Healthcare Decisions

Healthcare Decisions for the Dementia Caregiver

End-of-life healthcare decisions for persons with dementia present some unique choices for families and for persons with early stage dementia who are still able to direct their own care. Ideally, people should state their end-of-life healthcare wishes long before they lose their decision-making ability. These expressed wishes would then guide the care of persons with advanced dementia, who are among the most vulnerable in society.

Dementia can last up to 20 years, which presents an opportunity to consider choices early, relieving a considerable amount of stress later for the family. If the person does not have advance directives, Arizona law allows "surrogate" or default decision makers to make most health care decisions. (Surrogate decision-makers can include a spouse, adult child, sibling, domestic partner and others.) Surrogates are responsible for serving as a substitute decision-maker for the person and making decisions that are consistent with what they believe the person would want. If the person is unable to make decisions, only a Medical Power of Attorney or court-appointed Guardian can decide to stop feeding tubes, unless there is a medical reason to do so.

Hospice of the Valley also has created a separate program designed to educate caregivers, families and the community about advance directives, which allow an individual to make clear in writing what type of treatment and health care they want in certain situations. The Health Care Decisions site provides a great deal of information, and has free forms that can be downloaded. Please visit the site by clicking on the link above.

Common health care decisions that people with dementia and their decision-makers face include the use of:

  • Cardiopulmonary resuscitation (CPR) - efforts to maintain heart and breathing functions, including respirators and ventilators. These may be painful, cause injury and be unsuccessful. Extending life by life-supporting devices carries the potential for substantially reduced quality of life.
  • Artificial nutrition - becomes a consideration as weight loss occurs with eating and swallowing difficulties that accompany advanced dementia. Careful feeding programs are alternatives. There is little evidence that artificial nutrition through feeding tubes through the nose or inserted surgically into the stomach extend life, prevent infections or improve comfort. Some studies have shown higher rates of aspiration pneumonia, diarrhea and the need for physical restraints.
  • Hospitalization - may present a serious challenge to the person with dementia because hospitals lack calmness and familiarity. Persons with dementia almost always become more confused and agitated (delirious) when hospitalized, and require restraints. Alternatives include delivery of services in a long-term care setting or at home.
  • Intravenous (IV) hydration - may provide temporary fluid replacement but it cannot maintain nutrition and may decrease comfort. In the absence of nutrition and hydration, the body develops endorphins to blunt nerve endings. Research indicates that it is generally more comfortable to die without artificial (intravenous or IV) fluids, since the lungs, abdomen, and bladder are less likely to fill with fluids and cause difficulty breathing and increased discomfort.
  • Antibiotics - may or may not improve infections common to advanced dementia. Pneumonia -- caused by difficulty swallowing when saliva and bacteria go down to the lungs instead of to the stomach -- is the most common cause of death in dementia. Urinary tract infections also are common. Most of us say that we would not want our lives prolonged with medical means when we have advanced dementia. Instead we would like to be kept comfortable. When antibiotic use is not the wish of the person with dementia, other comfort measures, such as pain medications, can effectively manage the symptoms of infection.