Marie Curie

Written evidence from Marie Curie[1] (DWD 03)

 

Dying without dignity

Introduction

  1. Dying without Dignity showed what can happen to people with a terminal illness when they are failed by staff without adequate training and let-down by a system that struggles to provide effective support outside normal working hours.

 

  1. While the report highlighted a small number of cases where care had failed people at the end of life, we believe that a large number of people with a terminal illness experience poor quality or lack of care and that this is due to:

 

 

Equity of access to palliative care

 

  1. Poor access to palliative care is not uncommon for people with a terminal illness in England. Around 92,000 people who need palliative care miss out each year. That’s nearly a fifth of all deaths each year (Marie Curie, 2015, Changing the Conversation).

 

  1. Research commissioned by Marie Curie found that the people who miss out on palliative care tends to be those with a terminal diagnosis other than cancer and those over the age of 85 (London School of Economics, 2015, Equity in the Provision of Palliative Care).

Training for healthcare staff

  1. Poor access to palliative care can in part be attributed to poor training for healthcare professionals in recognising and attending to palliative care need. London School of Economics, 2015, Equity in the Provision of Palliative Care).

 

  1. A Royal College of Nursing (RCN) survey of 8,000 nurses found that half treated people at the end of their lives at least once a week, with many doing so on a daily basis. However, only a quarter said they had received specific training in providing care to people at the end of life (RCN 2015).

 

Out-of-hours access to palliative care

  1. The NICE standard for palliative care says that NHS Trusts should offer a minimum of 9-5, 7 day a week face-to-face access to specialist palliative care. As of 2014, only 21% of Trusts in England offer this (Royal College of Physicians, 2014, National Care of the Dying Audit for Hospitals, England).

 

  1. The lack of access to specialist palliative care at all hours can lead to situations like those of Mr C in Dying without Dignity, who experienced 14 attempts to reinsert a drip because junior doctors and the on-call anaesthetist did not realise Mr C’s veins were shutting down because he was close to death.

 

Communication with people and families

 

  1. The National Survey of Bereaved People – which asks people who have recently lost a loved one or family member – shows a large disparity between hospitals and other settings in terms of communication. Asked whether they had a supportive relationship with health care professionals in the last two days of their loved ones lives, around 30% of people whose loved one died in hospital strongly agreed with this statement compared to around 50% of those who experienced home deaths and around 66% who experienced deaths in hospice (Office for National Statistics, 2014, National Survey of Bereaved People).

 

  1. Overall, around 65% of people agreed or strongly agreed that they had a supportive relationship with healthcare professionals in hospital. However, this trails a long way behind other settings (hospice at around 91%) and this trend carries across all the questions on communication in the last two days.

 

September 2015

 

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[1] Marie Curie is the UK’s leading provider of care and support for people affected by terminal illness. We provide care directly to people in their own homes through our nursing service and our nine hospices across the UK. We also provide a telephone support line and befriending support service. Marie Curie is the leading funder of palliative care research in the UK.