Home With Terminal Illness
By Michael Appleton M.D.
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Behavior and control sometimes influences a person with a terminal illness. They may keep precise lists of their medications and activities, expect caregivers to be punctual and be generally demanding to all of those around them. It's the patient's need for control---or at least the illusion of control---that drives this behavior. People who were insecure and demanding and needed a rigid structure to their lives before their illness are often even more so when faced with dying.
For many people, dying is frightening. We lose much of the control we had in life. We can't do the things we want to do. We become frustrated and in time, may have to place our lives into the care of someone else.
And it is in these times, that both patient and caregivers attempt to exert influence over events that seems disorderly and unmanageable. Patients can appear fussy, unreasonable, and easily irritated when things are in disarray.
Try to understand the fear of losing control that underlies such behavior. Talk about these issues with the patient, or at least bring them up and make an effort to discuss them. It's helpful to allow and encourage as many activities as possible that will give the patient a sense of purpose and structure, and let them hold power over their fate.
When people are sick, particularly our loved ones, it's natural for us to want to do things for them to help make life easier. In doing so, we can contribute to their feelings of powerlessness and loss of control. Empowering people contributes to their sense of self-worth as human beings.
Remember: Enabling patients to retain control is empowering and healing.
Denial is our emotional buffer. It's an unconscious mechanism that cushions us against the painful events in our life. It's a way we can feel safe from threats to our survival. Some people are able to accept slowly the seriousness of their illness. Others can't seem to accept their dying, and will ignore facts as caregivers and physicians present them, or change the subject. Some patients may accept, to some degree, their impending death, but they can't clearly explain how they feel. Denial may also help some patients [and caregivers] get "over the hump" and through the worst part of what's happening.
Because denial allows us to maintain a feeling of safety, don't "break down" or challenge the patient's denial unless it interferes with the patients ability to function. Often a patient will accept the severity of his or her illness while family members remain in a state of denial. It's best to be truthful, but when a patient doesn't wish to acknowledge information, persisting isn't valuable---it is just a reflection of an unsatisfied need of the person pressing the issue.
Examine who needs to recognize what before continuing with an attempt to destroy a patient's denial for there are times when patients are so overwhelmed and gravely ill that delivering bad new is useless.
If we take away denial, we'd better have something better to replace it.
Family And Friends
Sometimes people who have not been involved in the care of a dying patient try to step in and take control. Usually they do this to get some sense of control, and to ease guilty feelings they may have over their previous lack of interest or participation. These people may inject themselves into the patients management, and generally become a thorn in everyone's side. They may recommend new therapies or new consultations, and push their own agenda for straightening things out. Most people who do this mean well and have good intentions.
Other "concerned bystanders" are simply ignorant, self-serving, or frightened. They will cause turmoil and interrupt the path to a smooth closure for the patient and family.
People such as this are difficult to deal with, and even harder to ignore. It's important to consider with care any suggested treatment changes. However the point here, is that the suggestions from others about treatment, must really answer the following questions:
1. Is this what the patient wants or would have wanted?
2. If we find another medical problem, will it be worth doing more tests and treatment?
3. Will this really make a difference?
4. Since we know the person is dying, will more tests and treatments improve the quality of life? Or will they take up more "living time" and just prolong dying?
Now while keeping the above information in mind, we must also recognize that the family is a basic unit. And within each family, there is a complex system with established interactions, behaviors and responses.
Dying at best, is a stressful situation for all. And relationships during this time of duress may become strained, which may precipitate disagreements.
Also, family members whose contact with those close to the patient has been superficial might arrive on the scene with lots of "advice" on how to handle things. They may feel guilty for not having participated in the family core, and attempt to "take over". In this instance, they need to be advised that the way the patient is being cared for is the best way, and that the current method will continue despite their suggestions.
(c) copyright 1997
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