A blog from the Centre for Research Ethics & Bioethics (CRB)

Month: September 2016

More biobank perspectives

If you did not get your fill during the Europe biobank week in Vienna, we give you more biobank related news in the latest issue of Biobank Perspectives, our newsletter on current issues in biobank ethics and law.

This time, Moa Kindström Dahlin describes what BBMRI-ERIC’s new federated Helpdesk for ELSI-issues can offer. We also invite you discuss public-private partnerships in research at a workshop in Uppsala on 7-8 November.

The legislative process on data protection in the EU might be over for now but there is still activity in government offices. Anna-Sara Lind gives you her view on the consequences for Sweden. We are also happy to announce that the guidelines for informed consent in collaborative rare disease research have received the IRDiRC Recognized Resources label.

You can read the newsletter on our website, or download a pdf version.

Josepine Fernow & Anna-Sara Lind

This post in Swedish

We recommend readings - the Ethics Blog

 

 

bbmri.se

Physicians’ experiences of do-not-resuscitate orders

Pär SegerdahlCritically ill patients sometimes have such a poor prognosis that cardiopulmonary resuscitation for cardiac arrest (CPR) would not help. They are so weak that they would not survive the treatment. If they survive, they do so with even poorer quality of life. The physician can then write a so-called DNR decision, which means that CPR should not be performed.

Mona Pettersson, PhD student at CRB, writes her thesis on these decisions. I have previously written about her first study, in which she interviewed nurses about their experiences of DNR decisions at Swedish hematology and oncology departments.

This summer the Journal of Palliative Care and Medicine published the second study, in which physicians were interviewed about their experiences of these decisions.

In the interview material, Mona Pettersson discerns three roles that physicians perceive they have. They act as decision maker, as patient advocate and mediator for relatives, and as team member. Physicians describe their experiences of these roles, such as the importance of making clear to relatives that it is the physician who makes the decision – so that relatives don’t risk feeling guilty.

The interviews with physicians also contain descriptions of ethical difficulties associated with DNR decisions. Although the physicians emphasize that the decision is made on medical grounds, they also describe ethical challenges and trade-offs. The decisions seem to be especially difficult in hematology wards, where patients can get intensive treatment for a long time, and where even the treatment makes them ill, but almost up to the last moment can be regarded as treatable. Here decisions are made quickly and at a late stage. Physicians’ experiences of the decision not to resuscitate vary from experiencing that they make themselves God, to experiencing it as just one medical decision among others.

In her conclusion, Mona Pettersson emphasizes that the results indicate how DNR decisions are made not only on medical grounds (such as prognosis and prospect of surviving cardiopulmonary resuscitation). They are made also with reference also to ethical values such as autonomy and quality of life after resuscitation.

In her future research, Mona Petterson will examine the ethical skills needed in DNR decisions and how they can be learned and developed.

Pär Segerdahl

Pettersson, M. Hedström, M. and Höglund, A. Physicians’ experiences of do-not-resuscitate (DNR) orders in hematology and oncology care – a qualitative study. Journal of Palliative Care and Medicine. 2016. DOI: 10.4172 / 2165-7386.1000275

This post in Swedish

We have a clinical perspective : www.ethicsblog.crb.uu.se