By now I imagine anyone who reads the current articles and discussions making the rounds in palliative care circles is familiar with Amy Berman. Ms Berman is a nurse and health foundation executive who was 51 when she was diagnosed with an aggressive form of breast cancer that had spread. Knowing that there is no cure for the form of cancer that she has at the stage she has it, she chose palliative care with the aim of addressing symptoms and optimizing her quality of life over care aimed at either cure of her disease or even prolonging life. In “going public” about this decision and what it means from a treatment perspective, she is hoping to make others aware that this option exists and should be available to all.
I have found some of the dialogue around Ms. Berman and her decision interesting and indicative the extent to which curative care is still the default option in our society even when cure is almost certainly not going to happen and the patient has other goals. I have heard it said that Ms. Berman chose not to have “aggressive treatment” as if the care options she is pursing are not being pursued aggressively or aren’t even treatment at all. In Ms. Berman’s interviews she makes clear that she is willing to use virtually any treatment modality including options like surgery as long as that surgery serves her goal of optimizing her quality of life. Likewise, I have heard it said that she has “given up”. Again, she has refused to engage in any attempts to cure her disease- attempts which the facts suggest strongly will not succeed. However, she is clearly not given up trying to live as full a life as she can for as long as she has.
Why the big deal over this? I think Ms. Berman has very publicly violated a basic principal which is still well entrenched in our health care culture- that cure and the length of life that is supposed to come with it is the only acceptable goal of care at least at the onset of a disease. She has declined to avail herself of the vast resources that our medical system has to pursue cure. In our current system, quality of life can be a secondary goal, but only secondary. To challenge that premise as Ms. Berman has challenges a foundational pillar on which our health system is built.
But is Ms. Berman doing the right thing? First, we have to admit that there is really no “right” answer from a medical standpoint. Could Ms. Berman be “the one” who is cured of cancer of the kind and stage she has? Of course. Is that outcome statistically likely? No. Could someone who chooses conventional treatment have excellent quality of life? Sure and some of the responses to her interviews have documented that. However, the numbers are just odds, not certainties. Thus, the decision has to include the patient’s preferences, values, and beliefs.
Apparently, Ms. Berman, being fully informed, seems to have made what she feels is the right decision for her. Having journeyed with hundreds of patients through their decision making process over my career as a chaplain, I believe firmly that coming to one’s own decision as a patient that fits one’s own values, beliefs and life goals is really what is important. The fact that this decision seems to be working medically for Ms. Berman and giving her what she hoped for is critically important but almost secondary. The important lesson here is that Ms. Berman became fully informed, was clear about what her values and goals for the rest of her life are, and made a goals of care decision based on those factors. If the result of this analysis led her to aggressive convention care, that would have been fine as well. Good for her! And good for the rest of us to have the opportunity to learn from her example!