About the Consortium


The Ethics of Family in Health and Social Care Research Consortium
Despite many attempts to broaden its ethical gaze beyond the patient-centered focus of traditional medical ethics, bioethics remains strongly individualistic. The patient is treated as a self-interested individual unencumbered by personal relationships, and the principle of self-determination is dominant. However, many areas of biomedicine call for a more relational perspective. This international collaborative project on family ethics is about just that.


Goals 

  1. To map the construction of subjects and their identities within the nexus of patient, family and professionals in health care and social services.  
  2. To identify how care responsibilities among individuals within families are negotiated, established and maintained in varied socio-cultural settings and the significance of perceptions of choice, obligation and duty on the value and forms of care produced.  
  3. To evaluate if the actual distributions  of competencies, benefits, burdens and responsibilities between patient, family and professionals in different contexts are reasonable and justifiable.

Background

The dominant perspective in theories, guidelines, and clinical praxis of medical ethics in the Western world has for long time been, and still is, individualistic. The guiding idea is respect for individual autonomy, translated into requirements of informed consent and acknowledgements of the individual patient as the sole and privileged stake holder, e.g., “My patient is my first and final concern in medical decision-making.”  For professional care givers, patient concerns are primary, but the exclusive focus on individual autonomy as construed by liberal moral theory poses almost daily difficulties in different health care and social service situations. It appears to miss a very significant social and material reality, namely that the individuals in question are rarely there in a purely singular/autonomous position. Instead their location within a range of ongoing responsibilities and relationships will inform what care they ‘choose’ and which decisions they make. Often they will want others with whom they are in relationships to participate in the care they seek and decisions they make. These relations and responsibilities can mean that the choices made may appear counter to what is best for them as individuals, but may be what they believe best responds to the broader contexts in which they live. Of particular importance in this relational understanding is family as a complex set of relationships and responsibilities which inform how people come to make decisions about their care and treatment.
Therefore, doctors need to understand how families work and they often need their collaboration. Sometimes, as in home care, family members are expected to take on significant burdens and responsibilities for the care of the patient. Professionals at home visits experience a new dimension of intrusion in a family’s private life, turning the home into a therapeutic zone with new challenges for delivering health care and social service. Many patients are first treated at home by their families, then in hospital, then again at home. At each stage knowledge and competencies are lost. Equally, multiple family members can find involvement in such treatments and therapies as a positive, life-changing experience. However, one danger is that these responsibilities can be a source of tension within families, as different family members can disagree on their value and importance.
It is not that health care professionals are not aware that family contexts play a role; rather the issue is that the moral theories embedded in institutional norms of ethical practice do not reflect what day-to-day actions and choices professionals are making and which norms actually are followed . While not exclusive to treatment of children and end-of-life treatment and decisions, within these 2 overlapping areas it is impossible to think of decisions being made without family contexts playing a role. In practice, professionals often take family opinions into consideration, e.g. in decisions about withdrawal of treatment, but not in a transparent and reflective way. Most doctors can attest to situations when decisions to stop curative treatment have been postponed in order to give families time to adjust to the situation, sometimes even at the cost of the continued suffering of the patient. Siblings have for long been used as bone marrow and solid organ donors, although with no systematic knowledge of how this affects them in the long run and how different family styles affect the communication and decision process. As a result of developments in genetics and genomics, medical data come to be seen more and more as collective data assembled according to genetic ties instead of considered individually.  
In the blending of cultures the individualistic approach of medical and ethical decision-making is at times overlooked, or indeed, looked upon with suspicion and contempt.  Individual patients may be subordinated under family concerns (as when the family is the first to know about a patient’s condition) and family interests may sometimes be considered as significant and even primary. This also means that recognizing the significance of family is not straightforward, as what constitutes family can be varied and not simply derived from notions of the nuclear or biological family. In addition, families can contain within them issues of power inequality and patterns of harm, which means that an individual can take family into account in a way that produces choices clinicians should not simply accept as based in a web of relationships – particularly if those relationships seem problematic. If a wife who has suffered years of physical and emotional abuse chooses a termination because the abusive husband wishes it, what kind of choice is this, what kind of relationship informs it, and what role does the clinician have in responding to that choice?
Despite many attempts to broaden its ethical gaze beyond the patient-centered focus of traditional medical ethics, bioethics remains strongly individualistic. The patient is treated as a self-interested individual unencumbered by personal relationships, and the principle of self-determination is dominant. However, many areas of biomedicine call for a more relational perspective on patient identity and/or perspectives that are sensitive to broader socio-cultural understandings of health and well-being, and quality of life. In particular, we are thinking about moral issues surrounding new developments in the field of home care, telecare, and genomics, as well as longstanding issues at the beginning and end of life.
Questions that will be explored are 
o   How can we  specify and characterize the relationships in families and what responsibilities attach to them in different contexts, such as
§  Responsibilities of parents  towards their children (conceptions of parenthood)
§  Responsibilities of children towards their parents (filial obligations, burden of care)
§  Family as a non-contractual relationship or consensual relationship?
o   Issues of responsibility and competency between family and health care professionals
§  Distributions and disagreements about responsibility to care
§  Location of care across public and private boundaries
§  Medical decision-making and proxy decision-making
o   Who should be informed?
§  Different communication models 
§  Shared decision making model 
§  Negotiated decision making
o   How can medicine affect family relationships and boundaries, and vice-versa
§  New pressures (intergenerational transfers of resources, care burdens, health risk-taking) on families due to life-prolonging means or disease management
§  Novel family structures and choices (same-sex parenting, surrogacy arrangements, sex selection) that are made possible by reproductive technologies
o   How do we respond to patterns of family relationship and responsibility which are identified as harmful to particular individuals, but which may be defended within certain socio-cultural norms?
§  Gendered patterns of caregiving and prioritization of care
§  Religious decisions pertaining to the care of legal minors (e.g. Jehovah’s Witnesses on no-blood surgeries; genital mutilation)

Strategy

Through this research program we will advance parallel work done by academic institutions, health care and social service establishments by recognizing the need for understanding, obtaining data, and engaging in the ethical assessment of individual patients’ entanglement in different relationships. We regard  “family” as a wide concept taking into account different kinds of relationships among individuals and significant others.
The consortium consists of researchers from different countries:


Netherlands

•      Prof. dr Marian Verkerk*

UK
•      Professor Janice McLaughlin*
•      Professor Jackie Leach Scully
•      Professor Erica Haimes
•      Dr Simon Woods

Sweden
•      Professor Christian Munthe, Goteburg*
•      Associate professor Kristin Zeiler, Linköping*
•      Dr Ulrik Kihlbom, Uppsala universitet*

Germany
•      Professor Christoph Rehmann-Sutter, Lubeck
•      Professor Christina Schües, Lubeck*
•      Professor Claudia Wiesemann, Gottingen

Singapore
•      Dr Jacqueline Chin Loon, Centre for Bioethics, Singapore

USA
•      Professor Hilde Lindemann, Philosopohy Department, Michigan University*
•      Professor James Nelson-LIndemann. Philosopohy Department, Michigan University, USA


* Member of the steering committee
The researchers as a group represent a wide variety of social and cultural contexts and together have access to a rich supply of disciplinary approaches as well as research methodologies. All research groups have close collaborations with hospitals and organizations running health care and social services.


Workshops

The Consortium was constituted at a two-day workshop in Groningen April 28-29 2011 with a total of 20 partners from the centres participating. Different themes were discussed with clinicians from The Groningen University Medical Center. Two workshops will be held annually with arranging commitments circulating between Groningen, Uppsala, Singapore, Newcastle and East Lansing in Michigan. In Uppsala October 5-7 2011 the second workshop was held, hosted by CRB at Uppsala University. In April 2012 a workshop was organized at the Michigan State University. In Newcastle October 9-10 2012 the fourth workshop was held, hosted by PEALS at Newcastle University.  In January 2013 a workshop was held in Singapore.