In 1975, Shirley Dinnerstein, a 64-year-old Massachusetts woman, learnt she had Alzheimer's disease. Three years later, she was in an "essentially vegetative state", according to her case records, and a court was deciding whether to honour her previously expressed wish not to be resuscitated if she died.
The court ruled in her favour, establishing, for the first time, that patients' care choices at the end of life could be officially documented in the medical record without being validated in court.
The Dinnerstein case set off a sea change in patient choice, but it remains an incomplete one.
Patients in the United States have little guidance in navigating end-of-life choices, and doctors have little incentive to offer it. That may soon change: On July 8, the Centres for Medicare & Medicaid Services (CMS) proposed a rule that would reimburse physicians for discussing "advance care planning" - treatment options for the very ill, including do-not-resuscitate orders - with Medicare patients. After a public-comment period, it is proposed to go into effect by Jan 1.
The reigning presumption in the US healthcare system is that treatment, no matter how hopeless or torturous, must be pursued, and that life, no matter how compromised, must be preserved... The problem is, it's becoming increasingly clear that many ill patients would choose differently if their choices were truly informed.
Ideally, such conversations will help patients reach the decision that best suits them. In cancer care that runs the gamut from patients who always want the most aggressive treatment or newest clinical trial available, to patients who follow a palliative course to control their symptoms, and patients who refuse all further disease management and use hospice to stay comfortably at home until they die.
Similarly, some patients will opt out of resuscitation, others will say yes to cardiopulmonary resuscitation but no to a stay in the intensive-care unit, and others will want the full menu of chest compressions, emergency medications and a life-maintaining stint on a ventilator.
There are no right or wrong answers - only what is right or wrong for each individual patient - and physicians should be paid for discussing these options with patients because they are hard, long conversations to have. They also need to occur at the appropriate time for the patient.
CMS will reimburse physicians if these conversations occur during the initial "Welcome to Medicare" visit. But that parameter is unlikely to include the Medicare patients who will most benefit from discussing advance-care planning only once they are quite ill.
Last year, CMS introduced billing codes for doctors to use when they discuss advance care planning with patients, but those discussions would not be reimbursed.
The new proposal arguing for reimbursement acknowledges that in the increasingly time-crunched US healthcare system, payment is much more likely to make these conversations happen when they should.
The rule is just a proposal, and we've been here before. A similar provision was included in the early drafts of the Affordable Care Act, but was stripped out after conservative politicians began labelling such discussions "death panels", charging that such conversations would too readily result in situations where ill or elderly patients were coerced into giving up care they wanted. With the Republican presidential campaigns already generating heat, we may hear such scaremongering again, and soon.
I'm not sure where those fears come from, but my experience as a clinical nurse in oncology and hospice-care suggests they are completely unfounded.
Pursuing the most aggressive treatment is far and away the norm. Despite Dinnerstein, the reigning presumption in the US healthcare system is that treatment,
no matter how hopeless or torturous, must be pursued, and that life, no matter how compromised, must be preserved.
Life is precious, so such attitudes are understandable. The problem is, it's becoming increasingly clear that many ill patients would choose differently if their choices were truly informed. Recently, a family friend learnt that she had early-stage Alzheimer's and, around the same time, breast cancer. She had chosen radiation to treat the cancer when, without fully explaining why, her doctor said he needed to double the number of treatments.
She wanted to do everything she could to stay alive, but worried about physically tolerating twice the radiation and wasn't sure she could arrange transportation for the extra appointments.
I suggested she tell her doctor that she would complete the original number of treatments and then, when those were done and she knew how she was holding up, consider the full course.
"People will usually work with you," I told her, and in the end she received the full number of treatments, but only because it was her choice. While equivocating over doses of radiation might seem trivial or even misguided to some, to her it felt like the difference between being in control of the care she received versus the dictates of care controlling her.
And that's what all this comes down to. This new rule has the potential to give the sickest among us the ability to say, "This is what
I want!" at the most vulnerable point in their lives.
We all have only one life, and one death. There is so much about our own life's end that we can't control; surely, we deserve the chance to learn about and plan for the part that we can.
NEW YORK TIMES
•The writer is a hospice nurse and author of Critical Care: A New Nurse Faces Death, Life, And Everything In Between.