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Track I: The Who, What, Where, When, Why, and How of Palliative Care Danielle J. Doberman, MD, MPH Director, Palliative Medicine Program George Washington University Hospital Assistant Professor of Medicine, GWUSOM ©Danielle J. Doberman, MD, MPH
Disclosures No Relevant Financial Relationships with Commercial Interests No Conflicts of Interest Danielle J. Doberman, MD, MPH ©Danielle J. Doberman, MD, MPH
Learning Objectives 1. What are the benefits of palliative care for individuals living with dementia and for the people who care for them? 2. When should or is best time for palliative care to be initiated for a loved one who has dementia? 3. What does it mean to "initiate" palliative care? What type of care is commonly provided? ©Danielle J. Doberman, MD, MPH
Case: Millie Millie is an 84 y/o F for new patient evaluation. PMH: Moderate dementia, CVA and COPD Hip fx 3 mo ago 2 UTIs in last year 2 Aspiration PNA ©Danielle J. Doberman, MD, MPH
Case: Millie Weight down 15 lbs in 3 months; now 82 lbs. Eats 50%, 25%, 25% of a pureed diet with thickened liquids “Word salad” speech Chair-bound; scoots Total care Full Code ©Danielle J. Doberman, MD, MPH
Case: Millie “Slowing down” Pleasantly confused Meal times are “difficult” ? Pocketing ? “Doesn’t like pills” 1) Alendronate (Fosamax) 2) Mirtazapine (Remeron) 3) Atorvastatin (Lipitor) 10 mg 4) Aspirin 5) Calcium + D, MVI, FeSO4 6) Ranitidine 7) Advair diskus twice daily 8) Combivent MDI if needed ©Danielle J. Doberman, MD, MPH
Case: Millie Daughter wants to know if she needs a mammogram or colonoscopy? As you discuss a plan of care with family, do you: Address advance directives? Provide anticipatory guidance? Discuss prognosis? Mention options of palliative care or hospice? ©Danielle J. Doberman, MD, MPH
What is Palliative Care? A philosophy of care & multi-disciplinary system for delivering care. Can be combined with life-prolonging treatment or can be the sole focus of care (Hospice). Physical, psychological, spiritual, and practical burdens of illness addressed. Goals: Assist with decision-making/advance care planning Control pain and other suffering Enhance quality of life for patient & family National Consensus Project for Quality Palliative Care ©Danielle J. Doberman, MD, MPH
H ospice vs. Palliative Care Hospice Prognosis of < 6 mo Focus on comfort care Medicare hospice benefit Volunteers integral & required aspect of the program Palliative Care Any time during illness May be combined with curative care Independent of insurer Complementary therapies often included “Hospice is for the predictably dying” ©Danielle J. Doberman, MD, MPH
When? Trajectory View of Illness DiagnosisDeath Curative Treatments Bereavement Care Hospice Appropriate Palliative Medicine (relieve suffering, improve quality of life) 6m * ©Danielle J. Doberman, MD, MPH
What stage? Is palliative care in dementia different? Does decision making differ by stage? What does the long view hold? MILD MODERATE SEVERE ©Danielle J. Doberman, MD, MPH
Communication is Key! Communication with patients is the core skill of palliative medicine In a typical visit, physicians elicit less than half a patients’ concerns, and consistently fail to discuss their values, goals of care, and treatment preferences Tulsky JA. Geriatric Palliative Care ©Danielle J. Doberman, MD, MPH
What are “Goals of Care?” Goals of Care = Patient Values Cure disease Avoid early death Maintain or improve function Prolong life Avoid pain Avoid disability Avoid dependence Maintain alertness Improve life quality Stay in control Support family *Goals may change as an illness evolves ©Danielle J. Doberman, MD, MPH
Values & Goals Assessment “What are your most important hopes? What are your biggest fears about your health?” “What makes life worth living? What if you could no longer do these things?” “Would there be any circumstances under which you would find life not worth living?” “Has anyone close to you ever died? What are your feelings about that experience?” Quill JAMA 2000 ©Danielle J. Doberman, MD, MPH
“Moms living will” ©Danielle J. Doberman, MD, MPH
How stressed is daily life? “How much effort did it take to get in to the office today?” ©Danielle J. Doberman, MD, MPH
Case: What are Millie’s Goals? More time? More quality? What is “acceptable” vs. “unacceptable” QOL? Do Mammogram and Colonoscopy fit into the goals? “Hospice?” ©Danielle J. Doberman, MD, MPH
How: Palliative Care = Shared Decision Making Paternalism Shared Decision Making Autonomy ©Danielle J. Doberman, MD, MPH
American Bar Association’s Commission on Law & Aging, Consumer’s Tool Kit for Health Care Advance Planning: Resources ©Danielle J. Doberman, MD, MPH
Are Some Conditions Worse Than Death? What is QOL? What is suffering? aging/toolkit/ ©Danielle J. Doberman, MD, MPH
What treatment would you want if: You could no longer talk or think clearly? You could no longer recognize or interact with your family? You couldn’t swallow safely and a feeding tube was suggested? You couldn’t breathe and needed a breathing machine indefinitely to keep you alive? You could no longer control your bowel or bladder? You lived in a nursing home? You had pain most of the time? ©Danielle J. Doberman, MD, MPH
Palliative Care for the Older Adult Needs differ from younger pts * Capacity evaluation Withhold/withdraw life-sustaining treatments Greater time Jettison guidelines? Respect debility & multi-morbidity * Evers, Meier, Morrison. JPSM. 23(5) ©Danielle J. Doberman, MD, MPH
Palliative Care for the Older Adult Anticipatory Guidance & Advance Care Planning are Key! Educate on usual disease course Describe possible disease complications Ex: Dementia: Normalize weight loss Discuss artificial feeding/hydration early Assess social/financial needs of patient/family Empower family to be advocates in a complex medical system Define quality of life ©Danielle J. Doberman, MD, MPH
Is Dementia a Terminal Illness? CASCADE Study: Prospective study of 323 pts with advanced dementia followed for 18+ months; 177 died during study “CASCADE” = Choices, Attitudes, and Strategies for Care for Advanced Dementia at End-of-Life Pneumonia, fever and eating problems were the events most associated with 6 month mortality Pain, pressure ulcers, dyspnea and aspiration also common and increased in frequency at EOL Mitchel NEJM 10/15/2009 ©Danielle J. Doberman, MD, MPH
PNA Febrile Eating Prob Survival following first PNA, Febrile Illness and Start of Eating Problems ©Danielle J. Doberman, MD, MPH
Dementia Prognostication: Acute Illness Survival 6 mo mortality following hospitalization: end-stage dementia vs. cognitive intact Pneumonia: 53% versus 13% New hip fx: 55% versus 12% ☼ Majority of dementia pts from NHs 70% of dementia+PNA lacked Adv Dir 90% lacked documented goals of care in hospital Suggests that DNHosp is key area of intervention Morrison and Siu JAMA. 2000; 284: ©Danielle J. Doberman, MD, MPH
Tube Feeds: The Evidence No evidence for: Decreasing aspiration risk Improving nutritional status Decreasing risk of pressure sores Prolonging survival 60% mortality at 6 months Improving quality of life Lower rates of PEG placement with prior advance care planning ©Danielle J. Doberman, MD, MPH
Dementia Statistics 5.2 million Americans have Alzheimer’s disease. 1 in 3 seniors dies with Alzheimer's or another dementia. 6 th leading cause of death in the US Est.1.8 million in US with “end-stage” dementia Unable to recognize family Dependent in ADLs Unable to communicate meaningfully Experience infections due to frailty Morrison & Siu. JAMA. 2000; 284:47-52 Alzheimer’s Association, 2014 ©Danielle J. Doberman, MD, MPH
Eligibility 2 Physician prognosis of 6 months or less to live, “if disease runs its usual course.” Philosophical desire to focus on comfort, dignity and quality of life “Forgo further curative treatment” 100% covered by Medicare, Medicaid, VA, most insurances DNR/DNI not required!! ©Danielle J. Doberman, MD, MPH
Benefits of Hospice: General Earlier hospice enrollment reduces the risk of depression in family caregivers. Bradley et al. Am J Psych 2004;161: Survival is on avg 29 days longer for enrolled pts compared with matched peers. Connor et al. JPSM. 2007;33(3): ©Danielle J. Doberman, MD, MPH
Common Ethical Concerns in Palliative Care of patient with Dementia 1) Healthcare decision making Patient Capacity? Full or partial? Proxy DPOA? Guardian? State Surrogacy Laws Living Will/Advanced Directives? ? Artificial hydration and nutrition documented What if SNF placement dictates a PEG? ©Danielle J. Doberman, MD, MPH
Common Ethical Concerns 2) Treatment Decisions Withdrawal/Withhold ≠ Euthanasia “Withholding” of treatment: conscious selection/application of technology being mindful of QOL (palliative care!) CPR? Ventilator? Antibiotics? Artificial nutrition? Hospitalization? Compassionate withdrawal of technology that is not achieving its goal or worsening QOL ©Danielle J. Doberman, MD, MPH
Common Ethical Concerns 3) Financial Medicare reimbursement supports skilled care Physicians are reimbursed more “to do” (ex: place PEG) than “not do” (have conversation on pros/cons) ? Financial disincentives to hospice in acute hospitals “We can’t place your mom without a PEG” “Her assisted living can’t take her if she doesn’t walk to dinner” Difficult to obtain LTC beds direct from community or acute hospital ? Are families “pushed” to make decisions or “motivated” to make decisions based on finances alone? Ex: skilled comfort care, vs. hospice Ex: skilled with PEG, vs. following living will no PEG ©Danielle J. Doberman, MD, MPH
Summary Dementia is a terminal illness. Pneumonia, febrile illness and feeding difficulties are markers of the last 6 months of dementia. As the disease progresses, a gradual shift from focusing on function and cure to palliation and comfort is what families want. Palliative medicine is guided by patients’ goals For those with advanced dementia, Hospice improves patient and family comfort. ©Danielle J. Doberman, MD, MPH
Thank you for listening! Questions? Danielle J. Doberman, MD, MPH ©Danielle J. Doberman, MD, MPH
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