A continuation of episode 15's discussion of being an advocate, covering topics around conflict and self care. Sound quality on Meghan's mic is poor - it's been fixed as much as possible. Apologies! Guest: Linsey, a healthcare worker who has also been a health care advocate for a family member. Feedback: navigatingdisabilitywithme@gmail.com Links: Dr. Kristen Neff: https://self-compassion.org/BCalm: https://bcalm.ca/Family Caregivers of BC - including virtual and support line, art therapy, elder care, workers etc etc: https://www.familycaregiversbc.ca/family-caregiver-support-groups Tips When is it appropriate to push back? This is not about being difficult, this is about protecting the alignment between the patient/client and the care team.Facilitate communication - whether that's a language barrier or a communication difficulty - to be clear about patient/client's values, and help with alignment.Always keep patient/client's values centered!Take time to process new information before pushing back.How do you escalate concerns without alienating the team? This is loaded wording as it's the team's job to look after you. Always remain polite but other than that it is not the patient's family/friends' jobs to tip toe around the care team. The care team should be trying to understand YOU.An example that we're seeing in hospitals in Vancouver is how care teams are shifting to recognize and support indigenous patients with indigenous care teams as part of cultural safety.Most hospitals have spiritual practitioners, language interpreters etc. to facilitate religious or language needs.Share your/your loved one's story with the care team to flesh out who they are and what your concerns are. Stories are powerful! But remember that the care team's time is limited.Share the "why" of your questions to explain where you're coming from.How do you advocate when you feel intimidated by the medical system? Who are the people in the system you could go to? Social worker, nurse, case worker, GP. Start with whoever knows the patient/client the best.For clarity: around minute 22 Linsey refers to "Cerner". That is a type of electronic charting used in the Vancouver region. The electronic chart may not contain everything that was in the patient/client's old paper chart.Stories can reveal important medical details. Advocate for yourself by reading through your own lab results/imaging interpretations. Things do get missed!How can patients with cognitive or communication impairments still have their voice centered? There are many technological advancements but something as simple as writing down a basic alphabet chart (in any language) helps a lot. Patient can point out letters, or to "Yes" and "No".Occupational Therapy and Speech and Language Pathologists can help with technologies or strategies. iPad interpreters are in hospitals now, with well over 100 languages available.How should families handle situations where the patient's wishes conflict with what the team recommends? There's usually time given after plans are discussed, for everyone to process and ask questions. Ethics teams exist for when the care team's recommendations conflict with the patient/advocates wishes (if they can't come to a resolution together), but they are a last resort (before the courts). Care teams will try to resolve conflict without turning to boards/courts.Get your wishes down on paper (a representation agreement etc.) to help navigate conflict (but also make sure you discuss your wishes with your family/friends/advocate).How do you balance being a supportive advocate versus taking over? Center the patient/client! Advocacy can slip into control, due to fear. Watch yourself, as the advocate. "Am I amplifying my grandma's voice or am I replacing it with my fears?"Hospitals are becoming more respectful of language and cultural needs. Just ask about what you want to do, you will likely be welcomed to do any practice etc.Any financial barriers? Just ask the social worker! They'll have access to all sorts of resources and programs.Public Guardians are in use if a patient/client has no family or friends to act as advocate. This is largely for financial matters. They usually leave medical decisions to the care team.What was hardest about being the family instead of the professional? Linsey's response was masking her own fear, making decisions quickly, dealing with so many family members, wondering if she was doing the right thing according to her family member's wishes.Build your own resilience with rest/sleep, eating well, seeing friends, doing something else etc.What signs of burnout should families watch for? Emotional: irritability, short tempered, numb, teariness. Physical: exhaustion, headaches, getting colds etc. Relational: shortness with family/loved ones, withdrawing. Pay attention to if a good friend points out issues with how you're behaving.Look into Dr Kristen Neff's (University of Texas at Austin) work on self compassion. Treat yourself ...
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