We are delighted to be close to launching a ward-based ‘Research Hub’ in Marie Curie Hospice Liverpool, which will enable hospice-based researchers to have closer connection with patients, caregivers and staff. We that the Research-Hub will help to raise awareness of the importance of palliative care research, and will support closer working practices between research and clinical staff.
The Research Hub pilot will run for a few months until early 2023, following which we will review the project to determine how this model can potentially support research practice and innovation in our hospice and other palliative care settings. Please stay tuned, over the next few months, for further information about the ‘Research-Hub’ of Marie Curie Hospice Liverpool.
Marie Curie Hospice Liverpool are delighted to welcome two design researchers from the University of Liverpool to conduct a project to design the future of hospice care.
Andrew Tibbles (right) is a Ph.D. researcher in Design for End of life and Dr Farnaz Nickpour (left) is an Associate Professor in Design & Innovation.
Andrew and Farnaz will be ‘Designers in Residence’ in Marie Curie Hospice Liverpool for a year, where they will study all areas of the hospice. The aim of the Designer-in-Residence programme is to co-define and co-imagine current and future hospice care as an ecosystem of people, objects, environments, technologies, practices and narratives of care. The programme has three distinct objectives and deliverables respectively:
a) co-creating a systems map of the current hospice care;
b) co-defining key values, requirements and challenges in the current system; and
c) co-imagining new value propositions in future hospice care systems.
You can find out more about the work of Dr Farnaz Nickpour and Andrew Tibbles, by visiting the website of their Design Research Lab: www.inclusionaries.com
On 08/09/2022 I delivered a talk called ‘Death, dying and the metaverse’, as part of the ‘International Collaborative for Best Care for the Dying Person’ webinar series. In this talk I reflect on my thoughts about how Web 3.0 technologies will affect how society will experience death and dying. I also discuss concepts such as digital legacy and digital immortality.
My talk starts at the 26 minute mark and is available from this link:
We have deposited our paper “Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method” on the medRxiv preprint server (ahead for formal peer reviewed publication)
The aim of this study was to identify research priority areas for digital health in palliative care.
This is first study to identify digital health research priorities for palliative care and provides guidance for researchers, funders and policy makers to consider areas for future research and development.
We identified 16 research priority areas for technology in palliative care, representing 8 themes of big data, mobile devices, telehealth, virtual reality, artificial intelligence, the smart home, biotechnology and digital legacy. Our findings will support researchers, clinicians and policy makers to improve the evidence base in these areas, through further research and development. This work is timely and important, as global palliative care need is increasing but there is a lack of evidence of how digital health can be meaningfully used to support care needs of people with advanced illness. Therefore, it is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely and safely and do not cause unintentional harm
The pre-print is freely available from the following link. Please note, that this has not been peer reviewed so should not yet be used to guide clinical practice.
Can we use technology better to support communication in palliative care?
We are looking for palliative care healthcare professionals to share their experience of using technology to communicate during the COVID19 pandemic.
The study is funded by Marie Curie is led by Sarah Stanley (research nurse at Marie Curie Liverpool Hospice). The study has ethical approval and is sponsored by Lancaster University.
We are seeking the opinions of Palliative Care healthcare professionals who have worked in the UK during the COVID19 pandemic.
This a short electronic survey (takes roughly 10 -15 minutes to complete) can be completed from a smartphone, laptop or desktop computer.
We will identify how technology have been used in palliative care, been used to support communication during the COVID19 pandemic.
We will use the outcomes of this work to inform policy, to identify how technologies can be used to improve palliative access beyond the COVID19 pandemic.
All the participant information, consent form and survey can be assessed from the link below.
Anaemia is common in hospice populations and associated with significant symptom burden. Guidelines recommend investigating for and treating iron deficiency (ID), but there is little evidence of this practice in palliative care populations. Our paper (published in AMRC Open Research) describes the results of investigations for and subsequent management of ID in Marie Curie Hospice Liverpool.
Our data demonstrates that iron deficiency is common and can be safely treated with intravenous iron replacement, within current guidelines, in a hospice setting. Further research should define the optimum use of this approach in palliative care patients.
The use of implantable cardioverter-defibrillators (ICD) has increased due to benefits of preventing death from cardiac arrhythmia. However, the increasing use of ICDs has created new challenges for how to proactively manage deactivation of these devices in people who are dying, especially for those who lack capacity to make decisions about their care. The aim of this case report is to discuss the challenges of planning for deactivation of an ICD for a patient who lacked capacity at the end of life.
In this case report (published on AMRC Open Research) we describe the challenges of managing ICD deactivation in a dying patient with fluctuating capacity who had previously expressed a wish for the ICD to remain active. Although it is preferable to use advance care planning (ACP), to provide care in-line with patient-identified care preferences, we demonstrate how a best interest process can be used to make decisions about ICD deactivation at the end of life.
More information can be found in our case report here:
I’m delighted to write a geust blog for BMJ Supportive and Palliative Care about how palliative care care be improved through use of digital health technology. I also reflect on how this presents an opportunity to learn from the COVID19 pandemic. Specifically, I reference an article by Clabburn and colleagues, which describes the novel use of ‘Ivy Street’, a Virtual Learning Environment to support palliative and end of life care education.
I was delighted that our letter about Big Data and palliative medicine was published in ‘Palliative Medicine’. This was in response to an editorial by Peter Tanuesputro which described how Big Data analysis of linked data has the potential to support care by indentifying patient needs. Our letter describes five challenges which need to be considered in order to make meaningful use of Big Data analysis in palliative care.
The letter is freely available in full from the link below.
I was delighted to be invited to write a guest blog for the European Association of Palliative Care (EAPC) website, about my role in developing podcasts for ‘Palliative Medicine’ in my role Digital Editor for the journal.
Amara Nwosu 