In response to the current issues in end of life care within the NHS and social care services, the Department of Health formulated the End of Life Care Strategy (2008) and is still promoted by the NHS White Paper, Healthy Lives, Healthy People: Our strategy for public health in England (November 2010). Among the aspects of this strategy, care planning is where the nurse is actively involved, being part of the multidisciplinary health care team expected to implement this care pathway. Implications for community health care providers, service users and significant others will be evaluated in this paper.
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Nurses have an active role in supporting individuals, families and carers with long term conditions and end of life care needs. It is the nurses’ responsibility to assess the individual, family and the carer’s state of awareness, the signs of the individual’s impending death, and their advanced decisions such as the individual’s needs, wishes, preferences and advanced directives such as the living will, as mentioned by the End of Life Care Strategy.
The code on the standards of conduct, performance and ethics for nurses and midwives provide the following roles of nurses in end of life care (Nursing & Midwifery Council, 2008):
Gain trust of patient for their health and wellbeing
Care the patient as first concern, treat them as individuals and respect their dignity
Work with others, their families and carers, and the wider community
Provide a high standard of practice and care at all times
To be open and honest, act with integrity and uphold the reputation of profession
Moreover, the nurse is responsible in planning the maintenance of comfort and promoting the person’s dignified and peaceful death, implementing the provision of relief for individuals, families and carers, help for acceptance of loss, and evaluation of the care planning (Kozier et al, 2004).
Impact of Policies, Legal and Ethical Issues
In line with the End of Life Care Strategy guidance in care planning is the role of the nurses in documentation of the patient’s needs, wishes and preferences and set of actions agreed, which includes the preferences about the place where the patient wants to die, and any advanced health care directive such as making a living will. It is also the initiative of the nurse to conduct a review of the care plan by the health care team, the patient and carers, and also as the patient’s advocate in gathering information and informing the team about the changes in the patient’s condition, preferences, or even any previously-made advanced directive.
The practice of nursing, like any other health care profession, is governed by international, national and local policies and ethical issues, and is governed by standards and guidelines of the Nursing and Midwifery Council. However, the United Kingdom laws manifest limitations and ambiguity with regards to the possibility of being prosecuted in relation to the patient’s right-to-die (Hirsch and Batty, 2009), though on the contrary, the End of Life Assistance Bill was rejected (BBC, December 2010). Nurses are included from Lord Falconer’s message about the new laws requiring them to end lives, specifically on withholding a life-preserving treatment (London Evening Standard, 2006). Thereby, nurses may face prosecutions within their scope of practice even though the physician takes the ultimate responsibility (Carlet, 2004).
As a result, physicians and nurses alike experience ethical issues in end of life care, mainly on the obligation to reduce patient’s suffering and the uncertainty of the most appropriate intervention for the patient and family, but nursing actions are influenced by physician’s decisions (Oberle and Hughes, 2001). If doctors can be prosecuted for refusing to honour a valid living will in withdrawing a life-preserving treatment, the nurse will be liable if she decided not to carry out the order, unless she passed the responsibility to another nurse who does not share her dilemma. Though the vagueness of the legal system in the UK brings uncertainty for nurses as they care for a patient approaching end of life, it is still not an excuse for the nurse not to render quality end of life care, for according to the End of Life Care Strategy, how care was rendered for these patients reflect on how care was being given for the sick and the vulnerable.
The nurses’ participation in care planning should consider the pathophysiology of patients undergoing end of life. There are many authors who published their own stages of dying, but the most common is the Kübler-Ross’ (1969) five stages of grief: denial, anger, bargaining, depression and acceptance. The nurse must be aware that each phase has their own specific nursing intervention to make the care planning effective.
Kozier et al (2004) outlined the nursing implications to each stage of grieving appropriate for its anticipated behavioural responses:
During the denial stage, the patient is refusing to believe about the anticipated death and is still unready to deal with his or her problem, so the nurse should not reinforce denial and not acquire the same denial behaviour (transference) but simply giving verbal support.
During the stage of anger, the patient and/or the family may be angered easily on simple things (displacement defence mechanism), so the nurse should not personally take the anger but rather help them understand that it is a normal response and then deal with their needs. It is not yet the appropriate time to discuss with the patient and the family about advanced directives during these early two phases unless they say so.
During the bargaining stage, the patient and/or the family may seek to bargain and may express guilt or fear for past events, so the nurse should listen and encourage them to talk out their experience, and present spiritual support if it suits them.
During the depression stage, the patient and/or the family may grieve on the end of life and talk unreservedly or withdraw from communication, so the nurse can use non-verbal communication techniques and allow the patient and family to express their grief.
Finally, during the stage of acceptance, the patient and/or family had accepted that the imminent death is inevitable and have decreased interest in socialization, so the nurse can help them understand the need for socialization and it is also the best time for the nurse to discuss advanced health care directives.
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What is not certain is whether for the physician or the nurse to open up an advanced decision in end of life care during the earlier phases of grief when the discussion of those won’t be comfortable for the patient and the family, or whether they have to wait for the acceptance stage. The strategies, policies and UK laws do not consider the stage of grief in informing patients and relatives about these advanced decisions. The health care team may offer these options earlier to the patient and family, but should understand if they refused to talk about it yet.
As the stage of grief progresses, there is a tendency that the patient will want less information but the family or carers would need more information, though there is a high need of information on all stages of grief. The nurse can offer to discuss them if the patient or family would like to.
Complex Health Education / Promotion Strategies
The NHS National End of Life Care Programme provides support for health and social care services in improving the end of life care through the implementation of the End of Life Care Strategy, which involves different steps:
Identification of people approaching the end of life
Coordination of care
Rapid access to care
Delivery of high quality services in all locations
Management of the last days of life
Care after death
Support for carers
Preparation for the end of life care begins with nursing education’s Fundamentals of Nursing and Geriatric Nursing, and extends to continuing education. The way on using communication skills in discussion about dying to patients and relatives is a core competency in end of life care (White, Coyne and Patel, 2001). However, these educational backgrounds are not sufficient to make nurses adequately prepared for the challenges in end of life care (Meier, Isaacs and Hughes, 2010). Thus, several health education and promotion strategies are available as a guide for nurses caring for patients on their end of life in the United Kingdom.
An important aspect in care planning is the ability to use communication skills appropriate for the patient on end of life. However, communication should be a two-way process; both the sender and receiver should participate to make it effective. Up to 40 percent of patients on their end of life experienced severe communication problems (Higginson and Costantini, 2002), having missed opportunities in listening and responding to families, acknowledgement of emotions and exploration of patient’s preferences and other concerns (Curtis et al, 2005). Among the less frequently discussed by physicians to the patients are the lengths of time when the patient can live, the experience of dying that the patient will encounter and spiritual concerns (Curtis et al, 2004). Generally, patients and carers have high need of information about the patient’s illness, future symptoms, management, life expectancy and treatment options (Parker et al, 2007). On the contrary, without the participation of patients on end of life, no effective communication skill can suffice the need of information. The study of Cohen et al (2005) reveals that 95 percent of patients lack decision making capacity, and only 20 percent of the patients had their wishes obtained.
Nurses approach the same communication issues as physicians. End of life care is part of the nursing practice, which focus on talking with patients and families about dying (White, Coyne and Patel, 2001). In addition to communication skills, nursing intervention considers the patient to be as pain-free as possible, maintaining comfort and dignity and the involvement of the patient’s family (Kirchoff et al, 2000). However, some believed that unit-level conferences on grief counselling rarely or never happened at all (Puntillo et al, 2001).
Nurses must give importance in confidently communicating the appropriate needs of the patient on end of life. The nurse should understand that it is the time of emotional crisis for many. Allowing them to openly express issues or concerns in a non-judgmental manner using therapeutic communication (Black and Hawks, 2005). The nurse should allow the patient and family to express themselves especially their needs, the use of non-directive conversations, use of silence when appropriate, and demonstration of willingness to listen to difficult and painful concerns (Stanley, 2000; Stanley, 2002). The nurse must know the appropriate communication on every stage of dying (as discussed earlier), when it is best to gather information during bargaining and depression stage, and it is best to discuss about plans in making advanced decisions during the acceptance stage.
Participation in care delivery
The nurse will start the nursing process with assessment. It is the nurse who will gather data about the patient’s needs, wishes and preferences, as mentioned in the End of Life Care Strategy. Although it is the physician who is obliged to discuss any plans of making advanced directives, the nurse must be able to encourage the patient and family to open up the discussion about it to the physician. Moreover, the nurse should assess the patient and family’s awareness about the patient’s condition, since physicians may not immediately disclose any information if he finds out to be inappropriate. It is also the nurse role in identifying what stage of grief the patient and family. Among the most common nursing diagnoses that can be given are Fear, Hopelessness, Powerlessness, Caregiver Role Strain, Impaired Family Processes, Anticipatory Grieving and Dysfunctional Grieving. Planning of care is mainly on helping the patient and the family go along with the end of life process and fulfilling patient’s needs, wishes and preferences within the acceptable parameters of the law and the standards of care stated in the policies and guidelines of the Nursing and Midwifery Council. Implementation is mainly on providing comfort maintaining the person’s dignity while approaching death as the nurse carry out the plan of care as agreed upon. Finally, nurse will evaluate the care plan if the desired outcomes are met (Kozier et al, 2004).
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