Commentary

When Patients Make Unexpected Medical Choices

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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.


 

References

Due to advances in medicine, people are living longer with the aid of increased options for life-prolonging treatments. These treatment options may improve the quantity but not necessarily the quality of life.1

Kidney failure can be treated with renal replacement therapy (dialysis or renal transplantation) or supportive care.2 In 2017, the global prevalence of kidney failure was about 5.3 to 9.7 million.3 In the United States, about 500,000 patients are receiving maintenance dialysis for end-stage renal disease (ESRD), and about 1 in 4 will stop dialysis before death, coupled with hospice enrollment.4 ESRD is 2 times more prevalent among veterans than in nonveterans, which can be due in part to high rates of comorbid predisposing conditions, such as diabetes mellitus, hypertension, and advanced age, among others.5 The decision to discontinue dialysis and receive hospice care tends to be more difficult than choosing to withhold or forego dialysis.6

A study conducted among patients who were taken off hemodialysis before death reported that the 2 most common reasons for the withdrawal were acute medical complications and frailty.7 A retrospective study among patients with ESRD receiving hemodialysis highlighted the underutilization of hospice care in this patient population.8 The study also found that those patients who were aged > 75 years, had poor functional status, and had dialysis-related complications, such as sepsis and anemia, were more likely to elect withdrawal of hemodialysis. There was no difference in overall survival or quality of life among patients who were aged ≥ 75 years with multiple comorbidities and functional impairment who elected conservative management vs those who started dialysis.8 Long-term continuous dialysis has been associated with a lower quality of life, increased dependence on others, and a variety of symptoms, such as pain, nausea, insomnia, anxiety, or depression.9

Conservative Care vs Medical Paternalism

In the United States, it is unusual for patients with ESRD to choose conservative care, and supportive services are less available for those who do compared with patients with ESRD in Europe, Asia, Australia, and Canada.10 A study looking at a small number of US nephrologists has shown they may have limited experience in caring for patients who forego dialysis and they are not comfortable offering conservative management over dialysis.10 Another small study from Sweden also showed that many nephrologists do not feel prepared for end-of-life care and conversations.11

Patients often rely on knowledgeable recommendations from medical experts. However, medical paternalism occurs when a physician makes decisions deemed to be in the patient’s best interest but are against the patient’s wishes or when the patient is unable to give their consent.12 Hard paternalism occurs when the patient is competent to make their own medical decisions, while soft paternalism occurs when a patient is not competent to make their own medical decisions.13

Patient autonomy is widely recognized as an ethical principle in medicine. It recognizes patients as well-informed decision makers who may act without excessive influence to make intentional determinations on their own behalf.14 Autonomy can be exercised at any point during the health care process.12 Although ethical and legal guidelines encourage physicians to recommend appropriate treatment, medical opinion cannot overrule the wishes of a competent patient who refuses treatment.12

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