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

End of Life Care Education

Module 1

Introduction to Palliative Care

MODULE 1

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 forwardEOLC – 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


Disease Management

Symptom Control

Supportive Care

Symptom Control

Supportive Care

Symptom Control

PALLIATIVE CARE HOSPICE CARE

END OF LIFE CARE

Transitions in life-limiting illness

Transitions

Early Disease containment

Maintaining function

Decompensation

Experiencing life limiting illness

Decline and terminal

Transitions Transitions

Dependency and symptoms increase

Transitions Transitions

Death and bereavement

Time

DIAGNOSIS

Modified from McGregor and Porterfield 2009

EOLCPALLIATIVE CARE



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 EOL

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

To achieve a ‘Good Death’ for any person who is dying, irrespective of the situation, place, diagnosis or duration of illness.

Emphasis on quality of life and quality of death.

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)


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


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