When values are unknown: Navigating complex medical decisions with professional guardians

Objectives: 1. Identify challenges with complex medical decision-making in a patient that has a professional guardian. 2. Describe the ethical principles involved when the decision-maker is a professional guardian. 3. Describe a communication approach to help navigate decision-making with professional guardians. Background: Decision-making is challenging when patients are unable to express their values. Surrogate decision-makers ideally make decisions using a model of substituted judgement. However, court appointed guardians without a personal relationship to the patient (i.e. a professional guardian) are usually unable to use substituted judgement. Professional guardians often need to make decisions based on best interests. With insufficient guidance from medical teams, guardians may elect for continued disease-directed interventions even when they are no longer in the best interests of the patient. Case Description: A 60-year-old woman with a history of cerebral palsy, hiatal hernia involving the stomach and colon, dysphagia requiring jejunostomy tube placement, and severe malnutrition was transferred from an outside hospital for surgical hernia repair. The patient lacked decision-making capacity. She had no known family involvement and had a court-appointed professional guardian. She had multiple prior attempts at feeding tube procedures and a complicated exploratory laparotomy at the outside hospital and was still not tolerating tube feeds. Surgery determined that hernia repair would be technically difficult and would require a significant post-op rehabilitation period. Palliative care and ethics were consulted to assist with decision-making. We gathered information about the patient’s life from people at her group home and learned about the risks and benefits from the surgical team’s perspective. We guided the surgical team to think through the benefits and burdens of the surgery and ultimately supported their conclusion that the surgery was not in the patient’s best interests. A clear recommendation not to proceed with the surgery was communicated to the guardian. Conclusion: Gathering collateral information about the patient’s life, using the principle of best interests, and clearly communicating a recommendation aids in decision-making with professional guardians and helps to avoid interventions which are more likely to harm than to benefit a patient.https://scholarlycommons.henryford.com/merf2019caserpt/1030/thumbnail.jp