BWH Clinical Ethics Case Review, a monthly newsletter, is published by the BWH Office of Clinical Ethics. Each issue highlights a BWH case that posed an ethical problem for a patient, family members and/or caregivers, leading to an ethics consultation and BWH Ethics Committee discussion. Please note that because cases are based on actual ethics consultations, some details may have been altered in order to protect patient privacy and confidentiality.
The Unrepresented Patient
“How Should We Make Decisions for a Patient Without a Surrogate?
This issue of the BWH Clinical Ethics Case Review highlights a case in which an elderly patient lacked decisional capacity and had no one to speak for her. The team requested an ethics consultation to help address ethical concerns around life-sustaining treatments and long-term nursing care placement.
The patient was in her 90s and lived alone. Her husband had died and she had no other family. Years earlier, she had appointed a sibling as surrogate decision maker by proxy document, but after the sibling died, she hadn’t designated anyone else for the role. The patient had one close friend who visited frequently, and a member of her former knitting club occasionally stopped by. Her only other supports were light housekeeping and meal delivery. Otherwise, the patient lived independently and, except for occasional falls, was in good health for her age.
When the patient didn’t answer the door one day, her friend called 911 and EMTs found her on the floor. She was taken to a community hospital and determined to have seizures and respiratory difficulty requiring intubation. She was transferred to BWH for seizure evaluation. At the Brigham, she was eventually extubated, but it was determined that she lacked decisional capacity.
The clinical team was unanimous that her poor nutritional state and advanced age would make recovery difficult and slow. Because she had trouble protecting her airway, the team anticipated she would need a tracheostomy (breathing tube inserted through the neck into the windpipe) and a percutaneous endoscopic gastrostomy or “PEG” (feeding tube inserted through the abdominal wall into the stomach). With these life-sustaining interventions, she would have to move to a nursing facility, most likely for the rest of her life.
Some limited information emerged about the patient’s advance care planning. In a note from a visit with her primary care physician a year earlier, the PCP had written, “She prides herself on her ability to live alone. If given the option of dying or going to a nursing home, the patient would rather die.” Many of the clinicians caring for the patient questioned whether she would want a tracheostomy, since it would consign her to a nursing facility.
An ethics consultation was requested to help identify an appropriate treatment plan and goals of care, now that the patient was unable to live independently.
There is a growing epidemic in the U.S. of patients who “come to a catastrophic medical event without having provided clear preferences about life-sustaining treatment and without having designated a surrogate decision maker” (Courtwright & Rubin 2016). Often referred to as “unrepresented” or “unbefriended,” many such individuals are elderly, with comorbidities that diminish capacity. As they reach the extremes of old age, the family or friends who could have served as surrogate often become unavailable through illness or death.
Making treatment decisions for the unrepresented patient with significant medical problems presents unique challenges. A fundamental principle in our health care system is that patients have authority to accept or decline recommended interventions. Patients retain this right of self-determination even after they lose decisional capacity. Ideally, a previously designated surrogate is available to assume decision-making responsibility in this situation. The surrogate is charged with exercising “substituted judgment” – guiding the course of care based on knowledge about the patient’s own values and priorities.
When substituted judgment is impossible due to surrogate unavailability, BWH policy recommends striving to reach “synthetic judgment” about the patient’s preferences. This approach calls for combining an assessment of the patient’s best interests from an objective medical perspective with a diligent effort to gain an understanding of who the patient is as a person. The goal of synthetic judgment is to ascertain what the particular patient would probably choose or want under the particular circumstances (BWH Policy 5.5.6, Medical Decision Making for Patients Lacking an Adequate Surrogate Decision Maker [“Synthetic Judgment Policy”]).
The Synthetic Judgment Policy outlines a multistep process for gathering information to support synthetic judgment decisions. These include:
- Making every effort to learn the patient’s life story and medical priorities through investigation of the patient’s background, including living arrangements, friends, community involvement, religious affiliation, prior health care decisions and discussion with previous care providers.
- Assessing the patient’s current response to his or her illness, considering freedom from pain, outlook and satisfaction with treatment already initiated.
- Attempting to identify any previously articulated wishes, especially concerning interventions that are relevant to the patient’s current situation (e.g. views about nursing homes, feeding tubes).
- Considering all available treatment options, as offered by any current caregiver.
Ideally, treatment decisions that emerge from this process should represent a consensus of what a multidisciplinary group of people directly connected with the patient’s care believe the patient would want. If no consensus can be reached and the options include invasive treatment or withholding life-sustaining treatment, the Office of General Counsel should be consulted. The Ethics Service is available to assist with the information-gathering process and to facilitate discussion through ethics consultation.
In this case, the patient’s care team and ethics consultants joined forces to unearth additional information about the patient. They talked at length with her two friends and PCP and invited them to participate in the ethics consultation. All three emphasized the patient’s pride in her independence and functionality and strongly believed she wouldn’t want to be institutionalized. The care team was reassured by the clarity of the patient’s wishes in this regard and reached consensus that the evidence supported a plan of care oriented to comfort and acceptance of the end of life. The patient was not given a tracheostomy or PEG and was referred to hospice, where she later died.
We welcome your feedback about BWH Clinical Ethics Case Review! Please email your questions and/or comments to BWHEthicsService@partners.org. To learn more about ethics consults, visit the Office of Clinical Ethics website. This newsletter is primarily intended for internal distribution to BWH clinicians. If you’d like to use this content for another purpose, please contact the BWH Office of Clinical Ethics.