospice. In a 2011 interview with Steve Inskeep he told NPR, “I believe everyone should have a good death. … The ideal death, I think, is what was the ideal Victorian death: You know, your grandchildren around you, a bit of sobbing — because, after all, tears are appropriate on a death bed — and you say goodbye to your loved ones.” Unlike many Americans, Pratchett spent considerable time and energy learning about and making decisions about how his death should come about and then informing all and sundry what that meant for him.
What most of us have in common with Pratchett is a desire for a death with dignity in our own homes in our own beds. Unlike Pratchett, who died peacefully in his own bed, most of us don’t accomplish that goal. According to the American Psychological Association, 63 percent of Americans die in hospitals and another 17 percent die in an institutional setting such as a long-term care facility. Most people never take advantage of the two ways (hospice and palliative) available to make their death “a beautiful death.” In 1997, the Institute of Medicine released a report detailing the suffering many Americans experience at the end of life and detailed recommendations to improve care. Despite more than a decade passing since the report came out the number of Americans experiencing pain in the last year of their life increased by nearly 12 percent according to results from a Quality of Dying and Death questionnaire. (Ratings were best for those who did manage to die at home.)
In The Conversation, the book’s author, Dr. Angelo E. Volandes says that while Americans have some of the best health care that money can buy, we experience some of the worst deaths in the developed world. He blames our unwillingness to articulate what we want at the end of life and the fact that American doctors continue to try to fix specific health problems without looking at how that treatment affects the whole patient.
Advanced directives, sometimes called Living Wills, POLST Forms or Durable Powers of Attorney for Health are not new. Most people are aware of them if for no reason than the news continues to report on and on about the Terri Schiavo’s and Karen Ann Quinlan’s of the world whenever someone’s family insists on continued treatment in the hopes they’ll come out of a vegetative state. Despite knowing the intimate details of these poor families who ended up in court, most of us do not do anything to prevent our own families from experiencing the same kind of crisis. A 2013 study found that only about a third of Americans have bothered to fill out an advanced directive. While those numbers are closer to 70 percent for Americans age 60 and over, even those who have filled out paperwork directing their end-of-life plans often do not bother talking to their doctors about it or having them included in their health record. Without at least those two crucial steps, those documents are just a piece of paper stuffed into a drawer somewhere and forgotten.
In addition, medical personnel need to talk to patients about their final wishes because many people do not understand what they are choosing. One study of nearly 5,000 people found that advanced directives even when placed in the medical records of seriously ill patients often did not guide medical decision making beyond naming a healthcare proxy or documenting general preference. An earlier article in the AMA Journal of Ethics throws some light on why something seemingly so straight forward can be so second-guessed by both family and medical personnel. Often, it’s the family who ignores the advanced directive, likely from an inability to let go of a parent since the parent doesn’t appear to be unhappy in his or her new circumstance. And finally, the ability to keep a person alive has far outstripped our ability to determine how well they will recover. Families aren’t deciding living or dying so much as they are balancing when quality of life falls below the threshold enough that death is preferable.
A conversation with medical staff can clarify the patient’s goals, wishes and preference while presenting realistic outcomes for treatment of a difficult diagnosis. One recent study looked at how a video presentation of what CPR and intubation really looked like altered patient’s decisions. Only half of the patients who initially said they wanted CPR or intubation if it was necessary to keep them alive chose to stay with those decisions after seeing the video. What’s more, the videos took only three minutes and were not particularly graphic. Doctors believe that the portrayal of those life saving measures in movies and television color patient’s perspectives about future outcomes and benefits. Here is more on that study.
Another study provided 200 advanced-stage cancer patients, with less than two years to live, an online tool and a state-approved advanced directive. The site offered patients information about possible medical conditions and treatments options and helped them to rethink their goals and then communicate those decisions including the decision of who would make decisions on their behalf. Contrary to physician’s concern, study participants found that the information decreased their anxiety levels and increased the patients’ knowledge on advanced care planning.
None of your hard work in putting together documents for your health care wishes will mean a thing if you tuck those documents away somewhere and no one knows where to find them. Don’t rely completely upon your Living Will to communicate your wishes. Appoint a healthcare agent and then make sure that your proxy understands your wishes and knows where to find the documents outlining those wishes but more importantly, make sure that proxy is willing to do what is right for you. Recognize that Living Wills are by nature vague. You can get around that to some degree by having discussions with your proxy about what is important to you and what limitations you would find acceptable. That’s one of the reasons family members and the family meeting are such an integral part of LifePlanning. Finally, recognize that like most legal documents, Living Wills shouldn’t be completed and then ignored. Legal documents are intended to be your current voice and express your wishes now for when you pass. Some people find that what they couldn’t accept at one time is perfectly acceptable 10, 20 or 30 years later. Make sure that your documents reflect that change.
Please read my white paper on talking about death and dying.