End-of-Life Choice, Palliative Care and Counseling

Posts TaggedAtul Gawande

Doctors and family members often push for futile, aggressive care

by Erin Marcus, MD
via KevinMD.com

Every once in a while, there’s a magazine piece that so encapsulates the key moral issues — and irrationality — of 21st Century medicine that it warrants designation as mandatory reading for anyone who interacts with patients. Atul Gawande has written some of these; so too has Slate medical columnist, Darshak Sangavi.

The latest entry on the required reading list is Katy Butler’s “My Father’s Broken Heart,” which appeared in The New York Times Magazine on June 20th. Butler, who teaches memoir writing in California, describes the seven-year deterioration of her father Jeffrey, a retired college professor. Jeffrey Butler was active and intellectually engaged well into his 70′s. At 79, he suffered a stroke that left him with significant problems speaking, walking and putting on his clothes. Despite his initial determination to overcome the stroke’s aftereffects, he deteriorated, telling his wife, “I don’t know who I am anymore.”

A year after the stroke, Jeffrey Butler developed a painful intestinal hernia that needed to be repaired. As is routine for complicated elderly patients, the surgeon requested a preoperative cardiology clearance. The cardiologist, in turn, refused to deem him stable for surgery unless he received a pacemaker for his slow heart rhythm (which Butler doesn’t describe in detail). This wasn’t the first time the specialist had advised him to get a pacemaker; a year earlier, just prior to the stroke, it had also been recommended, and Jeffrey Butler had refused. But this time, his wife and healthcare proxy, Valerie — who was overwhelmed, fatigued and, most likely, reluctant to impede an urgent procedure that would fix her husband’s pain, consented. The couple’s primary doctor, who knew them well and who had told them a year earlier that he considered a pacemaker “overtreatment,” found out about the decision after the fact, by fax.

The pacemaker insertion and subsequent hernia repair, were, in the short-term, seemingly successful. Otherwise, though, Jeffrey Butler continued to worsen, suffering additional strokes and becoming blind, incontinent, and senile, and developing the personality changes often seen with dementia. Katy Butler painstakingly describes the devastating effect of all this on her mother, who described her life as “in ruins.” Four years after the pacemaker placement, she asked his cardiologist to turn off the device, but he refused, describing it, according to Katy Butler, as something akin to murder. And so, the family’s hellacious existence continued, until Jeffrey Butler died uncomfortably of pneumonia in the hospice wing of a local hospital, eight years after his initial stroke. The cause of his expiration was respiratory failure; his pacemaker continued to work perfectly.

Valerie Butler died a year later, after resolutely refusing open-heart surgery for two leaky valves. At the beginning of the story, she was a vigorous woman who practiced yoga and calligraphy. By the end, she was mentally sharp but physically frail, and had lost her confidence in doctors as healers looking out for their patients’ best interests, instead viewing them, in the words of Katy Butler, as “skilled technicians with their own agendas.”

As a cog in the US medical machine, it’s not difficult for me to envision how all this happened. Taken individually, the initial decisions in Jeffrey Butler’s care don’t seem particularly unreasonable. While Butler doesn’t provide all the details, a painful intestinal hernia is something that needs surgical repair, and, if the bowel becomes trapped and deprived of oxygen, life-threatening. It’s totally understandable that the surgeon would want an elderly patient with known vascular disease to be cleared by a cardiologist before undergoing anesthesia, which can directly affect the heart and blood vessels. Implanting a permanent pacemaker is more debatable, but not totally out of line; even though Jeffrey Butler was significantly impaired after his first stroke, he was still, at that point, able to communicate, walk alone, and participate in water aerobics. It’s therefore not difficult to comprehend the rationale of the consulting cardiologist — who most likely wasn’t familiar with the family’s private pain — in recommending the device.

Unlike many people in this situation, the Butlers were lucky to have a thoughtful primary care doctor, with whom they shared a close personal bond. But as is true too often, the subspecialists left him out of the discussion. Even if they had included him, Katy Butler points out, he would have been “effectively penalized” financially for taking the time to have a lengthy discussion with her parents and coordinate a plan with the surgeon and heart specialist. (Butler also notes that the original health reform bill in the US House did include reasonable payment for such discussions, which were depicted as “death panels” by the bill’s opponents — thank you, Sarah Palin).

Butler points the finger for our fix-it-fast, think-about-the-big-picture-later medical system at the medical-device and specialty lobbies in Washington and the distorted payment system their efforts have spawned, in which doctors get rewarded to do procedures instead of taking the time to communicate effectively with their patients. Despite the reimbursement system’s role in creating this irrational monster, our country’s technology-happy mentality is also to blame. Intertwined with all this is the discomfort many of us have with the end of life, in which death is viewed as a failure. While medical schools have added curricula on this topic, it’s not exactly the focus of their overall educational program.

Doctors aren’t the only ones uncomfortable with death. It’s not uncommon for family members of critically ill patients to push for futile, aggressive care, even if the medical team feels the treatment is simply prolonging the patient’s demise. One friend of mine quit critical care medicine after being forced by family members to keep their relative with end-stage Alzheimer’s on a ventilator. “That’s not why I went into medicine,” she said.

Recently, I faced a situation similar to that of Jeffrey Butler’s doctors. My residents admitted a patient with dementia who briefly passed out and was found to have an intermittent heart block. As is common with many of our patients, he had no primary care physician. Of course, our team called the heart rhythm specialists right away, and they concluded that he was, indeed, a candidate for a pacemaker. But when they called the patient’s brother to get consent, he refused. At the time, I didn’t think much of it; we documented the refusal in the chart, adjusted the patient’s medications, and sent him back to his assisted living facility with a follow-up appointment. After reading Butler’s article, I can’t think of a better solution.

Erin Marcus is an internal medicine physician and writes at New America Media. This article originally appeared in The Huffington Post.

“Letting Go” by Atul Gawande Presents Doctors’ Perspective — But That’s Not Enough.

“Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that terminal patients have left.”

So begins Atul Gawande’s widely read and influential article in The New Yorker magazine last August. That opening encapsulates Gawande’s clear articulation of barriers to good end-of-life care. It also reveals his underlying bias. Medicine’s bias toward aggressive, mostly futile treatment is perhaps the greatest obstacle between patients and a peaceful, gentle death.

Gawande writes that modern medicine is “bad at knowing when,” to focus on a patient’s quality of life. That implies the solution is for doctors to improve their ability to know when to change focus. Maybe so — but that would not get to the heart of the matter.

At Compassion & Choices we represent patients. Our view is only they — not doctors — have authority to decide when it’s appropriate to focus treatment on quality of life. Patients usually defer this decision to their doctors because they lack sufficient information to make a judgment. They don’t know the likelihood a treatment will extend life, or for how long, or at what cost in adverse side effects. But it is the patient’s decision, make no mistake.

Thank you, Dr. Gawande, for highlighting the need for better communication and frank disclosure at the end of life. Apart from ignoring patient self-determination, Dr. Gawande made some excellent points. Here’s how they compare to our own experience and philosophy.

Balance. Dr. Gawande makes an excellent argument for shifting attention from concerns about the cost of end-of-life treatments to a focus on what is best for patients.

“Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars.”

We agree. The tragedy is patients suffer needlessly at the end of life. The extraordinary cost just adds insult to injury.

Informed Consent. Here’s where Dr. Gawande betrays a reluctance to give patients comprehensive, candid information.

“There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless to confront Sara and Rich with this now.”

While it may feel harsh to a physician, it is hardly pointless. Information empowers patients to make valid decisions and give informed consent. When doctors are reluctant to discuss bad news, they may project that feeling onto their patients, who, research shows, generally are willing and eager to understand their options and prognosis. In a study of 2,331 patients with cancer, 87% report they want as much information as possible regarding their diagnosis and prognosis, even if it isn’t good.

Autonomy. The article suggests more than once that patients and their families seek aggressive treatment their doctors would not recommend. That may happen occasionally, but more often doctors are reluctant to both recognize and divulge just how futile further disease-specific treatment may be. Dr. Gawande defends doctors who withhold information, and suggests they can assess patient and family decisions without giving and receiving explicit information and consent.

“Perhaps Marcoux could have discussed what [Sara] most wanted as death neared and how best to achieve those wishes. But the signal he got from Sara and her family was that they wished to talk only about the next treatment options. They did not want to talk about dying. (Emphasis ours)”

Later, he writes, “Marcoux took the measure of the room.”

Dr. Gawande and the oncologist he writes of, like many well-intentioned doctors, may suppose they know what their patients want without an explicit discussion or clear expression of choices. A recent study shows doctors usually don’t understand their patients’ beliefs about the cause, meaning, treatment, and control of their condition. Doctors presume their patients’ beliefs align with their own. As a result they make erroneous assumptions.

Conversation. Dr. Gawande relates how he learned it’s important for doctors and patients to have meaningful discussions about end-of-life choices. His surprise at discovering this is a pleasant affirmation to those of us who have observed the phenomena and promoted these conversations for years. Discussing a pilot program where palliative care experts had regular conversations with terminally ill patients, he writes,

“they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking. The explanation strains credibility, but evidence for it has grown in recent years.”

Focus and Self-determination. Dr. Gawande writes with great understanding of how important and difficult doctors find conversations with dying patients about end-of-life preferences. He writes supportively of the legislation Compassion & Choices championed to reimburse doctors for these conversations. He quotes palliative care specialist Dr. Susan Block in highlighting the need for better provider education.

“’You have to understand,’ Block told me. ‘A family meeting is a procedure, and it requires no less skill than performing an operation.’”

In the paragraphs that follow, the experiences of Dr. Block and an unnamed oncologist paint a picture of how frank dialogue with a patient and their family, pushing past the discomfort the doctor may feel, can shift the focus to patients and empower them to make a difficult decision. The oncologist, he writes,

“was frank. She told [the patient] that in her entire career she had never seen third-line chemotherapy produce a significant response in his type of brain tumor…. And, although she was willing to proceed with chemotherapy, she told him how much strength and time the treatment would take away from him and his family. He did not shut down or rebel. His questions went on for an hour. He asked about this therapy and that therapy. And then, gradually, he began to ask about what would happen as the tumor got bigger, the symptoms he’d have, the ways they could try to control them, how the end might come.”

Compassion & Choices organizes its vision of optimal decision-making in Seven Principles for Patient-Centered End-of-Life Care: focus, self-determination, autonomy, personal beliefs, informed consent, balance and notice. Dr. Gawande’s best points are included, as well as tenets we hope he might adopt. We hope someday all practitioners adopt these principles as a guide, break old patterns of “everything possible” and fully inform and authorize patients to make the most important decisions of their lives.

Atul Gawande: How to Talk End-of-Life Care with a Dying Patient

Compassion & Choices has long been a leader in the effort to empower patients to make their own end-of-life decisions.  Five states now have expanded end-of-life choice, including New York and California.

In July, Dr. Atul Gawande published a much talked about article on aggressive medical interventions for dying patients–and how patients and doctors must work together to decide priorities for how and when to treat illnesses for those facing the end of life.

In October, Dr. Gawande discussed the four important points for doctors to discuss with terminally ill patients about their end-of-life care. Instead of pressing patients to make hard decisions, Gawande emphasizes the importance of asking questions about their hopes and fears.