The impact of the COVID 19 pandemic over the past 19 months has resulted in many people facing death and dying in their personal lives worldwide, which has encouraged many to have important conversations about their care preferences.
The pandemic has highlighted how many people have unmet palliative care needs, such as bereavement support, which offers decision makers an insight to the type of services that are needed in society.
Consequently, it is important that we continue to discuss how, as a society, we provide excellent end of life and palliative care in the future – particularly as palliative care is predicted to increase by 42 per cent by 2040 in the UK; however, this need has been accelerated by 20 years due to the COVID19 pandemic.
Palliative care need is increasing globally; by 2060, an estimated 48 million people (47% of all deaths globally) will die with serious health-related suffering, which represents an 87% increase from 26 million people in 2016.
The pandemic has resulted in many healthcare providers using digital health to provide clinical care. For example, palliative care professionals have used technology for education, clinical care and communication with patients, staff and caregivers.
The evidence suggests that good use of digital health innovations can improve healthcare quality, choice and access.[8, 9] There is potential that the benefits of digital health may also translate to palliative care; however, there is currently limited evidence of the efficacy or effectiveness of these innovations at the end of life.[10, 11]
As technology use in clinical (including palliative) care is increasing, it is important to consider how innovations of digital health can impact palliative care and dying in the future.
Providers of palliative care services should engage in dialogue with the individuals and organisations who are responsible for the design, use and implementation of digital health solutions, to ensure meaningful (and appropriate) use of these technologies.
Consequently, transdisciplinary partnerships between a range of stakeholders and large technology organisations (such as Amazon, Microsoft and Google) will be needed to ensure that technology and data are best used to support care for some of the most seriously ill in society.
As experts in palliative care, we need to be involved in the debate to ensure that proposed technological ‘solutions’ are evidence based and appropriate to the needs of our patients, and do not cause unintentional harm.
Digital health offers great potential to widen access and choice to improve aspects of palliative care delivery. However, poor implementation of these technologies may widen existing health inequalities and cause unintended harm. For example, we may exacerbate unconscious bias by using technologies, which are based on data, which do not represent the needs of certain groups of people.
Therefore, it is important that we actively engage in discussion, debate and research in this area, irrespective of our own personal views of the increasing use of digital health in society and clinical care.
Future research in this area needs a wide range of representation (e.g., patient, professional, engineer, ethicist), who are discussing the principles of using these technologies in practice and what that means for palliative care and those people who are dying.
Personalised medicine is an example of how advancement of technology can change the way care is delivered to people. Most of the development in this area has been in other disciplines such as oncology, where cancer treatments are being selected and chosen for an individual based on their genetics.
I believe that there is the potential that personalised medicine could be used to personalize palliative care therapy, such as pain control and management of nausea. Therefore, it is important that we look beyond palliative care, and towards other related fields which may provide us with new ideas and opportunities of how we can improve care for our patients.
Ultimately, the way that we deliver palliative care may be completely different in the future. It is important that we are prepared for the changes which are ahead, and that we have a voice in determining what that future looks like.
The future is not something that is ‘just going to happen’. Conversely, the future is something that we can ‘purposely shape today’.
Therefore, we must have these discussions now to ensure that people with palliative and end of life care needs receive the very best care in the future.
- Selman LE, Chamberlain C, Sowden R, Chao D, Selman D, Taubert M, et al. Sadness, despair and anger when a patient dies alone from COVID-19: A thematic content analysis of Twitter data from bereaved family members and friends. Palliat Med. 2021:2692163211017026.
- Harrop E, Selman L, Farnell D, Byrne A, Nelson A, Goss S, et al. 6 End of life and bereavement experiences during the COVID-19 pandemic: Interim results from a national survey of bereaved people. BMJ Supportive & Palliative Care. 2021;11:A3-A.
- Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine. 2017;15(1):102.
- Griffin S. Palliative care: Experts call for major reforms as pandemic accelerates demand by 20 years. British Medical Journal Publishing Group; 2021.
- Sleeman KE, de Brito M, Etkind S, Nkhoma K, Guo P, Higginson IJ, et al. The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. The Lancet Global Health. 2019;7(7):e883-e92.
- Greenhalgh T, Koh GCH, Car J. Covid-19: a remote assessment in primary care. Bmj. 2020;368.
- Nwosu AC, McGlinchey T, Sanders J, Stanley S, Palfrey J, Lubbers P, et al. Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method. medRxiv. 2021.
- World Health Organization. Global strategy on digital health 2020-2025: World Health Organization; 2020 [Available from: https://apps.who.int/iris/bitstream/handle/10665/344249/9789240020924-eng.pdf.
- Topol E. Preparing the healthcare workforce to deliver the digital future the Topol Review: An independent report on behalf of the secretary of state for health and social care https://topol.hee.nhs.uk/2019 [Available from: https://topol.hee.nhs.uk/wp-content/uploads/HEE-Topol-Review-2019.pdf.
- Finucane AM, O’Donnell H, Lugton J, Gibson-Watt T, Swenson C, Pagliari C. Digital health interventions in palliative care: a systematic meta-review. NPJ digital medicine. 2021;4(1):1-10.
- Hancock S, Preston N, Jones H, Gadoud A. Telehealth in palliative care is being described but not evaluated: a systematic review. BMC palliative care. 2019;18(1):114.
- Midorikawa Y, Tsuji S, Takayama T, Aburatani H. Genomic approach towards personalized anticancer drug therapy. Pharmacogenomics. 2012;13(2):191-9.
- Bruehl S. Personalized Pain Medicine: Pipe Dream or Reality? Anesthesiology. 2015.
Dr Ami Nwosu is a consultant in Palliative medicine and research lead at Marie Curie Hospice, Liverpool.