What is a digital legacy and how can you manage yours?
We live in a digital world, which offers increasing opportunities to connect with others and share our lives. But what happens to our digital life when we die?
Why it’s important to make plans for your digital life and share them
Technology, the internet and use of connected devices (like mobile phones) has changed many things. It has changed the ways in which we communicate with our friends and family members, it is now changing the ways in which we plan for death and remember our loved ones.
There are a number of things that we can do in advance to help make sure that assets held within online accounts (often called digital assets) are not lost and do not become inaccessible when you die. Digital assets might include sentimental photos and videos held within social networks and cloud storage devices. Digital assets of a financial value might include shopping points, purchased songs, cryptocurrency and eBooks.
Making plans for your digital life can help reduce the amount of time, hassle and confusion that might take place after your death. This may be experienced by a loved one trying to locate your accounts and retrieve content, digital assets and information held within them.
Think
Think about the social networks, online-only bank accounts, cloud storage accounts and any other online accounts that contain your digital assets. Think about what is important to you within these accounts and whether the assets held might also be important to your loved ones after your death.
Think about the passwords on your mobile phone, laptop and other devices. Now think about the passwords you use for your online accounts. Do you want someone else to have access to your password-protected devices and online accounts, or would you be comfortable if access is not transferred? If access is not transferred, accounts are likely to remain inactive and the content within them inaccessible. What might the impact be on others if accounts become inactive and the content contained within them becomes inaccessible? What might be a good and safe way for you to grant access to someone else for some or all your devices and online accounts?
Certain online accounts and social networks now have their own way in which you can pass on different levels of access. Planning might be very different for each social network, online bank account and online account. A number of tutorials to help you make plans for the most commonly used social networks, platforms and devices used in England can be found here.
Plan
It is important that you make plans for your online accounts and password-protected devices. Plans can be made in a number of ways. These might include using the free planning platform MyWishesto log and share wishes within a ‘Social Media Will’ (sometimes called a digital will). Another way is to download an Excel template to document your online preferences; this can be downloaded by clicking here. If you have assets of a financial value (stocks, cryptocurrency etc.) you should also include them within your Last Will and Testament.
Share your wishes
It is important that you share your wishes, whatever they might be. Some wishes might be expressed through conversation. Conversations about your digital wishes might take place before you start making plans, whilst making plans or afterwards.
When plans are written down or documented online, it is very important that they are shared with at least one other person. When it comes to sharing wishes about your digital life, you might assign a partner, friend, child or a grandchild to manage the administration of them after your death. This person is sometimes referred to as a ‘digital executor’.
You might want to print copies of your wishes and keep them in a safe and accessible place within your home.
What happens next?
Once you have made plans for your online accounts and shared your wishes, you might experience feelings of accomplishment and happiness. These feelings may occur because your wishes are more likely to be adhered to when others know what they are. By making plans, you might also have a positive influence on your digital legacy. A digital legacy is the digital information that is available about someone following their death. Forward planning can influence your digital legacy in a number of positive ways. These might include ensuring that your favourite photos of you remain accessible, and your favourite stories that accompany one or more photos are told.
Making plans for your digital life is an altruistic task. Following your death, your loved ones might benefit both emotionally and financially by your forward planning. The confusion of trying to locate your online accounts and digital assets might be reduced after gaining an understanding of what was and was not important to you. Assets of a financial value might also be safeguarded and less likely to be lost or become inaccessible.
James Norris
James Norris is the founder of theDigital Legacy AssociationandMyWishes. James researches and develops end-of-life technologies, apps and websites. He also organises the annual, international Digital Legacy Conference and publishes regular tutorials helping to empower both professionals and the general public.
James has consulted various governments and non-governmental organisations. He provides thought leadership in areas relating to digital death, bereavement, technology and the internet. He has been featured in publications such as the New Scientist and spoken on various TV programmes including Breakfast on BBC 1.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
2nd May 2022
An African Way to Die
Photograph: A Sunset in Africa by Tim Heywood
George Gumisiriza is a PhD student based at the Centre for Death and Society (CDAS) at the University of Bath. His ongoing research is titled Repatriationscapes: Afrocentric perspectives on death and body repatriation among the African diaspora.
For Dying Matters Awareness Week (2-6 May 2022), we asked him to share his thoughts on what it means to be in a good place to die.
Paul’s socks
Repatriation is the process of returning an asset, an item of symbolic value, or person – voluntarily or forcibly – to its owner or their place of origin or citizenship. As an African who has lived in the UK for 10 years, I draw on my own experience of grief after loss as part of my research.
In December 2013, my cousin Paul, aged 48, returned to Uganda to die after 20 years in the UK. Paul had AIDS after contracting HIV in the 1990s. He died in April 2014. Paul’s last words to me about his decision were: “This winter is going to be very cold in England. I’ve got you a pair of socks and a scarf to keep you warm. I’m going home to Uganda and will stay there until summer next year.” Paul often said that Africa was his homeland and London was his place of dwelling. Paul knew that his death was close. The pair of socks and scarf symbolize both our grief and consolation. Material objects of memory can be helpful in handling grief after loss.
Recently, long illnesses and stigmatized diseases such as HIV have prompted people to think about how and where we die. However, what does it mean being in a ‘good place’ to die? How do things hold together in the face of death, and grief after loss?
African rituals
Like my cousin Paul, my thoughts about being in a good place to die are connected to my African sense of belonging. When I think on my death bed, I envisage people visiting me. I imagine people crying loudly after my last breath and people gathered in the courtyard for the funeral. Huge log fire at my funeral wake, a condolence book, and a basket for collecting the money. Mourners make contributions in cash, in kind or both because in African death ways bereavement is shared. I imagine the men digging the grave in the banana grove, talking about recent community misdemeanour. Grave digging in most Ugandan cultures is an opportunity for self-reflection and correction. The senior family head chooses the spot for the grave. The other seniors sit around to supervise the process as the younger men dig the grave in turns. Local brew of alcohol and a meal are served at the site. I see the women cooking food – receiving baskets of cooked food from the neighbours – young adults serving all the mourners.
Finally, I hear the loud cries of women as men carry my corpse to the grave. I hear dried banana leaves as crowds struggle to find their way and space around the grave. As the coffin is lowered, I hear the competing sounds of mild argument – panic, and loud wailing of mourners. Believers may try to restrain people through singing of hymns, but women – widows and bereaved mothers – are often unstoppable. Men do cry loudly too, in some cases. For many Africans, like my cousin Paul, the place and space are important for such rituals and practices.
Like my cousin Paul, my thoughts about being in a good place to die are connected to my African sense of belonging. When I think on my death bed, I envisage people visiting me. I imagine people crying loudly after my last breath and people gathered in the courtyard for the funeral. Huge log fire at my funeral wake, a condolence book, and a basket for collecting the money. Mourners make contributions in cash, in kind or both because in African death ways bereavement is shared. I imagine the men digging the grave in the banana grove, talking about recent community misdemeanour.
George Gumisiriza
My Masters research on death and body repatriation among Gambians in Wales (UK), revealed many similarities between their West African experience and mine, rooted in collective understanding of home as the land of birth. Gambians support their dying folks to return to the Gambia before death. However, this is not always possible, and sometimes corpses are repatriated after death. Gambian Muslims prefer to bury their dead in Muslim-only cemeteries where, as one interviewee told me, all the rituals are fulfilled. Other participants mentioned having prayers over the grave every morning and relatives visiting every day. This combines cultural and religious ways of grief and the meaning of being in a good place to die for the dying and the survivors.
Returning home
The idea of dying at home is popular among Africans as a physical place and space to die. ‘Home’ as a place combines the support from relations beyond the immediate family. Home is thought to provide the sense of comfort and security that people enjoy in good times. In moments of weakness, despair, and hopelessness due to terminal illness, home as a familiar place presupposes reassurance to control the situation. While not all people prefer dying at home, in Africa, returning an elderly person home from the hospital means two things: either the person has recovered, or the patient has demanded to return home to die. Whichever the case, home is considered a ‘convenient place’ to offer social support. Sometimes, spiritual leaders and medical professionals visit to offer their services. Migrants with such preference might find ‘home’ as a physical place to die challenging due to lack of social support available in their place of birth, where social connections with them have become thinner.
The Ranges of Snow-Capped Mt. Rwenzori in Uganda by Tim Heywood
In African cultures, the space in a dying person’s home focuses on the person, the dying process, and the event of death. The dying individual occupies space that is well lit and accessible. Social and cultural norms oblige folks to visit the dying. Despite the absence of death in open conversation, people act quickly when death is imminent. Responding to the dying’s social needs is prioritised to avoid regrets. Some activities outside the physical space consider how death may affect their plans. Banyoro / Batooro people in Western Uganda say, “taraleho – tasibeho” referring to imminent death by “sunrise or sunset.” Low-tone dying pep-talks of prompts and reminders about visiting the dying individual are common.
Abating the crisis of death
My native Runyoro / Rutooro language draws similarities between a ‘good death’ and the grave: the saying, “Olifa kurungi ogisanga hamunwa gwekituuro,” means a ‘good death’ is determined at the ‘mouth’ of the grave. The saying refers to both the individual and collective meaning of ‘a convenient place’ to die. Death very often causes chaos among the survivors. Some Africans seek practical ways to minimise the disorganisation that often follows death occurrence. Repositioning the dying to somewhere perceived as a ‘convenient place’ to die is widespread among African diaspora, for example, moving from urban back to rural homes to die is common. The other way is repatriation of the corpse after death for funeral rites and rituals. The difficulty in body repatriation involves cross-border regulations and excessive costs.
In African cultures, the space in a dying person’s home focuses on the person, the dying process, and the event of death. The dying individual occupies space that is well lit and accessible. Social and cultural norms oblige folks to visit the dying. Despite the absence of death in open conversation, people act quickly when death is imminent. Responding to the dying’s social needs is prioritised to avoid regrets.
George Gumisiriza
Repatriating a corpse is much more expensive than repatriating a living person. Yasmin Gunaratnam has fascinating stories about this, including a dying person snatched from their hospice bed by their family to put them on a flight home to die: the hospice had refused the request, as it considered the patient too ill to move. Another example in her book is a family who put a corpse in a wheelchair, and accompanied it on the plane, pretending the body to be living as they could not afford the cost of repatriation after death.
My cousin Paul was a professional dancer who loved pop-culture that embodies Afro-Western narratives, fashion, elegance, and creativity. Paul’s decision to return home was about his need to retain respect and dignity in the face of death. The Ugandan singer Philly Lutaaya’s song Alone and Frightened, which became “The Aids Anthem” in Uganda, describes the meaning of being in a ‘good place’ to die. The story starts with his personal grief and the need for resilience, emphasizing his longing to belong. In 1989, Philly returned to Uganda from Sweden and died in the care of his family.
Rivers of fresh water from the Mt. Rwenzori by Tim Heywood
Other cultures
Many cultures share some common thoughts about a good death. First, the visibility of the dying individual and the illness. Second, dying as a process, death as an event, and after death as rites or ceremonies. Third, the survivors and the practice within the place and space. In a recent case, the neuroscientist Dr. Nadia Chaudhri, a professor of Psychology at Concordia University in Montreal, Canada, died from ovarian canceron October 5, 2021.
In the final weeks of her life, Nadia daily shared her story online via her Twitter account (@DrNadiaChaudri), from her palliative care ward. Towards the end, Nadia said, “I will feast in my new life and welcome everyone to my forest table” (@DrNadiaChaudhri, 13 September 2021).
Nadia’s story indicates how she took control of a difficult situation reaching out to the world. She cared about the grief of the survivors after her death through her trust in the place, the space and the people who cared for her. Nadia Chaudhri – a migrant to Canada from Pakistan, she had a good dying not in her Pakistani home, but with her family in Canada, and finally in a Canadian palliative care ward. That for her was a good place.
In African death ways, repositioning dying individuals protects them from being excluded from cultural funeral rites after death. Both my cousin Paul and the singer Philly reassured themselves of being incorporated among the dead on the ancestral grounds. Paul’s socks kept me connected to other grieving survivors at home after his death. The work of my friend and fellow doctoral candidate Katie Taylor in mending the hole in my socks demonstrates support across cultures, based on shared experiences of death, dying and grief.
George Gumisiriza is pursuing a PhD in Social and Policy Sciences, funded by Economic and Social Research Council (ESRC) and the University of Bath. He is based at the Centre for Death and Society (CDAS). His PhD thesis is Repatriationscapes: death and body repatriation among African diaspora in the UK. His work focuses on Afrocentric perspectives on death.
George has a Master of Research in International Development (distinction), (University of Bath in 2021), a Master of Science in Social and Cultural Theory, (Merit) (University of Bristol, UK 2020) and Bachelor of Education (Honours) from Makerere University, Uganda.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
10th January 2022
“Spiritual care is at the heart of palliative care” – Spiritual Care Awareness Month 2022
Martyn Yates was formerly the Spiritual Care Lead and a Complementary Therapist at Pilgrims Hospices; he was based at the Canterbury hospice.
Whilst still in post, he shared how he came to his spiritual care role, what spirituality means to him in practice and why he believes it plays such a vital part in hospice care.
My average day working in palliative care at Pilgrims is spent looking after our patients, families and staff in as holistic a way as possible, which I find tremendously rewarding.
I’ve been working at Pilgrims Hospices for 33 years, initially as the Complementary Therapy Lead. When our chaplain left eight years ago, I was asked if I would be interested in “looking after the spiritual care of patients” from a “non-religious” point of view. I considered the request and agreed to it.
I’ve always had an interest in the spiritual aspects of life. In the 60s and 70s, I pursued many aspects of spiritual development whilst teaching in different denominational schools in South London; from this, I formed my own ideas of spirituality. Then, coming back down to Minnis Bay in Thanet with my wife to have a family and moving into the Alternative Therapy world – later to become the Complementary Therapy world – I continued to pursue other personal aspects of spiritual development and my life’s path became a spiritual one.
In everyday life, my daily spiritual practices give a foundation for me to have the best day I possibly can. Working at Pilgrims Hospices, I believe spiritual care is at the heart of palliative care; it is personal and can successfully cater for people of a particular religious faith or none.
As I also work as a complementary therapist, I treat my patients holistically – which means looking after their mind, body and spirit – and this fits in perfectly with my spiritual care role. It allows me to meet and get to know not only the patients but also their families, and I do my best to help them through this part of their journey.
Pilgrims Hospices celebrated Spiritual Care Awareness Month throughout January 2022, showcasing the many ways that spiritual care can make a positive difference to patients, their families, carers and loved ones.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
3rd January 2022
“Dying isn’t just a physical process” – Spiritual Care Awareness Month 2022
Sophie Van Walwyk is Head of Psychosocial, Wellbeing and Bereavement Services at Pilgrims Hospices.
She introduces Pilgrims’ Spiritual Care Awareness Month, explains how and where spiritual care fits within hospice care, and shares what spirituality means to her personally.
What does your role involve and how did you come to it?
In my role at Pilgrims, I’m responsible for our social workers, counsellors and spiritual care leads across our three hospice sites. I also oversee Pilgrims Therapy Centres, wellbeing services and bereavement care.
I joined Pilgrims in 2015, originally as a palliative social worker at our Thanet hospice. I’d worked closely with the hospice in my previous role with the local authority; learning more about the care and support offered at Pilgrims, I recognised I wanted to also support individuals who were facing the end of their life.
When someone receives a palliative diagnosis, it can be a frightening and sad time for them and their loved ones. Helping people adjust to and cope with the challenges they are facing is fundamental to hospice care – dying isn’t just a physical process, it is also a psychological, social and spiritual experience. It’s important to recognise a person’s individual needs and care for all of these in the same way we would treat their physical symptoms.
Treating the whole person is the best part of hospice care. Helping people understand what is important to them at the end of their life, and enabling and empowering them to live as well as possible for as long as possible, is such a rewarding part of my role.
What does spirituality mean to you?
Spirituality means different things to different people and it can change over time and in different situations. Traditionally, spirituality was based very much around religious beliefs and rituals, but modern spirituality has become a blend of religious beliefs, humanistic psychology and mystical or obscure traditions.
Spiritual needs can include:
The need to feel hope, peace and gratitude
The need for meaning and purpose in our lives
The need to feel a sense of belonging
The need to love and feel loved
People do different things to meet their spiritual needs, depending on what is important to them. For some this may be through prayer and worship, but it’s important to understand that our spiritual needs can also be met in other ways. These may include being with family and friends, spending time in nature, or through interests and hobbies.
For me, spirituality is how I make sense of myself, the world around me and my place and purpose in it. When I first started to explore my own spirituality, I had more questions than answers, and as I continue on my spiritual journey I often still do! But that’s how spiritual growth works; it helps you to question things about yourself and the world, and to accept things about them. It’s sometimes hard to describe what spirituality feels like, because that’s what it is – a feeling deep within you, a sense of inner calm and peace that only you can feel and understand.
We do have to give time and attention to our own spiritual growth though, it’s not something we can sit back and expect to happen. We have to work at it, by opening our minds and hearts and exploring different ways that may help us to care for ourselves spiritually.
I find being close to nature helps me to tune into my own spirituality, as it brings a sense of stillness and calm. It encourages me to slow both my body and mind, to simply be in the moment, and appreciate the beauty all around me.
What role does spiritual care play in hospice care and why is it important?
Spiritual distress or pain can happen when people are unable to find meaning, hope, love, peace, comfort, strength or connection in their life.
Dame Cicely Saunders, the founder of the modern hospice movement, taught us about total pain at the end of life – meaning that a person can feel not only physical pain, but also psychological, social and spiritual pain. We must recognise each of these elements that an individual may be experiencing, and support these needs with the same level of care we give to managing physical pain and symptoms.
When an individual is facing the end of their life, it’s natural that they may want to reflect on the meaning of their life – perhaps for the first time, or at a deeper level than they have done before. They may also want to think about death, loss and grief in new ways.
Pilgrims Hospices celebrated Spiritual Care Awareness Month throughout January 2022, showcasing the many ways that spiritual care can make a positive difference to patients, their families, carers and loved ones.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
15th December 2021
“It’s about being attentive to each person’s needs, religious or not” – Spiritual Care Awareness Month 2022
Petra Kerr has been a Spiritual Care Volunteer at Pilgrims Hospices since 2016.
She shares what inspired her to get involved and why she enjoys her role.
In 2015, I felt I was being called to help people in their time of need, so I enrolled on a course called ‘Pastoral Care’ organised by the Diocese of Canterbury. Once completed, I then attended another course, ‘Funeral and Bereavement’. Contemplating where I could develop my skills, I was instantly drawn to Pilgrims Hospices.
I met with Martyn Yates in 2016 and immediately knew that Pilgrims is where I wanted to be; within a couple of weeks, I had become a Spiritual Care Volunteer.
I always remember Martyn saying to me, ‘never be afraid to laugh in here’. At the time, I thought, ‘how very strange’, but I genuinely have had some really funny moments with staff, patients and families.
I was also blessed in 2017 to be given authorisation from the Bishop of Dover to administer the sacraments as and when required; this was a great privilege for me.
I’m often asked if you have to be religious to receive pastoral or spiritual care. I believe not. For me, it’s about being attentive to each person’s needs, religious or not. It’s about being compassionate and considerate. It’s not always about speaking, either; a simple holding of hands is sometimes all it takes.I strongly believe that spiritual care plays a crucial part within hospice care, as it’s about helping the patient and their family manage any uncertainties they may have and listening to and responding to their needs.
I feel honoured and humbled to be a part of the amazing work Pilgrims do.
Would you like to become a Spiritual Care Volunteer for Pilgrims and make a positive difference to people living with an incurable illness in east Kent?
Pilgrims Hospices celebrated Spiritual Care Awareness Month throughout January 2022, showcasing the many ways that spiritual care can make a positive difference to patients, their families, carers and loved ones.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
“Human spirituality is complex” – Spiritual Care Awareness Month 2022
Ken Cox was formerly the Spiritual Care Lead at Pilgrims Hospices; he was based at the Thanet hospice.
Whilst still in post, he shared what he enjoyed about his role, what spirituality means to him and how spiritual care makes an integral contribution to the holistic nature of hospice care.
What does your role involve and how did you come to it?
In my role at Pilgrims, I am called upon to give spiritual care and advice to anyone who needs it; patients, carers and staff are all included within my remit.
During training to become an ordained Church of England priest, we are required to undertake a pastoral placement. As I had no experience of hospice work, I thought it might be good to expand my knowledge and I managed to get a placement at the Canterbury hospice.
From then on, I felt a call that working in a hospice environment would be the area for me to continue in after my curacy was completed. I initially came to the hospice as a volunteer and was appointed to my current role as Spiritual Care Lead at our Thanet hospice in 2016.
I get a high level of satisfaction in helping people through emotionally hard times. I enjoy the interaction between myself and those I meet. Most of my working career has involved working as a team, so I am comfortable with and enjoy working with the other disciplines on the hospice multi-disciplinary team.
What does spirituality mean to you?
Human spirituality is a complex and difficult thing to nail down. The textbooks define it as relationships, values and life purpose. The main thing I concentrate on is relationships between myself and the people I come into contact with; the rest follows on. A basic relationship can grow into one where I can help the person come to terms with what is happening.
My views on spirituality have been informed by study and reading of various books during ordination training. The academic reading is backed up by experience of being at the frontline of peoples’ emotions and raw feelings at a difficult time in their lives. It was a distinct advantage to have been a volunteer for a few months before taking up the role as a paid job.
What role does spiritual care play in hospice care and why is it important?
From my point of view, spiritual care can play a vital part in a patient’s or carer’s pathway whilst being cared for by Pilgrims. It involves being alongside people, lending a listening ear at their darkest time and being a shoulder to lean on, to help smooth things that are getting a bit bumpy.
An integral part of working at Pilgrims is not to be judgemental. Some people suffer from guilt due to past actions as they come to the end of their life, and wish to atone or at least talk about this, which enables them to move forward.
Spiritual distress can happen at any time during a person’s association with the hospice. This is an area where the Spiritual Care Lead can help immensely, talking through what is causing the distress, not offering any solutions but allowing the person to work through things and clear their minds. Often, it is physical and sometimes emotional pain that can be sorted out. We also work with people who have changed their belief system, either losing faith or discovering a dormant belief that comes to the fore. Quite often, people find it difficult to adjust to their new way of thinking, but spiritual care can help with this.
A spiritual care lead is an integral part of Pilgrims’ multi-disciplinary team, which meets daily to discuss patients. At times, the spiritual care lead can have information that helps clinical staff gain an alternative insight into what a patient is feeling. As part of the team, we can be asked to follow up and provide another eye on the subject from a different perspective, which can be of great help.
Pilgrims Hospices celebrated Spiritual Care Awareness Month throughout January 2022, showcasing the many ways that spiritual care can make a positive difference to patients, their families, carers and loved ones.
There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.
