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:
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)
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.
Much written about the potential to use digital tools to reform healthcare, concentrate on the short to medium term (i.e. 5- 10 years). However, many of the benefits from digital health will only be fully realised in the longer (i.e. >10 years) term. This is because benefits arising from disruptive technologies may only be achieved following the implementation of cultural, workforce and infrastructural change, which can take time to achieve.
The King’s Fund Digital Health Conference recenty took place across two days in London (11th – 12th July) and provided an opportunity for profesionals from different disciplines to discuss how digital technologies can be used to transform healthcare delivery in the long term. There were several speakers and workstream groups which covered discussion of the opportunities and challenges of these approaches, in addittion to providing many examples of current use of technological and workplace innovation.
Particular highlights for me was Rob Shaw’s (Interim Chief Executive for NHS Digital) talk about the NHS Digital’s perpective on the importance of utilising health data better to provide integrated care. Also, Nicola Perrin (Wellcome Trust) provided an overview of the ‘Understanding Pataient Data’ project, which looks to improve awareness in society (professionals and lay people) about the value of using healthcare data to support patient care. Furthermore, the Wellcome Trust this year will undertake a project which will examine public perceptions of the role of new emerging technology (e.g. artificial intelligence, machine learning) in healthcare.
Many of the talks at the conference had inter-connecting themes; highlighting the importance of forming policy to shape culture through engagement of wider society and professionals. Although there is evidence of innovative work in several areas, a lot of fragmentation is currenty present. Consequently, it is important for collaborations of partners with a shared common vision for digital health.
As an academic palliative medicine physician I am interested in the potential digital health applications to support the management of people with serious illness. If anyone is also interested in undertaking work in this area, please feel free to contact me.
Further information of the King’s Fund Digital Health Conference (and other events by the King’s Fund) can be found here:
This year I was delighted to have been chosen to participate in the NHS North West Research and Development Knowledge Exchange scheme. This was the inaugural year for an exchange program which aims to facilitate the sharing of ideas, skills and knowledge between the health, University and business sectors. The hope is that such an exchange will lead to future innovation and collaboration between these areas.
The scheme was a fantastic opportunity for me to build on my interests of how new emerging technology is used to support care for people living with advanced illness. On the 5th of July I had the pleasure of spending a day with the Howz (https://www.howz.com), a company that specialises in the development of Internet of Things Home monitoring devices. Howz is a platform aimed at elderly people, typically living alone, that monitors energy usage, linking to patterns of daily activity which are identified by non-invasive multi-sensors that track heat, light and movement.The data is fed into live updates within the Howz app interface, allowing the user to notify their care network of their daily routine. The app also uses the data to spot anomalies in daily activity and send alerts to a family member, friend or care giver.
Throughout the day I met with different members of the team and discussed the opportunities and challenges surrounding the development of technology to provide health monitoring in the home environment. We shared potential solutions for overcome theses challenges and discussed opportunities for future work and collaboration.
Further information about the Knowledge Exchange Scheme for Early Career Researcher can be found here:
This episode of AmiPal is about the development of this podcast. I’ll discuss my paper which was recently published in BMJ Supportive and Palliative Care:
Lin M, Thoma B, Trueger NS et al. Quality indicators for blogs and podcasts used in medical education: modified Delphi consensus recommendations by an international cohort of health professions educators. Postgraduate Medical Journal 2015;91(1080):546-50. pmj.bmj.com/content/91/1080/546.long
In this episode I will provide an overview between the differences between research, audit and service evaluation. This is important to distinguish as research studies require ethical approval before they commence, whereas the other project types do not.
Other apps to mention:
If this then that (now know as IF or IFTTT) ifttt.com/
Social media and palliative medicine: a retrospective 2-year analysis of global twitter data to evaluate the use of technology to communicate about issues at the end of life. Nwosu et al, BMJ Spcare. www.ncbi.nlm.nih.gov/pubmed/25183713
