This summer 2019 Professor Holly Nelson-Becker was awarded a Ralph and Eve Seelye Charitable Trust Fellowship to share her knowledge in an exchange with the University of Auckland School of Nursing, Faculty of Medical and Health Sciences and the Te Arai Palliative Care Research unit, as well as the Faculty of Education and Social Work.
Visiting Seelye Fellowships are awarded to outstanding academics and other leading authorities who are deemed to be eminent scholars in their chosen areas and use the grant to share their knowledge.
Prof Nelson-Becker is a gerontological social worker. Her areas of research, writing, and teaching have addressed end-of-life and palliative care as well as spirituality. She gave 13 presentations at a variety of venues including departments at the University of Auckland, hospitals, hospices and an evening public presentation, the Te Arai seminar. A link for that presentation follows at the end of this discussion.
Key messages, many addressed in her 2018 book, Spirituality, Religion, and Aging: Illuminations for Therapeutic Practice are the following:
- We need to better integrate our dying with our living, rather than assume we are not mortal. Failure to think about and plan for our deaths can leave families in disarray, confused, and distressed, especially when there are disagreements about the need for aggressive care. Beginning conversations early and planning end-of-life preferences is urgent and valuable.
- There is a critical need for advance care planning with many different groups of people regarding their wishes at life's end. This includes marginalised population groups. One finding from Prof. Nelson-Becker’s research with homeless older adults was that they would like their physician to be their decision maker since they were often alienated from family.
- Breaking through fear to speak about death and normalise it is important in the larger society and can help people move through and heal from loss and grief. Through death, survivors lose the present relationship and attachment with someone they love. The person who is dying also loses everyone and everything they have known or loved. They too, experience a need to grieve when they enter a dying trajectory and death is not sudden.
- We would do well in our discussions about the dying trajectory to ask people about their specific preferences, for example whether people want to be touched or not, listen to music or not. Whether they prefer to be accompanied in their dying or die alone, which may be different from lonely dying, can be helpful to know.
- Spirituality is an under addressed area in healthcare. Research shows that in goals of care conversations, most discussion of spiritual supports--where it occurred-was initiated by surrogate decision makers and that physicians tended to redirect or refer, only sometimes empathise, and seldom seek to know more about the relevance of personal spiritual beliefs (Ernecoff et al., 2015). Many professionals need further training on assessment of spiritual care needs.
In New Zealand about 44% of the population is Christian and another roughly 6% endorse various world religions; 40% of the population report no affiliation with religion according to world surveys on religion (Association of Religion Data Archives, 2015). The recent census may show further decrease in religious preferences. Since there seem to be cohort differences in endorsement of levels of spirituality and religion with younger with younger people tending to greater interest in spirituality, this may hide a large number of people that would benefit from spiritual support. We cannot assume that those reporting no affiliation with religion also would have no interest in spirituality. Further the spiritual interests people carry are highly fluid and may change along religious and spiritual spectrums throughout life.
Discussions of religion and spirituality have tended to be marginalised in society at large, partly because of concerns about possible misdirection of conversations around proselytization. A consequence of this has been minimisation of the value of spiritual strengths and a failure to address the nature of spiritual struggles. This kind of psychosocial spiritual pain at times may be as bad as or worse than physical pain. Where people think that a conversation will not be supported and they cannot be heard and accepted, they may not ask for help. This suggests that there are many unexpressed and unmet needs at the end of life around spiritual care, including spiritual and existential doubts about life meaning and purpose.
The following presentations were given by Prof. Nelson-Becker:
- 1st August U. of Auckland Epsom campus, Faculty of Education and Social Work-Spiritual identity and mindfulness in social work practice: Building holistic relationships with clients
- 2nd August U. of Auckland, Medical and Health professions-nursing-Spiritually sensitive practice at end of life
- 5th August- North Shore Hibiscus Hospice-2 presentations-Voices of older adults: Needs at Life’s end & Working across boundaries: Creating effective transdisciplinary pathways for compassionate care
- 6th August-North Shore Hospital-Hospitals, healing and the health care professional: Addressing spirituality in palliative care
- 6th August-Te Arai Seminar-Working across boundaries: Creating effective transdisciplinary pathways for compassionate care
- 12th August Waiora Waikato Hospital, Hamilton, NZ Voices of older adults: Needs at life’s end
- 14th August-Auckland City Hospital- Hospitals, healing and the health care professional: Addressing spirituality in palliative care
- 14th August- Mercy Hospice-Spiritually sensitive practice at the end of life
- 15 August- Selwyn Conference- 3 workshops: Creating spiritually sensitive contexts in healthcare, Voices of older adults: Needs at life’s end, Working with grief
- 16 August Selwyn Conference Keynote: Journey, experience and development guidelines for ageing and spirituality
The Te Arai seminar-Working Across Boundaries presentation discussing interprofessional care is available at the link below:
https://tearairesearchgroup.org/2019/08/27/working-across-boundaries/.
Dr. Rosemary Frey, a Senior Research Fellow in the School of Nursing, and Professor Christa Fouche, Associate Deputy VC Research at the University of Auckland, nominated Prof Nelson-Becker for this award. Dr. Tess Moeke-Maxwell led the Pae Herenga study to gather over 60 stories and to create 16 digital stories to develop a deeper understanding of Māori end-of-life traditions. Professor Nelson-Becker was invited as a special guest by the Te Ārai Kaumātua (elders) advisory group for the study and attended a marae.
Reported by:
Professor Holly Nelson-Becker
+44 (0)1895 267935
Holly.Nelson-Becker@brunel.ac.uk