About palliative & end of life care

The World Health Organisation defines Palliative Care as:

“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 is needed by people with incurable illness. It is increasingly needed and more complex as the illness advances.

The overall goal of Palliative Care is to achieve the best quality of life for clients and for their families. Specific aims are to:

• Provide pain and symptom control, avoiding inappropriate treatment.
• Create a support system that provides individual social, emotional, spiritual and practical care.
• Enable the person to live as actively as possible and to exert control,independence and choice. This will help them to participate in decisions, suchas the decision to die at home or to transfer to hospital or a care home.
• Provide emotional, spiritual and practical care for the person, their family and significant others during the illness and after death.
• Establish a team that comprises the person, their family, health and social care professionals ensuring effective communication between all members of the team.

Scottish Government recommends the following definition within its Strategic Framework for Action on Palliative and End of Life Care

“End of life care addresses the medical, social, emotional, spiritual and accommodation needs of people thought to have less than one year to live. It includes a range of health and social services and disease specific interventions as well as palliative and hospice care for those with advanced conditions who are nearing the end of life.”

Good end-of-life care is based on the understanding that death is inevitable, and a natural part of life. As the final stage in a person’slifeit is a uniquely important time for the dying person and their family and close friends.

The goals of end-of-life care are:

• to maintain the comfort, choices, and quality of life of a person who is recognised to be dying (in the terminal phase);
• to support theirindividuality;
• to care for the psychosocial and spiritual needs of thepersonand their families.

Support for familiesmay continueafter death as bereavement care.

End-of-life care also aims to reduce inappropriate and burdensome healthcare interventions and to offer a choice of place of care when possible.

Dame Cicely Saunders best describes the whole person approach:

“You matter because you are you. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully but to live until you die”. (quoted in Robert Twycross ‘A Tribute to Dame Cicely Saunders’, Memorial Service, 8 March 2006)

The aim of palliative and end of life care is to care for the whole person with dignity, taking into account mental, emotional and social factors, rather than just the physical symptoms of their disease. This means that good quality care of your client’s physical needs should be combined with building your relationship with the client, and understanding of who they are as a person.

The aim of care is to neither hasten death or to prolong life but to make living and dying as comfortable as possible. The dying person should always be the centre of this process.

All members of the care team have a role in enabling and encouraging the person to retain control as long as is feasible and do what they can themselves for as long as possible. The intention is to provide the dying person and their family with choices so that they can make shared decision making with their healthcare providers about their care.

Palliative and end of life care will be needed by any client with life limiting, non-curable illness, for example:

• Cancer
• End Stage Heart Failure
• COPD (Respiratory Disease)
• Multiple Sclerosis
• Motor Neurone Disease
• Combination of above

As a homecare worker you play a vital role in supporting the whole person. You help people to be cared for in a homely setting, whether their own homes or residential care, to live well on their own terms as much as possible in palliative care, and to die in the home setting if that is their choice.

Your role includes:

• Emotional and social support for the person and their families.
• Assisting in the provision of essential physical care, e.g. personal hygiene, mouth care, pressure area care, nutrition.
• Providing care for the dying.
• Respite care for family members and domestic support.
• Promoting a calm, safe environment.
• Working in partnership with the Primary Care Team e.g. District Nurse, GP, to reporting any changes, new symptoms or concerns.

The following are some of the key contacts involved in the wider team providing palliative and end of life care. You may want to keep a list of key contact details to help you connect with the wider team when you need to.

Primary and Community /Social Care

• Palliative and End of Life Care Coordinator
• GP
• District Nurse
• Palliative Care Nurse
• Social Worker
• Community pharmacist
• Community optician
• Minister/Priest/Other religious leader
• Bereavement Support
• Allied Health Professionals
• Equipment and adaptation service

Hospital

• Consultant
• Clinical Nurse Specialist
• Palliative Care Team
• Allied Health Professionals
• Hospital Pharmacist
• Community staff

Hospice staff

• Consultant
• Clinical Nurse Specialist
• Allied Health Professionals
• Complementary Therapist
• Bereavement Support

Scottish Government: Strategic Framework for Action on Palliative and End of Life Care 2016-2021 (2015)

Scottish Government: Health and Social Care Standards - My support, My life (2017)

NHS Education for Scotland (NES), Scottish Social Service Council (SSSC): Palliative and End of Life Framework (2017)

Healthcare Improvement Scotland (HIS): Scottish Palliative Care Guidelines (2015)

NHS Education for Scotland (NES): Informed about Palliative and End of Life Care (2018)

Macmillan Cancer Support: Learning Zone You can register to access the Foundations in Palliative Care learning resources from here.