Practical ethics in researching technology applications in palliative care: Examples from the MyPal study

Professor Tina Garani-Papadatos (Greece), Professor Sheila Payne and Dr Sean Hughes (UK) on behalf of the MyPal Consortium.


Left to right: Prof Tina Garani-Papadatos, Dr Sean Hughes and Prof Sheila Payne.

Palliative care research always raises important and sensitive ethical questions.This is especially so when children, their parents and adults with advanced cancers are involved.

Funded by the European Commission, the MyPal research project aims to assess a patient-centred service for palliative care by improving electronic patient-reported outcome (ePRO) systems. Measurements are based on patient-reported information (eg symptoms, pain, psychological distress).

The project includes two studies: the first, MyPal4Kids, aims at creating a gamification app suitable for children with haematological cancers or solid tumours, and their parents, to regularly report their physical status and updates on their wellbeing and support received. The second study, MyPalAdult, aims to evaluate whether the MyPal mobile ePRO app can lead to improved quality of life and patient satisfaction for adults with haematological cancers, compared to standard care. Both studies fully comply with European Union rules on consent and General Data Protection Regulations; data collected will be stored securely and accessed in a way that will ensure privacy of participants. We focus now on the ethical issues for three groups of participants.

Children with cancer and their parents

We have been particularly careful in designing an approach both suitable and friendly for the child participants. Not only do we want to better motivate and help them to be as active as possible, but also to take account of the context in which they live. In the design phase of the gamified application, different levels of physical functioning were taken into consideration in relation to the health status of the child and the aims of the game. The latter requires familiarisation with the stage of disease and control of potential disappointment when a child does not perform well in the game because of advancing illness. Ethically, this addresses the need not to overburden research participants or potentially elicit harm especially, perhaps, where young people are involved. Ensuring the acceptability of digital health technologies for parents and family members providing care is essential in engaging them in the research process.2 However, special attention during this engagement process, was paid to the rights of the participating children: three different age-adjusted information sheets and assent/consent forms were prepared for children between six to nine years, 10-15 years and adolescents 16-18 years, using language which takes full consideration of their respective developmental levels. The common ethical denominator behind all these has been enabling the children’s voice to be clearly and honestly heard as most communication has been usually directed to parents..

Adults with haematological cancers

The MyPal RCT aims to test whether an app can help adults better understand and accurately report their symptoms more effectively and promptly as delays in symptom management may seriously impair the patient’s condition. It also raises ethical questions about the proper use of digital technology where there is a balance to be struck between privacy, intrusion and medical surveillance. In developing the app, we had numerous discussions and refinements, for example, agreeing inclusion and exclusion criteria to ensure that participation in the intervention group would not jeopardise access to clinical services. Moreover, notions about fitness to participate and ability to understand were addressed in a fair manner avoiding any possible discrimination for patients. We also endeavoured not to over-burden participants with too many questionnaires and assessments and will inform them in a timely manner of any new information that might influence their participation.

Health Care Professionals (HCP)

As the use of new technologies may affect the patient-professional relationship,a first challenge was to facilitate good communication and enhanced interaction between HCPs and patients. This aims for a shift from passive patient reporting based on conventional PRO approaches, to active patient engagement and appropriate responses from healthcare providers based on the principles of shared decision making tailored to individual patient needs. A number of ethical factors were considered in relation to this as we strive for full respect to the autonomy and privacy of all parties involved. Moreover, the studies were designed in a way that the new app interventions investigated would act in a complementary way to standard care so that the HCP focus would not divert their attention from the patient in front of them to the data generated on screen. Information from the participating clinical sites on current care provision and feedback from user groups was collected in order to contribute to the implementation design.

These, along with other ethical concerns, were built into the MyPal design to address the sensitivity of the research context and may be of relevance to others developing similar studies of new technology in cancer palliative care contexts.


References

  1. Preston N, van Delden JJM, Ingravallo F, Hughes S, Hasselaar J, van der Heide A Van den Block, L…. Payne, S. (2020). Ethical and research governance approval across Europe: Experiences from three European palliative care studies. Palliative Medicine, 34(6), 817-821. https://doi.org/10.1177/0269216320908774
  2. Widberg C, Wiklund B, Klarare A. (2020) Patients’ experiences of eHealth in palliative care: an integrative review. BMC Palliat Care 19, 158. https://doi.org/10.1186/s12904-020-00667-1
  3. Baggott C, Baird J, Hinds P, Ruland CM, Miaskowski C: Evaluation of Sisom: A computer-based animated tool to elicit symptoms and psychosocial concerns from children with European Journal of Oncology Nursing, 19 (2015) 359e369.

More about the authors…

Prof  Tina Garani-Papadatos is a lawyer and Professor of Public Health Ethics in the Department of Public Health Policy, School of Public Health, University of West Attica, Athens, Greece, and a member of MyPal Consortium.

Prof Sheila Payne holds an Emeritus Chair at the International Observatory on End of Life Care, Division of Health Research, Lancaster University, UK, and is a member of MyPal Consortium, leading work on Dissemination. She is recognised internationally for her research expertise in palliative and end-of-life care.

Dr Sean Hughes practised for many years as a specialist palliative care social worker and is now a lecturer in Palliative Care in the International Observatory on End of Life Care. Sean is also a member of MyPal Consortium.

Links

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The EAPC is looking forward to welcoming you to the 17th EAPC World Congress Online. Registration and Abstract Submission now open. Please visit the congress website for more information about the programme.

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How to measure the effects and potential adverse events of palliative sedation? An integrative review

María Arantzamendi, Alazne Belar Beitia and Carlos Centeno, researchers from the Instituto Cultura y Sociedad, Universidad de Navarra (Spain), are members of the Palliative Sedation consortium. Here, they explain the background to a longer article published in ‘Palliative Medicine’ and available open access.


Left to right: Alazne Belar Beitia,  Carlos Centeno and María Arantzamendi, researchers at the Instituto Cultura y Sociedad, Universidad de Navarra, Spain, and members of the Palliative Sedation consortium.

In an earlier post on the EAPC blog, Jeroen Hasselaar, Sheila Payne and Julie Ling talked about a European-funded Horizon 2020 Research Project, Palliative Sedation, which investigates current clinical practice, reviews guidelines and includes a prospective clinical study about Palliative Sedation for patients at the end of life across Europe. 1

Although there are some national and regional guidelines on palliative sedation and there is an EAPC framework, many questions remain unanswered, including how to measure the effects and potential adverse events of palliative sedation. As an essential foundation of this project the Atlantes team started by undertaking an extensive review of the literature on palliative sedation.

This review goes beyond pharmacological sedation 3  or the use of observational scales and seeks to establish the adequacy, timing and expertise for utilization of palliative sedation. It was time for a much-needed update of the literature on current clinical practice to understand how the potential effects and possible adverse events of palliative sedation were measured through an integrative review.

It is clear that there is international interest in the topic (we included 26 articles from 14 different countries 5). There has also been an increase in the availability of validated monitoring instruments of refractory symptoms and the effects of palliative sedation over the last 10 years.

Instruments to assess refractory symptoms

Commonly used instruments in clinical palliative care practice are used to identify refractory symptoms. The most frequently assessed symptoms are delirium and pain. Profound psychological or existential distress is mentioned as indications but there was no information on how these assessments were conducted. When patients were unable to provide details about their symptoms (i.e, due to delirium, the depth of sedation etc), proxies were identified as an important source of information. However, in the papers included in this review we did not find assessment instruments validated for proxy use.

Instruments to assess the effects and potential adverse events of palliative sedation

To assess sedation, we noted some scales that are frequently used and adapted to the palliative care context, such as the Richmond Agitation Sedation Scale-Palliative (RASS-PAL). Additionally, some comfort scales were also used as an outcome measurement in sedated patients (the Discomfort Scale-Dementia of Alzheimer (DS-DAT) or the Patient Comfort Score (PCS)). These provide a complementary approach to the more traditionally used ones that are based on symptom and sedation level, although importantly these have not yet been validated in palliative sedation.

This review suggests that there is limited information on unintended effects of palliative sedation. Several articles demonstrated that palliative sedation does not shorten survival and that there are very few adverse events (e.g. paradoxical agitation); however, information about how these were assessed was limited.

As the project develops, the consortium members will be contributing further articles to the EAPC blog, all of which you will find in the Palliative Sedation category.

References

  1. Payne SA, Hasselaar J. European Palliative Sedation Project. J Palliat Med. 2020; 23(2):154-155. doi:10.1089/jpm.2019.0606
  2. Cherny NI, Radbruch L. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 2009; 23(7):581–593.
  3. Beller EM, van Driel ML, McGregor L, et al. Palliative pharmacological sedation for terminally ill adults. Cochrane Database Syst Rev. 2015; 1(1):CD010206. Published 2015 Jan 2. doi:11002/14651858.CD010206.pub2.
  4. Brinkkemper T, Van Norel AM, Szadek KM, et al. The use of observational scales to monitor symptom control and depth of sedation in patients requiring palliative sedation: A systematic review. Palliat Med. 2013;27(1):54–67.
  5. Belar A, Arantzamendi M, Payne S, Rijpstra M, Hasselaar J, Radbruch L, Vanderelst M, Ling J, Centeno C. How to measure the effects and potential adverse events of palliative sedation? An integrative review. Palliat Med. First published online 14 December 2020. Download the article in open access here:  https://journals.sagepub.com/doi/full/10.1177/0269216320974264

Links

The EAPC is getting ready for the 17th EAPC World Congress Online.  Registration and Abstract Submission is open. (Abstract Submission closes 14 February). Please visit the congress website for more information.

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EAPC World Congress in 2021 – call for Abstract Submission is now open

Professor Fliss Murtagh, Chair of the Scientific Committee of the 17th World Congress Online of the European Association for Palliative Care, invites you to submit your abstract now.


Connecting together and sharing our work is more important than ever…

Professor Fliss Murtagh.

I am delighted to advise you that Abstract Submission for the 17th World Congress of the European Association for Palliative Care in 2021 ‘Exploring new dimensions’ – is now OPEN!

All of us are experiencing growing demand, changing practice, and increasing challenges to the delivery of palliative care. The 17th EAPC World Congress ‘Exploring New Dimensions’ will give you the opportunity to be re-energised; to hear about exciting innovations and progress from within our palliative care community, and make new connections with others working in palliative care practice and research.

The EAPC World Congress provides an excellent opportunity to step back and reflect on progress, and to consider the best ways forward. This is your chance to connect with colleagues, and to be inspired and re-energised. As we begin this 2021, we are all – in different ways – reflecting on the challenges of 2020 and gathering our energies for 2021. So many aspects of life have changed and will remain changed for some time to come. Palliative care is more in demand than ever, and we need to connect with each other, to encourage, support and share learning about the best ways to improve and provide care.

Together we can do so much more!

Those of you who joined the EAPC World Research Congress in 2020 will have discovered (and perhaps been surprised by) what can be achieved in a virtual congress; your feedback was excellent and has helped us learn what works well and what needs improvement on a virtual platform.

Members of the Scientific Committee #EAPC2021 (in pre-COVID times!)

The Scientific and Organising Committees for 2021 have more time to plan and innovate for the virtual EAPC World Congress in 2021, which will be held from 6 to 8 October 2021. We are shaping an exciting and innovative scientific programme and have developed creative ideas to connect virtually. Be prepared for new social and networking opportunities, higher impact and reach for your posters and oral presentations, and a wonderful range of speakers to connect with.

Every abstract counts and helps to build an outstanding Congress!

How to submit your Abstracts

Abstracts can be submitted for oral or poster presentations; there will also be a new option to submit for ‘poster presentation with an accompanying two-minute video’ (we encourage you to choose this, to help your poster be more accessible virtually). All details about Abstract Submission can be found here. (And submit your Abstract here.) The Abstract Submission deadline is 14 February 2021.

 

We look forward to hearing from you, and best wishes for 2021.

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Season’s Greetings to all EAPC members and supporters

A special message from Professor Dr Christoph Ostgathe, President of the European Association for Palliative Care. 


Professor Dr Christoph Ostgathe.

As the festive season approaches, we want to take this opportunity to wish you all a peaceful and healthy Christmas and a better year ahead.

Living in a changed world has been difficult for all of us. Many of you have been working on the front line delivering care to patients and their families during a time of unprecedented stress and pressure on often already stretched healthcare services. As with all challenges comes opportunity; there is no doubt that palliative care has been a key part of the response to Covid-19 and this is something that we, as a specialty, should be very proud of. The roles we take on are very variable; starting with support in symptom control of critically ill and dying patients with Covid, help in fostering communication (for example, when visits in the hospital are not allowed), support for relatives, and keeping palliative care running for patients without Covid.

The importance of not losing sight of the human being in the pandemic, apart from infection control, is shown in the words of a letter we received from a bereaved relative a few days ago.

“Despite the current visitor regulations due to the corona situation, you have allowed my mother to stay in my father’s room and to stand by him during his final moments. I was reassured to know that my father could take one last look at my mother during his last breath.”

This daughter may go into the time of mourning with a consoling image – but how different it would be if the mother had been denied the opportunity to be present in the room because of infection control. One role of palliative care in the pandemic is to safeguard the goal of dying well, which a pastor friend once formulated for himself as “To die as he was born, namely, not alone”.

Our 2020 congress planned for beautiful Palermo, Sicily instead took place as our very first online event. It was really well evaluated and we were very pleased that we were able to showcase a huge range of palliative care research from around the world. If you registered for the congress, you still have access to the platform and all  the content until 31 January 2021. Maybe you will find time over the festive season to access the on-demand content, watch some of the great talks and view more than 500 posters!  (Registered delegates should login here. Non-registrants can also access congress abstracts, selected sessions on the EAPC YouTube channel and a special series of congress articles on the EAPC blog).

Be a part of #EAPC2021 by submitting your abstract

A new year is coming and no doubt new challenges and opportunities for all of us lie ahead in 2021. The scientific committee for the 17th EAPC World Congress Online are already working hard on the programme for our next congress, which takes place 6 to 8 October 2021. Registration is now open. Abstract submission opens on 1 January 2021 until 14 February. We really look forward to receiving your abstracts and seeing as many of you as possible in October.

I would like to thank our head office staff, Julie, Avril, Bernadette, Cathy and Claudia, our Board of Directors, the EAPC Research Network, our colleagues in the EAPC Reference Groups and Task Forces, and members of  the EAPC Social Media team, who all work so hard on behalf of the EAPC and palliative care in Europe. To all our member associations, thank you for your continued support and engagement in EAPC activities. We are a membership organisation and you are the EAPC; our continued success is entirely dependent on you, our members and supporters.

Many of you will spend your Christmas with patients and their families. This can be a challenging time for those of us working in palliative care. Wherever you are, we hope that you have time and space for yourselves, and to be with your family if restrictions in your country allow.

For now, I hope that as Christmas approaches, you will enjoy the holiday season whenever that is for you (we celebrate on different days), and that 2021 will be a year of an effective vaccine, joy, health and prosperity.

So, on behalf of the EAPC, have a wonderful Christmas and our very best wishes to you all for 2021.


Please follow us and keep up to date with EAPC news…

The EAPC blog will take a break over Christmas and New Year. Please join us again on Monday 4 January 2021.

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Palliative care nursing and research:  A call to arms to conduct nursing research

For the past year, we have invited a guest writer to contribute to our special series to celebrate the International Year of the Nurse and Midwife 2020. We thank all our guest writers for their contributions that so richly illustrate the benefits that nursing and midwifery bring to the health of the global population. Today, we hear from Professor Catherine Walshe in a post that was originally published just at the time of the outbreak of the pandemic and which some readers may have missed.

Catherine WalsheProfessor of Palliative Care at the International Observatory on End of Life Care at Lancaster University, United Kingdom, and Editor-in-Chief of Palliative Medicine, the official research journal of the EAPC.

Professor Catherine Walshe.

Their eyes glaze over. They find it complicated to understand. They don’t know where to find access to relevant information. Yep. I’m talking about research. And more so I’m talking about nurses and research. As a nurse myself, and an educator, I feel able to give myself and my profession a steely gaze and acknowledge that we haven’t done as good a job as possible in helping nurses to understand how important research is, either as producers or consumers of research. Yet, in this International Year of the Nurse and Midwife, we clearly recognise that nursing is critically important to palliative care. Nurses are usually the most common healthcare professionals providing care and they likely have most contact with patients. Can we be assured that the care that they give is research based, where possible, in good evidence? In my view, probably not, as research is, for many nurses, not a core component of their educational preparation or ongoing development. There is little funding or support for them to conduct research, and typical career pathways or job plans don’t encourage research activity. There are notable exceptions such as the National Institute for Health research leader programme and clinical researcher development awards  in my own country, the UK, but I think it fair to say that research remains peripheral to much nursing practice.

And yet, there is great and influential nursing research out there that should guide our nursing practice. Sometimes we likely don’t recognise that it is nursing research or research about nursing practice. So, for example, do you recognise that the core component of the ENABLE trial of early palliative care is nurse coaching? Sometimes it is important that we look at reviews of multiple studies to guide our practice, such as this review that clearly demonstrates that interventions by specialist nurses in palliative care are effective in reducing healthcare resource use such as admissions, re-hospitalization, length of stay and healthcare costs. Research with nurses can tell us the characteristics that contribute to being ‘brilliant’ at providing palliative care through anticipation, commitment, and flexibility. Research can also indicate that perhaps some nurse interventions such as ‘nurse champions’   for palliative care in hospitals may not make a difference, from the point of view of bereaved relatives and we should rethink particular ways of providing care.

Pictured are some of the nurses who have received the prestigious EAPC Researcher Awards awarded by the EAPC and EAPC RN in recent years. Clockwise from top row: Dr Bridget Candy (with Prof Stein Kaasa); Prof Irene Tuffrey Wijne; Dr Julie Kinley (with Dr Ole Råkjaer); Prof Catherine Walshe and Dr Geanna Kurita. Established in 2009, the EAPC Researcher Awards recognise the work of scientists and clinicians in the field of palliative care who have made an outstanding contribution to research and clinical practice. 

What nursing research in palliative care often contributes is a real focus on the personal and interpersonal aspects of care for people who are dying – areas that we know are critical to care provision, and how people experience care.

We need a multi-pronged approach to ensure that such nurse-led and influenced research is common, published, read, and incorporated into practice. This is clearly a complex area, not just within palliative care. However, we can ensure that understanding and using research is at the heart of specialist palliative care nurse preparation. We can create time within palliative care nursing posts for research activity, and ensure that nurses are represented in palliative care research teams. We should help prepare nurses at PhD level so that they can become our nurse research leaders in palliative care for the future.

I started my nursing career in 1983 in a nurse degree programme where research was central to the education we received (thank you Manchester University), and that experience shaped my research career. Let’s make it possible for many more nurses.

Celebrate the International Year of the Nurse and Midwife 2020 on the EAPC blog #nurses2020 #midwives2020 View the series here.

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