What do patients want, anyway?

After I blogged recently about patient complaints, an anonymous nurse left a thoughtful comment about the difficult working conditions that hospital nurses deal with daily – the long shifts, the interruptions, the frenetic multi-tasking and, yes, patients and families who are rude and demanding.

If nurses don’t respond quickly enough or if they make a mistake, it isn’t on purpose, she wrote. “I feel for the patients, but they need to understand our side as well.”

Coincidentally (or maybe not), an essay by registered nurse Theresa Brown appeared this week in the New York Times, exploring the growing emphasis on patient satisfaction and why this trend may end up compromising care rather than improving it. Hospitals aren’t hotels, she reminds us. “In order to heal, we must first hurt.”

Although it may not be obvious, there’s a common thread here and it has to do with patient expectations.

What Do Patients Want, anyway?

They want outcomes that are perfect, argues a blogging emergency-room doctor. They want to be paid for their time in the waiting room, suggests someone else.

A recent analysis by DrScore.com claims to have found the answer, based on 36,000 patient satisfaction surveys submitted to its website: They want a short time in the waiting room and a longer visit with the doctor, and they want a doctor who cares about them.

My sense is that the focus on the patient experience has been long overdue. Health care has historically been mostly a one-way street: Health care professionals provided care and patients received care. This may have been a comfortable arrangement for providers but it hasn’t always been best for patients, and patients these days want more say – or, at the very least, more consideration of the health care experience from their perspective.

It’s understandable that many health care folks worry about where this is headed. Will patients start dictating the course of their care? Will satisfaction become more important than good clinical decisions? Are we stampeding off the cliff?

For what it’s worth, this doesn’t have to be the hostile takeover of health care by patients that some envision.

Patients may not know as much as clinicians but this doesn’t mean they don’t know anything or are incapable of learning.

Most patients understand the difference between a hospital and a hotel.

Most patients understand that health care sometimes involves pain, discomfort and waiting.

Some patients are unreasonable (they’re probably unreasonable in other areas of their lives too) but many patients are more willing to be reasonable than they’re given credit for.

What do patients want? They want to be seen as a human being. They want to be treated as an individual. They want to be heard. They want to be respected for what they know. They want the health care experience to go smoothly. They want information. They want glitches to be acknowledged and addressed. They want to feel it’s OK to report a problem with their care. If there’s going to be pain or discomfort, they want it to be minimized. If the news is bad, they want it to be broken with compassion. When something goes badly wrong, they want a response that demonstrates concern and a commitment to finding out what happened and fixing it. They want to feel confident that their clinicians have the patient’s best interests at heart.

What don’t patients want? They don’t want to be treated as if they’re a diagnosis or a body part or a problem. They don’t want their concerns trivialized. They don’t want to feel rushed. They don’t want decisions to be made behind their backs. They don’t want to be spoken down to. They don’t want to feel judged. They don’t want their trust to be betrayed. They don’t want to feel abandoned. They don’t want to worry that if they register a complaint about their care, they’ll be labeled as whiny, unreasonable or difficult.

Admittedly this is an unscientific view. But it’s gleaned from many hours of talking to other people, listening to conversations and looking for the common threads in what patients like and don’t like about the health care experience.

It’s a hard conversation to have without someone resorting to defensiveness. The conversation might be less difficult, however, if clinicians and patients would make fewer assumptions and actually listen to each other. It’s not easy being a clinician but it’s not easy being a patient either. We could all stand to cut each other a little more slack.


3 thoughts on “What do patients want, anyway?

  1. I want the money that goes into the fireplaces or pianos (yes, there’s one in the metro with a piano,) fancy lighting and all the fancy bells and whistles to be scratched, and that money to go into more staffing, better beds and less paperwork/computer time for the people who I am paying to take care of me. The rooms they have for OB patients now with fancy bathtubs, computers, beds for the spouse – get real! I’m there to get better, not be wined and dined. I could go on and on, the list is endless. Enough of the fancy, let’s just TAKE CARE OF PEOPLE AND GET THEM WELL. And yes, I work in a hospital myself.

  2. It isn’t necessarily the demands of the patients and families. For me it is the constant demand of management asking the nurses and other staff to do more with less especially in the long term care area.

  3. Hi Anne
    Very well put. Such a complicated subject, yet so tempting to generalize about patients’ expectations, and whether they’re reasonable or unreasonable.

    But I’ve often observed that when physicians get sick and suddenly find themselves on the cold end of the stethoscope, they invariably report profound insights into what it’s really like to be the one wearing that drafty hospital gown – often as if this is a major news flash to them. Invariably, they find the humiliation, helplessness, vulnerability, fear, lack of control, embarrassment and discomfort of being sick surprisingly distressing.

    Since surviving a heart attack and subsequently becoming a ‘frequent flyer’ of the medical system due to ongoing cardiac issues, I’ve done considerable musing on what patients want, and I think it can usually be boiled down to pretty basic needs. As patient advocate Trish Torrey described it recently, it’s all about “channelling our inner Aretha Franklin” – or simply put, R-E-S-P-E-C-T.

    We know, for example, that the majority of medical malpractice lawsuits are not launched because of greedy patients and their even greedier lawyers, or because of surgical instruments forgotten in our abdominal cavities, but instead because patients say they were rushed or ignored or treated poorly. The University of Toronto’s Dr. Wendy Levinson, who has studied doctor-patient communication for decades, is perhaps best known for her landmark 1997 study on this reported in JAMA. She studied two groups of physicians: one group who had never been sued, and another group who had been sued at least twice – in order to identify any significant differences between the two groups. The differences had nothing to do with the amount or quality of clinical information doctors gave their patients, but entirely in HOW the doctors talked to the patients.

    In short, as you say here about patients: “They want to be seen as a human being.”

    Thanks, Anne – keep up the good work.

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