Be the CEO of your care
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.