the opportunity and challenges for mental health ... · caring for terminally ill people. hospice...

The opportunity and challenges for

mental health professionals in

Palliative Care

marlina s.mahajudin-jf tri arimanto yuwana-agustina konginan palliative care & pain free development centre

dr.soetomo general hospital - school of medicine airlangga university Surabaya

msm-tay-ak pal RSDS/FKUA 1

topics

• Palliative Care in Indonesia

• Effective communication in Palliative care

• Interdiciplinary team

• Pain & total suffering

• End of life care

• Caregiver problems

• Bereavement


Hippocrates

• Greece in the 5th Century B.C. Father of Medicine

• Hippocratic Oath is still use as the basis of Indonesian Physician Oath

• Mankind continuously making researches

• Development of specialization and sub-specialization in medical science

• The fact many diseases could not be cured


To cure, seldom.

To relief, often.

To comfort, always.


More than 238.000

new cancer patients each year


More than 119.000

cases came in incurable stage.

1842 Hospice. Lyon, Perancis,

Mme Jeanne Garnier.


1879 Our lady’s Hospice, Dublin.

Irish Sister of Charity.

1905 St Joseph’s Hospice, London.

Irish Sister of Charity.

Palliative Care was started in 4th century by Fabiola, the Roman Woman.

1967

the Modern Hospice Movement

Dame Cicely Saunder

St Christopher's Hospice, London

Total Pain as the principle of the service


What is Palliative Care ?


What is palliative ?

• PALLIUM: a cloak worn by popes and archbishops

• •PALLIATIVE: to shield (cloak) or protect from the violence of illness

• •PALLIATIVE CARE: care aimed at maximizing quality of life, minimizing suffering when cure is no longer a reasonable expectation.


Definition of Palliative Care

• Palliative Care Definition World Health Organization, 1990

• Oxford Textbook Definition of Palliative Care, 1993

• Definisi Perawatan Paliatif Departemen Kesehatan RI, 1997

• American Board of Hospice and Palliative Medicine Definition of Palliative Medicine, 2000

• National Hospice and Palliative Care Organization Definition of Hospice, 2000

• Palliative Care Definition World Health Organization, 2005


Palliative Care is the active total care of patients whose disease is not responsive to curative treatment.


World Health Organization (WHO)

1990

Palliative Care is an integrated system of care that

: improves the quality of life, by providing pain

and symptoms relief, spiritual and psychosocial

support from diagnosis to the end of life and

bereavement.


World Health Organization (WHO)

2005

The differences :

• In 1990: Palliative Care is the active total care. In

2005 Palliative Care is an integrated system of care.

• In 1990: ……. whose disease is not responsive to

curative treatment.

In 2005: ……. from diagnosis to the end of life and

bereavement.


Pedoman Penanggulangan Kanker

Terpadu Paripurna (DepKes RI, 1997)

Perawatan Paliatif ialah semua tindakan aktif guna meringankan beban penderita kanker terutama yang tidak mungkin disembuhkan.


Falsafah yang mendasari Pelaksanaan Perawatan Paliatif (Pedoman PKTP DepKes RI , 1997)

Menjadi hak semua pasien untuk mendapatkan perawatan yang terbaik sampai akhir hayatnya. Penderita kanker yang dalam stadium lanjut atau tidak berangsur-angsur sembuh perlu mendapat pelayanan kesehatan sehingga penderitaannya dapat dikurangi. Pelayanan yang diberikan harus sedemikian rupa sehingga penderita dapat meninggal dengan tenang dan dalam iman.


Hospice

• “Hospice care is a compassionate method of caring for terminally ill people. Hospice is a medically directed, interdisciplinary team-managed program of services that focuses on the patient/family as the unit of care. Hospice care is palliative rather than curative, with an emphasis on pain and symptom control, so that a person may live the last days of life fully, with dignity and comfort, at home or in a home-like setting”.

- National Hospice and Palliative Care Organization


If you do remember :

1. The definition of palliative care

2. The clarification of active measures in the definition

3. The philosophical basis of the implementation of the palliative care.


INTEGRATED MODEL OF CARE (curative & palliative together)


BEREAVEMENT

PALLIATIVE CARE

= SUPPORTIVE, SYMPTOM ORIENTED

CURATIVE CARE

= DISEASE SPECIFIC, RESTORATIVE

Diagnosis Dying Death

INTERDICIPLINARY TEAM WORK !!!

Principles of Palliative Care


Symptom control Psychosocial care

Disease management

No single sphere of concern is adequate without considering the relationship with the other two. This usually requires genuine interdisciplinary collaboration

holistic approach

HUMANBEING =

bio-psycho-socio-culturo-spiritual

Each patient has rights to receive a proper care

until the end of life



Palliative care is an approach that 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.

(http://www.who.int/cancer/palliative/definition - 2013)

http://www.who.int/cancer/palliative/definition

MULTIPROFESSIONAL TEAM

• Doctor • doctor specialist • nurse • psychologist • social worker • therapist (Occupational/physio etc.) • Volunteer/support group • spiritual healer, ulama, priest • Attorney, notary public, lawyer • family/caregiver

coordination INTERDICIPLINARY TEAM


THE INTERDICIPLINARY TEAM


Team work


Together Everybody Achieve More

The Interdiciplinary team

• Assess & manages patient with the full spectrum advanced, progresssive, life threatening conditions.

• Coordinates, orchestrates, facilitates key events in patient care

quality of life improvement


Interdiciplinary team

• Advance care planning

effective communication goal setting & strategy

be careful : language barrier

egocentricity

• Advance directive

confidential Principles: for the whole team???

psychiatric/psychological problems

just warning shots

msm-tay-ak pal RSDS/FKUA 28 msm412 28

Grey Area • Should a psychiatrist treat (eg) - psychomotor epilepsy / seizure - dementia conflict with the neurologist ? • Who should do the Family therapy, the psychiatrist or

psychologist? • Back to each basic education : ethics - professional standard - Collegial Competence

Prioritize : Patient's Need and Family through an effective communication


CORE

• Integrated Interdiciplinary team

• Quality of life improvement

• Effective Communications

• End-of life care & meaningful-life

• Pain & total suffering

• Caregivers problems

• Ethics - Medicolegal

• Bereavement & grief therapy


COMMUNICATION IN PALLIATIVE CARE


COMMUNICATION

COMMUNICATION IS SKILL & ART

• ART : taking the skill and figuring out how to apply it in a specific situation

• SKILL : specific types of verbal and non verbal actions to get results


Three important things

in palliative care: life-limmiting condition

1. Basic care in communication

2. Special communication Information delivering

Therapeutic dialog

3. Communication with family/caregivers and other professionals


effective communications • 3 basic quality :

– openess & honesty • self awareness

• self acceptance

• ability to express thought & feelings

– non-posessive love • hospitality

• respectful

• affectionate

• apreciation

• warm hearted

– empathy

(BOLTON, 1979)


Communication in the End-of-life care setting

• Advance care planning (interdiciplinary team)

• Pain management

• Breaking bad-news

• Planning for “the meaningful-life”

• Good death

• Last will

COLLABORATIVE DECISSION MAKING!!


Key strategies for Effective communications

– Develop and sustain trust

– Preserving dignity of the patient and family • Encouraging the patient and family to tell their life story

• Giving the patient or family choice whether to discuss sensitive issues/needs

• Treating the patient and family with utmost respect and politeness

• Checking patients’ awareness

• Using a hierarchy of euphemism

• Pausing after bad news is confirmed or broken

• Eliciting patients’ concerns and feelings

Maguire P., Weiner J.S. 2009


THE ART OF LISTENING



LISTENING Ear

Eye

Focused Attention

King Heart

LISTENING

empathy

• empathy allows others to feel justified in their attitude, supported and free to be themselves.

• it creates a bond of trust and understanding, a respect between partners that unites them on many levels

Roet B. 2003


the importance of empathy • people’s personalities consist of thoughts, feelings and attitudes

and the feeling component being the most powerful

• understanding the feeling of others is a major part of understanding them as individuals

• being accurately connected to one’s emotions make them feel as if they are really known by you, being understood and being loved

• ignoring their emotions will make them feel rejected

• knowing our own feelings is very important, as it may make it easier to be aware of others emotion

Roet B. 2003


BREAKING BAD NEWS


WHAT MUST BE TOLD ?

MEDICAL FACTS ABOUT PATIENT’S ILLNESS

WHO MUST TELL ?

PRIMARY DOCTOR

WHOM TO TELL ?

PATIENT AND/OR SIGNIFICANT OTHERS

PARENTS IF CHILD


WHY IS IT DIFFICULT ?

• DOCTOR’S OWN PERCEPTION ABOUT DEATH

• SOME DOCTORS FEEL INADEQUATELY PREPARED OR INEXPERIENCE

• FEAR THAT IT WILL BE DISTRESSING AND MAY GIVE ADVERSELY EFFECT TO THE PATIENT, FAMILY & THERAPEUTIC RELATIONSHIP

RELUCTANCE


WHEN SHOULD IT BE CONVEYED ?

• THE SOONER THE BETTER

• PATIENT STILL HAVE A CLEAR MIND TO MAKE ANY DECISION/PLAN

Prepare for the meaningful life


AUTONOMY & JUSTIFIABILITY


THE RIGHT TO INFORMATION

CONCERNING THEMSELVES

OBLIGATION TO PRESERVE

BOTH PHYSICAL & EMOTIONAL

WELL-BEING

TRUTH TELLING IS NEITHER DESTROYING HOPE

GIVING FALSE HOPE

Disclosing the truth without losing hope

Advance care planning : base on ethic and legallity

• Withholding or withdrawing treatment

• Artificial nutrition

• Artificial hydration

• Justice and resources allocation

• Do Not Resuscitate (DNR)

• Sedation in the imminently dying

• Terminal confusion and terminal sedation


RESPONDING TO FEELINGS ………

• AFFECTIVE RESPONSE • TEARS, ANGER, SADNESS, LOVE, ANXIETY, RELIEF,

OTHER

• COGNITIVE RESPONSE • DENIAL, BLAME, GUILT, DISBELIEF, FEAR, LOSS,

SHAME, INTELLECTUALIZATION

• BASIC PSYCHOPHYSIOLOGIC RESPONSE • FIGHT - FLIGHT

CONTINUED…..


………. RESPONDING TO FEELINGS

• BE PREPARED FOR

• OUTBURST OF STRONG EMOTION

• BROAD RANGE OF REACTIONS

• GIVE TIME TO REACT

• LISTEN QUIETLY, ATTENTIVELY • ENCOURAGE DESCRIPTIONS OF FEELINGS

• USE NON VERBAL COMMUNICATION



Spiritual desintegration & Moral crississ

Spiritual pain

Spiritual alienation

Spiritual anxiety

Spiritual guilt

Spiritual anger

Spiritual loss

Spiritual despair

Be careful !!!

takes time & guidance

PAIN & SUFFERING



Social

Pain

Psychological Cultural

Spiritual Physical

Symptoms

Total Suffering

Total suffering

Physical pain Psychological pain

Social pain

Spiritual pain

Financial pain

Beaurotical pain +

TOTAL SUFFERING


Psychologic Lipowsky’s Ascribed Meaning :

1. Challenge

2. Enemy

3. Punishment

4. Weakness

5. Strategic

6. Relief

7. Irreparable Loss

8. Value


PAIN MANAGEMENT

Optimal

Quality 0f life


COMMUNICATION!!!!

Pain management

• Holistic approach

mind the non physical pain

• Manages the psychosocial and spiritual distress in the patient and family

• Use the non opioid and/or opioid pharmacologic options


END OF LIFE CARE


Elisabeth Kübler-Ross reactions to impending death

• shock & denial

• anger

• bargaining

• depression

• Acceptance

life-limmiting condition



NEEDS OF THE DYING

• physic • free from symptom

• Psyche • feeling secure • to be understood • to be respected

• Social • to be accepted • to be involved • free from responsibility

• Spiritual • to be loved • to be forgiven • pride • The meaningful life

SPIRITUAL NEEDS

• Man lives in three dimensions: the somatic, the

mental, and the spiritual. The spiritual dimension

cannot be ignored, for it is what make us human

(Victor Frankl).

• In addressing the concerns of people who are

dying, the appreciation of the fullness of life will

increase with an enhanced ability to define our

purpose, our values, and our ownlife goals.

Kuhl D., 2009


Spiritual Intervention

Spiritual ? Values & religiosity

Life value : Meaningful Life Religiosity : Improve

Hope

Reality


The meaningful life

• Life is too short

• Accept the the truth

• Finnished patient obligations /task realistically

• Improving spirituallity

• Prepare a supportive family


MIND BE CAREFUL

• PASSIVE EUTHANASIA

AUTONOMIC ABUSE

• SUCIDE ATTEMPT

SELF-DESTRUCTION

SELF-NEGLECT

MEDICAL RECORD :

PSYCHOLOGICAL AUTOPSI


CAREGIVER PROBLEMS


Caregiver ?

• Family member

• Friends

• Untrained/Trained assictance.

• Professional health provider

- nurse

- social worker

- clinical psychologist

- doctors

msm-tay-ak Pal RSDS/FKUA 65

Caregiver’s problems

• Human being : own family own planning for the future • Career & hobby (me-time) • The difficult patient • The non-communicative doctor – team • Caregiver ‘s personality - anniversary reactions - too perfect - no helping trait

SYMPTOMS OF BURN OUT

• Feelings of depression. • A sense of ongoing and constant fatigue. • Decreasing interest in work. • Decrease in work production. • Withdrawal from social contacts. • Increase in use of stimulants and alcohol. • Increasing fear of death. • Change in eating patterns. • Feelings of helplessness. • Sleep pattern changges

Causes of burn out

• Role confucing

• Unrealistic hope

• Lack of control (finance, job, education)

• Unreasonable demmands (perfectionism)

• Other factors: self-care/wellness

Respite program

• Caregiver’s burn out needs break/holliday • The patient is admitted to hospital patient center How about : Respite Zone Hospice movement Social support group


ETHICS & MEDICOLEGAL


• Autonomy

• Beneficence

• Non maleficience

• Confidentially

• Veracity

• Justice

Respect towards Human being

( human dignity and human rights )


Medical Ethics

Medicolegal ?

• Informed concent

• Advance directive (testament)

- last will

- appointing person

- Last minutes requests

• Curattele /custody

• The family decission


The difficulties

psychiatrist decissions ? (UU RI 18/2014)

- competence to stand trial

- terminal sedation

- brain death termination

- parenting capability &child custody

- elderly caregiver/guardian


Assesment of mental capacity

• Can they understand the information given?

• Can they retain the information given?

• Can they balance, weigh up or use the information?

• Can the person communicate their decision?

If the answer to any of these is ‘no’ then

the person does not have capacity



Capacity in decision making

Understood the disease and the medical interventions

Understood the consequences of the medical interventions

To choose and to decide the right medications

To communicate (express ) clearly own’s thought / opinion

Crissis - opportunity

• Moto : do everything

do something

do nothing ?????

add life to years not years to life

• The patient : Dying with dignity

• The family : survive


Assessment of legal capacity in Indonesia

ASSES BY A TEAM • UU RI no 36 tahun 2009 tentang kesehatan - Bab IX pasal 150 ayat 1 vis et rep oleh psikiater ayat 2 oleh tim CHAIRED BY A PSYCHIATRIST • UU KESEHATAN JIWA no 18 tahun 2014 - Bab VI pasal 73 ayat 1 oleh tim ayat 2 pimpinan psikiater


BEREAVEMENT


Determinants of grieving

• Who the person (deceased) was

• The nature of attachment

• Mode of death

• Historical antecedents

• Personality variables

• Social variables


bereavement - grief - mourning

• bereavement : the situation / reactions

after a loss

• grief : the personal experience after loss

(psychological reactions)

• mourning : the process that occur after

loss (stages)


Grieving and culture

Examples : belief

• Pain : the more pain, the better

borne again into a good life

• Dying at home (the last precious moment)

vs no corpse at home

• The loss of a son is more painful

the loss of family line

• Restricted expression of feelings

shameful or taboo to expose family affairs

Chan & Chow,2006 msm-tay-ak pal RSDS/FKUA 81

Religion and bereavement (Braam in Huguelet & Koenig,2009)

• Faith to God lessen the pain and shorten the period of bereavement

• Personal relationship with God resembles a secure attachment to a primary caregiver

• After rituals and traditional practices, all the family and friends departed being alone ?


THE TASKS 0F MOURNING (Worden,1991)

TASK 1 : to accept the reality of the loss

TASK 2 : to work through to the pain of grief

TASK 3 : to adjust to an environment in which the deceased is missing

TASK 4 : to emotionally relocate the deceased

and move on with life


The task of mourning Doka (in Puchalski,2006)

+ • Task 5 : rebuilding faith and philosophical

systems that are challenged by

loss


ABNORMAL GRIEF REACTIONS UNCOMPLICATED MOURNING

– CHRONIC GRIEF REACTIONS

– DELAYED GRIEF REACTIONS

– EXAGGERATED GRIEF REACTIONS

– MASKED GRIEF REACTIONS


the opportunity and challenges for mental health ... · caring for terminally ill people. hospice...

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