What to Expect When You Are Expecting to Die
by Krishna Andavolu
JANUARY 12, 2012 TAGS:
The closest I have ever come to making an advance directive was when I watched the Seinfeld episode, "The Comeback," back in the 90s. You know the one: Kramer rents a movie about a woman in a coma called, "The Other Side of Darkness," and is inspired to write a living will in case a similar fate befalls him.
There's a tepid punchline to Cosmo's sudden interest in planning for end-of-life care. He hurries to amend his living will ("don't pull the plug!") after watching the end of the movie when the fictitious protagonist emerges from her coma. At death's door, one's fate can go either way.
The term living will, like the show Seinfeld, is a bit out-of-date. These days, medical professionals and lawyers prefer calling these legal documents Advance Directives. An AD stipulates the type of medical care a person wants to receive in extreme, end-of-life circumstances. Based on a set of hypothetical situations, how should doctors proceed? Prolong life at the risk of terrible pain or offer palliative and pain reducing therapy when death is imminent?
As such, an AD is a mortal accounting, a set of instructions derived from facing the fact that you will die. Not to mention that your death might be painful and frightening for both you and your family. So it's not too surprising that not many Americans have one.
But that needs to change, according to Dr. Dan Morhaim, a Baltimore-based emergency medicine physician, Maryland state legislator and faculty member at Johns Hopkins' Bloomberg School of Public Health. The combination of America's aging population, medical advances that can prolong life like never before and data about the quality of care given patients with ADs suggest that it's time for ADs to become integral documents to our lives like, Dr. Morhaim suggests, drivers licenses.
Dr. Morhaim's new book, The Better End: Surviving (and Dying) on Your Own Terms in Today's Modern Medical World (recently released by Johns Hopkins University Press), offers stories of families who have benefited from knowing what to expect when a loved one's health turns for the worse. As a physician, a legislator and an academic, Dr. Morhaim regards ADs as instruments of profound change to the way Americans die, because they force families to confront the inevitable.
The family waiting room, so often a scene of distraught and sometimes argumentative families, becomes a more peaceful place, according to Dr. Morhaim. Intractable family conflict isn't allowed to overshadow valuing the time a loved one has left.
The book is less of a how-to than an oral history of the ways ADs are used by families and doctors. He's changed the names of patients and made amalgamations of medical problems and family issues, but the truths of real stories form a body of material evidence demonstrating the need for conversations about death between family members.
From a numbers perspective, Dr. Morhaim has plenty of data to support that contention as well. In 2010, he worked on the first comprehensive public health study of Marylanders and Advance Directives. The results weren't exactly surprising. But they were instructive. 62 percent of respondents didn't think that ADs are important enough to compose. As such, both the medical profession and policy-makers need to do more to get people to think about their end-of-life decisions beforehand.
For instance, most of the 34 percent of Marylanders surveyed who had ADs received information about end-of-life decisions from their lawyers. Of the 62 percent of respondents who did not have ADs, 40 percent would want to receive information about ADs from their doctors.
Doctor or lawyer? This incongruity reflects another fact Dr. Morhaim points out. The whiter and richer you are, the more likely you'll have an AD. That isn't to say that rich people or white people are more comfortable with death. But simply, if you have money to protect, planning your estate forces you to think about the end, which in turn forces you to think about your body's end. End-of-life care can be viewed as a legal issue. But tightening the slack of patient care is first and foremost a health services issue that shouldn't be reserved for the rich only.
So there's a legislative imperative too. As a member of the Maryland House of Delegates, Dr. Morhaim has introduced a number of bills to streamline the process of making an AD. In 2011, a bill he sponsored, The Health Care Decisions Act - "Medical Orders for Life-Sustaining Treatment" Form, was passed unanimously. The law makes Maryland one of the few states in the union to offer citizens a simple advance directive form.
Finally, promoting advance directives is about breaking the last taboo. Decades ago, Dr. Morhaim explains, talking publicly about diseases like breast cancer was taboo too. Until the likes of Betty Ford and other women came forth and talked about openly.
Can death, or really the process of dying, be given the same consideration in the light of day? Dr. Morhaim thinks it can. And maybe I'll take the time to compose my end-of-life medical plan, even though I hope the day I'll need is far, far away.
Krishna Andavolu is Managing Editor of Obit-Mag.com
There's a tepid punchline to Cosmo's sudden interest in planning for end-of-life care. He hurries to amend his living will ("don't pull the plug!") after watching the end of the movie when the fictitious protagonist emerges from her coma. At death's door, one's fate can go either way.The term living will, like the show Seinfeld, is a bit out-of-date. These days, medical professionals and lawyers prefer calling these legal documents Advance Directives. An AD stipulates the type of medical care a person wants to receive in extreme, end-of-life circumstances. Based on a set of hypothetical situations, how should doctors proceed? Prolong life at the risk of terrible pain or offer palliative and pain reducing therapy when death is imminent?
As such, an AD is a mortal accounting, a set of instructions derived from facing the fact that you will die. Not to mention that your death might be painful and frightening for both you and your family. So it's not too surprising that not many Americans have one.
But that needs to change, according to Dr. Dan Morhaim, a Baltimore-based emergency medicine physician, Maryland state legislator and faculty member at Johns Hopkins' Bloomberg School of Public Health. The combination of America's aging population, medical advances that can prolong life like never before and data about the quality of care given patients with ADs suggest that it's time for ADs to become integral documents to our lives like, Dr. Morhaim suggests, drivers licenses.
Dr. Morhaim's new book, The Better End: Surviving (and Dying) on Your Own Terms in Today's Modern Medical World (recently released by Johns Hopkins University Press), offers stories of families who have benefited from knowing what to expect when a loved one's health turns for the worse. As a physician, a legislator and an academic, Dr. Morhaim regards ADs as instruments of profound change to the way Americans die, because they force families to confront the inevitable.
The family waiting room, so often a scene of distraught and sometimes argumentative families, becomes a more peaceful place, according to Dr. Morhaim. Intractable family conflict isn't allowed to overshadow valuing the time a loved one has left.
The book is less of a how-to than an oral history of the ways ADs are used by families and doctors. He's changed the names of patients and made amalgamations of medical problems and family issues, but the truths of real stories form a body of material evidence demonstrating the need for conversations about death between family members.From a numbers perspective, Dr. Morhaim has plenty of data to support that contention as well. In 2010, he worked on the first comprehensive public health study of Marylanders and Advance Directives. The results weren't exactly surprising. But they were instructive. 62 percent of respondents didn't think that ADs are important enough to compose. As such, both the medical profession and policy-makers need to do more to get people to think about their end-of-life decisions beforehand.
For instance, most of the 34 percent of Marylanders surveyed who had ADs received information about end-of-life decisions from their lawyers. Of the 62 percent of respondents who did not have ADs, 40 percent would want to receive information about ADs from their doctors.
Doctor or lawyer? This incongruity reflects another fact Dr. Morhaim points out. The whiter and richer you are, the more likely you'll have an AD. That isn't to say that rich people or white people are more comfortable with death. But simply, if you have money to protect, planning your estate forces you to think about the end, which in turn forces you to think about your body's end. End-of-life care can be viewed as a legal issue. But tightening the slack of patient care is first and foremost a health services issue that shouldn't be reserved for the rich only.
So there's a legislative imperative too. As a member of the Maryland House of Delegates, Dr. Morhaim has introduced a number of bills to streamline the process of making an AD. In 2011, a bill he sponsored, The Health Care Decisions Act - "Medical Orders for Life-Sustaining Treatment" Form, was passed unanimously. The law makes Maryland one of the few states in the union to offer citizens a simple advance directive form.
Finally, promoting advance directives is about breaking the last taboo. Decades ago, Dr. Morhaim explains, talking publicly about diseases like breast cancer was taboo too. Until the likes of Betty Ford and other women came forth and talked about openly.
Can death, or really the process of dying, be given the same consideration in the light of day? Dr. Morhaim thinks it can. And maybe I'll take the time to compose my end-of-life medical plan, even though I hope the day I'll need is far, far away.
Krishna Andavolu is Managing Editor of Obit-Mag.com
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