Compassion & Choices recently rolled out 7 Principles for Patient Centered End-of-Life Care to guide policy-makers and other reformers. Decent and simple, the principles --- focus, self-determination, autonomy, personal beliefs, informed consent, balance and notice --- don't seem earth-shaking at first glance.
But they have created a stir among people in the know who see the potential impact. Experts in end-of-life care tend to applaud the principles. Anti-choice advocates tend to condemn them. Both groups understand that serious attention to these 7 principles would radically change how the healthcare system in this nation treats terminally ill patients.
The first principle is focus. Changing the focus from the disease to the person who has the disease would create radical change indeed. Today patients and their experience with terminal illness is lost in a flood of tests and treatments that often subvert any effort to negotiate a fitting end to a well-lived life.
The other 6 principles flow from the first. And all pack a similar wallop in terms of changing the status quo. But staying with focus for a moment, let's look at two recent health care stories through a patient-centered lens.
Conservatives are in an uproar about medical research called "Comparative Effectiveness" which is included in the economic stimulus package. At issue is government funding and dissemination of studies to find out which treatments work and which do not. Does this sound like an evil plot to rush us all off to an early death? Conservative talk show hosts seem to think so.
Medicine is science-based and should favor treatments that work best and hurt patients least. Astonishingly, this is often not the case. Medical technology companies work hard to persuade doctors to use the latest thing, failing to provide even the most basic comparative information. Doctors often have no evidence at all that new, invasive treatments work any better than old, non-invasive ones.
Critics complain about focusing on the costs of the various treatments. But we're not talking about money here. We're talking about patients and their experience with terminal illness.
Cost aside, patients will rightfully focus on discomfort and harm that can be reasonably avoided by choosing less traumatic treatments. Take a most alarming example, also recently in the news:
Last November British researchers discovered that among cancer patients dying within 30 days of a dose of chemotherapy, more than a quarter actually died of the chemo, not the cancer! Yes, you read that right. A full 27% of these patients would have lived longer,(and certainly more comfortably) if they had rejected just one more chemotherapy course, with all its nausea, fatigue and other distresses.
This research came from Britain, where doctors work for the National Health Service and have no financial incentive to prescribe chemotherapy for their dying patients. Imagine what might be discovered were this research conducted in the US, where oncologists earn a substantial portion of income from the chemotherapy combinations they dispense and administer.
Comparing the risk and effectiveness of alternative treatments is just one way our 7 Principles would give patients hoping for a peaceful death a way to meet that goal when their time comes.
Currently, ignorance is a barrier standing in the way of patients' goals. Access to information can overcome it. Comparative Effectiveness Research must be shared, not only with physicians, but with patients as well. Only then can empowered patients make sound decisions informed by scientific understanding of the treatments they are offered.
That's what we mean by "focus" as the first patient-centered principle of end-of-life care. Focus is the doorway to empowering patients with the information and freedom to determine the best course for their own care.
Download our "7 Principles for Patient-Centered End-of-Life Care" brochure here (PDF).