End of Life Issues

Learning Objectives

After completing this module, you will be able to:

• Understand palliative & hospice care
• Describe emotional issues related to the death of a loved one
• Identify practical issues related to the dying & death of a loved one
• 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

Index/Content of this Module  

In this module you will contemplate the meaning of death. Gain knowledge of palliative & hospice care, identify emotional issues related to the death of a loved one, identify practical issues related to the dying & death of a loved one. Learn 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.

1. Death and Dying

2. Talking About Death

3. Common Experience of Caregivers at the End of Life

4. Hospice and Palliative Care

5. Practical Issues

6. Funeral Planning

7. Dying “timetable“ (signs that death is close or imminent)

8. Taking Care of Yourself When Caring for a Terminally Ill Person

9. After Death has Occurred

10. The Caregiver and Grief

11. Resources


Death and 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.

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 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.

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.  Denial – avoiding an honest acknowledgement of death – can create unnecessary pressures and do much to harm close relationships and impact caregiving.  Speaking honestly about death takes courage, but it brings with it many benefits.

Here are some emotional/spiritual topics that need to be discussed:

• 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?
• Reassure the care receiver that he/she will not die alone or in great pain.
• This is the ideal opportunity for the caregiver to say, “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.

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
• 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 

Although we know that someday our loved one will die, we tend to ignore the possibility.  As we face the reality that our loved one is dying, our priorities may shift – life’s details can fade to the background, and we may find ourselves looking at deeper meanings.   Past conflicts pale in importance, and the desire to resolve difficulties in relationships often becomes a priority.

Grief generally starts before the patient actually dies.  Impending death represents, to many, an opportunity to evaluate one’s life. People often contemplate their accomplishments and acknowledge their shortcomings and regrets.

Hospice/ Palliative Care

Palliative care, also called “comfort care,” is primarily meant to provide relief to a terminally-ill person by managing symptoms and pain. The 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 is well-suited to an interdisciplinary team model that provides support for the whole person and those who are sharing the person`s journey in love.

Palliative care may be delivered in hospice and home care settings or in hospitals.

Hospice is a model of care that was developed to provide palliative care for the dying. It created the standard for good palliative care through its recognition that the needs of the dying are different from those who expect to recover. Hospice also acknowledges that caring for those who love and take care of the patient is a part of caring for the patient.

Too few know about hospice or take advantage of what it can offer to dying patients and their loved ones. 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.”

Talking About Death – Things to Discuss

Reassure the care receiver that he/she will not die alone or in great pain. You could say something like, “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.

Practical Issues 

There are a number of practical issues that should be discussed prior to death.  Some of these include:

•  What clothes, and accessories does he/she want to be wearing for the funeral, cremation, whatever?
•  Where are the official papers, such as the will, the medical power of attorney, 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.
•  Where is the safe deposit box key? For that matter, where is the box itself?
•  What does he/she want to have happen in terms of medical intervention (or lack thereof) 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? Don’t forget, some can be really nasty, like estimated income taxes. If it’s difficult for the caregiver, it’s probably way too much for the care receiver.
• Would he/she like to donate his/her corneas, heart, lungs, to science or for transplant? Timing is extremely important for things like this.

Consider this “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.
• 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 are available from the Legal Resources portion of this website.

Funeral Planning 

Funeral planning is an important part of preparing for a death.  Funerals and burials are among the most expensive purchases we make.

• In 2009, the average cost of a funeral was $6,500 excluding burial expenses • Burial costs are an additional $2,000 or more.
• Wooden or metal caskets featured in funeral home can cost $3000 or $4000 ($1500+ caskets are usually available on request)
• Flowers, obituary notices, acknowledgment cards, burial liners or vaults, and special transportation can add an additional $1,000.
• Funeral and burial costs combined can easily reach as much as $10,000.

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.

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.

Dying “Timetable“ (signs that death is approaching)

As a person approaches the dying process, a natural slowing down of the body’s 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.

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.

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.
· 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.

Days or hours:
· Intensification of above signs.
· Surge of energy.
· Decrease 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.

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.

Taking Care of Yourself When Caring for a Terminally Ill Person 

The caregiver’s well-being is the foundation of caregiving. 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.

Simply put, 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.

· Adjust the time you perform your activity. Daily routines are often changed by caregiving needs. It may be time to select a new time and day to do your favorite activity.

· 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.

· Adjust length of your activity. A quick walk around the block will never replace the long walks you once enjoyed. However, that quick walk can help you meet your caregiving challenges.

· Keep Familiar Activities. This may not be the best time in your life to learn a new self-care activity. Think about things you did in the past that you enjoyed and do those things.

· Keep Your Commitment to Yourself. Plan to take care of yourself. Make the necessary arrangements needed or plan the activity at a convenient time.

· Keep it Real. There may be several activities that will never work in your caregiving situation. Plan activities that will work for you.

· Keep it Simple. The more complex the activity, the less achievable it may be. Below you will find a list of simple activities that other caregivers have found helpful. Many can be performed alone or shared with the friend or family member you are caring for.

· Create your Sacred Space: This could be a room, a table of things or a chair near a window. Create your space.

Caregiving can be very demanding at times. But caring for a friend or family member can also be one of life’s most rewarding experiences. Time is needed to experience the reward and prepare to care again. A wise person once said, “you can’t draw water from a empty well.”  This saying is true when applied to caregiving. 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. Take time to keep your well filled.

See the following links for further information on caring for yourself in your role as a caregiver:  Caring for the caregiver

After Death has Occurred

Final Details

The death of a loved one is a very difficult experience. Yet during this period of grief and emotional readjustments, 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.

Calls to make:
· Contact the 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.
· Funeral home.
· Minister, priest, rabbi, or other spiritual advisor.
· Insurance agents.
· Unions and fraternal organizations.
· Attorney (if applicable).
· Accountant.
· Executor of the estate.
· Government offices, including Social Security (1-800-772-1213) and Internal Revenue Service (1-800-829-1040).
· Pensions plans.
· Veterans Administration (1-800-827-1000).
· Bank, investment companies, mortgage companies.
· Contact an attorney to inquire about changing the title on all real estate property. If applicable, application for widowed person exemption as well as homestead and disability exemptions may be completed.

View/Print checklist of papers you may need. [Microsoft Word format, link opens in a new window]

Click here to download a free Word document Viewer from Microsoft.com.

Collect the necessary papers: Before you can file for various benefits and take care of other financial matters, you will need to collect a variety of documents.

· 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. Generally, life insurance proceeds are paid directly to the named beneficiary. Most companies offer to pay the benefits in a lump sum or as fixed payments over time.

· 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. Jointly owned property, property in trust, and assets with a designated beneficiary (life insurance, 401(k), pensions) do not go through the probate process.

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.

The Caregiver and Grief

As the body requires time to heal from a physical injury, one’s emotional life needs time to recover from loss. Grief is the natural process that follows upon death.

Although everyone is different, common experiences include (Dr. Barry Greenwald, University of Illinois at Chicago):
• 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 (usually by displacing anger onto others, eventually facing the anger at the person who died)
• May seek replacement figures (searches for people who will take over or fill in for the deceased)
• Revises current relationships (e.g., becoming single in a community of couples)
• Revises and reshapes his or her personal identity (one is changed by death and it takes time to figure out who you have become)
• Eventually most people re-enter the community as a fully participating member

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

Online
• Benefits Check-up 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 organization – Contact Zanda Hilger, (817) 581-5890 or send us an email
What Assistance is Available Through the Area Agency on Aging (AAA)?
• Caregiver Services
• Information and referral
• Caregiver education and training
• Caregiver respite
• Caregiver support coordination
• Case management
• Transportation assistance
• 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

Note that services vary so check with the agency for your county.


Sources
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.