The point of patient choice is that it demonstrates that we as doctors treat our patients with dignity and respect, as adults capable and willing to be involved in decisions made about their medical care.
Patient choice has an intrinsic value. By involving patients in their care and not merely caring for them, I am respecting their autonomy. The intrinsic value of patient choice lies not merely in the choice itself, but in the process by which the choice is made. This process involves exploring my patients’ stories, their ideas and values, hopes, fears and expectations, not only about what they want to do, but what they understand of their symptoms and their illness. It is a two-way process. Patients ask me questions, some of them very similar to my own, ‘what am I trying to achieve? What are my hopes, fears and expectations?’ This is how doctors and patients make sense of symptoms, deal with a disease and come up with a shared understanding and make a plan. With some patients (and some doctors) this is easier than others. My patients include many who don’t speak English and others who have cognitive impairments or overwhelming anxiety. Because they have difficulty expressing themselves, finding out what they want is difficult. Up to 50% of my patients’ symptoms defy medical explanation and in these cases it is helpful for doctors to think in terms of ‘medically unexamined stories’ and spend more time searching for clues.
The process of patients and doctors ‘getting to know’ eachother and working through frequently complicated and often uncertain healthcare choices is at the heart of medicine in general and general practice in particular. It depends on a relationship of trust which comes from continuity of care. It is a sophisticated process and it is now a significant part of postgraduate training for GPs. In the last 30 years the training of doctors has improved significantly, with increasing emphasis on patient autonomy as an ethical principle and communication skills as an essential clinical skill. At the same time the amount of information given and available to patients has increased and as a result, patients and doctors, now more than ever are co-producers of care.
When I fractured my scaphoid last year, the orthopedic surgeon recommended surgery, but I opted to wait and see. What mattered to me was that the surgeon respected my opinion even though we disagreed. Patient choice is not about making the best medical or surgical decision, but about respecting the patient’s wishes. Fortunately my fracture healed. But just because patients want to be listened to it doesn’t follow that they always want to make the final decision, many want the doctor to tell them what to do. (see this excellent article from the NY Times about doctors making decisions for their patients) There is a risk that patient choice, not properly understood as a process but as a goal leads us to abandon patients when they need us most.
Choice about where patients are treated has always been part of the NHS. Twenty years ago a GP could refer a patient to any NHS hospital. The reason this is no longer the case is that in the last 20 years an internal market has been introduced with expensive administrative barriers in the way. Attempts to extend patient choice within this system are hugely complicated and expensive. It is one of the main reasons that administration costs in the NHS have risen from approximately 5% to 14% of the budget. The absurdity of the purchaser-provider split that underpins this is explained in another blog post.
Patient choice is written through the NHS reforms like a stick of Brighton Rock, but it is not the patient choice I have described above. Proponents of NHS reform talk about patients choosing where they will get their care rather than why those decisions are important or how they are made. The NHS reforms are built upon the naive theory that patient choice will drive up quality because patients will choose the best quality healthcare providers, forcing lower quality providers to improve their care or go bust through lack of business.
There are several practical problems with this theory, best summarised in a blog by Ian Greener, What would the NHS have to look like for competition to work?
More profoundly, if my patient chooses to have her chemotherapy close to where her children live so that they can help look after her, she has every right to expect the same standards of care in Southend that she gets in Hackney, because she is still being cared for by the NHS. She does not, and should not expect that her choice might lead to substandard care. The responsibility for quality, ultimately rests with the Secretary of State, which is why the duty to provide and secure NHS services must remain there and not be delegated to less accountable bodies.
But there is an even more profound objection. Patient choice, understood in the terms of NHS reform does not have an intrinsic value, it has a ‘utility, or instrumental value’. Instead of being integral to patient dignity and autonomy, choice is being used as a tool for quality improvement and cost containment. The philosopher Emmanuel Kant defined human dignity as the intrinsic worth of a person. Respect for dignity means that one should “Act in such a way that you treat humanity, whether in your own person or in the person of any other, always at the same time as an end and never merely as a means to an end”.
This report from the NHS Competition and Cooperation Panel states,
The over-arching theme was the belief that choice and information were the key drivers of competition and innovation in healthcare markets, improving patient outcomes and efficiency in patient care.
The Secretary of State, Andrew Lansley said,
Of course, patient choice implies competition…there are areas where there is already strong demand for more choice – such as community services. This is where we will begin to introduce any qualified provider
The Kings Fund produced a report last year, Choosing a high-quality hospital, the role of nudges, score-card design and information. It explored tools to make sure patients chose the best quality hospital.
The decisions patients ultimately make about their care can have profound consequences, and may involve personal factors that have nothing to do with the actual or percieved quality of care.They must be free to make choices that may go against medical advice. Furthermore most of their choices are about factors other than hospital quailty; convenience, past experience, personal values and the recommendation of friends or professionals are more important for most patients than objective assessments or league tables. For these reasons, patient choice is a poor proxy for quality and an unsuitable tool for driving change.
Patient choices are integral to dignity and respect and are at the heart of medical ethical principles and the doctor-patient relationship. This is why doctors are so sensitive to criticism that we do not care about patient choice. The reason so many of us who care for patients every day object so strongly to the way that patient choice is framed in the NHS reforms, is that patients and their choices are not being treated as ends in themselves, but merely as means to an end; they are to become subservient to the goals of market based competitive healthcare.
Patient choice and narrative ethics. John Launer. Choice isn’t what you think it is.
Patient Choice: Can Consumers Direct Healthcare? Excellent, detailed (73page) report
Government claim that patient choice saves lives is based on flawed research. Allyson Pollock and others. Link to original Lancet article.
The choices patients don’t make
Patients may vary in their desire for involvement in decision making in consultations. Doctors need the skills, knowledge of their patients, and the time to determine on which occasions, with which illnesses, and at which level their patients wish to be involved in decision making. Do patients wish to be involved in decision making in the consultation? A cross sectional survey with video vignettes. BMJ
The Department of Health Consultation on patient choice
Patient choice: How to haggle with your doctor, lessons from America
Responses to ‘your views: Choice & competition’ May 27 See: 6.41 etc http://healthandcare.dh.gov.uk/your-views-choice-and-competition/
Some ‘choice’ Andrew Lansley quotes: http://www.bbc.co.uk/news/health-11566123
Shared Mind: Communication, Decision making and autonomy in serious illness Brilliant article exploring the issues I have discussed in more detail.
Having more choices, on the surface, appears to be a positive development; however it hides an underlying problem: faced with too many choices, consumers have trouble making optimal choices, and thus as a result can be indecisive, unhappy, and even refrain from making the choice. Overchoice.
The Tyranny of choice, Salecl: “The idea of choosing who we want to be and the imperative to ‘become yourself’ have begun to work against us, making us more anxious and more acquisitive rather than giving us more freedom”
In a society geared towards the individual, and dominated by consumerism and celebrity, we are constantly encouraged to choose a better life for ourselves. The weight of each choice and the super-abundance of options can cause crippling anxiety and we defer to others to make the right choices for us. When we do get what we want, fulfilment is swiftly replaced by dissatisfaction and desire for a better option.
Barry schwartz “…what seems to contribute most to happiness binds us rather than liberates us”
Sheena Lyengar Ted Talk
How do patients choose physicians?
The impact of patient choice of provider on equity
Patient choice and the organisation and delivery of health services
Patient choice and equity in the British National Health Service
The claim for patient choice and equity
How patient choice can work, Ian Greener
Hposital outcome data is too flawed for patients to use it to make choices. Academic Health Economists blog.
Do patients want a choice and does it work?
Equitable Choices for Health IPPR report
Patient choice how patients choose and providers respond, Kings Fund
2007 NIHR/SDO Research document http://www.sdo.nihr.ac.uk/files/adhoc/80-research-summary.pdf evidence from the USA suggests that vulnerable patients, including those from black and other minority ethnic groups are increasingly excluded as a result of extending choice (Klassen, 2002). Increased inequity is a risk unless the choice policy includes a means of targeting disadvantaged groups, including older people, those who are less educated, those on low incomes and ethnic minority groups, to prevent such exclusion (Health Link, 2004; Which?, 2005).
Great post. My concern remains around people (such as those whom I work with regularly) who lack the capacity to make decisions about their care and who don’t have advocates/friends/family. In the social care sector, these are the people who have been left with second rate care while those who can choose to have personal budgets for care can pick the higher quality and more individualised services. I’m all for choice but there have to be means to build in advocacy (non-directed) and support for some of the groups of people that can otherwise be left behind.
You are so right as ever, pity the poor souls who won’t have the wherewithal to make a choice of provider, are they going to recieve substandard care, why should they? These reforms are poisonous particularly to the more vulnerable in society. The introduction of the internal market has taken so much resource from the clinical area, look at what it has achieved for the standard of nursing care in hospitals when “the market” is the driving force-I despair.
As a patient who has just turned ‘over 60’, I suddenly find my choice has been cut down – and instead of ‘I recommend xxxxxx’, it is now down to ‘I suggest we wait and see’. Recently I had to kidnap my 90 year old mother from a ward at the local Foundation Hospital; she had fractured her hip; no-one would give me a time or even date for her operation, and I knew stats. said she had to have this within 48 hours. We had a choice because she had private insurance – but I don’t call that ‘Patient Choice’.
I’m not sure if you have seen it but I think you might be interested in this paper by Epstein and Street (2011) http://www.annfammed.org/cgi/content/abstract/9/5/454
In it they suggest that we move away from seeing decision making as a transactional process to an interactional one.
Thanks for this Anne Marie, this is exactly what I was getting at. I wrote my MA dissertation on relational autonomy (though didn’t call it that) and it’s refreshing to see it bought up again. It’s inspiring to get deeper into General Practice, Jonathon
Oh good:) Epstein visitied Cardiff earlier this year. I was very impressed with his presentation and wanted to tell the world then! But he said it was going to be published so I’ve been checking periodically every now and then.
The worrying thing is that many people will want metrics before they believe that this is true. We just have to get more and more people to read accounts just your blog and this paper and hope that it clicks with them.
Thanks for this. A really lucid and passionate explanation of how the pro-market-competition has hijacked the term, ‘choice’, and the purchaser-provider split model has distorted it. I think there was *some* merit in Labour’s argument that making choice (of ‘provider’/hospital) an explicit commitment for all referrals, addressed some inequities (i.e. that those ‘in the know’ were best placed to ask for referral to specific consultant or team). Of course though, that was not really the central reason for promoting ‘choice’; and as you rightly point out, choice of hospital is really a side-issue in the whole picture of patient involvement in choices about their treatment. Those who want to engineer ever more competition in to the system have somewhat won the discursive high ground by entangling choice and quality with competition – thanks for your contribution to the resistance. Kate.
Patient choice so much depends on the imagination and energy of the Doctor, the patient and their interaction. The fear is that the current reforms will reduce patients’ real choice in practice, that the word choice is a hideous misnomer and that patients will actually have to fight for decent choice, perhaps because of there being in theory a blank sheet as to choice. It must also be remembered that ill people do not have necessarily have much energy. Honesty is needed all round.
Great blog Jonathon and thanks for the link Anne Marie. If you are interested here’s a link to view of conventional v systems thinking management paradigms http://www.thesystemsthinkingreview.co.uk/index.php?pg=3. It is like the transactional v interactional table in your link but suggests the reason we don’t have “Table 1” relationships is because we judge “goodness” in terms of abstract notions like alos, DC rates, utilisation, new to f/up ratios, choice etc. Because we think about the problems we have and how to solve them in the wrong way we break our ability to create relationships and solve peoples’ problems by understanding them as people. We then build lots of service shaped rather than person shaped solutions. So the interactional relationships occur in spite, not because of the system.
20 years ago I was part of the management team responsible for NHS services in the Outer Hebrides. North of the central belt, much of the Scottish mainland also has low population density, minimal public transport and minor roads. The notion of “choice” in hospitals GP services or primary schools is surreal. We are fortunate that even under the last Conservative government, Scottish office ministers moderated doctrinaire policies with pragmatism and commonsense. After devolution, Labour had three of their best people in charge of Health. The one who was merely good was an ex-NHS consultant, but now we have the SNP’s deputy leader, the workaholic Nicola Sturgeon who is the most committed to the principles of the NHS of any Health minister known to me in either system since Barbara Castle.
There are many in the SNP who would like to see her the leader of the party and there are Labour party members who would like to see her lead their party too.
Not me. I take 10 pills a day.
Let’s get this evidence on patient choice and quality of care nailed down once and for all.
Patient choice is definitely NOT related to quality of care.
The NHS and the previous government commissioned research on this topic from the University of Manchester and the December 2005 report will provide you with all the unpalatable answers:
Click to access 80-final-report.pdf
In Feb 2007, a research summary was published of this report under the title ” Can Choice For All Improve Health for All”?
Click to access 80-research-summary.pdf
When the research summary was first published by the SDO, it had the NHS logo on the summary, but two days later, the NHS logo on the summary report disappeared for good (and has never reapppeared again). It is my guess that the previous government was mortified by the research findings which went contrary to the mantra they were spreading to all and sundry at that time, and therefore the NHS hurriedly (having made a faux pax in the first place by endorsing the research findings) and completely dissociated itself from the research which it had commissioned in the first place.
Thanks for taking the time to articulate this so well, I trust even at this stage that leaders will take heed – where offering ‘choice’ is properly observed the care giver will always be as equally liberated as the patient.