Dementia Journey Approaching End of Life - Essay Example

DEMENTIA JOURNEY APPROACHING END OF LIFE Department TABLE OF CONTENTS TABLE OF CONTENTS 2 3 INTRODUCTION 4 CARE FOR PEOPLE WITH DEMENTIA DURING END OF LIFE 5 Pain Management 5 Intercurrent Infections Management 7 Management of Nutritional Needs 7 Psychosocial and Spiritual Support 9 SUPPORT SERVICES, VIEWS AND EXPERIENCES OF PEOPLE WITH DEMENTIA 11 DIVERSITY AND END OF LIFE CARE IN DIFFERING SETTINGS 12 Acute Settings 12 Residential Care Environment 14 Home settings 15 DECISION MAKING AT THE END OF LIFE 15 Family Roles in Decision Making 17 CONCLUSIONS AND RECOMMENDATIONS 18 REFERENCES 20 ABSTRACT The prevalence and incidence of dementia increases with the aging population and is often associated with advanced immobility, severe physical changes, poor nutrition, increased susceptibility to infections, incapacity for self care, debilitation, skin breakdown and other complications. This paper focuses on how people with dementia are supported during end of life and how these services and support encounter different challenges. As outlined in this paper, the main areas of clinical concern; pain management, intercurrent infections’ management, meeting nutrition needs, provision of psychosocial and spiritual needs are important aspects of end of life care for people with dementia. The second part of this paper discusses the views and experiences of people with dementia and how the existing gap in policy and nursing practice affects support and care for persons with dementia. This paper ends by discussing different care settings and the roles of families’ involvement in decision making to improve quality of life during end of life care for persons with dementia. INTRODUCTION End of life care refers to the healthcare given to people with advanced, incurable, progressive illness by helping them to live as well as possible until they die (Raymond et al, 2014 p.101). Dementia is one of such illnesses thus but people with dementia often experience stigma because it has no cure (Davies et al, 2014 p.920). however, experts have recommended a person-centred approach or people with dementia and their families since this approach ensures care is focused on their changing needs as well as their cognitive ability (Roberts & Gaspard, 2013 p.30). While dementia condition progresses, discussions with families and caregivers on stigma are important in assisting people with dementia achieve realistic expectations (van der Steen et al, 2014 p.200). Studies have also suggested that many care givers do not only view dementia as a terminal illness but also identify dementia as a cause of death (Dempsey, 2013 p.229). Planning for end of life care for people with dementia is therefore important since it ensures collaboration with care team and families in providing quality life experience. Approaching end of life is often associated with deterioration in cognitive ability, advanced immobility, severe physical changes, poor nutrition, increased susceptibility to infections, difficulties with self care, debilitation, skin breakdown (Goodman et al, 2010 p.333). In this regard advance care planning and the subsequent preparation for end of life is vital to ensure appropriate care is given in a timely manner rather than being addressed during a crisis. This paper focuses on how people with dementia are supported towards end of life including clinical care, psychological and spiritual care as well as how different settings affect collaboration and decision making. The role of family members and their involvement in decision making as well the gap that exists between nursing practice and policy will also be discussed. This paper concludes by making recommendations for mediating the gaps between the policy/literature and the nursing practice in all settings necessary for high quality end of life care for persons with dementia. CARE FOR PEOPLE WITH DEMENTIA DURING END OF LIFE People with dementia often experience various issues irrespective of the site of care whether home or residential care. These issues are complex and with various multiplicities of cultural, ethical and religious experiences about them. This forms the framework for the provision of care for people with dementia towards end of life. Research has shown that in order to provide direction and offer effective care at this time in dementia care, multidisciplinary approach is important (Street & Love, 2005 p.184). It is important to address clinical issues, psychosocial and spiritual support, decision making and involvement and the role of family in the provision of care (Higgins, 2013 p.26). It is also important to evaluate the settings upon which provision of care takes place as well as the education for the care providers (Herr et al, 2006 p.178). The following section is a presentation of the main areas of concern; pain management, intercurrent infections’ management, meeting nutrition needs, provision of psychosocial and spiritual needs and resuscitation. Pain Management Pain is one of the major concerns for people with dementia as it could adversely impact on the quality of life of a person thus result into reduced social interaction and sleep difficulties (Reid et al, 2012 p.13) as well as increased functional impairment (Thune-Boyle et al, 2010 p.279). However, research has shown that pain is often undetected and thus not treated (Roberts & Gaspard, 2013 p.34). In a study by Davies et al (2014 p.389), the majority people expressed pain complaints but were not able to be detected by the nurses. This shows that the prevalence and the level of pain for people with dementia are not often understood. According to a study by Thune-Boyle et al (2010 p.279), people with dementia often experience high intensity of pain compared to those with intact cognition. Nevertheless, Pain management for people with dementia is vital despite the conflicting statistics about pain ((Livingston et al, 2012 p.643). Analgesics have been used in many healthcare settings in pain management and have been shown to improve pain symptoms (Regan et al, 2014 p.41). Research has shown that frequent use of pain medication is more effective in pain management (Livingston et al, 2012 p.645). However, adults with dementia often experience difficulties with pain management even with medication. Studies show that better pain management for people with dementia is effectively achieved when comprehensive pain assessment is conducted (Kinley & Hockley, 2014 p.83). This is particularly important since people with dementia often experience difficulties not only in reporting pain but also its severity (Dempsey, 2013 p.230). Pain management is therefore still a clinical issue that affects quality of life and support for people with dementia during end of life care. Experts have recommended pain assessment strategies such as observations of behaviour, talking to families and care providers to assess pain (Thuathail & Welford, 2011 p.41). However, effective assessment of pain is often challenging in residential facilities since unskilled frontline workers are not well trained to care for people with dementia (Bloomer et al, 2014 p.736). This would support evidence from my practice experience when I was a Senior Care Coordinator, as no training was given to assess pain, In this regard; there is need for increased training, high-level education for frontline workers and changing of organisation’s policy to ensure regular pain assessments are used for people with dementia. Intercurrent Infections Management People with progressive dementia have the risk of developing respiratory, Urinary tract infections (UTI) and gastrointestinal infections (GTI) due to deterioration of the immune system. Research has shown that during the end of life for people with dementia, other complication may also arise, such as inability to mobilise, immune response, functional impairment and difficulties with swallowing (Bloomer et al, 2014 p.735). The above complications are prerequisites for the development of other intercurrent infections and must be managed well. Many studies have supported vaccinations as an important way to reduce the risk of intercurrent infections. Most intercurrent infections managed through vaccines includes; pneumonia and influenza (Herr et al, 2006 p.179). Vaccinations and hygiene remain important interventions (Herr et al, 2006 p.189). As stated by Thune-Boyle et al (2010 p.275), proper understanding of the adverse effects and the clinical effects on quality of life is very important before administering any antibiotics. This evidence supports my practice experience as a Home Care Manager, as many people with dementia experienced side effects such as sickness and diarrhoea. Other challenges experienced were that many older people became immune to most antibiotics, as they have experienced intercurrent and recurrent infections. Other challenges in the community are medications need to be given at particular times and these times are not commissioned, thus the person with dementia not getting their antibiotics, causing further infections and hospital admissions. Management of Nutritional Needs Effective management of nutritional needs for people with dementia is important in improving their quality of life. When approaching advanced stages of dementia it’s often associated with nutrition threatening issues such as dysphagia, swallowing difficulties and refusal of food thus will most likely require full hydration and feeding assistance (Palecek et al, 2010 p.580). Lack of proper nutrition is linked to increased malnutrition that may result into increased complications such as pressure sores, infection, aspiration and pneumonia. This can result in life threatening conditions for people with dementia and is likely to lower their quality of life, increase pain and make them susceptible to even more dangerous infections as the dementia progresses. One of the best nutritional interventions that have been proposed for people with progressive dementia is to implement tube feeds (Jennings et al, 2014 p.254). Tube feeds refers to the provision of nutrition through Percussions endoscopic gastronomy (PEG) tube or the nasogastric tube. This intervention is expected to increase the nutritional wellbeing of the persons with dementia thus lower the risks of malnutrition. The use of feeding tubes however, has its own challenges and implementation may only be theoretical. The decision to initiate feeding tube at the time at which feeding tube should be initiated is one of the most difficult dilemma for both the doctors, families and residential organisations caring for people approaching end of life (Johnson, 2005 p.S39). According to Kalish (2005 p.213), feeding tube placement is often associated with certain diagnoses for persons with advanced dementia and includes: urinary tract infections, pneumonia, and malnutrition, dysphagia and aspiration pneumonia. However other studies have challenged the use of feeding tubes since it does not reduce aspiration pneumonia, provide comfort, improve functional status, or prevent pressure ulcers (Kane, 2003 p.33). The use of tube also require high degree restraints to prevent persons with dementia from pulling out the tube, increased burden of intubation for people with diarrhoea and other adverse health effects. While it is clear that effective nutrition is vital for people with dementia, it is important to note that the available interventions such tube feeding face various challenges in nursing practice. According to Kaufman (2005 p.109), the use of tube feeds is highly ethnically and emotionally charged issue thus the use of tube feeds is still a quite commonplace. Care givers and family members should therefore explore various alternative ways to meet the nutritional needs of persons with dementia. This calls for training and education for family members, doctors and care givers as well as discussion and consultation among the palliative care team members. Psychosocial and Spiritual Support Studies have suggested that there is perception that approaching end of life is equated to progressive loss of self (Jolley et al, 2010 p.321). This has greater adverse impact on influencing the overall response to people with dementia which could include lack of acknowledgement, dehumanisation and low self-esteem for person with dementia. Caring systems, Interpersonal relationships dictate that personhood can either be nurtured or killed depending on whether a person is valued or not (Marquez Gonzalez et al, 2012 p.184). Clinical practice focuses on enhancing an individual’s quality of life by reducing the levels of suffering, providing good person centred care and treatment like any other person and not just only the aspect of physical health. The psychological and spiritual supports are needs beyond the physical ones and include: reducing loss of a relationship, fears for marginalisation, being vulnerable, isolation, loss of opportunities and stressful conditions (Marquez Gonzalez et al, 2012 p.184). The above conditions are dangerous for people with dementia and can result into undue distress and suffering thus lower the quality of life especially as the dementia progresses. A lot of studies have focused on the dimensions of supporting people with dementia with psychological and spiritual needs, but little research has been done to address the needs of people with dementia at the end of life. Moreover, this is a very important need for people approaching end of life since it provides hope and reduces distress for them. One of the challenges of providing psychological and spiritual needs to people with dementia is that many care facilities are designed to operate within a medical care model that does not incorporate strategies to address the psychological, spiritual and the social needs of the residents (Shanley et al, 2011 p.332). Residential homes are also not equipped well to provide the spiritual support thus the support is relegated to religious gatherings rather than addressing the fundamental needs of the residents. According to a study by Beck et al, (2012 455), many family members reported that their relatives did not receive adequate emotional support thus suffered serious psychosocial pain. However, this can be improved through social interaction and increased positive interrelationships between people with dementia approaching end of life and care givers beyond the expected routines of care (Kumar & Kuriakose, 2013 p.130). Other relationships and sensitive activities that can promote psychosocial wellbeing include interpersonal touch, sensory stimulation, gentle massage and hugs (Brandeis et al 2008 p.144). Studies have shown that the physical presence of other people improves comfort Bottrell et al (2001 p.313). The study also highlighted increased supervision for nurses increased and transformed the relationship from task-oriented care to relation centred care. Communication through the use of humour, touch and empathy, respect for individual preferences and individualising care for people with dementia such as valuing person’s preferences such as food and activity. Evening and morning routines are important interventions to the provision of psychosocial support. It is therefore evident that there is a gap between research findings, policy and clinical practice. The above findings on psychosocial and spiritual support show a disconcerting picture of the experiences approaching end of life for people with dementia. While physical needs for people with dementia approaching end of life are met to some extent, spiritual and psychosocial needs are not adequately met within the care facility or even within acute setting. SUPPORT SERVICES, VIEWS AND EXPERIENCES OF PEOPLE WITH DEMENTIA Scholars have often stressed the importance of relevant skills and knowledge approaching end of life care and dementia care for providers. However, analysis of care facilities to include acute settings show that many providers and care givers lack the necessary skills required to offer the highest possible quality of life experience for persons with dementia (Beck et al, 2012 p.455). Research show that even though the most likely professionals who guide end of life care discussions are nurses and physicians, most of them lack the right interpersonal skills and knowledge to effectively engage in conversations. A study by Robinson et al (2013 p.406), on the experiences of nurses and people with dementia found that staff felt warmly towards the residents and were able to recognise when they were near end of life. However, caregivers and doctors did not see themselves as a team thus there was poor communication between them and the relatives about approaching end of life (Shanley et al, 2011 p.336). Research also shows that even though caregivers know the existing religious rituals surrounding end of life, they frequently did not understand them well thus were not able to offer good care for people with dementia. The above findings show that staff require more education with respect to provision of support and care for people with dementia. Education and support about the implementation of advance care plans approaching end of life in dementia is essential (Robinson et al, 2013 p.406). Cultural, religious and spiritual issues around end of life are very important yet they were not taken seriously within the care settings thus training on this issues could improve practice. According to Shanley et al (2011 p.336), this is the gap that exist between what is known within practice and what actually takes place within care facilities. Support for doctors and nurses are also important since it enables them implement advance care plans knowing that they are supported. According to Robinson et al (2013 p.407. It is also important to note that staff teams need to know, both the religious, ritual practice and cultural ideas for the residents towards end of life. DIVERSITY AND END OF LIFE CARE IN DIFFERING SETTINGS Quality of life that a person experiences approaching end of life is directly related to the kind of setting that persons with dementia is cared for. As stated by Chan & Kayser-Jones (2005 p.30), while dementia is a progressive illness to a great extent which affects the end of life experience, the place of care can also affect the same thus different people with dementia deserve different settings. The fundamental concerns in providing support approaching end of life for people with dementia is to meet their unique needs and the knowledge the care providers in respect to those needs. Acute Settings Acute settings are care settings that provide support to people with end-stage dementia. End-stage dementia is the last days of end of life journey and is mainly characterised by increased levels of infections such as pneumonia, pulmonary infections, difficulties in breathing and influenza among others (Chibnall et al, 2004 p.425). Acute settings are not always ideal for people with dementia whose cognitive abilities are no longer intact due to infections such as pneumonia. Those in these settings are therefore cared for intensively and there are higher referrals to specialists. Studies have however suggested that people with dementia who are being admitted to acute care settings could have been cared for well within a care facility (Cohen-Mansfield et al, 2002 p.569).. This would support my practice experience as a Home Care Manager, as many people with dementia were often sent to hospital by G.Ps, when the person presented with infections such as chest or urinary tract infection and was usually by out of hours doctors who did not necessarily know the patient, or visit the patient, but gave instructions over the phone due to out of hours pressure in the Health Service. Acute care settings have its own challenges with respect to providing support for people approaching end of life. According to Daaleman et al (2008 p. 89), there are various moral and ethical questions that are raised with respect to death, dying and dignity as well as the roles these environments play in shaping the end of life experience for people with dementia as well as support to their families. A transfer into acute care settings often disrupts the health team as well as the environment of care and can result into increased falls, confusion, and inconvenience and may not promote a person-cantered care at end of life. Moreover, many people with dementia approaching end of life are often taken to acute care setting as a result of infections discussed earlier in this paper thus decision making may be a challenge due to breakdown in the interrelations between care givers and relatives and the doctors (D’Agata et al, 2008 p.360). Nonetheless, acute care settings still provide support for end stage dementia during end of life thus caters for the needs of persons with dementia who cannot be cared for in a residential facility environment. Residential Care Environment Residential Care facilities are one of the most common places for people approaching end of life. According to Dewing (2001 p.19), residential facilities forms an average of 50% of all people living with dementia. Majority of residents in residential facilities often approach end of life there. Research have suggested that most residential facilities offer optimal care for people living with dementia compared to other settings (Engel et al, 2006 p.1569). Studies done by Ersek et al (2009 p.578), for people with dementia, reported that challenges faced by nursing homes include poor communication between care staff and families, lack of spiritual and psycho-social support, lack of proper knowledge, poor pain control and frequent hospitalisations. In Practice experience Residential facilities face challenges that makes end of life care inadequate for the needs of people with dementia. One of the major challenges is pain which makes approaching end of life a painful experience due to the inability to identify the presence of pain and its intensity. Other researchers have also reported poor facilities, environment, lack of doctors, unmanaged dyspnoea and poor pain management (Finucane et al, 2007 p.205). In this regard, it is very difficult to determine the wishes of people with dementia once they are approach end of life. However, the introduction of the Northern Ireland Hospice is linked to improved pain management and provision of better end of life care. It is therefore important to note there exists a gap between the policy and the nursing practice thus more research must be done to evaluate the extent to which the living environments for those who are approaching end of life. Home settings In practice experience as a Domiciliary Home Care Manager the fact that many people with dementia receive care in residential facilities and a few in acute settings, end of life at home are also evident. However, home care settings are often challenging for informal care givers thus a breakdown in the formal caregiver system often calls for a shift to institutional care outlined above. Various studies suggested that provision of end of life care in home settings demonstrates fewer symptoms and discomfort than those with approaching end of life dying in facility and acute settings (Forbes-Thompson et al, 2006 p.249). According to Gillick et al (2008 p.365), people approaching end of life can be supported successfully at home with the involvement of effective pain management, hospice programs and psychiatric care during end of life (Hirschman et al, 2008 p.295). However, there is poor management of pain and other clinical symptoms for those dying in home settings. DECISION MAKING AT THE END OF LIFE The principle of autonomy dictates that adults have the sole right to control their own body from unnecessary intervention based on the merits and demerits of that particular intervention (Jennings, 2004 p.201). Moreover, beneficence principles state as well as nonmaleficence dictates that the actions of the doctors must benefit a person and prevent harm as much as possible (Leong et al, 2007 p.125). However, when people are not able to make decisions as the condition approaches end of life and the preferences of the affected person are not known, it is difficult to adhere to the ethical principles outlined above. In this respect, decision making at the end of life for person approaching end of life is vital as parts of provision of care for people with dementia thus the family support and role in decision making is important. Decision making in relation to care approaching end of life is often made without their active participation because of the absence of verbal communication. According to Lynn (2008 p.958), advance planning of the future care through collaboration between people with dementia, relatives as well as their doctors is important in preventing disagreement on contentious issues affecting quality of life. Decision making approaching end of life for people with dementia is often done in accordance with an individual’s known wishes that may be written or not. As stated by McCloskey (2004 p.140), in residential care environments, conversations concerning people with dementia and their treatment and care are discussed soon after the person enters the facility and reviewed yearly or when there is significant change that warrants a review. The end of life preferences are normally records that form advanced directives on issues touching on limits of life prolonging treatments such as tube feed, acute illness treatments and resuscitation (Menec et al, 2009 p.399). Studies have however confirmed that advanced directives are very rare in communities as compared to residential facilities Moorman et al (2009 p. 469). Studies also confirmed that even within the residential facilities, people with dementia are less likely to have advanced directives compared to people with terminal cancer (Powers & Watson, 2008 p.322). Moreover, not all treatments are well documented in the directives thus there is always treatment dilemma from one time to another during the end of life for people with dementia. While health literacy and socio-cultural diversity are vital factors in shaping intervention decisions at end of life (Sloane et al, 2008 p.751), research suggest understanding preferences for end of life care which includes cultural competence and health literacy (Small, 2007 p.199). In view of these findings, there is a big gap in shaping the policy and nursing practice with respect to provision of care that supports the needs of racial and ethnic diversity for people approaching end of life. Planning throughout the dementia journey is therefore very important step to take to ensure that better decisions are taken that reflects persons’ preferences and improves their experiences of high quality life towards the end of life. Family Roles in Decision Making When prior directives are not written, or when such directives are not conclusive, families are often invited to make important decisions (Taunton et al, 2004 p.47). Family decisions are often required in times of crisis demanding for immediate decisions to be made on nutrition, hospital transfers, use of antibiotics and hydration (Thompson et al, 2008 p.41). However, research has shown that most family members are not aware that they are the primary decision makers during end of life stage thus most often do not discuss end stage planning with their relatives (Triplett et al, 2008 p.583). In this respect, decisions made are often rushed without having adequate information and with sufficient support from the care providers. This always led to surrogates choosing intervention based on their own preferences but not the preferences of their spouses (Van der Steen et al, 2009 p.327). This would support my practice experience when I had to make a decision whether to or not to resuscitate my father at the age of fifty three when he became ill. I felt I had to rush the decision and when my father passed away I felt guilty and had no support from professional staff in supporting my decision, in this regard I felt depressed following his death. The above findings show that family members are not well prepared to make decisions on behalf of their relatives. This is because they have a feeling that they do not have the right and sufficient knowledge about the course of the illnesses as well as potential medical complications in order to make informed decisions for their relatives (Volandes et al, 2009 p.759). Studies have also suggested that many family members and relatives feel that they need to receive proper education on the emergency situations such as tube feeding, resuscitation, nutrition and prolonging life in order to be in a position to make a less risky decision for their relatives (Watcherman, et al, 2008 p.2605). Family members should therefore try to seek information from the care providers (Watcherman et al, 2008 p.2608), though research has shown that they are not likely to be satisfied with end of life care information provided. According to Whittaker et al (2007 p.38), involving families in advanced care planning as well as giving the appropriate information opens and maintains channels of communication, identifies surrogate decision maker and helps prepare the relative for the eventual end of life. Research has also shown that forming family partnerships in care has been linked to improved interrelationship between care staff and the family, better communication and improved decision making which improves resident outcomes (Volandes et al, 2009 p.760). CONCLUSIONS AND RECOMMENDATIONS The above findings on dementia the journey towards the end of life care show that efforts are being made to ensure that people who die in nursing homes, acute care and home care receive adequate care. However, there exist serious gaps between the policy/literature and the nursing practice in all settings to care for end of life for people with dementia. Clinical issues remain a major challenge that present dilemma in decision making and involvement of the family. Training the nursing care personnel on pain detection, intensity of pain and its management is very important as this is one of the challenges in nursing practice. While consultation among the care teams reduces feeding tube placements, it was evident that there exists a gap between policy and practice thus there is need to train and educate family members on matters that relates to nutrition and hydration and to enable them make accurate and informed decisions to reduce the burden of decision making. Infection also presents threats to capacity of the care tem to offer quality life during end stage dementia. While the use of antibiotics may not be beneficial in the long run, research on the use of antibiotics should focus on how to manage symptoms since vaccines that seem to offer best alternative is limited to pneumonia and influenza. Pneumonia in particular is a great threat to the improvement of quality of life thus its management in the future will be big advancement in clinical practice. Nutrition also plays a vital role in reducing opportunistic and intercurrent infections and other complications. It is however important to note that tube feeding is still a major contentious issue and decision to begin tube feed and whether prolonging the life of a person with dementia at this particular time improves quality of life experience. Interrelationships and effective communication between the residents and care staff and their families as well as educating family members is important in reducing time needed to make a decision. 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