BioethicsWalk addresses
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Responses to Ernie, Fred and Slow Med (see article below)
"Slow Med" is reasonable approach, but to effect it adequately, it seems that this decision ought to be enacted in tandem with significant others as well as with one's caregiver(s). Failure to do so can lead to treatment(s) and intervention(s) that are undesirable and which, if instituted, create clinical and ethical problems for those who bear the responsibility for the care of others. The old trigger film "Code Gray" clearly identify the ethical dilemmas and problems that could arise for many when those trained to act and save life emergently assume modulating roles for how much care they ought to provide. Advance directives are helpful but not foolproof antidotes to this challenge. Making decisions as "slow med" are really are not "ethical dilemmas" at all. They are structural and procedural decisions that can be negotiated openly and congruently as care goals move from cure or restoration to comfort.
Dr. Terry Bard, Rabbi
Clinical Psychologist and Ethicist
Cambridge, MA
I work in a Geriatric Psychiatry unit at a Mental Health Centre in Ontario, Canada. We have many patients who have dementia and associated behaviours. I can’t count the number of times that families have said that a loved one would not want to continue this way with severe dementia and yet sometimes they still request a level of care that will prolong life in the case of cardiac arrest or other emergent medical issue. These articles will help our team to discuss the realities of end of life decisions with families.
Ruth Cooper, BSW (hons), RSW
Social Worker, Geriatric Services Program
Mental Health Centre
Penetanguishene, ON
Ernie, Fred and Slow Med
(This month’s column isn’t obviously focused on an ethical dilemma affecting chaplains, Rather, it’s the result of listening to family conversations about end of life care at the same time as I’m drafting ethics guidelines for clinicians, including chaplains, who care for persons near the end of life. I’m hoping that listening to these conversations will help me keep the guidelines “street-ready,” as they said in seminary (or at least in my seminary).
My father-in-law, Fred, was a milkman, like his father and grandfather. Milkmen know a lot about driving trucks, and my husband has shared several of his dad’s driving tips with me: “Always thinking.” “Always know what’s coming up behind you.”
Fred is now in his mid-eighties, very active, recently widowed for the second time. His first wife died of heart disease, the second after many years of emphysema. As a caregiver, he’s familiar with the revolving door of chronic progressive disease, from the ER to the ICU and back home, until the next emergency. And lately he’s rethought his rearview-mirror maxim. When it comes to his own dying, he says, “I don’t want to see it coming.” So he’s begun to firmly reject the tests that are routinely offered to older patients during office visits. If there is something there, something that might start up that revolving door, he doesn’t want to know about it.
My own father, Ernie, is in his late seventies, also healthy and active. He has also begun to turn down certain invasive tests if the rationale for doing them seems unclear: “Last week, I said no to a brain scan!” But he keeps up with his cardiologist. A routine test seven years ago picked up coronary artery disease, and a sextuple bypass saved his life.
My father – and mother – are fans of “Slow Medicine,” the evidence-based approach to geriatric health care, developed at Dartmouth-Hitchcock Medical Center, that distinguishes between treatable illness and the diseases of aging, and seeks to avoid “death by intensive care” – lots of hospitalizations, lots of procedures – when a less-aggressive approach might result in the same outcome. Slow Med is associated with the continuing care retirement community Kendal at Hanover, near Dartmouth. My parents would move there in a flash – but CCRCs can be expensive, with upfront fees as high as $400,000. (Also, it’s cold in northern New England.) But there’s a lot of discussion about Slow Med at their church, which is involved in two local shared-housing projects for senior citizens who want to age in place, in the company of others. And there’s a lot of discussion with my sister and me: by now, we’re pretty clear on what our parents do and don’t want. (My father’s mother is 100 and healthy in assisted living, so we take a long view of “aging.”)
So, here are two visions, from reasonably healthy, definitely aging individuals, about the “good death.” Fred’s vision is “WHAMMO” – an instantly fatal heart attack. Having avoided that heart attack, Ernie’s vision is “avoid anything that might put you in the hospital without a really good reason.” With respect to Fred, as an ethicist (and daughter in law living 800 miles away) I worry mostly about what could happen if someone calls 911 without his knowledge or against his wishes: even the best-laid advance care plans may be disregarded in the field once “lifesaving” CPR – which is rarely effective in the elderly – goes into effect. I also worry, of course, about distinguishing between aggressive treatment and treatment that can resolve or stabilize problems. If you don’t live at Kendal, where do you find the physician who knows the evidence and can help you make well-informed decisions? With respect to Ernie, as an ethicist (and daughter living 50 miles away), I worry mostly about my role in all this. My 70-something parents are still adult caregivers – but, according to the AARP, the average family caregiver is a 46 year old female who is married and employed. That sounds awfully familiar.
This is an interactive column, and I would love to hear from chaplains who work in nursing homes, assisted living facilities, and CCRCs: how does advance care planning work in your organization? I would also love to hear from chaplains who are familiar with Kendal communities and with Slow Medicine in practice.
For more on Slow Medicine:
Jane Gross, “For the Elderly, Being Heard at Life’s End” (New York Times, May 5, 2008)
http://www.nytimes.com/2008/05/05/health/05slow.html?_r=1&oref=slogin#
Dennis McCullough, My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved One, New York: HarperCollins, 2008.
Nancy Berlinger is Deputy Director and Research Associate at The Hastings Center. Her research interests focus on clinical ethics and include end of life care; ethics in health care chaplaincy; conscientious objection and moral distress in health care; and patient safety and the resolution of medical harm. Her broader interests include bioethics issues in cancer care, narrative ethics, and medical humanities.
As Deputy Director, she manages the Center’s organizational capacity-building initiative, Bioethics and the Public Interest, which has received major support from the Ford Foundation.
Berlinger is the author of After Harm: Medical Error and the Ethics of Forgiveness
(Johns Hopkins, 2005), which will be released in paperback in fall 2007. She serves on the ethics research group of the Joint Commission, the ethics faculty of the American Society of Healthcare Risk Managers (ASHRM), the bioethics committees at Montefiore Medical Center, Bronx, New York and at Richmond of New York, and the editorial board of Medical Ethics Advisor
. She is a frequent presenter at grand rounds and other ethics education programs for health care professionals. She volunteers on the Chaplaincy Service at Memorial Sloan-Kettering Cancer Center in New York City.
She is a graduate of Smith College and holds the Ph.D. in English Literature from the University of Glasgow and the M.Div. in Christian Ethics from Union Theological Seminary.
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