October 26, 2016 — Blog Post
No Decision About Me Without Me: Health Literacy at the end of Life
How do you want to live out the last stage of your life? Does anyone know about your wishes?
For many, preferences include: spending time with loved ones, retaining independence for as long as possible, reducing pain to the extent possible while avoiding hospitalizations. For some, quality of life may be more important than surviving for an additional week, month, or even year, while for others, each additional day holds tremendous value. What is clear is that preferences for living out the last stage of life vary, that patients need and want evidence about their prognosis and quality of life, that these decisions should incorporate shared decision-making.
Yet often, the patient voice is obscured or even absent.
In January 2016, Medicare began reimbursing doctors for EOL conversations to discuss how patients want to live their last stage of life and goals for medical care. For many elderly patients, EOL conversations may include discussion about dialysis. Despite clinical guidelines promoting shared decision-making and evidence that patients want to discuss EOL with their physicians, discussion of dialysis initiation is seldom coupled with EOL planning. As a result, elderly patients offered dialysis may make what are effectively EOL decisions without adequate information.
This is especially important for adults over 75 years starting dialysis, for whom the 1- and 3-year adjusted survival is 63% and 33%, respectively, worse than many cancers and three times that of stroke. Our research and that of others have found that elderly dialysis patients experience higher intensity EOL care and worse quality of life compared to other Medicare beneficiaries with life-limiting illnesses, which for some, has led to regret.
EOL discussions have been shown to improve patient satisfaction with EOL treatments, reduce use of discretionary invasive treatments, reduce in-hospital deaths, and improve quality of life among patients and survivors. However, low patient health literacy is often cited as a key barrier to EOL conversations. Low levels of health literacy experience higher mortality and greater utilization of emergency services than higher literacy patients.
Health literacy is multidimensional, involving the intersection of patient skills and physician skills, and literacy demands imposed by the clinical environment.
- Use words patients understand. Our research has found that many patients do not understand terminology commonly used by clinicians in EOL discussions, including the words: chronic, prognosis, hospice, and intervention. Patients who did not understand many words used in EOL conversations did not understand that they were facing EOL decisions, and were less likely to complete advance care plans.
- Context matters. Many patients interpreted intervention to mean a family or group action intended to respond to addiction, instead of as an invasive medical procedure. When physicians did not clarify what they meant, these patient left confused, concerned, and distrustful.
- Use teach back to assess patient comprehension.
- Listen for preferences. Especially where EOL decisions are involved, preferences matter.
- Give patients the power and information to decide. Many studies have found that, even in the case of bad news, patients prefer to know prognosis and information about quality of life.
The last stage of life can have significant meaning, and how people choose to live their last stage should be up to them. To preserve their ability to choose- the health care environment needs to accommodate patients with different levels of literacy.