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Since its inception, the Network has had a policy of working with those who have terminal and also incurable, progressive, irreversible and hopeless conditions or illnesses and who are considering a hastened death. This would include conditions which will invariably lead to dementia, such as Alzheimer’s Disease, Huntington’s Disease, in some cases Parkinson’s Disease — and there may be others.
Because the law requires that the Network must work with a mentally competent adult who is capable of providing the means for self-deliverance and carrying out the act, a person would have to be in the early stages of dementia. We appreciate that there may still be quality of life left at that point but when competence is lost the Network would not be able to provide the information and support necessary for the member to carry out self-deliverance. So it becomes a choice to make in the early stages and not after the disease progresses.
We also realize that the determination of mental competence is not always clear. For example, a person may not remember what they had for breakfast but may still be very clear that they are ready to die. They also have to be competent enough to remember what they were told about how to carry out the act. Because a disease like Alzheimer’s does not follow a straight course, a person may be lucid at one point, not be at the next, then regain lucidity. Because of the cyclical nature of the illness our Exit Guides must remind the member that if competence is lost we cannot continue with the case; we could possibly return if the person regains competence and still has the wish to end his or her life.
The other limitation on our services is that the member should be in their own home, rather than in an institutional setting.
GENERAL INFORMATION REGARDING YOUR CHOICES IF DEMENTIA OCCURS
Currently, in this country, there are about 100,000 individuals in the advanced stages of Alzheimer’s. Some would not have wanted to have gotten to that point. These are things that can be done:
1. Give thought to the conditions under which you would want your life to continue. Write these down in your advance directive, discuss them in detail with your loved ones to make sure they understand, discuss them with your doctors.
2. There is an advance directive for Alzheimer’s. It is called My Last Wish and is available on the ERGO web site (www.finalexit.org/ergo-store/) The first part, stating which treatments you would not want to have, is legally enforceable but it must be discussed beforehand with the person(s) designated to be your power of attorney for health care. The second part, which asks that your life not be prolonged if you have certain symptoms which you can indicate, must also be discussed but serves more as a guideline and a statement of your wishes
3. If you do wish to consider hastening your death, as a form of preemptive suicide, before your symptoms progress, it would be wise to read the book, Final Exit 3rd Edition by Derek Humphry. It describes general principles of self-deliverance as well as specific methods for achieving a peaceful, quick and gentle death. It can be ordered at the web site mentioned above, with an addendum which is valuable to provide additional information.
4. If you do feel that self-deliverance may be an option for you can contact the Network for further assistance.
5. If you do not want to end your life by self-deliverance, you might consider making a clear, written statement about the circumstances under which you would not want to be kept alive by any artificial means including antibiotics, hospitalization, artificial food and hydration, ventilation, dialysis, etc.
6. Some people who chose to hasten the dying process decide not to eat and drink. This will lead to death in about two weeks. If this is an acceptable option you should be getting care from a hospice to make sure you have access to medications and good oral hygiene to make you comfortable.
7. When dementia progresses often a person cannot feed themselves. You can state in advance that you do want to be fed but with no insistence or cajoling. If you do not eat when the food is presented it should be removed. It is helpful for the facility you are in to have this policy in writing so they will not be accused of neglect if you die as a result.
The Final Exit Network strongly encourages a person to think through — and maybe talk through with closest friends — a personal strategy for dealing with the possible onset of dementia. The Network can only help if there is a clearly defined individual plan for dealing with this type of illness.