working with end of life a psycho-social care
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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.
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CONT..
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CONT..
Thank You
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