End of Life with Dementia Sue Quist RN, CHPN

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1 End of Life with Dementia Sue Quist RN, CHPN Objectives: Describe the Medicare hospice benefit and services. Discuss the Medicare admission criteria for hospice patients with dementia due to Alzheimer s and other related disorders. Describe symptom management strategies at end of life for patients with dementia. 1

2 What is Hospice? A program that specializes in caring for people with a terminal illness and limited life expectancy Focus is on comfort vs. aggressive care and treatment Client and family centered care focusing on quality of life Provides management of physical symptoms along with emotional and spiritual care of the patient and family What is Hospice? Does not prolong life or hasten death Provides care in various home settings including, private homes, assisted living homes and nursing homes 2

3 Who Pays for Hospice? Medicare Medical Assistance Private Insurance Care from Hospice of Douglas County is provided regardless of ability to pay Who Provides Hospice Care? The Hospice Team consists of many individuals with specific roles to meet the needs of the patient and family Medical Director Primary Care Physician Nurse CHPN, RN, LPN Social Worker Chaplain Hospice Aides (CNA) 3

4 Who Provides Hospice Care? Music Therapist Massage Therapist Counselor Physical, Occupational and Speech Therapists Therapy Dogs Volunteers Benefits of Hospice Care Compassionate care at end of life by qualified hospice team members Primary Registered Nurse assigned to manage care of patient, coordinate team members and help direct care for the patient RN on call 24/7 to provide care and support for patient and caregivers Provide medications and treatments as needed to manage pain and other symptoms 4

5 Benefits of Hospice Care Provide necessary equipment and supplies needed for comfort and related to terminal illness Teach family and other caregivers how to care for patient Educate caregivers on progression of illness and end of life care Grief support and bereavement care Who Qualifies for Hospice Care? Terminally ill persons whose life expectancy is six months or less given the current progression of their disease process (any age any diagnosis) Minnesota Medical Assistance 12 months Patient is seeking palliative care rather than curative treatment 5

6 Who Qualifies for Hospice Care? Patient s Physician and Hospice Medical Director needs to agree with admission to hospice Patient/Family needs to agree to admission to hospice Care provided wherever the patient calls home. Patients need a 24 hour caregiver Triggering Events for Hospice Referral Recurrent infections Recurrent hospitalizations/clinic visits Repeated home care admissions Declining health Weight loss Decrease in independence in ADL s 6

7 Triggering Events for Hospice Referral Increase in pain/interventions Unexplained weight loss Patient/family request Change in goals of care Provider referral Other Dementia due to Alzheimer's Disease and Related Disorders Patients will be considered to be in the terminal stage of dementia (life expectancy of six months or less) if they meet the following criteria: Patients with dementia should show all the following characteristics: Stage seven or beyond according to the Functional Assessment Staging Scale; Unable to ambulate without assistance; Unable to dress without assistance; Unable to bathe without assistance; Urinary and fecal incontinence, intermittent or constant; No consistently meaningful verbal communication: stereotypical phrases only or the ability to speak is limited to six or fewer intelligible words. 7

8 Dementia due to Alzheimer's Disease and Related Disorders Patients should have had one of the following within the past 12 months: Aspiration pneumonia; Pyelonephritis; Septicemia; Decubitus ulcers, multiple, stage 3 4; Fever, recurrent after antibiotics; Inability to maintain sufficient fluid and calorie intake with 10% weight loss during the previous six months or serum albumin < 2.5 gm/dl. Fast Scale (Functional Assessment Stage) Stage 7 A) Ability to speak limited to approximately 6 intelligible different words in the course of an average day or in the course of an intensive interview. B) Speech ability is limited to the use of a single intelligible word in an average day or in the course of an intensive interview C) Ambulatory ability is lost (cannot walk without personal assistance.) D) Cannot sit up without assistance (e.g., the individual will fall over if there are not lateral rests [arms] on the chair.) E) Loss of ability to smile. F) Loss of ability to hold up head independently. 8

9 Dementia due to Alzheimer's Disease and Related Disorders Local Coverage Determination (LCD): Hospice - Determining Terminal Status (L33393) Providing Care for the Dying Always with patient goals in mind Focus on comfort for the patient with all decisions Care is directed by the hospice RN Everyone has a role in the patients hospice journey Hospice staff Caregivers Family, friends and other loved ones 9

10 Dying is an Individualized Experience There is no typical death Patient preferences Nurses advocate for choices Setting of death Support Psychological and emotional considerations Goals of Symptom Management Relieve and PREVENT the symptom from occurring Use of non pharmacologic interventions Pharmacologic interventions are a significant part of symptom management Medications should be used judiciously in appropriate combinations 10

11 Managing Symptoms for Patients with Dementia Restless and Agitation unable to be still, may pick at clothes, perform repetitive movements, can be a symptom of physical discomfort or pain, can be from unresolved emotional or spiritual concerns Evaluate patient for pain, full bladder or constipation Soft music, holding hands or light touch may help Limit loud noises Give medications for anxiety/restlessness or agitation as ordered Notify hospice nurse if these behaviors develop Managing Symptoms for Patient s with Dementia Confusion and Disorientation confusion about the time and their surroundings, may not be able to identify family or those around them, hallucinations may occur Always introduce yourself and what you are going to do for them Provide reassurance to them Never argue with the patient Notify hospice nurse if patient is hallucinating, medication may be needed 11

12 Managing Symptoms for Patients with Dementia Anxiety patient is still oriented Delirium patient is having hallucinations and confusion Managing Symptoms for Patients with Dementia Treatment of choice for anxiety is Ativan: Lorazepam (Ativan) 0.25mg 2mg PO/SL q3h prn Treatment of choice for delirium is Haldol: Haloperidol (Haldol) 0.5mg 2mg PO/SL q6h prn 12

13 You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but to live until you die. -Dame Cicely Saunders, Founder of the first hospice 13

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