- Family Caregivers Online - https://familycaregiversonline.net -

End of Life Planning

End of Life Planning

End of Life Planning is a multi-faceted issue including legal, emotional and practical steps to consider. While it may not be easy to think or talk about dying with your loved ones it can bring peace of mind and decrease stress for everyone involved when you are knowledgeable on the subject. In this education module we review the major aspects of end-of-life-planning, end-of-life care terminology, and what to expect. 

What you will learn in this education module:

Topic Quick Links – Click on a topic below to go to that area of the page.

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. Today death 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; and 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:

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.

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 often presents an opportunity to evaluate one’s life. People often contemplate their accomplishments and acknowledge their shortcomings and regrets.

Hospice/Palliative Care

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

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. 

Practical Issues 

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

Consider this “to-do” list in preparation for death:

Advance directives include:

To find an elder law attorney, who specializes in probate law, go to National Elder Law Attorney Academy [13].  Your local area agency on agency can also help you fine a qualified attorney.

Funeral Planning

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

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 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:

One to two weeks:

Days or hours:


Usually the more symptoms the care receiver experiences, the closer the person 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 the care receiver’s needs as well as to your own. 

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 an 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 yourself well filled.

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.

Visit our FAQ page for more information on caregiving [14].

After Death has Occurred – checklist

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 is a list of the basic actions you will need to take after the death of your loved one.

Calls to make:

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.

Here are two more checklists:

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:

Resources for Caregivers

Use resources such as Area Agency on Aging [17] (AAA). Types of assistance provided by AAAs:

Assistance available through AAAs for persons age 60 and older may include:

Be sure to check out our Resource Directory [18]FAQ [14], and Educational Events Calendar [19] for more great information! Permission is granted to duplicate any and all parts of this page to use in education programs supporting family members caring for elders. 

Revised 2021

We hope this information is helpful to you in the important work you do as a family caregiver.
For more resources, subscribe to our free eNewsletter!