Several years ago, my practice included palliative care for people with late-stage cancer. In this realm where no one survives, many of my assumptions as a health care provider were challenged. Among the things that people facing death taught me to reconsider were the judgments underlying much of the cancer "medicalspeak." I realized, with some horror, how this language can be used against patients, even by well-meaning providers. That realization prompted me to write this essay, which was originally published on cancerlynx.com, a support and information site for people with cancer. What follows is a newly edited version of that article.
Cancer patients whose therapies have not succeeded are often said by their physicians to have failed therapy. When chemotherapy doesn't stop the spread of a tumor or when radiation can't control metastasis, the patient is reported in the weekly cancer conference to have failed treatment. Many cancer patients have heard the failure word, and they use it to describe their treatment history, as if it were a personal attribute. A young woman with metastatic breast cancer told me, with downcast eyes, "I failed chemotherapy, radiation and surgery," as if they were a test. (Of what?)
Oncologists invest a great deal in the success of treatment, even feeling personally defeated when a treatment doesn’t work for a given patient. They are trained to see death, decline and disability as enemies against which they do battle. (Susan Sontag’s brilliant essays on cancer and labeling are evidence of the pervasiveness - and harm - of the “battle” metaphor.) The success of medical weapons in the fight against disease defines physicians’ competence as practitioners and the impact they have on their patients, whose lives they hold dear. But this philosophy is flawed. Despite their attempts to maintain a degree of healthy objectivity, thinking in the “battle” model can lead physicians to view treatment failures as their own failures because they are operating more as generals in an army than as partners in an intimate human interaction, that of patient and provider.
Perhaps it's easier for nurses because we aren't considered professionally responsible for the patient's disease. Perhaps it's easier for us to accept medical treatment failures as inevitable in some cases and move on to deal with the consequences, controlling symptoms and meeting psychosocial needs, keeping our eyes on the holistic picture. Nurses are proud of our historically holistic focus, reinforced in nurse education programs and in our professional literature. We talk about collaborative partnerships with patients, not about prescribing. The paternalistic model was discarded as ineffective by nurses long ago. In this regard, nurses have the advantage.
I am convinced physicians could learn a great deal from reconsidering the assumptions underlying their use of the word failure. I dissect these assumptions in the following paragraphs.
Assumption one: Death, decline and disability are our enemies; to let them win is to fail. So if failure is defined as death, decline and disability, how is success defined? The options range from the ridiculous to matters of simple individual preference. Immortality? Extraordinary longevity? Cure? A pain-free death? A death that imposes minimal burden on patient and family? A death that occurs expectedly after a chronic illness, rather than suddenly? A death that occurs suddenly, unaccompanied by a prolonged period of decline and disability? None of these is objectively discernable or universally endorsed.
The fact is: death’s timing and trajectory are often uncontrollable. To think otherwise is to delude oneself, and no health care practitioner has that luxury. Many people are diagnosed with cancer at the point where treatment will not cure them and may not extend their lives. In these people, death, decline and disability are inevitable. In defining death, decline and disability as failure, I fear that physicians risk relegating incurable patients to a mental list of those whom they would rather not think about, preferring to concentrate on those who represent opportunities for success. (Who wouldn’t?) Such an attitude would only fuel the underdeveloped state of palliative care, and rob both physicians, who (make no mistake) still direct health care priorities, and other health care providers of opportunities to make tremendous contributions to the care of people with terminal illness and their loved ones.
Assumption two: It is the patient, not the treatment, which fails. This is the language that is used. But who is believed to be serving whom? The patient is not responsible for the treatment's reputation, success or well-being. Even inadvertently suggesting that treatment failure is somehow the patient's fault is irresponsible, and can only compound their suffering.
I hope that I’m wrong, especially about the second assumption. It’s unthinkable to me that a healer would hold a patient responsible for the therapy’s success, although I have heard health care providers (nurses included) blame people for their own state of health or illness.
I would like to see failure redefined by my colleagues in medicine to signify non-achievement of mutually agreed-upon treatment goals. These goals may be symptom control, life prolongation, or preparation for death, among others. They may include family members and friends. They may include cure and non-recurrence, if achievable. They may include having one good day, or enjoying one more meal or family gathering. Regardless of the specific nature of cancer treatment goals, they must be agreed upon by patient and provider. Then failure could be seen as a failure of the treatment plan, not failure of the provider or of the patient. I hope redefining failure would help physicians and patients act more like a team in designing treatment plans and mutually negotiating goals. More importantly, it could eliminate from medical language the notion that patients fail therapy, an idea that can only be damaging to patients, to health care, and to providers.


Salon.com
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