"I expect to pass through this world but once. Any good therefore that I can do, or any kindness or abilities that I can show any fellow creature, let me do it now. Let me not defer or neglect it, for I shall not pass this way again."
William Penn
Navigation- Previous | Table of Contents | Next
Preparing for the End of Life
Every Kansan needs to think about and plan for the kind of care you would like to receive at the end of life. It is important for families to think and talk about these choices before a crisis occurs. This process of thinking, planning and talking is called advance care planning.
Principles of Advance Care Planning
There are many choices about when, where, and how a person will die. These choices are the result of dramatic changes in medical science and technology. The choices are complex and stressful for those who must make them. Frequently, the person with dementia is no longer able to choose and someone else must step in.
Most people die in hospitals or nursing homes. Very often, death is a result of a decision to stop or not to start a treatment or procedure. Usually, family members and friends work with doctors and nurses to decide what is best for the patient. In the past we believed that all efforts to prolong life and restore function were good. Today, it is sometimes hard to know whether we are prolonging life or just making the dying last longer. The decisions are important and sometimes very difficult, especially when not everyone involved can agree.
Advance care planning is a communication process through which we engage our family and friends, physicians, clergy and others in planning for future health care needs. The process involves thinking and talking about goals, values, religious preferences and comfort issues with people who are important to us. Alzheimer's disease is a terminal illness and it is important to discuss these issues early in the disease process so the person has an opportunity to share their personal wishes. Advanced care planning is a good idea for people of all ages.
(This information is used with permission from the LIFE Project. The Kansas LIFE Project Principles of Pain Management, Advance Care Planning, and Palliative Care may be viewed at their website www.LIFEProject.org.)
Hospice Care
Hospice is a special way of caring for a person who is terminally ill, and for their family. This care is given by a public agency or private company approved by Medicare.
If a person qualifies for hospice care, they can get medical and support services, including nursing care, social services, physician services, counseling, homemaker services, and other types of services. A team of physicians, nurses, home health aides, social workers, counselors and trained volunteers are available to help the dying person and their family cope with the illness. Depending on the person's medical condition hospice care can be provided in the home, a hospice facility, hospital or nursing home.
The care that the hospice provides is for comfort and relief from pain. The focus is on care, not cure.
The Autopsy Decision
Although a diagnosis of Alzheimer's Disease has become more accurate, a brain biopsy remains the only way to confirm that an individual suffered from this disease.
The decision to have an autopsy performed can be a difficult one and should be discussed with family members and the physician. A brain autopsy may require special arrangments and the decision needs to be made before the person's death.
The information gained from a brain biopsy gives families peace of mind and contributes to research studies. For more information contact your local Alzheimer's Association.
Navigation- Previous | Table of Contents | Next