Mort & Anthropologie.

Soins palliatifs, Ritualité, Mémoire, Deuil, Suicide assisté, Ethique, Esthétique, Technologie, Corps, Fin de vie, Croyance, Pratique professionnelle, Crémation, Catastrophe,

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Palliative care and the world of work : promoting integrated care for professionally active informal carers who support a severely ill person

High expectations are placed on family members who support severely ill persons: working and supporting a dying relative can lead to important tensions. How do they deal with the competing demands of working and supporting a dying relative? What resources can they mobilize to adequately support their dying relative? To what extent are employers and colleagues concerned with death and dying issues? Our research team has conducted a study of these questions over a three and a half year period. This communication will present elements drawn from this research; it will specifically focus on the lack of coordination between what is happening at the workplace and the support given by palliative care teams in health facilities and at home.

Our anthropological study, conducted in French-speaking Switzerland, involved seven field partners (companies and palliative care services). It was financed by the Swiss Science Foundation within the context of its national research program ‘End-of-Life ( The three members of the research team – Marc-Antoine Berthod, Yannis Papadaniel and Nicole Brzak, conducted more than 60 in-depth interviews with professionally active informal carers supporting a severely ill family member. With their consent and if the situation permitted it, we also met with their employers and colleagues, as well as with various professionals involved in each situation (general practitioners, nurses and social workers); this part of the study involved approximately 70 further interviews.

The main measures targeting professionally active informal carers aimed at helping them conciliate professional activity and support given to a dying relative are ‘compassionate care leaves’ – or other similar arrangements – introduced in many countries’ legislation during the past fifteen years. Yet these rights are not very well known and compassionate leave is consequently rarely requested. Moreover leave is usually granted to women – thus, perpetuating gender bias. Consequently, if opportunities for leave and related financial compensation are key elements in the arrangements employers implement to enhance work-life-support balance, these arrangements do not in fact do away with the need for difficult negotiations, nor do they prevent misunderstandings between employers, colleagues and the persons concerned. The latter – men as well as women – generally seek flexibility at the workplace, without necessarily wanting to entirely interrupt their professional activity (except in the case of sick children). Moreover, they fear administrative difficulties when requesting leave.

This research is of interest to professionals and decision makers – policy makers, directors of palliative care facilities, health and social work professionals – who have to identify, implement and improve measures aimed at helping informal carers to conciliate care and professional activity; it provides them with a detailed analysis of the concrete issues experienced by those who have to struggle to find an adequate work-life balance in ‘end of life’ situations. More concretely, this communication brings up the issue of the role of social workers as it presents possible innovative interventions that attempt to better coordinate actors from the world of work and actors from the field of health care, of palliative settings as well as of home care.

Marc-Antoine Berthod

Annual Conference of the Social Work Hospice and Palliative Care Network, Chicago, Etats-Unis, 7 mars 2016.