Let me tell you about our family’s experience as a team, talking, supporting, and coordinating during the terminal phase of our son, Mike’s death from metastatic melanoma. Mike was living near Buffalo with his girlfriend, going to school, my wife and I lived in Albany, and my other sons lived elsewhere. Mike’s girlfriend’s parents (I’ll call them in-laws here – it’s shorter) also lived in Buffalo. We struggled with logistics, emotions, practicalities, money, clinicians, treatment, life. One day when my wife and I were in Buffalo at the in-law’s we realized we all cared about Mike and needed to coordinate, support, communicate regularly. We also realized that while Mike was the central, principal person, the whole expanded family was hugely impacted and impactful. We set up a weekly conference call-this was before smart phones, Skype, other media. During these calls we addressed everything: pain relief, bowel problems, transportation to appointments, where and whether to get a specific treatment, test results, which clinician, where Mike lived, fund raising, relationships among us, fear, grief, grief counseling, humor, location of and caregivers during Mike’s post surgical care, school, equipment, whether and when to start hospice, the weather (travel). While we didn’t include clinicians, we learned together more about what treatment was available and what kind of clinicians fit in with Mike’s outlook and our system. Found a radiation oncologist who especially fit in and connected with Mike and he became our lead clinician. We systematically went around to each person on the call, starting with Mike, everyone shared their issues, information, whatever. Everyone was heard, we got much better at active listening, we felt included, supported, loved. We knew what was going to be done during the week: assignments, appointments, travel. Sibs joined when possible. A moment for me was when Mike’s girlfriend was upset with me, because I told her mom the result of a test before she could tell her mom. It seems so small in the scheme of dying, but it helped set a tone, removed an annoying pebble in her shoe. These calls (and in person when possible) continued through to after Mike died. The day after he died, we went around the room, with all of both our family and the in-law family recounting how Mike died, where everyone was, how we came to the place of being together at that moment. Before he died, Mike told me that his last year was the best year of his life. He was in love and he was loved. Open dialogue amongst us made a difference. No unfinished business. The grief felt clean. I’m telling you this story now because I attended a symposium yesterday sponsored by the Massachusetts Department of Mental Health about a treatment for psychoses from Finland being tested at Advocates, Inc. called Open Dialogue. Once I get permission to share details with you from the presenter, Mary Olson, PhD, I will. It reminded me of our experience with Mike dying and beautifully reflected the values often spoken about at the Society for Participatory Medicine and in this blog. Open Dialogue – a magic lever for best health. More to come.
Get New Posts via Email
Your support is appreciated
Subscribe to my YouTube channel:
Search This Site
entrepreneur Blue Button lived experience magic lever Health Planning simulation cost Data community health partners storytelling shared decision making grace Politics portal Pregnancy relationships research immigrants People at the Center of Care HIT Quality Measures Just-in-Time decisions adherence disability EMR technology resilience policy Medical Record improv ONC culture medication Exercise sax Community Health OpenNote social media Pain perception health literacy Giving leadership The Quadruple Aim Simplicity questions Determinants of Health habits Outcomes Advocates Behavioral Health Recovery Fibromyalgia engagement informed decision-making Nursing end-of-life goals PCORI safety threshold haiku chronic pain caregiving grief transitions multiple sclerosis Care Partner ePatient Best health Communication fear choices care planning Rest Mentoring access innovation PHR PROM health team palliative care Standard Health Record Pharma interoperability Surveys music consent superpower balance MS evidence mindfulness catalyst employment caregivers customer service standards learning