Reciprocal Suffering of Palliative Care Beneficiaries
Palliative care is well known for its service for the terminally ill or bedridden elderly/ patients. Since patients/elderly and their family together constitute the unit of care it is essential to realize the significance of family caregivers in executing the process of care. This study intends to identify the perceptions of the care receivers on the stress of their family caregivers and the impact of the same on their own total wellbeing. The study reveals that the care receivers are very much concerned about the strain and stress of their care givers in connection with the process of caring them.
Among the care giving agencies existing in the field of health, Palliative care agencies have a different focus. The term palliative means to make comfortable by treating a person’s pain and other illness-related symptoms. According to Von’ Gunten and Romer (2000), Palliative Care is interdisciplinary care that focuses on the relief of suffering and improving quality of life. Since the patients/elderly and their families together constitute the beneficiaries, relief from suffering is applicable to the family caregivers also.
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Eric Cassell describes suffering as the challenges that threaten the intactness of a person as a complex social and psychological entity. Pain and suffering are partners to the end-of-life experience. Dame cicely Saunders, coined pain connected with dying as total pain. Total pain consists of four components: physical pain, anxiety, interpersonal interactions and non-acceptance. Those who are terminally ill and bedridden are unable to maintain themselves and naturally they depend on others, usually the family. In the caregiving the family may be facing severe stress.
There is no doubt that the physical labour of the caregivers may vary depending on the stage of illness. In the later stages of illness, this physical strain of the caregivers can dominate and disturb the activities and schedule of a household. In a survey by the National Family Caregivers Association (2000), more than half of the family caregivers provided help with activities of daily living and 85 percent of the care receivers were fully reliant on their caregiver for this help.
The bedridden condition of a diseased or elderly person affects the total balance of the household activities especially that of the primary caretaker in the family. Thus in spite of the activities of daily living, medications, changing dresses, bathing and clothing a patient, the caregivers spend a considerable amount of time and energy transporting the patient and keeping the household functioning (Hauser and Kramer,2004)
It is true that the physical ill health directly influences the mental health of a person. The diseased condition makes a person psychologically weak and they always seek a support to their mental stability. Persons with chronic conditions have to adjust many of their aspirations, lifestyle and employment. The depression emerging from such compromises may reduce a person’s motivation to gain access to medical care and also undermine the ability to cope with pain (Turner and Kelly, 2000).While medicine helps to relieve the physical suffering to an extent the emotional cost of long term treatment left neglected. It is difficult to diagnose depression in the medically ill but diagnosis and treatment are essential. Though the medical professionals are experts in medical and even physical care, the care receivers often depend on their family for emotional care which in turn affects their physical symptoms.
Studies have revealed that socio-economic environment of a terminally ill or bedridden elderly influences the intensity of physical and psychological pain. Apparently the socio-economic conditions may deteriorate after the diagnosis of the disease or an elderly become bedridden. In such a condition the caregiver has to take care of the care receiver at the same time the imbalanced socio-economic status of their family. Family size, family income, education etc. may influence the socio-economic condition of the diseased and their family. Visiting friends and relatives, sharing old memories, attending family functions etc may reduce the physical and psychological pain related with the diseased condition.
A care receiver’s ability to be cared for and die at home is heavily dependent upon the efforts of family care givers. Considerable stresses are associated with such caregiving including physical, psychological and financial burdens. It is revealed that there are diverse sources of stress and burden for family of the diseased/elderly especially through the final stage of life maybe days, weeks or months. During that period the caregivers encounter the physical strain of sleeplessness and emotional stress.
Even though the caregivers consider these burdens as precious and worthy, they are actually going through a period of physical, psychological, economic and social exhaustion. Studies that explore the effects of suffering and advancing cancer on the anxiety and distress of an affected couple(both the caregiver and care receiver) show that worry and anxiety are at least as high for the caregiver as they are for the terminally ill patient (Hoskins et al.,1996; Kaye and Gracely, 1993).
Care demands can be particularly onerous towards the end of life, and emotional stresses can be particularly high. Studies show that family care givers experience levels of depression similar to care receivers and greater that the general population. Psychosocial and mental health challenges are accompanied by physical burdens. In addition to their usual roles, there are new roles that caregivers take on, including roles that were previously those of the care receivers. This creates the potential for extra physical, emotional and social workload in addition to time-management pressures.
A reciprocal suffering shared by the beneficiaries is a central factor of dying and is also reported as such by care receivers. They endure two worlds of suffering. They share a major anxiety in illness equal to their own distress about death, experience of pain or loss of a well identity in the suffering experienced by their family caregivers(Loscalzo and Zabora, 1998).
According to sociologist Charles Horton Cooley, individuals develop their concept of self by observing how they are perceived by others, a concept Cooley coined as the “looking-glass self.” This process, particularly when applied to the digital age, raises questions about the nature of identity, socialization, and the changing landscape of self. The looking-glass self describes the process wherein individuals base their sense of self on how they believe others view them.
Using social interaction as a type of “mirror,” people use the judgments they receive from others to measure their own worth, values, and behavior. Here the care receivers perceive that their affected condition creating a burdensome to their family care givers. Since the caring process makes the family caregivers detached from their usual activities and aspirations, the care receivers realizes that they are the real cause of that particular detachment and they think the caregivers may feel the caring responsibility as a burden.
The major objective of the study is to find out the perceptions of the beneficiaries on the stress of their family caregivers and how their concern and anxiety for the same in turn affects their own total wellbeing. The population of the study is Palliative care beneficiaries in Kerala.The three districts in Kerala (Trivandrum, Thrissur, Kozhikode) which represents the southern, central and northern zones respectively constitute the area of study. 100 patients/elderly who avail palliative care service from each of the three districts constitute the sample for the study. Data collected from the sample using semi-structured interview schedule.
For the care receivers, loss of self-efficacy and independency due to physical deterioration result in the sense of having become a burden to others. Self-perceived burden (SPB) has been defined as “a multi-dimensional construct arising from the care-recipients’ feelings of dependence and the resulting frustration and worry, which then lead to negative feelings of guilt at being responsible for the caregiver’s hardship. As most of the patients required considerable practical assistance, a major concern is the sheer physical load taken on by caregivers in attending to their physical needs, which involve a range of household tasks, and assistance with personal activities of daily living.
Care-givers usually have other roles and responsibilities within their own context. Patients witnessed the extra stress of caregivers who also have to contend with issues like childcare and work commitments. They may also need to restrict their own social activities or even to take leave from work, which imposed additional financial hardships. For patients with children, there is a sense of an unfulfilled parental role, which left others with the task. 3. Emotional burdens: This originates from the empathetic concern to the emotional strain of the caregivers. The emotional burdens laid on the caregivers include: anxiety related to uncertainty, strain of vigilance over patients’ well-being, frustration with their role as well as overwhelming due to competing demands.