Welcome to the first podcast of the 4D Picture Project. This is the first episode of this podcast series, which will provide information, about the 4D Picture project. The 4D Picture project is an international research study which aims to help cancer patients, their families and healthcare providers to better understand the care options that are available for them.
This episode features: Professor Judith Rietjens (Professor of Design for Public Health at the Faculty of Industrial Design Engineering – Delft University of Technology (TU Delft); Associate Professor Department of Public Health – Erasmus Medical Center). Professor Anne Stiggelbout (Professor Medical Decision Making, the role of patient preferences at Leiden University). Dr Ida Korfage (Associate professor at Erasmus Medical Center).
The 4D PICTURE project aims to help cancer patients, their families, and healthcare providers better understand their options. It supports their treatment and care choices, at each stage of disease, by drawing on large amounts of evidence from different types of European data. The project involves experts from many different specialist areas who are based in nine European countries. The overall aim is to improve the cancer patient journey and ensure personal preferences are respected.
The podcast is available on Spotify and Anchor can be accessed by the following link
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.
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:
Technology in Palliative Care (TIP) study published in JMIR Aging
I am delighted to annouce that the Technology in Palliative Care (TIP) study is complete has been published in the ‘Journal of Internet Medical Research (JMIR) Aging’ .
The aim of this modfied Delphi study was to identify research priority areas for digital health in palliative care.
The priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science. Human-centered design and robust governance systems should be considered in future research. 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.
We hope the findings of this work will help researchers, healthcare professionals and policymakers explore how innovations in emerging technologies can improve palliative care.
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.
Healthcare professionals’ use of video communication technology has increased during the novel coronavirus disease (COVID-19) pandemic, due to infection control restrictions. Currently there is little published data about the experiences of specialist palliative care teams who are using technology to communicate during the COVID-19 pandemic. The aim of this evaluation (published in AMRC Open Research) was to describe the experience of a UK based hospital specialist palliative care team, who were using video communication technology to support care during the COVID-19 pandemic.
Video communication technology has the potential to improve specialist palliative care delivery; however, it is essential that healthcare organisations address the existing barriers to using this technology, to ensure that these systems work meaningfully to improve palliative care for those who are most vulnerable beyond the COVID-19 pandemic.
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:
As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research. Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen. In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.
More information can be found in our case report here:
Stanley S and Nwosu AC. Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:3 (https://doi.org/10.12688/amrcopenres.12961.1)
Podcasts offer a fantastic way to learn about palliative medicine on the go. I’m delighted to be the Technology Editor of ‘Palliative Medicine’, the world’s most highly rated palliative care journal. Listen to our amazing podcast series , where talented authors share their important findings in their own words. We have many exciting and interesting podcasts coming up with over 60 podcasts in our back catalogue!
The podcasts are available from most places which curate podcasts. This includes Apple podcasts, Google podcasts, Stitcher, BeyondPod, Pocketcasts and more.
Podcasts can be recorded for FREE by authors of papers published in Palliative Medicine, or those who have had articles accepted for piblication. If you wish to record a podcast please contact me here: