Patient advocate and support - from a distance

Post date: 2020-08-13 07:05:02

A close relative in his early 70s, I'll call Jim, has experienced rapid hearing loss and the onset of other systems (dizziness, tiredness, jaw pain) within the last two weeks. Their primary physician is on vacation. They have sought care from the ER twice and walk in clinics. They are on their 2nd antibiotic. The don't seem to be getting any better. Until now, this relative has been in fairly decent health. We have just become aware of the current hearing loss situation over the past few days.

Myself and another family member are going to team up to help from afar (driveable distance but multi hours drivees, for each of us). Jim has been tricky to communicate with as he can't hear to talk on the phone. He won't text, and is not great on email. He has not replied to some requests for info, and has mentioned a few times that there is 'nothing to be done' about his health situation. He has mentioned getting a referral for an ENT but losing or misplacing that info. I think he is feeling very unwell, and is trying not to worry everyone. I also suspect he isn't cognitively 100% right now, based on the communication we have received. We have tracked down a neighbour, who has offered to check in on him if need be.

Here is what we are planning to do: one of us is visiting Jim tomorrow and will assess is living situation (does he need groceries, how is he managing pain?), document all medications Jim is on, get the names of all his doctors, document all doctors visits related to the hearing loss. We want to print this as a handout that Jim can take to appointments (and for our reference).

We want to call on Jim's behalf to try and schedule an appointment with his primary doctor (or whoever is covering), and advise office staff that Jim needs email communication now (not phone calls). We may be able to do this sitting beside Jim (who can talk just not hear, we could note take for him).

We are starting shared Google doc to keep track of info. We are going to have Jim sign a 'patient consent directive request form' we found on an Ontario government website and are also open to seeing a lawyer, though Jim may not have capacity for that now.

What tips and suggestions do you have for patient advocacy and care coordination from a distance? Will Dr's be open to calling us /Face Time-ing during appointments so that we can take notes etc.? Any other suggestions for managing through this? Thanks in advance

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