For those of us who are sometimes patients, and at other times care partners, it can be useful to have a checklist to make helping a friend or family member navigate cancer treatment, or treatment for any other medical condition.
Here’s a short list that can be used in any patient-with-a-bedside-care-partner situation. If you have any ideas for things that would be good to add, hit me up via @MightyCasey, or shout out to @Power4Patients, on Twitter.
Here we go.
- Make sure you – the care partner – have been named in your patient buddy’s Advance Directive as the person who can speak for your friend when they can’t speak for themselves due to intubation, anesthesia, or loss of consciousness. Here’s a handy link with downloadable forms to create an Advance Directive in all 50 US states.
- Since you’ll be speaking for your friend in situations where they can’t speak for themselves, it’s critical that you know what their wishes are in scenarios from “coming out of anesthesia” to possible life support situations. What are your friend’s wishes? These are sometimes tough conversations, since facing mortality isn’t something humans are naturally wired to do. Two tools that can help you and your friend figure out the what-ifs for their wishes are Engage With Grace and The Conversation Project. Pick one, get started.
- Do you have access to your buddy’s patient portal? Most EHR software platforms have “share” utilities where you can share your record with a care partner. Get that organized early in the care partnering process, so you can be able to answer questions about medications and patient history when your friend can’t speak for themselves.
- Speaking of medication lists, make one. It can be as simple as a notes file on your phone, or a printed sheet that you can refer to, and copy, for anyone who needs it. Update it as/if medications are added to your friend’s list. Make sure you have dosages and timing for all of them on that sheet or in that note file, too.
- Is surgery involved in the treatment plan? If so, make sure you and your buddy keep a calendar of pre-op testing requirements – blood work, scans, and so forth. A shared Google calendar can be a great tool here, or you could go old-school and just use a wall calendar with large blocks to write on each day.
- Will you need durable medical equipment (DME) during the treatment and recovery process? DME is stuff like wheelchairs, walkers, knee scooters, woundVAC systems. You can either buy or rent this gear. Pro tip: Amazon and Walmart pricing on this stuff is much less than from a traditional medical supply house.
- On that supplies front, there might also be what are called “expendables” required: bandages, wound wraps, bandage tape, wound packing material, and so forth. Another pro tip: if you need to buy this stuff, Amazon is the medical supply house with all the best deals. What costs you $40 at the local drugstore will cost you $8-10 or less on Amazon.
- Will home health care be part of your friend’s recovery? Working with the Nurse Care Manager at the hospital or health system where your buddy’s getting care, get a list of reputable home health agencies in your geographic area, and interview them. Asking questions about how they coordinate care across nursing, occupational therapy (OT) and physical therapy (PT) sessions. Recent personal experience here is that a home care agency that has a system in place for “who’s on next” and “when are they coming” that’s left in the patient’s home, useable by them (the patient) and the home care crew is who you want to hire.
Care partnering with someone isn’t something to be taken lightly – if a friend asks you to do it for them, it’s a mark of how much they trust you. If you’re someone facing a Big Medical Adventure, figure out who you trust enough to walk with you through that adventure, making decisions that align with your wishes when you can’t speak for yourself. It’s one of the most human acts of kindness you can perform, care partnering.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.