DEMENTIA AT THE END OF LIFE Jonathan T. Stewart, MD Staff Geropsychiatrist James A Haley VA Hospital Professor in Psychiatry and Geriatric Medicine University of South Florida College of Medicine
DISCLOSURES Dr. Stewart: no financial or other relationships to disclose
It is impossible that anything so natural, so necessary, and so universal as death, should ever have been designed by Providence as an evil to mankind. --Jonathan Swift
DEMENTIA Affects ~10% over 65, almost half over 85 Median survival ~5yrs after diagnosis All dementias are similar at endstage Global, severe cognitive deficits Dependence in all ADLs Frailty, cachexia Dysphagia Recurrent pneumonia, other complications
DEMENTIA AND HOSPICE An underserved but growing population <1% of enrollees in 1995 17% of enrollees in 2009 2/3 die in SNFs, few with hospice services Ample evidence of unrelieved suffering in endstage dementia Families especially grateful for hospice services, rate quality of care higher, unmet family needs lower
BARRIERS TO HOSPICE CARE #1 barrier: Difficulties with prognostication, therefore with reimbursement Unfamiliarity with behavioral problems Failure to view dementia as a terminal condition How could you die from a bad memory? Generally underreported on death certificates Leads to inappropriately aggressive treatments
DEMENTIA AS A TERMINAL CONDITION Stereotypic course with progressive functional decline, cachexia, complications Best conceived of as brain failure, i.e., leading to functional decline and a cascade of multiple organ failure
BEHAVIORAL PROBLEMS Common throughout the course of dementia, generally increase with severity Change qualitatively with progression For example, psychosis in moderate dementia, resistiveness in severe dementia May decrease near the end of life, with increasing apathy, passivity, lethargy Patients are non-verbal, will never be able to give history Family, staff will often know, but may project
SIGNS OF DISTRESS Any behavioral problem Screaming Restlessness Combativeness Distressed facial expression Crying Others
DELIRIUM Attentional deficits (hard to assess in endstage dementia) Altered LOC (may be hard to assess in endstage dementia) Abrupt change
DIFFERENTIAL DX OF DISTRESS Delirium (iatrogenic, opioid neurotoxicity, infection, dehydration, organ failure, covert injury, etc., etc.) Pain/discomfort (includes trivial sources) Fearfulness Constipation Sensory or social deprivation Restraint Depression (?)
ACUTE BEHAVIOR CHANGE I atrogenic I nfection I llness I njury I mpaction I nconsistency I s the patient depressed?
RESISTIVENESS Common in severe dementia May relate to fearfulness and/or abulia Limit interventions, goals of care Best time, person, approach, etc. Distract during care Approach from the side Slow, gentle approach; try to explain As soon as I do this, I ll leave you alone
MANAGEMENT Try to figure out what s going on, fix what you can (if consistent with goals of care) First, consider treatment for presumptive pain Consider treatment for presumptive depression (?) Consider multisensory stimulation, reminiscence Neuroleptics are probably treatment of choice for fearfulness Use enough so pt. is at peace, not enough to sedate Choice often depends on available routes of administration
SLEEP DISTURBANCE Normal circadian cycle is rare in endstage dementia Can the environment tolerate the disturbed sleep cycle? Consider diurnal bright light, exercise, mental stimulation, treatment of pain and nocturia, keeping room cool and quiet, providing nightlight Consider hypnotics
ANOREXIA Strong predictor of decreased QOL Anorexia is inevitable, multifactorial Anosmia Visual agnosia Impersistent swallow, pocketing Dysphagia Fear of being fed Restlessness, distractibility Concurrent illnesses, meds Restrictive diets Inadequate time to feed patients Neuropeptide, interleukin changes
ANOREXIA AND CACHEXIA Cachexia is also probably inevitable, as in most terminal illnesses Causes, but is probably not caused by, anorexia Numerous reports of increased TNF-α, IL-6, CRP levels in severe dementia Patients are unable to benefit from nutrients; this is why tube feeding doesn t improve health or QOL Cachectic patients are unlikely to feel hunger Families are rarely educated about the limitations of artificial nutrition
TUBE FEEDING IN DEMENTIA Usually placed during a crisis hospitalization; discussion almost always limited to complications of the procedure itself Median survival after PEG placement is 56 days Possibly the most common cause of restraint in dementia Up to 47% of ER visits in advanced dementia are due to feeding tube problems
TUBE FEEDING IN DEMENTIA Does not substitute for natural feeding Does not prevent starvation Does not prevent aspiration, pneumonia (probably increases risk) Does not improve strength or function Does not promote wound healing (possibly increases risk, due to increased urine and stool output, increased need to immobilize pt) Does not prolong life (probably shortens) Does not improve quality of life (almost certainly worsens) Does improve reimbursement, staff workload
FEEDING THE PATIENT WITH ENDSTAGE DEMENTIA Comforting to family, often to patient Limit goals Fix what you can Restrictive diets are virtually never warranted Dysphagia precautions, modified diet (depending on goals of care) Preferred foods (often monotonous, soft texture) Consider sweetening foods Consider flavor enhancers (salt, MSG) Pleasant, non-distracting environment Feed 24/7 Nutrient-dense supplements Spouted cup Have family help Limited role for appetite stimulants (dronabinol, megestrol) May improve QOL and intake, rarely weight, never function or survival
BEREAVEMENT Starts well before the patient s death Much more loss of patient s identity than in other terminal illnesses Many small deaths along the way Much of the grieving is done along the way, death may be anticlimactic and family may feel guilty about this Role changes are inevitable May be family conflict over care decisions (Advance Directive usually inadequate)
HELPING THE FAMILY Start early Prognosticate, anticipate likely problems Work on Advance Directive, update frequently Educate about management strategies LISTEN! Watch for signs of complicated grief Prolonged guilt or anger Negative reminiscing Nightmares Depressive sx s, self-destructive or suicidal behavior
PREDICTORS OF COMPLICATED GRIEF Poor premorbid relationship with the pt. Psychiatric illness or substance abuse Widowers UNRELIEVED SUFFERING
Thank you!