NU 491: Concept of Palliative Care
Physical & Sexual Concerns of Palliative Treatment
Scholarly Paper Writing
Rozina S. Rashid

A diagnosis means twice a heartache, discomfort and worry for a human. When a loved one is stricken with the life threatening illness, every member of the family feels the pain. Life threatening illnesses are marked by fluctuations overtime and the individual suffering from it may experience pain and other symptoms that are not always adequately managed. The individual may have concerned and quarries but unable to ventilate it out. Their care givers often feel stress and burden as the illness progress but they have no support group to whom they share their feelings. In such circumstances, palliative care serves as an intervention to help those. World Health Organization (2012) defines palliative care as, “an intervention that improves the quality of life of patients and their families experiencing intermittent illness, with the ultimate goal being to offer pain and symptom relief, as well as spiritual and psychosocial support.” (Effiong, 2012, p. 01).
In my clinical rotation at KIRAN hospital I came across a 20 years old female patient who came to the hospital for her 6th cycle of chemotherapy. 1.5 years back she was diagnosed with Ewing Sarcoma. This diagnosis has not come up in few visits, it took months because of which it was spread towards the chest-wall and the left lung thus she underwent the surgery for the removal of the tumor. Unfortunately, during surgery her 2 anterior and 2 posterior ribs were removed. The first time when I interacted with my patient she didn’t verbalized her concerned but her mother was very much tensed for her daughter’s future physical and sexual health because of palliative treatment. Later on my patient herself verbalized that because of the removal of my ribs now there is imperfection in my body. Furthermore, she verbalized that I have heard that because of the side effects of chemotherapy fertility of a girl is affected. I also won’t get married and won’t be able to conceive a child. On further exploring I came to know that her aunty who wanted her to marry her son has now refused her only for the reason that she is on palliative treatment. At that point in time I was silent for few minutes and thinking that how difficult and traumatic it would be for her and these feelings compelled me to write my paper on physical and sexual concerns of palliative treatment.
Illnesses come without any invitations, they are not pre planned but they affect all the aspects of human life and if the illness is life threatening then the condition are worse. As in my patient scenario her diseases and its treatment had distress her physical, sexual and psychological aspect of health. She was getting treatment for a rare, aggressive, and highly malignant tumor which usually occurs in adolescence and young adulthood. (American Cancer Society, 2012) though the tumor was removed but her it had left with many unanswered concerns. The first concern comes under the physical and psychological domain of palliative care. The patient was worried because of the removal of ribs; during interview she verbalized the feelings of incompleteness and inferiority. She was bothered about the level of activity she can perform after the surgery, her weight loss because of disease process and was upset because of her disturbed body image. I tried to support her at that point in time, I allowed her to verbalize her feelings and meanwhile, I listens her very thoughtfully. After that, I helped my client in identifying her own strengths and positive aspect her personality in order to boost up her self-esteem. Literature affirms that, nurses as a caregiver provide patients with support by listening to patients narratives moreover, the support and assistance of caregivers gives patients the power and strength to move on with their lives (Snellman, Gustafsson & Gustafsson, 2012, p. 04). I also involved my patient’s mother in her care and discussion and allowed her to share her concerns as well. I advise them to consult a doctor for the option of prosthesis ribs implantation in place of removed ribs. According to American Cancer Society (2012) it says that, “For a Ewing tumor in the chest wall, the ribs are replaced with a man-made material to close the chest wall defect.” Patient was quite relaxed after knowing the knowledge of prosthesis. Furthermore, I encouraged my patient to eat nutritious and healthy food and we together developed the diet plan.
Another concerned which I came across was the fertility issue because of the side effects of chemotherapy. This comes under the sexual domain of palliative care. As mentioned in case scenario that patient was refused by her aunty as her daughter in law and stigmatized as an infertile girl. This event distresses her emotionally and thus, she has feeling that no one would accept her as a life partner and she won’t be able to have any child. Initially it was difficult for me to communicate on this topic in palliative care setting as it was the first exposure to such setting however, I tried to overcome my discomfort and intervene for her in a supportive manner. Firstly, I assessed the prior knowledge of my patient and her mother related to the long term side effects of chemotherapy on fertility. Then I helped them to understand sexuality from different perspective. I told them that sexuality not only means the sexual intercourse and having a child it’s a broad spectrum of feelings, the feelings of intimacy through close body contact, hugging, kissing, meaningful eye contact and other forms of nonphysical expression of closeness (Lemieux, Kaiser, Pereira & Meadows, 2004). Furthermore, I also explored her feelings and willingness for adopting a child once she gets married. I encouraged her mother to share this concern with a doctor as well so that he/she can guide them and provide them with different options. I felt that it was too earlier to stigmatized the girl as an infertile, literature reveals that, children and adolescence those receives the palliative treatment of Ewing sarcoma that has not spread to distant organs and tissues possess medium risk of infertility in their adult life (Children Oncology Group, 2008). I shared this literature with my patient as well and helped her to focuses on the positive aspects, after that she was a little satisfied and showed her willingness for consulting doctor regarding fertility concerns.
Here I would like to make few of the recommendations which could help at community and individual level in order to help those, receiving palliative treatment. Firstly our society lacks adequate knowledge and has several misconceptions regarding cancer treatment they even think that cancer is a contagious disease. In such situation we as a health care provider can bring up an attitude change by educating and enhancing the awareness level of the community and can play a persuasive part in changing such negative perceptions. While educating the community we firstly have to observe the understanding level of audience and other factors and then plan teaching. Moreover, teaching should be given in a simple language which should be understood by general public. We can also arrange sessions and telecast different forum discussion on television for awareness. Secondly, it is important to involve family members in patient palliative care treatment. They are the one who mostly care for the patient thus, it is also equally important to give time for family members to speak with health care professionals. It is our duty to provide patient and its family members with complete knowledge of treatment and it prognosis, this would eventually decrease their concerns, fears and anxiety. As literature suggests that, providing patient and family with the knowledge of health status is important and it enables them to cope up with situation (Snellman et al., 2012, p. 04). The limitation for me while intervene the patient was that, I unable to counsel and involved the other family members in patient care as they were living in Hyderabad. Furthermore, at individual level the health care providers must possess god linguistic skills when dealing with patients as in palliative care setting. As literature reveals that, communication between patient and care providers empowers patients to make their own decisions regarding their health (Snellman et al., 2012, p. 05). Lastly I would like to recommend parents that do not neglect any symptom of your child because at times a small symptom could be an indication for a serious illness. As in my patient she was only suffering from swelling and pain on her left shoulder but unluckily she was diagnosed with the cancer. American Cancer Society (2012) mentioned that the sign and symptoms of Ewing sarcoma are typical of normal bumps, bruises or of bone infection therefore it is not recognized right away.
In conclusion I would like to say that there are multiple concerns of an individual who is getting palliative treatment therefore, it is our foremost duty to resolve and answer their concerns. As a nurse we should assess patient holistically, keeping in mind to focus all the domains of palliative care, listen to patients and allow them and their family to speak. Literature illustrates that, Nurse patient relationship in palliative care plays a vital role in the treatment and recovery of the patient and it is considered as the foundation of palliative nursing care. (Mok & Chiu, 2004, p. 482)

References
American Cancer Society. (2012). Ewing family of tumors. Retrieved from http://documents.cancer.org/acs/groups/cid/documents/webcontent/003099-pdf.pdf
Children Oncology Group. (2008). Fertility issues in childhood cancer treatment. Retrieved from http://www.survivorshipguidelines.org/pdf/FemaleHealthIssues.pdf Effiong, A. (2012). Palliative care for the management of chronic illness: a systematic review study protocol. BMJ Open, 2, 1-6. doi: 10.1136/bmjopen-2012-000899
Lemieux, L., Kaiser, S., Pereira, J., & Meadows, L. (2004). Sexuality in palliative care: patient perspectives. Palliative Medicine, 18(630), 630-637. doi: 10.1191/0269216304pm941oa
Mok, E., & Chiu, P. (2004). Issues and innovations in nursing practice: Nurse–patient relationships in palliative care. Journal of Advanced Nursing, 48(5), 475-483. doi: 10.1111/j.1365-2648.2004.03230
Snellman, I., Gustafsson, C., & Gustafsson, L. (2012). Patients’ and caregivers’ attributes in a meaningful care encounter: Similarities and notable differences. ISRN Nursing, 1-9. doi: 10.5402/2012/320145