End of Life Care in the Elderly

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END OF LIFE CARE In the Elderly
Dr. S. K. Jindal www.jindalchest.com
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• Disease / Disability
• Age Death

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Is Aging a Disease?

• The fact that they tend to arise in the same part
  of the life span is not good evidence that they
  have similar underlying mechanisms ---------- not
  a common aetiology but a common teleology.
• Peto and Doll,
  BMJ, 1997

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TRAJECTORIES of Death
1. Sudden Death
2. Progressive Illness
Health Status
Health Status
Death
Death
Time
Time
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3. Slow decline and Crises
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Medicines shift in focus . . .

• Death denying Science, technology, communication
  has resulted in marked shift in values, focus of
  modern society Immortality
• Value productivity, youth, independence
• Devalue age, family, interdependent caring
• Death the enemy - fight aggressively against
  illness, death prolong life at all cost
  organizational promises sense of failure if
  patient not saved

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What do the Elderly need?

• Comfortable living
• Freedom from medical and psychological symptoms
• Freedom from burdens
• Family and social supports Home is the hospice
• Dignity of living (and dying)
• Preference of home for death
• Listening to the holy verses
• Meeting the relatives
• Less burdensome
• Last rites and rituals

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Gaps between reality and desires

• Fears
• Die on a machine
• Die in discomfort
• Be a burden
• Die in institution
• Exorbitant costs

• Desires
• Die not on a ventilator
• Die in comfort
• Die with family / friends
• Die at home
• Minimal expenditure

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Concept of Total Pain
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Symptoms, suffering . . .

• Multiple physical symptoms
• many previously little examined
• pain, nausea / vomiting, constipation,
  breathlessness
• weight loss, weakness / fatigue, loss of function
• Psychological distress
• anxiety, depression, worry, fear, sadness,
  hopelessness, etc
• 40 worry about being a burden, sometimes
  amounting to major conflicts in the family trend
  is constantly rising
• Social isolation Family and friends have other
  obligations, priorities

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EOL Care Doctors Attitudes Practices

Questionnaire (structured) study Questionnaire (structured) study Questionnaire (structured) study
Respondent characteristics (N 65) Respondent characteristics (N 65) Respondent characteristics (N 65)
Gender M 53 F 12 Gender M 53 F 12 Gender M 53 F 12
Place of practice Place of practice Place of practice
Medical schools 49 (75.4)
Hospital based Large 9 (13.8)
Small 7 (10.8)
Qualifications Qualifications Qualifications
Superspecialties 15 (23.1)
Postgraduate 50 (76.9)
Jindal 2004
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EOL Care in Elderly Attitudes ()
Yes No
1. Dignity of dying 97.0 3.0
2. Alleviation of symptoms 98.5 1.5
3. Access to non-conventional Tx 80.0 20.0
4. Patients right to refuse 90.8 9.2
5. Discontinuation on request 73.8 26.2
6. Fulfillment of wishes/choices 64.6 35.4
7. Incurability/death information 52.3 47.7
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Assisting Patients
Yes No/NA
1. Final decision on treatments 60.0 40.0
2. Withdrawal of supportive care (if irretrievable) 69.2 30.8
3. Belief in Euthanasia
Active 10.8 89.2
Assisted 16.9 83.1
Passive (withdrawal) 56.9 43.1
4. Ever involved (in LPT withdrawal)
Assisted 6.2 93.8
Passive 35.4 64.6
5. Advance DNR directives 64.6 35.4
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Who to Decide Treatment Withdrawal?
No. () No. ()
1. Family 26 (40.0)
2. Physician 2 (3.1)
3. Hospital Committee 5 (7.7)
4. Jointly 26 (40.0)
5. Legal opinion 2 (3.1)
6. No withdrawal 2 (3.1)
7. Dont know 2 (3.1)
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Life Prolonging Treatments-
Are they needed?

• Dying with dignity the right to die
• Preference to death than a vegetative life
• Limitations of LPTs
• Philosophical/ Religious view-point Limited
  number of breaths - ? Assisted/ artificial
  respiration
• Life after death philosophy
• Thou shall not strive intrusively to keep
  alive.
• Is there a place to switch over to Palliative
  treatment for Chronic progressive end-stage
  sickness?

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Current Status (LPT)
Refusal of treatment (Acceptance) Decision making Bearing costs
Individual Rare Sometimes Mostly
Family Rare Mostly Mostly
Hospital Variable Partially Significantly
Society No No Partially
Law Doubtful No Rarely
Includes medical team in-charge
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Palliative Care

• 1. To prevent, relieve or soothe the symptoms of
  disease without affecting a cure
• 2. To achieve the best possible quality of
  life
• 3. Not a substitute or an alternative to
  curative treatment
• Determinants Religion, Social, family and
  personal values, Financial issues, Regional
  differences

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Other Determinants

• 1. Disparities in standards of care
• 2. Alternative systems and practices of medicine
• 3. Societal needs (vs. medical resources)
• 4. Undefined laws and unclear legal status
• 5. Loose state-control over type of care

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Palliative Care relationship
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Pre-conditions for Palliative Care

• 1. Previously diagnosed and documented end stage
  disease
• 2. No recognizable and treatable or reversible
  cause
• 3. Exhausted curative treatments
• 4. Consent of the patient/ care-givers
• 5. Prevailing norms/ guidelines

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Existing Practices Spectrum

• 1. Home Hospital based
• 2. Conservative Aggressive
• 3. Acceptance Fighting
• 4. Religious Nihilistic
• 5. Palliative Curative

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The Evolving Issues

• 1. Fast expanding technology
• 2. Economic globalization
• 3. Wider media interest
• 5. Consumer Protection Act medical services
• 6. Increased litigations
• 7. Media trials

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Components of EOL

• 1. Symptom management
• 2. Preservation of Quality of Life
• 3. Active communication with patients and carers
• 4. Support of physical, psychological and
  spiritual well being
• 5. Ensuring that supportive and palliative care
  needs are met throughout the last phase of life,
  last rites and bereavement.

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Palliative Care in End-stage CRD

• Elderly - Presence of co-morbidities
• Poor tolerance to drugs/
  procedures
• No randomized controlled trials to demonstrate
  benefit of either pathway i.e. Dialysis and
  Conservative tmt. supported by palliative care.
• Adequate symptom control
• Fassett et al. Nephrology
  2011

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EOL Issues in End Stage CRD in Elderly

• 1. Communication Discussing Prognosis
  advance Care Planning
• 2. Policies regarding CPR and DNR
• Withdrawal from and withholding of Dialysis
• Hospice under-utilization Poor understanding of
  the hospice benefit (USA)
• Holley JL. US Nephro 2008

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Hindu Views on Death Dying

• 1. Death is opposite of birth (not life)
• 2. Denial of the finality of death (by affirming
  belief in the indestructible) reduces
  helplessness (in the face of death)
• 3. Karma gives a moral meaning to all events
  and action.
• 4. Quality of life is prized more than length of
  days
• 5. Good death at home
• 6. Death is a social event.
• S.
  Cromwell Grawford
• Hindu Bioethics for the 21st
  Century (2003)

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• For death is a certainly for him who has been
  born and birth is a certainly for him who has
  died. Therefore, for what is unavoidable, thou
  shouldest not grieve
• Bhagavad Gita
  2.27

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Telling the Obvious the death

• Circumspect attitude
• Inevitability not disclosed, Avoidance of words
  (e.g. death)
• Greater sanction for the Writ of the family (than
  the individual)

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Difficult QuestionsLife-prolonging Treatments

1. Right to refuse treatment ?
2. Who to decide options ?
3. Who to bear the costs ?
4. Responsibilities of the medical team ?

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Professional Practices Surveys
Jindal et al 1986, 2004
1986 2004
Telling the truth 69.2 52.3
Evasive / Masking 30.8 47.7
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The Hindu Belief

• Life after death philosophy
• Supreme sanctity of pre-death worships
• Last wish fulfillment
• Last rites and acts

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Palliative Care in Hinduism

• To prevent, relieve or soothe the symptoms of
  disease without affecting a cure
• To achieve the best possible quality of life
• Not a substitute or an alternative to curative
  treatment
• Supreme importance in Hinduism
• 
  Care beyond cure

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The Last Hours of Living Wishes, Rituals Acts

• Important concern of the individual and the
  family Last wish acts
• Avoiding death in the bed
• Water from the holy rivers The Ganges
• Holy verses
• Blessing the progeny
• Last words citation
• Do Not Resuscitate orders?
• Organ Donation ?

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Old Age, Disease and Death

• Death Inevitable Accumulated unrepaired damage
  to DNA, mitochondria and other structures Genetic
  inheritance Environmental factors
• Disease Abnormality of structure and/or function
  of an organ system
• Types Acute Chronic (subacute)
• Curable Fatal (controllable)
• Reversible Progressive (Static)
• Cause Genetic Environmental
  (Mixed)

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Care of the Elderly Sick

• Problems

• Terminal Care

• 1. Symptoms and suffering
• 2. Social isolation
• 3. Family on the edge
• 4. Financial pressures
• 5. Medical disinterest
• 6. Nihilistic approaches
• 7. Denial of death

• Symptomatic/ Palliative
• Financial
• Social
• Psychological
• Spiritual
• Physical and Medical

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Hospice (Vs. Hospitalization)

• Home is the hospice (Mostly)
• Preference of home for death
• Listening to the holy verses
• Meeting the relatives
• Less burdensome
• Last rites and rituals

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Medical Team Dilemmas

• 1. Information on futility
• 2. How far to go ?
• 3. How long to continue
• 4. Resource limitation
• 5. Who to look up to ?

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The Last Hours of Living

• Important concern of the individual and the
  family Last wish acts
• Avoiding death in the bed
• Holy verses
• Living with/ Blessing the progeny
• Last words citation
• Do Not Resuscitate orders?
• Organ Donation ?
• After death handling/ Rites Rituals Bereavement

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References

• Fassett RG, et al. Palliative care in end-stage
  kidney disease. Nephrology 2011 164-12.
• Holley JL. End of life issues in end-stage renal
  disease. Geriatric Nephrology 2008.
• Jeba SJ, Jindal SK. End of Life Care. In SK
  Jindal (Ed). Textbook of Pulmonary Critical
  Care Medicine. Jaypee Brothers Medical Publishers
  (P) Ltd., N. Delhi. 2011 pp. 2163-73.
• Jindal SK. Issues in the care of the dying. Ind
  J Med Ethics 2005 279-80.
• Jindal SK. Old age, disease and terminal care A
  Hindu perspective. In S Chatterjee, P Patnaik,
  VM Charian (Eds). Discourses on Aging and Dying.
  New Delhi Sage Publications. 2008 pp.217-25.

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