Our society has wonderful well-meaning people across the political spectrum who are concerned about health care. As part of our political discourse and our societal culture, we have to continuously make difficult decisions about resources for health care and about how to be caring and fair to the broadest swath of our society. For a health professional working with and caring for individuals in need, the challenge is a bit different. It is to uphold that person’s needs and their values while caring for them through the challenge and sometimes the tragedy of illness, either for themselves or their family.
Our societal and political discussions may miss the individual nature of medical decisions and miss the fact that many decisions are less about the scientific evidence and more about the personal situations and beliefs of those people who are directly affected; namely the patient and their family. The evidence is important as a starting point however the science will never be able to totally take the person’s unique situation and point of view into account.
Sometimes what seems like a clear cut choice and decision to one person is equally clear cut to another person in a totally different direction. So our societal decisions have to be sensitive to the individual point of view and need to have the flexibility to allow individual decisions to be made by that person and their family working with a doctor, a therapist, a nurse, a social worker or another health professional. A recent article in the journal “Medical Decision Making” makes this point in an interesting way. The article entitled “How Long and How Well: Oncologists’ Attitudes Toward the Relative Value of Life-Prolonging versus Quality of Life-Enhancing Treatments” points out that the values of those who make the decisions strongly influences what those decisions are.
In that article, oncologists were surveyed and were asked to respond to two scenarios involving the use of a hypothetical new chemotherapy drug. In each scenario, the authors were able to calculate the cost effectiveness of each of the decisions. In one scenario, the oncologists were asked about the impact of the chemotherapy on the lengthening of life and in the other scenario they were asked about the quality of life impact of the chemotherapy. The findings showed that the oncologists valued the length of survival more highly than the quality of life when making the decision about the use of the chemotherapy. What if the law were only based on those oncologists value? Would we design payment to be only related to the “outcome” of longevity rather than the outcome of quality of life? The question to ask (which the article did not directly address) is whether or not that is the same value for an individual person and whether a cohort of patients given those same scenarios would decide the same way.
I do not know the answer for that cohort of patients and I can never know the answer for an individual at any point in time. That is because the answer will never be in the purview of a physician or a legislator or a health policy expert (or me for that matter!) but always in the purview of the patient and their family. In a classic article in Health Affairs in 2009, Don Berwick, who was recently head of the Center for Medicare and Medicaid Services, addressed this in “What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist”. In this article, he offered three maxims for true patient centeredness. They are:
1. “The needs of the patient come first.”
2. “Nothing about me without me.”
3. “Every patient is the only patient.”
He goes on to say, in his conclusion to the article that “I fear to become a patient”. He eloquently explains this fear:
“What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of me in a hospital gown, homogenized, anonymous, powerless, no longer myself. It is the sound of a young nurse calling me “Donald”, which is the name I never use – it’s “Don”, or, for him or her, “Dr. Berwick”. It is the voice of the doctor saying, “We think….,” instead of, “I think…,” and thereby placing that small verbal wedge between himself as a person and myself as a person. It is the clerk who tells my wife to leave my room, or me to leave hers, without asking if we want to be apart. Last month a close friend called a clinic for her mammogram report and was told, “You have to come here; we don’t give that information out on the telephone.” She said, “It’s OK, you can tell me.” They said, “No we can’t do that.” Of course they “can” do that. They choose not to, and their choice trumps hers: period. That’s what scares me: to be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand, to eat what I do not wish to eat, to be named what I do not wish to be named, to be told when I wish to be asked, to be awoken when I wish to sleep.
Call it patient centeredness, but I suggest, this is the core: it is that property of care that welcomes me to assert my humanity and my individuality. If we be healers, then I suggest that that is not a route to the point; it is the point.”
The point is that each person is unique and health decisions have to be made from that person’s point of view. Not from the point of view of a doctor, or a congressman, or a bureaucrat, or a health care manager. With health policy and health law decisions now being made by legislators based on expert advice from health policy experts, I do worry that our laws will not reflect the autonomy and flexibility that good health care requires.
The secret that we at Accolade have come to learn is that when the autonomy of each person is encouraged and supported, better care decisions are made and costs end up being lower. The fear on the part of our governing bodies and of other representatives of payer organizations are that the opposite will happen: that individualized patient decision-making will lead to unnecessary care and higher costs. Accolade has taught me that my belief in the individual making their own decisions being best for society as a whole is now supported by hard evidence and there is nothing that portends better for our health care system.