Ethics Recommendations Span Years for Some Patients
When someone requests an ethics consult, the patient’s social and clinical history is important to know. So is the history of ethicists’ involvement. “It is not uncommon for our consult service to be called multiple times over a number of years to assist with a care question that resurfaces,” says Christine Gorka, PhD, director of the Clinical Ethics Center at Passavant Area Hospital in Springfield, IL. There are certain instances when ethics becomes involved repeatedly:
- Ongoing questions about a patient’s decision-making capacity;
- Family-related dynamics that complicate decision-making, repeatedly, for the same patient;
- Social or financial issues that need to be addressed whenever a patient presents for care;
- Goals of care might need to be reconsidered considering a patient’s current clinical status.
Ethicists were consulted four times over a four-year period on capacity, decisions about goals, and discharge planning for a patient with a chronic illness related to a life-long disability. The man was wheelchair-bound and dependent on others for his daily needs. Initially, clinicians perceived him as someone who could not live outside an institutional setting.
“He was remarkable in the fact that he had maintained his independence for most of his life and fought fiercely to continue doing so,” says Barbara Hinze, PhD, one of Passavant Area Hospital’s clinical ethicists.
During previous consults, ethicists documented the man had support available 24 hours a day, the same as he would have received in a care facility. This allowed clinicians to honor the man’s preference to be discharged home until it was no longer feasible. Family dynamics complicated the case further. There were frequent disagreements on who was the appropriate decision-maker. “Ethics clarified a path for decision-making during times of his incapacity,” Hinze reports.
In another case, a series of ethics consults spanned many years for a patient with long-standing cognitive barriers. Clinicians requested the first consult with a question about decision-making capacity. “We were not called for another 18 years, when questions around matters of decision-making appeared again,” Hinze says. The last few consults primarily focused on goals of care at the end of the patient’s life.
Ethicists previously noted the patient fared better with written materials than verbal descriptions. They also charted the patient identified an out-of-state family member as someone who should be involved in important discussions. All that documentation resulted in more patient-centered care at the end of the patient’s life. “We were better able to share his values, goals for treatment, and communication needs,” Hinze reports.
Passavant Area Hospital’s ethics service set a high bar for documentation. The first step was to create a database dating back to the first consult in 1987. “We expect to enter our 10,000th consult in 2020,” Gorka shares.
Since each consult is documented, there is a reliable record to which everyone can refer. “Having kept detailed records provides us a longitudinal picture of ethics involvement, and how various issues were resolved,” Gorka notes, adding such a system prevents needless rework. “One ethicist can pick up where another left off without ‘reinventing the wheel.’”
The benefits of thorough ethics documentation over a period of years goes beyond an individual patient’s care. “It has also allowed us to ask ethics-related research questions and contribute to the literature,” Gorka says. Ethicists used their database to analyze how the number of consults had increased over two decades.1 They also analyzed how gender and race factor into the timing of ethics consultation requests.2 “Building a culture where ethics recommendations are expected in the medical record firmly establishes the practice,” Gorka offers.
Ethicists receive occasional after-hours calls from clinicians, and share some advice informally. These late-night conversations went undocumented — until the ICU director called to request ethics chart its recommendations on the next work day. “I realized then that our culture had equivalent expectations for ethics consults as they did for clinical consults,” Gorka says.
- Gorka C, Craig JM, Spielman BJ. Growing an ethics consultation service: A longitudinal study examining two decades of practice. AJOB Empir Bioeth 2017;8:116-127.
- Spielman B, Gorka C, Miller K, et al. Gender and race in the timing of requests for ethics consultations: A single-center study. J Clin Ethics 2016;27:154-162.
When someone requests an ethics consult, the patient’s social and clinical history is important to know. So is the history of ethicists’ involvement. It is not uncommon for a consult service to be called multiple times over several to assist with a care question that resurfaces.
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