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.
Case Presentation
Mr. S presented to the emergency department at a US Department of Veterans Affairs (VA) medical center with abdominal pain from recurrent pancreatitis. The patient aged > 65 years had a history of depression, ESRD, and was receiving hemodialysis. A computed tomography scan revealed a new pancreatic mass, and he was referred to the palliative care (PC) department nurse practitioner (NP) for a goals-of-care discussion. PC was informed to assist with hospice care initiation: The patient elected a do-not-resuscitate (DNR) code status and hospice care.
At the consultation, Mr. S stated that he had decided to forego life-prolonging treatments, including hemodialysis, and declined further evaluation for his pancreatic mass. He shared a good understanding of concerns for malignancy with his mass but did not wish to pursue further diagnostics as he knew his life expectancy was very limited without dialysis. He had been dependent on hemodialysis for the past 10 years. He had briefly received hospice care 5 years before but changed his mind and decided to pursue standard care, including life-prolonging dialysis treatments. He reported no depression, suicidal ideation, or intentions of hastening his death. He stated that he was just physically tired from his ongoing dialysis, recurrent hospitalizations, and being repeatedly subjected to diagnostic tests. Mr. S added that he had discussed his plan with his family, including his son and sister-in-law who is married to his brother. Mr. S previously identified his brother as his surrogate decision maker.
Mr. S shared that his brother had sustained a traumatic brain injury and was now unable to engage in a meaningful conversation. He shared that his family supported his decision. He also recognized that with his debility, he would need inpatient hospice care. On finding out that Mr. S’s brother was no longer able to act as the surrogate decision maker, the PC NP asked whether he wanted her to contact his son to share the outcome of their visit. The patient declined, adding that he had discussed his care plans with his family and did not feel that his health care team needed to have additional discussions with them.
Mr. S also reported chronic, recurrent right upper quadrant pain. He was prescribed oxycodone 10 mg every 4 hours as needed; however, it did little to control his pain. He also reported generalized pruritus, a complication of his renal failure.
After 1 week, Mr. S was transferred to the inpatient hospice unit. At that time, he allowed the hospice team to contact his son for medical updates and identified him as the primary point of contact for the hospice team if the need arose to reach his family. Due to the restrictions imposed by the pandemic, Mr. S had virtual video visits with his family. Mr. S developed intermittent confusion and worsening fatigue over time. His son was informed of his deteriorating condition and visited his father. Mr. S died peacefully 2 days later with his family present.
Multidisciplinary Inputs on the Case
Medicine. In discussing the case with medicine, the PC NP was informed that the goals the patient had for his care, which included stopping dialysis, having a DNR code status and pursuing hospice care, along with the patient’s pain symptoms prompted the PC consultation. The resident also shared concerns about the patient’s refusal to have his surrogate decision maker and family contacted regarding his decisions for his care.
Palliative care. After meeting with the patient and assisting in identifying goals for care, the PC NP recommended initiation of hospice care in the hospital while the patient awaited transfer to the inpatient hospice unit. The PC NP also recommended a psychiatric evaluation to rule out untreated depression that might influence the patient’s decision making. A follow-up visit with nephrology was also recommended. Optimal management of his distressing physical symptoms was recommended, including prescribing hydromorphone instead of oxycodone for his pain and starting a topical emollient for pruritus.
Nephrology. The patient’s electronic health records (EHR) showed that he informed nephrology of his desire to pursue hospice care and that he decided against further dialysis, including as-needed dialysis for comfort. The records also indicated that the patient understood the consequences of discontinuing dialysis.
Psychiatry. The patient’s EHR also showed that during his psychiatric visits, Mr. S reported he had no thoughts of suicide, and it was against his spiritual beliefs. He said he made his own medical decisions and expressed that his health care team should not attempt to change his mind. He also said he understood that stopping dialysis could lead to early death. He stated he had a close relationship with his family and discussed his medical decisions with them. He was tearful at times when he talked about his family. Mr. S shared his frustration about repeatedly being asked the same questions on succeeding visits.
