Responsibility, respect and relationships are important for patients

At the risk of dating myself, I recall a time when “The Three Rs” summed up American education. In case you aren’t familiar with this phrase, it stands for “Reading, ‘Riting, and ‘Rithmetic.”

I think it’s high time we develop “Three Rs” for patients. Right now, Patient World is ruled by “E” words such as “empowered” and “engaged,” with “empowered” the big one. I think “empowered” is turning into a label, and I distrust labels because they imply a certain ideological mindset.  I don’t like calling myself an “empowered patient” any more than I like calling myself a “feminist,” although I have stood up for myself and others in both arenas.

So instead, I propose we adopt “Responsibility, Respect and Relationships.”  As patients, we are responsible for our decisions and our actions. You may want all the details of an upcoming procedure, or you may prefer not to know too much. You are responsible for how you communicate and how much you want to learn, just as you are ultimately responsible for deciding which treatment option to follow. It’s a big responsibility and it can be a lonely one. Only you know how you’ll navigate it.

We need to respect our doctors’ knowledge. I have asked my family doctor about things I’ve looked up online or in books, but I would never presume he should do something simply because I read about it. And while no one knows our own bodies’ aches and twinges better than we do, we shouldn’t assume we know why they act that way.  My prairie-stoic dad thought he was having leftover symptoms from West Nile virus when it was really a stage IV cancer. To this day, I kick myself for not insisting he see a doctor when he mentioned it, four months before he died. Self-diagnosing is hardly ever a good idea.

We need to value our relationships. I know how lucky I am to have had the same primary care doctor for more than 15 years. I’ve reached a level of trust I never thought I’d have with a doctor. My husband and I had many “one-off” visits before we found him, but he was worth the wait. I fear this type of relationship may be endangered if healthcare reform reduces access. But even if you see more healthcare professionals in shorter stretches of time, accepting responsibility and showing some respect can go a long way toward forging a trusting doctor-patient relationship in the time you have.

The best thing about the “The Three Rs” is that doctors (and nurses and PAs) can apply them too. It takes two to communicate, and we may be frightened or intimidated by the 50-cent words. So they can accept some responsibility for making sure we understand, knowing it may have to come after the initial appointment, especially for something big like cancer.

They can respect us and foster relationships built on trust by remembering they’re dealing with people, not diagnoses. I often tell people the difference between the oncology consult I fled from and the one who became my oncologist is he was mindful there’s a person attached to the breast.  He told me he would support my treatment choice, even if it wasn’t what he recommended. (In case you’re curious, I did end up following his recommendation.)

Communicating can be hard work, but it’s worth it—never more so than when our health and our lives are on the line.

Jackie Fox is the author of From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer, and blogs at Dispatch From Second Base.

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  • http://ethicalnag.org Carolyn Thomas

    Hi Jackie – excellent points here. Thank you for this thoughtful essay.

    As a heart attack survivor, I’ve had my fair share of experiences with all kinds of health care professionals – from one-off visits with specific specialists or cardiac technicians to ongoing longterm relationships with my cardiologist (and I’m still getting my brain wrapped around the reality that I even HAVE my own cardiologist now!)

    You are so right about the importance of relationships, yet for many clinical appointments, we don’t have time to even develop any kind of “relationship” other than being just the 10 o’clock appointment.

    After a particularly distressing stress echocardiogram test at our local hospital, I did what Canadians tend to avoid at all costs – I complained to the department manager about the distressing behaviour on the part of her two staff members. The manager took my complaint very seriously – perhaps because it was the second patient complaint in less than a week about the same two people.

    The result of that complaint was what I called “Top 10 Tips For How to Treat Your Patients”, a list that was not only discussed at her subsequent staff meetings, but ‘went viral’ throughout the hospital, was posted on staff room bulletin boards, and published in internal newsletters. It’s also at HEART SISTERS as “An Open Letter To All Hospital Employees” – http://myheartsisters.org/2009/07/10/open-letter/

  • http://secondbasedispatch.com Jackie Fox

    Hi Carolyn,
    Thank you for the comment and the great tips. I think I’ve seen them before–did you submit them to Grand Rounds? (If not, you should.) The one on stripping to the waist really resonated with me. Not to get into dueling blog posts but I touched on that recently when I blogged about modesty and breast cancer. HC professionals are so casual! Which is good, I guess–would have hated to have someone gasp or shriek when I disrobed, but still—-

    And I know what you mean about having your own cardiologist–I catch myself saying “my oncologist” and it feels weird, like “my hairdresser.” We’ll probably start collecting specialists as we get older — and here’s to us getting the chance.

  • http://ethicalnag.org Carolyn Thomas

    “Collecting specialists” – what an exciting new hobby to look forward to!! :-)

    A friend of mine calls this tendency in older people (comparing notes about all their physical ailments and doctors’ appointments) the “organ recital”! Love that…..

  • doctor

    Nice essay. Let me just mention another “e” word that always comes up- “entitled”.

  • http://www.foodandhealth.com doctorjay

    Jackie – There is a lot of wisdom in what you say and I agree with “doctor” who mentioned the “entitlement” attitude, which often the opposite of personal responsibility.

    FYI if your Dad was dead 4 months after mentioning he had symptoms related to an aggressive cancer the odds are that even had he gone to doctor and been Dx 4 months sooner it would not have changed the outcome. So let me add another “e” word and that is expectations. The sad truth is MDs cannot (despite their best efforts) prevents people from growing old and dying. Increasingly Americans seem to have unrealistic expectations about what modern medicine can and cannot do.

    • http://secondbasedispatch.com Jackie Fox

      DoctorJay,
      Thank you so much for your comments. You alleviated some of the guilt I had over wishing I had done something or said something to my dad. Sins of omission, you know?

      Wishing you the best in the new year.

      P.S. You and Doctor came up with good additional e-words! I may have to borrow those sometime :)

  • http://www.myheartsisters.org Carolyn Thomas

    DoctorJay – thanks for your observations about expectations.

    “…The sad truth is MDs cannot (despite their best efforts) prevent people from growing old and dying…”

    Well, unless of course you are Susanne Somers….. ;-)

  • Anonymous

    Jackie your article is appreciated.  It is interesting to see how medical care and expectations have changed over the 50 or so years of my life.  I have the privilege to have physicians who encourage a patient to learn about their care, ask questions, have discussions and support patient choice.  It is true that most patients who have a trusting relationship with a physician who honestly supports a patient’s choice, listens, etc that the patient will ultimately go along with the physician’s decision.  It is about not only technical skill sets but also about relationship. 
     
    There is a two way street in this process and at times it appears that there is an expectation of a patients to accept without question or explanation the physician’s decision and when the patient questions, they are perceived as “troublesome” “not compliant” among others.  How many people take their car in without asking questions?  Asking questions is not entitlement although those who perceive it to be so would better serve themselves and the community as pathologists.  

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