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Making our own decisions is most important as we think of making health care choices. But as we consider end-of-life decisions for those suffering from Alzheimer's almost always the decisions fall in the laps of the family since the patient can no longer speak for himself/herself. This comes as no surprise for caregivers because they may have been making many decisions all along. So we really need to think about how to make end-of-life decisions on behalf of another. 

Letting Go

Much of end-of-life decisions is about deciding when is the right time to let go. My observation has been that families of those suffering from Alzheimer's are, on the whole, able to approach these issues with a great deal of grace. I feel one of the reasons is that these families have been suffering losses for years. The grief work has already begun. Thoughts of letting go of someone, though never easy, come as a matter of course for these families.

The idea of letting go is so central to these end-of-life decisions. Often the withholding of something like CPR is the only reasonable medical course but caregivers might have a hard time letting go and refuse to consent to a No CPR order. I have found over the years that families occasionally choose a more aggressive course of treatment to take care of their own emotions rather than doing what is in the best interest of the patient.  CPR
Let's talk about CPR for a moment. Cardiopulmonary Resuscitation was developed in the 1970's to help rescue victims of sudden death like those who drowned or were in auto accidents. Originally it was never intended for patients in a hospital or nursing home whose death was not unexpected. Yet today if a physician has not written a "do not resuscitate" order CPR is done routinely on every heart that stops whether in a hospital, a nurisng home or out in the community. The truth is that CPR is ineffective in providing long term survival to frail elderly patients like those typically suffering from dementia. Those who do survive (0-2%) are in worse condition than before their heart stopped and will spend their last days, weeks or months in a hospital ICU.

Because of the poor prognosis of CPR with the frail elderly, I feel it is most appropriate to have a No CPR order. Having a No CPR order is not giving up on life. It is giving up on the idea that CPR can provide long-term survival. It especially cannot provide a cure for Alzheimer's so why do it. Artificial Feeding> Another treatment decision that families sometimes face is the use of an artificial feeding tube. Eating difficulties can accompany the later stages of Alzheimer's. Most people see this as a sign of the progression of the disease and therefore it does not have to be treated aggressively with an artificial feeding tube. In a great deal of these cases a feeding tube will only prolong the dying process and make the patient more uncomfortable.

A legitimate question to follow would be "Wouldn't the patient die of dehydration without artificial feeding and wouldn't that be painful?" Yes they probably would die of dehydration. Since the beginning of time people have been dying like this and many do so today. Research and clinical evidence reveals that death by dehydration is a very compassionate and comfortable way to die. On the other hand hydrating by a feeding tube or IV's prolongs the dying process and may make it more uncomfortable by filling the body with fluids which can gather in the throat and lungs.

Comfort Measures Only

When a patient reaches the final stage of Alzheimer's many physicians and families consider providing comfort measures only. Dementia's final stage has the following characteristics: All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills. The brain appears to no longer to tell the body what to do. Failure to thrive. 

Dementia does not fit into what we normally think of as a "terminal" disease e.g. cancer with less than six months life expectency. But in reality it is terminal. As you know a person can suffer with Alzheimer's for up to a decade or more. People literally do not die from Alzheimer's. They die from complications resulting from dementia, like pneumonia or dehydration. But this final stage of the disease is an indication that the patient will die. When death is inevitable many choose to provide comfort measures only e.g. pain medications, oxygen. This includes choosing to forgo antibiotics because they will only prolong the dying process and will not cure the underlying problem--Alzheimer's.

Through all these decisions the family will be going through the emotional and spiritual work of letting go. Hopefully you will have a support system of friends, a spiritual congregation and clergy to aid you in your journey.

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