Elmien Brink, Palliative Care Social Worker, Cicely Saunders Institute for Palliative Care, King’s College Hospital, London, and Michael Berry, Specialist Registrar (Training Doctor), Imperial School of Anaesthesia, London, UK, explain the background to their longer article published in the November/December 2015 edition of the European Journal of Palliative Care.
On admission to the intensive care unit (ICU) many patients are thought to have a low probability of survival, and death remains common. Nonetheless, most of these patients receive an initial period of aggressive treatment until a medical consensus is reached that the condition is likely to be fatal, making continued intensive treatment inappropriate.
Thus, death in the ICU occurs almost exclusively after therapies have been limited or withdrawn. Moreover, the sudden nature of these deaths often compounds the distress of the bereaved families further. Increasingly the difficulties faced by those left behind are being acknowledged. The following case from our own personal practice highlights some of these issues.
Following a cardiac arrest at work, Jim got admitted to the intensive care unit. Prior to his admission, he was fit and well. Despite exhaustive efforts by the medical team Jim dies two days later. His wife Sue is very upset, desperately struggling to come to terms with the events over the last 48 hours. She is particularly distressed about telling her two young children – Daniel (10) and Sophie (8). Concerns regarding how to break the news to the children, as well as the impact of a second bereavement in the space of a short time, worry her. Daniel and Sophie have only very recently lost their grandfather with whom they were very close.
The intensive care team contact the Palliative Care Social Worker for advice and support. In the ensuing conversations information regarding the routine processes post death is given alongside some practical solutions of how to inform the children.
A few days later, Sue calls again desperate for further support because, as she says, “I cannot believe Jim is gone forever and I am struggling to cope [. . . ].”
Unfortunately, further long-term support is not provided by the hospital and she is referred to community bereavement services and placed on a waiting list.
(The names used are not the real names).
Since the publication of the Intensive Care Society guidelines for bereavement in 1998, offering bereavement follow-up services has become part of best practice.
However, there is surprisingly little guidance on the objectives, the structure and the training required to run bereavement services. Anecdotally, many follow-up programmes have emerged in an ad hoc manner focusing on the medical aspect of bereavement. Looking at the current literature, as well as our experience, we examine some of the crucial components of follow-up meetings. Namely, discerning who requires follow-up and how to go about identifying such individuals. We go on to highlight the importance of comprehensive psychosocial support for bereaved family members and training for staff offering bereavement care.
Regrettably, the evidence for bereavement care is scarce with research lacking validated clinical models, screening tools and the continued inability to clearly delineate who would benefit most from follow-up.
Prior to ubiquitously introducing bereavement follow-up into the intensive care environment, we need to consider the wider implications of value, cost and clinical effectiveness as well as how to provide these services in a professional manner.
Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Bereavement follow-up in adult intensive care units: practical considerations’ by Michael Berry and Elmien Brink, published in the November/December 2015 issue of the European Journal of Palliative Care (vol. 22.6).
If you have a web-based subscription to the journal you can download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.
EJPC Palliative Care Development Award 2016 – Deadline for nominations: 31 March 2016.
Do you know someone who has made a major contribution to palliative care policy development? Why not nominate them for the EJPC Palliative Care Policy Development Award? Launched by the European Journal of Palliative Care in collaboration with the European Association for Palliative Care, the award is aimed at professionals working in palliative care worldwide who have made a substantial contribution to policy development through research, clinical practice or as policy activists. Click here to view a post from last year’s award winner, Dr Emilio Herrera.
Make your nomination by 31 March 2016.