For an individual with Alzheimer’s disease, advance planning is essential to fulfilling end-of-life wishes. Physicians and other members of the health care team play an important role in initiating discussion with the individual and family regarding these wishes.
Early discussion, when the individual’s cognitive and communication abilities are least impaired, will help to clarify the individual’s wishes. A person with Alzheimer’s may lack capacities to drive, handle financial affairs or live independently but still may have the capacity to make independent decisions about his or her medical care or place of residence.
Advance directives
- Individuals have a moral and legal right to limit or forgo medical or life-sustaining treatment (including the use of artificial feeding, mechanical ventilators, cardiopulmonary resuscitation, antibiotics, dialysis and other invasive technologies).
- Individuals who lack decision-making capacity have the right to have surrogates use advance directives to assure their right to limit or forgo medical or life-sustaining treatment.
- The two common forms of advance directives are a living will and a durable power of attorney for health care.
A living will states the individual’s choices for future medical care decisions. The durable power of attorney allows the individual to designate a surrogate, usually a trusted family member, to make specific treatment decisions for them. The surrogate should make decisions consistent with what they think the individual’s wishes would have been.
Every state now legislatively recognizes advance directives. Both the living will and durable power of attorney for health care are authorized in most states and the District of Columbia. However, issues within the statutes regarding the use or withdrawal of artificial nutrition and hydration vary from state to state.
Treatment withdrawal/refusal
The Alzheimer’s Association Ethics Advisory Committee concluded that all efforts at life extension in the advanced stage of Alzheimer’s creates burdens and avoidable suffering for patients who could otherwise live out the remainder of their lives in greater comfort and peace.
- Cardiopulmonary resuscitation, dialysis, tube feeding, and all other invasive technologies should be avoided.
- The use of antibiotics usually does not prolong survival, and comfort can be maintained without antibiotic use for patients experiencing infections.
- Care providers should work closely with the family or the proxy decision maker in cases where a substitute judgment must be made to interpret advance directives.
- If necessary, the importance of respecting the individual’s wishes should be clarified for the family.
- Clinical ethics consultants or an ethics committee may offer assistance in facilitating consensus.
Pain recognition and intervention
- Pain is often difficult to evaluate in individuals who are unable to use words to express their needs. Signs that the person may be in pain are moaning, rocking, crying, resistance to care, refusal to eat, social withdrawal, motor restlessness or sleeping.
- It is important to assess the person’s need for comfort measures including pain medication, since many persons with Alzheimer’s disease may be unable to verbally communicate their discomfort.
Hospice care
During the final stages of Alzheimer’s disease, hospice care can be particularly beneficial to individuals with Alzheimer’s disease and their family members. Hospice, which is normally offered to individuals who are expected to live less than six months, includes comprehensive palliative care and support services, including bereavement counseling for family members.
Despite the appropriateness and benefit for persons with advanced Alzheimer’s disease and their families, and their eligibility for the Medicare hospice benefit, very few receive hospice care. Physicians, care professionals and families can change this by generating awareness of the importance of hospice to the individual in the final stages of Alzheimer’s disease.
If an individual’s end-of-life wishes conflict with the care provider’s personal beliefs, consideration should be given to the transfer of care to another provider.
Dementia Care Practice Recommendations Phase 3: End of Life Care (28 pages)
