Terminal Illness: Healthcare Challenges in the Patients Journey - Essay Example

?Healthcare Challenges in the Patients Journey Module - K342 - Polly Lee By Sharon Gallagher P I - B5237358 [Word Count] Introduction For patients, families, relatives, friends and health care professions, diagnoses of terminal illnesses are always pretty devastating as such diagnoses turn their world upside-down as the truth settles in. Despite the fact that such news is not always welcome, there is not much people could do to treat such patients to full recovery. On a rather positive note, a lot of information and expertise is currently available at the disposal of medical professionals and those who care for their dying relatives and loved ones on various treatments, support and care option for terminal illness patients. The terminology, “terminal illness” that emerged and spread in the mid 20th century refers to a condition that cannot sufficiently be treated and is thus expected to end in death after a given period. Among the conditions commonly considered terminal are progressive ones such as advanced trauma-related heart diseases and cancers (Winslow et al., 2005). Terminal diseases are thus conditions that finally end the sufferers’ lives. There are several stages of terminal illnesses that medical professionals should be familiar with. The fact that different patients and their families react differently to news about these stages implies that nurses and other medical professionals should know how to handle and communicate news about each of these stages. The first stage of a terminal illness is the disbelief phase during which most people are shocked and despaired at news about terminal illness. This phase is sometimes marked by feeling of guilt as one suspects he/she has done something wrong to deserve such an illness. The disbelief stage is followed by the stage of depression, which range from mild to moderate in intensity, calling for immediate family and professional support (medical therapy). Since there is no cure for terminal illnesses, only certain types of medical treatments such as treatment to ease breathing or reduce pain could be appropriate. While some incurably ill people accept aggressive treatments to reduce their suffering or in the hope of full recovery, others reject all unbearable treatments that might result in unwanted side effects and worsened condition (Abma et al., 2005). Still. Some opt to undergo untried treatments including radical dietary modifications in the hope that they could prove effective. To help manage pain, suffering, symptoms and to improve general patient life and wellbeing regardless of the management approach used, palliative care is often recommended. To provide the much needed emotional and spiritual support for terminal illness patients and their families, hospice care is highly recommended. Further, supplementary care such as relaxation therapy, massage, and acupuncture are used to manage signs, symptoms and other causes of distress and pain. Analysis of “Patient Journey” An analysis of the ‘Patient Journey’ reveals several challenges that terminally ill patients encounter throughout the rest of their lives. Easily identified in the analysed case of the terminally ill John is the challenge of frequent admissions into health facilities. Accompanying these frequent admission are numerous treatments and therapies such as blood transfusion, which make the patient‘s life more painful and unbearable. In spite of these therapies and treatments, John’s condition continues to deteriorate, rendering him unconscious and unable to make decisions on his own about his health care. John’s family makes the situation worse since they respond to all questions directed at John. This scenario implies that the nurses could not engage the patient directly with questions regarding his health care (Abma et al., 2005). In fact, the patient’s family intervenes whenever the nurses wanted to relieve his pain by administering painkillers. Further, it is the family’s voice and opinion that was heard over John’s on John’s care, making communication a rather serious challenge in the case. The challenges got worse when the nurses realized that the patient’s family did not fully understand the situation at hand, more so the nature of John’s condition and the fact that his end was fast approaching. As a consequence of their belief about terminal illnesses, John’s family had rejected any form of help from community services and sedative care teams that had hoped to help with his care. The family’s religious beliefs were the other challenges, which hindered the nurses and other medical staffs at the facility from keeping John comfortable using end of life drugs. Instead, the family believed that John would be healed through further treatment and miracles. The family even engaged the medical staff in miracle prayers. Having lost two sons, John’s parents believed that only prayers and miracles would save their remaining child. Cultural and religious beliefs were thus among the major challenges encountered in John’s case. This paper identifies and critically examines the learning and the subsequent implications to practice resulting from the exploration of John’s case. Further, the paper discusses how the identified challenges could be addressed and such situations improved. Religiosity as a Challenge to Terminal Illness Nursing is one of the professions in which unique and complex individual personalities and circumstances are encountered, making the forming of close relationships a rather integral part of the profession. Of great significance in nursing is caring for the terminally ill, who often require quite complex treatments. The treatments required are often complex given that terminal illnesses are habitually accompanied by complex emotional, psychological and spiritual issues for patients, their families and nurses. Although encountering such scenarios makes nurses a bit experienced in dealing with terminally ill patients, experience alone is not enough for the competent management of terminal illnesses (Royal College of Nursing, 2003). In fact, experience has been indicated to result in routine practices, which may not be effective on unique cases of terminal illnesses. Though a nurse might be experienced, it is recommended that he/she should use apply reflective practice in using their experience in promoting personal and professional growth when handling terminally ill patients. In this regard, nurses should not only appraise but also analyse the cases and events of terminal illnesses that have in one way or the other affected them to have an improved understanding of their feelings and actions towards terminal illnesses. New knowledge, theories and practices should also be integrated to increase self-awareness and esteem in nurses thus guiding their practice towards promoting effective and individualised terminal illness care in future (Royal College of Nursing, 2003). Thus, the four major steps of the model of reflection in terminal illness care recommended for nurses are description, self-awareness, critical analysis and evaluation. Generally, the four steps account for and address the description of the circumstance and the key issues surrounding a case of terminal illness, the feelings aroused in patients and families and the effects of these feelings on the situation. Also quite critical to the management of terminal illness are the setting of attainable aims, a spiritual base and interpersonal connectedness. Others are light-heartedness, personal attributes, uplifting of memories and affirmation of patient worth. Cultural Challenges John’s case exemplifies the many cases in which one’s religiosity has often been a challenge to terminal illness management. In many books and articles on spirituality, terminal illnesses are considered times during which patients and their families intensely search for the meanings to their sufferings, hence they embrace religion more. In fact, terminally-Ill patient and their families tend to embrace religion tighter when faced with the challenges of such serious conditions. The situation gets worse for medical professional when terminal illness patients are incapacitated or unconscious so that they cannot communicate about their health and care. In such scenarios, parents and/or families impose their religious and cultural beliefs on their ill/unconscious relatives, in the process hindering their treatment or decision-making processes. Many patients, their friends, families and guardians rely on prayers/spirituality when their health or wellbeing is threatened. In recent researches, a connection has been established between prayer and several health care practices and outcomes. In fact, some researches have connected religious affiliations and practices with various aspects of health such as cardiovascular function, immune function and other physiological changes and consequently with better health and longer life. However, nurses and other medical professionals should understand that the role of prayers in terminal or non-terminal illnesses is not to show its effectiveness in healing patients but it has deeper meanings due to its importance to patients’ spirits and destiny. Religion and pastoral care may thus be incorporated in medical practices by the clergy working together with terminally ill patients, their families and nurses. Religious/pastoral care may possibly be included for the purposes of words of comfort before therapies or as last rites. Additionally, pastoral/religious care could help one to forgive or be forgiven in cases of terminal illnesses. Consequent to the big difference in health care experiences and outcomes associated with addressing patients’ spiritual and religious issues, many medical practitioners interweave spirituality and medical education/practice. To medical practitioners, spirituality helps them in finding the true meaning, values and impulses for service that prompted them take up the healing arts. Closely related to the challenge of spirituality or religiosity as seen in John’s case is culture. Terminal illnesses are particularly affected by cultural diversity and beliefs, a situation that emphasises the need for medical professionals to train well and be competent to handle culturally diverse clientele. The first benefit of cultural awareness is that medical practitioners would have the competency to chart the right direction for planning the most appropriate and effective nursing interventions for terminally ill patients at all stages of illnesses (Pickett, 1993). The challenge of assisting terminally ill patients to undergo an “appropriate death” requires that nurses communicate and collaborate well with patients and their families. To address the many and complex cultural beliefs and values, nurses and other medical staff are required to be aware of the immediate cultural pluralism and its impacts on nursing assessment and interventions for terminal illnesses (Pickett, 1993). A broad knowledge on cultural pluralism would thus enable nurses to prioritise needs and allocate resources while caring for terminally ill people. Since loss and grief are expressed in different ways by different cultures, nurses must recognize, understand, and respect each patient’s culture-specific patterns of grief and sorrow with regard to terminal illness. By demonstrating an interest in a terminally ill patient’s cultural and religious heritage, medical workers can establish a good rapport with the family and pave the way for managing such a patient’s condition. Such partnerships, characterised by effective communication with terminal illness patients and their families offer an inimitable insight into their values, spirituality, and relationship dynamics, therefore quite helpful at the end of life (Pickett, 1993). Most medical professionals concur that a good relationship in palliative care is perhaps the most effective method of managing terminal illnesses, more so with regards to the much needed spiritual care. The achievement of the spiritual relationship by terminally ill patients is realized via sound physical care was given, emphasis on journeying together, the presence, the creation of openings and sharing with patients in addition to listening and connecting to the patient. Death and Dying Theories From the case study and other related cases of terminal illnesses encountered in the academic as well as professional fields, it is quite obvious that terminal illness is a rather difficult time for all involved. In fact, recent times have recorded a hitherto unseen development in medical technologies specifically targeting the management of terminal illnesses and the making of terminal patients’ lives a bit more bearable. Unfortunately, one of the consequences of these technologies is that death is no longer viewed as a natural process. In addition to the technological advances, the numerous emotional, bahavioural, attitudinal changes that occur in terminally ill patients, their families, friends, guardians and their health-care staff often result in attempts to save their lives. Fortunately, if health care workers attending to terminally ill patients are armed with the right knowledge, awareness, skills and competencies to help identify and solve their terminally ill patients’ problems, these patients and their families would be helped and their emotional responses and instabilities to accept the reality of death. With the abilities to interpret and explain to terminal illness patients and their families, nurses and other medical professionals are able to create applicable and effective solutions for all (Oliver et al., 2005). Nurses should thus never deviate from following the simplest and relatively straightforward guidelines to enhance their confidence and competence levels and their capability to learn as they practise. Nurses should also realize that although terminally ill patients may muster ways of copying with their conditions, as their conditions moves towards the terminal phase, such patients face new transitions and a lot of challenges. Consequent to these changes in crises and transitions, terminally ill patients and their families and loved ones look at life rather differently. To manage patients and their families at this phase of a life-threatening condition, there are several death theories that nurses may rely own. The most applicable of these theories on death and dying emphasize psychological reactions by which patients cope with their difficult past. These theories postulate that a transitional framework by which medical practitioners are free to develop and implement strategies that improve peoples’ adaptive capacities for the many life changes as death approaches. For instance, at the diagnosis stage, it is important that nurses and health care facilities ensure that patients and their loved ones are convinced that the facility is wholly supportive of their course, more so with regards to palliative care. A five-pillar model (Moo’s Model ) has been suggested by some stakeholders in the health care industry as quite effective in assisting terminal illness patients and their families during the transition periods as the dying phase of terminal illness sets in. First, nurses and other medical practitioners involved should establish a given situation, its meaning and significance (Oliver et al., 2005). That is, the personal implications of a situation to a patient and his/her family. For instance, the diagnosis of a condition may be communicated to patients and families at the right time. In most cases, patients and families feel that time is not on their side whenever terminal illness diagnoses are communicated to them. However, some patients respond calmly to such news, more so in situations where they were already aware of their conditions. The Need for Seamless Care for the Terminally Ill An outstanding practice implication from the review of the “Patient Journey” is that seamless care, which refers to the smooth and safe transition of patients from hospitals to home/community services, should be promoted. The main purpose of seamless care would consequently be to maximize post-discharge improvement, outcomes and well-being. For the terminally ill, a smooth transition would be most welcome for the last phase of their conditions with regards to discharge planning or post-discharge interventions that would improve health care outcomes and assist in reducing disbelief, pain, distress and anxiety (Clegg, 2003). From the onset, nurses should ensure that their facilities and practices promote the collaboration and integration of hospital and community care instead of supporting one at the expense of the other. This latter adversarial stance taken some in the health care industry should be dropped, more so for terminally ill patients. Thus the most vital function for those planning the care and the nurses caring for the terminally ill is to ensure that hospital and community care interact effectively, a feat that cannot be achieved by comparing and pitting the approaches against each other (Nolan et al., 2001). Therefore, a system in which the level of care accorded to the terminally ill strikes a balance between their levels of need and the availability of hospital and community health care resources. Health facilities and authorities also need to come in and erect the structures by which hospital and community care would be readily accessible and quickly offered to the terminally ill people. For quick and accessible seamless services for terminal illness patients, it requires the establishment of exceptional communication among the parties to a seamless service (Oliver et al., 2005). The term seamless IS thus necessary for emphasizing the idea of continuity or close link between community services and hospital care. In fact, if nurses were to ensure that community and hospital services were successfully joined, an impression would be created that there was never any discontinuity between the services. With regards to terminal illnesses, excellent communication that involves some experienced, skillful and resourceful nursing staff working with both the hospital and the community aspects of seamless care is highly recommended (Price, 2006). Health facilities would also save bed space by practicing seamless care as bed usage would be reduced through dedicated community-hospital health care ventures for the terminally ill. Fortunately, terminally ill people and their families have also been shown to favour the balanced community-hospital approach to health care (Nolan et al., 2001). The only major setback to seamless service is the negative public perception that accompanies having terminally ill people in their midst instead of them being hospitalized. Training on Diversity and Equality As is evident in John’s case, the diverse nature of patients keep increasing by the day, implying that medical professionals such as nurses should be skilled and competent enough to effectively deal with clients of diverse socioeconomic and cultural backgrounds equally. Nurses should thus be trained and be conversant with the fact that equality and diversity are highly rated concepts in managing terminally ill patients and all patients for that matter. Treating all patients fairly, their age, sex, gender, religion, sexual orientation, socioeconomic status and political status notwithstanding is thus fundamental to health care for the terminally ill (Hochschild, 1983). Medical workers should accordingly be trained to value the diversity of patients even as hospitals also value the diversity of their staff and the wider community. Nurses should also treat terminally ill patients of diverse backgrounds equally while their hospitals provide equality of opportunity in their services to their clients. Through meticulous learning and training, medical workers, more so nurses, should be equipped to meet all the public service equality by complying with the established equality laws, regulations, objectives and action plans by their hospitals and the health industry regulators (Smith & Ross, 2007). By emphasizing the adherence to these equality and diversity regulations and objectives in training, nurses would be better placed to promote equality of transgender, race, disability, gender, age, religion and sexual orientation (Nolan et al., 2001). Health care facilities’ training programmes should also play an integral role in creating a professional practice environment and an educational community to promote the incorporation of diversity and equality perspectives of all communities and entities in society. Nursing education programmes that provide supportive learning curriculum and environment for diverse students, staff, and faculty should be established. Conclusion The analysis of the “Patient Journey” highlights among others, religion, communication, cultural diversity, equality and training as challenges to managing terminal illness. This analysis not only reveals these challenges but also the possible techniques by which they may be addressed to make the situation more manageable. For example nurses need to recognize and manage the cultural diversity inherent in their clients and offer equal treatment, accounting for the culture- and religion-specific needs and beliefs of terminal illness patients. To acquire such competencies, health care providers and learning institutions should emphasize seamless care, communication, religious and cultural diversity and equality in the training offered to nurses. References Abma, T. A., Oesburg, B., Widdershoven, G. A., Goldsteen, M., and Verkerk, M. A. (2005) Two Women with Multiple Sclerosis and Their Care Givers: Conflicting Normative Expectations. Nursing Ethics, 12(5), 479. Clegg, A. (2003) Older South Asian Patient and Carers Perceptions of Culturally Sensitive Care in a Community Hospital Setting. Journal of Clinical Nursing, 12(2), 283. Hochschild, A. R. (1983) The managed heart: commercialisation of human feeling. Berkley, CA: University of California Press. Nolan, M. R., Davies, S., and Grant, G. (2001) Working with older people and their families: key issues in policy and practice. Buckingham: Open University Press. Oliver, D., Porock, D., and Demeris, G. (2005) Patient and Family Involvement in Hospice Interdisciplinary Teams. Journal of Palliative Care, 21(4) 270. Pickett, M. (1993) Cultural awareness in the context of terminal illness. University of Pennsylvania, School of Nursing. Price, B. (2006) Exploring Person Centred Care. Nursing Standard, 20(50), 56. Royal College of Nursing (2003) Defining Nursing, London, RCN. Retrieved on August 2, 2012 from www.rcn.org.uk/. Smith, E., and Ross, F. M. (2007) Service User Involvement and Integrated Care Pathways. International Journal of Health Care Quality Assurance, 20(3), 27. Winslow, M., Seymour, J., and Clark, D. (2005) Stories of Cancer Patients: A Historical Perspective. Journal of Pain and Symptom Management, 29(1), 31. Read More