New Article on the Ethics, Philosophy and Practice of Person-centred Care and Shared Decision-making

One topic that's been part of my research activities for some years now is the ethical and philosophical implications of movements to transform health care practices towards more of what's often called a "patient-" or "person-centred" perspective, sharing clinical decisions with patients to a larger extent. I've been lucky to publish a few analytical works in this area in collaboration with, e.g., Lars Sandman and Daniela Cutas, which have attracted quite some attention, partly as an outcome of an ongoing research collaboration with the pediatric diabetes centre at the Sahlgrenska University Hospital, involving medicine, psychology, organisation, communication, care and human factors risk research, besides philosophy and ethics. Now I'm happy to announce the first of a number of planned articles coming out of empirical and multi-disciplinary investigations of communicative aspects of adolescent diabetes care undertaken in this project, authored by Anders Herlitz, myself, Marianne Törner and Gun Forsander. This article uses outtakes from a video-study of continuous doctor-patient consultation sessions forming the bulk of adolescent diabetes inpatient care (the rest is self-care performed by the younsters themselves) to question received assumptions in standard notion of what person-centredness and shared decision-making should involve, basing our arguments in received results from behavioural science and moral psychology. Instead, we advocates a new approach for patients who are at risk of suffering from weak decision capacities when performing self-care, while being in need of significant portions of such care. We also argue, that this new model exposes an hitherto ignored ethical tension within the person-centredness and shared decision-making advocacy, which needs to be adressed and managed for care to be defensible.

The article is entitled "The Counselling, Self-care, Adherence Approach to Person-centred Care and Shared Decision-making: Moral Psychology, Executive Autonomy and Ethics in Multi-dimensional Care Decisions", and has been accepted for publication in the journal Health Communication, to appear shortly. Meanwhile, interested parties may sample our final draft after the critical review that lead to acceptance (a so-called postprint), which has been made available here. In the pipeline are at least two more works based on this study, one of which on the role of parents and family in adolescent care, and one on conrete strategies to promote what in the article promoted here is called "robust decision capacity". In the future lingers further yet undecided things, as I am part of a group that has just received a nice bit of funding for continuing working on this topic.

R.I.P. Adrienne Asch – Bioethicist, Philosopher and Disability Ethics Pioneer

Today, I'm reached by the sad news that Adrienne Asch – a pivotal figure in bioethics, particularly known for her important contributions to the understanding of disability-based perspectives on bioethics, not least  regarding prenatal and other sorts of such reproductive genetic testing this world doesn't seem to ever get enough of – passed away this morning after having suffered bad cancer for some time.

Confirmation of this last news is here, and the death notice has been traveling around Twitter and Facebook today, e.g., via my trusted Canadian colleague Udo Schuklenk, originating apparently from the account of the US National Federation of the Blind (where Adrienne was a prominent spokesperson):

Addendum 2013-11-20: the day after, Yeshiva University has now officially posted an in memoriam.

The NFB also provides a link to this recent address that Adrienne gave at their convention this summer. It tells the tale of her way into bioethics and philosophy from human rights activist work, explains why the disability perspective is so important to bioethics, and why bioethics is so important to the disability movement, and ends by some pretty hard to chew food for thought for bioethicists, disabled people as well as anyone. Information about her writings and other accomplishments can be sampled via her webpage at Yeshiva University, where she held three parallel chaired professorships and one directorship. But don't take my word on her qualities as a scholar for it, here's a video piece where you can watch her in action talking on her special topic and judge for yourself:

My own contact with Adrienne came via her work on the disability based criticism of prenatal (PNT) and eventually preimplantation genetic testing (PGD), which still holds up as the most eloquently put, stringently made and thought-through devised version of that important critique, which she nevertheless continued to develop (she had a couple of pieces in the American Journal of Bioethics last year). I had myself been barely sniffing some of what Adrienne herself had the full grip on in my work on PNT and PGD in the 1990's, but when I came to writing my first encyclopedia piece om PGD a few years later, I was lucky and awed to discover it all so much better told by Adrienne and since then, her work has been my main reference on that topic whenever I need to provide one. Many years later, as part of a European Commission sponsored project on access to higher education for disabled people and charged with arranging a workshop on relevant disability-related research, Adrienne's name was the first one to come to my mind as speaker – and to my astonishment and joy she said yes. This was not so long time back, so this is how I remember her, as in the picture above: working! Because that she did and contributed everything I could have ever wished for, including cracking a joke when it was best needed. There were plans made then that we never got around to finishing (or even initiating), but she nevertheless honoured me by referencing my PNT work, and we shared space in this book, which came about thanks to Daniela Cutas, who worked with me in this project and was introduced to Adrienne at that same workshop.

Also, used to getting around as a blind person in New York City, when we asked before she came to that workshop if she needed any special assistance, she declined, albeit finding out that this thing with the cobblestones and the trams of Gothenburg and all made it slightly less manageable than maybe she was used to or had expected. Did she intentionally show anything of that? Never! I sensed then the divide of experience between us that probably made an ocean of difference in our angle of approach into our respective work – as much as we reached conclusions of close proximity. The divide between one who in virtue of physiological constitution has always enjoyed the default upper societal hand and the one who has always encountered a basic tweaking the other way around. In any case, this is my own personal connection to and remembrance of Adrienne; hardworking, insightful, generous, profound, funny and proud.