Palliative care of advanced dementia A patient centered approach

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Palliative care of advanced dementia A patient
centered approach

• VJ Periyakoil, MD
• Director, Palliative Care Fellowship Program
• Stanford University General Internal Medicine
• VA Palo Alto Health Care System
• Email periyakoil_at_stanford.edu

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Main Message

• Currently, patients with dementia do not get
  access to quality palliative care
• Access to quality palliative care can be
  facilitated only if we take an inter-disciplinary
  approach to care

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Talk Agenda

• Current state of palliative care for dementia
• Key challenges in providing palliative care for
  dementia patients
• Prognostication
• Decision making
• Advance care plan
• Symptom management
• Caregiver stress

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Prognostication questions in dementia

• Patients question How long do I have before
  my mind is shot?
• Health professionals question Is s/he
  eligible for palliative care?
• Familys question How long does s/he have to
  live ?
• Caregivers question I am exhausted. How much
  longer can I do this?
• Is dementia a terminal illness? If so, when do
  they start dying?

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Dementia hospice eligibility

• Stage 7 or beyond according to the FAST scale
• Unable to ambulate without assistance
• Unable to dress without assistance
• Unable to bathe without assistance
• Urinary or fecal incontinence, intermittent or
  constant
• No meaningful verbal communication, stereotypical
  phrases only, or ability to speak limited to six
  or fewer intelligible words
• Plus one of the following within the past 12
  months
• Aspiration pneumonia
• Pyelonephritis or other upper UTI
• Septicemia
• Multiple stage 3 or 4 decubitus ulcers
• Fever that recurs after antibiotic therapy
• Inability to maintain sufficient fluid and
  calorie intake, with 10 percent weight loss
  during the previous six months or serum albumin
  level less than 2.5 g per dL (25 g per L)

Schonwetter RS, Han B, Small BJ, Martin B, Tope
K, Haley WE. Predictors of six-month survival
among patients with dementia an evaluation of
hospice Medicare guidelines. Am J Hosp Palliat
Care 200320105-13.
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Decision making in dementia

• Hierarchy of decision making
• Pt with capacity
• Advance directive
• Health care proxy
• Living will
• Substituted judgment
• Best interests
• Competence v. capacity
• Special circumstances

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Special circumstances

• Case 1 Incapacitated pt with no proxy and
  unknown preferences
• Case 2 Chronically mentally ill pts with no
  capacity
• Case 3 Chronically mentally ill pts with
  fluctuating capacity

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Intact decision making prior to death in the
elderly
Lentzer HR et al The quality of life in the
year before death. Am J Public Health 82
1093-1098, 1992
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Interface between palliative care and dementia

• Clarity of decision making
• Soft balls ( relatively speaking)
• Advanced dementia with advanced other terminal
  illness
• Early dementia with early stages of other chronic
  illness
• Hard balls
• Moderate dementia with other terminal illness
• Dementia, terminal illness, infection and
  delirium
• Dementia and PTSD or depression
• Dementia and recreational ETOH/ drug use

The decisions themselves are never easy.
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Advance care planningShades of Gray

• Possible levels of care
• Full court press
• Hospitalize with DNR
• Hospitalize for reversible illness
• Do not hospitalize (DNH) treat to the extent
  possible
• DNH with comfort care

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Heroic life prolonging measures

• CPR
• Whopper no veggie
• Artificial nutrition
• Artificial hydration
• Antibiotics
• What are the goals of care?

James Hallenbeck, personal communication
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Tube feed or not tube feed? Thats the question

• The facts
• Effect on life span is an open question
• Increases suffering
• Need for better pt/family education
• Discussing benefits and burdens of therapy
• Use neutral language
• Separate facts from your opinion
• Please offer your opinion
• Make allowances for special circumstances.

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Palliative care symptoms and cognitive impairment

• Symptoms
• Bio
• Pain
• Non-pain symptoms
• Psychological issues
• Social issues
• Spiritual issues

• Presentation of these symptoms is skewed

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What does dying look like?

• Decline in functional status
• Lack of desire to eat or drink
• Withdrawn
• Sleep- wake state
• Mottling of limbs
• Jaw movement
• Death rattle
• Co-morbid symptoms

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???

• Unpaid
• Overworked
• On-call 24/7
• Sleep deprived
• No social life
• Poor support system

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Notes

• Questions / feedback
• Please contact VJ Periyakoil
• periyakoil_at_stanford.edu
• hospice_at_va.gov
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