This year have an amazing and diverse range of speakers speaking about digital assets and digital legacy from a clinical and non-clinical perspective. We hope that the information obtained by the 200 attendees will inspire and evoke change within each of their practise.
Refreshments will be served for attendees upon arrival in a buffet format. These can be consumed before and during the conference.
You will be greeted with food and drink. If you or your organisation would like to be warmly welcomed by the 200 attendees by sponsoring the refreshments get in touch.
An introduction to the subject matters and terms ‘digital assets’ and ‘digital legacy’. How these subjects relate to end of life care.
Coop H., Marlow C., West Midlands Collaborative Actioning Research in End of life and Supportive care (WM CARES)
Social media is becoming a more prominent part of our everyday lives. As a consequence we will be leaving a digital legacy after death. Digital legacy is the digital information that is available about someone following their death, which may include website or blog listings, social media profiles, photos, videos and gaming profiles. Many will find it a comfort that their legacy remains on social media but there can also be negative consequences in relation to death, dying and bereavement. This survey was carried out to establish whether we prepare patients for their digital legacy within the West Midlands.
An online survey was sent to 11 hospices within the West Midlands, UK, over a 6 week period in 2017. The survey was circulated by the hospices to the doctors, nurses and social workers.
210 responses were collected (35% response rate). 96% had never discussed digital legacy with patients. Reasons for not having such discussions largely related to it not being considered, lack of knowledge about digital legacy or it not being felt to be appropriate or important.
This survey of health and social care professionals shows that we do not discuss digital legacy with patients. There is a potential unmet need that we are not addressing for patients. There is an education need across the region to raise awareness and confidence of digital legacy.
Dr Ollie Minton (Macmillan consultant in palliative medicine Brighton and Sussex University hospitals)
Ollie will share experiences to encourage more sharing of data, opinions and joining a growing palliative MDT community online.
One of us (MT) has had global recognition for his letter to David Bowie while others have had blogs in the BMJ supportive care (OM). All of us use twitter and its interactive nature to promote a spirit of unity and encouragement for end of life care more broadly. Given twitter is a public forum this is not without some controversy but the opportunity to discuss funding/ advance care planning / organ donation and research updates, blogs.
We all feel a regular and interactive presence online help our professional lives – many opportunities have arisen from this – radio & TV work aside – we have all been able to attend meetings where the prior introduction has been made virtually. There is of course no absolute scientific way of measuring “impact” but this is not that different from a research paper but we do all the dopaminergic likes and retweets to keep us motivated. We want to encourage others to be part of our gang and to dilute the in-jokes and UK centric perspective although we do have a southern hemisphere contingent the time difference does limit us.
If one person has made a will or had a serious illness conversation as a result of our presence then this has made everything worthwhile. The untold actions can’t be counted but as public health England like to believe – nudging goes a long way and with over 10,000 followers between us there will be impressions being made and while we know it is all a dark art we do hope that some of those have led to someone instigating a more concrete plan.
Dr Mark Taubert is a palliative care doctor at Velindre NHS Trust cancer hospital in Cardiff and a senior lecturer at Cardiff University. He is national strategic lead for advance and future care planning in Wales and holds roles with the Bevan Commission, Byw Nawr and the End of Life Care board in Wales. Mark is a regular speaker and editor in areas relating to palliative care, digital media, CPR and end of life care. He also contributed to a BBC Radio 4 programme in the UK called “My Digital Legacy´ in 2017 with Joan Bakewell .
Mark will illustrate a story of a patient he worked with, who created digital legacy content in the form of videos and messages, to be viewed at significant future dates in his family´s life. The journey to achieve this was in many ways harder than achieving good symptom control and took a significant emotional toll, but was what the patient truly wanted.
The use of internet enabled devices by patients at the bedside appears to be increasing year on year. Digital connections are everywhere, and can bring new opportunities when we are seriously ill. It is now time to ask the questions, “What makes a good digital death?”, and “How can digital media bring meaning during serious life-limiting illness?”.
In this talk, Dr Mark Taubert will outline his personal and professional experience with patients, carers, researchers and fellow healthcare professionals over years spent working in palliative care, and how since 2013 he has tried to make good use of sound & vision via new media, in order to ask pertinent questions that have been with our specialty for decades. The taboo around death and dying is seemingly starting to crumble on Youtube, Instagram, Facebook and Twitter with many more opportunities for us in palliative care to influence debate. How celebrities die, for instance, is increasingly commented on.
Dr Jacob Strand MD (Mayo Clinic School of Medicine. Triple boarded in palliative & hospice care, child & adolescent psychiatry and adult psychiatry, founder of the Center for Palliative Psychiatry and Medical Director of Palliative Care at CJW Medical Center in Richmond, Virginia, USA. David’s interest is in empowering patients to talk about‘ unmentionables’ in healthcare and the relationship between technology and medical care).
Discussion of the complexities in caring for parents who are patients in the age of online patient support platforms, virtual grief support groups and Dr. Google.
This session will engage participants in a case-based discussion of working with this patient population surrounding topics such as
1) Finding information about death and dying online.
2) Terminal illness support online
3) Grieving online
4) Additional attention will be given to strategies for engaging interdisciplinary resources in attending to these needs
James Norris (founder of the Digital Legacy Association and the Digital Legacy Conference. Lecturer at University College London)
James’ abstract will examine how the role of the healthcare and social care professional is changing following recent changes in attitudes and behaviours around end of life planning, death and the internet.
He will use year on year data from the digital death survey to further evaluate how professionals are embracing recent technological and communicative developments to better support patients with their digital assets and their digital legacy. It will question how technology is changing the ways in which the general public plan for death and how this relates to both advance care planning and documenting other important areas within a Last Will & Testament. Case studies will lead to a critical analysis around the impact of grieving online and the influence and importance of digital dead.
Digital assets and digital legacy resources currently being used by clinicians and the general public will be reviewed and discussed. Online planning tools that assist patients and the general public to plan for their digital death, and tools that enable the deceased to interact with their loved ones ´into perpetuity´, will evoke ethical, moral and sociological questions.
The session will conclude with the question; “should conversations around someone´s digital wishes form part of a holistic approach to advance care planning or should this area be addressed somewhere else?”
Four speakers (TBA) will be invited on stage for the panel conversation. The theme of the panel discussion will be ‘how to better support patients and families with digital assets and digital legacy’. This is an area that brings up questions surrounding ownership, legalities, safeguarding, the role of palliative, spiritual and and family support. Expect a lively debate, innovation and new ideas.
“While writing a Will is an essential way to plan for the future, in today’s technological era it’s just as vital to take care of our digital footprint or legacy. This was brought home to me when I went to a Digital Legacy Conference”.
– Sue Eskins, Clinical Lead Community Services at Dorothy House Hospice Care. (Link to the full article)