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Long-Term Care and Hospice “Like Peanut Butter and Jelly ”

Long-Term Care and Hospice “Like Peanut Butter and Jelly ”. James A. Avery, MD, FCCP, FACP, FAAHPM Chief Medical Officer, Golden Living Assistant Clinical Professor Of Geriatrics, Mount Sinai School of Medicine. Full Disclosure.

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Long-Term Care and Hospice “Like Peanut Butter and Jelly ”

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  1. Long-Term Care and Hospice “Like Peanut Butter and Jelly” James A. Avery, MD, FCCP, FACP, FAAHPM Chief Medical Officer, Golden Living Assistant Clinical Professor Of Geriatrics, Mount Sinai School of Medicine

  2. Full Disclosure Golden Living owns AseraCare Hospice, which serves just over a third of our LivingCenter facilities

  3. “Like Peanut Butter and Jelly” • Nursing Homes: a site for terminal care • What do patients and their caregivers want and need • Hospice: much much more than pain management • Hospice eligibility • Alzheimer’s

  4. Terminal Care in Nursing Homes • Location of deaths, 2003 • Hospital 54% • Home 21% • Nursing Home 23% • For those over 75 yrs of age, 35% of all deaths occur in a nursing home • Conclusion: the NH is increasingly being used as a site for terminal care and a hospice partnership makes good sense.

  5. Dying in Long Term Care • 40% of deaths in the US by 2020 will be in nursing homes (LTC) • 20-50% of LTC admissions die within one year. (Median survival of 2.75 years) • Most deaths were due to progressive chronic illness (dementia, CHF, COPD, CVA, Parkinson’s) Oliver D. J Am Med Dir Assoc 2004;5:147-55 Sachs G. J Gen Intern Med 2004;19:1057-63

  6. What Do Dying Patients Want? • Quality of life • To die at home (or in NH) • Control of pain and symptoms • Avoidance of inappropriate prolongation of the dying process • A sense of control • Relief of burdens on family • Strengthening of relationships with loved ones • Singer et al, JAMA, 1999

  7. Hospice Prevents Hospital Admissions • Rehospitalization rates (30 days before death) (9,202 nursing home residents) • No hospice 42% • Some hospice days 24% • Entire time on hospice 1% • The American Journal of Medicine; July 2001; 111(1):38-44

  8. Reasons For Nursing Home Overhospitalizations • According to a survey of Directors of Nursing and Medical Directors at 448 nursing homes in 25 states • Lack of end-of-life education for residents and caregivers and staff • Lack of end-of-life support for residents and caregivers and staff Journal of the American Geriatrics Society; March 2006 54(3): 458-465.

  9. Hospice in the NH HelpsAll Patients in the NH • Rehospitalization rates (226,469 patients) • NHs with no hospice patients 47% • NHs with 0.1 – 5% hospice patients 41% • NHs with > 5 % hospice patients 39% • Authors concluded that the greater the hospice presence in a NH, the lower the hospital use for all patients. • American Journal of Medicine July 2001;111;38-44

  10. “When Too Much is Too Little” NEJM 1996: 73 year old man with terminal cancer whose family desired comfort care • 47 days in an acute care hospital • Tied to his bed for 29 of his 47 days • 50 blood draws • Was NPO at least one day of every week • Died tied to his bed - delirious and in pain

  11. Prevalence of Pain in NH • Elderly NH residents with cancer • 26% in daily pain received no analgesics • Those least likely to receive analgesics • 85 years and older • Minority race • Low cognitive performance (Those in Alzheimer Units) Bernabel et al, JAMA, 1998

  12. A study of 2,031 Colorado nursing home residents Using the Nursing Home Pain Medication Appropriateness Scale (PMAS), the researchers found a mean total PMAS score of 64% and concluded that, “pain prescribing practices in nursing homes are generally poor.” “Assessing the appropriateness of pain medication prescribing practices in nursing homes,” Journal of the American Geriatrics Society; February 2006; 54(6):231-239.

  13. Hospice Means Better Pain Control in the NH • Hospice Care Linked to Superior Pain Management in Dying Nursing Home Patients (10,573 patients) • Journal of American Geriatrics Society, March 2002

  14. Hospice is More Than Pain ManagementBenefits of hospice in a nursing home setting (69 pts): • Pain assessment and management 76% • Patient and family support/education 67% • Psychosocial support 38% • Compassionate care 38% • Improved communication with family or physician 11% • Companionship 10% • Medications, DME, or volunteers 10%

  15. Consider Hospice Whether a PEG Tube Goes In or Stays Out

  16. Hospice Helps With Decision-Making One example: Artificial Nutrition and Hydration “All patients who forgo ANH should be offered a comprehensive . . . hospice plan (which) should address physical and psychological symptoms and should include emotional and spiritual support as well as bereavement support for the family after the patient’s death.” New England J of Med 2005;353(24): 2607-2612

  17. Hospice Care Linked to Longer Patient Survival “Our findings are important in helping to dispel the myth that hospice care hastens a patient’s death . . . This study provides important information to suggest that hospice is related to a longer – not shorter – length of survival . . . “ Stephen Connor et al, J of Pain and Symptom Management; March 2007; 33(3):238 – 246.

  18. Hospice Helps the Caregivers “… hospice was associated with a significant reduction in the risk of death of the hospice patient’s bereaved spouse, even when hospice was used for only 3 to 4 weeks.” JAMA 2004;291(4):483-491

  19. Hospice is Much More Than Pain Management • Help with challenging families • Preparing families and patients and NH staff for the dying process • Having patients not die alone – we are a presence during the dying process • Reducing physician phone calls • Staff education and support • Hospice may improve quality scores on the 5-Star rating system because of exclusions regarding ADL and ambulation decline

  20. Hospice is Much More Than Pain Management • Responding to the needs of the patient • Thirteen months of bereavement for caregivers and family • Hospice is about spiritual care • Hospice is about hope • Reducing pain intensifiers • Loneliness, anger, guilt , fear, anxiety

  21. Research About Pain Intensifiers Using fMRI and other advanced neurological imaging techniques, researcher have found that the pre-frontal, anterior cingulate, and amygdala portions of the brain are involved in the “up” and “down” regulation of negative emotions (i.e. suffering) Ochsner, K.N., et al. (2004). For better or for worse: Neural systems supporting the cognitive down- and up-regulation of negative emotion. Neuroimage, 23, 483-499.

  22. Pain Intensifiers • When a new pain is encountered, pain fibers travel from the toe to the spinal cord and to the brain. • Researchers have found that there is an increase overall in brain activity during pain • But over 90% of that increase is the brain talking with the brain (intra-brain activity)

  23. Up-Regulators of Suffering • Fear • Anger • Guilt • Loneliness • Helplessness • Anxiety • Depression • Lack of faith • Loss of perceived roles • Loss of control

  24. Down-Regulators of Suffering • Loving family  • Caring friends • Community • Love • Familiar/safe environment • Joy • Laughter • Hope • A meaningful faith • Maintaining control • Hospice

  25. These up and down regulators become crucial during a patient’s final days and hours, what we, in hospice, call the Terminal Phase.

  26. The “Final Days and Hours”Are Different . . . and Special • The terminal phase is not simply a continuation of all that has gone before. • New causes of suffering often appear – both for the patient and the family. • Suffering at the end is always remembered by caregivers and family. • One of the preeminent goals of hospice and nursing home care has always been a comfortable and dignified terminal phase.

  27. Hospice fills in the “GAPS” • Goals of Care (nutrition and hydration, rehospitalization, ventilators, treatment of infections, safety issues) • Advanced Care Planning • Pain and Symptom Management (the pain and symptom management of patients who can’t verbalize often leads to poor treatment) • Spiritual and Social Care

  28. Dying in the Nursing Home:The results of a caregiver survey • 83% believed the resident was “ready” for his or her death • 58% believed resident experienced a “good death” • Areas of concern (in order of importance): emotional & spiritual care, pain management, and goals of care Henderson, Hanson, et al. University of North Carolina, Chapel Hill Presented at AAHPM in 2003

  29. Total Pain = SufferingCecily Saunders, RN, MSW, MD • Physical Pain • Social Pain • Financial stress, family tension, difficult living situation, loss of important roles • Psychological Pain • Depression, anxiety, deep wounds from the past, wounds inflicted by the patient on others, inability to trust others • Spiritual Pain • Burden of sins, terror of the after-life, guilt, loss of hope

  30. Letters to OlgaVaclav Havel “Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.”

  31. Hospice Increases Hope • The Three Stages of Hope • The hope for cure • The hope for prolongation of life • The hopes of the dying • Thus, hope can be changed, realigned, refocused and redefined.

  32. The Hopes of the Dying • Hope that a person can give and accept love • Hope that a person can find forgiveness • Hope that death won’t be alone • Hope that death won’t be painful • Hope that a person can be reconciled with their past

  33. The Hopes of the Dying • Treated with dignity • Hope that financial and worldly affairs can be put into order • Hope of transmitting knowledge and truth to loved ones • Hope of enjoying some future event • Spiritual hopes

  34. Is This Dignity?

  35. The Spiritual Hopes of the Dying • That all things work together for good • That one has accomplished God’s plan on this earth • That one’s life had meaning and purpose • That one is “saved” • The hope of the afterlife and heaven

  36. Hospice as the Answer to PAS and Euthanasia In the Netherlands, only 5 % of euthanized patients noted physical pain as the single most important reason for requesting euthanasia. Hopelessness was the number one reason. JAMA 11977;27:1720

  37. Let’s take an example: Alzheimer’s Disease • Four million people have Alzheimer’s • One in ten persons over 65 years of age and nearly half of those over 85 have Alzheimer’s Disease • An estimated 14 million will have Alzheimer’s by 2050 unless a cure or prevention is found

  38. Is Advanced Alzheimer’s Disease a Terminal Illness? • The Perception: When asked, physicians guessed that only 1.1% of their nursing home residents with advanced dementia had a life expectancy of less than six months. • The Reality: 71% of those patients died within six months (Archives of Internal Med 2004;163;321-326)

  39. Alzheimer’s Patients In 2001, 7% of Alzheimer’s patients in nursing homes were enrolled in hospice Hirschman KB, LTC:Clin Care Aging 2005; 13 (10): 25-29

  40. Alzheimer Patients Are Eligible for Hospice If: I. They have a FAST scale of 7 (all of the 6’s and one 7 are met) AND IIA. Have a significant complication of Alzheimer’s within the last 12 months or IIB. Have a significant co-morbidity

  41. Stage 6A: Difficulty putting clothes on properly Stage 6B: Unable to bathe properly; may develop fear of bathing Stage 6C: Inability to handle mechanics of toileting Stage 6D: Urinary incontinence Stage 6E: Fecal incontinence Stage 7A: Ability to speak limited to less than 6 words Stage 7B: All intelligible vocabulary lost Stage 7C: Non-ambulatory without assistance Stage 7D: Unable to sit up independently Stage 7E: Unable to smile Stage 7F: Unable to hold head up FAST Scale

  42. A Significant Complication of Alzheimer’s Disease:(within the last 12 months) • Aspiration pneumonia • Pyelonephritis • Septicemia • Decubitus ulcers: stage 3-4 or multiple • Fever, recurrent after antibiotics • Inability to maintain sufficient fluid and caloric intake with 10% weight loss during 6 months or serum albumin less than 2.5 gm/dl.

  43. Dementia: Documentation Tips • FAST scale reading? • Complications of Alzheimer’s? • Weight loss? Difficulty swallowing? Evidence of aspiration? Decubiti? • Co-morbidities? • COPD? CHF? Stroke? • Other supporting evidence? • Bed bound? Contractures? Aspiration risk?

  44. Physician Issues • Long-term Care Physician – manages the case in collaboration with the hospice team • Hospice Medical Director – assists the nursing home team as needed or requested. • Reimbursement: Every physician visit (attending or consultative) is paid at 100% of the Medicare rate (but must use special modifiers)

  45. David Casarett, MDJAMA Vol. 294, No.2:211-217 • Nursing home residents are more likely to enroll in hospice if their physician and health care team were involved in the decision to refer them. • When patients do enroll in hospice, patients and families tend to be more satisfied with the care they get.

  46. Dr. Casarett stated that a common theme from his study was that “patients and families often wait for physicians to begin the hospice discussion – and they wait and they wait.”

  47. JAMA, 2005:294:211-217 • 205 Residents in three nursing homes • A randomized controlled study • A simple intervention: A hospice informational visit with results communicated by fax to the attending physician if the resident met three criteria for hospice (expressed comfort goals, refused CPR and mechanical ventilation, and identified a palliative care need)

  48. Results and Implications • The intervention resulted in 20% of residents being admitted to hospice vs. 1% for controls • Families ratings of the care at the end-of-life was higher for those patients on hospice • The earlier the referral to hospice, the greater the benefit to the patient • Patients on hospice were admitted to the hospital less frequently and spent less days in the hospital • Patient and family goals were met more often for those in hospice

  49. Conclusion • Nursing Homes and Hospice go together like peanut butter and jelly • It is good for the: • Patients • Caregivers • Families • Nursing Homes • Hospices

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