When Intervention Requests Go Beyond the Treatment Plan

An ethical dilemma: Shelly’s parents have brought her to see a physical therapist at Kennedy Krieger Institute for difficulties she has with her gait. Treatment has progressed well, but her parents insist more progress could be made with more frequent sessions. The therapist recognizes that more frequent treatment sessions are unlikely to help and may even exacerbate the problem. What is the therapist to do?

A group of people holding hands on top of one another

At Kennedy Krieger, teachers and clinicians of every discipline help make meaningful changes in children’s lives, and parents often want even more services than prescribed, in the belief that more services will be better. Our Ethics Program has received a number of consultation requests over the years from providers working with children whose parents want more or additional services, or want to extend services beyond the recommended time frame. These situations can lead to ethical conflicts, as the provider wants to meet the stated needs of the parent but also must make clinically appropriate decisions.

One way of addressing this possible ethical conflict is to take a step back and use a strategy developed by Drs. Timothy E. Quill, Robert Arnold and Anthony L. Back. (See “Discussing Treatment Preferences With Patients Who Want Everything,” published in the Annals of Internal Medicine in September 2009.) With a patient who wants “everything done” regarding end-of-life decisions, they suggest discussing the emotional, cognitive, spiritual and family factors that go into making these decisions, and the factors’ burdens and benefits to the patient. Then, they suggest proposing a treatment philosophy that takes into account the patient’s values, preferences and clinical needs.

When discussing these factors, here are questions to consider that will help address a patient’s or student’s needs:

  • Affective: What worries, fears or other emotional experiences are coming into play with the request?
  • Cognitive: What is the parent’s understanding of the condition and its intervention? What are the family’s expectations and goals?
  • Spiritual: What guidance does the family’s religion provide on intervention decisions? What larger dimensions may be impacting their expectations?
  • Family: How does the condition affect family functioning? How will intervention decisions impact the family? What role do other family members (or community members) have in decisions regarding intervention?

The next time you’re confronted with a patient’s or student’s parent looking for intervention beyond your recommendation, consider asking the parent questions that illustrate the underlying approach you take to making recommendations and decisions. Once these questions are answered, you may find common ground for more fruitful discussion.