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Patient Supporter

At diagnosis, match each patient with a supporter who can facilitate patient and family care goal setting and planning.

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Who is your idea designed for and how does it reimagine the end-of-life experience?

This idea is designed for the patient and their family. A relationship built on trust over time is key to effective end-of-life care planning and patients deserve that level of support while they still want to receive curative treatment. A patient supporter is someone to listen, support caregivers emotionally, address family issues, and facilitate an ongoing conversation about care goals.

At diagnosis, match each patient with a supporter who can facilitate patient and family care goal setting and planning.

This is largely inspired by Child Life Specialists, who support pediatric patients and their families from diagnosis. Adults deserve this kind of support too.

This is also based on evidence that non-clinicians can be just as effective at having end-of-life planning conversations.

This solution addresses the following:

  • Advance care planning isn’t a point in time. Decisions at the end of life are deeply linked with personal and family history, situation, disease progress, changes in response to treatment, etc.
  • A doctor can’t just ask, “So, what are your goals?” A relationship built on trust over time is necessary to get to know a patient as a person and have meaningful conversations about what matters to the patient at the end of life.
  • Clinicians vary widely in their willingness to have, and timing of, conversations about patient goals. 
  • Conversations about patients’ goals are time-intensive and so, often don’t happen.
  • Patients could benefit from lightweight palliative care services well before they are enrolled in a palliative care program.  
  • I shadowed a hospice nurse and observed that her ability to build a meaningful relationship to support a patient and family was significantly higher after just a few visits in non-crisis situations.
  • Many questions (preferences, finances) are left unsettled when a patient dies or can no longer communicate.
  • Caregivers often have little support, especially if the patient isn’t enrolled in hospice. It is really helpful for family members to have someone around who is just willing to listen
  • “It’s more rare than not that the family of a patient on hospice is all on the same page”

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

If hospice social workers are willing to volunteer time to support patients at diagnosis, we can match them to patients who seek out supportive services and identify over time how they can be most helpful.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

- What should the responsibilities of this supporter be over time? What should a supporter do or not do?
 - How might this work operationally and financially? This solution would make sense for a payer or employer because they would benefit from savings, but ideally, the Care Supporter will be linked to provider workflow to update a patient's doctors on their care plan.
 - How might we match patients and supporters effectively?
 - Who should supporters be? Social workers? Trained volunteers?

Tell us about your work experience:

Shadowed in hospice and hospital palliative care services. WUSTL '17 CS + Healthcare. Co-owner @ UTrucking. Intern @ AVIA.

This idea emerged from

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