Hospice and Palliative Care: Planning
When a patient is diagnosed as being terminally ill, it means the illness cannot 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 impending death while others are not. Likewise, family and friends may be more open or less open to talking about these issues. Talking with health care 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 patients might consider:
Where do I want to die? At home, in a hospital, or hospice?
Should my death be delayed? If so, for how long? Under what circumstances?
How do I want to die? Alone or with family?
What do I want/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 ethical issues arise. This can be a hard topic for the family and caregivers to talk about. They should listen to the patient and help him or her sort through these issues.
How shall I live before I die?
When a person knows death is approaching, he or she may search for the meaning of his or her life, illness, and impending death. This is a difficult journey that may lead the patient down many different paths.
Once the patient 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:
Spiritual and ethical decisions
When confronted with death, many people tend to 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 four ways in which people can find meaning in their lives:
Leaving a legacy -- People who are approaching 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.
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.
Prayer, meditation, and journal writing -- Whether it is done verbally, in a journal, or through meditation, prayer is very helpful in allowing people to review their lives and find out who they are. When people are dying, they often use prayer to help them cope, ease their pain, and to 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.
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 anti-smoking campaigns, cancer research funding, cancer support activities, and writing about the experience of cancer.
An important part of palliative care is making sure the patient's wishes are addressed. When a person is terminally ill, legal and ethical issues may arise, such as making advance directives/living wills, and deciding about the use of life support and to not resuscitate. The Patient Self-Determination Act of 1991 states that patients may state their last wishes (or advance directives) in writing. Advance directives have also been called ‘Living Wills.' These documents become important when patients are not able to make or express their own wishes regarding their care. In a living will, a patient describes what type of life-sustaining measures can or cannot be used for his or her care. Another option is to name a person who is responsible to make these decisions when the patient cannot through a power of attorney for health care. The hospice team or other health care providers can discuss advance directives with patients and their families.