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”