Patient-centred care is a term that gets bandied about a lot these days. But what does it really mean? How does our health system need to change to make it truly patient-centred? What reforms and innovations are required on a systems level?
How do front-line care providers need to change to make care truly patient-centred? And how do patients need to behave differently?
These are all questions that need to be answered if we're going to move from feel-good rhetoric to doing-some-good reality.
The U.S. Institute of Medicine defines patient-centred care as "care that is respectful and responsive to individual patient preferences, needs and values."
That's nice and inspiring and all-encompassing. It means everything and nothing.
There's a well-worn expression: "I don't know anything about art, but I know what I like."
Patient-centred care is a bit like that; you know when you experience it – and especially when you don't – but you can't necessarily articulate the characteristics.
In many ways, the concept is more easily expressed in aphorisms than a formal definition.
"The needs of the patient come first," is the tagline of the Mayo Clinic; "Every patient is the only patient" was carved above the front entrance of the Harvard Community Health Plan Hospital.
"Nothing about me without me," is the rallying cry of many patient activists.
Another description of patient-centred care is a more esoteric one: "Giving a patient a better day."
When all is said and done, that's what health care is all about: making patients feel a bit better.
Like many aspirational goals in health care, these things tend to be a lot easier to say than to do; a lot easier to promise than deliver.
Maybe a better way to understand what patient-centred care means is to articulate what is isn't.
So, what do patients dislike about being in the health system – aside from being sick, of course?
A number of things: the helplessness; the feeling of anonymity; the discontinuity of care; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness.
Judith John, a long-time health-care executive who was diagnosed with an inoperable brain tumour 16 years ago, has, along the way, become an eloquent and inspiring patient advocate. She says that in a system that has become obsessed with data, with measuring and metrics, we often lose sight of the importance of relationships, conversation and, ultimately, the person.
"When you're a patient, there's only one metric that matters," she says. "Treat me like a person. Not a chart, not a number, but a person."
The failure to do so, which generates so much angst and fear, stems from a fragmented system and from poor communication.
We have a sprawling, elaborate, expensive health system with buildings and equipment and all manner of health professionals, but we haven't quite figured out where the patient fits in.
There are a broad range of views on this – a spectrum that ranges from radical consumerism, a belief that the patient is god (or, if you prefer, the customer is always right), through to classic professionalism (or, more accurately, paternalism), which holds that medical professionals have to use their knowledge to give patients what is best for them and, in many cases, to protect them from themselves.
Let's not forget the etymology of the word patient. It means "to suffer," or more precisely to be silent in your suffering.
Perhaps we need a new word. At the very least, we could use a new definition.
Patient-centredness has come to mean "empowerment." But it does not – or should not – mean giving patients everything they want, when they want it.
Health care is not an all-you-can-eat Chinese buffet. But it's not a military exercise either, where patients must unquestionably follow orders.
In between those two extremes is the sweet spot: partnership, sharing of information, exchange of opinions, mutual respect.
Those are all the characteristics you want to see in a patient-provider relationship, and in the system-patient relationship, for that matter.
But while those ideals sound great on paper, they are not easy to achieve, especially in the high-octane daily grind that is modern medicine.
There is a whole academic literature on shared decision-making and its complexity.
Health-care providers need to act in the best interests of patients. But patients often have a view of what is best for them that differs radically from the guidelines and medical teachings.
Shared decision-making is more than about agreeing to disagree: It's a lot dirtier and messier than that.
It's about finding a compromise that respects medical responsibility and patient autonomy.
It's a delicate dance that we're going to have to master if we truly want quality, patient-centred, appropriate care.