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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@stanford.edu. Main Message.

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palliative care of advanced dementia a patient centered approach

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@stanford.edu

main message
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
talk agenda
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
prognostication questions in dementia
Prognostication questions in dementia
  • Patient’s question: “How long do I have before my mind is shot?”
  • Health professional’s question: “ Is s/he eligible for palliative care?”
  • Family’s question: “How long does s/he have to live ?”
  • Caregiver’s question: “ I am exhausted. How much longer can I do this?”

Is dementia a terminal illness? If so, when do they start dying?

dementia hospice eligibility
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 2003;20:105-13.

decision making in dementia
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
special circumstances
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

intact decision making prior to death in the elderly
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

interface between palliative care and dementia
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.

advance care planning shades of gray
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
heroic life prolonging measures
Heroic life prolonging measures
  • CPR
  • “Whopper no veggie*”
  • Artificial nutrition
  • Artificial hydration
  • Antibiotics

What are the goals of care?

* James Hallenbeck, personal communication

tube feed or not tube feed that s the question
Tube feed or not tube feed? That’s 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.
palliative care symptoms and cognitive impairment
Symptoms

Bio

Pain

Non-pain symptoms

Psychological issues

Social issues

Spiritual issues

Presentation of these symptoms is skewed

Palliative care symptoms and cognitive impairment
what does dying look like
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
slide15
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  • Unpaid
  • Overworked
  • On-call 24/7
  • Sleep deprived
  • No social life
  • Poor support system
notes
Notes

Questions / feedback:

Please contact VJ Periyakoil

periyakoil@stanford.edu

hospice@va.gov

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