Dr. Anthony Herbert – Queensland Children’s Hospital Brisbane Director of the Paediatric Palliative Care Service at the Queensland Children’s Hospital, Brisbane. Research interests include communication, education and the use of medicinal cannabis.
Fields, D., Fraser, L. K., Taylor, J., & Hackett, J. (2023). What Does ‘Good’ Palliative Care Look Like for Children and Young People? A Qualitative Study of Parents’ Experiences and Perspectives. Palliat Med, 2692163231154300.
This study was qualitative in nature using semi-structured interviews (telephone or video-call). A key goal of the study was to look at the applicability of a quality standard for children’s palliative care in England (the National Institute for Health Care and Excellence – NICE) for children and young people (aged 0 – 17 years) in England1. Fourteen mothers and three fathers were interviewed, with seven parents being bereaved.
The quality standards include 6 statements looking at Advance Care Plans, care co-ordination, emotional and psychological support, multidisciplinary care, grief and loss support and 24-hour access to nursing care and advice from a medical specialist in paediatric palliative medicine.
Participants were recruited purposively to ensure variations in care provision, and that there was diversity in terms of ethnicity, geography, and socio-economic status. Thematic analysis was undertaken informed by Appreciative Inquiry. The themes of advance care planning (ACP) is discussed in more detail in this review.
Introducing an advance care plan (ACP) was one complex topic of discussions for parents. A focus away from end-of-life care, and having sufficient time to have this conversation over time seemed important. Ongoing review of advance care (and other) plans was also considered important to participate in, and to be treated more than a tick box exercise. Some parents described the helpfulness of ACPs as it took away the fear of the unknown and brought a semblance of calm to a potentially difficult situation. Parents also felt that ACP reduced their worries about being “blamed” for doing something wrong, and would minimise disagreement with health professionals at the time the child died.
Well selected quotes were also used in the manuscript. For example, the following quote relating to the theme of care co-ordination demonstrating clinicians empowering parents
Parent: We found that the paediatrician was extremely good at explaining the benefits and the drawbacks of certain offerings, certain interventions. He explained to us in a way we actually understood. We found him to be really excellent in making clear what our decisions would mean. We always felt that we were the ones in charge in making those decisions. We never felt pushed. . . Everyone was always really respectful of our wishes.
In summary, good palliative care was found to be co-led and co-planned with trusted health professionals. This care should be integrated, responsive and flexible. The hope is that research such as this, based on the lived experience of families, will both identify gaps as well as further inform evidence-based practice guidelines (such as the NICE one), and therefore improve the experience of care that children and their families experience.
While the study population was relatively small, the analysis of the interviews was robust and did delve into the themes deeply. The voice of parents using hospital palliative care and fathers were not as well represented in the sample. Also, there were no parents of children with cancer in this study.
We often ask the question: What is a “good death” in paediatrics? Any child death will be associated with profound sadness and grief. However, what we are trying to do is provide support and meaning to children and families during a very difficult time of their life. This article attempts to look at this question from the perspective of parents’ experiences and perspectives, through the lens of a national standard for paediatric palliative care.
We need to be able to provide individualised care, but ensure that there are consistent standards of care provided to all patients. The integration of well thought out PPC-specific quality measures into the day-to-day care of patients is one potential means of achieving the best care possible2. In my own context working in Australia, I am curious and inspired to further explore and begin to understand the experiences and views of Australian families and how these relates to the key standards that exist within my own jurisdiction2,3.
There might be process indicators of a good death (e.g. involvement of an inter-professional team to assess needs and guide management; development of a written symptom management plans) and outcome indicators (death in the location of choice). There may also be some measure of symptom assessment scores or quality of life4. Is this measured on the last day, week or final month of life? Perhaps another aspect of a “good death” and one that is very personal is that the preferences of the child and parents were respected. It can become complex when the clinicians may have different perspectives. For example, the parents’ preference was for the child to have ongoing disease related therapies at the end of life, to be intubated and receive mechanical ventilation. Some surveillance of decision-making processes may be helpful in this context. We hope we can accompany families, and support them in their decision making, so they have as few regrets as possible about the care their child received.
- National Institute for Health and Care Excellence (NICE). End of life care for infants, children and young people Quality standard [QS160]
- Palliative Care Australia 2018, National Palliative Care Standards 5th edn, PCA, Canberra.
- Australian Commission on Safety and Quality in Health Care 2016, National consensus statement: essential elements for safe and high-quality paediatric end-of-life care, ACSQHC, Sydney.
- Pastrana, T., Radbruch, L., Nauck, F., Höver, G., Fegg, M., Pestinger, M., Ross, J., Krumm, N., Ostgathe, C., (2010) Outcome indicators in palliative care–how to assess quality and success. Focus group and nominal group technique in Germany. Support Care Cancer, 18(7):859-68.