Brain Autopsy Guide

Reasons families request brain autopsies

Confirmation of diagnosis
A confirmed diagnosis provides families with vital medical information and may be valuable to future generations. This important data enhances a family's medical history and may be necessary for family members to participate in research studies.

Research Advancement
The deceased person may have participated in a research study aimed at finding the causes of Alzheimer's disease. Granting permission for brain autopsy may have been a condition for participation in a research program.

Accurate reporting
It is possible that the number of those afflicted with Alzheimer's Disease is underestimated. that Alzheimer's disease be listed on the death certificate as the underlying cause of death helps the local Board of Health maintain accurate records.

Questions families may ask

Question: Will brain autopsy cause disfigurement?

Answer: There should be no apparent marks to the body as the result of a brain autopsy. The autopsy should not interfere with the family's request for an open casket.

Question: Will the funeral arrangements be delayed?

Answer: When arranged prior to the individual's death, brain autopsy generally does not delay funeral arrangements.

Answer: Families will usually receive a written report about 6 to 12 months after the autopsy has been performed. However, in some areas it may take longer.

Question: What are the costs involved?

Answer: The cost of brain autopsy varies in different areas depending on the resources available.

Question. Can the organs of my loved one be donated?

Answer: Because the causes of Alzheimer's disease are unknown, the Alzheimer's Association does not recommend donating any body organs for transplant purposes.

 

Ways funeral directors can support families

When the necessary pre-arrangements have been made:

• Contact the pathologist or neuropathologist who will perform the autopsy to assist in coordinating the process.
• Assist in obtaining required consent at the time of death.
• Provide transportation for the deceased person to the location where the brain autopsy will be performed and to the funeral home after the brain autopsy is complete.
• Explore the possibility of having the brain removed at the funeral home.

When the necessary pre-arrangements have not been made:

• Assist the family in locating a pathologist or neuropathologist.
• Assist in identifying and securing appropriate consent forms.
• Contact your local Alzheimer's Association Chapter.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Hospice Care Information

Courtesy of Hospice Care of Nebraska

Hospice Admission Criteria:

• Life-limiting illness
• Prognosis of six (6) months or less (if disease follows its normal course)
• Physician must order hospice care
• Individual is not seeking curative treatment
  

Services Provided by Hospice:

• Nurses
• Medical and Social Workers
• Clergy
• Volunteers
• Therapy Services
• Family member bereavement counseling and support
• Education and Inservice Programs
• 24-hour availability
  

Financial Responsibility of Hospice:

• Visits made by hospice staff and volunteers
• Medications
• Supplies
• Medical equipment
• Therapies
• Hospitalizations
• Respite care
• Bereavement counseling service
  

What Does Medicare Cover?

• Physician services
• Nursing care
• Medical appliances and supplies, as appropriate
• Drugs for symptom management and pain relief
• Short term inpatient and respite care
• Homemaker services, home health aides and volunteers
• Physical and other therapies
• Counseling: social work, bereavement and pastoral care

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Job Description for a Hospice Registered Nurse

Courtesy of Hospice Care of Nebraska

JOB CODE: 2604

JOB TITLE: Registered Nurse

REPORTS TO: Patient Care Coordinator

GENERAL PURPOSE: To provide nursing assessment, planning and care to maximize the comfort and health of patients and families in accordance with the interdisciplinary plan of care. Supports the Provider Relations activities of the organization.

ESSENTIAL JOB FUNCTIONS:

PLAN OF CARE:
Duties: Receives patient assignments from the Patient Care Coordinator. Assumes responsibility for a patient/family that includes assessing, planning, implementing and evaluating care. Obtains data on physical, psychological, social and spiritual factors that may influence patient/family health status and incorporate that data into the plan of care.

COMMUNICATING PATIENT CARE:
Duties: Initiates communication with attending physicians, other hospice staff members, and other agencies as needed to coordinate optimal care and use of resources for the patient/family. Maintains regular communication with the Patient Care Coordinator to review care. Maintains regular communication with the attending physician concerning patient/family care. Attends the Hospice Team Meetings and other patient conferences as deemed necessary by the Patient Care Coordinator.

MAINTAINS PATIENT RECORDS:
Duties: Maintains up-to-date patient records so that problems, plans, actions and goals are accurately and clearly stated and changes are reflected as they occur.

COORDINATING PHYSICAL CARE:
Duties: Accepts responsibility for coordinating the physical care of the patient by teaching primary caregivers, volunteers, employed caregivers, or by providing directed care as appropriate.

INSTRUCTIONS FOR CARE:
Duties: Instructs the patient and caregiver:how to administer medication and recognize side-effects; how to perform personal care and oral hygiene; how to assist in lifting, moving, ambulation and exercise; how to prepare for the events preceding death.

FAMILY/PATIENT SUPPORT:
Informs the Patient Care Coordinator of unusual or potentially problematic patient/family issues. Provides appropriate support at time of death. Shares in providing 24-hour seven-days-a-week coverage to patients and families.

HOME HEALTH AIDE:
Duties: Makes home health aide assignments, prepares written instructions for the aide and supervises the aide in the home.

CONTINUING ED:
Duties: Participates in hospice orientation and ongoing education programs.

POLICIES AND REGULATIONS:
Duties: Demonstrates familiarity with policies of the hospice and state(s) and federal regulations pertaining to nursing services.

OTHER DUTIES: Participates on committees, special projects and other related duties as assigned.

PHYSICAL & SENSORY REQUIREMENTS:
(WITH OR WITHOUT MECHANICAL DEVICES)

Mobility, reaching, bending, lifting, talking, fingering, sitting, carrying, standing, grasping, fine hand coordination, ability to hear, ability to read and write, and ability to remain calm under stress.

QUALIFICATIONS:

• Registered nurse currently licensed in the state(s).
• Previous experience in hospice, home health, geriatrics or general medical/surgical nursing.
• Demonstrated commitment to hospice philosophy of care.
• Must be able to relate professionally and positively to corporate staff and to work cooperatively with other associates at all levels.
• Must have 24-hour access to a motor vehicle and maintain personal auto liability insurance coverage.
• Must have a current driver's license.
• Must be capable of maintaining regular attendance.
• Must meet all local health regulations, pass post-offer drug test, and pass post-employment physical exam, if required.
• Must be capable of performing the essential job functions of this job, with or without reasonable accommodations.

JOB DESCRIPTION REVIEW: I understand this job description and its requirements and that I am expected to complete all duties as assigned. I understand the job functions may be altered from time to time.

I have noted below any accommodations that are required to enable me to perform these duties. I have also noted below any job responsibilities or functions which I am unable to perform, with or without accommodation.


____________________
Associate's Signature Date

_________________________________ ____________________
Supervisor or Orientation Leader Signature Date

cc: Personnel File
Individual Associate


Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Medicare Hospice Benefits

Courtesy of Hospice Care of Nebraska

Hospice services are covered 100 percent under the Medicare Hospice Benefit. The Hospice Medicare Benefit is provided under Medicare Part A. To receive the Hospice Medicare Benefit under Medicare Part A, the patient has to elect the Hospice Benefit and waive the traditional Medicare Part A Hospital Benefit. Medicare will continue to make payment for physician service if the attending physician is not a hospice employee. Medicare will also continue to cover services or conditions unrelated to the life-limiting illness.

Coverage under the Medicare Hospice benefit is broken into benefit periods:

• Benefit Period ONE--90 days
• Benefit Period TWO--90 days
• Additional Unlimited 60-day period

The Medicare Hospice Benefit can be revoked at any time by completing a revocation statement received from the Hospice office. Traditional Medicare Part A Hospital coverage is reinstated at that time. If the Medicare Hospice Benefit is revoked in the middle of a benefit period, the patient loses the remaining days in the benefit period. For example, if a patient revokes the Medicare Hospice Benefit after the first 10 days, the patient gives up the remaining 80 days in the first benefit period. The patient would then have the second period and additional unlimited 60-day periods.

*NOTE: Patient admissions and patient services are provided by Hospice Care of Nebraska without regard to race, color, national origin, disability, age, marital status, diagnosis, communicable disease, religion, gender, sexual orientation, or resuscitation status.

The Hospice Medicare Benefit pays 100 percent for:

• Medications related to the life-limiting illness
• Durable medical equipment (hospital beds, walkers, commodes, oxygen equipment, etc.) related to the life-limiting illness
• Intermittent visits by a visiting nurse and social worker
• 24-hour on-call nurse and accessibility of interdisciplinary team members
• Home health aide for bathing and a homemaker for light housekeeping
• Physical, speech and occupational therapists
• Hospice chaplain
• Dietitian for nutritional consultation
• Volunteers for respite, companionship, etc.
• Inpatient Respite--up to five days of inpatient care provided in an inpatient facility authorized by the Hospice Care of Nebraska
• Continuous Care--provided in the patient’s home on a 24-hour basis for the specific purpose of controlling acute medical symptoms. The goal of the care is to provide support to the patient/family in order to maintain the patient at home.
• Inpatient care for symptom control related to the life-limiting illness. This applies to symptoms that are not controlled and need a highly skilled approach to regain a level of comfort for the patient. Inpatient care is provided in contracted facilities only.
• The Hospice Medicare Benefit does NOT include a 24-hour caregiver.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Progressive Changes in the Terminal Phase/Hospice Plan of Care - Charts

Important things to remember about the following information:

• Progressive changes during the terminal phases in the physical and psychosocial condition varies with each patient.

• The Hospice Team includes the following people, each having specific duties: the medical director, registered nurse, case manager, home health aides, social service workers, chaplain, volunteers.

• All care is coordinated and integrated with the staff of a skilled nursing facility if the patient becomes a resident of a skilled nursing facility anytime during this period.

Month 6

Progressive Changes:	Generally patient is ambulatory and coherent Some side effects from curative measures and/or medications Initial stages of grief, anger and denial
Medical Director:	Initial examination of patient Certification for hospice care Develop plan of care Orders
RN Case Manager:	Assessment for hospice conference with family Confer with physician Develop plan of care Order medications Order DME (Durable Medical Equipment) Train and instruct primary caregiver(s)
Home Health Aides:	Start person care program Instruct primary caregiver(s)
Social Service Workers:	Assess patient and family psychosocial/bereavement needs to develop plan of care Establish trusting relationships with patient and family
Chaplain:	Spiritual assessment Confer with other team members for development of plan of care
Volunteers:	Conference with hospice team for direction Learn interests of patient Initial visitations

Month 5

Progressive Changes:	Some weight loss, weakness, symptoms manifested Signs of stress Growing acceptance of terminal state Fear, depression
Medical Director:	Monitor and assess plan of care ICC meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Follow plan of care and direct team members Provide direct care Report observations Establish rapport with patient and family
Home Health Aides:	Establish supportive, loving, trusting relationship with patient and family Provide personal care services as per plan of care
Social Service Workers:	Monitor and implement approved plan of care Determine need for referral to other community resources Identify dysfunctional patient/family problems Make recommendations
Chaplain:	Implement plan of care conference with patient/family who desire spiritual support Assess other needs requiring psychosocial intervention
Volunteers:	Establish supportive, trusting relationship via ongoing visit and contact

Month 4

Progressive Changes:	Continuing weight loss, decreasing appetite Physical manifestation Symptoms more pronounced Grief work, planning, and resolving
Medical Director:	Monitor and assess plan of care ICC Meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Monitor ongoing implementation of approved plan of care Increased need for symptom management and pain control Evaluate psychosocial needs of family and patient with other team members
Home Health Aides:	Assist with personal care needs Identify and report special needs to Case Manager
Social Service Workers:	Continued monitoring of plan of care Ongoing assessment of patient/family abilities to cope with terminal diagnosis and its impact on daily living
Chaplain:	Implement plan of care as appropriate Contact spiritual support person of denomination of patient/family choice
Volunteers:	Assist with letter writing, telephoning, reading, music Provide emotional support to patient and family Respite for family

Month 3

Progressive Changes:	Physical deterioration apparent Symptomatology and pain increase Beginning of withdrawal Acceptance of terminal disease
Medical Director:	Reassessment for new benefit period Monitor and assess plan of care ICC meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Monitor ongoing implementation of approved plan of care Increasing need for order changes to manage symptoms and control pain Continued coordination of patient, family and team
Home Health Aides:	Continued assistance with personal care needs Identify and report special needs to Case Manager
Social Service Workers:	Evaluate patient/family coping abilities and assess appropriateness of respite care Assess need for referral to other community resources
Chaplain:	Implement plan of care as appropriate Encourage family to continue observance and rituals that provide meaning and support to them
Volunteers:	Arrange for personal preferences of patient: food, visitation, special interests Respite for family

Month 2

Progressive Changes:	Progressive physical deterioration Symptoms increase Pain management primary May be bedridden Increasing withdrawal Resolution and closure
Medical Director:	Monitor and assess plan of care ICC Meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Monitor more closely Increase visits, as needed Implementation of approved plan of care Daily review of symptom management and pain control Increase family support Coordination of psychosocial plan of care
Home Health Aides:	Provide bathing, dressing and other personal care needs, as necessary Provide comfort measures Report needs to Case Manager
Social Service Workers:	Continued monitoring of approved plan of care Assess patient and family for signs of dysfunctional grieving and provide appropriate intervention Facilitate support systems
Chaplain:	Implement plan of care Provide spiritual support as appropriate to patient and family wishes Assist with final arrangements as requested
Volunteers:	Provide respite periods for family Assist with visitation and personal needs

Final Month

Progressive Changes:	End-stage - pronounced withdrawal Requires total care Intensive management of symptoms and pain No appetite
Medical Director:	Monitor and assess plan of care ICC Meeting Increased need for medication changes to manage symptoms and control pain Support family
RN Case Manager:	Daily monitoring of end-stage process Monitor side effects of medications, symptoms manifested and pain management Coordinate preparation for death with other team members Increase patient/family support
Home Health Aides:	Increase contact with patient and family for direct care Assure all personal care needs are met Provide comfort measures
Social Service Workers:	Continued monitoring of approved plan of care Assist patient and family in resolution and closure Ensure final arrangements Facilitate support systems
Chaplain:	Implement plan of care Provide support to patient and family, as well as hospice staff in preparing for separation Assist with final arrangements as requested
Volunteers:	Provide respite periods for family Provide patient with emotional support

After Death

Medical Director:	May have further communication with the family
RN Case Manager:	Call and/or visit family Assess special bereavement needs May attend funeral Complete discharge charting
Home Health Aides:	May attend funeral
Social Service Workers:	Call and/or visit family May attend funeral Begin bereavement follow-up Identify dysfunctional grieving and initiate appropriate intervention
Chaplain:	May visit family Instruct family regarding bereavement groups and memorial service Provide grief/bereavement support
Volunteers:	Provide bereavement support to family and significant others Maintain regular contact for up to 12 months

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Typical Responses During Grief

Courtesy of Hospice Care of Nebraska

Physical Sensations:

• Tightness in chest
• Over-sensitivity to noise
• Dryness of mouth
• Breathlessness
• Weakness of muscles
• Lack of energy
  

Behaviors:

• Absent-mindedness
• Social withdrawal
• Sleep disturbances
• Restlessness/over-activity
• Appetite disturbances
• Crying, sighing
• Visiting places that are reminders of the deceased
• Calling out for the deceased

Thoughts:

• Disbelief
• Confusion
• Preoccupation with thoughts and memories
• Sense of his/her presence

Feelings:

• Sadness
• Anger
• Guilt or self-reproach
• Anxiety
• Loneliness
• Numbness
• Fatigue
• Helplessness
• Shock
• Yearning
• Relief

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.