What is Palliative Care? DEFINITIONS PALLIATIVE CARE. Palliative & End of Life Care Services N E Lincs 28/09/2017 1

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1 What is Palliative Care? 1 DEFINITIONS Palliative Care: is the active holistic care of patients with advanced progressive illness. The goal of palliative care is achievement of the best quality of life for patients and their families. End of life care is: care for those approaching the end of their life and who are likely to die within the next 12 months. 2 PALLIATIVE CARE Palliative is derived from a Latin word pallium, meaning a cloak or cover. Thus, in palliative care, symptoms are cloaked with treatments whose primary or sole aim is to promote patient comfort. 3 1

2 WHO DEFINITION OF PALLIATIVE CARE (2011) Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening 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. 4 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 5 PALLIATIVE 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 6 2

3 PALLIATIVE CARE: 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. 7 THINKING POINT Where is palliative care provided? Who provides palliative care? 8 PALLIATIVE CONDITIONS Cancer Parkinson s disease Huntington s Disease Motor Neuron Disease M.S. C.O.P.D Pulmonary Fibrosis Dementia / Alzheimer's Heart failure Renal failure CVA Diabetes 9 3

4 WHAT SYMPTOMS MAY PALLIATIVE CARE PATIENTS HAVE? Pain Insomnia Nausea Vomiting Diarrhoea Constipation Dyspnoea Mucositis Cough Anorexia 10 WHAT PSYCHOLOGICAL NEEDS/ISSUES MAY THESE PATIENTS/FAMILIES HAVE? Denial Fear Change of identity Uncertainty Depression Unfinished business Anxiety Expectations Sadness Powerlessness Financial Anger 11 DEVELOPMENT AND HISTORY OF PALLIATIVE CARE Care Given to Dying In Any Society Reflects:- Knowledge and skills of carers Prevailing attitudes and beliefs Historically provision for dying patients provided by: Alms houses Institutions for the sick poor Charitable organisations 12 4

5 MOVING FORWARD Technological advances/ better knowledge about the of science illness. Advances in nutrition, public health and sanitation. Life expectancy up 81 years (2013) Medicalisation of death and dying still seen as failure by medical profession Unfamiliarity with death taboo subject Dame Cicely Saunders championed the care of the dying patients (1967 founded St Christopher's hospice). Government policy development around end of life 13 HOLISTIC CARE It is important to care for the whole person and to see them as just that; a whole person, not just a patient or diagnosis. It involves thinking about and assisting patients with the effects of illness on the body, mind, emotions, spirituality, religion, and personal relationships. Holistic care also involves taking into consideration social and cultural differences and preferences. Every person is their own individual. 14 HEALTH CARE PROFESSIONALS ROLE Urquhart (1999):- Nurses by exhibiting the basic human qualities of compassion, empathy and acceptance can begin to support, empower and offer hope to patients in their care and thus help to alleviate suffering 15 5

6 HOPE Hope has long been recognised as fundamental to the human experience. Hope influences health and adaption to illness. (Ersk M. Meaning of Hope in the Dying) 16 IMPACT ON PATIENT AND FAMILY OF A SERIOUS ILLNESS Living a restricted life Existing in social isolation Experiencing discredited definitions of self Becoming a burden 17 PHYSICAL Pain Management Effective symptom control Hunger Thirst Oxygen Sleep 18 6

7 Love Friendship Affection Not feeling a burden Trust Support Human Contact PSYCHOLOGICAL 19 SOCIAL Fulfil social role Needs of family Self esteem Involved in decision making 20 SPIRITUAL Sharing Thoughts Dependent on patient s beliefs and experiences Religion can be a part of spirituality for some people 21 7

8 ASSESSMENT/EVALUATION On going process Reassures patient that they are being monitored Enables evaluation of interventions Improvement/deterioration identified 22 COMMUNICATING INFORMATION Ensures transfer of information / continuity of care To record information/documentation Logical, clear and structured Pathways 23 GOOD PALLIATIVE CARE 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. Dame Cecily Saunders 24 8

9 PALLIATIVE AND END OF LIFE SERVICES IN N.E LINCS 25 SPECIALIST SERVICE PROVISION Macmillan Specialist Palliative Care Team MDT team which provides specialist assessment, advice and strategies to manage symptoms associated with life limiting disease. Working in care homes, community and hospital. 2 social workers, 2 welfare benefits advisors and 10 nurses Haven Team Provides health and social care and support to patients and their families/carers with palliative and end of life care needs in their own homes. 5 senior nurses and around 25 HCA s Macmillan Cancer Survivorship Support Team Provides Assessment and intervention for people who are living with and beyond cancer. St Andrews Hospice 8 Adult and 4 children/adolescent inpatient Bedded unit providing inpatient and day therapy for adults and children. 26 EOLC THE FACTS 66% of people wish to die at home 1 in 5 do. By 2030 that will decrease to 1:10 People in deprived areas are more likely like to die in hospital Inequity - Historical Services commissioned for End of Life Care for cancer. Higher than average deaths within care homes 24% national average 19%. 14% of deaths in a care home occur within 4 weeks. 27 9

10 HOW TO CONTACT THE TEAMS Single Point of Referral being piloted at present But until pilot completed refer to Macmillan Palliative Care Team St Andrews Hospice Haven Team in hours Monday-Friday 8am -5pm Out of Hours 5-10 pm /Weekends and Bank Holidays Living with and Beyond Cancer team