Grief, Loss and Bereavement was the thought-provoking topic of the Rennie Grove Hospice Care Annual Conference held on Wednesday 18 October 2017.
Colleagues from a variety of different organisations supporting people through bereavement came together for a day of learning and discussion around the issues faced by those who have experienced the death of a friend or family member.
Chairing the day’s proceedings was Dr Adrian Tookman, Palliative Medicine Specialist, Medical Director of The Marie Curie Hospice, Hampstead and national Clinical Director for Marie Curie.
In his opening speech Dr Tookman reflected on the changes that have taken place in palliative care during his career and observed that end-of-life care is now much more complex with people living for longer, but not in good health, often with multi-morbidities including conditions other than cancer.
The first speaker of the day was Cathy Sosoli from St Catherine’s Hospice who introduced some of the different theoretical perspectives about loss, grief and bereavement. Cathy pointed out that a lot of loss and grief actually happens before people die but that in our death denying culture, we don’t like to talk about it. She suggested that it was vital for healthcare professionals to facilitate discussions around death and dying because to be able to explore grief and loss, you need to accept death and dying. Talking about it with loved ones before they die helps people through the grief process and avoids any uncertainty and arguing about their final wishes.
Cathy recognised that there are a number of reactions and sensations involved in grief which span physical, feelings, thoughts and behaviours and that it is important to understand, respect, normalise and be reminded of these. Ultimately everyone grieves differently but over the past 48 years there has been a considerable amount of research into grief and loss which has identified many different types of grief.
Cathy then outlined some of the key research theories including Elizabeth Kubler-Ross’s acclaimed book “On Death and Dying” which introduced the concept of stages of grief in 1969, Stroebe and Schut’s dual process model of the 1990s which hypothesised that people oscillate between loss-oriented and restoration-oriented areas which help them get through, and Lois Tonkin’s work on Growing around Grief which challenges that grief gets smaller and lighter all the time, but that life continues to happen around our grief.
For the second slot of the day, the focus turned to the bereavement experience of lesbian, gay, bisexual or transgender people. In the first part of the presentation, Dr Katherine Bristowe from King’s College London spoke about her AccessCare research, funded by Marie Curie. She recognised that while legislation was slowly being introduced in the UK to protect the rights of the LGBT community, the global picture is not so tolerant. Even in the UK historical experiences of discrimination are being carried forward by people which can create inequalities in terms of access to hospices and other care and support. Moreover, the discrimination they have experienced actually puts them at higher risk of mental health issues, certain cancers and drinking, smoking and drugs.
Katherine highlighted the fact that our society doesn’t value the loss of a civil partner in the same way as a spouse and that if the relationship is not recognised, the bereaved can be left very isolated with a lack of access to bereavement support.
Dr Steve Marshall, Palliative Care Social Worker at King’s College Hospital, then shared some of his experiences of the problems faced by the LGBT community including a case study of a man who was still biologically female and was diagnosed with ovarian cancer and how difficult this was for him and his family. Steve encourage practitioners not to be blinded by LGBT and to use their skills to offer support while taking care with the language used and other sensitivities.
Katherine asked delegates to check their organisations’ policies regarding LGBT and to ensure that everyone is trained and that organisations increase the visibility of LGBT in their materials with explicit markers of inclusion. Specific initiatives to partner with or engage with LGBT community groups would also be very beneficial.
The third presentation explored loss, grief and bereavement in the context of dementia. Victoria Lyons, a Senior Consultant Admiral Nurse with Dementia UK introduced the work that Admiral Nurses do with families affected by dementia. Currently there are over 850,000 people in the UK with the condition but it is thought that only half of the people living in the UK with dementia actually have a diagnosis.
After running through the different types of dementia, Victoria stressed that grief and bereavement occur throughout the whole dementia journey, not just at the point of death and that support for families for this anticipatory grief is sketchy. She also highlighted the importance of doing advance care plans early so that the patient can be involved too and that we shouldn’t be afraid of talking to people with dementia about death and dying, whether it is their own death being discussed or someone else’s. Those caring for people with dementia experience great social changes during this, often extended, period and support is important to help them through the sudden loss and isolation they feel. We should all focus on improving the system and providing better care for the sake of future generations.
The final session before lunch examined the effect of suicide on grief, loss and bereavement. Leslie Worrall, a Psychotherapist and Supervisor who works in private practice in Hertfordshire shared her personal and professional experiences of suicide. Every 40 seconds someone in the world carries out suicide and Leslie stressed that suicidal feelings need empathy. She believes that for a therapist to be alongside a client who feels suicidal, they would need to know their own feelings about suicide.
Leslie described her experiences of losing family members to suicide while she was very young and then losing three clients in a fairly short space of time. She explained how these deaths had a huge impact on her and on her practice and that she had strong feelings of aloneness and responsibility, even though deep down she knew that she couldn’t have done anything differently. She recognised that she needed to connect with her feelings if she wanted to be alongside clients but wondered if the fear of losing her own mental health was coming between her and her clients. She concluded by stressing the importance of clients feeling accepted and heard when they have suicidal feelings because this might mean they can change things, or it might not, but we must offer an open ear.
After lunch there were a series of short presentations.
Linda Magistris, founder of The Good Grief Trust shared her experiences of grief after her partner Graham died from cancer and she fell apart. She described asking her GP for help but not wanting to go on medication and how the limited bereavement support she was offered was not suitable for her, until she found an organisation called Widowed and Young which proved to be a lifeline for her. She was shocked that despite the fact that the Widowed and Young was 20 years old, her GP had never heard of it. She identified a need to bring bereavement services together so that people are aware of what help and support is available and The Good Grief Trust website will launch at the end of October supported by a range of other materials and social media marketing.
Robin Radley from Cruse Bereavement Care outlined the aim of the organisation to walk alongside people as they adjust to life without the dead person. Whilst it is a national organisation with headquarters in Richmond which set policy and standards, the day to day administration is devolved to local areas. He explained the workings of Buckinghamshire Cruse and the training they provide for volunteers so they can deliver face-to-face, telephone, email and group support along with support for children and young people. People can self-refer to the service and will be allocated a counsellor after an initial telephone assessment.
Alison Penny from the National Bereavement Alliance described how the membership organisation had grown from a desire of a number of interested parties and organisations to work together to improve policy and practice surrounding bereavement. Alliance members collaborate strategically to provide a collective voice representing the needs of bereaved people and those supporting them to help ensure that people have awareness of and access to support throughout their bereavement journey. There is a wealth of information about their work and details of how to join on their new website.
Rosaleen Cowie, the Buckinghamshire lead for Child Bereavement UK, explained how they work with bereaved children and adults who have lost a child. What started out initially as a small Trust in West Wycombe is now a much larger organisation with centres around the country. They work with schools to give children the support they need and they support families either through face-to-face sessions or group support. They also have a helpline and a website with award-winning publications and resources.
Doreen Beattie, a volunteer at Rennie Grove Hospice Care outlined how her Life Stories project with patients in Day Hospice can help with life, loss and legacies. She observed that grief and loss start long before death for patients and families and that the implications of mortality become reality as health declines. Taking part in the Life Stories project gives them a refreshing, illness-free focus for a while. The stories have three main values: that they won’t be forgotten; that they will be passed down through the generations; that they have something tangible to leave behind. Very often they form part of a patient’s eulogy at their funeral and they reflect how important legacy and reminiscence is in palliative care.
The final session of the day was entitled “The Good Grief Project – Creative Approaches to Bereavement” and was led by Jane Harris. Jane explained how her own experience of bereavement when her son Josh was killed in a road accident in Vietnam at the age of 22 had led her and her partner Jimmy to find creative outlets for their grief. They started the Good Grief Project three years ago to support families grieving after death and to help them look for new ways of expressing grief and pain such as photography, film, mindfulness, active exercise and creative writing. They also hope the project will promote an understanding of what it means to be grieving in a society that doesn’t talk about death.
Jane described how they planned a special Celebration of Life for Josh rather than a funeral with no undertakers, church or crematorium and fully embracing Josh’s friends. Because they were filmmakers, they made a film of it. Jane also told about how they guessed the password to Josh’s ipod and that she took up running while listening to Josh’s music which allowed her to get to know Josh in a whole new way.
Jane talked about how people found it uncomfortable to be around them and that there was an expectation that they would move on after a while. This caused them to feel more and more isolated. They needed friends but many of them weren’t there. Jane showed a number of video clips and photographs and concluded that you can move forward in grief when you can express your continuing love and that everyone needs the courage to grieve in their own way.
Adrian Tookman then reflected on a great day which enabled those attending to think about the care they provide in the broadest possible sense and that it was really valuable to have knowledge and understanding of what others are doing.