History and Evolution of Palliative Care PDF

H I S T O RY A N D EVOLUTION OF PA L L I A T I V E CARE D R. B H A GYA S E N A PA L A  Is palliative care only for dying patients? Is palliative care only needed for elderly? Is giving palliative care means giving up on patient? Is Palliative care given only for cancer pat...

H I S T O RY A N D EVOLUTION OF PA L L I A T I V E CARE D R. B H A GYA S E N A PA L A  Is palliative care only for dying patients? Is palliative care only needed for elderly? Is giving palliative care means giving up on patient? Is Palliative care given only for cancer patients? Should palliative care start after finishing conventional treatments? Does palliative care include only patient? PA L L I AT I V E C A R E I S …. A patient and family centered care. Provided for a patient with a life-limiting or terminal illness. Identifying and treating symptoms which may be physical, emotional, spiritual or social. Based on individual needs. Helping patients live their lives as fully and as comfortable as possible.  Early referral to palliative care can often prolong life and certainly supports a better quality of life. Palliative care does not replace patient’s usual care: it can be provided alongside regular medical care. H O S P I C E A N D PA L L I AT I V E CARE: Hospice is comfort care without curative intent; the patient no longer has curative options or has chosen not to pursue treatment because the side effects outweigh the benefits. Palliative care is comfort care with or without curative intent. S O M E K E Y FA C T S : Palliative care improves the quality of life of patients and that of 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 56.8 million people, including 25.7 million in the last year of life, are in need of palliative care. Worldwide, only about 14% of people who need palliative care currently receive it.  Unnecessarily restrictive regulations for morphine and other essential controlled palliative medicines deny access to adequate palliative care. Adequate national policies, programs, resources, and training on palliative care among health professionals are urgently needed in order to improve access. The global need for palliative care will continue to grow as a result of the ageing of populations and the rising burden of noncommunicable diseases and some communicable diseases. 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 that all have equally important roles to play – including physicians, nursing, support workers, paramedics, pharmacists, physiotherapists and volunteers –– in support of the patient and their family. W H Y I S PA L L I AT I V E C A R E I M P O R TA N T ? Palliative care is explicitly recognized under the human right to health. Addressing suffering involves taking care of issues beyond physical symptoms. Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling. It offers a support system to help patients live as actively as possible until death. Palliative care is explicitly recognized under the human right to health.  Palliative care is required for a wide range of diseases: cardiovascular diseases (38.5%) cancer (34%) chronic respiratory diseases (10.3%) AIDS (5.7%) diabetes (4.6%) other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis. B A R R I E R S T O PA L L I AT I V E CARE National health policies and systems often do not include palliative care at all. Training on palliative care for health professionals is very limited. Access to opioid pain relief is inadequate and fails to meet international conventions on access to essential medicines. Lack of awareness among policy-makers, health professionals and the public about what palliative care is, and the benefits it can offer patients and health systems.  Cultural and social barriers, such as beliefs about death and dying. Misconceptions about palliative care, such as that it is only for patients with cancer, or for the last weeks of life. Misconceptions that improving access to opioid analgesia will lead to increased substance abuse H O W D I D PA L L I AT I V E C A R E S TA R T ? Palliative care has its roots in the UK hospice movement, which began in the early 1960s in response to end-of-life needs of cancer patients who were often abandoned by medical professionals when treatment options failed. Palliative care subsequently evolved into a separate, but related field when its value was recognized to also meet the needs of patients with non-terminal conditions.  DAME C I C E LY SAUNDERS  Dame Cicely Saunders was born a century ago, on 22 June 1918. Over the course of her life undertook several roles, as a nurse, medical social worker, doctor and research lead, in order to develop and deliver her vision of palliative care. St Christopher’s Hospice, which Cicely founded in 1967, is widely recognized as the first modern hospice because it was the first to combine teaching and clinical research, pain and symptom control with compassionate care. In recognition of her significant services to the field of palliative care, Cicely was made a Dame of the British Empire in 1979 and awarded the Order of Merit in 1989. Cicely died in 2005 at the hospice she founded.  She established the charity Cicely Saunders International in 2002 and worked actively for the creation of a center housing research, education, information provision and clinical care. In partnership with King’s College London, the Cicely Saunders Institute was built in 2010 and acts as a vital hub for academics, healthcare professionals, community organizations, patients and carers. A striking feature of Cicely’s early work was her articulation of the relationship between physical and mental suffering. Cicely believed that there was no such thing as intractable pain and argued that if physical pain was alleviated, then mental pain was also relieved. She developed new record-keeping and pain control methods. Patients were given continuous pain relief and not forced to wait until their pain returned as they were at the time. She distinguished between pain levels, and she used medicines to relieve other problems such as breathlessness, bedsores, nausea, depression and constipation. EVIDENCE BASE STUDIES During the 1950s three important surveys of end-of-life care were undertaken. In 1952 a report based on the observations of district nurses throughout the UK of some 7050 cases, published by the Marie Curie Memorial Foundation. In which revealed appalling conditions of suffering and deprivation among many patients dying of cancer at home. 1960, Glyn Hughes had conducted a nationwide survey for the Gulbenkian Foundation “Peace at the Last. A Survey of Terminal C are in the United Kingdom”. This included widespread consultations, 300 site visits and contacts with 600 family doctors. This study revealed the inadequate facilities and care for the terminally ill patients, and raised the question of where and by whom the elderly terminally ill would be cared for?  In 1963 a unique detailed study of the physical and mental distress of the dying was published by John Hinton. His observations from the wards of a London teaching hospital showed that much suffering remained unrelieved and also how most patients were well aware of their prognosis despite the lack of information normally given at that time. PA L L I AT I V E C A R E I N AUSTRALIA Palliative Care Australia (PCA) is the national peak body for palliative care. Palliative Care Australia launched in 1998, developing from the Australian Association for Hospice and Palliative Care Inc which started in 1991. PA L L I AT I V E C A R E I N U S A Drs. Block and Billings were early pioneers of palliative care, and together became national leaders in the field’s development. Palliative care was recognized as a medical sub-specialty in the US in 2006. Interest in palliative care in the US lagged behind UK, Australia, and Canada until the 1990s, when the Open Society Institute established the Project on Death in America and the Robert Wood Johnson Foundation created the Last Acts Initiative. Drs. Block and Billings played an active role in both programs, conducting national faculty development programs and helping to establish a strong academic base for the nascent field.  J. Andrew Billings, MD, began practicing internal medicine at Massachusetts General Hospital (MGH) in 1975, where he developed a strong clinical interest in the doctor-patient relationship. “A small but steadily growing cohort of patients who died at home fostered my clinical expertise in end-of-life care, provided an intellectual challenge, and also the opportunity for me to become an institutional leader and innovator,” he wrote in 2007 (J Pal Med, Vol 10, 6, 2007 (1258-1260). He directed the first hospice program in Massachusetts and established the Palliative Care Service at MGH in 2005.  Susan Block, MD, trained in internal medicine and psychiatry in the late 1970s so she could provide both physical and emotional care to her patients. In 1998, she founded what became the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute (DFCI), which is still the only hospital program in the country that combines psychosocial oncology, palliative care, and social work. Dr. Block subsequently created the Serious Illness Care Program at Ariadne Labs, which promotes a systems approach to improving end-of-life care.  PA L L I AT I V E C A R E DEVELOPMENT IN ASIA PA C I F I C R E G I O N A S I A PA C I F I C HOSPICE PA L L I AT I V E C A R E NETWORK The Asia Pacific Hospice Palliative Care Network (APHN) is dedicated to promoting hospice and palliative care in Asia and the Pacific. Our purpose is to empower and support organizations and individuals committed to alleviating suffering from life-threatening illness. The Network promotes education and skills development, enhances awareness and communication, and fosters research and collaboration. We encourage established programs to assist less experienced and more isolated colleagues.  In 2001, APHN started with 14 founding sectors: Australia, Hong Kong, India, Indonesia, Japan, Korea, Malaysia, Myanmar, New Zealand, Philippines, Singapore, Taiwan, Thailand and Vietnam. Founding sectors will be permanent sectors of the association. On the 15th October 2015, a resolution was passed by the 15th APHN Council to accept Mongolia as the 15th Sector of the APHN. This was a new milestone for us as Mongolia was the first Sector to join the APHN since 2001. In 2019, Bangladesh, Nepal and Sri Lanka joined APHN as Sectors, bringing our total number of Sectors to 18.  PA L L I AT I V E C A R E I N I T I AT I V E S IN SRI LANKA Except for a few initiatives for home-based palliative care, it was limited to hospice care, until the early part of 2010. In early 2010 early initiatives were taken by the Sri Lanka College of General Practitioners. The aim was to sensitize health staffs, especially medical officers working in the state and private sectors with the support of a team of experts from Palliative Care Association, Kerala.  National Cancer Control Program (NCCP) Sri Lanka, also arranged a training program for the doctors and nurses. In 2017 Sri Lanka Medical Association (SLMA) formed a task force on palliative care and end of life care. They developed: Manual and guidelines relating to end-of-life care manual relating to palliative care for management of non-cancer patients Collaborated with the Ministry of Health Sri Lanka, in relation to many aspects of the development of palliative care services in the country Advocated for the start of postgraduate courses in palliative care at the Postgraduate Institute of Medicine (PGIM), University of Colombo.  Palliative Care Association of Sri Lanka was formed. The association also organized training programs for health professionals and caregivers. Postgraduate courses in palliative care were initiated at the Postgraduate Institute of Medicine (PGIM), the University of Colombo in 2017. National Cancer Control Program, Ministry of Health has issued guidelines in 2022 for Palliative Care for Cancer Patients in Primary Health Care.  PA L L I AT I V E C A R E D E L I V E R Y POINTS IN SRI LANKA Palliative Care Consult Services in the country Apeksha Cancer Institute Maharagama Teaching Hospital Ratnapura Lady Ridgeway Hospital for Children Colombo Teaching Hospital Karapitya Colombo South Teaching Hospital Kalubowila In addition to these clinics, palliative care services are arranged through Oncology clinics in all cancer treatment centers in the country. Community-based hospices in the country mainly managed by NGOs Sri Lanka cancer society – Shantha Sevana Hospice care Maharagama Cancer care Association Sri Lanka - Hospice at Kurundankulama, Anuradhapura and Hospice at Matara Sathya Sai Association - Sathya Sai Cancer Hospice, Hanwella Cancer Aid for North and East Sri Lanka [CANE] - Hospice at Chunnakum, Jaffna Eastern Cancer Care Hospice [EASCCA] - Hospice at Eravur, Batticaloa Palliative Care Association - Sahana Sevana, Abagahapura, Maharagama N AT I O N A L S T R AT E G Y / P O L I C Y Sri Lanka National Health Policy 2016-2025, mentions that the mainstream health system should provide palliative care to all the patients who need such care, for them to live and die with dignity. National Strategic Framework for Palliative Care Development (NSFPCD) in Sri Lanka, 2018-2022, was developed and launched in December 2019. National Strategic Plan in Prevention and Control of Cancer in Sri Lanka (2020 2024). N AT I O N A L S T R AT E G I C F R A M E W O R K F O R PA L L I AT I V E C A R E D E V E LO P M E N T I N S R I L A N K A 2 0 1 8 – 2 0 2 2  Overall goal: To improve quality of life of patients with life-threatening illnesses and their families by offering them a holistic support system for prevention and relief of suffering through evidence-based, multi- disciplinary and cost-effective approaches. The areas of support would include Pain and symptom management Psychological & emotional, social and spiritual support Support for families and caregivers to cope during the patient’s illness and bereavement period  Palliative care has been identified at the Health Master Plan 2016 – 2025. Strategies: 1. Ensure that palliative care is recognized and resourced as an integral component of the health system by making palliative care as an essential component of comprehensive health care. 2. Facilitate the effective integration of specialist palliative care and related services across all levels of service settings, namely at tertiary, secondary, primary and at community level. 3. Develop and make available skilled multi disciplinary human resources and infrastructure for delivery of palliative care services at institutional and at community levels. 4. Ensure that patients and their families receive palliative care services they need when and where required & adherence to protocols & guidelines in palliative care. 5. Ensure availability of essential drugs & technologies for provision of palliative care at all levels: tertiary, secondary, primary and community level. 6. Build partnerships with government and non-governmental organizations for delivery of palliative care. 7. Empower family members, care givers and general public for the provision of palliative care. 8. Encourage research related to palliative care in assessing needs for palliative care and suitable models for implementation of palliative care services. 9. Ensure adequate financing & resource allocation for cost effective delivery of palliative care. 10.Strengthen legislative framework for delivery of palliative care. 11.Ensure monitoring & evaluation framework for palliative care services. RECENT DEVELOPMENTS IN SRI LANKA: Suwa Arana, Sri Lanka’s first Pediatric Palliative Care Centre opened its doors for pediatric cancer patients in July 2023. The Indira Cancer Trust, a collaborative partnership with Sri Lanka Medical Association North American Western Region (SLMANAWR) and a collective of foundations, service organizations and family trusts. The donors for this pioneering Centre for Healing include the Roshan Mahanama Trust, Lions Club International Foundation (Lions District 306B2), MJF Charitable Foundation, Wijerama Family Foundation and The Prince Group, Australia. In addition, invaluable support has been extended by a host of individuals and families to sponsor rooms, which will ensure the Center’s sustainability going forward. Suwa Arana creates a home away from home for these children, completely free of charge, in a warm and supportive residential facility.  WORLD HOSPICE AND PA L L I AT I V E C A R E D AY It is observed annually on second Saturday of October This year it was celebrated on 14th October under the theme “Compassionate Communities: Together for Palliative Care”  Compassionate communities care for people, assist people to live in the place they call home, connect people to services, and raise awareness about end-of-life issues. Palliative care working alongside compassionate communities multiplies the ability to respond to the needs of the most vulnerable in our communities.  Is palliative care only for dying patients? Is palliative care only needed for elderly? Is giving palliative care means giving up on patient? Is Palliative care given only for cancer patients? Should palliative care start after finishing conventional treatments? Does palliative care include only patient?  references  Palliativecare.org.au  www.who.int  www.kcl.ac.uk  www.ncbi.nlm.nih.gov  pallcare.hms.harvard.edu  aphn.org  Development of palliative care services in Northern, Sri Lanka: A Guide for Implementation  WEEKLY EPIDEMIOLOGICAL REPORT A publication of the Epidemiology Unit Ministry of Health 06th– 12th Aug 2022  National Strategic Framework for Palliative Care Development in Sri Lanka 2018 – 2022