Take sustainability serious in healthcare to avoid harming future patients!

 

In a brand new blog post at the BMJ Journal of Medical Ethics blog, me, Davide Fumagalli and Erik Malmqvist write about a severe ethical challenge for healthcare systems that arises due to structural deficiencies in established systems for healthcare resource allocation: 

 Most countries with publicly funded healthcare systems have ethically informed priority setting schemes to decide how to allocate scarce resources. Established principles in such schemes recognise patients’ need of care, the effects of interventions, and background requirements of equal consideration and cost-effectiveness. However, the typical use of such schemes is alarmingly short-sighted, systematically allowing the future resource base of healthcare to be undermined. In short: our way of helping current patients is systematically exposing future patients to serious harm and risk.

As a remedy, we propose that a sustainability principle is added to estableshed ethical framworks that govern this central aspect of health policy. Read more about the challenge, as well as our proposal over at the JME blog!

 

New article online: Conscientious Refusal in Healthcare: The Swedish Solution

Indeed, as flagged before, I have a new article published online in the Journal of Medical Ethics on the topic of the Sweden's longstanding policy on conscientious objection by health professionals. I briefly describe the policy and its background and chart some recent challenges to it.

The published article, which is to be included in a coming special issue on conscientious objection, is here.

Preprints for free reading and download those of you who lack institutional access to the JME are here and here.

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Consensus statement on conscientious objection in healthcare

  

  

Just a very brief pointer to this post at the Oxford Practical Ethics blog, showcasing a consensus statement on how states and health systems should handle the phenomenon of healthcare staff conscientiously objecting to practices included in medical practice that comes out of the symposium on this very topic that I related in a recent post.

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Conscientious refusal / objection in health care: new article draft online, and an upcoming symposium

A while back, I made a post with a number of critical remarks on the idea of a legal right of health care professionals to so-called conscientious refusal/objection. That is the idea that such professionals should enjoy a guaranteed exemption from the standard labour law rule, that employee's are obliged to carry out legal instructions of their employer, in cases when they object to the practice they are instructed to carry out, or its legal status. I made the post mainly to get some opinions of particular relevance to current health care policy off my chest, but as it turned out, these ideas have attracted attention within the international community of more systematic research undertaken in this area.

First, the post lead to an invitation to contribute to a coming special issue of the journal Cambridge Quarterly of Health Care Ethics, guest edited by Alberto Giubilini and Julian Savulescu, on the very subject of the ethics of conscientious objection/refusal in health care.

Second, I was invited to contribute to a symposium on the same topic at the Brocher Foundation in Geneva in  June this year, organised once again by Julian, now in collaboration with Sharyn Milnes. My contribution to the symposium is entitled "All or nothing: The legal, ethical and jurisprudential basis of legal rights to conscientious objection of voluntarily employed professionals", and the contribution to the special issue also focus on the combination of ethical and legal reasons in this area.

The work on this article has been undertaken in collaboration with my Danish colleague Morten Ebbe Juul Nielsen, who made contact almost immediately when the blog post was online to suggest that we collaborate, as he had been thinking along the lines of some of the central points of the post already, and had started to scan the relevant literature in more detail. Said and done, the first result of our efforts, the submitted draft manuscript to the mentioned special issue, entitled "The Legal Ethical Backbone of Conscientious Refusal",  can now be viewed online here and here. As this submitted manuscript is undergoing review and will almost certainly be subject to revision, me and Morten are happy to receive any sort of constructive comments.

The NHS "Care.Data" Disgrace Continues: Up to 700 Thousand Patients' Requests to Opt Out Actively Ignored

Remember the Care.Data project in the UK, whereby NHS patients' medical records are supposed to be made available against a handsome fee – often not fully anonymised – to private business interests, which may many times clash with those of patients? If not, read the background story here, here, and here. There are a great many reasons why this project is faulty at its very roots (all explained in the above links), but one of the things that have been a basic rot the whole way is Care.Data's utter disregard for basic medical ethical principles, as for patient basic rights. The apparently deeply dysfunctional  Care.Data organisation Health and Social Care Information Centre (HSCIC) started out by trying to plainly ignore any claim to a right of patients to decline having their medical records sold to business interests or other third parties. When that didn't swing and the HSCIC was forced to supply patients with an opt out opportunity, they did their very, very best to cloak it from patient attention and impede access to what was in reality a simple straightforward exercise of filling out a form. It also surfaced that HSCIC in the meantime obviously didn't give a damn about patient consent and rights, as it was caught with its pants down having prematurely shared patient data with private insurance companies. Simultaneously, unsurprisingly, private pharma industry have been shown to enact heavy pressure, bordering on trying to incite bona fide corruption, on the HSCIC to provide "easy access" to Care.Data. This, apparently, was the last straw for governing bodies, and the Care.Data plan "was shelved" in March 2014. Later the same year the General Practioners' Committee (GPC) voted to demand a complete change to the Care.Data set-up, making it opt-in, in the meantime opting patients out of the scheme by default due to lack of trust in the HSCIC and Care-Data organisation, while  working actively to make patients aware of what Care.Data amounts to and their right to opt out of it, as well as into it. In August 2014 it was revealed that plans to relaunch the scheme have been forced to be abandoned due to the continuous problems to have Care.Data fit even basic standards of law and ethics.

Now, in today's Guardian, it reported (also here, here) that the HSCIC chair Kingsley Manning, in a letter to the House of Commons health select committee this February, has been pressed to admit to MP's that up to 700 000 patient requests to opt out of the Care.Data scheme were never logged, and thereby actively ignored by the Care.Data organisation, thus effecting sharing of their medical records with private business parties against these patients explicitly and lawfully expressed and legally protected wants before the shut down in March 2014.

The GPC lead on Care.Data issues Dr Beth McCarron-Nash is reported to to have characterised the Care.Data organisation: "basically it's a mess". Leader of data protection advocacy Phil Booth summed up the gist of the revelation neatly:

The material fact is, hundreds of thousands of people, last January, February, March, exercised their right to opt out of having their data passed on by the HSCIC, and that has not been respected.

 Meanwhile the HSCIC chair is reported to have ...

... told MPs that it “does not currently have the resources or processes to handle such a significant level of objection” and it also encountered technical issues over logging the preferences. /.../ [and] admitted it “may take some time” to resolve the issue.

As I said, the whole Care.Data setup is simply extremely badly thought up from the start, and its main organisation HSCIC is now admitted by its own head to be both dysfunctional and incompetent to carry out even the most elementary task to have the scheme meet even the most paramount of requirements for ever being fit for operation. In spite of this, it has went along and made Care.Data operative, thus violating hundreds of thousands of patients legal and ethical rights. If there ever were reasons to make the obvious decision to put the Care.Data freak out of its misery for good, it is now plain for all to see. Go back to the drawing-board with basic ethics and law at the forefront and do better. In the meantime, humbly (as I know UK law too bad to be specific), I suggest that leading Care.Data and HSCIC officials should be legally investigated and possibly charged with complicity in what has been revealed. For surely, it has to be in breach of some legal statute in the UK to just hand out people's medical records to third parties in spite of their legally submitted denial of the right to do so (?).

Two Related Articles on the Ethics and Politics of Person Centred Care and Shared Decision Making

Almost back from the summer holiday, I make an easy start by informing about two recent publications of mine, coming out of my involvement in projects at the Gothenburg Centre for Person Centred Care (GPCC). The two articles, one of which appeared at the beginning of summer, and the other in the middle of it, complement each other in analysing and problematising various ethical and political aspects of ideas about so-called person centred care and its related concept of shared decision making in medical and health counselling and decision making. The aspects analysed have implications for policy, economics, research and public health and the articles jointly deepen, problematise and contribute to a sounder theoretical basis of efforts to implement and ensure the quality of person centred care and shared decision making intiatives in health care.

Christian Munthe, Lars Sandman and Daniela Cutas (2011). Person Centred Care and Shared Decision Making: Implications for Ethics, Public Health and Research. Health Care Analysis, vol. 19, DOI: 10.1007/s10728-011-0183-y . Link to journal. Link to post-print at Academia.edu.

Lars Sandman, Bradi B. Granger, Inger Ekman and Christian Munthe (2011). Adherence, Shared Decision-making and Patient Autonomy. Medicine, Health Care and Philosophy, vol. 14, DOI: 10.1007/s11019-011-9336-x. Link to journal. Link to post-print at Academia.edu. Link to post-print at the University of Gothenburg publication database.