Digital Legacy Conference & EAPC 2019
Speaking at the Digital Legacy Conference
We will be speaking at the annual Digital Legacy Conference the 16th World Congress of the European Association of Palliative Care in Berlin.
The Internet has changed many aspects of our lives. It has also changed the ways in which we view death, dying and bereavement and how we remember those close to us. This year, the 16th World Congress of the European Association of Palliative Care will welcome the Digital Legacy Conference.
This annual conference addresses death and dying in today’s digital world. The conference will be free to all congress delegates and will take place on Friday 24 May in Estrel B with the reception starting from 18:15 ahead of a prompt 18:30 start.
Tickets can be reserved at https://digitallegacyconference.com
What to do if someone close to you is diagnosed with a terminal illness
What's next?
Hospice UK have published a short video highlighting the two actions that you should follow if someone close to you is diagnosed with a terminal illness.
Charities and resources providing further support
There are a range of national and local services able to provide you with advice and support. Some of the main charities able to provide support are listed below. You may also want to find reach out to a charity, hospice or support network close to where you live. You may also find value in speaking with a charity who provides support to the general public around any specific conditions that you may be diagnosed with.
- Citizens Advice - Looking after people https://www.citizensadvice.org.uk/family/looking-after-people
- Marie Curie - Being there https://www.mariecurie.org.uk/help/support/being-there
- Together for Short Lives - Supporting you helpline https://www.togetherforshortlives.org.uk/get-support/supporting-you/helpline
- Carers Trust - https://carers.org
- Hospice UK www.HospiceUK.org
Grieving in a digital world (video)
How the internet is changing the way we grieve
A video about grieving in today's digital world features MyWishes. It was recently released following the Digital Legacy Conference in Siena College, New York last year.
The video explores how the internet is changing the ways in which society remembers and grieves for our loved ones.
For more information about the Digital Legacy Conference visit: http://DigitalLegacyConference.com
Survey Data
Each year the digital death survey is conducted. It explores and examines societies sentiment and behaviours around death and dying in relation to the internet.
According to the Digital Death Survey, the importance society places on being able to "view" social media accounts of the deceased appears to be increasing year on year.
Professor Green speaks about the importance of photographs and bereavement
Professor Green recently spoke to the BBC about power of photographs and their significance after someone we care about dies. Professor Green then explores how society and our relationship with photography has changed due to the birth of the internet and social media sites (like Facebook, Instagram and Twitter)
Russell Brand addresses grief
Russell Brand has has addressed many social and economical aspects of life and society over the years in both his standup comedy shows, his Youtube channel and podcasts. It is great that Russell has addressed 'Dealing With Grief' in this short video.
We would love to watch more videos by Russell Brand that address death, dying and bereavement. Good work Russell!
Stan Lee's final Tweet
Stan Lee (28th December, 1922 – 12th November, 2018) was an American comic book writer, editor, publisher, and producer. He is known for being the leader and face of Marvel Comics responsible for many superhero films and cartoons ranging from Spider Man and the Hulk to Black Panther and X-Men.
Stan Lee's final tweet appears to be pre-planned and simple yet true to the person he was. Stan Lee's legacy in both life and death continues.
— stan lee (@TheRealStanLee) November 12, 2018
What is a celebrant?
We recently spoke about end of life planning and MyWishes at the annual Celebrants Convention. Whilst there we caught up with Wendy Coulton a fully qualified Civil Funeral Celebrant.
In the video below Wendy Coulton explains what a celebrant is and how a celebrant helps support the recently bereaved when arranging a funeral service.
To document your funeral wishes (for free) and pass them on to you next of kin visit www.MyWishes.co.uk.
How technology has changed my life as a ‘End of Life' Doctor
Dr Ollie Minton
Hello my name is Ollie Minton…
I love my phone / my iPad and they are essential parts of life. It is not the clichéd work life balance more like a detachable cyborg component – I am not ready for any implanted chips.
My digital footprint is enormous (well I have fun using twitter). I find my work IT much less enjoyable naturally as the NHS is reliant on pagers and faxes and slow computers. So it is hard to see how ‘singularity’ (the merger of humans and machine) is going to affect my work as an end of life doctor.
There isn’t going to be a blood test (Daily Mail style) or indeed any sort of algorithm that’s going to accurately tell you how long you might live for…. and *spoiler alert* there is no miracle cure for mortality so while it may be a long way off death is inevitable.
“There is still a 100% morality rate in humans”
We tend to react to celebrity deaths and mourn publicly much more but usually this is many degrees of separation. Facebook memorials , tweets and the like but this doesn’t mean anyone does anything practical for themselves which is a shame to my mind professionally.
I can’t tell people to have feelings or to talk about things any more than you can be persuaded to see a doctor or tell them some theoretical circumstances that might lead to your demise and what you’d like to happen.
I can tell you that most doctors do everything they can to keep you alive which is great and makes my job all the harder as I meet people in who that’s not gonna work.
There are lots of myths to be debunked – the internet does not provide a sense filter – but there is no magic bullet out there. “The machine that goes Ping” is a comic take on this subject matter
…but if you get that far it’s much better to have something written down in advance or at least an emergency contact on your phone who knows how you think.
We all do sadly have to die of something (or lots of things as we get older) barring accidents and anything self inflicted and even then please please ask for help. Look
Dr Google is both your friend and enemy but if you live in England and are in doubt start at NHS choices https://www.nhs.uk
The adage goes that rare things are rare and common things are common – one in two of us will die from cancer or heart disease, no one lives forever and by 70 + even if you currently feel invincible (or at least not hungover or knackered) you’ll have had something go wrong.
I have written my Last Will and Testament and stated what I would like to happen to my digital estate. I also registe as an organ donor and have an organ donation card. I have also clearly expressed that if I am unable to speak for myself I would not want to live in a vegetative state. 
My advise to everyone would be to make plans for you and your loved ones… then roll the dice and may the odds forever be in your favour.
Dr Ollie Minton PhD FRCP FHEA. Macmillan consultant in palliative medicine. Brighton and Sussex University Hospitals NHS Trust.
Other news that might be of interest
MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.
Michael Sobell Hospice Palliative Care Department Mount Vernon Hospital, Gate 3 Northwood HA6 2RN United Kingdom (Map)
- Register and document your wishes for free here
- For all enquires click here
- To learn how MyWishes works click here
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Remembering David Bowie on the streets of Brixton, London
The night David Bowie died
On the night of David Bowie's death me and a few friends decided to head into Brixton in London where David Bowie was born. A celebration of his life was organised that day and tens of thousands of people lined the streets and bars.
The first thing place we visited was the artwork of Bowie by Jimmy C that is located opposite Brixton Tube station. There was a media frenzy outside and only those willing to brace the crowds could get near to the artwork.
We walked through the streets and every shop, bar, club and open window was playing a Bowie song. Those of us on the streets were celebrated Bowie's life, creativity and his music. There was chaos on the streets whether it was due to people dancing on phone boxes or huge speakers more accustomed to being in nightclubs facing out of people's windows playing music for those dancing below.
Brixton became a David Bowie festival....if just for one day.
Revisiting David Bowie's memorial wall
A few weeks after David Bowie's death I revisited the artwork of him by Jimmy C and noticed that a plastic perspex had been placed in front of the artwork. Behind the perspex is not only the artwork but thousands of memorial messages written in every available space.
I had previously seen street art by the artist Banksy with protective plastic in front of it. In my mind however this was due to the high value of Banksy's work and wanting to preserve it for monitory purposes.
The artwork and the messages to David Bowie around it has become a shrine protected by a plastic screen. The artwork had a cultural, sentimental and a somewhat spiritual relevance to Brixton.
David Bowie's last music video
David Bowie changed the conversations around death and highlighted the options that are available to us. A letter from a palliative care doctor to David Bowie is well worth a read (if you have not read it already).
In David Bowie's last music video he confronts death as he lays howling in hospital.
David Bowie's health and funeral wishes
It appears that David Bowie made his end of life wishes known to his family. He also decided to keep his illness private and out of the media's gaze. Instead of an elaborate funeral that would be in keeping with an artist and celebrity of his stature, Bowie instead opted for a direct cremation without a large public funeral or ceremony. This was arguably the final, unexpected area of thought leadership David Bowie left the World.
Your health and funeral wishes
MyWishes is free and simple to use. Once you have documented your wishes keep them in a safe place and enjoy life.
We will be visiting Albany and New York in October and November
We will be speaking at this years Digital Legacy Conference and would love to meet those working within the tech, end of life and hospice sector. Please get in touch if you are going to be in Albany or New York between the 24th October - 5th November.