by Cristina Fernandez-Garcia
Discussions on the prioritisation of healthcare are marred by disagreements on what should count as a fair distribution of resources. Ethical discourse is sometimes used in an attempt to solve disputes on the use of these scarce resources. However, principles of justice often conflict with each other when used in procedural (1) or deliberative approaches to prioritisation. Giving priority to the worst off (2) could clash with the sufficientarian ethos, which advocates enough resources for everyone, (3) and luck egalitarian concerns designed to counteract the distributive effects of luck (4), whilst utilitarian approaches (5), focusing on the maximising overall wellbeing, can lead to the exclusion of those in most need of medical care. It has been argued that one way to break the deadlock caused by these conflicting views on justice is to involve the public and introduce the values and opinions of those directly affected by rationing into the decision making process.
Involving the public in policy making based on the principle of deliberative democracy is nothing new. Citizens’ juries have been used as models for public involvement in the NHS since the 1990s, experiencing a resurgence in 2007 when Gordon Brown announced that the Government would set up several juries designed to involve the public on policies on crime, immigration, education health and transport. More than 10 years later we find some citizens’ juries are still emerging and are involved in health policy issues such as debating the extent to which patients should control access to their medical records or formulating recommendations designed to inform the commissioning of future health services. NICE has also sought to incorporate public perspectives into their guidance in the form of Citizens’ Councils. Their role is to provide a public account of overarching moral and ethical issues which form a set of “social value judgements” to help develop guidance. Although, it is unclear how their input translates into this guidance, if at all, NICE is supposed to take account of their recommendations.
This blog aims to highlight three recent papers which discuss public involvement in healthcare decisions. The three papers chosen are all linked to the use of a public deliberation exercise called Choosing Health Plans All Together (CHAT), yet each paper approaches this exercise from a different viewpoint to provide a rounded discussion of public involvement in healthcare priority setting.
Swiss-CHAT: Citizens discuss priorities for Swiss health insurance coverage
International Journal of Health Policy and Management. Published 6th March 2018
The first paper I’ve chosen for my first ever blog presents a novel way to involve the public in healthcare prioritisation decisions. The authors describe a study of public deliberation using the Choosing Health Plans All Together (CHAT) simulation exercise. CHAT is a decision tool that allows the public to make decisions on trade-offs between different areas of healthcare and setting acceptable limits to their provision with the aim to inform the design of a health insurance package acceptable to all parties involved.
The study is based in Switzerland where the healthcare system, substantially different from the NHS in the UK, includes a mandate for individuals to purchase health insurance with different levels of co-payments and premiums available. 175 participants were recruited and stratified by gender, age, socioeconomic level, language and whether they lived in an urban or rural area. This sample was supposed to be representative of the Swiss population. Participants were then engaged in a 3-hour long prioritisation exercise where they are asked to decide the level of coverage they would choose for 17 pre-specified health benefits: dental, vision, quality of life, mental health, prevention, chronic disease, long-term care, prevention, rehabilitation, severe injury or illness care, end of life care, out of pocket costs, access to specialists, time with doctor, episodic care, sexual and reproductive care and finally, subsidies to lower income families. The exercise consisted of four distinct rounds where participants deliberated on the areas to be included at a basic and higher level of coverage. The first stage saw the individual choosing a healthcare plan for themselves. In the second round discussions to decide on a collective healthcare benefits plan continued in groups of three. The next stage involved all participants coming together to reach a consensus on a collective insurance plan. The fourth stage completed the exercise with the participants going back to individual deliberation and choosing an insurance plan by themselves based on what they have learned through the process.
The results of the deliberation process were presented in a quantitative format using the current Swiss healthcare coverage as a baseline. With that in mind, the majority of participants supported a healthcare system that provided greater coverage for dental care, longer term care provision and mental health compared to the current system. Rationing of invasive life-sustaining treatments in dying patients was supported by 80% as was allowing longer waiting times for non-urgent episodic care.
The most interesting findings, in my opinion, came from the participants’ reported attitudes. Whilst participants favoured cost effectiveness criteria to prioritise interventions, almost a third of participants were concerned about rationing resulting in care no longer being available to everyone. Their own personal needs seemed to be a lesser concern with only 5% fearing their “own exclusion from the health system” as a result of pressures on the health system. Under half of participants, however, felt that health coverage should be the same for everyone, betraying how egalitarian concerns might impose limits in the use of cost effectiveness criteria in healthcare allocation.
Health Expectations. An International Journal of Public Participation in Health Care and Health Policy. Published 14th April 2018
Whilst the first paper I chose for this blog provided quantitative data on the deliberations of the public using CHAT, this second paper provides the qualitative outcomes arising from that deliberative process. Through the qualitative component, the authors aimed to understand the deliberative process itself and the reasons put forward by participants for their choice of health insurance coverage.
The verbatim quotes provided a wealth of rich evidence supporting the quantitative results briefly outlined above. As the title of the paper reveals, issues of solidarity and cost effectiveness permeate the participants’ deliberations and underpin some of the arguments made for the coverage decisions agreed upon during the CHAT exercise. Cost effectiveness weighed heavily in the justification for either higher or lower levels of cover. As mentioned in the quantitative discussion, the cost-effectiveness discourse, however was also accompanied by concerns about equity with participants wanting to ensure that those in need were not excluded from access to healthcare.
Personal responsibility for your own health did not rank as an important factor in health insurance coverage positions. Furthermore, discussions about responsibility were framed in terms of solidarity rather than blame or desert. Taking responsibility for one’s wellbeing was thought of as a contribution towards diminishing the burden on the health service and therefore ensuring that a basic health coverage was always available for those more vulnerable. Though doing all we can for our own wellbeing, we make sure there are sufficient healthcare resources for those that most need them. This counters the neoliberal discourse that it is often heard in current political justifications for cuts. Despite attempts to polarize public opinion and blame individuals for their lot in life, solidarity, at least in Switzerland, seems to be alive and well.
Healthcare priority-setting: Chat-Ting is not enough
International Journal of Health Policy and Management Published 28th July 2018
Leonard Fleck provides a critique of the CHAT approach used by the Swiss team. His main concern is that the usefulness of CHAT is limited. Solving real world healthcare rationing problems is too complex and requires a process of sustained public deliberation that extends beyond 3-hour focus groups.
This complexity is rooted in three main arguments:
First, the use of broad abstract principles within the CHAT tool misses out on the nuances associated with choosing between very particular and specific healthcare interventions. The author exemplifies this challenge using targeted cancer therapies and the controversial decision reached by NICE to exclude certain therapies on grounds of cost effectiveness but later funded by a specifically created Cancer Drugs Fund1.
Second, the co-existence of a broad diversity of reasonable values leads to sometimes irreconcilable disagreement about what should be prioritised in healthcare terms. This is referred to by the author as the “liberalism problem” and he believes that CHAT is not able to address the social conflict arising from the existing moral diversity. This, he believes, is particularly relevant in the fields of assisted dying and emerging genetic technologies. Strong religious beliefs in a pluralistic society may mean that the “mutual respect” advocated by those participating in the CHAT exercise is not enough to resolve fundamental questions of life, death and what it means to be human for all individuals in society.
The third and final objection posed by the author is the disagreement over which theory of justice ultimately determines whether a decision is fair. Decisions of prioritisation are complex and the justice principle invoked in whether a specific technology should be rationed is very much context dependent. For example, whereas appeals to a libertarian kind of personal responsibility may be used as an argument for rationing treatment to smokers, a prioritarian inspired compassion for the very ill patient may motivate the endorsement of extraordinarily expensive treatment even when the chances of medical success are minimal.
I tend to agree with the author that a 3-hour deliberative process may not yield the answers we need to solve the abundant healthcare prioritisation questions. However, it seems to be a positive step towards establishing whether, as Rawls believed, there is a set of widely held moral initiations that can help inform prioritisation in healthcare.
1 https://www.england.nhs.uk/cancer/cdf/
References
- Daniels N. Accountability for reasonableness: Establishing a fair process for priority setting is easier than agreeing on principles. BMJ: British Medical Journal. 2000;321(7272):1300.
- Rawls J. A theory of justice: Harvard university press; 2009.
- Dorsey D. The basic minimum: A welfarist approach: Cambridge University Press; 2012.
- Dworkin R. Sovereign virtue: The theory and practice of equality: Harvard university press; 2002.
- Mill JS. On Liberty, Utilitarianism, and other essays: Oxford University Press, USA; 2015.