a. How telephone support groups create a compassionate space to enable expressions of grief and loss for people affected by cancer
Background: Cancer Council is a community funded organisation. One of its priorities is to empower and support people affected by cancer, so that no one need face cancer alone. The Telephone Support Group (TSG) program is one of the peer support programs, designed to address this priority. Research is clear that participation in a support group is beneficial for people affected by cancer. This includes people with a cancer diagnosis, carers and people who are bereaved1. Aims: The TSG Program objective is to bring together people with metastatic and poor prognosis cancers, carers and those who are bereaved, to provide them with a safe compassionate place to connect, share thoughts and fears about end of life and to explore grief and bereavement. Actions: The TSG Program utilises a Mutual Aid/Peer Support model. Facilitators are trained health professionals, acknowledged as providing positive benefits to participants2. The facilitator role is to provide a safe and trusting place for participants to speak about managing their disease and facing end of life. Patient groups and Carer groups are held twice monthly. Bereavement groups are a six-session closed format. This program connects people, at no cost to them, who live in isolation or rural and remote Australia. They just need access to, landline or mobile telephone. Outcomes: Monitoring is ongoing and consists of measuring the day to day activities of the program, ensuring accountability. Quantitative and qualitative form data is collected through surveys, open ended questions and/or interviews. Conclusion: Psychosocial and emotional benefits are gained and normalised through participants talking in a safe space about the realities of end of life. Participants learn the practicalities of managing their disease, treatments and relationships. Cancer Council has a unique opportunity to create this space to enable participants to feel heard and supported while exploring their grief. Footnotes: 1.Ussher, Jane, et al. (2006). What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Social Science & Medicine, 62, 2565-2576 2.Dunn, J., et al (2003). A review of peer support in the context of cancer. Journal of Psychosocial Oncology, 21, 55-67
b. The Belgian model of demand-drive palliative care (PC) with embedded assisted dying (AD)
At this time 250 million people live in jurisdictions having de-penalised AD. In AD-permissive environments PC organisations have three options: exclude AD from PC, leave involvement in AD to individual caregivers’ conscience, or, as in Belgium, embed AD in PC. Individual caregivers must always be free to decline engaging in AD. However, public-health issues arise if in AD-permissive environments PC excludes AD. 1) Intellectually, some of the essentialistic objections to AD embedded in PC are problematic. Eg. the historical origins of PC and definitions of PC by intention not to delay or hasten death can hardly be canonical, if only because history evolves and intention is a poor criterion. Ethically, the PC tenet of compassionate patient-centredness is overruled when caregivers prioritise personal or doctrinal values over the patient’s. 2) Empirically, over 70% of cases of AD are preceded by professional PC. In Flanders, AD occurs three times more after a professional PC trajectory than after non-specialised end-of-life (EOL) care. The Belgian model of ‘integral EOL care’ consists of legally ordained, demand–driven universal access to both PC and AD. This model was in 2015 largely emulated in Québec’s comprehensive end-of-life care bill. Pragmatically, if in AD-permissive jurisdictions AD is excluded from PC and performed only in settings that are less competent for EOL care, this may entail adverse public-health consequences. First, patients who desire the possibility of AD may tend to shun professional PC and hence not receive optimal EOL care. Second, AD would likely be less practiced in a spirit of ‘total care’. Thus, the quality of all EOL care would stand to decline. Conclusion: If PC organisations do not with open minds confront these ethical and practical issues, they may be marginalised by societal developments and the overall quality of EOL care may suffer.
c. Sound therapy as an effective option for the needs of the palliative care patient
Background Sound Therapy, developed by ear specialist Dr Tomatis, assists hearing, sleep, stress, mood, anxiety, pain, and general wellbeing (Tomatis, 1991). Classical music is progressively filtered using specific algorithms to activate the auditory system and enhance brain plasticity. The patient then listens to the filtered and activated sounds through headphones. Aims This preliminary study aims to review existing literature and case studies on how Sound Therapy can be used to assist people at the end of life. Actions A review of 111 papers on Tomatis Sound Therapy identified 3 which addressed degenerative illness and 6 on anxiety which were reviewed in detail. From my own service, over 100 statements will be analysed from people with degenerative illness or frail ageing who have used a portable, home-based version of Sound Therapy. Outcomes The literature review provided evidence for the effectiveness of Sound Therapy for degenerative illness. Examples included relief of chronic pain, reduced stress, an improvement in the quality of sleep and enhancement of cognitive function (Jinjing 2016). Recent understanding of the vagal nerve (Porges, 2011) provided an up to date neurophysiological explanation for these beneficial effects. Analysis of individual cases is still in progress but evidence suggests that home-based Sound Therapy provides a simple, treatment which can help to meet emotional needs of dying persons, while requiring minimal time and input from carers. Conclusions and application to PHPC: At end of life most people are cared for in their homes and indeed would like to die at home. Sound therapy can assist with emotional support which makes home-based caring easier for both the person who is dying and the carer.
d. When saving lives is your business: Preparing paramedics for situations where resuscitation is unsuccessful, unwarranted or unwanted
Background: It is increasingly recognised that resuscitation efforts are sometimes unwanted or inappropriate, and often unsuccessful. NZ paramedics are authorised to withhold or terminate resuscitation in accordance with guidelines, then formally verify death. Research to-date has focussed on optimising survival from cardiac arrest and little is known about the experience of paramedics, family or other bystanders when resuscitation efforts are withheld or terminated. Aims: To explore paramedics’ experiences of withholding or terminating resuscitation and implications from a public health palliative care perspective. Design: A mixed-methods sequential exploratory research project including a systematic review of the literature, interviews with ambulance personnel, focus groups with clinical and peer support staff and an online survey of graduating paramedic students. Results: Paramedics respond rapidly to patients with life-threatening conditions, and ‘default’ to highly-rehearsed resuscitation efforts when attending a patient in cardiac arrest. Patient death can be emotionally, clinically and ethically challenging – even for highly-experienced paramedics. They can feel pressured by family members and bystanders who have called an ambulance expecting or even demanding resuscitation efforts – and success. Patients may not have discussed or documented their wishes, and family members can be unprepared for their death, even where there was significant evidence of life-limiting illness. Implications: Increasingly prepared by degree-based education, paramedics are trained to save lives and manage illness and injury. They are also key providers of care to patients dying in the community, often tasked with breaking bad news to family and supporting those involved in unsuccessful resuscitation efforts. With promotion of bystander CPR and public access to defibrillators, members of the public may also ‘default’ to commencing resuscitation efforts, with an expectation these will revive the patient. Greater public awareness of the limitations of resuscitation and availability of documented patient wishes in the context of expected death could facilitate paramedic resuscitation decision-making.When saving lives is your business: Preparing paramedics for situations where resuscitation is unsuccessful, unwarranted or unwanted