Jeff Aronson, Honorary Consultant Physician and Clinical Pharmacologist
Some ideas seem so obviously right that they appear to deny the possibility of harmful or counterproductive consequences. But that is why such consequences, when they occur, are unanticipated, as the sociologist of science Roberrt K Merton called them, or unintended, as they are now more commonly called. One such idea is patient-centred care.
The US Institute of Medicine has defined patient-centered care as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” In the UK, general practitioners, who provide continuity of care to individual patients, are widely assumed to be pivotal in providing patient-centred care, defined by the Royal College of General Practitioners as “care that is holistic, empowering and that tailors support according to the individual’s priorities and needs.”
As the idea of patient-centred care spreads, so does the number of relevant publications. Searching for “patient-centred” in Pubmed, I retrieved 2930 hits, including nine systematic reviews (Figure 1). The first few papers, the earliest dating from 1963, mostly dealt with patient-centred teaching; the first paper to use the term “patient-centred medicine” was published in German in 1971. Up to the 1990s no more than a handful of papers appeared each year, sometimes none. However, since then interest has burgeoned. I found a similar number of papers, 3158, in which the related phrase “shared decision making” was used; the pattern has changed in the same way with time (Figure).
Figure The numbers of Pubmed hits on entering the terms “patient-centred” (blue) and “shared decision making” (red) (1963–2014)
Of course the patient’s needs, values, priorities, and preferences should be a major focus of attention. But the focus is not at a notional centre. The idea that health care has a centre implies that it also has a periphery, always looking inwards, concentrating solely on the centre. Health care isn’t like that at all. It’s a complex network, each component of which needs to be attended to if the other components are to function and benefit.
Problems arising from the centre focused model
Here are five examples of problems that arise from a centripetal model.
The first principle in the list of duties that the General Medical Council imposes on UK doctors is “Make the care of your patient your first concern”, an excellent precept, like patient-centred care. But it isn’t always so straightforward. What do you do if a sexually active 14 year old girl asks for an oral contraceptive? The age of consent is 16. Her 18-year-old boyfriend recently consulted you about a possible sexually transmitted disease. Her parents have strict ethical principles about sex and contraception. If you give her the pill her boyfriend will continue to act illegally and may be arrested; she may develop a sexually transmitted disease; her parents will be distressed, and friction will arise in the family, with other health and non-health related outcomes. If you don’t give her the pill she will probably continue her behaviour and risk pregnancy or obtain the pill from an unreliable and possibly dangerous source. You counsel her about the legal position, the danger to her boyfriend, the duty she owes her parents. But she insists—refuse, and she will buy the pill through an online pharmacy, no prescription required, quality not assured. To which of your patients do you owe a duty of care? To her? Her boyfriend? Her parents? If to all of them, does one duty override another? If she is Gillick competent (capable, although under 16, of understanding the nature of the treatment and of consenting to it without parental knowledge or permission) you will give her the pill, but ethical and medical problems remain.
Patient-centred care is also used as an argument against restricting prescribing to medications that the National Institute of Health and Care Excellence (NICE) in England, and the corresponding organizations in Wales and Scotland, judge to be cost-effective. Prescribe only those, some argue, and you neglect your duty to patients who might benefit from other therapies. But one’s duty of care extends to all patients in a collaborative system. Prescribe a medication costing £60K per quality adjusted life year (QALY) and you will deprive three patients of effective medications costing £20K per QALY. If you demand access to cost-ineffective medications, consider which other patients you thereby deprive of cost-effective ones, as I have discussed in more detail elsewhere. This is, to be sure, a utilitarian approach, which some find unacceptable, but when resources are limited decisions on expenditure cannot be made in vacuo on individual cases, in isolation from others.
Utilitarian decisions made by pharmaceutical companies and medicines regulatory agencies, such as the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK, may remove the prescriber’s ability to make patient-centred choices. For example, the voluntary withdrawal from the market of rofecoxib–Vioxx by its manufacturer in 2004 deprived patients of benefits that they were enjoying without harmful effects, which they may in any case have been willing to risk, in order that others would not run the risk of serious adverse reactions to which they were susceptible. Patient-centred care cannot be achieved in a system that uses population data on which to base decisions of this sort when definitive susceptibility factors are not known.
Prescribing of antimicrobial drugs is currently under scrutiny because of bacterial resistance. If you take a purely patient-centred approach you will tend to overuse antibiotics and thus encourage the emergence of resistant bacteria. And pharmaceutical companies that take the company-centred approach and refuse to invest in the development of novel antimicrobial drugs, an attitude that I have heard one of their representatives publicly espouse, will be abrogating their societal responsibilities. They may claim that they owe a duty to their shareholders, a reasonable stance. But they could ask their shareholders for permission to commit funds to such investment, on the understanding that share values and dividends might fall as a result, and remembering that pharmaceutical companies are good at finding ways of avoiding such outcomes and maximizing profits, as illustrated by the case of orphan drugs.
Finally, not everyone wants care to be patient-centred. Consider elderly patients who do not want to be a burden on their family, and therefore receive less satisfactory care than they should. Some go to centres like Dignitas, for complex and culturally determined reasons. One cannot simultaneously satisfy both their medical needs and their preferences and values, nor those of their families.
Everybody in the network of health care is important. It is a mistake to believe that degrees of importance can be compared and that one element can be regarded as more or less important than another, and particularly that one element is at the centre. Each individual or group of individuals, each process even, is important in a different way. To attend properly to the welfare of patients, families, and carers we must be mindful of regulatory and other processes and how health professionals fulfil their duties, which may conflict and adversely affect other people, while striving at the same time to ensure that the steps we take to safeguard those other parts of the health care system do not vitiate the quality of care that we strive to deliver to the patient. Such are the tensions in the system, that, try as we may, we may not always succeed, and some patients may be disappointed. However, we will generally do best for the population as a whole by paying attention to the whole network, not simply to one element of it. When antimicrobial drug resistance is at issue, for example, the network may extend not merely to our own country, but throughout the world.
Shared decision making is an idea that is allied to the idea of patient-centred care. It is usually assumed to involve only the doctor and patient, although it can extend beyond. However, the idea of collaborative care is clearer, since it makes it explicit that shared decision making should involve others too.
A philosophical approach
The utilitarian argument is not the only philosophical stance that informs this discussion. The concept of collaborative care is supported by recent work by the Yale philosopher Stephen Darwall and the principle that he calls the second person standpoint, “the perspective you and I take up when we make and acknowledge claims on one another’s conduct and will”. Darwall starts by asking why we should avoid doing moral wrong, and observes that previous attempts to answer this have relied on ad personam arguments. However, moral obligation is a two-way street, in which we make claims and demands of each other. Rights imply reciprocal duties, and respect for each other implies reciprocal morality. In relation to patient care this is not merely a second person standpoint but a multiperson standpoint. Our moral obligations extend beyond our patients to their families and carers and the wider world beyond. And our patients’ obligations extend there as well.
Conclusions and defining “collaborative care”
The term “patient-centred care” distorts an idea with excellent underlying precepts, by giving the false impression that everything else is peripheral. This criticism should not be interpreted as encouraging decentralization, but as encouraging collaboration.
The idea of collaborative care provides an explanatory model that resolves some of the problems posed by the patient-centred model.
If your model is patient-centred, you will give the 14 year old girl the pill. However, the collaborative model suggests another possible line of action—joint discussion of the problem with the girl, her boyfriend, and her parents. If that were possible, an alternative solution might be achieved. Note that the model suggests the possibility of this alternative, not that it would necessarily lead to such a solution in all cases. However, it does at least imply a possible solution.
Collaborative care also sheds light on the utilitarian problems of cost-effectiveness and medicines regulation. It recognizes that the needs of any one patient must be considered in the context of the needs of others. Public understanding of these problems would be enhanced by the acceptance of a collaborative interpretation rather than a patient-centred one. For example, the patient-centred model has led to a view that benefits at the end of life deserve to be more highly valued than benefits at other times, a policy whose implementation has been estimated to have resulted in substantial QALY losses and budgetary pressures in UK healthcare; the collaborative model would instead have suggested the use of quality of life expectancy (QALE) as a criterion, every individual being entitled to a “fair innings”, in which the total lifetime QALYs are the touchstone, not the time of life.
Taking a lead from the definitions cited above, I define this alternative idea, collaborative care, as “provision of care that is, as far as circumstances allow, respectful of and responsive to individual patient needs, values, priorities, and preferences, striving to maximize the patient’s well-being, without simultaneously compromising the needs, values, priorities, and preferences of others, achieved by collaboration among all those involved.”
This is an extended version of a paper that was first published in the BMJ 2016; 353: i2926