Alzheimer's Caregiving, End of Life Issues

BJB EDUCATIONAL SERVICES

Barbara J. Bridges, R.N., M.S.N., M.S.H.C.M., M.B.A.

End of Life Issues for Dementia Caregivers

Preface:

Decisions and issues discussed in this article are of a highly philosophical nature for each person with dementing illness and his or her family to contemplate. There is no intent in this article to influence anyone in making these very personal decisions, rather the intent is to inform and educate those facing end of life issues so that they can make appropriate determinations for themselves and/or their loved ones.

Obviously, it is best, if end of life issues have been previously addressed in legal documents by the person with dementing illness. Unfortunately, many times family members are left to make decisions in a crisis situation, sometimes creating a great deal of conflict. To prevent making decisions in a crisis, it is very appropriate, if not essential, for families to discuss the situations presented in this article at an early stage of the disease process or, preferably, before the disease occurs, rather than waiting until everyone is stressed when death is imminent.

You may choose to place your loved one in a hospice program. Hospice programs provide services to those with any terminal condition, including dementing illness. Hospice staff are very knowledgeable and understanding about the dying process, and can provide counsel and guidance to families and to those with the disease. Usually hospice programs can start in the last few months of the disease process.

It is important to note that information contained in this article is somewhat descriptive in nature.

Introduction:

Caregivers frequently ask what to expect when their loved ones with dementing illness reach the end stages of the disease process. People with these diseases and their responses to them are all a little different, of course, and no one can predict exactly what will happen in the end. After having had years of clinical experience in this field, however, there are some fairly common situations that occur in the end stage, provided there are no other life threatening diseases or illnesses present.

One of the situations that often occurs is recurrent infection, usually either a urinary tract infection, or more frequently, pneumonia. Because of the frailty of most people by the time they reach this stage of their disease, recovery from recurrent infections is very rare, each bout with infection leaving the person more frail and weak.

This article addresses more specifically problems with swallowing and resultant pneumonia, but the decision making process is the same regardless of the cause of infection.

Development of problems with coordination of swallowing and breathing:

Typically, the person with dementing illness, as the disease progresses and the brain becomes more and more damaged, becomes not only cognitively impaired, but also progressively physically impaired. Swallowing becomes increasingly difficult. We have all had, I am certain, the occasional experience of drinking a liquid and inhaling at the same time, causing one to cough and choke. You aspirated fluids into your trachea (windpipe) and lungs when this happened. This situation is exactly what happens with many people with increasing brain damage when the brain no longer is capable of coordinating swallowing and breathing. The danger of aspiration of food or fluids into the lungs is that there is a tremendous potential for developing an aspiration pneumonia, due to inappropriate substances ending up in the lungs providing a medium in which bacteria can grow and prosper.

Caregivers may first observe an occasional problem with swallowing and aspiration of fluids. Using a straw for drinking may be helpful, but be aware that some people with dementia cannot stop sucking on straws, causing an entire glassful of fluid to be inhaled. Utilizing a glass that is more “v” shaped (that is with the diameter at the top larger than the diameter at the bottom) may be helpful, as the person will not have to tip his/her head back very far to drink.

Some speech/swallowing therapists recommend giving the person who is frequently aspirating fluids only thickened liquids. Sometimes thickening liquids prevents aspiration. Other times this technique will not work, and since the thickened liquids are thickened with starches and sugars, inhaling these substances into the lungs provides a perfect medium for bacterial growth, with the resultant increased potential to develop aspiration pneumonia. In these situations, it is more appropriate to give fluids that will be the least likely to cause bacterial growth (tea, water, weak decaffeinated coffee) rather than to continue with thickened liquids.

Swallowing problems will increase as the brain becomes more and more damaged. My clinical experience is that the person may live with these increasing problems of coordinating swallowing and breathing for approximately 6-12 months, with recurring episodes of aspiration pneumonia developing toward the end of life. Antibiotics may be helpful at first, but because the initial cause of the pneumonia is not reversible, ultimately there is constant pneumonia which will not respond to antibiotics. Recurrent aspiration pneumonia frequently is the cause of death in those with dementing illness.

Decisions to be made when intake of fluids and food is no longer possible and nothing more can be done medically or when there is recurrent pneumonia or other type of infection with no hope for treatment:

There is no more difficult time for families who have been watching their loved ones struggle for years with the disease causing dementing illness than that of realizing the end of this long journey may be imminent. Decisions made at this time will, hopefully, have been predetermined by the person’s wishes expressed in a living will. Alternatively, hopefully, families have come to some agreement as to the course of action to take when their loved ones can no longer eat and/or drink or respond to treatment.

In most instances, people with these dementing illness causing diseases readily express their desire to cease living throughout the disease process. They have been fearful, uncomfortable, and to them, not leading a very meaningful quality of life. It may be helpful to families to review their loved ones expressed desires as a way of preparing for making appropriate decisions or to prepare for losing their loved ones. Obviously, spiritual assistance from clergy can be very valuable at this time.

Choices and decisions, if not previously determined may include:

	Continuation of antibiotics Many times when aspiration pneumonia is nearly continuous, or any infection is not responding to antibiotics, families and/or persons with the disease will be given a choice of whether or not to continue with antibiotic treatment. Probably, in reality, it makes little difference. One may wish to weigh the potential discomfort of injectable antibiotics, the usual vehicle of administration when a person is having breathing or swallowing difficulties.
	The use of intravenous fluids or gastric feeding tubes Most people, as part of their living will, will have made the choice not to have hydration or supplemental feeding via intravenous fluids in their veins or feeding tubes inserted into their stomachs. The utilization of these measures will obviously prolong life. These are very personal choices. There is no way to determine how long one may be maintained with fluids or gastric feedings. Usually people opting not to supplement with fluids or gastric feedings will pass on within 4-10 days, once fluids and foods can no longer be ingested by mouth.
	The use of oxygen When death is imminent, families are often offered the choice of having oxygen administered to make breathing less labored. Some care facilities administer oxygen routinely. Others give families this choice. Some people with the disease prefer not to have the discomfort of an oxygen mask or cannula as they begin this dying process. If oxygen is administered, it is helpful to keep the mouth and nose moist to prevent drying of the mouth or nose from the oxygen flow.
	The use of morphine Again, when death is imminent, families or the person with the disease may be offered the option of having morphine administered in small doses both to make breathing easier and/or to minimize the potential of pain. During the dying process breathing may be somewhat noisy. Morphine may ease breathing and suppress gurgling. Morphine or other pain medication may be administered by injection, via a patch, or most often, in a form that can be dissolved under the tongue.

Summary:

It is obvious that many decisions need to be made by persons with dementing illness and their families, prior to the end of the disease process. Legal papers with appropriate instructions, pre-planned funeral arrangements, and frank discussions with family with personal preferences at end of life will make this difficult time much easier for all.

This end of life process, which obviously is a natural part of living, should be a time of peace and tranquility for persons passing on and for their families. This is a time when family members can express their love and caring, while quietly holding the hands of their loved one. It is my hope that this article will provide the stimulus to make all preparations and decisions prior to imminent death, so that this very difficult time can be one of peace and compassion.

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End of Life Article