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Palliiative Care and Hope
Ernest Rosenbaum, MD
Palliative care offers a different approach to medical care, when it is being, in part, withdrawn and replaced by comfort care programs.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.
- 4. Scanlon, C., "Creating a Vision of Hope: The Challenge of Palliative Care." Oncol Nurs Form, 1989; 16:491-96.
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