“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.