October 2008

"When Family Members Demand Futile Care"

The Schwartz Center Rounds is a series of multidisciplinary forums where caregivers discuss challenging emotional and social issues that arise in caring for patients.  Names and clinical details have been altered to protect confidentiality.

Presenters: Inpatient day nurse (Nurse D), Inpatient night nurse (Nurse N), Intravenous team nurse (Nurse V), Critical Care physician (Dr. C), Cardiologist (Dr. H)

Abstract

Inpatient caregivers were the only advocates for an elderly patient’s wishes as family members demanded increasingly aggressive care. Hospital staff put the patient’s interests first and maintained professionalism, despite frustration with family members.

Clinical Summary

Mr. E was a frail 89-year-old man hospitalized with a systemic infection. Despite several weeks of treatment, Mr. E’s condition declined. He ceased eating, developed complications, and became less responsive. Mr. E communicated his desire to terminate treatment to hospital staff while his family requested additional interventions. Mr. E passed away in the hospital.

Issues Raised

Patient’s Wishes
Years before this hospitalization, Mr. E expressed his wish to avoid futile treatment to his primary care physician. Early in his hospital stay, Mr. E again shared this perspective as well as his desire and readiness to die with Nurse D, Nurse N, Dr. C and Dr. D. However, Mr. E’s family was not ready to let him go. Although Dr. C indicated that further treatment was futile, Mr. E’s children repeatedly requested diagnostic and therapeutic interventions to prolong his life. His daughter Trudy, a physician, tried to use her status as her father’s health care proxy to push for further diagnostics and aggressive treatment, even though Mr. E was competent. Mr. E’s son Tom was equally unwilling to let him go. Nurses D and N, caught between the patient’s desires and those of his children, wondered if there was a way to tell family members “You’re making him miserable.”

Communication
Nurse D, Nurse N, and Dr. C all tried to advocate for their patient, yet felt the family did not see the whole picture. Nurse N held Mr. E’s hand as he told her he was “tired of all this” and wanted “to go to heaven.” However, Mr. E was unable to tell his family “let me go,” leaving the medical staff to bridge the familial communication gap. When Nurse D shared Mr. E’s comments, his son Tom, the minister, interpreted them as “ambiguous.” When Nurse N told his daughter that Mr. E wanted to be left alone and allowed to die peacefully, Trudy became very angry. Dr. C listened as Mr. E said “I want to die” then faced a family that would not allow it. As his health declined and Mr. E became less responsive, the medical team was honest with his children about Mr. E’s wishes and the severity of his condition. Trudy focused on improving nutrition. When Mr. E pulled out his feeding tube five times, Trudy insisted that the nurses repeatedly replace it, ultimately asking Nurse N to tie him down to prevent Mr. E from removing it. Nurse D saw the feeding tube removal as Mr. E’s way of saying “I’m done” when he was no longer able to communicate verbally. When Mr. E pulled out his central line, Trudy wanted it replaced. Nurse V felt uncomfortable doing so as she saw Mr. E’s action as the strong message of a competent patient.

Staff Support
Tensions grew between Mr. E’s son and daughter and the nursing staff, touching all members of his health care team. Each nurse felt that the family challenged everything they did. Nurse D found it difficult to advocate for Mr. E against his family. Nurse N felt trapped, pointing out that while doctors can transfer a patient to another physician’s care, nurses have no choice and are obligated to care for the patients on their floor. Some staff found themselves hoping at times that the family would request a transfer. When Trudy disputed providers’ choices, the care team offered to transfer Mr. E to another facility; the family refused. Several nurses felt intimidated by Tom and Trudy and sought guidance from the charge nurse. The care team supported one another, each citing this mutual support as key to helping them through a difficult few weeks. The team united across disciplines and tried to use humor when possible to help them manage their feelings.

Family Dynamics and Denial
When Nurse N asked Mr. E why he allowed his children to do this, he explained that these have been lifelong family dynamics. On the evening of Mr. E’s death, though Nurse N told Mr. E’s children that he would likely die that night, they refused to believe it and left the hospital. Mr. E died alone. Nurse N was relieved that he was finally able to die. Trudy and Tom were shocked when informed of their father’s death and insisted on an autopsy. Nurse D cried as she completed the autopsy paperwork. All of the nurses involved were upset, feeling that an autopsy was a final violation of Mr. E. Even after the autopsy report was completed, Trudy did not accept the stated cause of death. A mental health provider in the audience tried to elucidate the family’s perspective, highlighting how difficult it can be when family members feel powerless to help their loved one.

Emotional Burden for Staff
Members of Mr. E’s care team all felt badly that they were prolonging his suffering. Mr. E’s caregivers described feelings of frustration, anger and fear. Care providers felt they were failing their patient. Nurse N shared her sadness, feeling that Mr. E’s children robbed his last days of joy and compassion. Nurse D felt the care seemed cruel, as if these children were torturing their father. Nurses N, D and V had a great deal of angst over this patient. They described feeling helpless and found themselves left with feelings of guilt and remorse. Dr. D called it “the most disturbing family interaction” of his career. An audience participant pointed out that these caregivers did not fail because they showed compassion for Mr. E. Another audience member suggested several strategies for these caregivers to care for and heal themselves in the wake of this experience.

Ethics of Withholding Treatment vs. Treating against Patient’s Wishes
Mr. E’s care team wondered about the rights of caregivers to refuse to provide care and the possible legal implications. Dr. C and Dr. D ultimately refused to perform diagnostic and therapeutic procedures which they considered futile. This case was brought to the Ethics Committee. The care team asked: What do we do if a family member asks for futile care? How can caregivers draw a line and say “I can’t do that”? The Ethics Committee read their assessment at Mr. E’s bedside in front of his children, stating that staff should not feel forced to do anything they considered inappropriate. This strategy helped staff feel empowered to change their approach to this patient. Once the Ethics Committee weighed in, staff members were better able to provide compassionate care without concern for litigation.

Lessons Learned