Focus Groups to Determine Surrogates Views Regarding Patient Preference Predictors
Condition: Normal Physiology
Study type: Observational

Summary: 
      Background:

      Some people cannot make medical treatment decisions on their own. The people who make
      decisions on their behalf are called medical surrogates. Sometimes surrogates cannot predict
      which treatment course the person or their loved ones would have chosen. The surrogates often
      become distressed because of making these decisions. Researchers think a tool called a
      Patient Preference Predictor (PPP) may be able to make the process easier. The PPP would
      predict what treatment the person would want. This is based on treatment preferences of
      similar people in a similar circumstance. Researchers want to interview surrogates to explore
      their views on the PPP.

      Objective:

      To explore surrogates views on incorporating a PPP into shared medical decision-making.

      Eligibility:

      People 18 years or older who:

      Have acted as a surrogate medical decision-maker within the past 3 years. This includes
      decisions about

      treatment, medication, hospice care, hospital admission, or discharge.

      Are not pregnant

      Design:

      Participants will be screened by meeting with clinicians in person or by phone to discuss the
      study.

      Participants will take part in a focus group. This is a small group of people discussing
      their thoughts and opinions. This will last for about 2 hours.

      Participants will be served a light meal.

      Participants will provide information about themselves and their views. They will talk about
      their past experiences making medical decisions for someone. They will discuss how they felt
      about these decisions.

      The PPP will be explained to participants. They will give their views on it.

      The research team will audio record the focus group and take notes.

      Participants will fill out questionnaires.
    

Detailed description: 
      Current clinical practice relies on shared decision-making between clinicians and surrogates
      to make treatment decisions for patients who cannot decide on their own. This decision-making
      process is meant to promote medical care that accords with the patient s own preferences and
      values. However, empirical data suggest that this model faces two significant challenges.
      First, both surrogates and clinicians have trouble predicting which treatment course patients
      would have chosen. Second, given the nature of the decisions, surrogates often experience
      significant emotional distress as a result of making treatment decisions. To address these
      concerns it has been suggested that the shared decision-making process might be supplemented
      with a Patient Preference Predictor (PPP). A PPP would provide a prediction of which
      treatment a given patient would want based on the treatment preferences of similar patients
      in similar circumstances. The present study proposes to interview surrogates who have been
      involved in making decisions for an incapacitated patient to explore their perspectives on
      the PPP and how to incorporate it into medical decision-making for incapacitated patients..
    

Observational model: Cohort
Time perspective: Retrospective
Sampling method: Probability Sample
Study population: 
        Any individual who acted as a surrogate decision maker for individuals undergoing any
        treatment.
      
Keywords: Surrogate Decision-making; Health Care; Medical Decisions; End of Life Care; Natural History