Actual and preferred location of death for children known to a palliative care service
An article written by Victoria Sun and A/Prof Tiina Jaaniste
Why research in this area is needed
Thousands of children living in Australia have a life-limiting condition [1]. Palliative care aims to improve end‑of‑life experiences, including supporting families to plan for their preferred location of death. Some families prefer a home death due to comfort and closeness of loved ones, while others prefer hospital for medical support and familiarity of a ward and its staff. In some regions, paediatric hospices are available, offering a home‑like environment with specialised, multidisciplinary care.
Despite clinicians’ best efforts, families’ preferences cannot always be met, such as if there is a lack of timely planning or adequate service availability.
We conducted this study to find out: (1) where paediatric palliative care patients died, (2) which families preferred different locations and why, and (3) what factors were associated with dying at the preferred place.
What we did
We reviewed electronic medical records and death review forms for 476 patients known to two Sydney-based paediatric palliative care services. All documented conversations or plans regarding families’ preferences about location of death were included. [2]
What we found
1. Actual location of death
Hospital was the most common location of death (50%), followed by home (29%) and hospice (21%). Patients who died at home did not differ significantly from those who died elsewhere on various patient, family or sociodemographic factors. This may suggest equitable access to end-of-life options.
Patients who had previously visited or stayed at a hospice were significantly more likely to die at that facility, perhaps due to familiarity with the facility, and previous positive experiences of receiving respite care there.
2. Preferred location of death
At the last documented conversation regarding the location of an impending death, 36% of families preferred home, 29% hospice and 26% hospital. Preference for hospital increased as conversations occurred closer to death. Notably, in the final two weeks of life, 32% of families changed their preference for location of death at least once.
These results highlight how location of death preferences may evolve over time. As the patient is nearing death, families may feel less confident managing symptoms at home or may fear inadequate clinical support. [3]
Psychosocial factors were the most common reasons for location of death preferences at all time points; these included proximity to family, caregiver stress, and the child’s wishes. Clinical care factors were less common reasons overall but increased in frequency near the end of life.
3. Congruence between preferred and actual location of death
Most patients (88%) died at the family’s preferred location of death. Almost all families preferring a hospital death (98%) achieved that outcome. In comparison, 92% of families preferring hospice and 79% preferring home achieved their preferred location.
Over one-third of the paediatric palliative care patients did not have any medical record documentation of the family’s preferred location of death.
Why it matters
1. Location of death discussions need to occur more consistently and be better documented.
Only 62% of families had a recorded location of death preference. This highlights the need for engaging families in more systematic, routine conversations regarding a child’s impending death, with clear documentation practices that are shared across services.
2. Family preferences change over time, requiring multiple discussions.
Because clinical, psychosocial and logistical factors evolve, conversations about location of death should occur at several time points. These conversations are best facilitated with a timely referral to paediatric palliative care.
3. Support for home deaths.
Because 21% of families wanting a home death were unable to achieve it, clinicians should consider what can be done to better support this preference. This may include earlier discussions with the family or ensuring timely transport between locations. At broader system levels, improvements may include expanding home-based medical support and strengthening paediatric-specific training for community palliative care teams.
Reference
- Paediatric Palliative Care Australia & New Zealand (PaPCANZ). A practical guide to palliative care in paediatrics (The Green Book). PaPCANZ; 2023.
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Sun V, Coombs S, Armitage N, Dowling M, Jaaniste T. Actual and preferred location of death for children known to a palliative care service. Omega (Westport). 2026.
- Noyes M, Herbert A, Moloney S, Irving H, Bradford N. Location of end-of-life care of children with cancer: a systematic review of parent experiences. Pediatr Blood Cancer. 2022;69(6):e29621.
Authors
Victoria Sun
Former Honours’ research student based in Department of Palliative Care
Sydney Children’s Hospital & School of Clinical Medicine, University of New South Wales
A/Prof. Tiina Jaaniste
Head of Pain & Palliative Care Research, Department of Palliative Care
Sydney Children’s Hospital & School of Clinical Medicine, University of New South Wales