24: Late Stages: Hospice & Bereavement

This program will discuss:

• End-of-life and hospice issues
• Hospice services and advance directives
• The bereavement process

• There are no easy answer when its comes to the care of another
• Our hope is to offer you useful information and guidelines for caring for someone with dementia
• These guidelines will need to be adjusted to suit your own individual needs

• As Alzheimer’s disease progresses, individuals will need increasing levels of supervision and assistance
• Not all people with the illness will progress in exactly the same way
• Classification of stages
• Early, middle, late and end stages

Early stage:

• Forget appointments, names, and places
• Lose valuable items
• Get lost in less familiar places
• Depression often results from these early losses.
• Typically lasts 2 to 3 yr

Middle stage:

• Difficulty managing money, legal affairs, workplace affairs, and driving
• Home maintenance, housekeeping, and cooking will be frustrating and dangerous
• Difficulty functioning in new environments
• Get lost even in familiar environments
• Personality changes become noticeable
• Manage personal care with encouragement
• Typically lasts 3 to 4 yr

Late stages

• Increasing difficulty with activities of daily living
• Difficulty understanding the environment
• Difficulty with language
• Communication difficulties
• Sleep difficulties
• Need 24 hour care
• Typically lasts 4 to 7 yr

Terminal or end stage

• Not be expected to live much longer and hospice care might be considered
• No longer ambulatory
• Incontinent
• Lose weight
• Difficulty chewing food and communicating
• Not recognize people or objects
• Rarely lasts more than 1 yr

Final stages

• Difficult to know how close an individual is to death
• Risk of malnutrition from muscle contractures and inability to swallow
• Potential complications of being bedridden
• Requires extensive care
• Death usually occurs as a result of some other medical condition or shutdown of the brain

• Robert has entered the late stages of Alzheimer’s disease
• Placed in a residential facility when he developed difficulty speaking and controlling his bowel and bladder
• Unsteady on his feet and took several falls
• Stopped speaking and has difficulty swallowing
• Spends his time in bed or in a wheelchair
• Losing weight
• Screams and groans when he is moved
• Does not seem to recognize anyone
• For the past 24 hrs, he has had a mild fever of unclear origin

What should Mary do for Robert at this point?

• A. Initiate artificial feedings
• B. Admit Robert to a hospital and obtain intensive nursing care
• C. Place Robert in hospice care

Choice A: Initiate artificial feedings, is not the best option.

Choice B: Admit Robert to a hospital and obtain intensive nursing care, is a possible option.

Choice C: Place Robert in hospice care, is the best choice in this situation.

• Artificial Feeding
• Nasogastric tube feeding
• Tube inserted through the nose into the stomach
• Useful on temporary basis
• Percutaneous endoscopic gastrostomy (PEG)
• Surgical placement of a tube through the upper abdomen and stomach wall
• Useful on temporary basis
• Total parenteral nutrition (TPN)
• Delivers nutrients by intravenous (IV) infusion directly into the blood stream
• Can add to confusion and discomfort
• Artificial feeding does not prolong life, reduce the risk of infection or pressure ulcers, or improve the person’s function or memory
• Can cause pain, discomfort, agitation, infections, and decrease the quality of life

• Hospitalization
• Aggressive treatments have low rates of success among persons with dementia
• Can hasten functional and cognitive decline and even death
• Increased risk of infections
• Can have better long term outcomes with treating pneumonia and other infections at home or in a care facility
• “Do Not Hospitalize” clause in advance directives
• “Do Not Resuscitate” clause in advance directives

• Hospice Care
• Palliative care
• Comfort and symptom relief
• Avoids
• Tube feedings
• CPR
• Hospitalization
• Dialysis
• Supports families through the grief
• Dying naturally with dignity

• Hospice Care Process
• Medicare Part A coverage
• Life expectancy of six months or less
• Waive the right for Medicare to pay for other services to treat the terminal illness
• Life expectancy guideline is based on the FAST (Functional Assessment Staging) scale
• Stage 7C or greater
• No control over bowel or bladder,
• Little or no speech
• Unable to walk.
• Difficulty swallowing and refusing food
• Other neurological signs
• Up to the physician to make the judgment about stage and life expectancy

• Written plan reviewed by physicians and the hospice agency team
• Services
• Nursing care
• Physical or occupational therapy
• Speech-language pathology services
• Certified home health aide services
• Medical social services
• Physician services
• Medical supplies, equipment, and medication
• Short-term inpatient care for less than five consecutive days
• Counseling for the family for grief and bereavement
• Medicare and Medicaid insurances will cover the cost except for 5% of medications and 5% per day for Respite Care
• Hospice is available for 6 months, but can be a little longer if justified by a physician and funding is approved

For additional information about hospice care, click on the provided links www.cms.hhs.gov www.medicare.gov www.nhpco.org

• Physician will make a referral to a hospice agency
• Representative of the agency will visit the person with Alzheimer’s and the family to make an assessment
• Physician will order the appropriate services
• Hospice nurse will meet with the family and develop a plan based on hospice recommendations
• Nursing assistant will visit to assist with care
• Periodic assessments by the hospice nurse with revision of plans accordingly
• Grief counseling
• Medication for pain and comfort
• Food and fluid
• Spiritual support
• Counseling regarding autopsy and funeral services

• End of life decisions
• Discuss with family and physician
• Living will
• Legal right to limit, refuse, or discontinue treatments
• Durable power of attorney for health care
• Health care guardian
• Advance directive forms recognized by specific states
• Make available to family, physicians, and hospice agency

• Helps family members understand the illness
• Can advance knowledge of the disease
• Research institutions will perform brain autopsies
• Requires prior agreement with the research organization
• Specialist must remove the brain and prepare it for transport to the research facility

Click here to find an institution in your area that will perform brain autospises

• The family’s grief and bereavement experience is quite varied and complex
• Families are often emotionally conflicted
• Combination of grief, relief and guilt
• Grieving can begin early in the illness through loss of the person’s various capacities and personality changes.

• Grief Paradox
• “I thanked God.”
• “I couldn’t cry.”
• “I didn’t know what to do with myself.”
• Long Good-bye
• Sudden death
• Illness with time to say goodbye
• Prolonged illness

• Pre-diagnosis
• Diagnosis
• Relief
• Fear
• Loss of capacities with disease progression
• Losses for the person with Alzheimer’s
• Role responsibilities
• Reciprocity
• Coherent speech
• Losses for the caregiver
• Communication
• Recognition
• Companionship
• Personality
• Person as known
• Self-care
• Privacy and freedom
• Personhood
• Caregivers feel a sense of abandonment

• Praying for death
• Most families do all that they can for their affected family member
• The funeral that never ends
• Ongoing grief

Three responses:

• Reengagement
• Commitment to a cause
• Depression

Reengagement

• Understand the illness, have strong spiritual beliefs, and have supportive families
• Honor the loved one’s life through a rite of passage
• Support groups
• Meet other people while visiting their loved one in a care facility and form friendships

Commitment to a cause

• Support groups
• Internet discussion sites
• Ex-caregivers draw on their experiences to provide support and advice to others
• Volunteer endeavors in the community
• Provide structure to one’s schedule, satisfaction of accomplishment, and a sense of purpose
• Develop new acquaintances and friends

Depression

• More likely among older caregivers with medical problems or caregivers who did not receive help or support while caregiving
• Depression of unresolved grief can lead to suicide attempts or poor health
• Join a bereavement support group
• Get individual counseling

• End stage care alternatives
• Artificial feeding, hospitalization, and hospice care
• Three main types of artificial feeding
• Nasogastric tube feeding
• Percutaneous endoscopic gastrostomy
• Total parenteral nutrition (TPN)
• Hospitalization and aggressive treatments for a person at the end-stage of Alzheimer’s have risks
• Hospice care provides comfort at the end of a person’s life and support for the family
• End-of-life planning
• Advance directives
• Assignment of a durable power of attorney for health care
• Caregivers grieve throughout the course of Alzheimer’s disease
• Ways to deal with grief
• Engage back with family and friends
• Committing to a cause
• Depression

Written by:
Catherine M. Harris, PhD, RNCS.
Mindy J. Kim-Miller, MD, PhD

Edited by:
Sasha Asdourian

www.LightBridgeHealthcare.com

• Bernick L, Nisan C, Higgins M. (2002). Care of the body: maintaining dignity and respect. Perspectives.;26(4):10-4.
• Boyd CO and Vernon GM. (1998). Primary care of the older adult with end-stage Alzheimer’s disease. The Nurse Practitioner. 23 4:63–83.
• Brashler R; Savage TA; Mukherjee D; Kirschner KL. (2007). Ethics in practice. Feeding tubes: three perspectives. 14(6): 74-7.
• Charlson ME, Pompei P, Ales KL and MacKenzie CR. (1987). A new method of classifying prognostic comorbidity in longitudinal studies:Development and validation. Journal Of Chronic Disease. 40(5):373–383.
• Di Giulio P, Toscani F, Villani D, Brunelli C, Gentile S, Spadin P. (2007). Dying with advanced dementia in long-term care geriatric institutions:a retrospective study. J Palliat Med. 2008 Sep;11(7):1023-8.
• Eisdorfer C, Cohen D, Paveza GJ, et al. (1992). An empirical evaluation of the global deterioration scale for staging Alzheimer’s disease.American Journal of Psychiatry 149(2):190–194.
• Epps, C.D. (2001). Recognizing pain in the institutionalized elder with dementia. Geriatric Nursing, 22 (2), 71-77.
• Gillick MR; Volandes AE. (2008). The standard of caring: why do we still use feeding tubes in patients with advanced dementia? Journal of the American Medical Directors Association; 9(5): 364-7.
• Hertogh CM, de Boer ME, Dröes RM, Eefsting JA. (2007). Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia for patients with dementia. Am J Bioeth. 7(4):48-56.
• Hoffman, SB & Kaplan M. (1996). Special care programs for people with dementia. Health Professions Press.Baltimore.
• Kuhn DR, Ortigara A, Farran CJ. (1997). A continuum of care in Alzheimer’s disease. Advanced Practice Nursing Quarterly. 2(4):15–21.
• Lamb VL, Sloan FA, Nathan AS (2008). Dementia and Medicare at life’s end. Health Serv Res. 43(2):714-32.
• Lopez-Tourres F, Lefebvre-Chapiro S, Fétéanu D, Trivalle C. (2008). [Palliative care and Alzheimer disease.] Rev Med Interne. 2008 Oct 31.[Epub ahead of print]
• Luchins DL, Hanrahan P, Murphy K. (1997) Criteria for enrolling dementia patients in hospice. Journal American Geriatric Society 45(9):1054–1059.
• Modi, Seema , Moore, Cassandra (2005). Which late-stage Alzheimer’s patients should be referred for hospice care? Journal of Family Practice; 54:984-986.
• Munn JC, Hanson LC, Zimmerman S, Sloane PD, Mitchell CM. Is hospice associated with improved end-of-life care in nursing homes and assisted living facilities? J Am Geriatr Soc. 2006 Mar;54(3):490-5.
• O’Donovan, S. (1996). A validation approach to severely demented clients. Nursing Standard. 11 (13-15), 48-52.
• Paniagua MA; Paniagua EW. (2008). The demented elder with insomnia. Clinics in Geriatric Medicine, 24(1): 69-81.
• Pinderhughes ST, Morrison RS. (2003). Evidence-based approach to management of fever in patients with end-stage dementia. J Palliat Med.;6(3):351-4.
• Powers BA, Watson NM. Meaning and practice of palliative care for nursing home residents with dementia at end of life. Am J Alzheimers Dis Other Demen. 2008 Aug-Sep;23(4):319-25. Epub 2008 May 4.
• Prigerson, HG (2003). Costs to Society of Family Caregiving for Patients with End-Stage Alzheimer’s Disease. N Engl J Med. 2003 Nov 13;349(20):1891-2.
• Sally Planalp a; Melanie R. Trost (2008). Communication Issues at the End of Life: Reports from Hospice Volunteers Health Communication.23(3):222 – 233.
• Schonwetter RS; Han B; Small BJ; Martin B; Tope K; Haley WE. (2003). Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines. American Journal of Hospice & Palliative Care 20(2): 105-13.
• Triplett P, Black BS, Phillips H, et al. (2008). Content of advance directives for individuals with advanced dementia. J Aging Health. 2008Aug;20(5):583-96.
• Tully MW, Matrakas KL, Muir J, Musallam K. (1997). The eating behavior scale: a simple method of assessing functional ability in patients with Alzheimer’s disease. Journal Of Gerontological Nursing 23:9–15.
• Vesey S; Leslie P; Exley C (2008). A pilot study exploring the factors that influence the decision to have PEG feeding in patients with progressive conditions. Dysphagia; 23(3): 310-6.
• Volicer L. (2005). End-of-life Care for People with Dementia in Residential Care Settings. Alzheiemer’s Association. Retrieved from http://www.alz.org/national/documents/endoflifelitreview.pdf.
• Watts V; Turnpenny B; Brown A (2007). Feeding problems in dementia. Geriatric Medicine, 37(8): 15-6, 18-9.