Experience of care week: Palliative, End of Life and Bereavement Care

We understand talking about dying is never easy. There are a lot of taboos surrounding death and dying and the concept of dying can prompt different reactions to people depending upon their previous experiences or knowledge.

Talking about dying with people you love and care about can be even more difficult, because so many powerful emotions can emerge – love, fears, anger, frustration, sadness, isolation, sensitivity, vulnerability – which impact on feelings and reactions.  Added to this when a person is dying in hospital both the person dying and their family/carers find themselves in a new unknown environment with a new routine.

Therefore, at this time the NNUH palliative care team want to support the patient and family and they offer all patients referred to them a holistic assessment to ensure comfort and dignity at this important time, by assessing physical, psychological/emotional, social, and spiritual needs.  The team also offer support to the family members.

This is an important time for the patient, family, and clinical team, and as Dame Cecily Saunders, the founder of the hospice movement, quite rightly says “we only have one chance to get it right”. Therefore, it is important to ensure there is timely and sensitive communication with the patient and with their consent the next of kin/carer/family.

Based on family and carers feedback of care in the hospital the following things are available for Carers/next of kin. We appreciate there is still more to do though

  • Carers beds so family member/s can stay overnight in the same room as their loved one
  • Carers packs – to provide essential items to make a carer’s stay easy such as shower gel, toothbrush/paste, flannels, deodorant, tissues
  • Butterfly volunteers who offer companionship/respite to the patient/carer
  • Open visiting so family can visit when they want and stay as long or as little as they want
  • If one family member is staying, refreshments can be offered to them by the bedside
  • Written information about what to expect as their loved one reaches the end of life
  • Free car parking for the main carer
  • Carers passport – supports free parking and discount on meals in the main canteen
  • Spiritual healthcare from the chaplaincy service who also offer bereavement support
  • Soon to be published a carers leaflet which will inform the carer of what is available in the hospital

To support the staff in delivering care to our patients at the end of their lives we have listened to both carers and staff feedback and offer education and support both emotional and practical on the ward to further assist all staff caring for patients who are dying and those important to them including

  • Competency based education – ensuring staff are competent and skilled to offer compassionate and individualised care tailored to the needs of the patient and their families
  • Communications skills training courses based on job role
  • Support from chaplains and palliative care team to provide the care they do

For further advice and information on end of life

Hospice UK I’m looking for hospice care | Hospice UK  and Support for carers | Hospice UK

NHS website  What end of life care involves – NHS (www.nhs.uk)

NHS England NHS England » Palliative and end of life care

Cancer Research UK Caring for the carer when someone is dying | Cancer Research UK

Macmillan Cancer Support Palliative and end of life care (macmillan.org.uk)

Carers network End of Life Carers – Carers Network (carers-network.org.uk)

Marie Curie Information and support (mariecurie.org.uk)

For further advice on bereavement

Supporting yourself AtaLoss.org is the UK’s signposting and information website for bereaved people

Information and links Norfolk County Council Bereavement support – Norfolk County Council

CRUSE Bereavement support Supporting other people – Cruse Bereavement Support or call 0808 808 1677

Marie Curie Supporting a someone who has been bereaved (mariecurie.org.uk)

The National Bereavement Service Bereavement Services: Free Support for Bereaved People (thenbs.org)

Coping with Bereavement – Wellbeing Norfolk & Waveney (wellbeingnands.co.uk)

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