Palliative and end of life care

What is Palliative Care?

Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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 patient’s illness and in their own bereavement; uses a team approach to address the needs of patients and their families; enhances 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, and includes those investigations needed to better understand and manage clinical complications. Palliative care can be provided by a range of health and social care staff and may be done alongside treatment intended to reverse particular conditions

World Health Organisation 2009

What is end of life care?

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

(One Chance to Get it Right report, produced in June 2014 by the Leadership Alliance for the Care of Dying People.)

Death, dying, and bereavement are accepted events in the course of each of our lives and it is extremely important that we learn from these events if we are to increase our understanding and to respond in ways that are meaningful for the individual.

Get the Palliative Care grab guide

Evidence indicates that many people with a learning disability experience inequalities in this area of care. For many, they are more likely to die at a younger age than the overall population. Secondly, they sometimes experience inadequate palliative and end of life care with individual need often overlooked. For some people with learning disabilities, those who are important to them and those who care for them, these challenges can result in unsatisfactory or suboptimal outcomes, at a time of profound distress, grief and often bewilderment.

Within this page you will find examples of good practice, information and downloadable resources relating to palliative and end of life care for people with learning disabilities

How can a Learning Disability Nurse bring their knowledge and skills into palliative care?

Sue Marsden is a Registered Learning Disability Nurse and an End-of-Life Care facilitator for learning disabilities at St Wilfred’s Hospice, Eastbourne. In this short video, Sue speaks about her role and experience of moving from the learning disability sector into palliative care. Sue shares the benefits of working across both specialist fields, what this means for patients and their families and how it makes a difference to end of life care.

Click on the images below to find out more.

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