Perspectives on advance care planning in haematopoietic stem cell transplantation: a qualitative study

Abstract

Haematopoietic stem cell transplantation poses unique challenges for patients, families and clinicians when it comes to ACP. Introducing advance care planning as part of standard care and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset and when complications arise may assist patients and families in recognising how ACP can fit into and enhance their care.

Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers

“…The literature describes several barriers for accessing palliative care in pediatric oncology at the level of policy, the health system, organizations, and individual providers [27]. For individual providers, these barriers include a lack of knowledge, discomfort with speaking about death, cultural differences, and a lack of time or an established process to integrate palliative care services like ACP [27,28]. We found that HCPs valued all surveyed services of an SPCCS-team as highly important, underlining adopting the concept of palliative care as a holistic approach as stated in the WHO definition.…”

“…Therefore, we suggest an active approach for HSCT teams. Firstly, ACP skills should become routine [29,30] and ACP needs to be implemented in and supported by the organization [27,28]. Secondly, HSCT teams should consult the SPPCS from an earlier stage in the trajectory to work together to approach care from a multidisciplinary perspective [5,16,28,31].…”

“…Firstly, ACP skills should become routine [29,30] and ACP needs to be implemented in and supported by the organization [27,28]. Secondly, HSCT teams should consult the SPPCS from an earlier stage in the trajectory to work together to approach care from a multidisciplinary perspective [5,16,28,31]. Early palliative care integration in HSCT is previously described in the literature, suggesting a custom-made, integrative model combining intensive curative care with palliative care focused both on cure and increasing QoL [31].…”

Palliative sedation and medical assistance in dying: Distinctly different or simply semantics?

“…Certainly, MAiD has been in the media frequently as assisted dying legislation and policies have been debated in the public domain. Exploring the patient's goals and wishes for EOL is central to advance care planning and falls within the scope of nursing practice (Booker, Simon, Biondo, & Raffin Bouchal, 2018). The exception is when there has been experience with a family member or friend who has undergone PS.…”

“…The and family members (Bruinsma et al, 2013). Exploring the patient's goals and wishes for EOL is central to advance care planning and falls within the scope of nursing practice (Booker, Simon, Biondo, & Raffin Bouchal, 2018).…”