According to World health organisation (2002), palliative care is an approach that inhibits and reduces the suffering related to life threatening illness by the means of timely recognition and immaculate assessment and treatment of physical, psychosocial and spiritual problems including pain. Thus, palliative care improves the quality of life of individual and family who are suffering from problems related to life-threatening illness by supporting the life of patient and respecting dying as a natural process. (Kuebler KK, 2007) In fact, people of any age group can be diagnosed with life-limiting illness. (RR, 2007) Palliative care that is suitable to an older adult may not fulfill the needs of a dying child. In order to provide holistic care to the patient and their family, an age appropriate palliative approach is essential. Rather than on the basis of diagnosis and clinical stage, palliative approach is more focused towards the individual need. Palliative approach is appropriate at any phase of illness. It provides a chance to organize and relish the rest of time they have and prepare for death by providing physical, psychological, social and spiritual support to the patient and their family members.
It is important to provide age appropriate palliative care as it is an active and definitive approach to caring. Physically, palliative approach support patient by helping to manage their pain and physical discomfort. Pain is the most common symptom that occurs in more than sixty-five percent of people who are suffering from life-limiting illness (Faull, Carter & Daniels, 2005). The progression of disease and the side effects of treatment may cause further symptoms such as nausea, constipation, anorexia, insomnia, and lethargy. Almost all of the palliative team has pain and symptom management expertise specialized in managing symptoms on the basis of the age group of patients. Such team promotes the continuity of care with the smooth and even transition of care (Pritchard, Cuvelier, Harlos& Barr, 2011).
The psychological need of a patient involves many processes like support given by effective communication. There are many specific competences that are required from the support staff and nurses who work with the patient and the family. “Together for short lives” is a website that helps in understanding palliative care in young adults and children. They provide information about the most recent guidance and evidence based resources in palliative care in young adults and children. The psychological aspect of palliative care in patients can be categorised in dimensions like:-
In palliative care it is not only vital to control the patients symptoms regarding the disease but the focus are on extending the patient life expectancy and improving his quality of life. (Vos MS, 2007) The emotional and psychological wellbeing of a terminally ill person is equally important. This psychological care encourages the patient to express their feelings and present their concerns regarding their disease and care. (Hotopf M, 2009) It is important that while talking and communicating with chronic and terminal ill people. As many of the patients that deal with terminal illness are suffering from stigma from the society. (Rabinowitz T, 2006) Researchers have shown that patients suffering from AIDS, HIV, CANCER have reportedly faced negative evaluation from the society. In this case the patient sees the physical flaws as a negative form of his identity. They may experience rejection and ridicule from their friends and society. (Klikovac T, 2010)These patients should be given psychological counseling along with the medical treatment. The patient should be encouraged to openly communicate about his disease and about his concerns and fears. (Rassin M, 2006) Many patients after the diagnosis of the disease may suffer from denial as seen in the cases of some cancer patients as they suffer from anxiety, nervousness, irritability and anger. These patients may require psychiatric evaluation and the clinicians should help these patients with their morale. (Baile WF, 2010)Ballie in his research that was titled “Empathy in the nurse patient relationship” pointed out how age appropriate palliative care should consist of participation from the patient in his or her own care. Fallowfield in the year 1993 pointed out that while giving sad news to the family of the patient, care should be taken about the patient’s ability and age. Discussion of treatment and caring options should be appropriate to the cognitive level of the patient and they should be given options that they can choose from. It is not only the patient that has to be cared for, in palliative care as family of the patient also requires a affirming and empowering environment. It is essential that they should be given an in depth prognosis of the disease and any questions asked by them should be answered in simple language. (Schapira L, 2008)There are many philosophies and theories that are about palliative care in relation to experiences of families. These theories are about counseling and monitoring the families of the patient that are going through a difficult time of watching a loved one in pain. (Irwin SA, 2008) The palliative care specialists have to ensure that their support includes spiritual, psychological and bereavement support as it lays the foundation for family adjustment, support and coping. Palliative care should be age appropriate and should be focused on the dignity of the patient, the patient family, caregiver and the patient should feel empowered, compassion should be shown towards the patient, respect should be shown towards the family and the patient, advocacy on the wishes that the expressed by the family and patient is needed, and accountability on the part of caregivers, family and even the community. (Rayner L, 2009)
In case of palliative care of a young adult it is essential that the nurses that are caring for a young adult should take care of, firstly it is important that they communicates simply and effectively keeping in mind the impairments and their cognitive stage. They should use verbal as well as non verbal approaches when communicating with a young adult and their family. The health professionals should have knowledge about the various barriers they can face while communicating with a young adult who needs palliative care. (Steinstra D, 2006) The psychological need of a patient who is young is quite different to an older patient and the palliative care should be based on it. The carers should know about the boundaries they have to respect while interacting and working with the family and the patient. (Glantz MJ, 2009) Many times adults from a different ethnic background may feel difficulty in communicating thus in that case the help of interpretation services for the patient and his family should be taken. Many times complex ideas are very difficult to convey to the family and the young patient in that case models and skills are needed that help the carers to communicate with the family. The journey of palliative care should include the sensitive diagnosis and assisting the family of the young adult to cope with the journey and the treatment of the disease. The health carer team has to access resources that can help family in understanding that the setting and atmosphere is safe and confidential for their loved one. Young adults need to be told about their treatment confidently and in a appropriate manner according to their cognitive level. They should be given choices regarding their treatment that they can discuss with their family and can opt accordingly. (G, 2009) Both spoken and written word should be used when dealing with a young adult and his or family to effectively and clearly communicate. It is not necessary that a young adult with a need of palliative care is always in a hospital many times setting may vary such as hospice or community setting. Thus in that case defined guidelines and protocols should be followed according to the information that was collected. According to a report by ACT “ An integrated care pathway for children and young people with life threatening or life limiting conditions and families” it is necessary that the staff involved in the palliative care of a young person should be empathic, responsive and should always be a team player. (I, 2010)
As the demographic profile of Australia is changing due to increase in life expectancy and declining birthrates. The trend towards an aging population is placing increased pressure for a health service that is age appropriately meeting the needs of people. The particular needs of whether it is old or young people or even children are requiring the nurses to incorporate palliative care according to the age of the patient. There are different symptoms that the patients who need palliative care suffer from as some old people may suffer from dementia, confusion and communication difficulties. (A, 2011) Children and young patient may face difficulty in understanding the questions and care that is being given to them. WHO has defined palliative care as the care that relieves that patient from pain and other distressing symptoms associated with it. It may neither postpone nor hasten death but affirms life. They have stressed that palliative care should be about spiritual as well as psychological aspects of a patient life. It should not be limited to patient care but should involve support for the family during the patient illness and their own coping and bereavement journey. (W, 2010) Thus through this definition we can easily understand that palliative care not only emphasizes upon diagnosis of a disease but it emphasizes on the patient needs as well. It is not limited to end of life stages but the quality of life as in case of young adults have to be taken care of. The quality of life for people who have life limiting illness require the support from health services that can provide them with psychological, cultural, physical, and spiritual needs. (Policzer JS, 2007)Thus this reduction in distress and symptoms includes both the patient and his or her family.
A, T. R. (2011). Palliative Care Formulary. Oxford: Radcliffe Medical Press.
Baile WF, B. R. (2010). SPIKES - a six-step protocol for delivering bad news: Application to the patient with cancer. Oncologist , 302–11.
G, C. (2009). Swampy ground: brief interventions with families before bereavement. Oxford: Oxford University Press.
Glantz MJ, C. M. (2009). Gender disparity in rate of partner abandonment in patients with serious medical illnesses. Cancer , 5237–42.
Hotopf M, P. A. (2009). Palliative care psychiatry. Psychiatr , 212–5.
I, K. (2010). Getting it right for children and young people: overcoming cultural barriers in the NHS so as tomeet their needs. London: Stationery.
Irwin SA, R. S. (2008). Psychiatric issues in palliative care: Recognition of depression in patients enrolled in hospice care. J Pall Med , 156–63.
Klikovac T, D. A. (2010). Psychological aspects of the cancer patient’s education: Thoughts, feelings, behavior and body reaction of patients faced with diagnosis of cancer. J BUON , 153–6.
Kuebler KK, H. D. (2007). Palliative & End-of-Life Care: Clinical Practice Guidelines. St. Louis, MO: Saunders/Elsevier.
Policzer JS, S. J. (2007). Management of selected nonpain symptoms of life-limiting illness. Hospice/Palliative Care Training for Physicians. Glenview, IL: American Academy of Hospice and Palliative Medicine.
Rabinowitz T, P. R. (2006). Nothing is wrong, doctor: Understanding and managing denial in patients with cancer. Cancer Invest , 68–76.
Rassin M, L. O. (2006). Caregivers’ role in breaking bad news: Patients, doctors and nurses’ point of view. Cancer Nurs , 302–8.
Rayner L, L. J. (2009). The detection of depression in palliative care. Curr Opin Support Palliat Care , 55–60.
RR, H. (2007). "Clinical pharmacy services in a home-based palliative care program". Am J Health Syst Pharm , 806-810.
Schapira L, V. E. (2008). Lost in translation: Integrating medical interpreters into the multidisciplinary team. Oncologist , 586–92.
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