Just because we can, should we? The TechChild story so far…

Maria Brenner, Professor in Children’s Nursing, Mary Quirke, Research Fellow, Denise Alexander, Research Fellow, and Josephine Greene, Research Assistant, the School of Nursing & Midwifery, Trinity College Dublin, The University of Dublin, Ireland. Here, the authors explain how TechChild offers a new way of thinking about life-sustaining technology, and welcome clinical professionals working with children to take part in their survey.


Clockwise from the top: Maria Brennan, Mary Quirke, Josephine Greene and Denise Alexander

The number of children needing continuous access to technological devices is on the rise. Technological advancements in critical care have also led to increasingly complex clinical, bioethical and legal concerns, with clinicians sometimes left asking Just because we can, should we?

TechChild, a five-year programme of research funded by the European Research Council, aims to provide a new way of thinking about the factors that influence the initiation of life-sustaining technology. It examines the influences on the initiation of technology dependence, taking long-term ventilation (LTV) as an example, in the context of contrasting health, legal and socio-political systems.

Early TechChild publications have focused on: analysing and understanding current concepts;1 arguments in the literature around the initiation of technology dependence;2 and on evolving changes to approaches to the initiation of life-sustaining technology in children.3 This work was critical to the development of interview questions for Phase 2 of the project, which commenced in 2020. Plans for face-to-face interviews and observations with physicians, nurses and members of the multidisciplinary team (MDT) across international sites were thwarted by the arrival of the COVID-19 pandemic; however, we addressed this challenge successfully. New approaches to data collection were developed through discussions and agreements with hospital sites, ethics and data protection officers. Interview times were then reorganised and conducted virtually. This all happened despite the immense clinical pressure our participants were under.

Calling all international clinical professionals working with children on long-term ventilation – please complete our survey

Collectively, the literature and analysis of Phase 2 interviews suggest several factors that may influence the initiation of invasive LTV. We have now developed and validated an anonymous factorial survey to examine the influences of these factors and we are seeking your views!

If you are a clinical professional (e.g. medical doctor, nurse, physiotherapist, dietician, pharmacist, respiratory therapist, or other member of the MDT) with experience of working with children who have commenced LTV, we would like you to participate.

Please reply as an individual (i.e. not at an institutional level). Participation is voluntary and if you choose to take part your answers will be completely anonymous and confidential. Your views on this topic would be very helpful, and by responding you will increase the accuracy of the survey results. Completion of the questionnaire should take approximately 10-15 minutes.

If you click on the link or scan the QR code below, you will be brought to the survey which will include an introduction, downloadable participation information leaflet and consent form followed by the survey. https://nursingandmidwifery.fra1.qualtrics.com/jfe/form/SV_4M9P0vCkqqeUkXs

We really appreciate your interest in this study and if you have any questions please contact Prof Maria Brenner (principal investigator) at brennerm@tcd.ie or Dr Mary Quirke at quirkemb@tcd.ie We would also be very grateful if you could forward this link to colleagues who might also be interested in taking part. The deadline for completion of the survey is 7 January 2022.

Acknowledgement: This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 803051). 

References

  1. Brenner, M., Alexander, D., Quirke, M. B., Eustace-Cook, J., Leroy, P., Berry, J., Healy, M., Doyle, C., Masterson, K. (2021) A systematic concept analysis of ‘technology dependent’: challenging the terminology. European Journal of Pediatrics, 180(1), 1-12. doi: 10.1007/s00431-020-03737-x.
  2. Alexander, D., Quirke, M. B., Berry, J., Eustace-Cook, J., Leroy, P., Masterson, K., Healy, M., Brenner, M. (2021) Initiating technology dependence to sustain a child’s life: a systematic review of reasons Journal of Medical Ethics, Published Online First: 19 July 2021. doi: 10.1136/medethics-2020-107099.
  3. Alexander D, Eustace-Cook J, Brenner M. (2020) Approaches to the initiation of life-sustaining technology in children: a scoping review of changes over time. J Child Health Care. doi:10.1177/1367493520961884

Links and resources


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Meet some of the leading international researchers in palliative care, discover new avenues for international collaborative research in palliative care, widen your horizons at #EAPC2022.  https://eapccongress.eu/2022/register/ 

 

Posted in CHILDREN'S PALLIATIVE CARE, RESEARCH | Tagged , , | Leave a comment

The role of palliative care in ALS/MND: Where are we and how can we do better? 

In partnership with the European Association for Palliative Care (EAPC) Neurology Reference Group, we present a new weekly series where practitioners and researchers share their experiences in supporting people affected by neurological disease.  

Today’s guest writer is Dr Simone Veronese, a palliative care physician with a deep interest in neurology. Simone is Head of Research in Palliative Care at Fondazione FARO, Turin, Italy, and a member of the European Association for Palliative Care (EAPC) Neurology Reference Group 


Although palliative care has an established role in almost all of the existing guidelines and protocols regarding the pathways of care of people affected by ALS/MND (amyotrophic lateral sclerosis/motor neurone disease), a great deal remains to do.

The United Kingdom’s NICE (National Institute for Health and Care Excellence) guidelines on Motor neurone disease: assessment and management recommend that the core multidisciplinary team should consist of healthcare professionals and other professionals with expertise in MND and should include a healthcare professional with expertise in palliative care; (MND palliative care expertise may be provided by the neurologist or nurse in the multidisciplinary team, or by a specialist palliative care professional). This may remain an ideal but is often not available to patients.

The EAPC Neurology Reference Group, in collaboration with the European Academy of Neurology Specialty Panel for Palliative Care, launched a survey for palliative care specialists to explore their involvement in ALS/MND care in 2021. Although a high number of responders declared to be involved in ALS / MND care, this may only be in the later stages of the disease progression, and the collaboration with neurology is limited and is rarely as part of the wider multidisciplinary team. A major barrier seems to be the reluctance of neurology to refer to palliative care, whereas patient and family reluctance is not a common reason for late referral to palliative care.

Research shows that a collaborative approach involving many services (primary care, neurology, gastroenterology, respiratory medicine, neuropsychology and palliative care) is the best way to provide care to ALS/MND patients and their loved ones. Services should be coordinated, with a key person or a team with whom the patient and family can have regular contact available for support and advice. The different roles, aims and timing of involvement of each service must be clear, and goals of care should be assessed and shared among professionals and users.3

There is now evidence that early palliative care is effective and sustainable in many conditions and that referrals should occur based on unmet needs rather than prognosis. In ALS/MND this is crucial, due to the various time points in the disease trajectory where good palliative care can make a real difference. Communication of the diagnosis, needs assessment, symptom control, psychosocial and spiritual issues, discussion of treatment options (PEG/NIV/IV), advance care planning (ACP) and end-of-life decisions, and bereavement care can all be triggers for appropriate referral.

So where are we now? We have reached a point of confidence on our role and ability to help but we still need:

  • To strengthen collaboration with neurologists and patients’ groups.
  • To be proactive offering our services to the multidisciplinary team for ALS/MND care.
  • To be aware of the potentiality of palliative care in helping patients and carers in all domains of their needs (anticipating crises, ensuring about the respect of choices and goals of care, spiritual care, practical help, bereavement).
  • To spread the good news within the palliative care community that ASL/MND sufferers are not difficult patients, rather they are people who might greatly benefit from our services and help.

References 

  1. National Institute for Health and Care Excellence.NICE Guidance on Motor Neurone Disease. 2016. NICE. www.nice.org.uk/NG42 [Accessed 23 November 2021].
  2. Oliver D. Borasio G.D., Cras P, Hepgul N, Lorenzl S, de Visser M, Vanopdenbosch L, Veronese S, Voltz R. A European Survey of the Palliative Care of People with Amyotrophic Lateral Sclerosis.  Abstracts from the 17th World Congress of the EAPC. Palliat Med 35 (1S): 154.
  3. Oliver DJ. Palliative care in motor neurone disease: where are we now? Palliat Care. 2019;12:1178224218813914. Published 2019 Jan 21. doi:10.1177/1178224218813914.

Links and resources 

  • Follow the Palliative Care and Neurology series on the EAPC blog. Next week, our guest writers will be Rachel Rutz Voumard, Ralf J Jox,
    Patrik MichelClaire J Creutzfeldt and Gian Domenico Borasio.
  • EAPC Neurology Reference Group (includes links to several useful publications and projects).
  • EAPC Neurology Reference Group Webinar – date to be announced soon. Follow us @EAPCvzw and the blog for latest information.

More about the author… 
Simone Veronese is a palliative care physician and head of research at Fondazione FARO, Turin, Italy.  View his academic profile and publications here. Contact him by email here.


PLEASE JOIN US AT EAPC 12TH WORLD RESEARCH CONGRESS ONLINE #EAPC2022 – registration opening soon at https://eapccongress.eu/2022

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Equity-oriented palliative care: Submit to the ‘Palliative Medicine’ special issue

Professor Merryn Gott (Aotearoa New Zealand) and Dr Kelli Stajduhar (Canada) are guest editors of a special issue of ‘Palliative Medicine’ on equity in palliative care. They invite your contributions about the experiences of communities and people impacted by structural inequities that illuminate innovative models of palliative care delivery.    

There is an urgent need to do things differently1

Merryn Gott (left) and Kelli Stajduhar

The Covid-19 pandemic has exposed the deep inequities that shape how we live, and how we die. Ethnically minoritized and Indigenous peoples have experienced greater rates of morbidity and mortality. The gap between rich and poor has grown. It is clear that change is needed. Internationally, we have seen a growing commitment to centring equity within health and social care policy and practice moving forward. As Michael Marmot points out: It would be a tragic mistake to attempt to re-establish the status quo that existed before the pandemic.1 

Leave no one behind2

This call has been heard by The Worldwide Hospice Palliative Care Alliance whose 2021 campaign calls for governments to prioritise equity-focused palliative care and tackle structural inequities in end-of-life experience and bereavement. Examples of structural inequities include issues related to race, ethnicity, gender or gender identity, sexuality, class, mental and physical health, and other domains that limit the opportunities people experience when seeking optimal health and wellbeing. The term may also refer to intersections between any of the above and are deemed inequitable when systematic differences in opportunities lead to unfair and avoidable outcomes. In addition, there is growing evidence of how the stigmatisation of particular social identities through, for example racism, homophobia, transphobia, ableism, ageism and/or sexism, can impact access to, and experience of, palliative care.

How services can compound inequities

Health and social services, including palliative care services, are formulated in response to the needs, and values, of dominant population groups and are not always perceived as safe places for everyone. In spite of this disadvantage, communities experiencing structural marginalisation demonstrate significant resilience, which often leads to the development of new resources and supports for people who are dying and their families both inside, and outside, of mainstream healthcare settings. However, new approaches to working to support such communities and individuals are needed and the structural and systemic forces that make health services, including palliative care services, unsafe for care for populations experiencing structural vulnerability, need to be challenged.

What can we do to promote equity in palliative care?

That is where we need your help. Currently the evidence base to inform much needed innovation and to understand the structural impediments to care is limited. We are therefore grateful to Palliative Medicine for devoting a special issue to equity-oriented palliative care and are pleased to be editing it. Papers published in this issue must demonstrate relevance with content that clearly relates both to palliative care and to populations that experience structural and systemic barriers to high-quality palliative care.

We are particularly interested in publishing empirical research which centres the views and experiences of communities and people impacted by structural inequities and illuminates innovative models of palliative care delivery.  We especially encourage contributions from those in the palliative care research workforce who have been impacted by structural inequities themselves, eg. Indigenous and racially minoritized researchers as well as those from other structurally disadvantaged groups.

Potential topics could include (but are not limited to):

  • Implementation and evaluation of novel, leading-edge models of palliative care for people who experience structural inequities and are underserved by palliative care;
  • Mobilisation of culturally appropriate, inclusive, and equitable care with diverse populations;
  • Facilitation of Indigenous-led models of care rooted in Indigenous ways of knowing and research traditions;
  • Enhancement of public and social policy in relation to improving outcomes for people living with poverty, disability, homelessness, and/or addictions;
  • Improvement of palliative care outcomes for lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2S) people;
  • Barriers and facilitators to culturally safe palliative care across a range of settings (e.g., hospitals, hospices, community-based organisations, care homes, home);
  • Symptom experience and relief, including pain control, for people who experience structural inequities and addictions;
  • Early supportive and palliative care interventions for those who experience structural inequities and are underserved by palliative care services;
  • Ethical issues in the course of palliative care for people who experience structural inequities and are underserved by palliative care services;
  • The experience and impact of racism and other forms of discrimination
  • Innovative, participatory and creative research approaches which foreground the experiences of structurally marginalised communities
  • The application of an intersectional lens to exploring end of life circumstances and experiences.

Call for papers now open…

We welcome contributions – empirical original research or systematically constructed reviews – to this special issue of Palliative Medicine. International perspectives on any aspect of equity-oriented palliative care are welcomed, as are short reports of promising practices in delivering high-quality palliative care to people experiencing structural inequities.

The deadline for submissions is 4 March 2022 and you can find instructions here. Our aim is to publish rigorous empirical original research,

References

  1. https://www.instituteofhealthequity.org/in-the-news/press-releases-and-briefings-/build-back-fairer-the-covid-19-marmot-review
  2. Worldwide Hospice Palliative Care Alliance’s 2021 campaign: Leave No-one behind: Equity in access to palliative care (Download the report here).

More about the authors…

Professor Merryn Gott is Director of the Te Ārai Palliative Care and End of Life Research Group, School of Nursing, The University of Auckland, Aotearoa New Zealand. Follow her on Twitter @MerrynGott  You can read an earlier contribution from Professor Gott on this blog.

Dr Kelli Stajduhar is a professor in the School of Nursing and Institute on Aging & Lifelong Health at the University of Victoria and leads the ePAC collaborative. Find more information and join our newsletter hereFollow her on Twitter @KStajduhar  You can read an earlier contribution from Dr Stajduhar on this blog.


PLEASE JOIN US AT EAPC 12TH WORLD RESEARCH CONGRESS ONLINE #EAPC2022 – registration opening soon at https://eapccongress.eu/2022 

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Bereavement is a family affair

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE 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 article in Palliative Medicine – EAPC members can access a FREE copy from the EAPC website.

Djin Tay (Assistant Professor, College of Nursing, University of Utah, USA) and Katherine Ornstein (Associate Professor, Icahn School of Medicine at Mount Sinai, New York, USA), introduce the background to their longer article selected as ‘Editor’s Choice’ in the October 2021 Special Big Data issue of ‘Palliative Medicine’. 


Dr Katherine Ornstein (left) and Dr Djin Tay

The loss of a family member has deep and sometimes lasting impact on those they leave behind. We know a lot about the impact of bereavement on spouses, but we know less about how the entire family’s health may be affected by bereavement. Moreover, it is always challenging to recruit individuals for end-of-life research, and even harder to study the wider family network of deceased individuals. This inspired us to begin to ask how many individuals may be affected by bereavement and to look to national registers that may capture family linkages around the end of life.

Using linked population registries in Denmark, we reconstructed the family networks (partners/spouses, children, grandchildren, great grandchildren) of decedents in Denmark who died between 2009-2016.1 This allowed us to estimate that only three in 10 persons who died from a psychiatric-related condition such as alcohol abuse had family members who lived close to them. In comparison, among those with cancer, almost nine in 10 lived with or close to their family. We also found that one in 10 persons had no living family members at the time of death, and that deceased individuals without families were more commonly male, older, lived in nursing homes, and those who died of psychiatric-related conditions or dementia. Such findings suggest that there may be key opportunities to provide targeted end-of-life support to specific populations. In subsequent work we have used these data to examine differential use of antidepressant medication for partners vs spouses around bereavement2 as well as high use of mental health utilisation among bereaved siblings.3

By linking Danish register data, our work was uniquely positioned to support analyses of family characteristics around the death of an individual. This research opens up the doors to study at-risk groups who may have poorer social support and resources often associated with having close family. This research also identifies groups with no family around the time of death, for whom the detrimental effects of social isolation may have a greater impact. We have since identified other data that links families to study end-of-life outcomes,6 and will continue to expand research in the field of bereavement impact on family systems.

Denmark provided a unique opportunity to conduct this research because of their remarkable system for tracking of individuals, linkage to families and palliative care register.  And while we can learn much from Denmark, we must also consider the cultural context of our findings. Denmark is a small country with high levels of individualism, low fertility, high rates of living alone, and exceptionally strong state-based support for older adults.  Family availability and support and its impact on end-of-life experiences will likely vary across cultures.

Families form the fabric of society in life as well as death, and it is important to understand the wider impact of bereavement on the surviving family network to improve the delivery of palliative care. This is especially challenging now as COVID-19 has resulted in global loss of over 4.6 million with long-lasting bereavement effects.4,5 Population-based registries with family linkages may hold the key to the questions we hope to answer.

References

  1. Kristensen, M. S., Thygesen, L. C., Tay, D. L., Kumar, R., Grønvold, M., Aldridge, M., & Ornstein, K. A. Size and composition of family networks of decedents: A nationwide register-based study. Palliative Medicine. 2021. 0269216321998602.
  2. Ornstein KA, Aldridge M, Gillezeau C, et al. New antidepressant utilization pre- and post-bereavement: a population-based study of partners and adult children. Soc Psychiatry Psychiatr Epidemiol. 2020;55(10):1261-1271. doi:10.1007/s00127-020-01857-1
  3. World Health Organization. WHO Coronavirus (COVID-19) Dashboard. World Health Organization. September 13, 2021. Assessed September 13, 2021. https://covid19.who.int/
  4. Joaquim, R. M., Pinto, A. L., Guatimosim, R. F., de Paula, J. J., Costa, D. S., Diaz, A. P., … & Malloy-Diniz, L. F. Bereavement and psychological distress during COVID-19 pandemics: The impact of death experience on mental health. Current Research in Behavioral Sciences2, 2021. 100019.
  5. Tay DL, Ornstein KA, Meeks H, et al. Evaluation of Family Characteristics and Multiple Hospitalizations at the End of Life: Evidence from the Utah Population Database. Journal of Palliative Medicine. 2021.

More about the authors

Djin L. Tay, PhD, RN, is Assistant Professor, Division of Acute and Chronic Care, College of Nursing, University of Utah, USA. Dr Tay is Vice President’s Clinical and Translational (VPCAT) Research Scholar (2021-2022); 2020-21 Family Caregiving Collaborative Caregiving Scholar. Read more here.
Follow Djin @DjinLL 

Katherine Ornstein, PhD, MPH, is an epidemiologist and Associate Professor in the Department of Geriatrics and Palliative Medicine and the Institute for Translational Epidemiology at the Icahn School of Medicine at Mount Sinai, New York, USA. She serves as the Director of Research for the Institute for Care Innovations at Home at Mount Sinai and the Mount Sinai at Home clinical programs. Read more here. Follow Katherine @MSHSGeriPalCare


READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article,Size and composition of family networks of decedents: A nationwide register-based study, by Marie S Kristensen, Lau C Thygesen, Djin L Tay, Raj Kumar, Mogens Gronvøld, Melissa Aldridge, Katherine A Ornstein, published in Palliative Medicine 2021 Volume 35 issue: 9, page(s):1652-1662. Article first published online: 6 April 2021. Issue published: 1 October 2021. https://doi.org/10.1177/0269216321998602

  • Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter @palliativemedj 

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 Members’ Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles, as well as many other membership benefits. Just click here, enter your email address and membership password and choose from the list of journal articles for 2021.

Join, or renew your membership here. Members of our national associations can join the EAPC for free here.  

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

Current clinical practice guidelines on palliative sedative for adults: What are the ethical challenges of this practice?

Dr Martyna Tomczyk and Prof Ralf J Jox, researchers in the ethics of palliative care at the Institute of Humanities in Medicine, Lausanne University Hospital in Switzerland, with the invaluable help of Mrs Cécile Jaques, a medical librarian at the same hospital, present a part of their recent project on ethical challenges in palliative sedation of adults, which is funded by a grant from the Pallium Foundation (Canton of Vaud, Switzerland).


Dr Martyna Tomczyk and Prof Ralf J Jox

According to the European Association for Palliative Care (EAPC), sedation is an important cornerstone of palliative therapy in patients with otherwise refractory distress. However, it remains one of the most highly complex and debated medical practices in the context of palliative care. Clinically, there are some types of palliative sedation. However, consistent terminology and definitions are lacking to date, which is a source of much ambiguity, confusion, and controversy in clinical practice, research and education.

In the past three decades, several clinical practice guidelines (CPGs) and position statements have been developed by international, national, or regional scientific societies across the world, and systematic reviews of some of these texts have been performed. However, the published reviews essentially focus on the purely medical issues of palliative sedation. Although the decision-making process inevitably raises several ethical questions and requires multiprofessional and interdisciplinary discussion, little is known of the ethical issues of this practice.

Do CPGs for palliative sedation address the ethical challenges of this practice? If so, how exactly do they do this? Do they present them with or without a proposal for solutions? Are they interested in all forms of palliative sedation or just a few? Which exactly? Finally, do they explicitly specify the ethical challenges of this therapy for cancer and non-cancer patients?

These are the main research questions that we are exploring in depth through our systematic review of CPGs. More specifically, the aim of our review is to identify systematically, transparently, and comprehensively the full spectrum of potential ethical challenges of all forms of palliative sedation for adults as presented in CPGs. Our study also aims to determine whether CPGs explicitly specify the ethical challenges of this therapy for cancer and non-cancer patients and, if so, exactly how they do this. To the best of our knowledge, no studies have yet investigated this topic.

This review will be of interest to palliative care practitioners of all backgrounds, as well as to researchers, educators in palliative care, and medical ethicists. Our review will provide an initial evidence base for dealing adequately with the ethical issues of this complex but necessary palliative care therapy. We hope that better understanding of the ethical issues of each type of palliative sedation will help reduce the gap and strengthen the methodological rigour of future ethical reflections in this field. Our findings could also have important implications for education in the ethics of palliative care at all levels.

Would you like to contribute to this research?

We would be very grateful to anyone who would like to help by sharing information on the CPGs for palliative sedation in her/his country. If you would like to contribute to this research, please contact Dr Martyna Tomczyk by email.

More about the authors…

Martyna Tomczyk, PhD, is a researcher in the ethics of palliative care at the Institute of Humanities in Medicine, Lausanne University Hospital and University of Lausanne, Switzerland. Read more and contact her via Orcid, LinkedIn and via the university website (in French).

Ralf J Jox, MD, PhD, is Chair in Geriatric Palliative Care, Palliative and Supportive Care Service, and also works at the Institute of Humanities in Medicine, Lausanne University Hospital and University of Lausanne, Switzerland. Read more and contact him via the university website.

Cécile Jaques, MSc, is a medical librarian at Lausanne University Hospital and University of Lausanne, Switzerland. Read more and contact her here.


RESOURCES AND FURTHER READING


PLEASE JOIN US AT EAPC 12TH WORLD RESEARCH CONGRESS ONLINE #EAPC2022 – registration opening soon at https://eapccongress.eu/2022 

 

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