Partnering with Doctors for Better Care: Essential Assertiveness

I’ve had a handful of invaluable phone appointments with my mother’s doctors over the past few months that I had to specially request, but they were granted quickly and generously. 

Mom has finally turned the corner on severe depression that had lasted much, much too long. She no longer wanted to live, and that unshakable thought had been torturing her (and me) through seemingly endless days during the past year.

I’ve learned the agonizing way that in order for things to turn out best for my mother, I need to insert myself into the work of her doctors much more intensely than used to feel comfortable or appropriate to me.

I had to cross some boundaries, stop being the listener and responder, start giving specific, directive advice, and boldly disagree with plans and procedures that made no sense for Mom in the context of her history and unique personality.

In order for this to work, you need to cut through the belief system that someone with a professional degree in medicine could ever know what’s best for your loved one any more than I could.

Sadly, it took a few doctor oversights, med errors, and lots of suffering on Mom’s part before I was willing to step up and start asserting myself as an equal authority on her care. But once I was able to push our interactions with doctors to that level of collaboration, instead of hierarchy, things started rolling in Mom’s favor much more quickly.

return of the smile

Now working as a team, we put information out on the table and then make a plan that neither the doctors nor I could craft as carefully or effectively alone.

The reality is simply that the large majority of even the very best doctors today don’t have the time or depth of practice to be experts on each patient, and that’s where the caregiver comes in as an essential check and balance.

This can be a fine line to walk, and prickly too, if you’re dealing with a medical professional whose ego, insecurity, or need to control is obstructing progress, or if you’re not receiving enough specific information to be able to help with decision-making. 

Or perhaps you prefer not to be in that role, which is completely valid when you trust the doctor, but naive if you think unintentional errors will not occur now and then.

Unfortunately, but somewhat understandably, it will take most doctors some time to get to the place of trusting a caregiver to be a reliable and trustworthy advocate, to be well-versed on the medical issues at hand, to keep a level head, listen carefully, and know when to push and when to let go. (And the reverse is obviously true too, in order for caregivers to trust doctors.)

I can’t say I’ve mastered all those skills, but I think that doctors start to get a sense of when you’re tenaciously committed to the best possible care, and that’s when things can start to shift to a cooperative relationship which is, in my experience, the only way to reach the highest levels of quality patient care.

You just cannot assume anymore that:

  • doctors are thoroughly reading charts and past history
  • doctors in one area of care are collaborating, communicating, and getting updates from the other medical professionals involved with their patients
  • medication allergies or contraindications from past unpleasant or ineffective experiences will always be noted and remembered/revisited
  • doctors will always start off with the smallest, gentlest effective dose of a medication before increasing to the average dose in order to avoid undue stress

It can be difficult and awkward-feeling to tell a doctor to slow down and hold up a prescription until you have time to digest the pros and cons and think it through. Fortunately, I was able to hand pick all Mom’s new doctors based on word of mouth and community reviews, so she now has a team of professionals who are more concerned about her well-being than about being right all of the time.

Many of you are probably way ahead of me here, but I think I finally have it drilled into my head that…

 If a doctor continues to feel bothered by your thoughtful questions, comments, & educated, respectful opinions, it’s time to move on to a true professional who understands that it takes teamwork to get anywhere close to understanding the complexity of each unique senior who walks through the door.

Have you had success collaborating with doctors?  How did you find a good match?

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This entry was posted in advocacy, caregiver stress, support, and respite, dementia, doctors and medical, holistic health and tagged , , , , , . Bookmark the permalink.

8 Responses to Partnering with Doctors for Better Care: Essential Assertiveness

  1. Laura says:

    You are a wise soul with excellent advice.

    I once was a physician caring for frail elders, trying to support them & their care givers in creative, respectful ways. Now, I am the full time caregiver for my mother-in-law in our home & I really appreciate your perspectives, particularly this message. I would only add that it is worth looking for unlikely team members to give you info & courage & support – find & collaborate with folks who are not MDs who can advocate, educate & communicate with you & possibly with the others on your particular team. When my own Mom was dying it was a particluar nurse & a particluar aide who helped us all find wisdom & humor & common sense – they also gave me the courage to confront unruly MDs & others with inappropriate ideas or plans. I am waiting & searching for team members these days – it’s a little lonely – I need hugs & whimsy most of all …

    Thanks for being a cyber space team member for me.

    Be Well,
    Laura

  2. Hi Laura,

    Thanks for sharing your experience and suggestion about utilizing a wider team. I definitely agree. Really nice to hear from a physician on this issue!

    One of the downsides of my mother having to recently leave her hometown of 50 years is that she lost a wide, incredibly deep circle of support. We’re trying to build some of that back up now, but it’s slow going and difficult, if not impossible, to replace years of networking and friendship among her medical, social, and religious/spiritual contacts. Fortunately, a few of them have gone out of their way to use the phone and faithful letter-writing to keep that connection alive.

    Good luck in your efforts to build up a team for your mother-in-law. Hope you’ll continue to share as things progress.

    Thanks again for your affirmation and advice.

    Meg

  3. Hello Meg!
    I so admire that you have to come this better place with your mother’s doctors. This is an area that has been easier for me than you, as my mom has needed little attention from doctors (just some after her fall last year). That may change, of course, but just today I took her into town to see her wonderfully upbeat, caring and thorough new family doctor. She is a treasure and we are very lucky to have found her. It is hard to satisfy me, as a patient or as my mother’s advocate, coming from a long history of adult health issues that taught me (over the years) to be assertive and knowledgable and to find a doctors that respect that and work with it.

    Your posts are so full of good information and perspective, I truly appreciate them.

  4. Thanks Lesley,

    Nice to hear from you again. Glad you found a gem of a doctor for your mom. Think I know what you mean about learning the hard way. I had many issues also with my own health since I was young, and getting hurt more than I was helped in that struggle is what turned me into a holistic health person and probably a much better advocate for my mom and myself in the mainstream medical world.

    Thanks for your kind feedback.
    Meg

  5. Mona Johnson says:

    Margaret, I’m glad your mother is doing better. I found it very difficult to be an advocate for my father, especially long distance. You should feel good about all your hard work on your mother’s behalf.

    • Thanks Mona.

      I just try to stay above water, like all of you do (or did, in your case). When I actually can accomplish something, that’s an extra bonus. 🙂

      I feel very strongly about holistic health, so the advocacy in that arena comes pretty naturally, whereas when it comes to the more complicated financial and legal matters that have arisen, I get easily pummelled.

      Tax time should be intersting this year!

  6. Beth says:

    I was an advocate for my mother through her last years with cancer. I did start off trusting the doctors. Fortunately, we had a wonderful Dr. who was first concerned with her quality of life. However, he could not be there to make all the difficult decisions and I was there. My sister-in-law, a nurse, gave me the courage and insight to know I did not have to do everything any doctor told me to do. I made some tough decisions that were the right ones for my mother and for our family. I sometimes think back and start to doubt my decisions, but the peace we were blessed with in her passing helps me know it was right.

    • Wow, Beth. Sounds intense. You stepped up to do what you had to do, and did it well. It sounds like your mom was able to die when she needed to, instead of having her life drawn out for the sake of the living. I guess we can always beat ourselves up about the what ifs, but sounds like you knew in your gut that it was time to let go. Glad you had your sister-in-law to back you up. It’s excruciating to make those judgements alone.

      I’ve had enough agony making those kinds of decisions when my pets have been chronically and irreversibly sick. I can’t imagine what it will be like at the final stage with my mom if/when I’m in that role.

      Thanks so much for sharing that story.
      Meg

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