ICU · Ethics
Family-centred care and bereavement support in ICU
Also known as Family-centred care · ICU bereavement support · Family presence in ICU · PICS-Family · Shared decision-making in ICU · Withdrawal of life-sustaining therapy
Family-centred care in ICU recognises that critical illness affects the entire family, not just the patient. Components: flexible/open visiting hours, family participation in bedside rounds, family presence during procedures and resuscitation, ICU diaries, structured proactive communication (regular family meetings, SPIKES for breaking bad news, ISBAR for handover), and shared decision-making using substituted judgement. PICS-Family: up to 50% of family members develop depression, anxiety, PTSD, or complicated grief after a loved one's ICU admission or death. Risk factors: witnessing cardiac arrest/CPR, prolonged ICU stay, unexpected outcome, poor communication, low health literacy, decisions to withdraw life-sustaining therapy (WOLST). Prevent…
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Red flags
- Poor communication with families is the #1 cause of complaints and litigation in ICU
- PICS-Family affects up to 50% of family members — screen for and address
- Bereavement: contact family 2-4 weeks after death — provides closure and identifies complicated grief
- Inconsistent information from different staff members = confusion and loss of trust
- Family presence during resuscitation requires a trained family support person — never unaccompanied
- Prognostic discordance (family much more optimistic than clinicians) predicts conflict and adverse bereavement outcomes
- A request for 'doing everything' may mask fear, guilt, or misunderstanding — explore before labelling conflict
- Surrogate decisions rarely match what the patient would have wanted — substituted judgement is imprecise
Meet the patient
A 68-year-old woman is in cardiac arrest. After fifteen minutes of advanced life support there is no return of spontaneous circulation, and her husband of forty years arrives and asks to come in. The senior nurse worries his presence will distress the team and disrupt the arrest.[3]
The question on the resus floor is the question that runs through all of family-centred care: do we treat the family as visitors to be managed, or as partners to be supported? The evidence says partners — and the registrar who learns that one fact carries it into every meeting, every withdrawal, and every bereavement call.[1]
References15ShowHide
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- [2]Cameron JI, Chu LM, Matte A, et al. One-Year Outcomes in Caregivers of Critically Ill Patients N Engl J Med, 2016.PMID 27168433
- [3]Jabre P, Belpomme V, Azoulay E, et al. Family presence during cardiopulmonary resuscitation N Engl J Med, 2013.PMID 23484827
- [4]Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU N Engl J Med, 2007.PMID 17267907
- [5]Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine Crit Care Med, 2008.PMID 18431285
- [6]The SUPPORT Principal Investigators A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators JAMA, 1995.PMID 7474243
- [7]Scott SD, Hirschinger LE, Cox KR, et al. The natural history of recovery for the healthcare provider second victim after adverse patient events Qual Saf Health Care, 2009.PMID 19812092
- [8]Kross EK, Curtis JR Burden of psychological symptoms and illness in family of critically ill patients: what is the relevance for critical care clinicians? Crit Care Med, 2008.PMID 18520648
- [9]Jones C, Bäckman C, Capuzzo M, et al. Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial Crit Care, 2010.PMID 20843344
- [10]Jones C, Bäckman C, Griffiths RD Intensive care diaries and relatives' symptoms of posttraumatic stress disorder after critical illness: a pilot study Am J Crit Care, 2012.PMID 22549573
- [11]Ullman AJ, Aitken LM, Rattray J, et al. Intensive care diaries to promote recovery for patients and families after critical illness: A Cochrane Systematic Review Int J Nurs Stud, 2015.PMID 25869586
- [12]Azoulay E, Pochard F, Chevret S, et al. Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: a multicenter, prospective, randomized, controlled trial Am J Respir Crit Care Med, 2002.PMID 11850333
- [13]Bosslet GT, Pope TM, Rubenfeld GD, et al. An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units Am J Respir Crit Care Med, 2015.PMID 25978438
- [14]Cox CE, Lewis CL, Hanson LC, et al. Development and pilot testing of a decision aid for surrogates of patients with prolonged mechanical ventilation Crit Care Med, 2012.PMID 22635048
- [15]Scheunemann LP, Cunningham TV, Arnold RM, et al. How clinicians discuss critically ill patients' preferences and values with surrogates: an empirical analysis Crit Care Med, 2015.PMID 25565458