When I attended the Association of Health Care Journalists (AHCJ) conference in Boston recently, discussion swirled on the topics of unsustainable costs of care, doctors’ incentives under traditional payment models to order more tests and treatments, and the struggles of patients’ family members to avoid unwanted care at the end of life. That Sunday night, I was back at my day job (so to speak) in the Cardiac Intensive Care Unit (CCU), a place synonymous with the utmost care and where I first grew accustomed to difficult conversations about such topics.
I was chatting with some of the nurses during a lull in our work and the conversation turned to a patient several of us had cared for in the past. He was an 80-something, emaciated man with an irreversible lung condition who seemed on the verge of passing on for much of his hospital course. The medical team had spent hours talking to him and his family about how aggressive to be with his care. Consistently, he and his family that he should have it all – even when that meant a tracheostomy tube through a surgical hole in his neck to help him breathe, accompanied (necessarily) by a feeding tube that would directly enter his stomach. One morning a few days after the procedures, the patient awoke and began cursing in a loud whisper at anyone within earshot – why was this object in his throat, and this other one in his belly? Who would do this to him?
Though his doctors and nurses had been disappointed with the decisions, the patient and his family had made them through a standard process of informed consent. So what had gone wrong? Had this man truly understood what it would mean to live this way?
A nurse told me about another patient whose heart was failing and had eagerly come to Boston to be listed for transplant. She was told she’d need to have a wire placed in her neck to measure the pressures in her heart as she awaited a donor organ. But what she hadn’t realized, and quickly came to bemoan, was that she’d be tethered by that wire to a pole and would have to live within a four-foot radius for the weeks or months it might take to find a match. Had she known, she may not have signed up.
In recommending one course of action or another, doctors are saddled with our own biases, which tend to underestimate the quality of life of patients with chronic illnesses or disabilities. At the same time, we often err on the side of offering too many options, even when we worry that some will have poor outcomes (though here we walk a fine medicolegal line). We have a hard time helping patients understand the true experience of living or dying with these decisions: time is short, there is genuine uncertainty in how they might play out, we have few data to guide us (quality of life is an all too infrequently measured outcome in clinical trials), and we are often removed from those experiences by virtue of our limited time with patients and our relative good health.
That’s where decision aids come in – particularly the wonderful video aids that my MGH colleague Angelo Volandes has created to visually inform patients of their options. He has found in randomized controlled trials that the videos help patients make decisions that are in line with their values and, as a side benefit, decrease the use of invasive procedures and therefore cost.
As a recent article in JAMA Surgery argued, doctors must be trained, publicly rated, and reimbursed for our end of life discussions. I’m increasingly convinced that we also need to enlist the help of nurses, with their front line view of patients’ experiences, to realistically convey the repercussions of high impact medical decisions. And we need more of these stories told by journalists in vivid detail and with the utmost clinical accuracy.
In his heartfelt reflection on his mother’s final days of life, AHCJ board president Charles Ornstein wrote about his family’s difficult decision to withdraw care:
“We knew her end-of-life wishes: She had told my dad that she didn’t want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? In all my reporting, I’d never realized how little the costs to the broader health care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn’t get a chance to make it twice.”
We cannot truly share end of life decisions with patients and families unless we guide them through their consequences in a meaningful way. It’s even harder than it seems and it will take all hands on deck.
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I believe that one of the greatest problems with end-of-life and/or advanced care decisions is that they’re left too late: in a crisis situation, under time pressures, and highly emotional circumstances.
I believe that these decisions should be made in “normal” times, almost as a form of New Year’s resolution: if I were to be in x situation, what would I want my health care response to be? This should be a discussion between the individual and the members of his/her support network, and between the individual and her/his physician. It should be followed up in writing.
My family has a wide and long history of heart disease and stroke; I am obese, with diabetes, high blood pressure, and high cholesterol, all managed by medication. For decades, I have been clear with my family members, and my physicians, about my wishes should I have a stroke or heart attack. If I am unable to interact with my environment, with the people in my environment, if I can no longer read at the level I do now, converse at that level, observe and enjoy nature as I do–all the things that to me constitute quality of life, and there is no reasonable hope that I can return to those levels of quality of life within a reasonable (weeks to months) period of time, then not only do I not want any “heroic measures” taken, I want an active intervention to ease me out of life.
I revisit this decision periodically, to see if it has changed. To me, this is simply responsible behaviour, a partner decision to making a will and deciding how I want my estate concluded.
I may change my mind when/if the crisis occurs, but at least I will have thought through the factors and my criteria for them over a long period of time, and discussed them with important people in my life.
I have discussed this with every GP I’ve had in the last 40 years. I have always been the one to bring it up, none of them has ever initiated it. Why is it not part of an initial intake questionnaire, along with medical history, etc.? It needn’t be decided at that point, but at least the subject has been opened.
I understand Ornstein’s family’s difficulties in coming to a decision regarding his mother’s care: I’ve gone through this with my mother and my younger brother. I will never know to what extent, if any, my discussions with their health-care providers at the end of their lives may have affected withdrawal of care, but although the decisions were painful and filled with sadness, I have no regret. I know the wishes I expressed were consistent with their wishes, and appropriate to the situations–because we had talked about this well beforehand.
In sum, clearly I am strongly advocating that end-of-life decisions ought *not* to be made at the end of life, or at least not only then.
Physicians are damned if they do and damned if they don’t. Many of our choices are from several bad options.
When my mother was dying my brother and I had to make repeated choices between more treatments or giving up. Whenever there was even a tiny chance for cure we were given the options and vague odds but no clear direction as to what to do. I think the doctors were afraid to guide us.
Even though my father refused to make any decisions and said repeatedly, “Ask my sons,” in the end when my mother died, our father blamed my brother and I for making our mother suffer.
As I was a physician at the hospital where my mother was being treated, I spoke with the hospitalist after my mother was sent to palliative care. She said that she had discussed our situation with the young specialist who treated my mother and they agreed that they would have done exactly what my brother and I did. I told her that the only complaint I had about my mother’s care was that the doctors hadn’t told us that as we were making the decisions. It would have eased a great burden on our family during that terrible time.
It’s interesting you say this, and its something that Atul Gawande also said in his book “Complications”.
Through all of our enthusiasm for “patient-centered care”, we had forgotten that sometimes, the patients want us to make the decision. It’s a huge burden for a patient, or a family member, to have to live with the consequences of a decision that they do not fully comprehend should things turn out dire.
Maybe we should be asking our patients more often if they want us to make the final call.
I agree Ishani with your comments. I am interested in the science of achieving informed consent. Can you please provide a reference to the Volandes study?
Hey Tom, the studies are all linked at the bottom of the page Ishani hyperlinked: http://www.acpdecisions.org/evidence-publications/
Tom
Glad to hear your interest – since findings indicated ‘informed’ is open to interpretation In my previous role as VP programming for a direct to patient tv network based in hospital, several impact studies were conducted. For example, results pre and post watching Advance Directives video show significant improvement in understanding the importance of having an AD (perhaps not surprisingly, many patients knew the term Living Will better than AD) and the consents required. However, overwhelmingly, patients also indicated they need help completing.
Results of this survey have been presented at the Society of Teachers of Family Medicine Conference, and are the basis of follow-on study at Lehigh Valley (PA)
The website bestendings.com was developed to help meet patients’identified need: help in completing their AD/Living Will/ACP towards meaningful ‘informed’ consent.
Kathy