Be the CEO of your care

The buck stops here when it comes to your health

The buck stops here when it comes to your health

Sometimes I wonder if we were called customers instead of patients, would we get better service?After all, patient implies you’re patient. Maybe if we called it service instead of care, providers would not have the option whether or not to care. You have the option to care or not, but you don’t have the option to give excellent service —  if you want to stay in business, that is.

Semantics aside, I find it quite shocking how late to the game health care is when it comes to pleasing its customers. It is only now, with government requirements for Medicare/Medicaid to have some kind of patient satisfaction program in place, that this is changing.  In Oct. 2012, the Centers for Medicare & Medicaid Services began withholding hospital’s Medicare reimbursement based on their quality performance. Thirty percent of the decision is derived from how well hospitals score on the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, a measure of customer satisfaction.

Yet, like most things in healthcare, providers have been slow to change, and usually they don’t do it unless they have to. I know a bit about this having spent my career in healthcare public relations working at two hospitals, a retirement community, an insurance company and a software company that developed electronic medical records systems. Speaking of which, how many non-healthcare industries still use old paper records? Hell, my chart is getting to look like a copy of War and Peace by now.

I’ve been a cancer patient for about 13 years. As Joni Mitchell said, I’ve seen it “from both sides now.” We have come to accept that if you have a doctor’s appointment, you have to take off work and often wait a very long time. If you complain, they can mark in your chart that you are a “difficult patient,” after all. As good patients, we are expected to wait — for scans and tests, for calls back from the office, for surgeries and other life-saving procedures. I’ve seen more mistakes and goof-ups than America’s Funniest Videos, except there’s nothing funny about it. You really have to be savvy and downright pushy to get the care you deserve.

One of the things I do when I advocate for patients is to encourage them to “be the squeaky wheel.” Unfortunately that is what you have to do sometimes. Indeed, there are many great providers out there. I’ve even had doctors who call me personally and nurses that get back to me quickly and obviously care. I now have a great oncologist who is a great researcher and physician AND has a  wonderful bedside manner. She cares, and it shows.

Yesterday a friend of mine, who is a breast cancer survivor and whom I consider a “newbie” to the medical maze (she is not stage IV), was having problems getting into see a specialist. She understandably was worried because of a growth on an ovary that doubled in size. She politely sent an email, asking to move up her appointment and for tests to be done beforehand. She was basically ignored. I encouraged her to call the nurse, which she did, but the nurse seemed uncaring and did not answer all of her concerns. She told me she was frustrated over the lack of coordination between physicians. I advised her to try her primary oncologist to get the test she requested. In short, she has had to jump through hoops to get things moving. That has certainly been my experience.

I always worry about older patients and patients who either don’t feel well enough to advocate for themselves or don’t have the personality for it. Very sadly, in some cases, I believe friends have died from being just too nice to get a second opinion or question their treatment. It shouldn’t be that way, especially when it comes to life and death. But that is the way it is for some patients.

So again, I implore you to be your own advocate or find someone capable and willing to do it for you. Don’t worry about hurting someone’s feelings or being a thorn in someone’s side. This is your life. Until healthcare catches up with other industries, this is the climate right now. And it’s a big reason why it’s worth it sometimes to travel to get the best care possible. If you’re lucky enough to live in a city that has an excellent National Cancer Institute-accredited cancer center, take advantage of it, but still realize there will be problems. It is up to you to be the CEO of your health. You are paying them to take care of you, and you deserve it.


  1. Lisa DeFerrari
    Jul 25, 2015

    I really appreciate hearing your perspectives on this, having been on “both sides”. It became clear to me early on that I was going to have to actively advocate for myself–but of course none of us are born knowing how to do that! It seems that it’s a continual learning process dealing with pretty much any aspect of the health care system except the most basic things.

  2. tamilb
    Jul 24, 2015

    Thanks Susan and thanks for your advocacy work!

  3. tamilb
    Jul 24, 2015

    My soapbox is to ignore statistics/averages, Chris. They are meaningless, outdated, and I feel can be detrimental to a person’s well-being, unless you’re someone like me who is so stubborn, I refuse to let them define me. Every one is different, every cancer is different. I have been living with stage IV breast ancer with mets to liver and elsewhere since Feb. 2008. I know people farther out than me and know people who have died. My motto is to focus on living, not dying and death sentences,but do everything in your power to lengthen and improve your quality of life. Feel free to peruse my blog and I recommend looking at my books, which include stories of people with all different kinds of stage IV cancer who have beat the odds.

  4. Susan Zager
    Jul 24, 2015

    This is so important us to be our own advocates for our medical treatment. This is for all Stages 0-4. To me it’s also about time advocates unite and connect with doctors to change this.
    Thinking about all that is going on with you and sending good wishes.

  5. chris
    Jul 24, 2015

    All I really want to know is the average life span after being diagnosed with stage 4 breastfeeding cancer that first went to my liver and then to my left lung. (Although I think the “scar” in my left lung was really cancer, not from pneumonia back in ’89. They never did a biopsy, just ct. scans to monitor growth.

  6. tamilb
    Jul 22, 2015

    Good advice Caroline!

  7. Caroline
    Jul 22, 2015

    As patients we are the hospital’s or doctor office’s customers. We need to remember this at all times. If we have problems dealing with the staff, we need to speak up. If I have problems with a nurse or someone, I will speak to the doctor and complain. And not let it drop until resolved.

    Where I am treated, there is a patient advocate available for all patients to help with dealing with staff if needed. I have learned to advocate for myself after 34+ years of medical crap (and its all crap). Currently I also advocate for my father as he deals with his recent issues. My mother doesn’t need as much assistance. But I am always happy to help anyone I can.

    My advice to everyone is to speak up and not be afraid to speak your mind. Doctors need honesty from patients and it also applies to dealing with their staff.

    And as a customer you can always take your business elsewhere.

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