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The Philosophy of Caretaking for an Ill Person
Ernest Rosenbaum, MD
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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.
The Prognosis of Hope
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Hope can be a part of one's upbringing from childhood, depending on family philosophy, or it can be developed and adopted through life experiences, as well as from friends, spiritual or religious philosophy or from examples in life.
A child who has many disappointments as he grows up is less likely to be as hopeful as a person who was better supported, both psychologically and through physical acts of one's family and friends.
A lot depends on development of one's personality and how one has dealt with crises during one's life, as the better one copes with crises, the better chance one has of being more hopeful. In contrast to this, at the end-of- life when one requests euthanasia, it reflects a feeling of severe hopelessness and wishing for peace and the end of whatever suffering is ongoing, both physically and psychologically. Again, a lot of this depends on the cancer stage, physical condition, degree of suffering and the caregiver and the type of care one is receiving, as well as the support from the medical team, family and friends.
It can be said that the goal of the medical and social professions is to promote hope within the concept of a realistic chance that life will continue with some degree of quality and purpose during this final period of life.
An interesting analogy is that of Frankl,2 a survivor of a German concentration camp, who faced death and found that many of his fellow captives continued to have a reason and purpose for living. They often fared better than those who found the concentration camp experience dreadful and overwhelming. He found, in the Buchenwald Concentration Camp, the physician prisoners kept hope alive by preparing and presenting medical papers, often late at night when fellow prisoners had gone to sleep, and even put together a working x-ray machine. It was felt that hopelessness had a significant effect on the human response to illness. 3This has also been shown to be an effective part of treatment for breast cancer patients, as those who were not passive acceptors had increased survival.
Palliative Care and Hope
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Palliative care offers a different approach to medical care, when it is being, in part, withdrawn and replaced by comfort care programs. Often in spite of facing death there still remains some optimism, reassurance and hope that there could be better days with less suffering, as well as moments of calm and happiness that could be intermittent despite the poor prognosis.4
One of the objectives is to reduce frustration because of the ongoing failure in the palliative care situation through compassionate nursing and medical care. Those who can adopt better coping habits, especially during the chronic and terminal phases of an illness, while being as realistic as possible, can help reduce the feeling of hopelessness. Removing hope even in a palliative situation is not merited for most people, as hope can help promote a better emotional well-being and through spiritual and religious aspects of life can contribute to a more peaceful and calm feeling with reduced fear. Patients are the best source of discussing their feelings of hope versus hopelessness, and by expressing this and being realistic can improve their peace of mind.
Thus, hope can be seen as a major power and element for sustaining life. We hope for better times, we hope for increased survival, we hope for a treatment that can cure or palliate and make a disease process stable, we hope for a better life, as well as we hope for our family, such as a future child's wedding. We also hope that we can prolong life by averting death through medical treatment and supportive care.
Hope is also related to trust and confidence in the medical team, with support of family and friends. Even if disease is progressive and one enters the palliative and dying phase, through spirituality, there is hope that the suffering will end, and for those of various religious faiths (who believe in the hereafter) that they will carry on life in the hereafter.
In contrast to this, hope can be reduced or nullified through resignation to one's fate, to hopelessness, or by loss of empathy and compassion and withdrawing oneself from reality and from those in the medical, family and friend's supporting team. If life has been a disappointment and unsatisfactory, and one may wish to involve those around him in this psychologically destructive process. The latter often has grave psychological implications and is described along with the process of utter despair.
Even in situations where there is no realistic hope at the end of life, one can wish for control of suffering and a peaceful end as a replacement for hope for an unrealistic future. This is often where spiritual and religious philosophic feelings become more meaningful than hope.
When one gives up hope, one also gives up the will to live, and this can lead to thoughts and wishes of euthanasia or a peaceful end-of-life.
An additional factor of hope is that it is not a steady state. It can vary depending on various points in the life trajectory of a chronically ill or terminally ill heart or cancer patient, or one in a terminal phase of illness. A lot of the life trajectory depends, in part, in how one has coped with serious problems in childhood, adolescence, youth, and throughout life. It also relates to having goals and values that one has learned and helps one adapt to difficult situations. Spiritual beliefs and values can also strengthen one's feeling of hopefulness and help patients survive through difficult life-threatening problems.
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, which 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.
This is often helped by setting realistic goals, following a cancer or incurable chronic illness, or a curable illness, which creates a life-challenging problem. When the analysis and prognosis is poor, the initial goal is to try to cure an illness, thus saving life, and guaranteeing a better survival and quality of life versus hopelessness that nothing can be done and that fate, be it fair or unfair, is in charge. Often at this juncture, the medical team can feel potential failure, which can be very distressful for them. Some medical problems are resistant to cure, and although we try to spare patients from a potential reality that a cure is not likely, one never truly knows what the future prognosis will bring. By cultivating realistic hope when it is practical and possible versus care in a palliative medical situation, it is becoming less common to say that one is "Sorry, nothing more can be done for you," thus projecting only hopelessness. There is still the final remaining hope that one can have peace of mind, reduced suffering, great supportive care by family, friends and the medical team, and, if life is to be ended, it can be ended on a more peaceful phase.
We have found that by having conversations among family, friends and patients, we can encourage more positive feelings. By leaving a legacy of love through creating a permanence of a life that has been lived, good memories, and a sharing of family values and philosophy through what we term, The Legacy Project (Reference: www.cancersupportivecare.com) and through completion of the necessary forms, such as Advanced Directives, wills, and designations of the patient's and family's wishes, one can give emotional support and comfort to both patient and family.
- 1. Menninger, K., "Hope." Am J Psychiatry, 1959, December, 481-91.
2. Frankl, V. E., "Man's Search for Meaning." Boston: Beacon Press, 1963.
3. Menninger, K., "Hope." Am J Psychiatry, 1959 and Frankl, V., "Man's Search for Meaning." Boston Beacon Press, 1963, and Hinds, P. S., "Adolescent Hopefulness in Illness and Health." Adv Nurs Sci, 1988, April: 79-88.
4. Scanlon, C., "Creating a Vision of Hope: The Challenge of Palliative Care." Oncol Nurs Form, 1989; 16:491-96.
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