Rationale of the project
Palliative care is the multi-disciplinary health care service by which patients with life threatening illness are given treatment to improve the quality of life of individuals and their family members. The main aim is to reduce the suffering of patients by early identification and by providing physical, social and spiritual care to patients. It is necessary to integrate psychological and spiritual elements in mainstream care to enable patient’s to live actively as far as possible until they approach death (Murray et al. 2012).
However, end-of-life care is not easy, and it presents many challenges for clinicians as well as patients. Although clinicians and staff dealing with critically ill patients need to apply core elements of palliative care in health care setting, however it is seen that many clinicians lack adequate training to deal with such patients and guide them in end-of-life decision (Aldridge et al. 2015). Besides this, the values of compassionate care are also missing which significantly hinders end-of-life care. The Triggers for Palliative care report also showed that more than one lakh people in UK do not get the ideal palliative care they actually need (Stephenson et al. 2016). Hence, it is evident from the report that health care professional are failing to identify the needs of patient at the end-of-life care. Due to the presence of these issues in health care setting, this research has became important and it is necessary to investigate the typical issues in palliative care and promote compassionate care in health care setting.
The important competencies in palliative care is to understand the trajectories of patient’s illness, meet psychological, spiritual and social need of patients, be aware of clinical and ethical responsibilities in palliative care and coordinate with inter-disciplinary team. It is also necessary to have appropriate communication skills to handle end-of-life patients (Hughes et al. 2015, May). However, clinicians and nurses have been found to lack training in end-of-life communication and face many challenges in treating dying patients. A research investigating the end-of life education and communication skills in interns responsible for caring of critically ill patients showed that there is little clinical experience with end-of life education in medical college and many interns lacked confidence in assessing and caring for dying patients (Asirwa et al.2016). It can pose serious risk to patients and might lead to loss of dignity of patients. Hence, lack of formal training in end-of life care is the major barrier in palliative care and personal discomfort with death also hampers competent practice in end-of-life care (Jennifer 2016). With the presence of this problem in palliative care, this research project is important to investigate the current development in palliative care and consider ways to improve public health.
Aim of the study
The main aim of the research is to investigate the perspectives of health professional and patients regarding the issues faced in palliative care and identify the barrier faced in end-of life care. It will also propose the relevant actions that can be taken to promote effective health care delivery and integrate values of compassion in palliative care.
The key research questions are as follows:
- What is the perspective of health professional and patients regarding the barrier faced in palliative care?
- What is the current position of palliative care in the health care system?
- What is the individual health professional capacity to achieve competency in palliative care?
- Is set standard of practice present in health institution to determine competency in palliative care?
- How compassionate care can be given in palliative service?
Much research has been done to investigate the issues in palliative care and it has given insight into the challenges faced in caring for dying patients. A research study by Oishi and Murtagh, (2014) investigated the views of primary care providers regarding the provisions of palliative care for cancer patients. The study done in UK revealed that patients expected compassionate care along with adequate end-of life care competencies from primary physicians. However, it was found that gap in expectations remained as there was uncertainty regarding trajectory of illness among care providers. Effective delivery of care to critically ill patients was also hampered due to lack of communication skill to collaborate activities with multi-disciplinary team. The research by Slocum-Gori et al. (2013) was useful in stating the factors that can promote or limit the positive outcome associated with compassionate care. It showed that factors like workplace stress and burnout negatively affects compassionate care intentions in palliative service. Therefore, it is necessary to assess patient’s level of compassionate care to provide relief to terminally ill patients.
To get better ideas regarding the perspective of patient experiencing palliative care and the benefits or burden they face in palliative care trial, a randomized controlled trial was done to examine the impact of palliative intervention on patients. This study was important to determine whether benefit or burden overwhelms the patient. The participants perspective revealed that benefits of the palliative intervention far outweighs the trial burdens and it lead to feeling of empowerment and better coping skills in dying patients (Maloney et al. 2013). One weakness of the study was that it did not give idea on when such palliative care interventions should be initiated. Another significant factor was that it did not gave detail on the level of competencies required in health care professional to provide benefits to end-of-life patients. Research into this will help in knowing what aspects are missing in providing palliative care to patients.
Due the availability of reports on lack of training among health care professionals in providing care to end-of-life patient, it is necessary to investigate what factors impeded effective palliative care. One research study revealed that clinical performance of nurses and physicians gets hampered due to the development of death anxiety among them after facing real situation of death in health care setting. These experiences make them conscious of their own mortality and it lead to uneasiness. The research studied the level of death anxiety and attitude towards caring for dying patients to know the impact on nursing care. The results showed that anxiety level was not high in nurses working in oncology or renal care; however trainee nurses had higher fear of death compared to senior nurses (Peters et al. 2013). The strength of the study is that it helped in identifying the difference in perspective of nurse regarding barrier in palliative care according to experience in this field. It gives implication for developing a death education program to reduce death anxiety in clinicians.
Research question
Many palliative care health professionals and patient also face ethical and psychosocial issues in end-of-life care. Meeting psychosocial needs of patient is the most critical component of palliative care. However the research by Larkin (2013) showed that meeting psychosocial need is a major challenge in palliative care because clinicians are confronted with difficult medical choices which might affect the dignity of patients and their values. Inadequate training in medical staff often prolongs the suffering and dying process of patients instead of giving relief. Therefore, the values of non-maleficence and beneficence are missing in health care providers (DB 2016). This research revealed that palliative care physician cannot effectively blend approaches of psychological and social care in clinical intervention. Thus, it leads to ethical and legal issues in delivery of care. Another important aspect that was missing in the research was the importance of compassion in meeting psychosocial needs of patients (Larkin 2013). Therefore, giving adequate training to clinicians regarding the ethical and psychosocial aspect in palliative care will help in informed decision making and tending to the issues of loss and hope in dying patients and family members.
To find relevant evidence to answer the research question of clinicians and patient’s perspective of issues faced in palliative care and their experience of compassion within hospital setting, a systematic review of literature will be done. This detailed process of searching research articles relevant to the area of study will help in identifying barrier in practice setting and find the gap in knowledge regarding ideal palliative care technique. It will also help in determining the level of competency in palliative care skill and the current standard of practice in health care organization to determine the competency required in health care professionals who are recruited for palliative care. The following are the stages of systematically finding relevant research according to the area of investigation:
Search strategy- Search strategy should be very specific and sensitive to purpose of the study. A balance between sensitivity and specificity will be maintained throughout the search process (Wallace et al. 2013). To find relevant article providing insight into the current position of palliative care in health care system, databases like Medline, PubMed, CINAHL, Pyschifo and Cochrane library will be searched. All the research articles in the period between 2006 and 2016 will be analyzed. The key terms for searching articles are ‘palliative care’, ‘end-of-life care’, ‘issues in palliative care’, ‘barrier faced by health care professional or patients in palliative care’, ‘competency level in caring for dying patients’, ‘compassion in palliative care’, ‘ethical issues in palliative care’, ‘standards in palliative care’ and other related terms. The reference list of relevant article will also be reviewed.
Scoping study
Inclusion and exclusion criteria- The first inclusion criteria will be to analyze only those article that are published between the year 2004 and 2016. Different research method will also be included to get the clinical trial studies, comparative study, cohort studies, scoping review and randomized controlled study to determine the impact on patient’s outcome and quality of life. Other inclusion criteria is to select those articles which provided information on-
- Problems or challenges in palliative care
- Psychosocial and ethical risk to patients in palliative care
- Reference to people who have cancer, oncology patients, AIDS, COPD or other critical illness.
- Organizational and practical issues in palliative care
- Integration of compassion in palliative care.
- Studies that include adult and geriatric patients and their informal care provider
Those research articles will not be taken which gives detail on just basic features of palliative care and patients dying due to euthanasia. Research study on trials of technology, medical equipment or medicines affecting dying patient will not be considered. As the purpose of the study was to investigate about challenges in palliative care, any economic factor will not be considered for the study (Ventura et al. 2014).
Data extraction- At least two reviewers will be recruited who have knowledge in the area of core competencies required in palliative care and who recognize the values and beliefs of palliative care. Such professional should have knowledge about the core concept of life limiting illness and ability to incorporate palliative care approach (Gamondi et al. 2013). The expert reviewer will first analyze the title and abstract of relevant articles and check their compliance with inclusion criteria. If the inclusion criteria is met, then the full text will be screened, however if the abstract do not give adequate information according to eligibility criteria, then it will be excluded. The eligible research data will then be extracted and any discrepancies will be resolved after arriving to a consensus. In case the differences are not resolved, the third reviewer will analyze the article (Ahmed et al. 2004).
Assessment of included research articles- All the research articles were evaluated for quality according to the Standard Quality Assessment Criteria for Evaluating Research articles. This checklist will help in improving reporting of research findings. It will help to optimize identification of weakness in competency standard in health care professional in palliative care practice (Husereau et al. 2013). The scoring system by using the standard assessment tool will help in analyzing the strength of study design according to the purpose of the study. If specific criteria are met, a score of 2 will be given, if partial criteria are met, then 1 score will be given and if no criteria matches, 0 score will be given to the research article. The score will be given after evaluating important sections like title, abstract, introduction, method, results and applicability of the research finding within the context of palliative care (Ventura et al. 2014). As different types of study design will be selected, meta-analysis of data will not be carried out. Finally, all the papers which answer the research question will be sorted into different groups according to key themes or challenges identified in caring for such patients.
Methods
The ethical issues that can arise during conducting research might arise when appropriate guidelines for conducting palliative care research is not followed. The first challenge may arise due to increased scrutiny in informed consent for such research. This research mainly involves studying dying patients; however such people are less likely to give voluntary consent for research. It is also necessary to ensure that interviews conducted in end-of life patients do not cause significant distress to them. It is also necessary to consider the time frame of research as it difficult to get data from dying patients and their bereaved families (Gysels et al. 2013).
The research finding will be beneficial for health care organization, key health professionals recruited for palliative care and the dying patients. It will help health care staffs to get acquainted with the core elements of palliative care. The research finding and recommendation will be passed on to relevant health care organization so that they take relevant actions to impose policy and approach to increase competency level in caring for terminally ill patients. It will play a role in educating and training clinicians and integrating the core constituents of palliative care in their practice (Oishi and Murtagh 2014).
Ahmed, N., Bestall, J.E., Ahmedzai, S.H., Payne, S.A., Clark, D. & Noble, B. 2004, “Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals”, Palliative Medicine, vol. 18, no. 6, pp. 525-542.
Aldridge, M.D., Hasselaar, J., Garralda, E., van der Eerden, M., Stevenson, D., McKendrick, K., Centeno, C. and Meier, D.E., 2015. Education, implementation, and policy barriers to greater integration of palliative care: A literature review. Palliative Medicine, p.0269216315606645.
Asirwa, F.C., Greist, A., Busakhala, N., Rosen, B. and Loehrer, P.J., 2016. Medical education and training: Building in-country capacity at all levels. Journal of Clinical Oncology, 34(1), pp.36-42.
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Hughes, S., Firth, P., & Oliviere, D. (2015, May). Outcomes of an EAPC White Paper on core competencies for palliative care social work in Europe. In 14th World Congress of the European Association for Palliative Care.
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Maloney, C., Lyons, K.D., Li, Z., Hegel, M., Ahles, T.A. and Bakitas, M., 2013. Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention:
Benefits and burdens. Palliative medicine, 27(4), pp.375-383.
Murray, S.A., Kendall, M., Boyd, K. and Sheikh, A., 2012. Illness trajectories and palliative care. Int Perspect Public Health Palliat Care, 30, pp.2017-19.
Oishi, A. and Murtagh, F.E., 2014. The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community:
A systematic review of views from patients, carers and health-care professionals. Palliative medicine, 28(9), pp.1081-1098.
Peters, L., Cant, R., Payne, S., O’Connor, M., McDermott, F., Hood, K., Morphet, J. and Shimoinaba, K., 2013.
How death anxiety impacts nurses’ caring for patients at the end of life: a review of literature. The open nursing journal, 7(1).
Slocum-Gori, S., Hemsworth, D., Chan, W.W., Carson, A. and Kazanjian, A., 2013. Understanding compassion satisfaction, compassion fatigue and burnout:
A survey of the hospice palliative care workforce. Palliative Medicine, 27(2), pp.172-178.
Stephenson, J., Ford, S., Merrifield, N., Ford, S., Merrifield, N., Merrifield, N., Stephenson, J., Ford, S., Ford, S. and Merrifield, N. (2016). Lack of training hindering end of life care, warns charity. [online] Nursing Times. Available at:
https://www.nursingtimes.net/clinical-archive/end-of-life-and-palliative-care/lack-of-training-hindering-end-of-life-care-warns-charity/5087086.article [Accessed 8 Nov. 2016].
Ventura, A.D., Burney, S., Brooker, J., Fletcher, J. and Ricciardelli, L., 2014. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers. Palliative medicine, 28(5), pp.391-402.
Wallace, B.C., Dahabreh, I.J., Schmid, C.H., Lau, J. and Trikalinos, T.A., 2013. Modernizing the systematic review process to inform comparative effectiveness: tools and methods. Journal of comparative effectiveness research, 2(3), pp.273-282.
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