Ask yourself what you really, really want from health care.
“I’m going to bet nobody really wants a doctor visit or a blood test or a CT scan or a night in the hospital . . . You want Thanksgiving dinner with your family. Or quiet time with your partner. . . Or a dive in the cool water. Or to see that Van Gogh or hear that chorale one more time.. . . Health care has no intrinsic value at all. None. None. Health does, joy does, peace does. . . A health care system that gives us each what we really, really want . . . can be a system sustainable for our futures and for our children’s future. It is different from the one we have . . . We just have to ask first, “What do we want?” . . . “When it comes to your health and health care, what do you want? . . . What do you really want? . . . What do you really, really want?” Don Berwick, plenary speech “Squirrel,” IHI’s 21st National Forum, 08 December 2009.
If your doctor’s office uses a team approach to manage your care, ask questions and provide feedback if you are confused about any aspect of your care. Doctors, nurses, and others in doctors’ offices that are organized under “medical home” principles (which include having a team of people to help manage your care) will generally be receptive to addressing your concerns since they spend a lot of time trying to figure out how to get good results for you.
When offered a treatment, ask what a good result looks like, ask what percentage of patients get that result, and ask what percentage of patients end up with troublesome side effects or complications.
Particularly for treatments for chronic conditions, be wary if told that the treatment helps everyone and doesn’t cause any problems. Consider checking it out at a reputable website like the Mayo Clinic, WebMD, or the National Institutes of Health to find out its advantages and disadvantages.
Realize that you can break out of the Greek tragedy mold — you can often get better results from health care by taking an active role. A feature of Greek tragedies is a chorus that chants, in effect, “A terrible tragedy is about to befall us,” and then it does. It doesn’t have to be that way. My new book Killer Cure: Why health care is the second leading cause of death in America and how to ensure that it’s not yours offers a toolkit to help you.
If someone you care about is hospitalized, ask that they be formally assessed for delirium several times a day (most delirium is overlooked, and assessment takes only about 30 seconds (see Wes Ely, attribution in 21 Jun Overview) and be assertive about trying to prevent delirium from arising.
Steps to prevent delirium include:
- Ask that doctors think twice before prescribing midazolam (tranquilizer) and/or fentanyl (narcotic analgesic). Midazolam use is “the strongest modificable predictor” that delirium will develop in a patient, and fentanyl is also a contributing factor, per Wes Ely.
- Ask that restraints be avoided if at all possible, and that mechanical devices that limit the patient’s free movement be avoided or removed at the earliest opportunity. About 50-80% of patients on ventilators develop delirium (Wes Ely); catheters, IV lines, etc. “can make patients feel trapped, leading to deliriuim.” (Belluck, see 21 Jun Overview for attribution.)
- Ask that the patient have ready access to their eyeglasses and hearing aids.
- Ask that lights be dimmed at night and that noise be minimized so that their sleep is not disrupted.
- Ask that they be assisted to get out of bed and move around as soon as possible. “Getting patients up and walking even though they are gravely ill, complete with feeding tubes, intravenous lines and tethers to ventilators . . . [leads them to] seem to recover faster, spending less time in intensive care and the hospital.” (Gina Kolata, “A Tactic to Cut I.C.U. Trauma: Get Patients Up,” New York Times, 12 Jan 2009.)