MemoryCare Professional Caregiver Dementia Education Program

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1 Dementia: End of Life Issues Objectives MemoryCare Professional Caregiver Dementia Education Program Module VI Dementia: End of Life Issues Presenter: Margaret A. Noel, MD Learn to recognize the end stage of dementia Recognize the value of assisting a family to identify goals of care Identify changes in swallowing capability and related feeding issues Anticipate common medical concerns in the final years and dying process Understand anticipatory grief and support needs for family members 1 We gratefully acknowledge the Fullerton Foundation for supporting the development of this material MemoryCare. All rights reserved Brain Hemispheres Long Term Care Planning Advantages to staying in the home Familiar surroundings Family member will not move Cost effective Supportive services in the home to meet client care need Family members won t have negative feelings attached with facility placement Advantages to moving to a residential facility 24 hour supervision Recreational and socialization Nursing services readily available Additional caregivers to oversee care Reduced stress and time constraints on family Cost effective if 24/7 care is needed 5 Image courtesy of the National Institute on Aging/National Institutes of Health 6 Emily Prieto - Home Health Provider: A Guide to Essential Skills; Reproduced with the permission of Springer Publishing Company, LLC, New York, NY Memorycare, All rights reserved. 1

2 Functional Independence When Is Placement Necessary? Safety of person with dementia or their caregiver is at risk Caregiver health compromised Physical needs of person with dementia exceed what caregiver can provide Financial hardship 7 8 How do people with dementia die? Sudden Accident, fall, MI, CVA, infections Gradual Other chronic illnesses are harder to treat and contribute to decline Complications of immobility, swallowing difficulty, and immune compromise Pneumonia is sited as the most frequent cause of death in dementia patients The Course of Late Life Rare Common 9 10 Time Six Month Mortality in End-Stage Dementia Following Acute Illness 60% 50% 40% 30% 20% 10% 0% Pneumonia Hip Fracture End-stage Dementia Cognitively Intact Functional Assessment Staging FAST LEVEL: 6(A) Requires assistance with dressing 6(B) Requires assistance with bathing 6(C) Requires assistance with toileting 6(D) Urinary incontinence 6(E) Fecal incontinence 7(A) Ability to speak limited to approximately 6 intelligible different words in the course of an average day 7(B) Speech limited to use of single intelligible word 7(C) Ambulatory ability is lost 7(D) Cannot sit up without assistance and supports 7(E) Loss of ability to smile 7(F) Loss of ability to hold up head independently 11 Morrison & Siu, JAMA 2000; Reisberg, B. Functional Assessment Staging (FAST). Psychopharmacology Bulletin. 1988:24: Mitchell SL, et al. The Clinical Course of Advanced Dementia. NEJM 2009;361: C Memorycare, All rights reserved. 2

3 NHPCO Medical Guidelines for Determining Prognosis in Dementia Stage Seven C of the FAST Presence of co-morbid medical conditions of sufficient severity to warrant medical treatment, documented within the past year: Aspiration pneumonia Upper urinary tract infection Septicemia Decubitus ulcers Difficulty swallowing food or refusal to eat, sufficiently severe that patient cannot maintain sufficient fluid and calorie intake to sustain life Barriers to Using Hospice Care in Advanced Dementia Physician reluctance Uncertainty of 6 month prognosis Under-recognition of dementia as terminal Lack of understanding that the hospice team approach enhances quality of life and care. Family reluctance Nursing home reluctance What does hospice add to our care? Reduced revenues compared with Medicare A reimbursement for skilled therapies Clinical Course of Advanced Dementia 18 month, prospective study of 323 Boston NHPs with advanced dementia (72% AD); median time from diagnosis 6 years; average age 85 Probability of death within 6 months, 24.7%; increased to 46.7% if episode of pneumonia occurred and 38.6% if eating problem occurred Median overall survival approximately 16 months Proxies/surrogates who understood poor prognosis were much less likely to agree to burdensome interventions in the last 3 months of life Mitchell SL et al.nejm 2009;361: Clarifying Goals of Care Benefit of early stage diagnosis - patient can participate in the preparation of advance directives before dementia changes capacity Important to understand values and preferences; eventually all must rely on a surrogate/proxy for making health care decisions Decisions regarding CPR, hospitalization, tube feeding, antibiotics and other medications often vary with stage of dementia Encourage caregivers to evaluate any option by reflecting on the goals for this person s care and weighing the benefits, risks, and impact on patient s quality of life Rip and Ann Memorycare, All rights reserved. 3

4 Recap: Rip s Course First symptoms of AD in 1993 at age 66 Diagnosed and started on Aricept in 1996 First seen at MemoryCare in 2002 due to behavioral problems Admitted to Assisted Living in 2002 at FAST stage 6 Started on memantine (Namenda) in 2004 Weaned from his anti-psychotic medication, dependent in all ADLs except walking and began to need intensive feeding assistance in 2005 Ambulatory ability declined and by 2008 he was 2 person assist for ambulation; he had multiple falls without serious injury In 2009, he began to experience infections Hospitalization Hospitals are not designed for someone with dementia Family members who may be able to provide key information about the person s medical history, care needs and goals of care are not always consulted by or allowed access to providers Care plans are often made without the involvement of a caregiver making it difficult to implement after discharge Those with dementia have higher rates of delirium, restraint use, medical complications, and mortality regardless of the reason for their admission Research shows people with dementia receive less pain medications than those without dementia (e.g. for hip fracture) Artificial Nutrition/Tube Feeding Percutaneous endoscopic gastrostomy (PEG) procedure developed in 1981 and gradually became the standard of care for people who aspirated Over time studies have not supported benefit in advanced dementia Unfortunately, patient s wishes are rarely known regarding tube feeding Decision about tube feeding one of the hardest for families to make Approximately 8% of people with advanced dementia have feeding tubes; use varies widely with type of facility and geographic area Tube Feeding in Patients with Advanced Dementia Does tube feeding prevent aspiration pneumonia? Is survival improved by tube feeding? Are pressure ulcers prevented or improved by tube feeding? Can tube feeding improve functional status? Does tube feeding improve patient comfort? Finucane et al, JAMA, 1999 Does Tube Feeding Prevent Aspiration Pneumonia? No randomized controlled trials (RCTs) Case control studies Tube feeding is itself a risk factor for aspiration pneumonia in elderly Orally fed patients with dysphagia had significantly fewer major aspiration events than those fed by tube in one trial Equal pneumonia rates for jejunostomy and PEG Does Tube Feeding Improve Survival in Dementia Patients? No RCTs. Observational studies support no survival advantage. Sampson, Coch Database Sys Rev. 2009:CD Mortality is high for all tube fed patients; 24% dead in one month, 63% dead in one year, 81% dead in 3 years in largest review of Medicare beneficiaries (n=81,105). Grant, JAMA 1998;279: Another study of 1386 NH patients with progressive dementia showed no survival benefit of TF over hand fed patients. Mitchell, Arch IM, 1997;157: Finucane et al, JAMA, Memorycare, All rights reserved. 4

5 Does Tube Feeding Prevent or Improve Pressure Ulcers in Dementia Patients? Two longitudinal studies showed no improved healing of existing pressure ulcers and no protection from new pressure ulcers Bedfast patients with advanced dementia and feeding tubes are more likely to be restrained, thus at increased risk of developing pressure ulcers Does Tube Feeding Improve Functional Status for Dementia Patients? Retrospective study found no nursing home patients experienced improvement in functional status during 18 months after PEG placement No published studies suggested tube feeding can improve or mitigate functional decline in demented patients with swallowing difficulties 25 Finucane et al, JAMA, Cochrane Database Syst Rev Apr 15;(2):CD Finucane et al, JAMA, 1999 Does Tube Feeding Improve Patient Comfort? Restraints: 48-71% of patients with dementia and feeding tubes, regardless of type of tube Restraints==>distress==>agitation==>sedation Tube fed patients deprived from taste, touch and social interaction feeding tubes are generally ineffective in prolonging life, preventing aspiration, and even providing adequate nourishment in patients with advanced dementia and they can have adverse consequences - principally the need for restraints. Although the use of feeding tubes is not unequivocally futile in all cases, balancing the risks and benefits leads to the conclusion that they are seldom warranted for patients in the final stage of dementia. Muriel R. Gillick, MD, NEJM, Ciocon, et al. Arch Int Med Gillick, NEJM, Hand Feeding Benefits Comfort Feeding Always Careful hand-feeding together with careful positioning using food/liquids prepared in such a manner that will lessen aspiration risk Human, interactive care is direct and not merely symbolic Patient controls the rate, amount, and cadence of feeding For the actively dying patient, food and fluids are not given unless requested by the patient 29 Palacek EJ et al.jags 2010;58:580-4 Noel MA. JAGS 2010;58: Memorycare, All rights reserved. 5

6 End-stage symptoms that require palliation Pain Nausea, vomiting Constipation Dyspnea Dry mouth Non-healing wounds Fever Anxiety Family fear and frustration Pain Assessment in Dementia PAIN AD (Alzheimer s Disease) scale ranges from 0 10 Breathing Vocalization Facial expressions Body language Consolability Valid, reliable, easy to use Warden, Hurley, Volicer, JAMDA 2003;4:9-15 Treating Pain in Dementia Dyspnea/Shortness of Breath Mild moderate pain Acetaminophen 650 mg po QID NSAIDS Neuropathic pain antidepressants and anticonvulsants Severe pain Begin with low dose opioids Use routine dosing not PRN; stay ahead of constipation and nausea Commonly observed in the dying process Often a subjective sensation of uncomfortable breathing even with normal oxygen saturation Strongly associated with anxiety Each may cause or exacerbate the other Very frightening to patient and caregivers Find what works: Positioning, fan aimed at cheek, open window, relaxation techniques Trial of oxygen if hypoxic Opioids are the treatment of choice if medication needed Palliative care goals for chronic wounds Focus on quality-of-life issues Stabilize the wound Reduce pain, eg, from dressing changes Reduce bacterial burden Reduce exudates Eliminate odor Fever near the end of life Discuss possible infections ahead of time as part of advance care planning Onset may trigger a time of decision Consider benefits and burdens of workup and treatment in light of: Current stage of illness; prognosis Patient/proxy s preferences and goals of care Fever itself usually responds to acetaminophen Memorycare, All rights reserved. 6

7 Agitation & Anxiety Assessment Keep an open mind during assessment Ask, What s going on here? Try to make sense of the behavior rather than leaping to control measures (sedatives, restraints) Talk (listen) to patient and family May have physical and psychological causes e.g., urinary retention, anxiety, AND delirium Often a sign of pain in cognitively impaired Environment may be a cause Physical examination and evaluation of the environment will yield best clues Agitation & Anxiety Management Likely to require multifactorial interventions Environmental modification(s) Psychological support Medications Neuroleptics (for delirium) Antidepressants Benzodiazepines (for anxiety) Morphine (for dyspnea, pain) Physiologic Changes During the Dying Process Increasing weakness, fatigue Decreasing appetite / fluid intake Mottling of skin Neurologic dysfunction: decreasing level of consciousness, terminal delirium/seizures, loss of ability to swallow and maintain sphincter control, changes in respiration (apnea and Cheyne-Stokes respirations) As Expected Death Approaches Reinforce signs, events of dying process Respect personal, cultural, and religious rituals Family support throughout the process Grief For many, described as Gre-lief Caregivers often exhausted and numb Relief may be complicated by guilt Simple presence and understanding can help a family navigate the loss of their loved one with profound gratitude In Memoriam: William Rip Dobbins October 4, 1927 to November 7, 2010 Memorycare, All rights reserved. 7

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