End of Life Care Education MODULE 1 Module

End of Life Care Education MODULE 1 Module 1 Introduction to Palliative Care

Learning objectives Why talk about it/Need How our patients are dying? Is dying costly in India? Palliative care and EOLC– The continuum What is good death/Principles and Components What is end of life care? Objectives, Principles Scope of palliative care in EOL Infrastructural requirements Barriers for EOLC provision Way forward EOLC – End of Life Care EOL – End of Life

Why talk about it Worldwide 377 adults/100, 000 population and 63 children<15 years of age need End of Life Care (EOLC) annually In India 1 million new cancer patients every year, 80% stage IV diagnosis Only 1/3 of patients who need palliative care have cancer. 2/3 have non malignant cardiorespiratory illness, HIV etc. Emerging elderly population, 100 million elderly at present – cancer incidence 11 times more likely in elderly Economic Intelligence Unit report on quality of death 2010 – India is the worst place to die, Ranking 40 out of the 40 countries studied Human rights watch report 2009 – Unbearable pain – India’s obligation to ensure palliative care – raises serious concerns about lack of palliative care in India

Why talk about it World Health assembly 2014 recommendations – mandatorily Integrate palliative and end of life care at all levels of health care Inadequate pain and symptom control and lack of access of essential medications for same amounts to torture/cruel inhuman degrading treatment (Special report of United nations 2013) Palliative care access very limited across India with exception to few places Access to Morphine and other controlled substance for pain and symptom relief extremely limited Public awareness on EOLC non existent Health-care providers have limited knowledge on EOLC provision and only few centres have the infrastructure to support the same

How our patients are dying 83% of healthy Indian population – prefer to die at home (Kulkarni et al Pune study IJPC 2014) – but mostly they die in the hospital 78% of patients with advanced illness in end of life phase in ICU left hospital against medical advice (LAMA) due to lack of resources Almost all LAMA patients did not receive any form of symptom relief measures in end of life period and died miserably Patients are dying in the wards and at home with no symptom relief, health related communication or support Significant number of patients dying with advanced illness in ICU with needless inappropriate interventions done – most of these patients dying alone in pain and distress.

Is dying costly in India? >80% of health care spending in India is out of pocket In most of the cases, financial resources are spent on last few days of life – mostly for high end needless medical interventions with no outcomes Maximum amount of money is spent on investigations (usually done for recording purposes only) Out of pocket spending pushes over 20 million patients into poverty every year This requires a huge attitudinal shift among health care providers as current medical education is based on Acute Model of Care (i. e. Diagnose and Treat).

Palliative Care and End of Life Care – The Continuum

Palliative Care and End of Life Care – The Continuum Disease Management Supportive Care Symptom Control PALLIATIVE CARE Supportive Care HOSPICE CARE Symptom Control END OF LIFE CARE

Palliative Care and End of Life Care – The Continuum Transitions in life-limiting illness Early Disease containment Decompensation Experiencing life limiting illness Maintaining function Transitions DIAGNOSIS Transitions Dependency and symptoms increase Transitions PALLIATIVE CARE Time Modified from Mc. Gregor and Porterfield 2009 Decline and terminal Transitions Death and bereavement Transitions EOLC

Palliative Care and End of Life Care – The Continuum End of life care cannot be initiated de novo. EOLC is an extension and part of palliative care Entering the EOLC phase is a period of transition. Early and good palliative care facilitates smooth transition Transition to EOLC involves recognition of EOL, EOLC decision making, EOLC communication and initiation of EOLC not only involves the immediate life before death but also involves the process of dying, after death care and care in the bereavement period.

What is good death? Principles To know when death is coming, and to understand what can be expected To be able to retain control of what happens To be afforded dignity and privacy To have control over pain relief and other symptom control To have choice and control over where death occurs To have access to information and expertise of whatever kind is necessary To have wishes respected and have access to any special needs To have control over who is present and who shares the end To be able to leave when it is time to go and not to have life prolonged pointlessly

Components of good death Pain and symptom management Control of current pain and physical symptoms and reassurance that future symptoms like severe pain, extreme shortness of breath, delirium etc. will be promptly managed. Clear decision making Reducing the fear of pain and inadequate symptom management through communication and clear decision making with physicians and empowering the families in decision making. Preparation for death Helping patients know what they could expect during the course of their illness and helping them to plan for the events that would follow after their deaths.

Components of good death Completion Knowing the importance of spirituality or meaningfulness at the end of life and dealing with faith issues, life review, resolving conflicts, spending time with family and friends, and saying good-bye. Contributing to others It involves acknowledging and making provisions for a terminally ill patient to contribute for the well being of the others. This contribution can be in the form of donations, sharing knowledge and experience etc. Affirmation of the whole person It involves affirming the patient as a unique and whole person and not understanding the patient from disease perspective, but understand in the context of their lives, values, and preferences.

What is end of life care? Objectives End of life care is a multidisciplinary team approach towards total care for people with advanced, progressive, incurable or life limiting illness so that they can live as well as possible before they die. The process of care is not just limited to the person who is dying but extends to his/her families and caregivers. Objectives of end of life care q To achieve a ‘Good Death’ for any person who is dying, irrespective of the situation, place, diagnosis or duration of illness. q Emphasis on quality of life and quality of death. q Acknowledge that good end of life care is a human right, and every individual has a right to a good, peaceful and dignified death.

Principles of EOLC Family/Care givers should be prepared, educated and feel supported Care givers should be involved and empowered to provide EOLC Health care providers should be accepting and anticipating that patient is dying and willing to provide EOLC Achieve good control of pain and physical symptoms Preferred place of care should be respected. Preferred place of care should be safe and secure with few crises. Health care providers should feel comfortable, confident and should be able to foster a sense of teamwork.

Scope of palliative care in EOL Relief of end of life symptoms such as pain, dyspnea, delirium, and respiratory secretions. Review of existing care protocols (medical/nursing) Review of medication chart and stopping unnecessary medication Stopping routine and unnecessary investigations that may not contribute to the process of care Continued communication throughout the process Counseling regarding optimal hydration and food intake Psychosocial support to patient, family and caregivers Meeting special family requests (religious/spiritual/cultural)

Infrastructural requirements Policy Presence of a guiding hospital policy Awareness and implementation of policy Space and staff Specially allocated area in the hospital Since room for privacy Round the clock staff Education/Training Education to doctors, nurses, social workers and all involved health care professionals on end of life care and end of life care pathway Hands on training and mentorship to junior staff

Infrastructural requirements Documents End of life care pathway (structured and tailor made to suit individual health care setup) Standardised forms on withholding and withdrawing life support Patient information leaflet on end of life care Special support Contact details of religious leaders to meet end of life religious needs Clinical psychologists to meet extreme grief reactions Contact details of funeral directors/undertakers to facilitate after death care Contact information of embalmers/body transfer ambulances etc.

Barriers for EOLC Physician associated barriers Lack of EOLC knowledge, Treating EOL patients acutely and inappropriately, Fear based practice, Economic incentives Legal/Policy barriers Lack of national/institutional policy, Lack of clear legal framework Societal barriers Prevalent social and cultural norms. Social acceptance Patient/Family barriers Constant search for cure, non acceptance of EOLC concept/philosophy

Way forward Advocacy for End of Life Care Advocacy at various levels to improve access to good EOLC and advocate for dignified death for all patients with life limiting illness irrespective of situation or diagnosis End of life care policy Work towards a national end of life care policy and suitable/effective legislation related to issues in EOLC. Encourage hospitals/health institutions to have institutional EOLC policy. Process of end of life care Create standard EOLC user manual, standard EOLC policy appropriate to Indian socio-cultural context and develop algorithms for management of EOL symptoms

Way forward Implementation of EOLC at grass root level Palliative and EOLC to be part of all hospital and home based programs. EOLC to be incorporated in management non-malignant conditions and HIV Developing EOLC standards Ensure quality EOLC through creation of suitable EOLC training programs, manuals and tool kits and monitor implementation of these standards through national/international accreditation agencies. EOLC Education All health care professionals involved in direct patient care should undergo mandatory EOLC certification program. EOLC education to be part of UG/PG health curriculum

THANK YOU This education program is a joint initiative of Indian Society of Critical Care Medicine and Indian Association of Palliative Care. 2014 © All rights reserved