Making End of Life Decisions
Medical, Emotional and Spiritual
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 disease, decision making almost always falls 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 the decisions all along. So we really need to think about how to make end-of-life decisions on behalf of another.
Much of end-of-life decision making is about deciding when is the right time to let go. My observation has been that families of 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 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.
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 nursing 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, months in a hospital ICU.
Because of the poor prognosis of CPR with the frail elderly, I feel it is most appropriate for all elderly patients (over age 70) 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 disease, so why do it? 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?" The answer is yes, they probably would die of dehydration. Since the beginning of time people have been dying of dehydration 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 prolongs the dying process and may make it more uncomfortable by filling the body with fluids which can gather in the throat and lungs.
When a patient reaches the final stage of Alzheimer's disease, 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.
Requires assistance with feeding.
Loss of basic psychomotor skills.
The brain appears to no longer tell the body what to do.
Failure to thrive.
Dementia does not fit into what we normally think of as a
"terminal" disease such as cancer, with less than six months life
expectancy. But in reality it is terminal. As you know, a
person can suffer from Alzheimer's for up to a decade or more.
People literally do not die of Alzheimer's disease, rather they die from
complications resulting from the disease, like pneumonia or
dehydration. But this final stage is an indication that the patient
will die. When death is inevitable many choose to provide comfort
measures only, such as pain medications or 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 of 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. Conversations with the patient's physician are most important in making decisions.
Source: "Making End of Life Decisions", by Hank Dunn, Family and Friends (Summer 1993), Alzheimer's Disease and Related Disorders Association, Inc., Northern Virginia Chapter