Palliative Care Lecture 1 PDF

UNDERSTANDING PALLIATIVE CARE Dr. Meryem ERCEYLAN “You matter because you are you. You matter to the last moment of your life and we will do what we can not only to help you die peacefully but to live until you die” (Dame Cicely Saunders) Palliative Care Palliative care is a term derived from Latin...

UNDERSTANDING PALLIATIVE CARE Dr. Meryem ERCEYLAN “You matter because you are you. You matter to the last moment of your life and we will do what we can not only to help you die peacefully but to live until you die” (Dame Cicely Saunders) Palliative Care Palliative care is a term derived from Latin palliare, " to cloak, deceive, or cover.“ What is Palliative Care? ▪ Palliative care is is a multidisciplinary approach and specialized medical care for people with serious illness. ▪ It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness ▪ The goal is to improve quality of life for both the patient and the family. ▪ It is appropriate at any age and at any stage in a serious illness and is provided along with regular disease treatment. Definition of palliative care World Health Organisation (WHO) -2002 describes 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 including physical, psychosocial, and spiritual issues.’’ Palliative care: "a support system to help patients live as actively as possible until death” (WHO 2004). Palliative Care Provides relief from pain and other symptoms Affirms life and regards dying as a normal process Intends neither to hasten death nor postpone death Integrates the psychological and spiritual aspects of patient care Palliative Care Offers a support system to families, including bereavement Uses a team approach Enhances quality of life and at times may positively influence the course of a disease Is applicable early in the course of an illness and in conjunction with other life prolonging therapies Hospice is one facet of palliative care Kinds of Care Curative Care: Focuses on a cure to an illness and the prolonging of life. Palliative Care: Focuses on comfort and quality of life that may be provided with other treatments. Hospice Care: Focuses on comfort and quality of life when a cure is not possible with specialize care and services. Palliative Care is Delivered Concurrent with Disease Treatment Core competencies in palliative care Specialty palliative care Integrating Palliative Care into Chronic LifeLimiting Disease Management “best care possible” 100 Bereavement % clinical efforts 0 Terminal phase Time Death Palliative Care & Hospice Hospice is a “type” of palliative care for those who are at the end of their lives. Division made between these two terms in the United States Palliative care can be provided from the time of diagnosis Palliative care can be given simultaneously with curative treatment Both services have foundations in the same philosophy of reducing the severity of the symptoms of a sickness or old age Other countries do not make such a distinction Palliative Care & Hospice Palliative Care Hospice Comfort Care Hospice a specific form of palliative care supplied by an agency the most widespread, developed way to provide palliative care for patients at or approaching the end of life provided in home, at nursing homes, hospitals, or at a hospice residence can reduce the risk of depression in a spouse even when provided to the loved one a few days before death refers to a philosophy of care that seeks to support dignified dying or a good death experience for those with terminal illness It involves a core inter disciplinary team of professionals and volunteers who provide medical, psychological and spiritual support for the patients and family HISTORICAL PERSPECTIVES OF HOSPICE CARE The term first developed from the word hospitality by a physician Dame Cicely Saunders in the year 1960 for dying patients, who is the founder of the First modern hospice St.Christopher‘s in London 1969 – Psychiatrist Elizabeth Kubler Ross explained about 5 stages of death in his book -on death and dying- which emphasis the need of death and dying NEED OF PALLIATIVE CARE-WHO Palliative care improves the QoL of patients and their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well. Each year, an estimated 40 million people are in need of palliative care; 78% of them people live in low- and middle- income countries. Worldwide, only about 14% of people who need palliative care currently receive it. NEED OF PALLIATIVE CARE-WHO The global need for palliative care will grow as a result of the ageing of populations and the rising burden of non- communicable diseases and some communicable diseases. Benefit- Early delivery of palliative care reduces unnecessary hospital admissions and the use of health services. Palliative care involves a range of services delivered by a range of professionals Why do Organizations Need Palliative Care? 1. 2. 3. Concentration of risk for poor quality and spending lies in a small subset of patients Strong evidence that palliative care improves quality, satisfaction, and cost appropriateness There are very few strategies that simultaneously improve quality and reduce spending Palliative Care Drives a Positive Patient Experience Palliative Care Improves Cost Effectiveness Who is palliative care for? Who is palliative care for? Who receives Palliative Care? Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illnesses such as Cancers- breast, cervix, lung, oral, Cardiovascular disease -Congestive heart failure (CHF), Neurological disorders - Amyotrophic Lateral Sclerosis (ALS) HIV/AIDS Chronic obstructive pulmonary disease (COPD), Alzheimer Issues addressed in palliative care Palliative care can address a broad range of issues, integrating an individual’s specific needs into care. The physical and emotional effects of cancer and its treatment may be very different from person to person. Physical – Emotional and coping – Practical – Spiritual Issues addressed in palliative care Physical: Physical symptoms such as pain, fatigue, loss of appetite, nausea, vomiting, shortness of breath, and insomnia can be relieved with medicines or by using other methods, such as nutrition therapy, physical therapy, or deep breathing techniques. Emotional and coping: Depression, anxiety, and fear that can be addressed through palliative care. Experts may provide counseling, recommend support groups, hold family meetings, or make referrals to mental health professionals. Issues addressed in palliative care Practical: – Patients may have financial and legal worries, insurance questions, employment concerns, and concerns about completing advance directives. For many patients and families, the technical language and specific details of laws and forms are hard to understand. Spiritual: – An expert in palliative care can help people explore their beliefs and values so that they can find a sense of peace or reach a point of acceptance that is appropriate for their situation. Key Components of Palliative Care Recognizing symptoms such as pain, nausea, fatigue, breathing or swallowing difficulties, constipation, and hopelessness. Identifying the patient's goals and development of a palliative care plan, specially for the patient. Understanding that many patients and their families struggle to make decisions. Assisting with advanced care directives to help people formulate and communicate their preferences regarding care during future incapacity. Models of Palliative Care Hospice Care – a well-established program to provide patients with a prognosis of six months or less. These services can be provided in the home, nursing home, residential facility, or on an inpatient unit. Palliative Care Programs – institutional based programs in the hospital or nursing home to serve patients with life-threatening or life-limiting illnesses. Provide services to patients anywhere along the disease continuum between initial diagnosis and death. Outpatient Palliative Care Programs – occur in ambulatory care settings to provide continuity of care for patients with serious or life-threatening illnesses. Community Palliative Care Programs – occur in communities as consultative teams who collaborate with hospices or home health agencies to support seriously ill patients Domains of Quality Palliative Care Domain 1: Structure and Processes of Care Domain 2: Physical Aspects of Care Domain 3: Psychological and Psychiatric Aspects of Care Domain 4: Social Aspects of Care Domain 5: Spiritual, Religious and Existential Aspects of Care Domain 6: Cultural Aspects of Care Domain 7: Care of the Imminently Dying Patient Domain 8: Ethical and Legal Aspects of Care Domains of Quality Palliative Care 1. Structure and Processes of Care -interdisciplinary team assessment based on patient/family goals of care; prognosis; disposition (level of care – inpatient unit, home); safety 2. Physical Aspects of Care – pain, dyspnea, nausea/vomiting, fatigue, constipation, performance status, medical diagnoses, medications (add/wean) 3. Psychological Aspects of Care – anxiety, depression, delirium, cognitive impairment; stress, anticipatory grief, coping strategies; pharm/non-pharm treatment; patient/family grief/bereavement; 4. Social Aspects of Care – family/friend communication/interaction/support; caregiver crisis Domains of Quality Palliative Care 5. Spiritual Aspects of Care – spiritual/religious/existential; hopes/fears; forgiveness; 6. Cultural Aspects of Care – language, ritual, dietary, other. 7. Care of the Imminently Dying – presence; recognition and communication to patient/family education/normalization; prognosis (eg hours to days; very few days; etc) 8. Ethical & Legal Aspects of Care – decision maker; advance directives PRINCIPLES OF PALLIATIVE CARE MANAGEMENT Scope of care: Includes patients of all ages with life-threatening illness, conditions or injury requiring symptom relief from physical, psychosocial and spiritual suffering. Timing of palliative care: Palliative care should ideally begin at the time of diagnosis of a life threatening condition and should continue through treatment until death and into the family’s bereavement. Patient and family centred care: The patient and family constitute the unit of care which should be managed as a whole. PRINCIPLES OF PALLIATIVE CARE MANAGEMENT Holistic care: Palliative care must endeavour to alleviate suffering in the physical, psychological, social and spiritual domains of the patient in order to provide the best quality of life for the patient and family. Multidisciplinary care: A multidisciplinary team approach is essential to address all relevant areas of patient care. Effective communication: Good communication skills (including listening, providing information, facilitating decision making and coordinating care) are essential tools in palliative care and healthcare providers must develop this in order to provide effective palliative care. PRINCIPLES OF PALLIATIVE CARE MANAGEMENT Knowledge and Skills: Palliative care is active care and requires specific management for specific conditions. Seamless care: Palliative care is integral to all healthcare settings (hospital, emergency department, health clinics and homecare). How is palliative care provided? Who Provides Palliative Care? Usually provided by a team of individuals , Interdisciplinary group of professionals Who Provides Palliative Care? Nurses Therapists Pharmacists Physicians Patient and Family Home Health Aides Spiritual Counselors Social Workers Volunteers Approaches to Palliative Care Not a “one size fits all approach” Care is tailored to help the specific needs of the patient Since palliative care is utilized to help with various diseases, the care provided must fit the symptoms. Palliative Care Patient Support Services Three categories of support: 1. Pain management is vital for comfort and to reduce patients’ distress. Health care professionals and families can collaborate to identify the sources of pain and relieve them with drugs and other forms of therapy. Palliative Care Patient Support Services Three categories of support: 2. Symptom management involves treating symptoms other than pain such as nausea, weakness, bowel and bladder problems, mental confusion, fatigue, and difficulty breathing Palliative Care Patient Support Services Three categories of support: 3. Emotional and spiritual support is important for both the patient and family in dealing with the emotional demands of critical illness. For example, someone is diagnosed with breast cancer and is recommended to start chemotherapy and radiation treatments. The patient knows that chemotherapy will take a toll on their body. The patient is referred to a palliative care program for symptom management and receives treatment of their chemotherapy induced nausea and fatigue. Also, the patient is visited by a Medical Social Worker who helps them make good medical decisions. The patient may also receive weekly visits from a chaplain who prays with them and discusses theological questions. In this way the quality of life for this individual is greatly improved from the assistance received from a palliative care team. What does Palliative Care Provide to the Patient? Helps patients gain the strength and peace of mind to carry on with daily life Aid the ability to tolerate medical treatments Helps patients to better understand their choices for care What Does Palliative Care Provide for the Patient’s Family? Helps families understand the choices available for care Improves everyday life of patient; reducing the concern of loved ones Allows for valuable support system Where to find Palliative Care? In most cases, palliative care is provided in the hospital. The process begins when doctors refer individuals to the palliative care team. In the hospital, palliative care is provided by a team of experts. Settings for Palliative Care Outpatient practice Hospital Inpatient Unit based Consultation Team Home care Nursing Home Hospice PALLIATIVE CARE PLAN Palliative care plan includes – care goals – symptom management – advance care planning – financial planning – family support – spiritual care – functional status support and rehabilitation – co morbid disease management BARRIERS IN AVAILING PC Inadequate training of health care personnel in symptom management & other End of life skills Inadequate standards of care Lack of accountability in the care of dying patients Lack of appropriate information & resources Lack of investment in research pertaining to palliative & end of life care Barriers to the development of palliative care It includes, - poverty - population density - geographic distances - opioid availability - work force development and - limited national palliative care policy Palliative care developments around the world The rise of hospice and palliative care in its distinctly modern guise (combining clinical care, education, and research) is generally traced to the late 1950s and early 1960s. A 1999 listing of palliative care organizations with a global perspective also includes, - British Aid for Hospices Abroad - the Hospice Education Institute - WHO Collaborating Centre for Palliative Cancer Care, Oxford - Other groups include WHO experts and international collaborators and WHO collaborating centres in Milan, Saitama, and Wisconsin. Palliative care developments around the world It is estimated that hospice or palliative care services now exist, or are under development, on every continent of the world, in around 100 countries The total number of hospice or palliative care initiatives is in excess of 8000 and these include – inpatient units – hospital-based services – community-based teams – day care centres, and – other modes of delivery Palliative care developments around the world International associations and initiatives in support of hospicepalliative care 1973 International Association for the Study of Pain, founded Issaquah, Washington, USA 1976 First International Congress on the Care of the Terminally Ill, Montreal, Canada 1980 International Hospice Institute, became International Hospice Institute and College (1995) and International Association for Hospice and Palliative Care (1999) 1982 World Health Organization Cancer Pain and Palliative Care Palliative care developments around the world 1990 Hospice Information Service, founded at St Christopher‘s Hospice, London, UK 1998 1998 - Poznan Declaration leads to the foundation of the Eastern and Central European Palliative Task Force (1999) 1999 Foundation for Hospices in Sub-Saharan Africa founded in USA 2000 Latin American Association of Palliative Care founded 2001 Asia Pacific Hospice Palliative Care Network founded 2002 UK Forum for Hospice and Palliative Care Worldwide founded by Help the Hospices HISTORICAL PERSPECTIVES OF HOSPICE CARE The term first developed from the word hospitality by a physician Dame Cicely Saunders in the year 1960 for dying patients, who is the founder of the First modern hospice St.Christopher‘s in London 1969 – Psychiatrist Elizabeth Kubler Ross explained about 5 stages of death in his book -on death and dying- which emphasis the need of death and dying PALLIATIVE CARE IN TURKEY Palliative care expanded with The Pallia-TURK (Palya-Tuerk) project, which is considered one of the most important building blocks in Turkey. PALLIATIVE CARE IN TURKEY It has 437 Palliative Care Center with a total number of beds of 6,397 Thank you