#446 – Minimally Disruptive Medicine

If you live with rheumatoid arthritis, especially when things are not going well – when medications need to be adjusted, or symptoms sorted – can be a full-time job travelling the width and breadth of the city, and sometimes the region or province (if there are no services where you live). Diagnostic tests, which include lab work, x-rays, MRIs or CT scans, visits to your family doctor, rheumatologist, surgeons or other specialist eat away your time and energy. You might have to schedule in visits to an occupational therapist or physiotherapist. You might opt to support your treatment holistically, so you may make appointments with a naturopath, chiropractor and/or massage therapist.

That’s a lot of time travelling, sitting in waiting rooms, then finally facing the person you are scheduled to meet. This type of schedule would tax the well and able-bodied, but imagine traversing this mine field of appointments when you are not well.

I’m reminded of the time when I was teaching full-time, and going for gold shots (Myochrysine), back in the day when patients did not do their own injections for some RA medications. Each week, I would go to my family doctor, and wait for my scheduled appointment, which was rarely on time. My doctor would inject me, then off I went. I was required to go for weekly lab work, which was also on a first come, first serve basis. Two appointments in a week that was already brimming over with work – lesson plans, marking, etc, grocery shopping and meal preparation, exercise and sleep. Socializing? Who had the energy! I’d fall into bed, often before 9 p.m., only to toss and turn and wake up tired, to do it over again.

Minimally disruptive medicine is a term used to address the reason why some patients discontinue their treatment protocols.

“One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives,” says Dr. Montori in Living with the “burden of treatment”.

Patients are tired. They’re often struggling to cope with a Marushcka doll-like stacking of symptoms and treatment plans, plus live their lives, which includes family, work, exercise and recreation. Doctors and other healthcare professionals may be oblivious of the toll that is placed upon patients with their many referrals, requests and recommendations. All done with the best of intentions – to treat the patient.

Patients generally want to do the right thing, but sometimes doing the right thing requires a fortitude that the patient simply doesn’t have. Their illness has eroded the ability to be resilient, to keep up with their burden of care. (That’s such a great phrase, isn’t it?)

My recent bout of shingles, reminds me how fortunate I am to be relatively free from the spin cycle of RA-related appointments. I am able to increase my resilience by practising heart-based stress techniques, which generally keeps me out of the doctor’s office.

Are you coping with a huge burden of care?  How do you foresee Dr. Montori’s vision “…to make healthcare primarily about the welfare of patients,” take shape in your treatment plan?

About these ads

10 Comments to “#446 – Minimally Disruptive Medicine”

  1. great post and so true! When I am flaring and seeking medical help, the time and stress associated with that alone surely makes the RA that much worse….very enlightening as always, Marianna

  2. Thanks Marianna for including a link here to my Heart Sisters article on “Living With The Burden of Treatment”. Dr. Montori’s work at Mayo Clinic was a real eye-opener for me when I first heard about it, and what he calls Minimally Disruptive Medicine to address the reality that patients live with day in and day out. You’ve captured it beautifully here, too, in your “marushka-like dolls” analogy. That’s JUST how I feel some days, too.

    regards,
    C.

  3. thanks a million for mentioning our work – we have more going here: http://minimallydisruptivemedicine.org
    Perhaps I can invite you, Carolyn and others to write there to add the voice of the patient to our effort to promote a patient revolution.

  4. Some of my online friends are just getting tired of the RA meds and the long term effects they are beginning see as a result. You and Carolyn are so right about the burden of treatment. I once calculated that over a 7 year period of going for shots and tests every week I missed the equivalent of a years worth of work hours. Of course being self employed I had to make up all the time in order to succeed

  5. Marianna, I do hope that the shingles gets stopped in its tracks and you don’t experience that much pain. You’re right about persistence with RA treatment. Sometimes it’s hard to keep up and easy to give up.

    • Hi Andrew,
      Mine weren’t really that painful, which is partially why I think it was missed in the first place.

      It’s so true re. keeping up and giving up.

      Thanks for stopping by. I hope all is well with you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: