End of Life Communication & COVID-19 - Royal College of Physicians
Our founder James Norris recently wrote an article titled ‘End of Life Communication: utilising technology during the COVID-19 pandemic. It was published in the Royal College of Physicians Commentary journal in June 2020.
The full publication can be read by clicking here
Hello My Name Is…
Introduction
Hello My Name is …is a social movement that encourages doctors, nurses and those providing care to introduce themselves to patients and families before providing them information. It was thought of by Dr Kate Granger when she was a patient receiving care. Kate observed that “It made such a difference to how I was feeling about myself, it made me feel more human again”. Kate then reflected on her own practice and whether or not there had been times when she had not introduced herself to her patients. Using her experience as both a doctor and patient Kate wanted to improve care and “try to get healthcare professionals to think about the importance of introductions and aspire to do better”.
A logo was created and for the rest of her life Kate and her husband Chris worked tirelessly visiting professional organisations and speaking at conferences about the impact such a simple thing can have on patients.
“I firmly believe it is not just about common courtesy, but it runs much deeper. Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help. They begin therapeutic relationships and can instantly build trust in difficult circumstances.”
– Dr Kate Granger
Kate’s legacy
For the remainder of Kate’ life she documented her experiences in a series of blog posts and memoirs. Kate used personification in her ‘Dear Cancer’ posts to highlight how she felt both about the cancer and her life and her condition.
Hello my name is… has become a global movement stretching across every continent across an array of different medical and non-medical settings. Kate was awarded an MBE for her services.
In conversation with Chris
We caught up with Chris Pointon to discuss ‘Hello my name is…” and highlight how we have integrated the campaign and ethos into MyWishes.
How can people get involved with “Hello my Name is…?
Everyone can get involved with the campaign and each time an introduction is made it’s making a difference to that interaction. Be it healthcare worker to patient or family member, or from colleague to colleague or just in everyday society…. it’s not just something that is healthcare relevant – it can be used in all walks of life….
What is your favourite ‘Hello My Name is…” story to date
One of my favourite stories is when I received a lovely message from a friend who was on holiday in Australia and had to visit a hospital in the Australian outback…. as they walked into the hospital there was a wall full of pictures of staff and the #hellomynameis logo above them with each member of staff introducing themselves and saying a little bit about them!!
We also now have the Kate Granger Building at the University of Surrey which is the new medical faculty in Guildford and ensures that Kate’s name will live on for many generations to come.
How does it feel knowing that your ongoing campaigning is still enhancing Kate’s reach, impact and legacy?
Overall I feel so proud that Kate’s campaign lives on across the world and is now almost 7 years old…. she will be smiling down knowing that the campaign continues to make a difference….
MyWishes and Hello my name is…
We decided to include Hello my name is… into MyWishes before it was launched. It is included in two ways.
Advance Care Plans.
One of the questions asked when documenting an advance care plan is “What name do you like to be called by?”
Once the advance care plan has been saved and downloaded the person’s preferred name is shown on the PDF or printed advance care plan as “hello my name is…” and the person’s preferred name.
When the advance care plan is read by a professional we hope that the “Hello my name is…” logo will act as a visual reminder that the professional should introduce themselves if they had not done so already. We also hope that they address the person by their preferred name.
Public MyWishes page.
Everyone on MyWishes has their own public page and unique URL. This can be customised (so that it is the same as your Facebook or Twitter handle) and set to ‘public’ or ‘private’. We again decided to include “hello my name is…” within this section.
“Everyone can get involved with the campaign and each time an introduction is made it’s making a difference to that interaction. Be it healthcare worker to patient or family member, or from colleague to colleague or just in everyday society…. it’s not just something that is healthcare relevant – it can be used in all walks of life….” To learn more visit: www.hellomynameis.org.uk
Compassionate Communities - Covid-19 Tweet Chat
On Saturday morning a Tweet Chat was arranged bt Public Health Palliative Care International. It explored what Compassionate Communities looks like today and what will it look like in the months ahead.
About Compassionate Communities
The principles of compassionate communities are applicable to both end of life care and to healthcare in general. Networks of support of family, friends, neighbours and community members, are the foundation of what matters most to those undergoing experiences of death, dying, loss and care giving. This is as true for the person with the illness as it is for those who make up the caring network. These experiences are not the sole domain cared for by professional health and social care services. They are social and cultural, involving all of us and are part of our cultural heritages.
These same principles, when applied across populations, result in dramatic improvements to health and well being. Good disease management, the domain of professional health and social care services, focus on harm reduction. Health and well being are more related to what matters most in life; the people we know and love in the places we know and love. Compassionate communities are programmes which work in this social ecology of care. The Compassionate City Charter is a set of 13 principles which cover the civic aspect of our lives, how we can become engaged in compassionate activities in the workplace, churches and temples, our state institutions, our media, our educational institutions amongst others.
Twitter chat
The three questions used to evoke thought and discussion were:
- Advance care planning (ACP) needs are clearly high at the moment with so many people unwell and being admitted to ICU and also people in palliative care needing to be discharged to home or visitors being limited.
- There have been some tensions about end of life planning though. In some countries people have been told by leaders to not start DNR conversations.What is the role of ACP now? Does Compassionate Communities have a unique contribution to the way we do ACP now?
- What can we do next? How can we support each other? What can @PHPalCare do to support you, your communities and your services?
Links to resources shared
Below are links to a number of the core resources shared during the Tweet Chat
- A message from the PHPCI Council regarding COVID-19
- Is ‘social distancing the wrong term?
- At the epicenter of the Covid-19 pandemic and humanitarian crises in Italy: Changing perspectives on preparation and mitigation
- Compassionate Communities Week
- Video consultations: how to set them up well, fast?
- How Hospitals, Hospices & Care facilities can use Skype to reduce loneliness during the Coronavirus
- Covid-19: information for bereavement services
- Coronavirus has upended our world. It’s OK to grieve
- Beating the virus
Images resources shared
Click on the images to view them in full.
Outcome
There was a number of lively conversations and threads that addressed areas ranging from digitising services and changing the ways in which support is provided to updating terminologies and methodologies.
Next Steps
- Apply learning into Compassionate Community projects, methodologies and frameworks.
- Disseminate information shared.
- Await future Compassionate Community Twitter Chats using the hashtag #ComComCovid on Twitter.
MyWishes Launch - Press Release
The Problem
Most people have not stated what they would like to happen should they die or lose capacity to look after themselves. They have not made plans for their estate or for their loved ones. Death is confusing and until now there has been no immediate benefit or reward for someone documenting and sharing their wishes with both professionals and those they care about.
The Solution
MyWishes breaks down the smoke and mirrors around end of life planning and provides free tools that encourage society to address both their physical and digital lives.
MyWishes utilises ’generation me’ and ‘gamification’ to provide immediate benefits and rewards. MyWishes hopes that this unique approach to end of life planning will change conversations and behaviours around estate ownership, digital legacy and advance care planning.
MyWishes users document details and preferences for their estate, healthcare, social care, digital legacy and funeral. These are then downloaded and shared (with a friend, family member, GP, Carer Solicitor etc). Users can publish their funeral playlist and bucket list before onto their public MyWishes page and release a series of goodbye messages for their loved ones after their death.
Some of the features include:
Once a user has registered and logged in, video tutorials provide support and guidance in each section. The MyWishes suite of features include:
-
My Last Will & Testament (inc; social media gifting)
-
My Funeral Wishes (inc; Funeral Playlist & Obituary publisher)
-
My Advance Care Plan
-
My Social Media Will (digital legacy planning)
-
My Goodbye Messages (published after death)
-
My Bucket List
Footnotes
Research and Development
MyWishes was developed with guidance, feedback and direction provided by members of NHS England, The Law Society, Hospice UK and an array of technology companies.
“By incorporating aspects of mainstream culture, such as gamification and mindfulness we hope to make end of life planning and self-care normal, sensible and mainstream”. - James Norris, Founder MyWishes
MyWishes was piloted with a number of hospices, charities and user groups across England. Due to today’s challenging circumstances, MyWishes has made the decision to make the software available to all, for free from today.
Further details
To publish and share this information
- Download this press release as a MyWishes Press Release as a PDF or Google Docs.
- View and Download JPEGs and GIFs from the Press Kit
Register for an account and document your wishes for free at www.MyWishes.co.uk
£10 donation provided to the NHS for every in-application solicitor referral
Donating to the NHS
We are living in uncertain times. One thing that is certain is that we need to support our dedicated friends, family and members of our community fighting against COVID-19. In the UK we have the amazing National Health Service (the NHS) helping us combat the spread and save the lives of those most negatively affected by the virus.
Until further notice MyWishes will donate £10 for each Last Will & Testament completed with one of our trusted solicitors to the NHS. This will help with the national effort to provide health boards with a little extra funding during this critical time.
Not checked by a solicitor |
Checked by a solicitor, video consultation and documentation completion |
||
|---|---|---|---|
Individual |
Individual |
Couple |
|
Basic willStraightforward will without the need for complex estate planning; appoints executors and guardians, deals with simple legacies and distribute estate. No trust structures incorporated into the will.
|
£0
|
£150
|
£250
|
Complex willComplex will may require tax planning building on the above service incorporating trusts (discretionary, or otherwise), address complex relationships, dealing with simple business and/ or agricultural assets.
|
£0
|
£250
|
£300
|
About our partner solicitors
MyWishes and all it's features are free to use. This includes the will writing tool.
A number of experienced, fully qualified and insured solicitors in England and Wales have agreed to support MyWishes users at a fixed fee. The fee is either £150 or £250 for an individual person and dependent on whether your Last Will & Testament is simple or complex. Once you have written you will on MyWishes you can download, print or share the document. They are able to provide completed and fully insured wills at this fixed price once a MyWishes user has spent time writing their will using MyWishes, unique and free to use will writing tool.
Once completed users share the document with a solicitor using the share button as shown above. Alternatively they can download or print the document before providing it to an external solicitor. When a user shares the document using MyWishes the solicitor will call or video call you using Skype, Google, Hangouts, Zoom or using the phone number you provide.
It will be fully reviewed and alterations made when it is suitable to do so. A few hours later the solicitor will send the completed Last Will & Testament to you. To complete the process and to make the document legally binding it will need to be signed and counter signed by two witnesses who are not beneficiaries of your estate as outlined within the documentation .
Upon completion a £10 donation will be paid to the NHS by MyWishes. If you would like to allocate your own money to a charity or a good cause within you Last Will & Testament this can be done within the Last Will & Testament's 'Charity Giving' section.
Further details about our will writing software can be viewed here.
New Leaflets for the general public, hospices and hospitals
Marcos out lead designer has designed the first MyWishes leaflet. These can be downloaded and printed by clicking here.
Once printed this can be folded into three. Both sides of the leaflet can be viewed below (before it is printed).
To download this leaflet (as a PDF) click here.
Bulgarian TV feature - MyWishes were recently featured on the BTV News
A film crew from Bulgaria recently flew over to London to learn about MyWishes, our goals and our mission. The feature was aired on the national TV station BTV. Here is a short snippet from the BTV evening news.
To learn more about MyWishes and how it works click here.
MyWishes included in Marie Curie's 'Thinking about your care and wishes ahead of time'
Marie Curie's 'Thinking about your care and wishes ahead of time' is for people living with a terminal illness, and their friends and families. It includes lots of information about planning for death ranging from the importance of an advance care plan to rehoming your pet. It has been written for all those who live within the UK and includes specific information for when differing approaches are required for those living within England, Wales, Scotland and Northern Ireland.
The resource is free to access and download from https://www.mariecurie.org.uk/help/support/terminal-illness/planning-ahead/social-media-online-accounts.
Hospice UK Conference 2019
This week we will be speaking at Hospice UK's national conference in Liverpool. James (our founder) will be speaking at 13:30 on Wednesday in a presentation titled Thinking ahead and looking back.
James will explore how the internet has changed the ways in which the internet has rapidly changed how we remember those who have died, and the ways in which we think about and plan for death.
Dying for change? Your opportunity to be at the forefront of the revolution.
We’ve known for many years that revolutionary change is needed in the way society approaches death and dying, and that we need radically new ways of meeting the challenge to provide effective, meaningful and compassionate care at scale.
We also know that genuinely revolutionary change is difficult to achieve amidst the daily pressures and constraints of maintaining and extending our services.
We’re inviting conference delegates to join us in a dedicated, highly participative workshop on 20 November to explore how a ‘prototyping’ approach to designing new services can help us to manage risk while unlocking new ideas and creativity.
In this workshop we’ll learn about prototyping and work with colleagues to plan small-scale practical prototypes to take forward at your workplace. You’ll then be able to join a ‘community of imagination’ in which participants produce radical and safe prototypes and learn from one another. Together we will be developing the insights and interventions that create radical solutions for the future.
This session isn’t for the fainthearted! You’ll need to come with open minds, ready and willing to participate fully - during and after conference.
The event management company which manages registration has now contacted everyone who registered interest in the Revolution workshop. The deadline for confirming interest is 25 October. There are a limited number of places at the workshop and places will be allocated on a first come, first served basis.
To learn more about Hospice UK and this year's conference click here
Upcoming event: 'Digital Estates: A Deep Dive into Managing Digital Assets'
About STEP
STEP is the global professional association for practitioners who specialise in will writing, family inheritance and succession planning. We have been asked by STEP to provide insights about the importance of planning for our digital assets (the possessions that we create, purchase and own online).
Meet us
If you are planning to attend and you would like to meet us please do let us know in advance.