Death and medical conditions are things that most people don't want to deal with. Ignoring them will not prevent them from happening, but it can lead to problems when determining how your loved ones will have to handle the issues. One area that many people fail to address, is completing an advance directive for medical care.
What is an advance directive?
An advance directive will allow you to assign someone you trust to make medical decisions on your behalf if you are unable to do so. Unfortunately, two-thirds of American adults will leave their medical decisions in the hands of medical professionals and family members who may not understand how they wish their medical care to proceed or whether to prolong life at all.
Even if you have an advanced directive in place, it might need to be revisited, as many do not include a scenario for dementia, a leading cause of death in the U.S. Even if you have completed all of the standard documents, you will find they do not cover every life-sustaining issue such as being fed and hydrated through feeding tubes.
Dementia prevalence in the U.S.
Advanced dementia, including Alzheimer's disease, is listed as the sixth overall cause of death in the United States. It is fifth for those over the age of 65 and makes it to the top three from those 85 and older. Once it gets to the point where death is approaching, you will likely be unable to communicate your specific desires either for or against life-prolonging therapies. Some of these therapies can actually hasten death and sometimes cause additional pain.
Why leaving care decisions to family members is not always the best option
When your family is left to make medical decisions without knowing your expressed wishes, it can lead to a lot of in-fighting, hurt feelings, and even legal battles. Some family members will want to keep you alive as long as possible so that they can push off losing you and the postpone grieving process. Others may feel that prolonging your life means needless suffering and wish to withhold any life-prolonging measures once a terminal diagnosis is made. By the time this conversation occurs, you will not likely have the capacity to speak up for yourself.
Things to do to ensure your wishes are carried out
There are many companies such as End of Life Choices New York that are trying to create an advanced directive to include dementia and the life-prolonging measures that can be requested and denied for treatment of the condition. People need to educate themselves on the process that occurs with advanced dementia and the treatments and care that can be expected along the way. Even simple things like being spoon fed can be doing the opposite of what is needed as at some stage of dementia, you lose the ability to swallow properly. What may be considered to be a compassionate act from the outside, could be considered painful and uncomfortable to one of the receiving end. It is crucial to learn what to expect and make those decisions while you still retain the decision-making capacity to do so. When you are ready to make your decisions:
- Choose a loved one who will respect and carry out your wishes to be in charge.
- Get all of your wants and expectations in writing.
- Meet with an attorney so that your advanced directive can get on file and you can ensure that all the proper forms are filled out.
- Discuss your wishes with your loved ones.
The last part can be uncomfortable but it is essential. Your loved ones should know what you want and who you have authorized to carry out those wishes. Even if you have an advanced directive in place, discuss with an attorney your options for including life-prolonging measure typically used with the diagnosis of terminal dementia.