A Californian hospital has many lessons to teach us in the search for better treatment of patients in Ireland in 2006, writes Haydn Shaughnessy
At St Joseph's Hospital in Whatcom County, California, the principle of patient-centred care is taken literally. Every time medical staff form a team to address a care issue, a patient or two is invited.
Patients help frame care agendas, deciding on the mechanisms for consultant access, developing care plans with their teams and taking charge of their own patient record.
These are a few of the novel concepts developed under a scheme called "Pursuing Perfection", an ambitious remit to create a beacon for change in healthcare delivery.
In Whatcom, "patient-centred care" equates to patient involvement in decision-making. Will we be heading that way in 2006?
Dr Marc Pierson, a senior physician at St Joseph's, heads Whatcom County's Pursuing Perfection project. Patients, he says, "have a vested interest to ensure that communication is clear, possibilities and risks are explained, and access to information is timely and geared to what patients and family members need."
The medical staff in Whatcom are charged with delivering on those key needs for patients. Perhaps the symbolic core of Pierson's philosophy is that in the Whatcom County healthcare system patients own their own patient records.
It's a concept that is close to the Irish model, according to the chairman of the Irish Medical Organisation's General Practitioner Committee, Dr Martin Daly.
"IMO policy puts patients at the centre of their own care and doctors, nurses and care staff are managers of the care plan. The best form of care plan is where the patient is informed and where treatments are explained clearly, and their risks and benefits, so patients come to a decision about their own treatment," he says.
The debate, according to Dr Daly, should now be moving on from doctor-patient relationships to how we improve the cost effectiveness of service delivery.
Recent research suggests Dr Daly's idyll is far from recognised by many patients. Steve McMahon of the Irish Patients Association (IPA) points out that in a 2004 survey, 60 per cent of GPs stated they had insufficient time to tell patients about medicines they were prescribing. And last month, the largest ever survey of Irish hospital patients found, among other things, communication between healthcare specialists and patients seriously lacking.
What Pierson is talking about is more than explanation or consultation. It is real patient involvement at every level of health care, in hospitals, in treatment planning, perhaps also in budget allocations.
This simple idea is both lunatic and common sense. Lunatic because it is extreme by our standards, common sense because why should anybody but patients, the main stakeholder, be in charge of healthcare?
Pierson says when patients get involved in decision-making, the consultant, doctor or nurse is relieved of a big burden. "Most doctors walk the corridors of their hospitals with the fear that this could be the day when they make that one error that costs a patient, this could be the day I do harm. It's a terrible burden. But do you know what? When doctors let go of all their power they find themselves less burdened by that fear."
But Steve McMahon is not sure that even patient consultation is anything like imminent.
"There are patient forums at a number of hospitals now," says McMahon. "But we're only just beginning to find our feet and take root. The big challenge lies with patients in specific disease groups like diabetes who have so much experience or in MRSA where patients have different experiences and needs.
"Listening to patients' experiences creates an opportunity to improve delivery. It doesn't need to cost money."
A promise from the Department of Health and Children to appoint a majority of lay members on the Irish Medical Council and McMahon's own participation in the clinical indemnity scheme are steps forward, but are they in the right direction?
McMahon acknowledges there are many fronts on which patient-centred care could progress, where the barrier is often something as simple, but threatening, as information.
We don't know, for example, enough about GP prescribing patterns in Ireland, so it is difficult for us patients to judge an important and straightforward issue such as consistent and appropriate medication across the country.
Patient consent to treatment in Ireland is also inappropriately framed, says the IPA. "The patient is signing a major contract [ when submitting to treatment]," says McMahon.
"The stakes are very high. But consent is treated more like a legal waiver when, for the patient, it means much more than that."
Also on the IPA list of desires for 2006 is progress on the disclosure of medical errors, an area where, if hospitals and consultants came clean, the IPA believes, would lead to a decline in litigation.
Still, the sense that these are important but marginal improvements is difficult to shake off if the ambition level is set as high as it is in Whatcom County.
To put patients at the centre of the healthcare system, they need information, and not only about prescribing habits. The medical profession over the past 30 years has resisted many new disease definitions that later turned out to be significant.
Irritable bowel syndrome and Candida infection were thought not to exist when they were first discussed, but the medical profession now concedes that they are real problems.
Who decides what is a real illness and what is the best way to treat it? Patient-centred care is currently an ambiguous term meaning different things in California and Dublin. Do we take it to mean adequate consultation? Or is patient-driven decision- making the way forward for Ireland?