Pediatric advance care planning from the perspective of health care professionals: A qualitative interview study

Draft 1Lotz, J. D., Jox, R. J., Borasio, G. D., & Führer, M. (2014). Pediatric advance care planning from the perspective of health care professionals: A qualitative interview study. Palliative medicine, 0269216314552091.


Background: Pediatric advance care planning differs from the adult setting in several aspects, including patients’ diagnoses, minor age, and questionable capacity to consent. So far, research has largely neglected the professionals’ perspective.

Aim: We aimed to investigate the attitudes and needs of health care professionals with regard to pediatric advance care planning.

Design: This is a qualitative interview study with experts in pediatric end-of-life care. A qualitative content analysis was performed.

Setting/participants: We conducted 17 semi-structured interviews with health care professionals caring for severely ill children/adolescents, from different professions, care settings, and institutions.

Results: Perceived problems with pediatric advance care planning relate to professionals’ discomfort and uncertainty regarding end-of-life decisions and advance directives. Conflicts may arise between physicians and non-medical care providers because both avoid taking responsibility for treatment limitations according to a minor’s advance directive. Nevertheless, pediatric advance care planning is perceived as helpful by providing an action plan for everyone and ensuring that patient/parent wishes are respected. Important requirements for pediatric advance care planning were identified as follows: repeated discussions and shared decision-making with the family, a qualified facilitator who ensures continuity throughout the whole process, multi-professional conferences, as well as professional education on advance care planning.
Conclusion: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified. The results remain to be verified in a larger cohort of health care professionals. Future research should focus on developing and testing strategies for overcoming the existing barriers.

Read the free full text article from SAGE Open Access at the link here.

Top 10 Palliative and Supportive Care journal articles free to download

Cambridge Journals has offered complimentary access to the top ten most downloaded articles published in 2013 and 2014 in the journal: ‘Palliative and & Supportive Care’.


Article titles include:

  1. Early integration of palliative care in hospitals: A systematic review on methods, barriers, and outcome
  2. The experiences, coping mechanisms, and impact of death and dying on palliative medicine specialists
  3. Pain relief, spiritual needs, and family support: Three central areas in intercultural palliative care

All ten articles are available on the Cambridge Journals website and will be free to download until 28 February 2015…read more

From ehospice

Top ten research priorities for palliative and end of life care revealed

20082014“We hope that the results of this ground-breaking work will help focus researchers and funding bodies on the questions about palliative and end of life care that concerns patients, carers and clinicians the most, as well as demonstrates the need for increased funding in this under-researched area.”

Identifying the best ways of providing care and support to terminally ill people, their families and carers outside of ‘working hours’ has been rated the top priority for the future of palliative and end of life care research, according to a new report launched on 15 January.

A ‘top ten’ of unanswered questions in palliative and end of life care has been published by the Palliative and end of life care Priority Setting Partnership.

The Partnership’s final report was launched today at the Palliative and End of Life Care Research Summit and follows an extensive 18-month consultation, during which over 1,400 patients, carers and health and social care professionals helped determine the most important unanswered questions (i.e. gaps in existing evidence) that could improve overall care and experiences.

As well as research into how care can be provided outside of working hours, other top priorities include looking at how access to palliative care services can be improved for everyone, regardless of where they are in the UK, and what the benefits are of Advance Care Planning…read more

From ehospice

Developing Organizational Guidelines for the Prevention and Management of Suicide in Clients and Carers Receiving Palliative Care in Australia

O’Connor, M., Groom, J., Watson, M., & Harris, P. (2014). Developing Organizational Guidelines for the Prevention and Management of Suicide in Clients and Carers Receiving Palliative Care in Australia. American Journal of Hospice and Palliative Medicine, 1049909114565659.

This article describes the process of developing a suicide guideline in palliative care. Little literature was available, but utilizing the partnership model, a working party consulted with each discipline regarding specific requirements. The working party experienced significant challenges in creating policy that would adequately cover the diverse needs of all members of the palliative care team, as it was recognized that all staff needed guidance. The final guideline incorporated specific action plans for each discipline; mandatory training for all staff was endorsed through a recognized suicide alertness training program; advanced training in suicide intervention skills for key clinical staff will be required; and a “Rapid Plan Team” was recommended. This policy development has required significant work and the combined expertise of many disciplines.


Opioid Availability and Palliative Care in Nepal: Influence of an International Pain Policy Fellowship

Paudel, B. D., Ryan, K. M., Brown, M. S., Krakauer, E. L., Rajagopal, M. R., Maurer, M. A., & Cleary, J. F. (2014). Opioid Availability and Palliative Care in Nepal: Influence of an International Pain Policy Fellowship. Journal of pain and symptom management.


Globally, cancer incidence and mortality are increasing, and most of the burden is shifting to low- and middle-income countries (LMICs), where patients often present with late-stage disease and severe pain. Unfortunately, LMICs also face a disproportionate lack of access to pain-relieving medicines such as morphine, despite the medical and scientific literature that shows morphine to be effective to treat moderate and severe cancer pain. In 2008, an oncologist from Nepal, one of the poorest countries in the world, was selected to participate in the International Pain Policy Fellowship, a program to assist LMICs, to improve patient access to pain medicines. Following the World Health Organization public health model for development of pain relief and palliative care, the Fellow, working with colleagues and mentors, has achieved initial successes: three forms of oral morphine (syrup, immediate-release tablets, and sustained-release tablets) are now manufactured in the country; health-care practitioners are receiving training in the use of opioids for pain relief; and a new national palliative care association has developed a palliative care training curriculum. However, long-term implementation efforts, funding, and technical assistance by governments, philanthropic organizations, and international partners are necessary to ensure that pain relief and palliative care become accessible by all in need in Nepal and other LMICs.

Read the full text article here.

From Journal of Pain and Symptom management

Pediatric Palliative Care: Using Miniature Chairs to Facilitate Communication

Chin, L. E., Loong, L. C., Ngen, C. C., Beng, T. S., Shireen, C., Kuan, W. S., & Shaw, R. (2014). Pediatric Palliative Care Using Miniature Chairs to Facilitate Communication. American Journal of Hospice and Palliative Medicine, 1049909113509001.

Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting.