Hospice and Palliative Care: Planning

When a person is diagnosed as being terminally ill, it means the illness can’t be cured and he or she is going to die of their illness. Death is not a subject that many people like to talk about. When diagnosed with a terminal illness, some people are able and willing to talk about their coming death. But other people are not. Family and friends may also be more open or less open to talking about these issues. Talking with healthcare providers and spiritual leaders can help.

How shall I die?

Many terminally ill people have trouble thinking about how they would like to die. There are many confusing, unexpected, and unwanted choices that need to be made. Here are a few things dying people might consider:

• Where do I want to die? At home, in a hospital, or at a hospice facility?

• How do I want to die? Alone or with family?

• What do I want or need to do before I die?

There are no right or wrong answers to these questions. When people begin to think about their own or their loved one's death, many spiritual and emotional issues arise. This can be a hard topic for the family and caregivers to talk about. They should listen and help sort through these issues.

How shall I live before I die?

When a person knows death is near, he or she may search for the meaning of his or her life, illness, and coming death. This is a difficult journey that may lead the person down many different paths.

Once the person has come to some sort of terms with illness and death, he or she might then consider relationships with family and friends. Often when people are dying they become closer with their loved ones and want to spend more time with them. Here are a few ideas that may help terminally ill people during these times:

• Praying for others

• Listening to family and friends

• Sharing wisdom

• Writing a poem or a family history

• Being involved as much as they can in things that are satisfying to them

Spiritual and ethical decisions

When confronted with death, many people wonder how they will be remembered. There are many ways for people to create a sense of meaning for themselves before they die. Here are 4 ways people can find meaning in their lives:

1. Leaving a legacy. People who are coming close to death find that leaving a legacy provides comfort and meaning to their lives. Ways of leaving a legacy can include writing or making a tape of the family history, dedication to a cause, or creating a family heirloom.

2. Storytelling. Remembering and sharing life stories can help people to make meaning of their past, present, and future. Storytelling can also bring families closer together and help people build stronger connections with their loved ones.

3. Prayer, meditation, and journal writing.Prayer is very helpful in allowing people to review their lives and find out who they are. It can be done verbally, in a journal, or through meditation. When people are dying, they often use prayer to help them cope, ease pain, and relieve stress during treatments and surgeries. Prayer also gives people a sense of hope when they feel that there is nothing to hope for. When some people are very close to death, they feel that praying for their loved ones helps them feel better about leaving them.

4. Dedication to a mission or cause. This can create a sense of self-worth and purpose. Some people believe that it helps them to see life differently. A few types of missions or causes are antismoking campaigns, cancer research funding, cancer support activities, and writing about the experience of cancer.

Advance directives

An important part of palliative care is making sure the person’s wishes at the end of life are addressed. When a person is terminally ill, legal and ethical issues may arise, such as making advance directives, and deciding about the use of life support and resuscitation efforts. The Patient Self-Determination Act of 1991 states that patients may state their last wishes (or advance directives) in writing. One form of advance directive is a living will. This document becomes important when people are not able to make or express their own wishes regarding their care. In a living will, a person describes what type of life-sustaining measures can or can’t be used for their care. Another option is to name a person who is responsible to make these decisions when the person can’t. This is done through a power of attorney for health care. The hospice team or other healthcare providers can discuss advance directives with people and their families.