Being diagnosed with a terminal illness is perhaps one of the most foreboding nightmares for mankind, young or old. Terminal illnesses refer to malignant conditions that cannot be adequately treated thus resulting in the death of the sufferer (Zimmerman, 1985, p. 65). The realization that you are going to die due to a fatal illness such as advanced cancer, full-blown HIV/AIDS or another type of terminal disease can be terrifying, to say the least. More importantly, the diseases have continued to inflict pain and suffering on millions of patients and their families. An estimated 33 million people are currently infected by life-threatening illnesses globally (Doyle, Hanks, Cherny & Calcan, 2005, p. 57). The burden of offering palliative care is enormous to the family members and the caregivers. The most experienced physicians may find it daunting to initiate emotionally-laden conversations about palliative care with terminally ill patients, particularly in dying children. It may therefore be almost impossible for family members to offer competent and compassionate care if necessary preparations and training are not delivered to the family by health care professionals. Physicians must consider ethical implications and utilize communication skills while passing information regarding the disease to the patient and the family members (De Haes & Teunissen, 2005, p. 348).
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But what does palliative care entail? According to Nelms (2004), palliative care focuses on the relief of anguish, psychosocial support, spiritual support, and closure leading up to and during the final days of life. It entails showing empathy and care to a terminally ill person to improve his or her quality of life before they die. According to Lam (2006, p.13), empathy refers to the feelings and thoughts generated in people when they are aroused by other people’s situations. Physicians need to empathize with the patients during the delivery of palliative care. From the standpoint of the health care professional, palliative care involves not only taking care of the terminally ill person, but also the families who may be suffering emotional and psychological anguish. The strain caused to the family in terms of resources and time widens the scope of palliative care (Doyle, Hanks, Cherny & Calcan, 2005). In all circumstances, early identification, careful assessment and appropriate treatment are key ingredients of palliative care (Doyle, Hanks, Cherny & Calcan, 2005). Empathy and compassion are key components in helping the dying individual feel like he still has a viable life, until his body yields to the terminal disease. The physicians therefore need to undertake training on conducting conversations with the dying child’s family with an aim of helping them cope with the situation (Kuttner, 2007, p.16-20).
Communication is imperative in promoting the quality of life of the patients during this difficult period by helping them cope with emotional feelings and grief associated with the knowledge that they are going to die. Reduction of the distress by offering psychological support and spiritual guidance is important in addressing emotional feelings. Avoidance of medical terminologies is essential in order to relieve anxiety and confusion in the family members. Information on the patient and the response to medications should be relayed in a bid to instill hope and confidence in the family members and the patient. The patients’ and family members’ coping capabilities are improved in the face of grief, pain and loss (De Haes & Teunissen, 2005, p. 348).
The medical personnel has increasingly noted the importance of appropriate instruction during training and delivery of palliative care. Lam (2006) asserted that the integration of training on empathy and open communication in medical training will help the medical personnel to effectively deliver palliative care. Conventional training designed to give students the knowledge on how to fix only anomalies on patients is addressed by this kind of training. However, changes in delivery of palliative care have been instituted by medics in hospices. Training to caregivers on the provision of psychological and emotional needs was undertaken to offer holistic services (Carter & Levetown, 2004).
Young children with terminal diseases deserve to enjoy as much routine and normalcy as possible, as any adult living with a terminal disease. They deserve to depart with dignity and pride when their end comes. Family members and caretakers must look at the child’s perspective at this crucial time in their lives. While the same principles may be drawn regarding end-of-life care management among adults and children, significant differences regarding their needs do exist (Dailey, 1988). Palliative management for children represents a unique, though closely correlated field to adult palliative management. Palliative care of a child may extend over many years depending on the type of terminal disease. The nature of the disease will also dictate the length of time with some succumbing to death within months, while others may linger for years after being diagnosed. The nature of the disease makes it important for the child’s perspective to be given maximum attention.
The concept of a dying child’s perspective has received increasing attention in many child-related programs since the 1990s (Carter & Levetown, 2004, p. 187). The knowledge that the involvement and contribution of the child are important in the delivery of effective palliative care has helped inform this notion. The political, social, cultural and emotional attention directed towards children in recent times is an indicator that children are expected to be active participants in their palliative care. According to Carter and Levetown (2004, p. 189), the emphasis on child’s perspective has the potential to mobilize children toward a position of equal standing. The need to acknowledge the children as active rather than passive participants has been brought forward in palliative care.
A Child’s perspective, as shown above, can consequently be used in palliative care of children with terminal illnesses. Positive results will be reflected when care and treatment are offered from the perspective of the child and the realization that the child is a visible subject with set expectations regarding his own life (Skivenes & Strandbu, 2006, p. 14). A child with a terminal illness will feel loved and cherished by those around him, including family members and caregivers if his participation and contribution in the family or social structure is well respected despite his condition. Love has a positive impact on the quality of life despite the stark knowledge that the child is in the final lap of life due to a terminal illness.
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Carter, B. & Levetown, M. (2004). Palliative Care for Infants, Children, and Adolescents. Baltimore: The Johns Hopkins University Press.
De Haes H & Teunissen S. (2005) Communication in palliative care: a review of recent literature. Current Opinion of Oncology, 17(4), 345-50. Web.
Doyle, D., Hanks, G., Cherny, N., & Calman, K. (2004). Introduction. In Doyle, D. Hanks, G. Cherny, N., & Calman, K. (Eds.), Oxford textbook of palliative Medicine. (pp. 1-4). Oxford, UK: Oxford University Press.
Kuttner, Leora. (2007). Talking with Families when Their Children Are Dying. Medical Principles and practice, 16(1):16-20. Web.
Lam, K. (2006). Empathy an essential tool for communication for palliative care doctors.
HKSPM Newsletter, 2(13). Web.
Skivenes, M., & Strandbu, A. (2006). ”A Child perspective and participation for children” Journal of Children, Youth and Environments, 16 (2): 10-27.
Zimmerman, J. (1985). Hospice: Complete Care for the Terminally Ill. 2nd Eds. New York: Lippincott Williams & Wilkins.