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The Philosophy of Caretaking for an Ill Person
Ernest Rosenbaum, MD
The basic goals for a caretaker are to give compassionate care, to be a listener and helper, and to help create hope.
I feel it does take an effort to understand the difficult fears, problems, and necessity of coping skills required in dealing with a person who is acutely or chronically ill. Recovering from the shock of a cancer diagnosis can change a life because of the illness and its resulting effects on how the survivor deals with the common everyday problems. New and acute problems arise, sometimes several times a day, daily, or often many times a week. These changes in how the survivor deals with the simple and sometimes complex tasks in everyday life often present very difficult problems not only for the patient but also for caregivers as well.
Recent studies have shown how the stress of the illness of a loved one or friend can affect how they themselves deal with their lives, as well as their efforts to help a loved one. It is often hard for them to continue to be optimistic and realistic about the patient's health and the results of whether s/he's getting better, worse or just stable. Sometimes, problems evolve that can be insurmountable.
The medical care system is so strained that it can no longer be as helpful with advice, guidance, and practical therapeutic expediencies, which can promote not only better health but also a better quality of life for both the patient and caregiver.
The diagnosis, how critical or chronic the medical problem is, what responses are expected, and results from current and future efforts, can affect not only the prognosis and the course of the illness, both physically and psychologically.
Under these circumstances, compassionate, loving care is the primary supportive treatment that can make a major difference to an ill person, as it follows the rule, The only time you need help is when you need it.
It is the hope that with a short or even a long period of time that the health status of an ill person will improve. This is not always possible even with the best treatments, and, one has to make a compromise with life's problems and find various expediencies that can improve quality of life and improve the length of survival as well.
At times, it is difficult to remain optimistic in the face of progressive or terminal illness, yet, one needs to cope with the feelings of sadness and helplessness as patient, caregiver and medical team struggle to find some form of equanimity and stability with the health problem.
When disease progresses, these deep problems usually just increase and can make life more difficult. At the same time with good supportive care, one can cope well and improve with hope and will to live.
There is an intrinsic relationship with hope, which is generated through the medical team and caregiver, to help defeat or reduce the feeling of hopelessness. This is often common when there is a diagnosis of a severe life-threatening disease, chronic disease, or toward the end stages of that disease, especially when terminal care is instituted.
The question for those with advanced disease is - is it fair to take away hope, to consider palliative care or, euthanasia... and just deal with the reality of future progression of illness and death? Often during palliative care, patients request euthanasia, fearing there will be a lot of suffering or discomfort at the end of life. In spite of this, hope for comfort and control of suffering is always merited.
Hope is of most importance as stated by Francis Bacon,
"Hope is the most beautiful of all the affections, and doth much to the prolongation of life, if it be not too often frustrated, but entertaineth fancy with an expectation of good."
The Oxford Dictionary has defined hope as, "to entertain expectations of something desired." It also has an emotional component beyond expectation and can be related as an emotional psychological human experience. Plants and trees often bend toward the sun, which can be compared to hope for improved survival.
Hope is the antithesis of despair and hopelessness, and they are probably polar opposites. Hopelessness is related to defeat and loss of control and leads to both despair and futility, which can devastate one's life.
Menninger was probably one of the first health professionals, who addressed the concept of hope in relation to treatment of patients with psychiatric disorders. He felt it was an important part of humanizing medicine in the 20th century, which had become more involved with technological therapies. He felt that hope could promote humanitarian goals that were in danger of being destroyed.1
The story of Pandora's Box from ancient Greek mythology discussed that when the box was opened, all the evils were dispersed throughout the world, and hope was concealed. Greeks placed hope along with other miseries and felt that was why hope was concealed within Pandora's Box.
Nietzsche in his discussions in Human, All Too Human (1878) stated, "Hope is the worst of evils, for it prolongs the torment of man."
In contrast to this, the Judeo-Christian belief is that hope is related to the congenial spirit of goodness. This is related to a saying, Where there is life, there is hope, but there is often a fragmentation of hope when one is watching, with humility, the prolonged dying of a loved one.
Florence Nightingale, the saint of the nursing profession, promoted palliative care and hope in her compassionate care during the Crimean War. Nurses in the American Civil War continued her ideas.
Often, there is collusion in trying to protect terminally ill patients from the truth of revealing that they are potentially dying, because they would lose hope more quickly. This is not always the case, as hopelessness does not necessarily quicken the dying process.
Hope also has another potential quality, as it can help make stress more tolerable. It may not only be an expectation, but it can also promote optimism and is more than wishful thinking. Hope is an active process that is present in the conscious as well as the unconscious mind.
- 1. Menninger, K., "Hope." Am J Psychiatry, 1959, December, 481-91.
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