Palliative Care in Northern Ireland - Essay Example

PG Cert. Specialist Practice Nursing (Oncology Palliative Pathway) ONCOLOGY PALLIATIVE CARE Assignment: Semester 2009/10 Pathway: Colorectal Cancer With reference to colorectal care pathways that have been developed in Northern Ireland, critically discuss the claims that this approach has the potential to make cancer services more effective, equitable and accessible whilst promoting a patient/client-centred ethos. Introduction Worldwide, colorectal cancer accounted for 1 million new cases and 500,000 deaths in 2002. Rates of this malignancy vary by country. This malignancy is the second most frequently diagnosed in developed countries. Wide geographic variation in colorectal cancer incidence and mortality rates is believed to be due to lifestyle-related and environmental factors. Another interesting fact related to international variation in colorectal cancer involves the geographic distribution for cancers of the colon and rectum. In locations considered to be high risk, the ratio of colon to rectal cancer incidence is approximately 2:1 or more, whereas in low-risk regions, the ratio is close to one (Wilson et al., 1994). Taking the case of Northern Ireland, between 2000 and 2004, there were 1618 male and 1297 female cases diagnosed annually, and considering the data between 1994 and 2004, the incidence rates are unchanged. Few important facts need to be noted which are very relevant to this assignment. These are, although the mortality rates have declined between 1994 and 2004 by only 1.4% in males and 2.3% in females, during this period, the incidence of colorectal cancer in Northern Ireland were higher than expected in both males and females, specifically in the areas of Newry & Mourne and Cork; Derry and Dublin; and Donegal respectively. While assessing policy implications of a particular region on the overall outcome of cancer care, studies have typically used epidemiological data, which are based on association relations based on observations rather than controlled experiments. These studies on the population of Northern Ireland indicate that the death rates from colorectal cancer in Northern Ireland are higher than rest of the United Kingdom. There are several confounding factors to this assessment, but it is not clear despite early recognition of the problem whether this reflects a greater underlying incidence or a worse mortality (N. Ireland Cancer Registry 2009). As indicated by Kee et al. (1990), Northern Ireland has the highest underlying incidence of colorectal cancer in the United Kingdom. Epidemiological studies have indicated its relationship with dietary habits and affluence. Although the mortality rates have decreased in other parts of Northern Ireland, these decreases have not likely been caused by advances in the treatment of metastatic diseases, which still remains incurable in all parts of the world including Northern Ireland (Kee et al. 1990). In recent years, treatment of cancer has improved in general with improvement in technology and knowledge. However, the changes in incidence rates in colorectal cancer are an important parameter to be considered. This decrease in incidence rates is more likely to be the major contributor to the reduction of colon cancer mortality for the same period across the world. This underscores the importance of prevention as a means of controlling the mortality rates for colorectal cancer. Epidemiologic interventions through community work have been recognised to be an important means of such strategies, and Northern Ireland is not an exception to that (Williams et al., 2007). The government and policies have been changed to suit the needs of cancer care in Northern Ireland. The approach is based on risk factors and their surveillance. A variety of risk factors have been identified: age, family history, environmental factors, and prior colonic disease. These risk factors help to identify subgroups within the general population that are at increased risk for developing colorectal cancer, allowing the level of surveillance to be tailored to the risk profile. Predication of the risk profile is also crucial to direct the development of current and future chemoprevention to the populations with the greatest need. In addition, modifiable risk factors are amenable to primary prevention. While prevention should be the primary goal of such interventions, despite that incidences happen, and in this context, few data are important to note in relation to Northern Ireland which justify improvement in colorectal cancer care in Northern Ireland and this assignment (Campbell Report 1996). During 2000-2004, the incidence rates of colorectal cancer were higher in deprived than affluent areas. This indicated an epidemiological shift. The Cancer Registry in Northern Ireland indicates higher incidence for both Irish males and females in comparison to EU. In the same period of time, deaths due to colonic cancer were 744 for males and 594 for females in each year. With current decrease of mortality rates, therefore, there would be an increase in survival period. Surgery, radiotherapy, and chemotherapy are used alone or in combination in the management of colonic cancer, although those who are over 55 and diagnosed with stage IV or unstaged colonic cancer were noted to have lower treatment rates with receipt of treatment not being governed by gender and deprivation (N. Ireland Cancer Registry 2009). This calls for a palliative management modality in the colon cancer pathway, and the objective of this assignment is to critically examine the claim that cancer care services in Northern Ireland are more effective, equitable, and accessible that before keeping the promotion of patient-centred ethos intact. This will be done in the context of palliative care delivery to the patients with colorectal cancer in Northern Ireland. The cancer services audit 1996 and 2001 on colorectal cancer indicates that cancer services in Northern Ireland have improved in recent years. Historically, it was associated with foundation of Belfast Medical Society. Early success rates were really poor in comparison to recent times, although overall survival rates were showing a trend of being one among the worst in the Western Europe. Over time, as indicated by French et al. (2006), the survival rates have changed for the better for colon cancer. Obviously many of those who would survive would progress to advanced disease and in those advanced stages of the disease, the conventional forms of therapy, such as, surgery and chemotherapy would not work. Adequate care, indeed, in some given situations like this would only call for palliative care. Before going in to investigate the reasons and different parameters of such improvements, it would be worthwhile to know in baseline the disease process in adult colon cancer and examine the holistic need of care in this pathway of journey of such patients (French et al., 2006). As has been indicated these patients will have complex physical, psychosocial, and spiritual needs, and given the current trend in care of the disease per se, it may as well be the case that these needs could have been ignored in the structure of the care. Consequently, there could be questions whether these claims of improvement of care of such patients are just statistical data without any bearing on these patients' journeys on the care pathway. Such an examination of the different parameters of care in the palliative care pathway in colon cancer care is necessary to validate the claims of accessibility, equitability, and effectiveness of care and their improvements with changes in policy implementation is necessary not only to settle the issue, but also for identification of gaps which may need to be fulfilled in order to sustain these improvements in care (DHSS 1996). Colorectal Cancer The patients who develop colorectal cancer would present with symptoms such as rectal bleeding, both intermittent and persistent. The most prominent problem in the elderly who develop this disease is change in bowel habits with increased frequency of stools or loose stools or both persistent over a period of 6 weeks. Sometimes, mucous diarrhea is also associated. The secondary effects are those of iron deficiency anemia and growth obstructing the lumen of the colon leading to manifestations of intestinal obstruction. When the colonic growth is larger, an abdominal mass may be palpable. The NHS recommends that these patients should be referred urgently within a period of 2 weeks for further investigations. Prognosis, staging, and management principles vary according to the age of the patient, and above the age of 55 years, a serious consideration should be given to the management strategy employed. As per NHS and NICE guidelines, at present when the general practitioner suspects colorectal cancer, the referral is indicated urgent in order to be able to expedite the specialist intervention within 2 weeks, and the referral letter must include details of family history, symptoms, and other risk factors. Currently general practitioners have direct access to investigations through rapid access rectal bleeding clinic where flexible colonoscopy and barium enema studies may be needed (Berrino et al., 1999). The cancer service audit indicates that the cancer services in Northern Ireland have improved in the recent years with developments in each area of care namely prevention, early detection, screening, diagnosis, management, and palliative care. There seems to be validity in this claim. Colorectal cancer has higher age prevalence, and in the Northern Ireland scenario, the future predictions indicate a reduction in both incidence and mortality. The structural breaks in the time series of cancer death rates from 1984 to 2004 had been used in a prediction model to indicate improvements in the future time. These improvements are mainly attributed to the active effort and strategies deployed by the Northern Ireland cancer registry. These are being accomplished through establishment of cancer units which work in close coordination with the regional cancer centre at the Belfast city Hospital, which works closely with the Royal Group of Hospitals. In Northern Ireland, these cancer units are main focus for the delivery of services for people with more common cancers. These are just few of the organisational changes that have made an impact on the care outcomes (Houlston, 1995). After the diagnosis is confirmed, the primary care advices, provides support, creates strategies for monitoring of recurrence, and guides for palliative care where indicated. Some of the general practices involve themselves involved home based chemotherapy, which is coordinated usually by specialist outreach nurses. Studies have indicated that shared care improves outcomes. The elements of such shared care include " structured and planned discharge policies; the use of shared (preferably patient held) cards that document patient information (disease progress and drug treatments, as a minimum); locally agreed guidelines specifying the appropriate follow up and delineating responsibilities; and access to rapid referral clinics" (NHS) (Coleman et al., 1999). When considering care in the palliative pathway, a holistic approach is favoured and communication between the caregivers and the patients holds a strong position. The primary care has responsibility to advise patients who have been diagnosed with colorectal cancer about many practical considerations, which include access to social security benefits. In some cases some allowance may be immediately available in these cancers which are predicted to have with a short terminal prognosis in the range of less than six months. For some patients with obstructive tumors in the colorectal regions with the diagnosis, there may be a necessity of colonic bypass through either colostomy or ileostomy making them more vulnerable with increased need for services and further specialised support and care at home and community. This indicates a liaison between the primary care and specialist nurses who can deliver care for the stoma which has an element of psychosocial support inherent in it (Saunders and Sykes, 1993). Palliative Care With the progression of the disease, recurrence, or diagnosis of the disease at a late stage or when the disease is diagnosed first at an advanced age of the patients when no other accepted modalities of the treatment does not work the strategy of management will tend to shift towards palliative care. This has a holistic approach with consideration of the unique and complex physical, social, psychosocial, and spiritual needs of these patients with the intent to improve the quality of their lives. This must be designed to deliver in the community, and ideally, this should be delivered jointly by the primary care team and specialist palliative care services. Few data exist to examine and to guide on the best possible and most effective models of palliative care in colorectal cancer in the Northern Ireland. However, other non-randomised researches on patients in other geo graphic locations in the United Kingdom have shown to improve satisfaction among patients and their overall quality of life when they are engaged and kept involved fully in such care processes since they can have involvement, total understanding of the progression of their sinister disease where they can exercise their informed choices in the treatment options. Shared care cards and home care teams with specialised palliative care services can accomplish these easily. The main priorities in palliative care in colorectal cancer that have been delineated are pain management, ascites, jaundice, constipation, and nausea. It is very important to attempt correcting these symptoms as these distresses caused by constipation or nausea as by pain. Full explanations of these conditions and signs such as jaundice are reassuring in most cases. There are now specialist home care teams who have access to specialist equipment-such as bed aids which can preserve pressure areas and skilled counsellors for patients and their families. This enables all patients wish to remain at home, which are important aids to preserve resources (Kee et al., 1990). There is thus evident and continual progress in the management of colorectal cancer. However, despite these developments, there are criticisms that currently available treatments are difficult to be provided to the patients who could exercise maximum benefit from them. There is thus an importance of understanding how these variabilities in colorectal cancer treatment and outcomes is Northern Ireland can be reduced to a minimum. A large body of literature has documented clinically significant variability in the quality of care provided to the North Irish patients of colorectal cancer. Many patients with colorectal cancer undergo surgery, and several studies have demonstrated that among patients undergoing surgery, the postoperative morbidity and mortality increases with the advancing age of the patient. While the impact of age on the control of tumor is uncertain, it is a matter of fact that higher categories of age had adverse impact on the morbidity and mortality patterns within a community of colorectal cancer patients. While the improvement of therapeutic modalities is adding to the survival rates, apart from other parameters and modality-associated morbidity, increased age also contributes to these morbidities. Therefore, the highlights of any pathway must be care directed to the improvement of the quality of life of these individuals through a holistic approach while the patient stays in the community and care is provided there through the approach taken by the health authorities in the Northern Ireland. Moreover, there is a documented decreased colon cancer specific survival with advancing age. This factor in itself justifies the need for palliative care plans to be seriously incorporated in the care pathway (Guidelines for the Management of Colorectal Cancer, 2001). World Health Organisation has defined palliative care to be an "approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification" through assessment and management of problems associated with the condition such as physical, psychosocial, and spiritual (WHO, 2005). This is also a customised and holistic pathway of care with attention to detail pertaining to results of meticulous assessment through a sensitive, ethical, and careful therapeutic approach. This becomes particularly important in colorectal cancer management since the core ingredient of the cancer pathway in North Ireland since the model is based on community care, and one of the hallmarks is the quality of presence of the caregiver. This facilitates the discernment of the ongoing needs of the family and the patient as they evolve with the terminal stage of the suffering. The emphasis is being alongside. This is in concordance with the Campbell report "Cancer Services; investing for the future" (1996) which states that cancer services should be oriented to the patients' needs, and all patients must have access to the identical high quality of care. A specialised evidence-based multispeciality care and its continuous evaluation through regular audits would be the ideal method. The stress on the palliative model is definitely a drift from the biomedical concept of cancer care, and there is a necessity of wider horizon and perspective in care delivery if the goal is to attend to the suffering and biology of the disease both. Thus the concepts of care and cure, quality and quantity of life which evolve around the family and the patient and other care givers must be incorporated in the care plan. Assessment of care needs would definitely involve also those who surround the patient as a unit of care, and the care would have the objective of supporting the optimal quality of life that through this continuum of care of the whole would foster healing. This also indicates a response towards integrity and wholeness (Cassell, 2004). While examining the North Ireland Cancer care delivery systems to the colorectal cancer patients, it would be evident that the palliative part of the pathway deploys the philosophy of palliative care very effectively, although there are still certain snags. Currently, the framework that is utilised is that of community based care where the care would be humanised, personalised, and de-institutionalised. In this model, the primary care providers play a very important role, and community based cancer units connected to the cancer centres serve as the centres for patient contacts. This model is facilitated by the professionals who have been trained and has specialised in different aspects of cancer care and are supposed to be working together in a team. The cancer units are designed to provide care to colorectal cancer, and when necessary at any stage of the management the shared care model between the cancer centre and cancer units is deployed. The idea behind the cancer units is to provide comprehensive cancer care to maximum number of patients with better access since the care is provided closer to home. However, this model cannot satisfy all the needs since some of the treatment modalities such as radiotherapy cannot be provided in the cancer units due to need of expensive equipments and the need for accommodation. The service framework has set standards that involve the patient pathway in a holistic manner from prevention to survivorship with the goal to improve the experiences of the patients and the management outcomes across the pathway of patient journey. These would improve the health and social wellbeing and safety and quality of care. This can be achieved only through improved partnership of working through partnerships in order to safeguard vulnerable individuals and groups of patients suffering from colon cancer. The ideal situation would be achievement of improvement of health and lives of the patients suffering from colon cancer through more service availability. Service availability and access are key components since this increases inclinations to use such services, which can ensure better outcomes of the overall health. The NI cancer registry has provides excellent services in the recent years through planning and evaluation of clinical management and treatment of colon cancer utilising accurate and unbiased information (Campbell Report 1996). The changes that took place in colon cancer management are significant since this employed the method of rationalisation of clinical services for colorectal cancer between the cancer centre and the cancer units. However, it has been predicted that this can be difficult due to geographic locations and differences. There are 18 hospitals which provide acute care to these patients. Following implementation of the Northern Ireland Regional Strategy for Acute Hospital Services, the Acute Hospitals Reorganisation Project and the Report of the Cancer Working Group, it is expected that this process may be hastened further to improve the outcomes further. While a system for clinical management is already there in place, it is difficult to implement superspecialised treatment to only colorectal cancer patients since it would comprise of a small proportion of practice for the majority of the physicians and surgeons. This indicates there could be gaps in the biological modality of the management only. There are still gaps reported in the tertiary level of training according the outlined and necessary training experiences. Therefore inexperience and lack of time to that can be devoted to specially the colon cancer patients may compound the problem further demonstrating a lack of clinical commitment of the health professionals. The outcome of surgical treatment is directly related to the palliative care provisions since disease and procedure related mortality and morbidity rates are dictated by the expertise of the clinicians. This means lower recurrence rates, fewer stomas, further need for chemo and radiotherapy all may affect the quality of life of these patients, and although this indicates the need for more specialised community nursing care specially directed to palliation, still there is a lack of support groups and enterostomal therapy nurses. Moreover as indicated about the need for multidisciplinary service management of colorectal cancer, due to lack of training and staff, this model of care is limited to a small number of sites. This limitation is applicable to both specialist clinical professionals and specialist support services. These include among all, the enterostomal therapy, nutritional support, palliative care and other services (Fitzpatrick et al., 2004). Conclusion Cancer in Ireland 1994-2004: A comprehensive report suggests that there are improvements in different parameters of colorectal cancer management in Northern Ireland, however, there is a noted no significant difference between the age-standardized relative survival rates, which includes patients with unspecified diagnosis, further substantiating the claim that there is a need for improvement in palliative care services. Despite this lag, it can overall be stated that following the launch of North Ireland Cancer Services there are noted improvements in the comprehensiveness and effectiveness of these programmes since this improved the access to the care services and eliminated discrimination in service delivery in all aspects of care. There are still certain snags in the palliative care delivery however seeing the data and statistics it is evident that long-term survival has increased, mortality is decreased and care delivery is not discriminated according to the stage of the disease or economic status of the disease. However, it is recommended that new units and more trained professionals are needed to improve the scenario further. Reference Berrino F, Capocaccia R, Estve J, Gatta G, Hakulinen T, Micheli A, et al, eds. (1999). Survival of cancer patients in Europe: the EUROCARE-2 study. Lyons: International Agency for Research on Cancer, 1999. (Scientific publication No 151.) Campbell Report (1996). 'Cancer Services - Investing for the Future'. Department of Health and Social Services, 1996. Cassell EJ. (2004). The nature of suffering and the goals of medicine. 2nd ed. New York: Oxford University Press, 2004. Coleman MP, Babb P, Damiecki P, Grosclaude P, Honjo S, Jones J, et al. (1999). 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