Palliative care is well defined by the World Health Organization, and is “The active total care of patients whose disease is not responsive to curative treatment.” In 21st century, many plans have been designed to enhance the quality of life for the survival of affected patients. But a reliable epidemiological study is required for evidence and assessment of expected survival of the patients.
Main objective of palliative care is to achieve the quality of life for the patient and his family. Since the building of first ever modern hospital in 1960, the number of incurable cancer patients and palliative care units have been increased manifold, especially in countries having sufficient funds for health care. But qualitative and quantitative scientific research is still unable to meet the expectations and fundamental goals.
History of Palliative Care
White et al (2004) reported flaws prevailing in remote areas of Australia and public facing life threat disease. Disease progression is high in absence of palliative care and patients died in loneliness away from their homes. Furthermore little research is available regarding these remote communities which consequently challenged by palliative care patients. The situation is much different in comparison with urban area which is unjustified. This devaluing and underneath resourcing of remote area palliative care and research, the discreet response from health and social policy is inequity in social background. However, keeping in view social and health policy, improving access to palliative care services conveys some requirement need to be addressed in the surrounding issues and expenses. Moreover, it enabled more cultured and geographically appropriate palliative care research in remote areas. It is accompanied by the potential to improve clarity about needs and issues with the possible increase in costs. Though few areas have access to devoted and soothing care services, but they declared it persistent underprivileged and deprived social environment for native Australians living in remote areas even.
Radbruch et al (2002) reported in his article that the resolved question about permission for omission of therapy is not much clearly documented in Germany. They found that rejection of recovery for any patient was not documented in some units and 78% of patients in other units. In the different units consent on omission between varied from 0% to 88% of patients for additional chemotherapy .They indicated that documented direction were only 18% in Germany compared to United States which was up to 79% of patients. In addition, more specific research and setting of the fundamental documentation is required in this area in Germany for better assessment. The survey showed high rate of outcome of inpatient palliative care and large percentage of patients with good symptom control, minimal or no residual pain and high satisfaction with therapy. The relationship between assessment by staff and self-assessment were available only for few patients, and showed moderate association of outcome ratings with the omission of a higher correlation for pain relief.
In late 20th century, United Kingdom started providing death service and this idea got inspiration for improved care for fatally ill patients. One of the basic philosophies is to provide relief of stressful symptoms, the incorporation of mystical and psychological aspects of care, and the provision of a supportive system to ill patients. In addition, reports have been considered to access and the provision of sanatorium care to all fatally ill patients rather than only cancer patients. The philosophy and goals of palliative care are unquestionable. Efforts have been made to fulfill rules within a severe setting (Willard, 1999).
Current Scenario of Palliative Care in Australia
Palliative care has been developed across Australia in variable ranges and ways by healthcare professionals working in general practice settings, hospitals and clinics. Cancer patients constitute the mainstream of the palliative care patient inhabitants in Australia (Mitchell, 2011). Brooma et al (2013) outlined palliative care units and reported availability of superior palliative care units with specialised and comprehensive facilities both for in-patient and community based palliative care. More than 80% of patients are initially referred to such units by medical specialists instead of general practitioners. In some cases, patients rely on personal specialist due to their established relationship and for limited palliative care requirements. Their study focused on a specialist palliative care unit situated within a particular private hospice run government funding and community contribution.
Role of Emotion in Palliative Care
Palliative care is one area of medical science where emotions play a significant and inevitable role. Most often, the referral to a specialized palliative care system is seen as a step towards ‘letting go’. This is why transferring patients under active treatments to palliative care is an emotionally challenging and complex clinical practice. However, sociological research on emotions and forms of sentimentality with reference to discussions about referral to palliative care remains a hitherto unexplored domain (Brown, 2009). Taking into consideration various academic disciplines, though they might differ tremendously in their specializations, it is possible to gain some insights into the intricacies of how end-of-life discussions can be embedded in emotional and inter-subjective challenges. For example, the clinical trajectory adopted by some doctors in the case of small cell lung cancer patients is a good illustration of medical activism that is designed to aid them as well as their patients into channeling treatment procedures into a smaller, less emotionally charged path that has more optimistic end points. Such practices also make it clear that there is a potential possibility of optimism coproduced as a result of a collusion founded in emotionality and rationality in medical contexts. Given the potential for emotion and sentimentality in palliative care related discussions, how is the need for such a specialized system of care tropicalised and dealt with by doctors? Surprisingly, no significant studies have been carried out in this area (Brooma et al, 2013).
In short, each of the factors contributes to a complex interpersonal as well as highly charged situation. In such conditions, most of the medical specialists take approaches or make decisions patient based on the subjectivity and emotional mindset of the patient. In most cases, subjective influences have a subtle influence on the treatment decisions specifically, the timings, choices made and the route or trajectory taken. However, it is not applicable to medical practitioners who have a distant relationship or are dispassionate with the patients as they take decisions based on the condition and not based on the objective benefit or the quality of life.
Suggestions for Good Palliative Care Services in Future
Different parameters and suggestions should be developed for good palliative care services in future to meet the scarcities and needs. A framework can be formulated for good and effective palliative care to meet the challenges. A comprehensive and centered approach is need of the time to meet future challenges of palliative care patient as mentioned below:
- Develop effective information practices among staff and patients palliative care units.
- Need to conduct specific research in palliative care.
- Provision of basic elements based on community initiative as a group.
- Avoid over sighting of therapeutic options without the consent of the patient palliative care unit.
- Avoid decisions regarding end of life and develop aggressive directions.
- Advance documented directions should be present in palliative care units.
- Careful documentation should be exercised for effective goals in palliative care units.
- Need to develop correlation between assessment by staff and patients at the time of admission.
- Use specific and advance instrument for better correlation and staff ratings in palliative care units.
- The implementation of the framework by assessment questions, guiding principles, and strategies for interpretation of framework suitable for the local needs of the community.
- Appointment of competent facilitators for identification and development of essential resources both material as well as inspiration for the expansion of palliative care network.
- Provision of initial leadership to start the building process, and keep liaison with the key stakeholders.
- Facilitator should be accountable for getting the community group together and creating awareness palliative care.
- Evaluation of guidelines to maintain and construct good services.
Role of Palliative Care in Residential Aged Care Services
For implementation of customised care planning for residents who are dying in aged care units, some programs were written like “Palliative Care Quality Resource Guide” known as toolkit. This toolkit provides help to assist health care providers to apply the National Palliative Standards and helping improved quality service to end of life care. More comprehensive study is still required to develop a mechanism for dying in sophisticated manner. Nurses need to acquire skills and knowledge for retrieving professional development by workshops and seminars. Skilled professionals working in palliative care units are another choice of learning for nurses (Allen et al, 2008).
History of palliative care showed that people living in remote areas are facing comparatively more problems than modern urban areas. This study emphasised that prevailing conditions in palliative care units in Germany are far below than United States and United Kingdom. Palliative care has been developed across Australia in variable ranges and ways by healthcare professionals working in general practice settings, hospitals and clinics. A framework can be formulated for good and effective palliative care to meet the future challenges.
Alex Brooma, Emma Kirby, Phillip Good, Julia Wootton , and Jon Adams,(2013), ‘The art of letting go: Referral to palliative care and its discontents’, Social Science & Medicine, Vol. 78 pp. 9-16.
Brown, R., Dunn, S., Byrnes, K., Morris, R., Heinrich, P., & Shaw, J.(2009),‘Doctor’s stress responses and poor communication performance in simulated bad-news consultations’, Academic Medicine, Vol. 84,pp. 1595-1602.
Carole Willard (1999), ‘Caring for patients and relatives: an appraisal of palliative care philosophy European’, Journal of Oncology Nursing, Vol.3,No.1 pp. 38-43.
Kate White, David Wall, Linda Kristjanson,and Edith Cowan University(2004),‘Out of sight out of mind: reframing remoteness in providing palliative care in remote Australia Collegian’, Vol. 11,No.4,pp.29-33
Lukas Radbruch, Gabriele Lindena, , Martin Fuchs,KarlNeuwöhner, FriedemannNauck and Schulenberg, , and Working Group on the Core Documentation for Palliative Care Units in Germany, (2002), ‘What Is Palliative Care in Germany? Results from a Representative Survey’,Jr. of Pain & Symptom Mgm., Vol. 23 No. 6 pp.471-487.
Mitchell, G. (2011), ‘Palliative care in Australia’, The Ochsner Journal, Vol. 11,pp. 334-337.
Sonia Allen, Ysanne Chapman, Margaret O’Connor, and Karen Francis, (2008), ‘The evolution of palliative care and the relevance to residential aged care: Understanding the past to inform the future’, Collogian,Vol.15,pp.165-171.