Palliative care of advanced dementia A patient centered approach

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. 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. 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. 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. 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. 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. 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. 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

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. 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

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. 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. Symptoms Bio Pain Non-pain symptoms Psychological issues Social issues Spiritual issues Presentation of these symptoms is skewed Palliative care symptoms and cognitive impairment

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

16. Notes Questions / feedback: Please contact VJ Periyakoil periyakoil@stanford.edu hospice@va.gov ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________ ___________________________________

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