End Of Life Issues

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End Of Life Issues
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Learning Objectives Participants will be able
to

• Understand palliative hospice care
• Describe emotional issues related to the death
  of a loved one
• Identify practical issues related to dying
  death
• Know issues that must be discussed with the
  dying
• Identify steps of funeral planning
• Recognize signs that death is nearing
• Identify and use self care techniques
• Know steps to take after death has occurred

We value your opinion. Please ask your instructor
for an evaluation form at the close of this
session.
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Death Dying

• While death is a universal experience, each is
  unique. Death has a different meaning for each
  individual, and caregivers of dying persons face
  complex challenges and emotions. 

It is natural to die as to be born. --Francis
Bacon
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Death Dying

• In earlier times, death took place at home with
  one's own family directly involved in caregiving
  and few medical options to consider - Death was
  also accepted as a part of life
• Death today
• Often occurs in an institution with the person
  surrounded by sophisticated, high-tech equipment
• or
• or at home following multiple hospital stays and
  home care and possibly hospice
• Often as the illness or disability progresses,
  the amount of caregiving increases rapidly with
  little warning

The average life span in 1900 was 47 the
fastest growing population in the USA is older
adults with rapid increase in the number of
persons age 100
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Emotional Spiritual Issues Talking About
Death

• Talking about death is difficult for most people
• The topic of death may be particularly
  uncomfortable to discuss within a family
• For most people, the older one gets the more
  comfortable the topic of death becomes
• Avoiding an honest acknowledgement of death can
  create unnecessary pressures and may harm
  relationships and impact caregiving
• Speaking honestly about death takes courage, but
  it brings with it many benefits

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Talking About Death Things that Must Be
Discussed

• Emotional/Spiritual Discussions
• Where he/she would like to die, if there's a
  choice.
• Who he/she wants to come see him/her near the
  end.
• Is there anyone he/she really doesn't want as a
  visitor?
• Is there anything he/she needs/wants to say that
  he/she will be sorry if, on his/her deathbed,
  still hasn't been said?

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Common Experiences of Caregivers at the End of
Life
Healthcare and activities related to the end of
life may be confusing and overwhelming, creating
conflicting thoughts and emotions for the
caregiver and other family members

• Denial and feeling unprepared as the illness
  progresses
• Chronic emotional fatigue
• Guilt
• Frustration of not understanding the course or
  prognosis of the illness
• Anger towards self, the care recipient, and other
  caregivers

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Common Experiences of Caregivers at the End of
Life, 2

• Grieving may start before the death
• Sadness and grief
• Anxiety over unexpected and increasing financial
  burdens
• Confusion about how to deal with complex legal
  issues
• Stress on one's own immediate family and
  relationships

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Emotional Spiritual Issues

• As we face the reality that our loved one is
  dying
• Priorities may shift - lifes details can fade
  to the background
• We may find ourselves looking at deeper meanings
  
• The desire to resolve difficulties in
  relationships often becomes a priority
• Grief generally starts before the patients death
• Impending death represents, to many, an
  opportunity to evaluate ones life.
• People often contemplate their accomplishments
  and acknowledge their shortcomings and regrets.

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What is Palliative? Care

• Palliative care provides relief to a
  terminally-ill person by managing symptoms and
  pain
• Goal is not to cure, but to provide comfort and
  maintain the highest possible quality of life for
  as long as life remains
• Well-rounded palliative care programs also
  address mental health and spiritual needs.
• The focus is not on death, but on compassionate
  specialized care for the living
• Palliative care may be delivered in hospice and
  home care settings or in hospitals 

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What is Hospice?

• Program that provides special care for people who
  are near the end of life and for their families
• Care can be provided at home, in freestanding
  facilities, or in hospitals
• Recognition that the needs of the dying are
  different from those who expect to recover
• Acknowledgement that supporting those who are
  caring for the patient is part of caring for the
  patient  

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Use of Hospice

• Too few know about hospice or take advantage of
  what it can offer
• In a 1999 survey by the National Hospice
  Foundation,
• only 22 of those who experienced the terminal
  illness of a loved one used hospice services
• 80 of those who responded to the survey did not
  know the meaning of the term hospice
• Use of hospice and palliative care has increased
  in recent years

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Talking About Death - Things that Must Be
Discussed

• Reassure the care receiver that he/she will not
  die alone or in great pain.
• "I will stay with you to the very end. We will
  ask the doctor to give you whatever you need to
  manage your pain."
• Discuss what his/her life has meant to others.
• Encourage him/her to talk about personal
  achievements.
• Find ways to say good-bye.

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Talking About Death - Things that Must Be
Discussed

• Practical Discussions (Medical/Legal/Financial)
• Where are -
• The official papers, such as the will, the
  medical power of attorney,
• The safe deposit box key and the box itself
• The telephone numbers and email addresses of
  one's nearest and dearest,
• Information about of funeral and/or memorial
  service wishes,
• Plans for disposition of that lifelong collection
  of knickknacks, etc., etc.

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Talking About Death - Things that Must Be
Discussed, continued

• What does he/she want to have happen in terms of
  medical intervention when/if he/she can no longer
  make his/her wishes clear?
• What are the major outstanding bill and/or
  payments due in the next few months?
• Would he/she like to donate his/her corneas,
  heart, lungs, to science or for transplant?
  (Timing is extremely important for things like
  this.)

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Practical Issues - A To-Do List" (In Preparation
for Death)

• If your  care receiver doesn't already have a
  will, encourage him/her to complete one.
• Know the location of bank, money market, mutual
  fund accounts, pensions, insurance policies, and
  retirement accounts.
• Discuss important information about family
  history, including the location of photographs,
  heirlooms and other irreplaceable items.

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Practical Issues - A To-Do List" (In Preparation
for Death)

• If possible, have your care receiver complete an
  advance directive. 
• Advance directives include
• Living Will or Healthcare Directive. This
  document allows one to state in advance his/her
  wishes regarding treatments that may prolong
  his/her life. 
• Healthcare Power of Attorney or Durable Power of
  Attorney for Healthcare Decisions. This document
  allows one to name a person to make healthcare
  decisions on his/her behalf.

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Cost of Funerals Updated 2009
Handout Worksheet for Funeral Planning

• Funerals and burials are among the most expensive
  purchases we make.
• The average cost of a funeral is 6500,
  excluding burial expenses. (Source National
  Funeral Directors Association which represents
  the 11 billion-a-year industry)
• Burial costs are an additional 2,000 or more.
• Caskets
• Wooden or metal often featured in funeral homes
  can cost 3000 to 4000
• 1500 are usually available on request

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Costs of Funerals, continued

• Flowers, obituary notices, acknowledgment cards,
  burial liners or vaults, and special
  transportation can add an additional 1,000 or
  more.
• Funeral and burial costs combined can easily
  reach as much as 10,000.

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Funeral Planning

• The Funeral Rule
• The Funeral Rule requires funeral homes to
  provide price lists of available options (general
  services, caskets, outer burial containers).
• Funeral  homes must disclose prices by telephone
  and offer lists for review at each facility. You
  should call or visit at least three funeral homes
  and cemeteries to compare prices. With three
  lists, you can more accurately assess the total
  costs and be able to compare.

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Funeral Planning
Remember that you don't need a costly funeral to
show your love or respect. Make arrangements that
are best for you and your family.
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Dying Timetable" (Signs that Death is
Approaching)

• As a person approaches the dying process, a
  natural slowing down of the bodys physical and
  mental systems occur.
• This process is different for each individual and
  may vary from hours to days, weeks, and even
  months.
• There are some signs and symptoms that may
  indicate that death is near. 

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Dying Timetable" (Signs that Death is
Approaching)

• One to three months
• Withdrawal from society.
• Increased fears, including a fear of being left
  alone.
• Increased awareness of spiritual and/or
  religious issues.
• Decreased food intake.
• Increase in sleep.
• Less communicative.

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Dying Timetable" (Signs that Death is
Approaching)

• One to two weeks
• Disorientation.
• Agitation.
• Visual or auditory hallucinations.
• Confusion.
• Picking at clothes.
• Decreased blood pressure.
• Pulse increase or decrease.
• Color changes, pale or bluish.

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Dying Timetable" (Signs that Death is
Approaching)

• One to two weeks (continued)
• Increased perspiration.
• Respiration irregularities.
• Congestion.
• Sleeping but responding.
• Complaints of body tired and heavy.
• Not eating, taking little fluids.
• Changes in body temperature, either an increase
  or decrease. 

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Dying Timetable" (Signs that Death is Near)

• Days or hours
• Intensification of above signs.
• Surge of energy.
• Decreased blood pressure, eyes glassy, tearing,
  half open.
• Irregular breathing, stop/start.
• Restless or no activity.
• Purplish knees, feet, hands, blotchy.
• Pulse weak and hard to find.
• Decreased urine output.

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Dying Timetable" (Signs that Death is Near)

• Minutes
• Labored breathing.
• Unresponsive to stimuli.
• Usually the more symptoms the care receiver
  experiences, the closer he/she is to death.
• If you are concerned or unsure about how to
  manage these or other symptoms, please call a
  health care professional.

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Self Care

• The care of your friend or family member depends
  on your ability to physically, emotionally and
  spiritually respond to his/her needs as well as
  to your own. 
• Self care is about meeting your needs so that you
  are physically, emotionally, and spiritually
  ready to meet the needs of your friend or family
  member.
• There are no rules about self-care except it
  should help you to feel replenished, comforted,
  or relaxed. 

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Self Care, 2

• Caregiving can be very demanding at times. But
  caring for a friend or family member can also be
  one of lifes most rewarding experiences.
• A wise person once said, "you cant draw water
  from a empty well.
• Self-care does not take a lot of time, nor does
  it have to be time away from your family or loved
  one.
• Self-care does take a commitment and an
  understanding that our bodies, like wells, need
  to be replenished in order to keep giving.

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Self Care Tips

• Keep a commitment to take care of yourself.
• If possible, arrange to have respite care or
  family and friends who can sit with the care
  receiver while you get away.
• Adjust the time you perform your activity. Daily
  routines are often changed by caregiving needs.
• Adjust the location of your activity. Before you
  give up your lunch with friends, think about
  having your friends bring lunch to your home.
• If possible, arrange to have someone sit with
  your friend or family member while you receive
  the support you need to continue caring.

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Self Care Tips, 2

• A quick walk around the block will help you
  mentally and provides exercise.
• Keep Familiar Activities. This may not be the
  best time in your life to learn a new self-care
  activity.
• Plan activities that are doable now but make a
  list of the things that you would like to do
  later.
• Keep it Simple. The more complex the activity,
  the less achievable it may be.

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List of Activities
Create your Sacred Space This could be a room, a
table of things or a chair near a window. Create
your space.
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After Death Has Occurred - Final Details

• The death of a loved one is a very difficult
  experience.
• Yet during this period of grief you may be called
  upon to make many important decisions.
• There are many papers you will need, and steps
  that must be taken.
• Here's a list of the basic actions you will need
  to take after the death of your loved one.

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After Death Has Occurred Calls to Make

• Calls to make as soon as possible
• Coroner or justice of the peace through the local
  police if your care receiver has died at home, so
  that he/she may "pronounce" death. 
• Family and friends.
• Funeral home.
• Minister, priest, rabbi, or other spiritual
  advisor.

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Calls to Make

• Call within a few days of the death
• Attorney (if applicable).
• Insurance agents.
• Unions and fraternal organizations.
• Accountant.
• Executor of the estate.
• Government offices, including Social Security
  (1-800-772-1213),Internal Revenue Service
  (1-800-829-1040) and Veterans Administration
  (1-800-827-1000). 

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After Death Has Occurred - Documents

• Collect the necessary papers so you can file for
  various benefits and take care of other financial
  matters.
• Contact insurance companies.
• In addition to life insurance, check to see if
  other forms of insurance covered the deceased.
• Some loans, mortgages, and credit card accounts
  are covered by credit life insurance, which pays
  off account balances.
• Contact each insurance company about how to claim
  the policy benefits.
• If you can't find the individual policies among
  the deceased's papers, check the checkbook or
  paycheck stubs for premiums paid.

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After Death Has Occurred - Documents, 2

• Notify Social Security.
• You will need to notify the Social Security
  Administration if the deceased was already
  receiving Social Security.
• When applying for survivor's benefits, you will
  need to have birth, death, and marriage
  certificates, Social Security numbers, and a copy
  of the deceased's most recent federal income tax
  return. 
• Claim benefits. Veterans, Social Security, and
  employee benefits may be available. Unions and
  other professional organizations provide benefits
  as well. 
• Begin probate. Probate is the court-supervised
  process of paying the deceased's debts and
  distributing the estate to the rightful
  beneficiaries.

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After Death Has Occurred Legal Issues

• If the deceased did not have a will, state law
  will determine how the deceased's assets and
  property will be distributed to family members.
• The court will appoint a personal representative
  or the person named in the will as executor to
  manage the deceased's affairs.
• Contact the probate court in the state where the
  deceased lived for details.

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The Caregiver and Grief

• Grief is the natural process that follows upon
  death. Although everyone is different, common
  experiences include -
• Reacts emotionally, but within character, to the
  loss (sadness, despair, depression)
• Reviews the relationship with the deceased (what
  did this person mean to me, do for me, and how
  will I manage without him/her)
• Emotional outbursts at the unfairness of it
• May seek replacement figures (searches for people
  who will take over or fill in for the deceased)
• Revises current relationships
• Revises and reshapes his or her personal identity
  
• Eventually most people re-enter the community as
  a fully participating member

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Resources For Caregivers

• Call
• 2-1-1 throughout Texas. Provides information and
  access to health and human service information
  for all ages
• 1-800-252-9240 to find local Texas Area Agency on
  Aging
• 1-800-677-1116 - Elder Care Locator to find help
  throughout the United States
• Online
• Family Caregivers Online www.familycaregiversonlin
  e.net
• Online education, resources, links, frequently
  asked questions
• Benefits Check-up www.benefitscheckup.org for an
  online way to determine benefits for which
  someone qualifies.
• To schedule a caregiver presentation for your
  church, business, library, civic group, or other
  location, call your local area agency on aging or
  send an email from www.familycaregiversonline.net

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What Assistance is Available Through the Area
Agency on Aging (AAA)?

• Services for persons age 60 and older
• Benefits counseling
• Ombudsman - advocacy for those who live in
  nursing homes and assisted living facilities
• Home delivered meals
• Congregate meals
• Light housekeeping

• Caregiver Services
• Information and referral
• Caregiver education and training
• Caregiver respite
• Caregiver support coordination
• Case management
• Transportation assistance

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Family Caregiver Education

1. Elder Caregiver Basics
2. Behavior and Emotions of Aging
3. Chronic Illness, Medication Management and
   Communicating with
   Health Care Providers
4. Sensory Loss
5. Communication and Relationships
6. Safety and Independence
7. Legal Issues and Financial Planning
8. Community and Internet Resources
9. Caring for the Caregiver
10. Long Distance Caregiving
11. Housing Options and Long Term Care
12. End of Life Issues
13. Loss and Grief
14. Sandwich Generation
15. Nutrition, Kitchen Safety Preparing
    Meals for Elder Care Receiver
16. Aging Mental Health Depression,
    Alcohol and Prescription Drugs
17. Safe caregiving
18. Communicating with Health Care Professionals

Libraries, churches, civic groups, and other
venues Internet familycaregiversonline.net At
Work Brown bag or lunch and learn Manager
training Management consulting Electronic
Newsletters
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• Written by Romie Myers, R.N., and Zanda Hilger,
  M. Ed., LPC, Family Caregiver Education, Area
  Agency on Aging, Revised by Zanda Hilger and
  Betty Purkey September 2009
• Permission is granted to duplicate any and all
  parts of this program to use in education
  programs supporting family members caring for
  elders.
• This program is one module of a comprehensive
  caregiver education program.
• Go to www.familycaregiversonline.net for more
  information about this and
• Other training programs
• Internet links
• Frequently asked caregiver questions
• Legal forms
• Phone numbers
• Fact sheets
• And more

Funded by local area agencies on aging with
federal funds through the Texas Department on
Aging and Disability Services