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@stanford.edu. Main Message.

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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@stanford.edu


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

  • 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

  • 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

  • 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

  • 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

    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

    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

    • 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 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

    • 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

    • 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.


  • 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?

    • 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


    ???

    • Unpaid

    • Overworked

    • On-call 24/7

    • Sleep deprived

    • No social life

    • Poor support system


    Notes

    Questions / feedback:

    Please contact VJ Periyakoil

    periyakoil@stanford.edu

    hospice@va.gov

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