Decision-making in end-of-life care in intensive care

A qualitative exploration of decision-making in end-of-life care for intensive care patients reveals a deeply human process that cannot be reduced to a treatment plan or a signed form. Families and clinicians negotiate comfort, dignity, uncertainty and trust while the patient’s voice may be absent, delayed or expressed through earlier values. The setting is often fast-moving, with clinical deterioration, competing opinions and time pressures compressing conversations that carry lasting consequences.

In Australia, these decisions sit within a familiar mix of public and private hospitals, Medicare, state-based law and advance care planning. In Brisbane, tertiary services, regional referrals and culturally diverse communities add further complexity. Qualitative research helps show how local systems, relationships and language shape what happens at the bedside and where support is needed.

Why qualitative evidence matters

Clinical records can show which treatment was withdrawn or limited, yet they rarely capture how a choice was reached. Interviews and focus groups can expose the phrases that confused families, the information they wanted and the moments when trust strengthened or fractured. They also show whether a decision felt shared, imposed or aligned with the patient’s known wishes.

A credible qualitative study compares perspectives rather than treating the family or clinician as the sole authority. Where possible, it includes people with capacity, bereaved relatives, intensivists, nurses, palliative care clinicians, pastoral care workers and interpreters. Sampling across Queensland can identify differences between tertiary intensive care in Brisbane, smaller hospitals and private critical care units without assuming every setting behaves alike.

Decisions unfold over time

Decision-making is rarely a single conversation. Prognosis evolves, an intervention may be tried to buy time, and family members may need repeated explanations before accepting that recovery is no longer likely. Early goals-of-care discussions can therefore be revisited as the illness changes rather than reserved for the moment withdrawal or limitation of treatment is proposed.

Time itself becomes an ethical issue. Waiting for certainty can prolong invasive treatment, while premature certainty can rob families of hope and preparation. Clinicians need to explain the difference between what is known, what is uncertain and what can still be achieved, including symptom relief, family presence and support at home.

Communication, capacity and consent

Australian adults are presumed to have decision-making capacity for their own health care, but capacity can fluctuate with sedation, illness or delirium. Capacity involves understanding, weighing and communicating a choice, so time, privacy, repetition and communication aids may be as important as the medical facts. A patient’s refusal or acceptance should be respected through supported decision-making, even when relatives disagree.

In Brisbane’s multilingual communities, a qualified interpreter is part of the process, not an optional support. Relatives should not automatically be asked to interpret complex prognosis or consent discussions. The same principle applies when communication is delayed through critical illness: use the patient’s prior statements, advance care planning documents and authorised decision-makers, while recognising that a relative’s closeness does not by itself grant legal authority.

Values, culture and family

Families often try to represent values rather than choose a treatment on technical grounds. These values may include being at home, avoiding ventilation, maintaining independence, observing faith or accepting a different threshold of risk. Cultural background can shape who should participate and how disagreement is expressed, yet broad labels can obscure the preferences of an individual. Direct, respectful inquiry is more useful than assumptions.

For Aboriginal and Torres Strait Islander patients, culturally safe care may involve kinship networks, community leaders or traditional knowledge alongside the patient’s own wishes. Some families prefer a collective approach, while others make highly individual choices. Queensland’s geography also matters: when an ICU patient is transferred from a regional or remote community, early conversations should include whether returning home for comfort-focused care is realistic and safe.

Emotional burden for clinical teams

Emotion is often present before disagreement becomes visible. Relatives may feel guilt, anger, grief or fear that they are failing a loved one, while clinicians may experience moral distress when treatment appears inconsistent with prognosis or a patient’s wishes. Early involvement of specialist palliative care can support symptom management and communication, but it should complement, not displace, the ICU team’s ongoing relationship with the family.

The environment affects how these conversations are handled. Australian units vary in staffing, access to quiet family spaces, continuity of care and referral pathways, particularly between public and private systems. Protected interdisciplinary discussions, structured family meetings and debriefs after a death can reduce isolation and improve consistency. Support also needs to reach nurses and junior doctors, whose repeated exposure to distress can otherwise remain unacknowledged.

Ethics, governance and team clarity

Ethical governance should make the patient’s voice and best interests visible while protecting the privacy of families and clinicians. Under Queensland decision-making principles, an authorised substitute decision-maker should use the patient’s wishes or best interests as the central guide; institutional policy and the applicable legislation determine the formal process. Documentation should record who was consulted, what options were discussed and why a plan is considered proportionate and consistent.

Clear roles are especially important when medicine, nursing, allied health, palliative care and interpretation services converge. A resource on writing clear job descriptions, developed for tuberculosis laboratory staff, offers a transferable lesson: teams work more safely when responsibilities, escalation routes and decision boundaries are explicit. The same discipline can prevent family meetings from becoming fragmented or ethically ambiguous.

Translating findings into better care

Practical change begins with the themes identified in the research: earlier goals-of-care conversations, clearer uncertainty language, better interpreter access, structured family meetings and routine review after changes in prognosis. Services can test these ideas, gather feedback from patients, relatives and staff, and audit whether documentation reflects the patient’s priorities. Small changes should be evaluated for reach and effect across urban, regional and private settings.

Strong partnerships can connect qualitative findings with education, ethics and clinical redesign. Brisbane Diamantina Health Partners brings universities, research institutes and health services together to support this translation. Cross-sector projects can share resources, develop guidance and evaluate implementation, while also recognising that a framework successful in a Brisbane tertiary ICU may need adaptation elsewhere in Queensland.

Explore the related research, connect with teams working in critical illness and end-of-life care, and bring the findings to local ICU, palliative care and ethics groups. Support work that connects community perspectives with clinical experience so difficult decisions remain grounded in each patient’s voice, values and dignity.