Intensive Care Med
https://doi.org/10.1007/s00134-023-07005-y
RECENT ADVANCES IN ICU
A continuum of communication: family
centred care at the end of life in the intensive
care unit
Nancy Kentish‑Barnes1* and Stephanie Meddick‑Dyson2
© 2023 Springer-Verlag GmbH Germany, part of Springer Nature
In the context of end-of-life (EOL) care in the intensive
care unit (ICU), recent research has often focussed on
patients’ families. Studies have shown the importance
of communication between ICU clinicians and fami-
lies, highlighting the impact on family symptoms in the
months that follow the patient’s death [1, 2]. Bereaved
families who experience communication as unsatisfac-
tory are at higher risk of post-ICU burden [3]. During
the coronavirus disease 2019 (COVID-19) pandemic,
the quality of communication was undermined due to
restricted visiting policies, with potential negative effects
on bereaved families’ well-being. Recent research stresses
the importance of communication in all forms, not only
information giving. Communication comes from the
Latin communicare, meaning “to share” or “to be in rela-
tion with”. It is a two-way process including verbal and
non-verbal interaction, empathy, active listening, and
attention to each specific person, family unit and culture.
In the last 2 years, a series of articles have been published
on the subject. We have selected four papers that confirm
the importance of quality communication between ICU
teams and families of patients at a risk of death, and that
cover different and innovative aspects of care and sup-
port provided to family members that can potentially
impact on practices.
The first of these papers emphasises the need to
enhance culturally sensitive communication [4]. Brooks
et al. recognised that culture influences the needs of
patients and families at the end of life [4]. They identified
*Correspondence: nancy.kentish@aphp.fr
1
Famiréa Research Group, Medical Intensive Care Unit, AP‑HP Nord, Saint
Louis University Hospital, 1 Avenue Claude Vellefaux, 75010 Paris, France
Full author information is available at the end of the article
that too few patients had a cultural assessment under-
taken, the majority by social workers [4]. Content analy-
sis of notes related to culturally sensitive care identified
that facilitating cultural and religious rituals, involvement
of religious leaders, use of an interpreter to translate key
information, and managing differences in cultural values
and beliefs were important components [4]. They, there-
fore, concluded that to provide culturally sensitive care,
multidisciplinary assessment should be proactively built
into routine daily care, addressing these components [4].
The second shows the importance of family empower-
ment and honouring patients’ wishes at the end of life [5].
The Three Wishes Project (3WP) began in 2013 and facil-
itates personalisation of the dying process for patients
and families by eliciting and implementing wishes [6].
The project has since been scaled to widespread use and
its positive impact demonstrated [7]. In 2022, Neville
et al. compared family ratings of EOL care with and with-
out 3WP involvement and found an improved rating in
emotional and spiritual support [5]. It is, therefore, sug-
gested that personalisation of the dying process by elicit-
ing and implementing tailored wishes can improve care
[5].
The third paper is COVID-19 focussed and stresses
the importance of continuity and presence in commu-
nication and relationships [8]. In this qualitative study,
19 bereaved family members of patients who died from
severe COVID-19 in French ICUs gave insight into their
lived experience [8]. Difficulty in building a distance
relationship with the ICU clinicians and the experi-
ence of solitude, the risks of separation from the dying
patient, disrupted EOL rituals, and the feeling of “sto-
len moments” with the deceased emerged as impor-
tant themes [8]. Four avenues of improvement were
highlighted: the importance of safeguarding the bond
between patient and family, prioritising communication
between clinicians and families, preserving EOL rituals,
and providing effective social support in times of social
isolation [8].
The last paper reports a randomised controlled trial
that shows the positive impact of a three-step commu-
nication and support strategy for family members of
patients dying in the ICU [9]. Thirty-four ICUs in France
were recruited and randomised to usual care or an inter-
vention comprising three meetings with relatives [9].
An initial meeting facilitating families’ preparedness for
the patient’s death, an ICU room visit during the dying
process providing active support, and a meeting offering
condolences following the patient’s death [9]. The three
steps targeted crucial moments in the dying process and
were found to significantly reduce the number of relatives
with prolonged grief symptoms [9]. Use of this three-step
strategy is, therefore, recommended.
Findings and reflections from these four important
papers can be mapped to a continuum of the necessary
components of communication to support families at the
EOL within ICUs (Fig. 1).
family conference trialled within the three-step strategy
focuses on this aspect, asking if relatives wished to be
present at the time of death or had any specific requests,
including spiritual support [9, 10]. These meetings also
allowed clinicians to give information around treatment
decisions and processes [9]. Brooks et al. highlighted the
importance of determining cultural wishes and prefer-
ences as early as possible during the ICU stay, and tailoring
communication [4]. They suggested regular use of inter-
preters where language was a barrier as well as increasing
clinicians’ cultural awareness [4]. This seems particularly
relevant in today’s increasing ethnically, culturally, and
linguistically diverse populations that present unique chal-
lenges in the hospital and that require understanding and
respect for all cultures. The 3WP used information gath-
ering to elicit patients’ wishes and provide opportunity to
honour these [5]. Interviews with bereaved families indi-
cated that during information giving interactions, they
need more than isolated data about the patient’s condition,
but also support and empathy [8]. Non-verbal communi-
cation is fundamental when supporting families [8]. With-
out adequate information, families experienced a feeling of
unreality and inability to process [8, 11].

Information: gathering and giving Recognise and validate emotions

Establishing patient and family wishes from the beginning All stages of the three-step communication intervention
of their ICU admission was a common theme. The initial aimed to support families to express and process their

Continuity of communication

Recognize and
Information Non-abandonment Closure
validate emotions

Gathering Giving • Encourage • Room visit during • Peaceful memories

families to express dying to support of last moments
emotions (ask family and answer • Honour the patient
• Starting at patient • During EOL family open ended questions • Being able to
admission conference questions) / Listen • Being able to physically visit
• During EOL family • Adapted to cultural • Empower families: physically visit (including during a
conference context opportunity (including during a pandemic)
• Patient and family’s • Use of interpreter to honour the pandemic) • After death rituals
needs when needed patient’s wishes • Involvement of all • Meeting with
• • Need for more than • Avoid focussing clinicians clinicians after the
needs just information exclusively on • Involvement of death
• • Using verbal medical needs social worker and/ • Possible follow-up
and non verbal • Manifestations of or psychologist visit on request
communication empathy
• Need for effective
social support
• Respect cultural
rituals

Fig. 1 The continuum of communication to support families at the end of life in the intensive care unit
emotions [9]. Open ended questions and active listening
at multiple intervals provided this opportunity [9, 12].
Once wishes were recognised by the 3WP, this gave per-
mission and empowered families to carry out their own
ideas to comfort the patient [5]. As mentioned, families
described the need for empathy to perceive effective
communication [8]. The focus should not be on medical
needs alone [8]. Social support is paramount in times of
isolation to ensure families can express their emotions
[8], and respect for cultural rituals is an important aspect
of empowerment and validation [4, 8].
Non‑abandonment
The risk of families feeling abandoned by the clinical
team, the patient, or in fact that they are abandoning
the patient, is recognised where communication is inad-
equate during the dying process [3, 8, 9]. Clinician visits
to the ICU room during this time looked to address this
need [9]. Importantly, the positive impact of being able
to physically visit family members was seen during the
pandemic [8]. All papers discussed the importance of the
ICU team involvement in family support [4, 5, 8, 9] and
showed that continuity was favourable [8]. Social workers
or psychologists were highlighted as having key specialist
skills [4, 9].
Closure
The final part of the continuum is closure for families
around the death of their loved one. The 3WP high-
lighted the crucial importance and lasting impression
of final moments [5]. During the pandemic, the impor-
tance of being present with family members before and
after death to avoid disbelief and ambiguity was shown
[8], as was the significance of respecting and facilitating
EOL rituals in the bereavement process [4, 5, 8]. A family
meeting after death provides opportunity for closure [9].
These continuum components offer critical intersec-
tions where family support can be concentrated, both
affirming existing research and providing new recom-
mendations: the need to increase clinicians’ cultural sen-
sitivity and to proactively address different cultural needs
daily, the importance of personalising the dying process
by eliciting and implementing specific, tailored wishes,
and the strong recommendation to follow the three-step
communication and support strategy that is associated
with decreased symptoms in bereaved family members.
Author details
1
Famiréa Research Group, Medical Intensive Care Unit, AP‑HP Nord, Saint Louis
University Hospital, 1 Avenue Claude Vellefaux, 75010 Paris, France. 2 Wolfson
Palliative Care Research Centre, Hull York Medical School, Hull, UK.
Declarations
Conflicts of interest
SMD has no conflicts of interest to declare. NKB has received research funding
from the French Ministry of Health and is co-author of two of the papers
discussed in this piece.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in pub‑
lished maps and institutional affiliations.
Received: 17 January 2023 Accepted: 11 February 2023
References
1. Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C,
Annane D, Bleichner G, Bollaert PE, Darmon M et al (2005) Risk of post-
traumatic stress symptoms in family members of intensive care unit
patients. Am J Respir Crit Care Med 171(9):987–994
2. Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, Bar‑
noud D, Bleichner G, Bruel C, Choukroun G et al (2007) A communication
strategy and brochure for relatives of patients dying in the ICU. N Engl J
Med 356(5):469–478
3. Kentish-Barnes N, Chaize M, Seegers V, Legriel S, Cariou A, Jaber S, Lefrant
JY, Floccard B, Renault A, Vinatier I et al (2015) Complicated grief after
death of a relative in the intensive care unit. Eur Respir J 45(5):1341–1352
4. Brooks LA, Manias E, Bloomer MJ (2022) How do intensive care clinicians
ensure culturally sensitive care for family members at the end of life? A
retrospective descriptive study. Intensive Crit Care Nurs 73:103303
5. Neville TH, Taich Z, Walling AM, Bear D, Cook DJ, Tseng CH, Wenger NS
(2022) The 3 wishes program improves families’ experience of emotional
and spiritual support at the end of life. J Gen Intern Med 38:1–7
6. Cook D, Swinton M, Toledo F, Clarke F, Rose T, Hand-Breckenridge T, Boyle
A, Woods A, Zytaruk N, Heels-Ansdell D et al (2015) Personalizing death in
the intensive care unit: the 3 Wishes Project: a mixed-methods study. Ann
Intern Med 163(4):271–279
7. 3 Wishes Project. https://​3wish​espro​ject.​com
8. Kentish-Barnes N, Cohen-Solal Z, Morin L, Souppart V, Pochard F, Azoulay
E (2021) Lived experiences of family members of patients with severe
COVID-19 who died in intensive care units in France. JAMA Netw Open
4(6):e2113355
9. Kentish-Barnes N, Chevret S, Valade S, Jaber S, Kerhuel L, Guisset O, Martin
M, Mazaud A, Papazian L, Argaud L et al (2022) A three-step support
strategy for relatives of patients dying in the intensive care unit: a cluster
randomised trial. Lancet 399(10325):656–664
10. Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld
GD (2001) The family conference as a focus to improve communica‑
tion about end-of-life care in the intensive care unit: opportunities for
improvement. Crit Care Med 29(2 Suppl):N26-33
11. Salins N, Deodhar J, Muckaden MA (2016) Intensive Care Unit death and
factors influencing family satisfaction of Intensive Care Unit care. Indian J
Crit Care Med 20(2):97–103
12. Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Ruben‑
feld GD (2005) Missed opportunities during family conferences about
end-of-life care in the intensive care unit. Am J Respir Crit Care Med
171(8):844–849