Palliative care of advanced dementia : A patient centered ...

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  • Opening up to PC: eol care
    Shock value: Is it a terminal illenss.?
  • MHB: you have to be damn near dead:
  • Case 4: Suspicion of secondary gain
  • Issue: Methods: dementia per se
    Attitude objective: Moral: plan ahead.
    Some people that as soon you get AD, you lose abiltiy to make decisions.
  • What do you mean by “ simple”
    What is easy about advanced dementia?
    Danger of metaphors: deconstructing the metaphor requires shared knowledge.
  • What is important to patients
  • Whopper no veggie: It is a current directive. . It is not an advance “advance directive”
  • Palliative care of advanced dementia : A patient centered ...

    1. 1. 1 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
    2. 2. 2 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
    3. 3. 3 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
    4. 4. 4 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?
    5. 5. 5 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.
    6. 6. 6 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
    7. 7. 7 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
    8. 8. 8 Intact decision making prior to death in the elderly Alzheimer’s Disease T- 1 year 39% intact T- 1 month 24 % intact T- 1 day 8% intact Diseases other than Alzheimer’s T- 1 year 87% intact T- 1 month 78% intact T- 1 day 51% intact Lentzer HR et al “ The quality of life in the year before death”. Am J Public Health 82: 1093-1098, 1992
    9. 9. 9 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.
    10. 10. 10 Advance care planning Shades 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
    11. 11. 11 Heroic life prolonging measures • CPR • “Whopper no veggie*” • Artificial nutrition • Artificial hydration • Antibiotics What are the goals of care? * James Hallenbeck, personal communication
    12. 12. 12 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.
    13. 13. 13 Palliative care symptoms and cognitive impairment Symptoms • Bio • Pain • Non-pain symptoms • Psychological issues • Social issues • Spiritual issues Presentation of these symptoms is skewed
    14. 14. 14 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
    15. 15. 15 ??? • Unpaid • Overworked • On-call 24/7 • Sleep deprived • No social life • Poor support system
    16. 16. 16 Notes Questions / feedback: Please contact VJ Periyakoil periyakoil@stanford.edu hospice@va.gov ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________
    17. 17. 17 Notes ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________
    18. 18. 18 Notes ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________

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