SEMINAR

SEMINAR

WORKING AT THE END OF LIFE NEED

FOR PSYCHOSOCIAL CARE

Presenter:

Harikrishnan U

1st year MPhil Trainee PSW

Supervisors:

Mrs.Buli Daimari Nag

&

Ms. Sabana Nasrin Islam

Department of Psychiatric Social Work,

LGBRIMH, Tezpur -2015

CONTENT

Introduction

Who - Definition of Palliative Care

Statistical Report

End-of-life Care in the Indian Context

Mental Health & End Of Life

Evidence Based Psychosocial

Interventions in Later Life

End Of Life and Social Work Perceptive

in Indian Context

Conclusion

Reference

INTRODUCTION

The focus of care should be “living life to the end”.

Palliative care approach - the quality of life of residents, and their

families

The goals of enhancing the quality of life for patient and family,

optimizing function, decision making and providing opportunities

for personal growth.

The World Health Organisation advises : prevention, relief of

suffering by means of early identification and impeccable

assessment and treatment of pain and physical, psychosocial and

spiritual needs (WHO, 2004).

CONT…

Palliative - at different locations and at different levels of

specialty, as follows:

Level 1 – Palliative Care Approach: appropriately applied by all

health and social care professionals in the Centre.

Level 2 – General Palliative Care: at an intermediate level, a

proportion of residents and families will benefit from the

expertise of health professionals who, although not engaged in

full-time palliative care, have had some additional training and

experience in palliative care.

Level 3 – Specialist Palliative Care: services which are limited,

in terms of their core activities, to the provision of palliative

care. Refer to Eligibility Criteria for access to Specialist

Palliative Care.

WHO DEFINITION - PALLIATIVE CARE

Improves the quality of life of patients and their families facing

the problem 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, physical, psychosocial and spiritual.

Palliative care:

Provides relief from pain and other distressing symptoms.

Affirms life and regards dying as a normal process.

Intends neither to hasten nor postpone death

Integrates the psychological and spiritual aspects of patient care

Offers a support system to help patients live as actively as

possible until death

CONT…

Offers a support system to help the family cope during the

patient’s illness and in their own bereavement

Uses a team approach to address the needs of patients and their

families, including bereavement counselling, if indicated

Will enhance quality of life, and may also positively influence

the course of illness

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 (WHO 2008).”

STATISTICAL REPORT

Between 2000 and 2050, the proportion of the world's

population over 60 years will double from about 11% to 22%.

(WHO, 2014,http://www.who.int/ageing /en/)

India's population UN report said. "India has around 100

million elderly at present and the number is expected to increase

to 323 million, constituting 20 per cent of the total population,

by 2050," (The Economic Times, Oct 1, 2012).

March 1, 2012, the projected number stands at 98.5 million. The

number of “elder” people in India (60+ years) has increased by

54.77% in the last 15 years. (Census of India 2011).

END-OF-LIFE CARE - INDIAN CONTEXT

There is much less awareness about the cultural factors that are

involved in end-of-life care. Sensitivity to these factors is

essential to providing high quality care and satisfaction to

patients.

In India, patients from varied backgrounds.

needs - belief systems and values relating to life and death in

general.

various dimensions, such as class, religion, caste, community,

language, gender etc...

cultural variations in attitudes and values have important

practical implications for individuals making crucial medical

decisions.

Important for medical, paramedical and mental health

professionals - to provide effective and satisfying end-of-life care

to patients.

CONT..

Western Eastern

Values of

beneficence

and no

maleficence:

• priorities autonomy

& self-determination.

• care planning,

informed consent,

individual decision-

making and open

communication.

• influenced by

beneficence and no

maleficence.

• to encourage patient

hope even in dire

situations.

• Families may want

to protect the

patients by not

discussing death and

end-of-life decisions

directly.

CONT..

Ethical issues Western Other culture

Language • The healthcare professionals and the patients

create considerable barriers in communication.

Communication of

'bad news'• Right aware of the

seriousness of their

illness.

• Families may also

wish to avoid

conflict.

• Death is talked about

openly it may occur.

• Great deal of

importance to the

language and words

• Belief that words

have the power to

shape reality.

CONT..

Ethical issues Western Other cultural

Locus of

decision-

making

• focus is on the

individual autonomy

of the patient and his

or her right to making

decisions regarding

treatment.

• emphasis both on

the individual

afflicted with the

illness and the

family and

community.

• Eastern European

medicine has had a

long tradition of

physician-centred,

paternalistic decision-

making.

• In Asian, Indian and

Pakistani cultures,

family members and

physicians may

share decisional

duties.

CONT..

Ethical

issues

Western Other cultural

Informed

consent:

• informed consent

is considered

extremely

important, as it is

seen as

reinforcing the

patient's right to

self-

determination.

• individuals are unfamiliar with

the process of considering

various treatment alternatives

and making a choice.

• many cultural traditions, the

healer and the afflicted person

is hierarchical, where the

doctor is seen as all knowing.

Advance care planning: relates to making decisions in advance

about what kind of treatment one wishes to have. It includes

features such as living will and do-not-resuscitate orders.

CULTURAL FACTORS - RELATED TO

PSYCHOSOCIAL ISSUES IN END-OF-LIFE CARE

Western and Eastern perspectives of life and death:

• Western philosophy Cartesian dualism, which sees death as

opposite to life. Modern biomedicine, death tends to be regarded

as a medical failure.

• Non-Western philosophies, death is seen as part of life; dying is

subsumed within life.

• Most ancient spiritual traditions, including Hindu, Christian,

Buddhist and Jain philosophies, see death as a normal stage of

life and as imbued with meaning.

• Life and death are seen as one whole, where death is a part of

life.

• Death is also seen as a temporary phase, since it is eventually

followed by rebirth.

Patients' responses and needs:

• Patients' responses to serious illnesses are determined by their

values relating to life and death.

• Many Eastern traditions, detachment is considered an important

value.

• Vedanta tradition, the core of one's being is seen as eternal (i.e.

the Atman).

• Detachment from the gross physical body is aimed at in order to

achieve higher consciousness.

• Buddhist practitioners often prefer that family and friends do not

disturb the mental peace of the dying person by crying around

him or her.

CONT..

Coping with death and dying:

• In helping the dying patient to cope, the mental health or palliative

care professionals try to make some sense of the individual's dying

experience.

• This involves helping the patient to find meaning in his or her

painful experience.

• India - Increasing attention to the emotional and spiritual welfare

of dying patients.

Awareness contexts:

• The patient and the family are aware about the patient's impending

death.

• This 'awareness context' - important factor affecting how patients

and their families deal with death and dying issues.

CONT..

Glaser and Strauss identified four different awareness contexts.

• Closed awareness, neither the patient nor the family is aware of

the patient's condition; only the doctor is aware.

• Suspicion awareness, The patient has a suspicion that he or she

is nearing death but receives no such indication from the family.

• Mutual pretence, both the patient and the family are aware that

the patient is nearing death, but neither indicates this as they wish

to avoid an uncomfortable situation.

• Open awareness, both the patient and the family members are

aware about the patient's illness and they openly discuss the same

among themselves.

CONT..

HOSPICE MOVEMENT

one example of interdisciplinary end-of-life care.

not believe in aggressive cure

invasive, highly technologized and curative treatments that often

cause more pain and distress.

focus on providing gentle 'care rather than cure' to dying patients

for whom there is not much hope of cure from the illness.

In India, families are responsibility for caring for ailing and

dying people

Changing family structures and increasing mobility of families,

patients and their families today face considerable difficulties in

managing such care on their own.

Hospices are secular, Buddhism has had some impact on the

hospice movement, owing to its concern with 'Good Death' or

'Conscious Dying' movement.

In India, there is a Buddhist hospice in Bodhgaya, the

Shakyamuni Buddha Community Health Care Centre, which was

established in 1991.

Many values common to both Buddhism and the hospice

movement.

Both Buddhism and the hospice are guided by values of

compassion and wisdom. Willingness to serve and an emphasis

on ahimsa, that is, the duty to do no harm.

Buddhism and the hospice regard death as significant and provide

a practical metaphysic to deal with end-of-life issues.

CONT..

MENTAL HEALTH AND END OF LIFE

The Qualities Of Life between persons with severe and persistent

mental illness (SPMI) are experiencing a palliative illness and the

general population of people with palliative illness.

These commonalities are expressed as hope for control of pain

and other symptoms, control over levels of intervention to avoid

prolonging the dying phase, and control over maintaining

meaningful relationships.

The population of persons with SPMI and palliative illness to

achieve these goals of care has not been as well honored as

compared to other members of society.

The general psychological distress and depression in palliative

care included all types of illnesses (physical and mental).

The depression resulting from a terminal diagnosis undertreated

that covers the effectiveness of different screening tools, therapies

and strategies to improve the treatment of depression in palliative

care.

The mental health and psychological issues in end-of -life care is

extensive and covers of illnesses, therapies, assessment tools,

locations of care, and communication issues.

CONT..

Symptoms and signs of depression are common in geriatric

population. Suicide is also common in elderly population.

Dementia is another gradually progressive psychiatric disorder

with a sustained loss of intellectual functions and memory and

preserved consciousness causing dysfunction in daily living. It

poses a great burden on caregiver.

Majority of dementia patients have nonreversible conditions like

Alzheimer’s, vascular disorders, trauma and infections.

Geriatric assessment is a multidimensional, multidisciplinary

diagnostic instrument designed to collect data on the medical,

psychosocial and functional capabilities and limitations of

elderly patients.

CONT..

The geriatric assessment differs from a standard medical

evaluation

in three general ways:

(1) it focuses on elderly individuals with complex problems

(2) it emphasizes functional status and quality of life,

(3) it frequently takes advantage of an interdisciplinary team

of providers.

Five I's of Geriatrics, include intellectual impairment,

immobility, instability, incontinence and iatrogenic disorders.

CONT..

EVIDENCE BASED PSYCHOSOCIAL

INTERVENTIONS IN LATER LIFE

Health Cognitive and Mental Health

Conditions

o Cancer

o Cardiac Conditions

o Diabetes

o Pain

o HIV/AIDS

o Dementia

o Depression and Anxiety

o Substance abuse

Late Life Social Roles

o End of life

o Family Care givers

o Grand parents care givers

END OF LIFE AND SOCIAL WORK

PERSPECTIVE IN INDIAN CONTEXT

End of Life and Indian Family

The family plays a central role at the time of terminal illness ordeath.

The family acts as the locus of the decision-making process,taking into account the economic cost of available medical care.

Social work in the multidisciplinary team in India

The team that attends to palliative patients consists of doctors,nurses and volunteers (2- 3).

The volunteers are given training Programme for 16 hours, thedoctors and the nurses are also given training.

Social Workers are usually engaged for home visits to givepsycho social care and rehabilitation

Social work’s specific contribution to families, close friends and

the social environment in India

Social workers can organize awareness Programmes to the wider

community on the need and scope of palliative care.

Motivate needy patients to home based palliative care.

Educate the Community on the importance of rendering quality

life to dying.

Encourage the families with terminally ill to look after them at

home as much as possible.

Family education on the last stage of Family life cycle to the

families of the terminally ill and the aged.

Render Family counseling, geriatric counseling, grief counseling

etc.

CONT..

What extent can social workers become engaged in “end of life”

care?

The social workers could help in fund raising, physical care,

spiritual support and emotional support to the parent and to the

family members.

Educating the family members on the pain management

techniques administered.

During the end of life, the patient is made to give suitable

comfortable position, proper ventilation, reduce the by- standers,

if any obstacles it has to be removed, the relatives are to made.

The relatives are made to accept to prepare for the death, they

have to be calm and quiet, at times they are to be provided with

grief counseling.

CONT..

Spiritual well-being may become the primary goal for the

palliative care provider

End-of-life is a time of re-examining or re-affirming personal

faith with the goal of achieving a peaceful death.

Participation in religious rituals can be an important priority for

terminally ill patients and their families.

Spiritual well-being influences psychological functioning, such as

anxiety and depression, in individuals with life-threatening

diagnoses.

Spiritual well-being has been shown to have a more powerful

effect on psychological functioning than beliefs about after life.

Palliative care practitioners are obliged to promote a sense of

well-being and to ease suffering in their patients in order to foster

a good death.

CONT..

Legal Perspective

In India legal opinion and legislation relating to end-of-life care is

scarce.

It is rather disturbing that there is no clearly stated legal opinion

regarding discontinuation of life support systems even in brain

dead patients.

According to the Supreme Court, the 'right to life' (a Fundamental

Right guaranteed under Article 21 of the Constitution of India)

includes the 'right of a dying man to also die with dignity when

his life is ebbing out.‘

CONT..

Life Support – Withdrawal /Withholding in Indian Law

The absence of guidelines for withdrawal and withholding of life

support in Indian law is perceived to be the most important

obstacle to the practice of appropriate end of life care.

In addition, physicians appear to be apprehensive about their civil

or criminal liability when called upon to make decisions to limit

life-supporting therapies.

Indian Law has no clearly stated position on any of the issues.

India needs to work towards developing the following laws in

order to facilitate end of life care:

1. Right to Refuse (informed refusal of) Treatment Act.

2. Withdrawal and withholding of Life-Sustaining Treatment Act.

3. Right to Palliative Care Act.

CONT..

Euthanasia in India

Black's Law Dictionary defines Euthanasia as 'the act or practice

of painlessly putting to death persons suffering from incurable

and distressing disease as an act of mercy.

On 7 March 2011 the Supreme Court of India legalized passive

euthanasia by means of the withdrawal of life support to patients

in a permanent vegetative state.

In the absence of a law regulating euthanasia in India, the court

stated that its decision becomes the law of the land until the

Indian Parliament enacts a suitable law .

Views of different religions and Medical Professional on the

Court Rule was looked into.

CONT..

End of Life and Palliative Care in India

Palliative care in India covers ‘the end of life’ services too and not

differentiated.

Mother Theresa’s missionary of charity at Kolkata is worth

mentioning. Following are the National Associations functioning in

the field.:-

Indian Association for Palliative Care

Indian Society for Critical Care Medicine

Indian Academy of Pediatrics

Medical Council of India

Many collaborating International organizations in India – WHO,

International Association of Hospice and Palliative Care, Help the

Hospices…

CONT..

The newer techniques in the practice of Palliative Medicine

Palliative medicine has grown into a sub-specialty of medicine

and has not restricted itself to only end-of-life-care.

Palliative medicine does not have many newer techniques to boast

of.

Nevertheless, interventional pain management like trigeminal

block, stellate ganglion block, epidural steroids, and intercostal

nerve blocks are roundly practiced.

Complimentary therapies like yoga, music therapy, and art

therapy have a major role to play in the well-being of patients

CONT..

The challenges in providing palliative care to patients in India

This extends from the providers to the beneficiaries of palliative

care.

The first challenge is to educate health care professionals on

palliative medicine.

The second challenge pertains to policies.

The government should adopt policies as part of the health care

programmes to make palliative care available to people.

There are short courses for doctors and nurses run by the Indian

Association of Palliative Care, in different parts of our country.

CONT..

Challenges in providing palliative care to patients in India

Non-availability of pain medication poses a challenge.

Licensed medications like morphine are not available in most of

the health care institutions in India.

Lack of a palliative care unit in most of the hospitals is yet

another challenge.

The patients and their relatives feel stigmatized and they all fear

that once they are referred to palliative care, their end would

come soon.

Barriers to the development of palliative care include poverty,

population density, geography, and workforce development.

CONT..

CONCLUSION

End of life care is support for people who are approaching death.

It helps them to live possible until they die and to die with

dignity. It also includes support for their family or careers.

End of life care includes palliative care.

Holistic approach, as it deals with the "whole" person rather than

just one aspect of care.

types of end-of-life care are hospice care, palliative care.

The focus of hospice is on comfort, not cure. Currently, patients

must be willing to give up curative treatments to receive

Medicare coverage for hospice care.

Palliative care is used effectively to provide relief from many

chronic conditions and their treatments, too.

Unlike hospice care, palliative care may be used for as long as

necessary.

REFERENCE

Marce.E.A & Gabe.J.M, (2011), Principles and Practice of

Geriatric Psychiatry Second Edition, Page no 251-264

Mary.V.J,(2012),End Of Life And Social Work – Indian

Perspective, Retrieved from online: http://www.susw.ch/fileadm

in/user_upload/2012/lectures/M._V._Joseph.pdf

(WHO, 2014, Retrived from online: http://www.who.int/ageing/e

n/

(The Economic Times, Oct 1, 2012) retrived from online

https://caregiver.org/selected-caregiver-statistics

Chandramouli.C, Census of India (2011). Rural Urban

Distribution of Population. Retrived from online

http://censusindia.gov.in/2011-provresults/paper

2/data_files/india /Rural_Urban_2011 .pdf

Global Journal of Medicine and Public Health.(2013). Retrieved

from website: www. gjmedph.org Vol. 2, No. 4 ISSN#- 2277-

9604

Mahajan.A & Anushree.R, (2013) The Indian elder: factors

affecting geriatric care in India, GJMEDPH; Vol. 2, issue 4,

Retrived from online: http://www. gjmedph.org/uploads/r2-

vo2no4.pdf

Shubha.R, (2007), End of life in the indian context: The need for

cultural sensitivity,

http://www.jpalliativecare.com/article.asp?issn=0973-

1075;year=2007;volume=13;issue=2;spage=59;epage=64;aulast

=Shubha

CONT..

Nancy.P.K, Capacity to Care: Building Competency in Geriatric

Mental Health CareEvidence Based Practices & Psychosocial

Interventions Retrived from online: http:

//fuquacenter.org/userfiles/AACAMHCapacityto%20CareFEB2

5EvidenceBasedPracticesNancyKrophPh_D_1].pdf

Zubia.V, (2013), The Perspectives on Including Palliative Care

in the Indian Undergraduate Physiotherapy Curriculum, Journal

of Clinical and Diagnostic Research. Vol-7(4): Retrived from

online: 782-786 00b7d53477cf302097000000.pdf

CONT..

Thank You