In a crisis situation, when someone you care about can’t speak for themselves, advocacy is straightforward: they need medical attention and you make sure they get it.
But the role of advocate is more complex when the person you care about has some ability to speak for themselves. Especially if their capacity changes from day to day.
In this case, an advocate needs to adapt their approach as the ability of the patient evolves.
My husband Matthew has often needed medical advocacy in the last eight years. And my role as his advocate has caused friction in our relationship.
In fact, my role as advocate has been one of our primary sources of conflict during this time.
You’d think it would be simple:
- He needs help;
- I provide it;
- He’s grateful for my assistance.
But real-life people in real-life health crises are much more complex than that.
The autonomy and identity of the sick person is at stake.
Everyone is stressed. Probably exhausted. And afraid.
It’s almost a recipe for conflict.
Despite my best efforts, Matthew has felt oppressed when I have acted as his advocate.
And I have felt frustrated that my efforts haven’t always been appreciated.
We aren’t the only ones who have struggled with getting this right.
Jaime Hartman, who blogs at Gutsy By Nature has Crohn’s disease. She has had seven surgeries as part of her treatment for Crohn’s. She also has severe iron-deficiency anemia that used to require blood transfusions.
She is living proof that a paleo healing protocol, combined with treatment for concurrent infections (in her case, a clostridium difficile infection which was successfully treated through a fecal microbiota transplant), can reverse even complicated chronic health conditions.
Jaime has had a lot of experience in the medical system, including times when she has needed her husband to advocate for her. She has some advice for caregivers who are acting as advocates:
“Balance is key. My husband and I had only been married a few months when I had my first surgery and health crisis so he had to learn fast! The best things he did empowered me to be my own advocate, the worst were when he took over and I felt powerless, even though I knew it came from his love and concern for me. My advice is to communicate and not assume you know what the person with a chronic illness would want. And understand that what he or she wants will likely change. And have a thick skin! I know that I wasn’t always my nicest self on those darkest days, but he didn’t take it personally.”
The right dose at the right time
Advocacy needs to be customized to the situation.
As Jaime points out, not only what the person with the health condition needs, but also what they want in the form of advocacy, is likely to change.
Earlier this week I talked to Matthew about what was helpful and unhelpful for him when I have acted as his advocate.
He advised that an advocate’s goal should be “empowerment rather than enfeeblement”.
Here are his recommendations for people who find themselves in an advocacy role:
- Keep an eye on the big picture to help discern patterns in the illness and recovery process that may not be evident to the person who is ill.
- Prepare for medical encounters in advance, with the goal of enabling the person with the illness to do as much self-advocacy as possible. This can involve reviewing the goals of the appointment or procedure, making a list of questions, writing down a timeline or preparing documentation, and/or planning who will say what. It is helpful to clarify the role of the advocate before each appointment. Preparation might also involve deciding ahead of time when an advocate will intervene, a well as any subjects the advocate does not have permission to talk about.
- Tell medical professionals why you are accompanying your loved-one to an appointment up-front: “I am here as a support person for Matthew because he sometimes has trouble remembering. I’ll be taking notes and may have some things to add.”
- Act as a record-keeper during the appointment: remember details, make sure the right questions get asked, and that the experience gets recorded.
- After the appointment, ensure that the results are filed so that they can be easily retrieved for future reference. Make sure the sick person knows where this documentation is stored.
- If the advocate is tempted to go ‘off-script’ during an appointment, do so carefully. Whenever possible, have a side conversation with the patient first.
- Know that excessive protectiveness on the part of an advocate can feel patronizing to the person in the role of patient. For Matthew, one of the most stressful aspects of having me act as his advocate is how fierce I can get with unhelpful doctors during appointments.
And my advice for caregivers who find themselves advocating for their loved ones in the medical system? In addition to all the advocacy-oriented advice on this list, make sure that you are prioritizing self-care.
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