For the purpose of this assignment the topic of nurses assisting service users and their families prepare to make the transition from curative care into palliative care will be the focus. The assignment will provide a justification and rationale for the choice of the chosen topic. Existing literature will be critically reviewed and analysed to develop an in-depth understanding of the chosen topic. The assignment will then reflect on the analysis and highlight the relevance this has for nurses, service users and their families.
First the rationale and justification for selecting supporting service users and their families make the transition from curative care to palliative care as the focus of this essay will be explored.
The role of the nurse in assisting service users and their families prepare to make the transition from curative care into palliative care is an area which has been experienced throughout my nurse training. This is an area which I have found challenging and complex as the lines between curative and palliative care are frequently blurred, leading to staff feeling stressed and often experiencing burnout. Kaur and Mohanti, (2011) suggest that there are no clear cut boundaries between curative and palliative care and that physicians and nurses often lack the knowledge of what palliative care actually involves. Treatment of many diseases often requires a change from curative to a palliative approach and a shift in goal of medical care (Kaur and Mohanti, 2011). Earle, et al. (2008), see transition as the process of changing expectations and hopes. Marsella (2009) state that the nature of transition suggests that the individual is moving one step closer to death.
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Over half a million people die in England each year; statistics from (DOH, 2008a) show that despite 74% of palliative service users expressing a preference to die at home, currently only 20% achieve this. 55% die in hospital, the remainder in care homes and hospices. The House of Commons (2009) acknowledges these statistics and state that 90% of patient’s accesses care in the community setting. More home deaths would provide an annual cost saving to the NHS of up to £100 million, whilst also giving the benefit of enhanced service user care and meeting the final wishes of service users (DOH, 2010a). The DOH (2008a) End of Life Care Strategy supports the development of community services to facilitate preferences, offer joint decision making where service users have greater control in their care and aims to improve palliative care to enable adults with advanced, progressive illness, approaching end of life, to be given the choice to be cared for and die at home.
The Gold Standards Framework training and support programme is aimed towards helping district nurses and other health professionals provide the best possible ‘gold standards’ of care to service users at their end of life, showing that community nurses have a crucial role in delivering end of life care at home (NHS, 2000). ‘High Quality Care for all by 2012’ was launched in 2009 and ‘going for gold’ was introduced to put the district nursing team at the forefront in high quality and transforming community services, and aims to provide the best care for those wishing to die at home (NHS, 2008. and DOH, 2009).
The World Health Organisation (WHO, 2002) defines palliative care as a positive influence on the course of illness and regards dying as a normal process. It can be achieved through early identification and efficient assessment of physical, spiritual and psychological needs. It is stated that this approach improves the quality of both the service user and their families through the prevention and relief of pain and other distressing symptoms. Caring in a p alliative care context is shaped by the individual and their family as a unit, their culture, spirituality, and beliefs and values about dying.
The Department of Health’s second annual report of progress (DOH, 2010a) attempts to address the concept of dying and make ‘living and dying well’ a part of normal society. The importance of additional efforts being made in order to enhance palliative care is stressed within this report. Johnson and bourgeois (2003) state that within different cultures, dying is often a social, shared act where many seek a family centred approach to the experience. The person dying is centred within the family and continues to be the focus, with family members drawing on each other’s strengths to provide a good environment for all. However, Stevens (2009) discusses the negatives of societies’ beliefs on death. Home deaths happen rarely and in hospital are hidden from social view. In a recent survey conducted by Marie Curie Cancer Care (2008) almost four out of five respondents felt that death is a taboo subject for the majority of people in the country. The department of health (DOH, 2010a) strategy focusses on aiming to change the attitudes of people towards the discussion of death and dying to enable service users to be more comfortable in expressing both their preferences and wishes for care at the end f life. Taylor, et al. (1997) states that, through discussing the ‘celebration of dying’, positive effects can be achieved in helping with some of the difficulties faced by family’s fear of their loved ones dying at home.
There are many religions and cultures whose needs differ; this should be considered so that their preferences and beliefs are honoured. This assignment will not focus on any specific culture or religion and should be seen as a general overview. Due to the word constrictions of this assignment the complexities of ethical decision making in relation to individuals with diminished capacity have not been explored. I am aware of The Mental Capacity Act (2005) and The Human Rights Act (1998) which may need to be used in palliative care. An example of this would be on issues regarding individual capacity when choosing to withhold treatment and understand that the service user’s wishes may differ from that of the family.
Having explored the reasons for choosing the issue of supporting service users and their families to make the transition from curative care to palliative care in the community, methods of assisting and supporting people who experience this transition will now be analysed.
An early study by Glaser and Strauss (1965) showed that service users may experience emotional reactions to transition which in turn trigger feelings of abandonment, hopelessness, helplessness and sorrow. The study identified a theory of four types of awareness which underpins understanding of the way service users with advanced disease manage their prognosis: closed awareness, where others are aware of impending death, but the service user is not; suspected awareness, where the service user suspects what others know and seeks to confirm this; mutual presence awareness, where all are aware of the prognosis but pretend to each other they are not; and open awareness, where all openly acknowledge prognosis (Glaser and Strauss, 1965). A change in the attitudes of professionals now advocates an upfront method of truth whereby all are openly aware (Copp and Field, 2002). However, open-awareness can have it’s disadvantages, family members may not understand or approve with how the service user is managing their death, there is also the possibility of the service user themselves may have a less dignified death due to feeling that they can not face death and what it entails. Kaur and Mohanti (2011) suggest that the crisis of living with an incurable illness can be lessened for patients and their family members with greater understanding of the needs for change in treatment goals and care. Communication about prognosis and transition in the goals of medical care should be a part of the overall plan (Kaur and Mohanti, 2011).
Timmermans (1994) argues that this theory fails to address the implications of awareness and suggests that a further three divisions: suspended open awareness, where all knowledge and information given to them is ignored; uncertain open awareness, where service users disregards negative news and only accepts the positive; and active open awareness where all accept the outcome. Timmermans (1994) acknowledges that these divisions follow no pattern, and often individuals will shift back and forth between them depending on the information they have been presented with. A literature review by Lowey (2008) showed that there are fundamental difficulties with communication between service users and healthcare professions when tailoring the information to suit both service user and their families. The Royal College of Nursing (2011) suggest that a key challenge for all staff is knowing how and when to open up a discussion with individuals, their relatives and others involved within their care, about what they wish for as they near the end of their life. Agreement should to be reached by the multi disciplinary team caring for the individual on when discussions should occur and who should initiate them (RCN, 2011). Important issues in the transition from curative treatment to palliative care are agreement, timing and decision making (Kaur and Mohanti, 2011).
Ronaldson and Devery (2001) suggest that it is sometimes difficult to assess the awareness of service users and relatives with their understanding of the disease and its stages. These situations include coping with side effects of treatment or the individual’s adaption to physical impairment (Ronaldson and Devery, 2001). There are also often issues with the confronting of fears as this may imply impending death and dealing with unfulfilled ambitions and emotional disappointment (Morgan, 2001). A lack of openness and discussion about death and dying has adverse effects. Service users may be unnecessarily frightened about the process of dying and often relatives caring for loved ones may be unaware of their wishes and therefore how to provide help and support (DOH, 2008b). This is supported by Kaur and Mohanti (2011) who suggest that the transition between palliative and curative therapy may be filled with uncertainties for the patients, their families and health professionals. According to Ronaldson and Devery (2001) healthcare professionals are at ease at assessing a physical problem, however there are difficulties in knowing how to assess an emotional issue. Lack of information reflects the hesitation to discuss the approach of death with service users, which in turn has the potential to further increase service user fears and their reluctance to accept care.
Egan’s model of change (1990) describes the process of transition through recognising reality, accepting disability and investing in the future, through the phases of loss, transition and gain. A similar theory by Manion (1985) identifies the experiences a person goes through when managing change. This begins with a loss of focus, where service users are down. ‘The pit’ is the next stage where feelings of discouragement are displayed, and emotions are on show. This is described as the most difficult phase before a service user is able to move on, let go of the past and begin to accept change. The penultimate stage is known as ‘testing the limits’, where sadness begins to diminish; the final stage is about ‘searching for new meaning’, where steps are made towards a new beginning.
According to WHO (2002) spiritual care is an important aspect of palliative care. Oates (2004) suggests that the aim of spiritual care is to reduce anxiety about death, by identifying meaning of life. However, results from various studies have implied minimal evidence of spiritual caring due to nurses lack of knowledge of what is expected of them. Bailey et al. (2009) described their understanding of spirituality, how they recognised and addressed service users’ needs and how this is incorporated into their nursing practice. Several themes were identified, common to other studies, namely factors which enhance care, such as time and environment, and factors which reduced delivery of support such as nurses’ understanding of service user needs. Belcher and Griffiths, (2005) suggests that spiritual element is rarely considered as nurses do not feel adequately prepared to meet service users’ spiritual care needs. Punchalski, et al, (2009) states that undertaking spiritual assessment requires special clinical training. The department of Health, (2010b) supports this and states that in order to meet holistic needs of service user’s spiritual care must be addressed.
The influences which contribute to pain are social, psychological, physical and spiritual. In order for ‘total pain’ to be broken down, all of these areas must be addressed (Nicholson, 2010). The concept of ‘total pain is commonly used in palliative care to prompt health professionals to consider all possible influences on the pain experience (North East Cancer Network, 2008). Pain is an unpleasant sensory or emotional experience associated with actual or potential tissue damage or described in such terms of such damage (Campbell, 2009). Other interventions that may reduce a patient’s pain are to control the environment by decreasing lights, noise, unpleasant odours, and traffic. Complementary or alternatives methods may be helpful in combination with medication for example heat and cold, massage, therapeutic touch, acupressure, acupuncture, relaxation, visual guided imagery, distraction and music therapy (Campbell, 2009). According to Puchalski, et al. (2009) spiritual pain is difficult to define, whereas social, psychological and physical pains are easier to categorise and therefore address. Thompson, et al. (2008) and Pucchalski, et al. (2009) believe that spirituality is a necessity in providing holistic care. If spiritual care is not planned, implemented and then evaluated it can result in lack of holistic care being provided and therefore neglect of the service user as a whole person (Ellis and Narayansamy, 2009).
In order to recognise, understand and address service user’s need for spirituality, nurses need to have their own spiritual self-awareness (Bailey, et al., 2009). Through being aware of their own spirituality as well as that of the service user, nurses can provide spiritual care (Ellis and Narayanasamy, 2009). Byrne, (2002) suggests that the training for spiritual care involves self-emptying to make space for others. Through the exploration of themselves on their own spiritual journey, dropping of personal defence is key in enabling listening to take place and giving full committed attention. Findings in a study undertaken by Bailey, et al. (2009) suggest the importance of making a ‘personal connection’, which was expressed by over 55% of participants. The study describes comments nurses made of when two people ‘engage’ and that there is an element of spirituality present. 82% of participants believed that listening was the most importance skill, showing the need for a trusting nurse-service user relationship. The department of health (DOH, 2010b) states that the literature surrounding spiritual care in the community is sparse and that previous work may not translate well into current settings, suggesting that more research needs to be made in this area.
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According to Ellis and Narayansamy (2009) holistic care is based upon a balance between body, mind and spirit. Canning, (2007) state that holism is provided within palliative care through a climate of trust and a sense of being with the service user, rather than performing a task. Completing a holistic assessment should ensure that the nurse is able to create the best possible environment for both the individual and their families needs. According to Byrne (2009) the use of the service users story as the assessment tool in helping the service user prioritise their concerns, assessing support gained from those around them and identifying needs, is key in creating this environment. Through addressing the service users and families needs, distress can be managed, which can positively influence the course of the illness, the remaining quality of life and ultimately provide a ‘good death’ (Johnson and Bourgeois, 2003). Community nurses play an important role in ensuring this occurs; the importance of developing a good therapeutic relationship is vital. According to Wallace (2001), a good relationship between nurse and service user can lead to good symptom control.
Families and carers have an important role in the provision of care. Involvement in decision making, with the recognition that they also have their own needs is vital (Hudson, et al. 2004 and Eyre, 2010). Practical and emotional support, not only during their loved ones life but after bereavement, must be taken into account by nursing staff (DOH, 2008a). Throughout the nursing process, a critical role of the nurse is to guide the patient and family through all the information that is needed to understand care options (Emanuiel and Librach, 2011). Morgan (2001) and Hudson et al. (2004) state that there is a need for a sense of partnership in continuity of care and that the family must be acknowledged for their contribution towards the care of the dependant person. Taylor et al. (1997) inform a positive outcome when engaging the family in support and care of loved ones. Families support comes from seeing their loved one comfortable and their symptoms managed well, it is connected to quality of life. Family support is crucial to the provision of care and is a valuable resource in its provision (Johnson and Bourgeois, 2003).
According to Eyre (2010) the majority of care will come from family and carers therefore it is important to ensure that nurses gain trust and facilitates acceptance of the impending death. Taylor et al (1997) suggests that this can be achieved through teaching general nursing care to family and carers, allowing there loved ones to stay at home. However, Johnson and Bourgeois, (2003) suggests that supporting families to manage physical care for their loved ones is difficult as these needs intensify and deteriorate. They further suggest that families are often unprepared for the initial reaction to witnessing their loved ones experiencing unmanaged symptom control which is distressing for all. It is important that nurses initiate strategies to help service users and carers overcome negative feeling that may stand in the way of their ability to cope (Morgan, 2001). The department of health (2009) proposes that through careful planning effective communication and working with service users, families and carers, between hospitals, hospices and care homes, there will be shortened or reduced hospital stays and unnecessary admissions thus avoiding crisis.
Having analysed methods of supporting service users and their families to make the transition from curative care to palliative care, analysis on the relevance and effect that this can have on nurses, service user and their family will now explored.
King, et al. (2010) suggests that district nurses see themselves as having an important role within palliative care. Walshe and Luker (2010) agree with this, stating that nurses take pride in their role. Burt et al (2008) further suggest that nurses value their role in palliative care. Desbiens and Fillion (2007) conducted a study which explored nurses’ perceptions and the effects of their work with those at the end of life, revealing that some nurses felt great job satisfaction due to positive emotional outcomes and in addition this brought in the chance of personal growth. However, there were emotional stress factors experienced by some nurses providing palliative care due to the nature of their work, which was discussed in some detail. Major themes to emerge from studies were the exposure to multiple bereavements and the anxiety caused by the powerlessness to alleviate the distress of families. In an earlier study by Taylor, et al. (1997) nurses expressed difficulties in their own responses and behaviour due to emotions and feelings which could not be forgotten relating to the condition and powerlessness of service users, which often leads to emotional exhaustion.
Kennedy (2010) suggests that district nurses value their work, both the physical aspects of care and co-ordination of work to others. However it was also inferred that nurses often found the psychological aspect of their work causes the most challenges. According to Johnson and Bourgeois (2003) an underlying principle of palliative care is that most nurses felt uncomfortable and ill-equipped due to insufficient training in bereavement and had feelings in inadequacy in advanced communication skills. Without the necessary knowledge, skills and attitudes to discuss the end of life with service users and families the experience may be distressing for the individual, their family members and staff involved (DOH, 2008 And Albinsson and Strang, 2002).
Taylor, et al. (1997) suggested that negative effects experienced by a lack of continuity of care leads to nurses being unable to find solutions to service user and family members concerns caused a sense of helplessness and distress. Morgan (2001) discusses the community nursing team role, which is to ensure that strategies are in place in conjunction with other professions, in a timely manner with advanced preparation for anticipatory prescribing. Therefore collaborative working, through effective communication and sharing of information is imperative (DOH, 2010b).
External stressors and variables which have been identified in working with the dying are discussed by Newton and Waters (2001). These include environment and the communication and management systems of other work colleagues. Through regular clinical supervision, appraisal and continuing professional development, gaps can be bridged to ensure that staff has the knowledge, skills and attitudes necessary (DOH, 2004). A lack of opportunities to debrief feelings at work was also highlighted by Burt, et al. (2008). Newton and Waters (2001) suggest that numerous nurses have bottled-up feelings due to low staffing, increased workload and time constraints. Through a planned break, attending courses and study this can be resolved as nurses would have time out with others in similar situations (Newton and Waters, 2001).
The importance of using reflection as a tool to identify stress when working independently and when working in a team needs to be recognised by nurses. Positive indicators in assessing responses to stress and associated effects need to taken into account and acted upon in a timely manner (Payne, 2001). Taylor, et al. (1997) suggests that support structures would prevent long term psychological outcomes such as burnout. The power of the team, where support from colleagues was required to avoid feelings of working in isolation in lone-working in the community was discussed. According to Newton and Waters (2001) suggests that giving and receiving praise and encouragement for effort where due improves team working and increases confidence in staff.
Depersonalisation is often caused by stress; therefore it is important to identify the signs of stress early in order to maintain the health and well being on healthcare professionals and in order to provide optimum care to service users and their families (Newton and Waters, 2001). Coping strategies are discussed by Desbiens and Fullion (2007), it is stated that by being able to give meaning to ‘a good death’ one is able to modify own perceptions of the situation whilst remaining connected and drawing on disengagement methods to lesson the emotional response to stress. Regarding personal survival, Canning, (2007) state that it vital in understanding our own limitations when responding to service users’ needs and remaining realistic of what can be achieved within the scope of ones role.
The transition towards palliative care is often difficult and distressing for all involved; Marsella (2009) highlights the need for an increased awareness in optimising service user comfort throughout this final transition. Nurses require knowledge, skills and time to ensure that service users have received holistic care through meeting their social, psychological, physical and spiritual needs (DOH, 2010b. and Burt, et al. 2008). Kaur and Mohanti, (2011) suggests that in order to achieve a suitable continuity of care till the last phase of life several measures are necessary these include; all health care professional should learn about the basics of palliative care, improving communication skills and involving patients and their families in medical decision making. Meeting these needs often has a positive effect on service users overall well-being and often restores a sense of control increasing the likelihood of being able to remain at home, which can ultimately lad to a ‘good death’ experience (Wallace, 2011).
This assignment has focused on the topic of the role of nurses assisting service users and their families prepare to make the transition from curative care into palliative care. The assignment has provided a justification and rationale for the choice of the chosen topic. Existing literature has be critically reviewed and analysed to develop an in-depth understanding of the chosen topic. This assignment has then reflected on the analysis and highlighted the relevance this has for nurses, service users and their families.
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