There are some experiences most of us never imagine happening.

When a sudden, catastrophic health crisis leaves someone unable to speak for themselves,
families may be asked to make end-of-life decisions they never expected to face.

For example, this might mean:

Receiving an emergency call or text.
Following signs to the intensive care unit.
Finding your loved one connected to machines.
Hearing, “All we can do is make them comfortable.”
Being asked to consider the unthinkable.
Thinking . . . this isn’t happening.

But for many families, it does.

Every experience is unique.

Yet, many families find themselves inside a reality they never expected or wanted.

The experience is more than a role

When a patient is unable to make medical decisions for themselves, someone else may be asked to make decisions on their behalf. Often, this person is family.

In medical research and policy, they are referred to as an ‘end-of-life decision-maker’ or ‘end-of-life surrogate.’ Defined by the decisions they are asked to make. More often, they are simply called ‘family’ or ‘next of kin.’

In real life, we are husbands, wives, partners, fathers, mothers, brothers, sisters, sons, and daughters. Connected in life through marriage, birth, history, duty, conflict, care, and often love.

Both carry a story.

Beneath the research, policy, and paperwork is a person facing a decision they did not see coming.

It is not only a medical moment.

It is a human one.

And yet we still know very little about what it is like to live through this experience.

A hidden branch of end-of-life care

In palliative and end-of-life care, families may be asked to make a wide range of decisions: decisions about treatment, medication, allergies, food, visitors, religious or spiritual beliefs, and how to comfort their loved one in their final days.

These decisions can be difficult and sometimes painful. And they matter deeply. Often remembered as acts of love and care: choosing the right blanket, gathering the family, or reading the patient’s favourite prayer. These decisions may later provide comfort for the bereaved.

But there is one decision that stands apart from the rest, rarely acknowledged or named.

When a health crisis is sudden and catastrophic, care may quickly shift from prolonging life to easing suffering. Families may have little time to prepare, to comfort, to decide.

In these situations, family members may be asked to agree to withdraw life-sustaining treatment.

This decision often carries a different kind of weight.

And, for many, it does not end when the decision is made.

What is it like to carry this decision?

Much of what we know about end-of-life surrogate experiences comes from medical literature, including its name. This research has provided, and continues to provide, an important foundation for medical policy, ethical guidance, communication, decision-making, and understanding the psychological and emotional impact of the decision.

Medical advances have made it possible to sustain life in ways earlier generations could not have imagined. Legal and ethical frameworks have also evolved, including landmark cases in the US and UK.[1] These frameworks guide clinicians, protect patients, and support surrogate decision-making.

But there is still more to understand, particularly as a lived experience.

What was felt, sensed, or known in the body?

How was time experienced: when traveling, while waiting for updates, or when being asked to decide?

What was it like to carry the voice of the patient, the family, and your own?

What was it like to schedule the withdrawal?

What mattered most in those final moments: family, prayer, silence, touch?

How has the decision been lived with after one year, five years, ten years, or twenty years?

Why this matters

This experience is more common than many realise. In the US, roughly 1 in 5 deaths occur during or shortly after ICU admission (Angus et al., 2004). Research on end-of-life practices in European intensive care units found that decisions to withhold or withdraw treatment preceded around 70% of ICU deaths (Sprung et al., 2003).

The decision may be a medical and ethical one, but the experience of agreeing to withdrawal is lived by a person. This experience may sit quietly behind stories of grief, trauma, family responsibility, intensive care, and end-of-life care. It may carry its own complicated emotions that never quite get acknowledged or named.

While there are many studies exploring the emotional burden and psychological toll on end-of-life decision-makers (Wendler & Rid, 2011), we have yet to understand how best to support them (Butler et al., 2025; Courtright & Downar, 2025).

A deeper understanding of how this experience is lived seems like a necessary next step in supporting people to live with it.

About this research

I’m Marcie Boyer, an existential psychotherapist and doctoral researcher at Middlesex University and the New School of Psychotherapy and Counselling. My research explores the experiences of midlife women who were involved in the decision to withdraw life support from their mothers following a sudden, unexpected illness or injury. This study has received ethical approval and forms part of my Doctorate in Existential Psychotherapy and Counselling.

If this research speaks to you, something you care about, or connects to your area of work/interest, please get in touch.

If you would like to read more about my study, or see whether you may be eligible to take part, you can find more information here: https://marcieboyertherapy.com/research/take-part-in-the-study/

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[1] Key legal cases include In re Quinlan in the US (1976), Airedale NHS Trust v Bland (1993) and NHS Trust v Y (2018) in the UK.

References

Angus, D. C., Barnato, A. E., Linde-Zwirble, W. T., Weissfeld, L. A., Watson, R. S., Rickert, T., Rubenfeld, G. D., & Robert Wood Johnson Foundation ICU End-Of-Life Peer Group. (2004). Use of intensive care at the end of life in the United States: An epidemiologic study. Critical Care Medicine, 32(3), 638–643. https://doi.org/10.1097/01.ccm.0000114816.62331.08

Butler, R. A., Seaman, J. B., Felman, K., Stonehouse, W., San Pedro, R., Morse, J. Q., Chang, C.-C. H., Lincoln, T., Reynolds, C. F., Landefeld, S., Happ, M. B., Song, M.-K., Angus, D. C., Arnold, R. M., & White, D. B. (2025). Randomized Clinical Trial of the Four Supports Intervention for Surrogate Decision-Makers in Intensive Care Units. American Journal of Respiratory and Critical Care Medicine, 211(3), 370–380. https://doi.org/10.1164/rccm.202405-0931OC

Courtright, K. R., & Downar, J. (2025). The Struggle Continues: Improving Outcomes for Surrogate Decision-Makers after the ICU. American Journal of Respiratory and Critical Care Medicine, 211(3), 309–311. https://doi.org/10.1164/rccm.202411-2233ED

Sprung, C. L., Cohen, S. L., Sjokvist, P., Baras, M., Bulow, H.-H., Hovilehto, S., Ledoux, D., Lippert, A., Maia, P., Phelan, D., Schobersberger, W., Wennberg, E., Woodcock, T., & for the Ethicus Study Group. (2003). End-of-Life Practices in European Intensive Care Units: The Ethicus Study. JAMA, 290(6), 790. https://doi.org/10.1001/jama.290.6.790

Wendler, D., & Rid, A. (2011). Systematic Review: The Effect on Surrogates of Making Treatment Decisions for Others. Annals of Internal Medicine, 154(5), 336–346. https://doi.org/10.7326/0003-4819-154-5-201103010-00008