When someone is dying, we have only one chance to ensure that the care the patient and the people important to them receive is as good as it can be.
Dying people have the same right to high quality care as people with a curable illness. Some people may know they are dying and will talk openly about this; other people may find it difficult to talk about or may choose not to.
For the last couple of years, Dying Matters Awareness Week has challenged us all to answer a question: What Can You Do? How can we help ourselves, or families and our communities face up to death and bereavement In 2019, awareness week ran between 13th and 19th May asking the question: Are We Ready?
Leicester Hospitals have responded saying they recognise that every death, every patient and every family is different and so getting to know what is important to them is essential, helping to create an end of life care plan which is specific to each patient and family and reflects their values and goals.
Dr Julia Grant, consultant in palliative medicine at Leicester’s Hospitals said: “For most people, dying is something which happens as part of a chronic illness, such as heart failure or dementia and is, to some degree, expected. How we die is profoundly personal, however, the goal of care for people who are dying focuses on helping them to live well until the end of their life. This may include relieving suffering; helping people stay as well as they can; and helping them achieve goals that are important to them before they die.
“This care is often provided by a mix of professionals, including those skilled in palliative care. These professionals will want to ensure that everyone affected by a terminal condition (including families and carers) knows about the choices they have and what support is available to them at this difficult time. Often patients will have frequent contacts with healthcare services in the last months of their life and offers an important opportunity to involve them in decisions about their future care.
“We recognise the importance of a home death for some patients and do what we can to help this to happen, working alongside our colleagues in Leicestershire Partnership Trust on making sure that when it is important, we can get patients home quickly and seamlessly.
“We also recognise that a hospital is somewhere patients and families often feel safe and we want their experience to be as respectable as possible. One of the ways in which we ensure dying patients receive the care they need in the last days and hours of life is, with their consent, using a Butterfly symbol.
“This alerts staff who might not know the patient that this is a family that might need a bit more support or time. Our wards also continue to develop other innovative ways to support families. For example, one ward has purchased more homely bed coverings and electric candles to use at the bedside and our ITU holds regular services celebrating the lives of patients who have passed away.
“We also have a fantastic team of VALE Volunteers who are able to spend time with patients in their last days of life where family are struggling to reach them or need someone to be with their relative while they rest.
“We have recognised the importance of continuing to improve and review the care we provide in the last stages of life at Leicester’s Hospitals have agreed our first UHL End of Life Care Strategy for Adult Patients. Alongside this, we are developing a way to collect information which helps us to understand where we can make more improvements.”
Alongside the care given by healthcare professionals is the Chaplaincy, a diverse team that offers pastoral, spiritual and religious support to patients, carer’s, families and staff whatever their faith, tradition or outlook. The team includes Hindu, Christian, Muslim, and Sikh chaplains and a non-religious pastoral carer. They are also support by volunteers from various faiths and beliefs.
Having someone who can listen in confidence to your emotional needs and who is part of the wider hospital team but not involved in your treatment or physical care can be very beneficial. The Chaplaincy Team offers spiritual and religious support to people approaching the end of life that is appropriate their individual needs and preferences.
Jane Flint, non-religious Pastoral Carer at Leicester’s Hospitals said: “In the context of providing spiritual support to a diverse patient population, it is important to understand the meaning of spiritual support in a broad and inclusive sense. It is support which recognises and responds to the needs of the human spirit when faced with trauma, ill health or sadness and can include the need for meaning, for self-worth, to express oneself, for faith or religious support, or simply for a sensitive listener.
“When people approach the end of life, their need for meaning, peace or hope may move sharply into focus. Spiritual care begins with encouraging human contact in compassionate relationship, and moves in whatever direction need requires. For patients with religious beliefs, support in the last days and hours of life often includes having a chaplain of their or their family’s choice say prayers or perform religious rituals that they can take comfort from.”
The ‘VALE’ (Volunteers at Life’s End) team provide another really important service which helps by providing support at the end of life. Karen Murray, CNS in Palliative Care, coordinates the service.
Karen said “The Volunteers within our VALE team offer valuable time to sit with dying patients who may not have any visitors or to provide some respite to family who are staying for long periods of time. Recently some of the volunteers have sat with a patient whose family were unable to come in and visit.
“The family were reassured that their relative was not alone. The volunteer gave the patient a hand massage and provided a lot of comfort. We value the time that these volunteers offer to our patients and believe the end of life care we provide is better because of their input.”
When someone close to you is dying, it can be a frightening and bewildering time. At Leicester’s Hospitals we want you to feel you can ask for help and want you to be involved in the care of the person you love as much as you feel you want to.