End of life care, including patient and family experience, in the East Midlands is thought to be variable. We do not currently know how many people are supported to die in the place of their choice and most deaths occur in hospitals.

We aim to enable the health and social care system to support people to have a good death through identification of and addressing unwarranted variation in end of life care.

Definitions of Palliative and End of Life Care

The National Palliative and End of Life Care Partnership uses the terms ‘end of life’ and ‘palliative care’ as they are defined in the One Chance to Get it Right report, produced in June 2014 by the Leadership Alliance for the Care of Dying People.

End of life

Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with:

1. advanced, progressive, incurable conditions;
2. general frailty and co-existing conditions that mean they are expected to die within 12 months;
3. existing conditions if they are at risk of dying from a sudden acute crisis in their condition;
4. life-threatening acute conditions caused by sudden catastrophic events.

In General Medical Council guidance the term ‘approaching the end of life’ also applies to those extremely premature neonates whose prospects for survival are known to be very poor, and to patients who are diagnosed as being in a persistent vegetative state (PVS) for whom a decision to withdraw treatment may lead to their death.

Palliative care

The World Health Organisation has defined palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care

Provides relief from pain and other distressing symptoms;affirms life and regards dying as a normal process;intends neither to hasten or postpone death;integrates the psychological and spiritual aspects of patient care;offers a support system to help patients live as actively as possible until death;offers a support system to help the family cope during the patients illness and in their own bereavement;uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;will enhance quality of life, and may also positively influence the course of illness;is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Palliative Care

The National Council for Palliative Care describes palliative care as the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.

Palliative care aims to:

• Affirm life and regard dying as a normal process
• Provide relief from pain and other distressing symptoms
• Integrate the psychological and spiritual aspects of patient care
• Offer a support system to help patients live as actively as possible until death
• Offer a support system to help the family cope during the patient’s illness and in their own bereavement

We are supporting local providers and commissioners as they respond to the Leadership Alliance for Care of Dying People’s report One Chance To Get It Right and the Ambitions for End of Life Care.

In 2014 we established a local leadership group for end of life care with membership from across regional health and social care commissioning and provider organisations including acute hospital trusts, hospices, community health care providers, care homes, social care, clinical commissioning groups and general practice. East Midlands Ambulance Service and Health Education East Midlands are also part of the group and we have invited all Healthwatch groups from across the region to contribute.

Our network’s clinical leads are Dr Zahida Adam, Dr Satbir Singh Jassal and Dr Maelie Swanwick.