As people we have always cared about the end of life. In the past we cared because the fate of the dead was important - we may care less about this now than before, but we do care, and probably worry about, how we will die. Yet, in relation to some groups of people, we are less inclined to think about this topic. One of those groups includes people with intellectual disabilities and those who survive them. However, the coronavirus has, to an extent, changed this. Death, dying and people with intellectual disabilities are now more talked about than ever before. It is, perhaps, the last act of inclusion, to draw people into conversations about death, to draw death into conversations about intellectual disability - to talk about what it means to die with an intellectual disability, or to experience the death of a person with an intellectual disability. These are conversations that are becoming possible, but they still retain challenges and taboos. These are conversations of importance to everyone connected to intellectual disabilities, whether as an individual, a relative, a professional, a researcher or a policy maker. What do we do about death? What should we do about death in intellectual disabilities? Of course we should stop premature death - that is where we have most of the conversations. However, death will happen, too soon, maybe too late, but happen it will. And when it happens, it has some meaning for us all.
Family carers will continue to have to live. Services will have to continue. Where are the dying and dead in the stories of families and services, the stories about what they do? Quality of life doesn’t end when someone is dying; it becomes perhaps even more important. How do schools support young people with intellectual disabilities who have experienced a death? What are the health care needs of people who are dying? Where does death fit into conversations about aging? What do the law and ethics tell us about death? How much are mental health outcomes influenced by experiences of dying? Is there a single strand of IDD research where death is of no relevance? Bringing death into conversations about our work and why we do the work we do is the final act of inclusion in the modern world.
Dr. Todd is leading the debate concerning the question “Why care about the end of life?” The debate will consider why death is an important concern for research across many disciplines within the field of intellectual disabilities (ID), now more than ever. It will focus on issues relating to why this is an important area for research and why decisions about whether someone with an ID might be reaching the end of their life are important for individuals and their carers. Dr. Todd completed his undergraduate degree in psychology at the University of Edinburgh. He then worked as a research assistant in the Information Services Division of the Scottish Health Service before moving to Cardiff. He took up a research post there with what was later to become the Welsh Centre for Learning Disabilities at Cardiff University. He completed his PhD there and primarily led qualitative research studies concerning the lives and careers of family carers of people with ID. He also developed and led research studies on the relationship between death, dying and ID. This later work was further developed when he joined the Unit for Development in Intellectual and Developmental Disability (UDIDD), at the University of South Wales, where he is a Professor in Intellectual Disability Research. His recent work has focused on mortality and care at the end of life in ID services across the UK, work that is currently being updated to capture the impact of Covid19. This work has also been extended to look at mortality of people with ID living in generic care settings for older people. He is currently also working with colleagues to look at issues of death, dying and disposal in an English asylum during the 1918-19 pandemic.
I am professor (“lector”) of End of Life Care (“Zorg rond het Levenseinde”) at the Avans University of Applied Sciences palliative care project leader at Stichting Prisma. At Avans I lead several research projects on end of life topics including spiritual care, shared decision making and end of life care for older people, people with intellectual disability, homeless people and people with autism spectrum disorder. We are also committed to increase awareness of palliative care and end of life issues in the education of our students and in the general public. Stichting Prisma is a care organisation for people with intellectual disabilities. My responsibilities as palliative care project leader include initialising, supervising and reporting on research on palliative care for people with intellectual disabilities. Aim is to improve care by increasing awareness of palliative care, training personnel and contributing to the development of care guidelines. I also aim at developing a functional national and international network.
I’m Pouwel van de Siepkamp. I started working with people with an intellectual disability in 1970 in different positions: direct caregiver, middle management, strategic management. Since 1990 I was working for 20 years as interim-manager. Not only in care for people with an intellectual disability, but also in nursing homes for elderly. I also started working as trainer/consultant gentle teaching.
I learned a lot about preparing for death in the time when I was active in giving training and support for hospice workers. This was based on the Buddhist philosophy.
In 1995 we adopted Henk and Leen, two brothers with an intellectual disability and since than they were part of our family. Leen passed away three years ago. He was hospitalized due to an allergic reaction on antibiotics. His condition was very critical and the perspective on surviving and getting back an essential level of Quality of Life was very limited. As a family with my wife and other children we had to decide to stop all treatment, bring him home with palliative care and give him a peaceful place to die.
The past 15 years I am active in national advocacy for people with an intellectual disability as board member and later chairman of a national parent organization. From this perspective at this moment I participate in the development of a interdisciplinary guideline for palliative care for people with an intellectual disability
Prof. Irene Tuffrey-Wijne (RN, PhD) is Professor of Intellectual Disability & Palliative Care at Kingston University & St George’s University of London. She has close collaborative links with Maastricht University (Netherlands). She has extensive clinical experience in both intellectual disability and palliative care services.
Since 2001, Irene has led a programme of research focusing on intellectual disability, cancer and palliative care. She has published widely and presented her work in the UK and across the world, and is recognised as the leading international expert in the area of palliative care for people with intellectual disabilities. Inclusion of people with intellectual disabilities as study participants and as salaried co-researchers is a key part of her work.
Irene is a founding trustee of the UK based (but international) Palliative Care of People with Learning Disabilities Network, and chair of the Reference Group for Intellectual Disabilities of the European Association of Palliative Care.
Prof. Dr. Carlo Leget is full professor of care ethics at the University of Humanistic Studies in Utrecht, the Netherlands. At the same university he holds an endowed chair in palliative care, established by the Netherlands Comprehensive Cancer Organisation (IKNL) and the Association Hospice Care Netherlands (AHZN). He is a member of the Health Council of the Netherlands.