Is opioid addiction a problem in Palliative Care? Definitions, assessment and clinical implications

Only 78 days to #EAPC2020 … The 11th World Research Congress of the European Association for Palliative Care which,  for the first time ever, will take place online with interactive online sessions 7 to 9 October 2020 and on-demand content available from 21 September.

Ahead of the congress, we’re delighted to give some highlights of what’s in store at #EAPC2020. Today, Professor Eduardo Bruera, MD, Chair, Department of Palliative, Rehabilitation, & Integrative Medicine at UT MD Anderson Cancer Center, Houston, Texas, gives a glimpse of the plenary lecture he will give at the congress followed by a live panel discussion.

Professor Eduardo Bruera.

Opioids are the most important drugs for the management of pain in palliative care patients. Opioids are mainly agonists of the mu receptor along nociceptive pathways and by that mechanism they reduce afferent input into the somatosensory cortex.

Unfortunately, these very old drugs (between 60 and 220 years old) are not targeted to the nociceptive pathway. (1) Opioids bind to mu receptors in multiple other areas of the brain, including the limbic system resulting in reward and reduced distress. A number of studies have found that a substantial minority of cancer patients receiving opioids for pain control develop behaviours consistent with non-medical opioid use (NMOU). These behaviours range in severity, from occasionally using more opioids than prescribed to obtaining prescriptions from multiple sources, buying street drugs, or diverting their opioid prescriptions. (2)

The underlying diagnosis for NMOU behaviours ranges from coping chemically with the distress of cancer to severe opioid use disorders. (2)

Several studies have found that some cancer patients are at a higher risk for developing NMOU: Positive screening in tests for alcohol/drugs, history of smoking, younger age, and male gender are independent predictors of higher risk for NMOU. (3)

Unfortunately, there are no reliable clinical or demographic predictors for NMOU. A practical, clinical approach includes ‘universal precautions’ with screening for risk factors before prescribing opioids for pain or dyspnea. Patients with low risk receive regular follow-up and those with increased risk (approximately 20 per cent) undergo more frequent follow-up and more intense opioid use education. All patients undergo regular monitoring and those who are diagnosed as having NMOU behaviour require a more specialised interdisciplinary palliative care management. This management has been found to successfully decrease NMOU and keep adherence to the team. (4)

More research is needed on better screening tools and management of palliative care patients with NMOU. Better analgesics, capable of much more specific reduction of spinothalamic nociceptive input without limbic system binding, are needed to replace the obsolete semisynthetic and synthetic opioids currently available. However, several promising target substances have been discarded so far due to safety concerns.


Join Professor Eduardo Bruera for his plenary presentation and live panel discussion, which will be one of the interactive online sessions during 7-9 October. Keep up to date at https://eapcresearchcongress2020.eu/

Prof Bruera’s lecture, Is opioid addiction a problem in Palliative Care? Definitions, assessment and clinical implications, will also be recorded and released for on-demand viewing by registered delegates until January 2021. Read the abstract of his lecture, and all other congress presentations and posters, in the Book of Abstracts for the 11th EAPC World Research Congress, to be published by ‘Palliative Medicine’ – available online from 21 September until January 2021.

References

1. Dalal S, Bruera E. Pain Management for Patients With Advanced Cancer in the Opioid Epidemic Era. Am Soc Clin Oncol Educ Book. 2019 Jan; 39:24-35. doi: 10.1200/EDBK_100020. Epub 2019 May 17. Review. PMID: 31099619.  Free Article

2. Arthur J, Bruera E. Balancing opioid analgesia with the risk of nonmedical opioid use in patients with cancer.Nat Rev Clin Oncol. 2019 Apr; 16(4):213-226. doi: 10.1038/s41571-018-0143-7. Review. PMID:30514978

3. Yennurajalingam, S. et al. Predicting the risk for aberrant opioid use behavior in patients receiving outpatient supportive care consultation at a comprehensive cancer center. Cancer 124, 3942–3949 (2018).

4. Arthur, J. et al. Outcomes of a specialized interdisciplinary approach for patients with cancer with aberrant opioid-related behavior. Oncologist 23, 263–270 (2017).

Links

JOIN PALLIATIVE CARE SPECIALISTS FROM ACROSS THE WORLD AT #EAPC2020 –11thEAPC WORLD RESEARCH CONGRESS ONLINE 2020 – Interactive online sessions 7 to 9 October 2020 with on-demand content available from 21 September. Be a part of the first-ever EAPC World Research Congress Online. Learn and interact with leading researchers and chat with other registered delegates from the global palliative care community – all in the safety of your own home or office.

LATE-BREAKING ABSTRACTS… Share your experience of COVID-19 and the Palliative Care Response. More information and how to submit your abstract here. Deadline: 31 July 2020.

Posted in 11th EAPC World Research Congress Online, EAPC World Research Congresses, RESEARCH | Tagged | Leave a comment

Free Online Undergraduate Medical Education in Palliative Care – the EDUPALL Experience

FOR THREE DAYS NEXT WEEK, EDUPALL IS OFFERING A SERIES OF FREE WEBINARS WITH LEADING PALLIATIVE CARE CLINICIANS AND TEACHERS

Daniela Mosoiu, Associate Professor at Transilvania University, Faculty of Medicine, Brasov, Romania, and EDUPALL Project Director, explains more about the EDUPALL Erasmus project.


Dr Daniela Mosoiu

Dr Daniela Mosoiu.

We are delighted to present a series of free webinars based on The EDUPALL Erasmus project.  A group of international experts from Romania, Ireland, Germany, Belgium, Austria, UK and Spain had originally produced a ‘blended’ (combining  online educational materials with traditional place-based classroom methods) palliative care curriculum for medical students. The curriculum was based on the European Association for Palliative Care (EAPC) recommendations and we had prepared all of the accompanying materials needed to deliver this novel programme.

We finalised the curriculum and trainers’ toolkit before the COVID-19 outbreak, and we had the challenging task to implement it during COVID lockdown. The fact that the curriculum was from the beginning designed in a blended format was extremely useful; we had to adapt to the new social reality and the seminars that were supposed to be developed in face-to-face format were transferred to online seminars. We assessed students’ performances and sought their opinion on the process.  Now, we would like to share the EDUPALL experience with all of those interested in education through this series of webinars. Each webinar will last for one hour and will be in English.

We hope through the webinars to foster further discussion on education in palliative care in these challenging times and to discuss opportunities for the use of the EDUPALL curriculum in other countries. EDUPALL is freely available; it has been designed based on the EAPC recommendations and is endorsed by the EAPC Board of Directors. Having already been tested, we are confident that the EDUPALL curriculum will foster creative thinking about new teaching methods for palliative care and ways to assess performance.

If you have any questions please email us here.  Take a look below at the speakers and content we’ve lined up for next week’s webinars – we hope to meet you online next week!

Tuesday 21 July at 5 pm CET  – Webinar I – To register click here.
Curriculum building and mentoring in undergraduate palliative care education
Moderator: Dr Julie Ling, CEO EAPC

  • ‘The EDUPALL curriculum development – process and content’
    Daniela Mosoiu, Associate Professor, Transilvania University, Romania.
  • ‘Developing a mentoring programme in palliative care in undergraduate education’
    Stephen Mason, PhDPGC HE BA (Hons) The University of Liverpool, UK:

Wednesday 22 July at 5pm CET – Webinar II – To register click here
Novel teaching methods for palliative care education
Moderator: Frank Elsner, Professor, Universitätsklinikum Aachen, Germany

  • ‘Pivoting to Virtual Learning in Canada’
    José Pereira, Professor and Director, Division of Palliative Care, Department of Family Medicine, McMaster University, Hamilton, Canada.
  • ‘Visual art in teaching’
    Antonio Noguera, Assistant Professor, Atlantes Research Program, Institute for Culture and Society of the University of Navarra, Spain.
  • Patients as Teachers’
    Frank Elsner, Professor, Universitätsklinikum Aachen, Germany.
  •  ‘Palliative Care in stage: Neural pain pathways by drama’
    Dr Mhoira Leng, Cairdeas International Palliative Care Trust; Makerere University, Uganda.
  • ‘Bus rounds – Patients at home’
    Dr. med. Dipl. Soz. Tania Pastrana, Universitätsklinikum Aachen, Germany.

Thursday 23 July at 5pm CET – Webinar III – To register click here
Performance assessment in palliative care education
Moderator: Dr Cathy Payne, AIIHPC (All-Ireland Institute of Hospice and Palliative Care), Ireland.

  • ‘How to measure performance in education’
    Dr Piret Paal, WHO Collaborating Centre, Institute of Nursing Science and Practice, Paracelsus Medical University in Salzburg, Austria.
  • ‘Students’ feedback and perception regarding their experience during completing palliative care module’
    Assoc. Prof. Dr. Vlad Poroch, University of Medicine and Pharmacy of Iasi, Romania.

For any questions regarding EDUPALL webinars, please email us here. All webinars last one hour and are in English.


More about the author…
Daniela Mosoiu is Associate Professor at Transilvania University, Faculty of Medicine, Brasov, where she teaches palliative care to medical students and leads the multidisciplinary Palliative Care Master’s degree course; National Coordinator for Specialized Palliative Care Training in Romania, Director of Education and National Development at Hospice Casa Sperantei and a member of the European Association for Palliative Care Board of Directors.

Visit the EDUPALL  website for more information including curriculum, online course and trainers’ toolkit. 

Posted in EDUCATION & TRAINING | Tagged | Leave a comment

Abstract Watch: Palliative and end-of-life care in the context of the COVID-19 pandemic

Barry R Ashpole is a Communications Consultant, Educator and Media Specialist from Ontario, Canada, who contributes a bi-annual post for the blog. Here, he presents a selection of articles that focus on the provision and delivery of palliative and end-of-life care in the context of the COVID-19 pandemic – all with links to full-text articles to view or download.


Statue of Guanyin

Kong Meng San Ohor Kark See Buddhist Monastery, Singapore – Barry is in front of the statue of Guanyin, revered by Buddhists as the Goddess of Mercy.

‘Recommendations to leverage the palliative nursing role during COVID-19 and future public health crises,’ Journal of Hospice & Palliative Nursing| Online – 5 June 2020 –Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. The authors provide recommendations for palliative nurses and other healthcare stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19. Full text (click on pdf icon) 

‘Integration of palliative care into COVID-19 pandemic planning,’ BMJ Supportive & Palliative Care| Online – 9 June 2020 – The COVID-19 pandemic is expected to surpass the healthcare system’s capacity to provide intensive care to all patients who deteriorate as a result of the disease. In this review, the authors describe some of the important palliative care (PC) considerations that need to be incorporated into COVID-19 pandemic planning. The main aspects to be considered include decision algorithms for rationing care, training on effective symptoms management, alternative delivery methods of PC services such as telemedicine and finally death and bereavement support for surviving family members who are likely to be isolated from their loved one at the moment of death. Full text.

‘Clinical uncertainty and Covid-19: Embrace the questions and find solutions,’ Palliative Medicine| Online – 10 June 2020 –The one thing we know with certainty about the Covid-19 pandemic, which has arrived in all our lives with devastating force, is how troubling uncertainty associated with this disease can be. A non-exhaustive list of the uncertainties associated with Covid-19 includes uncertainty at the level of the disease and its management, including its prognosis; how health and social care systems and professionals who work within them should respond; how best to communicate with the public and impart information about the illness; and, of central importance, how patients and their families live alongside the “known unknowns” and “unknown unknowns.” Full text

‘The role and response of palliative care and hospice services in epidemics and pandemics: A rapid review to inform practice during the COVID-19 pandemic,’ Journal of Pain & Symptom Management| Online – 8 April 2020 – Hospice and palliative care services have an essential role in the response to COVID-19 by: 1) Responding rapidly and flexibly; 2) Ensuring protocols for symptom management are available, and training non-specialists in their use; 3) Being involved in triage; 4) Considering shifting resources into the community; 5) Considering redeploying volunteers to provide psychosocial and bereavement care; 6) Facilitating camaraderie among staff and adopt measures to deal with stress; 7) Using technology to communicate with patients and carers; and, 8) Adopting standardised data collection systems to inform operational changes and improve care. Full text

‘Pandemic palliative care: Beyond ventilators and saving lives’
Canadian Medical Association Journal, 2020;192(15):E400-E404. Previous mass casualty events have taught us much about how best to triage patients requiring care, and some of this work can be adapted to palliative care (PC); but little has been written on how to manage those who are not offered life-sustaining measures. The authors advise acting now to stockpile medications and supplies used in PC, train staff to meet PC needs, optimize our space, refine our systems, alleviate the effects of separation, have critical conversations and focus on marginalized populations to ensure that all patients are cared for equitably. The SARS-CoV-2 pandemic has been tragic for many people worldwide. Full text.

‘What should palliative care’s response be to the COVID-19 epidemic?’ Journal of Pain & Symptom Management| Online – 27 March 2020 –Widespread transmission of COVID-19 in the U.S. could translate into large numbers of people needing medical care at the same time. This will push many health systems to the point of rationing limited resources such as ICU beds and life sustaining machinery, as has occurred in Italy. Patients and their families at the peak of the pandemic will face symptoms, emotional distress, and decision-making in the face of uncertainty and limited options. No one is more prepared to handle these needs than providers on palliative care (PC) consult teams. However, PC consult teams are themselves a limited resource. Full text.

Clinical Practice/Toolkits

‘Development of a palliative care toolkit for the COVID-19 pandemic,’ Journal of Pain & Symptom Management, published online 23 May 2020. A workgroup of interdisciplinary palliative care clinicians developed the toolkit, consisting of a detailed chapter in a COVID-19 online resource, a mobile and desktop web application, one-page guides, pocket cards and communication skills training videos. Full text

‘Development and implementation of a clinician-facing prognostic communication tool for patients with COVID-19 and critical illness,’ Journal of Pain & Symptom Management, published online 10 May 2020. The authors have developed and implemented a point-of-care prognostic communication tool for clinicians caring for critically ill patients with COVID-19. Full text.

‘Rapid de-escalation and triaging patients in community-based palliative care,’ Journal of Pain & Symptom Management, published online 7 April 2020. This article details recommendations by the Palo Alto Medical Foundation Palliative Care & Support Services team to help triage and coordinate for timely, safe, and effective palliative care in the community and outpatient setting during the ongoing COVID-19 pandemic. Full text.

ICU/Emergency Department

‘Proactive identification of palliative care needs among patients with COVID-19 in the ICU,’ Journal of Pain & Symptom Management, published online 13 June 2020. Given the potentially prolonged duration of the pandemic and the possibility of future patient surges, PC teams should consider implementing a process of proactive screening and outreach to settings in their hospital with high need. Full text.

‘Compassionate communication and end-of-life care for critically ill patients with SARS-Cov-2 infectio,’ Journal of Clinical Ethics, 2020;31(2):RP97-RP-99. This article describes the experiences of clinicians in ICUs in the south of Spain in the hope it will serve to improve the conditions in which these patients die, and to help their families who suffer when they cannot say goodbye to their loved ones. Full text

‘Best case/Worst case: ICU (COVID-19) – A tool to communicate with families of critically ill patients with COVID-19,’ Palliative Medicine Reports, published online 30 April 2020. Palliative care clinicians were asked to bridge a gap in communication between patients’ families and critical care teams, as bedside demands overwhelmed the critical care team’s capacity to provide consistent communication with family. Full text.

Telehealth/Telemedicine

‘Webside manner during the COVID-19 pandemic: Maintaining human connection during virtual visits,’ Journal of Palliative Medicine, published online 11 June 2020. As the death rate numbers related to COVID-19 are in the tens of thousands, clinicians are increasingly tasked with having serious illness conversations.. The authors identify key elements of webside manner helpful when conducting such conversations by virtual visit. Full text

‘Feasibility and acceptability of inpatient palliative care e-family meetings during COVID-19 pandemic,’ Journal of Pain & Symptom Management, published online 4 June 2020. Family meetings likely happened sooner and with far more participants than would have been possible without the use of the technology. While providers expressed limitations in the use of technology, they reported key benefits. Full text

‘National outreach of telepalliative medicine volunteers for a New York City safety net system COVID-19 pandemic response,’ Journal of Pain & Symptom Management, published online 29 May 2020. To the authors’ knowledge, this is the first model to leverage external telepalliative medicine volunteers from across the country for an institutional COVID-19 pandemic response. Full text.  

‘Can video consultations replace face-to-face interviews? Palliative medicine and the COVID-19 pandemic: Rapid review,’ BMJ Supportive & Palliative Care, published online 26 May 2020. While video consultations for palliative care in the U.K. will be a radical change in service delivery, the international evidence appears to support it as effective, accessible, acceptable and cost-effective. Full text. 

‘Rapid implementation of inpatient telepalliative medicine consultations during COVID-19 pandemic,’ Journal of Pain & Symptom Management, published online 10 April 2020. As we plan for decreased provider availability due to quarantine and redeployment and seek to reach increasingly isolated hospitalized patients in the face of COVID-19, the need for telepalliative medicine in the inpatient setting is now clear. Full text.  

Long-Term Care, Nursing & Residential Homes

‘International COVID-19 palliative care guidance for nursing homes leaves key themes unaddressed,’ Journal of Pain & Symptom Management, published online 10 May 202. Essential aspects not fully addressed include: holistic symptom assessment and management at end of life, staff training regarding communication, decision-making and comfort for dying residents, referral to specialist palliative care or hospice, etc., etc. Full text

Paediatric Palliative Care

‘Talking to children about illness and death of a loved one during the COVID-19 pandemic,’ The Lancet Child & Adolescence Health, published online 4 June 2020. In the midst of the devastating death toll and hospitalisations from COVID-19, the psychological effect of this unfolding pandemic on children has been unconscionably overlooked, magnified when someone in the family is hospitalised for or dies from COVID-19. Full text

‘Pediatric palliative care in a pandemic: Role obligations, moral distress, and the care you can give,’ Pediatrics, published online 26 May 2020. The authors present two cases that highlight two different sorts of ethical issues. Both raise challenges for caregivers who are trying to be honest, to deal with their own moral distress, and to provide compassionate palliative care. Full text (click on pdf icon). 

‘A virtual children’s hospice in response to COVID-19: The Scottish experience,’ Journal of Pain & Symptom Management, published online 13 May 2020. Although Children’s Hospices Across Scotland was strategically planning to implement telehospice, COVID-19 accelerated the process. Senior leadership team systematically evaluated its clinical and wrap-around services and rapidly migrated them to a virtual environment. Full text.  

‘Applying palliative care principles to communicate with children about COVID-19,’ Journal of Pain & Symptom Management, published online 31 March 2020. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community-building, recognition of death as a part of the lifecycle, and legacy. Full text

Vulnerable Populations

‘The crucial role of nurses and social workers in initiating end-of-life communication to reduce overtreatment in the midst of the COVID-19 pandemic,’ Gerontology, published online 9 June 2020. The COVID-19 epidemic has placed an extraordinary burden on health systems worldwide and reignited awareness of the need for hastier decision-making near the end of life. Full text

‘LGBTQ+ inclusive palliative care in the context of COVID-19: Pragmatic recommendations for clinicians,’ Journal of Pain & Symptom Management, published online 10 May 2020. Although care for LGBTQ+ individuals is no different and requires careful consideration, there is a concerning literature gap related to the health and palliative care of these populations in this context. Full text.

‘The family caregiving crisis meets an actual pandemic,’ Journal of Pain & Symptom Management, published online 10 April 2020. The unprecedented growth in numbers and needs of older adults with serious illness has already necessitated widespread changes in the healthcare system to support caregiving families. The COVID-19 pandemic brings to light how reliant we are on families to support each other during illness. Full text

Advance Care Planning, Advance Medical Directives & Goals-of-Care

‘Reassessing advance care planning in the light of COVID-19,’ British Medical Journal, published on 18 May 2020. Older people and those with frailty are more likely to die from acute infections, such as COVID-19. This has prompted calls internationally for advance care planning in these vulnerable populations, focusing on documenting individuals’ preferences for resuscitation and hospital admission. Full text

‘COVID-19: Don’t apply advance care plans to groups of people, doctors’ leaders warn,’ British Medical Journal, published online 6 April 2020. The joint statement from the Royal College of General Practitioners, British Medical Association, Care Provider Alliance, and Care Quality Commission comes amid concern that GPs are feeling under pressure not to admit their older vulnerable patients to hospital if they contract COVID-19.1Full text

  1. ‘Joint Statement on Advance Care Planning,’ Royal College of General Practitioners, 1 April 2020. Download/view here

‘Goals-of-care in a pandemic: Our experience and recommendations,’ Journal of Pain & Symptom Management, published online 31 March 2020. The authors propose the palliative care team response will occur in two waves: first communication, and second symptom management. Their experience with discussing goals-of-care with the family of a COVID positive patient highlights some expected and unexpected challenges. Full text

Grief & Bereavement

‘Bereavement in the time of Coronavirus: Unprecedented challenges demand novel interventions,’ Journal of Aging & Social Policy, published online 18 May 2020. Persons dying of the virus spend their final days in hospitals and nursing facilities, separated from their families. Their bereaved kin must mourn the loss without the comforting embrace of loved ones. Full text

‘Caring for bereaved family members during the COVID-19 pandemic: Before and after the death of a patient,’ Journal of Pain & Symptom Management, published online 7 May 2020. Given the current COVID-19 pandemic, there is an urgency from a public health perspective to expand bereavement services in an attempt to mitigate poor bereavement outcomes, including prolonged grief disorder, other psychiatric disorders. Full text

‘Bereavement support on the frontline of COVID-19: Recommendations for hospital clinicians,’ Journal of Pain & Symptom Management, published online 3 May 2020. The authors provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. They recommend an organisational and systemic approach, accessing informal and professional support. Full text

‘Grief during the COVID-19 pandemic: Considerations for palliative care providers,’ Journal of Pain & Symptom Management, published online 13 April 2020. The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. The authors describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Full text


Barry Ashpole

Barry R Ashpole.

More about the author
Barry R Ashpole is a Communications Consultant, Educator and Media Specialist. He publishes Media Watch, a weekly compilation of international articles and reports in the fields of healthcare, social services, ethics and law. Barry also teaches frontline care providers about different aspects of palliative care and facilitates workshops on care planning. You can access Media Watch on the International Palliative Care Resources Center website.

You can read earlier editions of Abstract Watch on the EAPC blog.

Posted in ABSTRACT WATCH, Coronavirus and palliative care, PATIENT & FAMILY CARE | Tagged , , | Leave a comment

Caregiving at the margins in palliative care

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM ‘PALLIATIVE MEDICINE’, THE OFFICIAL RESEARCH JOURNAL OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE (EAPC)

Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer Open Access  article in ‘Palliative Medicine’, or EAPC members can access a free copy from the EAPC website.

Today, Ashley Mollison, a PhD student, and Kelli Stajduhar, a professor of nursing, both from University of Victoria, Canada, give the background to their longer article selected as Editor’s Choice in the July issue of ‘Palliative Medicine’ …


Ashley Mollison (left) and Kelli Stajduhar. Photo: UVic Photo Services.

Healthcare systems in the global north rely heavily on the informal work of family caregivers. While research on family caregiving in palliative care exists, most has occurred with caregivers who are housed, middle class, white, and who have networks of social support to draw on. In our recent Palliative Medicine article, we report on the experiences of a less visible group of ‘family’ caregivers – those who provide care and support for people positioned as structurally vulnerable – those living in poverty, vulnerably housed, racialised, and experiencing discrimination because of mental health and substance use issues.

Like much of the research on family caregiving, our findings suggest there are deleterious effects on physical and emotional wellbeing. Our study also reveals that while ‘family’ caregivers play pivotal roles in providing end-of-life care for structurally vulnerable populations, ‘who’ these family caregivers are, and their experiences differ from much of what has previously been published. In our study, family caregivers were themselves experiencing structural vulnerabilities – and sometimes even on a palliative trajectory – resulting in significant inequities and challenges in access to support and ability to provide care.

Poverty and unstable housing was an overarching factor shaping caregiving experiences, contributing significant stress to the already high demands of caregiving at end of life. While some were making the decision between paying rent and buying food, others were squeaking by on low income from precarious employment, ineligible for ‘paid’ leave.

Caregivers faced barriers related to poverty, homelessness and substance use related stigma. Not all caregivers used substances, but those who did found themselves using more to cope with the toll of caregiving. Others faced discrimination trying to access needed pain medications for their loved ones – the assumption being that drugs would be diverted for the caregivers’ use. Due to stigma and discrimination, their capacity to fulfil a caregiving role was significantly hampered, restricting opportunities to give care or facilitate an individual’s request to be cared for and die ‘at home’.

Dying at home was not a possibility for many of our participants. There was often a lack of safe, secure and stable housing where care could be provided. The places where people lived (e.g., shelters, transitional and supportive housing) were often deemed ‘unsafe’ for home care services to assist and support caregivers in their role. Declining physical health and greater care needs actually increased care recipients’ risk of being evicted and losing their sheltered, transitional, or supportive housing. Restrictive guest and co-habitation policies prevented caregivers from living with, staying over, or spending time with their loved ones.

Complex relational tensions were also found to exist. Caregivers commonly shared how they were forced to delicately navigate issues of power, trust and control, particularly over decision-making within the caregiver/recipient relationship. It was challenging for caregivers to access and advocate for quality care when they and their loved ones were often assumed to be incapable of making ‘good’ and ‘healthy’ decisions. Street family and friends, despite their close relationship with care recipients, shared how they were often left out of conversations and critical decisions because they were not deemed ‘family’ by legal and healthcare systems.

Overall, we found that one-size-fits-all caregiver supports that currently exist in Canada (e.g., palliative home care and employment insurance programmes) hold little relevance for structurally vulnerable populations. Engaging with family caregivers in these contexts emerged as missing and necessary.

Equity in Palliative Approaches to Care (ePAC)

At the University of Victoria, we are mobilising these findings through our ePAC Collaborative. Members of the collaborative work together to conduct research with local, national and international partners, and develop resources and tools, programmes, and services aimed at improving access to quality care for people positioned as structurally vulnerable. Our projects are building capacity among people who live and work in the inner city to adapt palliative care knowledge, while working with the mainstream healthcare system to create approaches and systems that are more flexible and safe, to conceptualise family caregiving in all its forms.


More about the authors…

Ashley Mollison, MA, is a PhD student in the Social Dimensions of Health program at UVic (University of Victoria) and the Equity in Palliative Approaches to Care (ePAC) project coordinator. Dr Kelli Stajduhar, RN, PhD, FCAHS, is a professor at the UVic School of Nursing and Institute on Aging & Lifelong Health, and leads the ePAC collaborative. For more information and to join our newsletter, please visit: https://www.equityinpalliativecare.com/

DOWNLOAD A COPY OF THE FULL ARTICLE IN PALLIATIVE MEDICINE (OPEN ACCESS)
This post relates to the longer article,‘Caregiving at the margins: An ethnographic exploration of family caregivers’ experiences providing care for structurally vulnerable populations at the end of life’ by Kelli I Stajduhar, Melissa Giesbrecht, Ashley Mollison, Naheed Dosaniand Ryan McNeil, published in Palliative Medicine 2020, 34 (7); pages: 946–953. Article first published online April 27, 2020. Issue published: 1 July 2020. https://journals.sagepub.com/doi/10.1177/0269216320917875

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here, enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

  • Click here to join as an Associate or Individual Member, or to renew membership.  (Choose relevant national palliative care association if you wish to register free of charge as an Associate Member).
  • Now login with your email address and password and choose from the list of articles.

Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

Posted in EAPC-LINKED JOURNALS, Minority Communities, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH | Tagged , , | Leave a comment

Spiritual care in a hospice setting, in a secularised country

Earlier this year, we launched a series on Spirituality and Palliative Care that looked at how people deal with crisis and suffering when confronted with life-threatening disease. Following much interest in the subject, we’re delighted to publish more posts.   

Today, our guest writer is Erik Olsman, PhD. Dr Olsman formerly worked as a chaplain in Bardo, a hospice in Hoofddorp, the Netherlands, and is currently Associate Professor of Spiritual Care and Chaplaincy Studies, Protestant Theological University, in Amsterdam and Groningen,the Netherlands. He is also a member of the European Association for Palliative Care (EAPC) Spiritual Care Reference Group.


Dr Erik Olsman.

The hospice nurse asked me to visit the patient. “Are things going to be okay with my daughter?” the patient asked. “What do you mean by that question?” I asked her. She continued and told me her daughter had a boyfriend who was not trustworthy. At the same time, she and her daughter had hardly been in touch with each other for about ten years. I could sense her powerlessness. I surmised there were many untold stories that were painful.

The encounter resonated with my work in psychiatry, where complicated relationships were often part of a person’s struggles. Also, I felt a sense of anxiety about most of the things she said, which I made explicit later during the conversation. “Between the lines, I sense a worry or anxiousness? Do I get that right?” She started sobbing and felt relieved that I had raised the subject. “I’ve been struggling with this, my entire life, you know?! It took so much joy out of my life.” I nodded, listened and remained silent.

It made me think of the protestant theologian Paul Tillich. In his famous book The Courage to Be, he addresses the courage to affirm one’s own being, while life is threatened by non-being, which relates to anxiety: the anxiety of death, guilt and meaninglessness (Tillich, 1952). Also, it made me think of the five male and five female chaplains who were witnesses of hope, not by giving hope as an object to patients, but by acknowledging patients’ anxiety and despair (Olsman, 2020). It points to a central task of chaplains: to bear witness to the suffering of the other.

Another task is to help people articulate what is at stake in their lives. In a secularised country, this articulation is no longer exclusively framed in the language of religious and non-religious institutions. People frame it in their own ways. For me, poetry, singing in a classical choir, reading Jewish and Christian texts and stories, and friends are some of my spiritual sources. During my study in theology, I started reflecting on the content and language of these and other spiritual sources, which helped to widen my vocabulary.

A large vocabulary is required to help people with all kinds of spiritual backgrounds to articulate what is meaningful and meaningless in their life. Existential problems often cannot be solved. Still, it helps when a patient’s experiences, including anxiety, are articulated and acknowledged by a fellow human being. At the end of our conversation, the hospice patient grabbed my hand: “This was a relief, thanks! I feel less lonely now.” I hope chaplains will continue to do this, in collaboration with other professionals (Gijsberts, 2020).

References

Links and resources


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