When Patients Make Unexpected Medical Choices
Background: In the United States, about 500,000 patients are receiving maintenance dialysis for end-stage renal disease. The decision to discontinue dialysis and receive hospice care tends to be more difficult than to withhold or forego dialysis.
Observations: Supporting patient autonomy is an important health care priority that is recognized by most clinicians. However, some health care professionals are conflicted when patient autonomy varies from their treatment recommendations. This paper describes the case of a patient on kidney dialysis who chose to discontinue a potentially life-prolonging treatment.
Conclusions: Respecting a patient’s autonomy to make informed decisions about their end-of-life care is a fundamental ethical and legal principle. Medical opinion should not and cannot overrule the wishes of a competent patient who refuses treatment.
After evaluation, psychiatry diagnosed Mr. S with mood disorder with depressive features and he was prescribed methylphenidate 5 mg daily and sertraline 25 mg daily. They also recommended continuing to offer dialysis in a supportive manner since the patient had changed his mind about hospice in the past. However, psychiatry followed the patient daily for 5 days and concluded that his medical decisions were not clouded by mood symptoms.
Discussion
Patients who are aged > 65 years and on dialysis are more likely to experience higher rates of hospitalization, intensive care unit admission, procedures, and death in the hospital compared with patients who have cancer or heart failure. They also use hospice services less.15 Often this is not consistent with a patient’s wishes but may occur due to limited discussion of goals, values, and preferences between physician and patient.15 Many nephrologists do not engage in these conversations for fear of upsetting patients, their perceived lack of skill in prognostication and discussing the topic, or the lack of time to have the conversation.15 It is important to have an honest and open communication with patients that allows them to be fully informed as they make their medical decisions and exercise their autonomy.
Medicare hospice guidelines also are used to help determine hospice appropriateness among veterans in the VA. Medicare requires enrollees to discontinue disease-modifying treatment for the medical condition leading to their hospice diagnosis, which can result in late hospice referrals and shorter hospice stays.16 Even though hospice referrals for patients with ESRD have increased over time, they are still happening close to the time of death, and patients’ health care utilization near the end of life remains unchanged.16 According to Medicare, patients qualify for hospice care if they are terminally ill (defined as having a life expectancy of ≤ 6 months), choose comfort care over curative care for their terminal illness, and sign a statement electing hospice care over treatments for their terminal illness.17 A DNR order is not a condition for hospice admission.18
The VA defines hospice care as comfort care provided to patients with a terminal condition, a life expectancy of ≤ 6 months, and who are no longer seeking treatment other than those that are palliative.19 Based on his ESRD, Mr. S was qualified for hospice care, and his goals for care were consistent with the hospice philosophy. Most families of patients who elected to withdraw dialysis reported a good death, using the criteria of the duration of dying, discomfort, and psychosocial circumstances.20
Role of HCPs
Health care practitioners (HCPs) are expected to help patients understand the risks and benefits of their choices and its alternative, align patients’ goals with those risks and benefits, and assist patients in making choices that promote their goals and autonomy.21 Family members are often not involved in medical decision making when patients have the capacity to make their own decisions.22 Patients will also have to give permission for protected health information to be shared with their family members.22 On the other hand, families have been shown to provide valuable emotional support to patients and are considered second patients themselves in the sense that they can be impacted by patients’ clinical situation.22 Families may also need care, time, and attention from HCPs.22
Mr. S was found capable of making his own decisions, and part of that decision was that his family not to be present for the goals-of-care discussion. He added that he would discuss the care decisions with his family. At the time of registering for VA health care services, Mr. S had provided his health care team with his brother and sister-in-law’s emergency contact information as well as named his brother surrogate decision maker. As Mr. S’s condition was expected to rapidly decline wthout dialysis, the HCPs would be able to notify family members once his condition changed, including death.
