Palliative care is a treatment meant to control pain and other forms of discomfort. Rather than focusing on a cure or prolonging life, palliative care emphasizes quality of life and dignity by keeping the person comfortable and pain-free until life ends naturally. Dr. Morrison and Dr. Siu of Mount Sinai concluded in their study published on July 5, 2000 that in many cases the best treatment for people in the late stage of Alzheimer's may be to maximize pain control and minimize repeated blood tests and the insertion of intravenous lines and urinary catheters which are painful and frightening to people with dementia. He said, "Some patients with severe dementia may even be better off without surgery to repair a broken hip." Hospice programs provide palliative care to individuals in the final stages of terminal illness and support services to the family.
Hospice care focuses on the comfort and dignify of the person with the disease. It can be provided in the home, hospitals and residential care facilities. A hospice team includes nurses, physicians, social workers, trained volunteers, dieticians and clergy. They work together to address the physical, emotional, and spiritual care needs of the person and his or her family.
To qualify for Medicare to cover hospice care, a person with Alzheimer's must be assessed by a physician as having six months or less to live.
Making Informed Decisions
Consider the following when making end-of-life decisions about the care of the person with Alzheimer's.
Focus on the person's wishes
Compare any recommended medical treatments or actions against the person's wishes for care or what you believe the person would have wanted. For example, did the person want all available treatment measures or only specific ones? Did the person want medication to ease pain but not fight infection?
Reflect on the person's values and beliefs
Cultural, religious, spiritual, and family values and beliefs often influence people's decisions to use medical treatments or their definitions of quality of life and death. Let the values and beliefs of the person with Alzheimer's guide your decision-making. Distinguish your values and beliefs from those of the person with Alzheimer's – they may not be the same.
Weigh the burdens and benefits of treatments
Talk with the medical care team about the burdens and benefits of using or refusing care treatments. Find out if the treatment will improve the person's condition or comfort and for how long, and if it will pose excessive physical or psychological burdens. Compare any recommended treatments with the person's wishes for end-of-life care.
Make each decision separately
Advances in medicine and technology have made it possible to extend, and in some cases, improve a person's life. However, certain treatments may also lengthen the dying process and cause more complications and pain. You may agree to use a treatment for a limited time to see if it benefits the person.
Ask the physician questions about medical care treatments:
- What are they for?
- How will they benefit the person?
- What are the risks, burdens and discomforts?
- Do they match the person's preferences?
- Do they maximize the dignity and quality of his or her remaining life?
- Is the person in pain, and what can be done to ease it?
- When should hospice care be requested?
- Consider the location of care
Find out what treatments can be provided in familiar surroundings and what type of care may require a transfer to another setting, such as a hospital. In general, the temporary transfer to a hospital for tube placement or other interventions is disorienting and may be harmful to the person with dementia. Discuss with the care team if moving a person to a different setting is in his or her best interest.
Do not equate the refusal or withdrawal of treatment as assisted suicide
Treatment limitations allow for a natural course of the disease and promote the person's comfort and dignity. If treatment is refused or withdrawn, the person will continue to receive good care.
Resolving Family Conflicts
Family members need ongoing discussion when making decisions on behalf of the person with Alzheimer's. Some members may disagree about a recommended treatment and get angry or defensive. Or, they may refuse to engage in discussion because they feel the family is "planning for death". Here are some suggestions
Involve a third party
The physician, nurse, social worker, hospital ethics committee member or spiritual leader can be called on to facilitate family meetings and help members work through difficult issues.
Listen to each family member with respect
Family members may have different opinions of the person's end-of-life preferences and quality of life. Or, they may be at different levels of acceptance about the approaching death of the person with Alzheimer's. Talking about these perspectives may surface intense emotions, but this is not the time for blaming or attacking others. Each person deserves to be heard and treated with respect.
Come to agreement
Talk to the physician about the person's condition, prognosis, and care options, including the burdens and benefits of specific treatments. With the help of a third party, a family can find common ground and agree on decisions that are in the best interest of the person.
Requesting a brain autopsy
Brain autopsy is still the only way to confirm that an individual had Alzheimer's disease or another type of dementia. Brain autopsy for Alzheimer's may require special arrangements, and the decision to have one should be made before the person's death. Contact us to find out more.
Coping with Feelings
Caregivers and their families may want to seek emotional support, particularly during this last, difficult stage of the disease. Call our Helpline to talk with a dementia care specialist: 844.HELP.ALZ (844.435.7259).