Is it possible to meaningfully involve the public in rationing decisions? Health Policy Today, 21st October 2008

The theme of the BMJ this week is, ‘where are we in the rationing debate?’ and features contributions from US academics and policy makers, English economists and Norwegian doctors.  The real theme is that it is critical to involve the public in rationing decisions and the central question, can it be done?

LESSONS FROM OREGON

It is 20 years since the Oregon Health Plan first attempted to involve citizens in setting priorities.  Vidhya Alakeson, a policy adviser at the Department of Health and Human Services in the US, looks back at the plan in this week's BMJ.

‘The Oregon Health Plan was created in 1989 to expand coverage to some of the 400,000 citizens who at the time had no health insurance’.  In order to find the money to cover these extra people, the state needed to find a way to spend less on existing Medicaid recipients.’  They decided to avoid the traditional approaches to controlling costs – paying providers less or reducing eligibility - and ‘instead adopted for a new, bold approach: it would ration the benefits covered under Medicaid’.

To do this, the state introduced ‘a prioritised list of treatments’ produced by The Oregon Health Services Commission.  The body still exists and ‘by law, its 11 members must include five doctors, a public health nurse, and a social worker.  Its four remaining members can be either consumers or purchasers’.

The plan was initially a big success, but over time problems developed.  The state depended on a mix of state and federal funding, and its application to cut some benefits were refused.  Secondly, the list that was produced did nothing to control the costs of approved treatments, which increased.   Third, in order to make substantial savings Oregon dropped hundreds of ‘condition-treatment pairs’, including treatable cancers and other serious conditions.’

A political scientist from the University of North Carolina believes the intentions behind the plan were good; the mistake was to believe that healthcare costs could be controlled line-by-line.

By 2004, the numbers in the plan dropped significantly as people liost their jobs and employer provided insurance.  With sufficient local revenues to fill the gap, the state was forced to close enrolment in July 2004.

Vidhya Alakeson thinks it interesting that no other state copied the approach.

WHERE PROGRESS HAS BEEN MADE IN DEBATING SOCIAL PRIORITIES FOR HEALTH SPENDING

The reason for the BMJ special issue on rationing is that it is 12 years since the BMJ argued that health systems needed to be explicit about rationing and ran articles about different ways of doing so fairly.  Given the experience of Oregon, has the debate gone backwards?

Susan Dorr Goold and Nancy Baum believe there has been progress in five areas:

1. We are able to remove funding from existing services as well as evaluating new spending priorities

2. Measures of equity have been incorporated into decision making

3. Healthcare professionals are starting to grapple with how to ration ethically and equitably.

4. There has been a turn in focus from reaching consensus on how resources should be shared and onto fair processes for distributing resources

5. Accountability for reasonableness (holding decisions to account) are beginning to be built into new evaluative processes

Rationing is an international issue and at the heart of all health systems and it is perhaps true that the five achievements above are achieved across the world rather than within single systems.  Even where some progress has been made in each domain, achievements are not uniform.  The UK is less good at withdrawing ineffective treatments than the list suggests.

CLINICALLY-LED RATIONING

Ole Frithjof Norheim argues that the way to make progress in the rationing debate is to ensure that doctors lead the process, at a local level, in their daily practice.

Norheim says that ‘clinical priotiry setting remains the cornerstone of any healthcare system and that ‘we, as clinicians, should take the lead and improve our thinking, our methods, and our choices’.  He challenges healthcare professionals to lead the rationing process.

It is a view that is described as “courageous” by the director of the bioethics programme at the University of Michigan Medical School, who writes an editorial on the subject.  She makes the point that ‘doctors, particularly in the United States, are reluctant to take on the role of rationing’ though acknowledges ‘that studies show that doctors can accept that role, that they can ration using clinical criteria (such as severity of illness) and that the public expects doctors to provide leadership in resource allocation policies’.

Norheim says that though resource allocation is complex, the principles in ensuring fair priority setting ‘are quite straightforward.  He says clinicians should know these basic principles and ‘be active in improving priority setting at all levels of the healthcare system’.  ‘To improve priority setting across patient groups, clinical leaders must engage with others and make transparent choices based on two key principles of just resource allocation: ‘maximising average health life expectancy and distributing health fairly across patient groups’.

These principles make Door Goold and Baum a little uncomfortable as it is their view that ‘no allocation of resources, mo matter how just, can ensure an equal distribution of health’.   The new challenge, the say, is to match the economic tools, including programme budgeting and measures of health status with ‘equally sophisticated ways to evaluate to what extent those tools, and which methods of public deliberation, improve the accountability and legitimacy of health spending decisions.’

THE ACCOUNTABILITY OF REASONABLENESS

Norman Daniels and James Sabin, from Harvard University agree that ‘resource allocation decisions in health care are rife with moral disagreements and a fair, deliberative process is necessary to establish the legitimacy and fairness of such decisions’.

The point to the Citizen’s Council that works with NICE ‘to provide input on relevant social values, such as how age may be used as a criterion in setting limits’.  The problem, of course, is that NICE and its Citizen’s Council have disagreed with the latter being overruled, for example, on the principle of whether exceptions should be made in special individual cases.

It is not certain that having such a Council will mean that the public see the resource allocation decisions are fair.  So is a search for a fair process a flawed one?

The authors acknowledge it can be difficult to influence some national institutions, but even where this is the case, ‘local traditions may be more deliberative and open to using the method at institutional level’.   This may be the case, but the approach seems hopeful and aspirational rather than coming up with a way of engaging people .

This view leads some to believe that it is not possible to have a fair process.  Cam Donaldson, professor at Newcastle University, is less enamoured by the idea of involving the public. The worry is that any attempt to design ‘fair processes’ run the risk of finding the wrong answers or avoiding tough choices.  His preferred approach is to use the economic tools of programme budgeting and marginal analysis to allocate scare resources.

LITTLE PROGRESS IN INVOLVING THE PUBLIC WITH DESIGNING RATIONING PROCESSES

There is clearly no agreement about whether the public should or can be involved in efforts to distribute social resources.  Looking across the contributions it seems that the technical and economic models to support priority setting have improved, and are drawing greater consensus, but that the models for public participation are barely developed.  There is not even agreement that public involvement is desirable.  If it is seen as important, does the public legitimise the views of others, make statements that guide the commissioning decisions of others or whether they should be offer explicit spending choices.