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Press Release

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Title
Dying Matters Week: How we support people in the last weeks and days of life
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Press release date15/05/2018
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Summary
At Leicester’s Hospitals we believe that when someone is dying, caring for them and the people important to them is a priority. Dying people have the same right to high quality care as people with 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. We recognise that every death, every patient and every family is different and so getting to know what is important to them is essential.
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Press release

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 a profoundly personal journey, however.  The goal of care for people who are dying focuses on helping them enjoy as good a quality of life as possible.  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 life and so recognising when a patient needs more support and whose recovery may be uncertain, offers an important opportunity to involve them in decisions about their future care.”


“Although we recognise the importance of a home death for some patients and do what we can to help this to happen, we recognise that hospital is somewhere patients and families often feel safe and so we want their experience to be as good 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 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 died under their care.”


Alongside the care given by healthcare professionals is our Chaplaincy, a diverse team that offers pastoral, spiritual and religious support to patients, carers, 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/or religious support to people approaching the end of life that is appropriate their individual needs and preferences.


In the last weeks and days of life it is often important to patients to be supported by a person with similar beliefs to their own.  In recognition of the need for patient choice, in November 2015 Leicester’s Hospitals appointed the first non-religious Pastoral Carer in the UK to be employed in an NHS chaplaincy.


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.”


Our VALE (Volunteers at Life’s End) team provide another really important service which helps by providing support at the end of life.  Karen Murray and Val Olivant, CNS in Palliative Care coordinate 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. 


ENDS


Feedback from patients:

“My dad was in hospital for the last two months of his life. He told us about his visits from the non-religious Pastoral Carer. We could see how much it helped him feel calm, which helped us stay calm too. I’m so happy you were there for him.”


 “When you are seriously ill, you feel like you are putting so much pressure on your family and friends, so having the opportunity to speak with someone you’re not related to is really comforting,”


"Just a quick note to say thank you for your time the other day. It was very helpful for me to talk to someone secular about my terminal illness and how to handle it emotionally."


"I just want to say thank you for what you did for me last week. In the hours after dad died, I didn’t want anyone to talk to anyone. I just wanted someone to sit quietly with me. Sitting beside me in the hospital chapel was just want I needed."


"Thank you so much for being there for my mum and me during her last days. I didn’t know this kind of support was there.  I don’t know how I would have coped if you hadn’t been there when I couldn’t be. You also helped me think clearly about out some really difficult feelings. I know my mum would want to thank you too. Thank you so much."


"I want to let you know how much your prayers meant to my aunty. I am sure it helped to ease her passing. Your presence also meant a lot to our family."


“Our baby girl only lived for a few hours. We were so sad and in shock. We’re humanists. We didn’t want a religious ritual but felt we had to do something to mark the fact that this little being had been part of our lives. The nurse said the hospital had a Non-religious Pastoral Carer we could talk to. We had a naming and non-religious blessing for our baby. The Pastoral Carer read some really comforting words and gave us a lovely copy of those words to take home with us.”


Notes:

If you would like to interview our Chaplaincy Team please contact the Communications Team on 0116 258 8715/8644/ 8963.

More information about the last days and hours of life is available on the Dying Matters Website

Contact information:
Contact information
For further information please contact:
Tiffany Jones,
Tel: 0116 258 8963/ 07507 783217
Email: tiffany.jones@uhl-tr.nhs.uk
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Press release number
6606
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