How can you ensure the best possible death for a loved one?
People who are affected by Alzheimer's Disease usually die from complications of the disease, such as pneumonia. When death approaches there are sometimes difficult choices to be made regarding possible life-prolonging treatments. For sufferers of Alzheimer's Disease, these are usually made by a substitute decision maker. End-of-life care choices may include the use, limitation, withdrawal or refusal of procedures, treatments or technology which may prolong life (for example, mechanical respirators or ventilators, cardiopulmonary resuscitation (CPR), surgery or even the use of antibiotics). How should such decisions be made?

The loved one's wishes should be the primary concern.
In the transition from life to death, the ultimate goal of care should be to provide comfort and dignity to the person, towards achieving what the person considers a good death. What defines a good death differs from person to person. In planning a good death, people should take into consideration their cultural, religious, spiritual and family values. Their past experiences with death may also be a value to consider. Respect for the person's expressed wishes and interests should, where possible, guide all end-of-life care decisions.

Where direction is very clear, care decisions can be guided by the person's wishes. If unknown, decisions may be guided by a palliative care philosophy of providing comfort and dignity to the person in the context of continuing to give care. Decision makers should endeavour to be guided by the known values and preferences of the person, even if not recorded in a formal manner. However, sometimes disagreement may arise amongst family members or between family and health-care professionals and outside arbitration may be required. Conflicts and disagreements can best be avoided or resolved through early and continuing communication.

Talking beforehand is important.
For this to happen, it is important that individuals are encouraged to indicate choices and preferences before they become an issue. People should be encouraged to discuss their choices with their family members, and to nominate their substitute decision maker(s) while able to make decisions regarding end-of-life care choices. Most people are not comfortable discussing personal values in relation to dying. However, silence on these issues can result in many individuals, including those with Alzheimer's Disease, being denied the opportunity to express and realise their wishes about their own care. Outside assistance may be useful. Health-care professionals should be skilled in helping families discuss these issues openly in order to allow those they love a good death.

Family members and future decision makers should be aware of the person's values and preferences regarding future types of care, including life-prolonging treatments and what the person considers a good death. This is true for all individuals, not just those diagnosed with Alzheimer's Disease. It may be an idea for all family members to put themselves through the same process. If such discussions have not occurred before a person is diagnosed with Alzheimer's Disease, they should be encouraged as soon as possible after diagnosis, if this is possible.

Advanced directives are important.
The person's wishes should be recorded in an advance directive - a legally recognised document that communicates a person's wishes about the type of care desired, should the person be incapable of making that choice in the future. It may also indicate who will be the designated or substitute decision maker(s) when the person is no longer able to make decisions. Such documents have different names in different parts of the world. Living will, or enduring or durable power of attorney for health care are other descriptions. In some places (Australia for one), official forms are available readily and for little or no cost. These outline a series of specific questions relating to specific sets of circumstances which could arise in the future. The person is asked to indicate their preference should such circumstances arise at a time when they were incapable of indicating their choice.

It is important to ensure that the wording of such documents is clear and specific. It is important to discuss preferences with those family members, friends and/or others who might be involved in future care. It is especially important to discuss them with any nominated substitute decision maker(s). To ensure that the preferences expressed in such a document will be heeded, it is vital that family members and health-care professionals should be made aware of the contents of the directive. It is helpful to make photocopies for all involved. It is also helpful to discuss options with those who have experience with all the stages of Alzheimer's Disease.