Supporting family wellbeing during end-of-life care in the intensive care unit

An article written by Alysia Coventry, PhD Candidate, University of Melbourne

The primary goal of an intensive care admission is to assist patients to survive critical illness. However, the reality is that a substantial number of patients admitted to the intensive care unit (ICU) will die. In Australian ICUs, the estimated mortality rate is 11%, which equates to over 19,000 episodes of end-of-life care annually. [1] Families of intensive care patients are often faced with a rapid transition from curative treatment to end-of-life care, affording them little time to prepare for an anticipated death. Evidence of suboptimal care and unmet family needs regarding communication, support and bereavement care suggests palliative and end-of-life care that prepares families for death in the ICU remains a challenge for healthcare systems globally.

In the ICU, a state of preparedness explains the circumstance in which the family of the dying person can manage in the best way possible for them, the death, their sadness, loss and grief. [2] Family members who feel unprepared for an impending death can experience significant stress, which can lead to profound and enduring psychological disturbance well into their bereavement. Concerning as this may seem, there is evidence that for family members of patients who die in the ICU, preparedness for death is an important determinant of psychological adjustment beyond end-of-life care. What exactly does this mean for intensive care clinicians? It means that we can do something about it.

It is widely accepted that support and care aligned with the values, needs and preferences of the patient, and their family is a core feature of holistic palliative and end-of-life care, which can foster psychological wellbeing in care recipients. So, why is it so tough for us to get this fundamental care just right in the ICU? Whilst a variety of interventions have been evaluated to address the physical, spiritual, social, and psychological needs of families of intensive care patients, uncertainty persists regarding which are most effective in preparing families for an anticipated death. To address this evidence gap, we undertook a scoping review to identify and characterise interventions that help prepare families for the possibility of death in adult intensive care. [3]

What did we find out?

We identified seven randomised controlled trials evaluating interventions that aimed to prepare families of ICU patients for the possibility of death. [4] Two trials were powered and reported positive results. Key findings included: (1) a structured family meeting to prepare family members for imminent death, (2) check-ins with family members during dying, and (3) a meeting after death to offer condolences. These interventions significantly reduced symptoms of post-traumatic stress, anxiety, depression, and prolonged grief, in family members of patients for who were expected to die in the ICU. Printed information was also offered to reaffirm verbal information.

Implications for practice

Several pragmatic recommendations are offered to ICU clinicians to enhance family member preparedness for death:

Communication is the primary mechanism by which enhance family member preparedness and wellbeing during end-of-life care. [2]
Communication should involve the intensivist and primary nurse collaboratively.
Mnemonics can be used to guide communication at the end of life. [4]
Existing multidisciplinary palliative care family meeting guidelines may be useful to guide family meetings within intensive care settings. [5, 6]

Finally, there are several simple care actions that can enhance family member preparedness, and may decrease distress:

Acknowledge emotions
Address family member uncertainty
Afford multiple opportunities for questions
Listen actively
Respond directly to comments made by family members
Use open ended questions
Be comfortable in silence
Express empathy
Reassure, reassure, reassure
Assess spiritual, religious, and cultural needs
Reaffirm patient comfort is your priority
Involve family in patient care
Check in with family regularly during dying (nurses and doctors)
Encourage family members to talk to, touch and say goodbye to the patient
Support family presence at time of death.

I'm passionate about finding better ways to support families navigating grief in the ICU. My hope for the future is that by addressing the unmet needs of family members preparing for an anticipated death in the ICU, we can reduce the psychological burden experienced by this vulnerable population.