This essay seeks to examine the needs and evidence-based care for service users with complex and co-existing health and social care problems, especially including learning disability (LD). Clinical decision making in nursing has to do with the application of critical thinking skills towards the selection of the best available evidence-based options in the control of risks and in addressing the needs of patients to ensure the provision of high standards of care (Standing, 2014), the accountability of which resides on the nurses (NMC, 2015). This implies that it is imperative for LD nurses to have a foundation for effective decision-making regarding the care of people with learning disability and other complex needs. As the assessment of risk is an integral part of nursing, one of the most common judgments an LD nurse has to make is how their actions will reduce or eliminate risk. Each decision-making approach, therefore, requires a certain skill set in order to get the desired results. This obliges LD nurses to make use of valid evidence to support their decisions when determining what care to provide a service user.
This work will begin with a presentation of a background, which highlights case study and explores some of the health complexities faced by the Person with Learning Disabilities (PWLD) and other Long Term Conditions (LTC). This background sets to the tone for the type of care that would be required. A discussion section follows which briefly explains the nursing process is and the Bio-psychosoical (BPS) Model is highlighted as the model which will guide the systematic assessment, planning, care delivery and evaluation of the service user. The main focus of this model will be to indicate how an effective implementation of the nursing process and decision making will prevent deterioration and contribute to a good end of life for a PWLD who has other complex needs. In order to emphasise the importance of collaboration in the delivery of person-centered care, there will be discussions on the importance of shared decision making, leading to the empowerment of others. The role of the Multidisciplinary Team (MTD) will be highlighted and throughout and the role of the LD nurse, in this case, will also be discussed.
This case study is particularly important as it highlights the role effective decision making can play in ensuring that a PWLD and other complex health needs receive the care they deserve, within the right policy framework and the application of best practice.
This study is based on the case of 32-year-old Jessica, a female with profound and multiple LD. Jessica suffers from Rett Syndrome. Jessica also suffers from hearing impairment affecting both her ears, is epileptic, suffers from dysphagia, is immobile, requiring the use of a wheelchair, and also has urinary and fecal incontinence.
Rett syndrome is an X-linked leading neurodevelopmental disorder of gray matter found in the brain of the affected person. Rett syndrome is fairly consistent in its signs and symptoms. It is a degenerative illness which has been highlighted as one of the most common causes of mental retardation in females accounting for about 1 in every 10,000 to 15,000 females (Bethesda, 2015).
As there is currently no cure for Rett syndrome, it needs to be effectively managed through proper care strategies (Koslowe et al., 2009). As with the case of Jessica, modification of social medications, the use of sleep aids, proper management of her gastrointestinal and nutritional difficulties, the different strategies used to increase her communication skills and ability, constant observation of scoliosis; the use of anti-psychotics and physical therapy are some of the ways through which Rett Syndrome is managed and controlled.
As a result of these health requirements, Jessica lives in an accommodation with four other female service users with similar needs and is cared for by a team of carers and support workers. In addition to the need for the careful observation of scoliosis and stomach and nutritional problems, Jessica needs help with personal care.
Recently, there has been a deterioration in Jessica’s health necessitating a five-day stay in a respiratory ward. Upon discharge, Jessica has been prescribed antibiotics and analgesic medication in addition to the medications she was on before admission into the hospital.
As the prognosis for Rett Syndrome is only 40 years (Koslowe et al., 2009), it is, therefore, understandable that Jessica’s father is very worried following the recent hospital episode. Considering that her father has lost his wife suddenly, necessitating his inability to care for Jessica at home, but has kept close contact with her, it is, therefore, crucial that he is fully involved in planning her care as she gets out from the hospital.
Waldrop (2008) clearly highlight that the support and care of families is an essential part of end-of-life care. This requires the involvement of an MDT, to ensure that there is appropriate access to psychosocial and bereavement support (Waldrop, 2008).
Also, given Jessica’s difficulties with communication, it will be expedient for his father to be able to assist in the decision-making process regarding her care (Hudson et al., 2008). However, a member of the MDT with experience in grief and loss counselling will be required to work with Jessica’s father to ensure that he has effectively dealt with the loss of his wife and is in a good position to assist in making decisions about Jessica (Lui et al., 2016; Wartmann, 2016). Such end-of-life decisions involving family discussions pave the way for consensus decision making by professionals and families, and aids in supporting family members to identify realistic goals of care and contribute towards the decision-making process, while at the same time also helping them to deal with their own distress (Lautrette et al., 2006).
- The Nursing Process
According to Craven et al., (2013) the nursing process involves the assessment, diagnosis, planning, implementation, and evaluation of care. This success of this process is dependent on both the personal qualities of the nurse, the effective use of available evidence, as well as upon the setting of the assessment (Standing, 2014). In the case of Jessica for example, increased knowledge of the multiple challenges faced by Jessica and a proper understanding of the events of the past few days in leading to her hospitalization will lead to greater clinical accuracy in judgment during the assessment. It has been argued that the more experienced a nurse is, the higher the likelihood that they will know what to look for, and based upon their wealth of clinical knowledge and personal experience, the nurse will be in good stead in making a more competent diagnosis (Mutsatsa, 2015). There is no gainsaying the fact that the more competent a diagnosis is, the higher the possibility that it will lead to a better-planned and implemented care (Gordon, 2015). This should be underpinned by an effective theoretical model.
- Bio-psychosocial (BPS) Model
The BPS model was developed by George Engel as a useful approach that could be used in the understanding and treatment of learning disability and mental health problems so as to facilitate their treatment. The biopsychosocial model revolves around the biological, psychological and sociological spectra and how they are interrelated (Beardmore & Elford, 2016). It is said to be one of the most widely used models in clinical practice especially in situations where there are MDTs working (Beardmore & Elford, 2016).
The BPS model lays emphases on the importance of integrating the psychological, biological and social factors of a person’s life in the analysis of LTC especially for PWLD and mental health challenges (Gordon, 2015). In a complex case such as Jessica’s this model is effective because it will take into account her physical and mental challenges, based on the understanding that whatever affects the body has the tendency of affecting the mind and vice versa, Given that Jessica has been having problems with her diet, this can result in physical weakness or other medical problems likes ulcers, which can further complicate her difficulties in swallowing and hence taking her medication. Jessica’s inability to swallow her medications, especially the newly prescribed antibiotics could result in a relapse, causing another deterioration in her health. Using the BPS can, therefore, ensure that this possibility of deterioration is greatly reduced.
Although there is contention regarding the practical effectiveness of theoretical models in assessment, with the argument based on the fact that person-centred care can be compromised through rigid or complex structure structures (McCrae 2012; Jalaluddin, 2014; Pridmore et al., 2009), the BPS is a model that involves the action of MDT, hence, providing the opportunity for multiple inputs (Beardmore & Elford, 2016). This, however, requires nurses to take an evidence-based approach and make use of assessment frameworks that are appropriate to the specific case. This is particularly relevant in the field of LD nursing where nurses are taking on increasingly advanced roles (Bradbury‐Jones et al., 2013), and are required to work across different frontiers in order to meet the needs of service users with multiple problems, especially within the community (see DH 2006). The BPS model can, therefore, serve as an effective guide to the overall approach to the assessment and implementation of Jessica’s care by providing a specific focus for each member of the MDT as they make clinical judgments and take decisions in the different processes that will result in the making of an effective assessment. The assurance of this effectiveness in mitigating deterioration will be greatly reliant on effective communication and shared decision making.
- Shared Decision Making
The shared decision-making process generally assumes that two experts or teams of experts, work collaboratively in making complex medical decisions about a person’s care (Charles et al., 1999). In cases such as that of Jessica, this view will be lopsided as it seems not to take into account the crucial role of the family (Hess et al., 2015). The shared decision-making process will, therefore, involve not only professionals but also members of the family and the service user (Lewis et al., 2016). In a study by Antaki et al (2008), it was found that the processes of involving PWLD in everyday decision-making, were not always straightforward. This study highlighted several areas that called for concern within the framework of shared decision-making especially in residential care (Antaki et al 2008), Mindful of these challenges, the care plan for Jessica would be one in which shared decision-making will be an interactive and collaborative process that occurs between the LD nurse, Jessica (and her father) and all the members of the MDT. This will be done with the understanding that during the shared decision-making process, “the nurse becomes a consultant to the service user, helping to provide information, to discuss options, to clarify values and preferences and to support the service user’s autonomy” (Adams and Drake 2006 p.88).
- Empowerment and Self-management
The overarching objective of the LD nurse seeking autonomy especially in situations of LTC’s is to ensure that the PWLD is at the center of every decision made and that it is about them. In Jessica’s case, involving her father would ensure that he is part of the process to ensure that as her advocate, she is empowered in every decision made. to Singleton (2017) explains that EBP remains an integral part of effective healthcare plan because it leads not only to be the best quality of care but also ensures the best service user outcomes. EBP is empowering because it involves the combination of expert knowledge, the preferences of the service user and research evidence within the context of the resources available (Burns & Grove, 2010).
Outcomes could be short, intermediate or long term, so as to enable the nurse to clearly identify the service user’s health status and progress over time, especially in the case of LTC and profound learning disabilities (May et al., 2016). In Jessica’s, ensuring that outcomes are focused on her and are realistic, providing short-term goals to be achieved and when the outcomes ought to be evaluated, will be expedient. In such a case with poor prognostic (Koslowe, 2009), setting realistic outcomes and interventions would require the nurse to be able to distinguish between nursing diagnoses that are an immediate risk to the service user’s safety or life-threatening and those that may be dealt with at a later stage. Identifying and focusing for example, on ensuring that some of the problems related to seizures and respiration are given priority over issues of physiotherapy would be setting more realistic goals that would ensure her empowerment.
- Policy Drivers
Jessica’s empowerment would have to be done in a manner that takes into account her capacity. Every service user ought to be presumed to have the capacity to make their own care decisions unless there is evidence of their lack of capacity (Graham & Cowley, 2015). The Mental Health Act (MCA) 2005 provides the legal framework within which actions and decision-making can take place on behalf of a person who lacks the mental capacity to make these decisions for themselves (Graham & Cowley, 2015). Section Five of the MCA 2005 states that healthcare professionals have the responsibility to take the necessary steps to check a person’s capacity. In Jessica’s case, her capacity must be assessed in line with Sections 2 and 3 of the MCA 2005. Under these sections of the MCA 2005, it must be established that Jessica lacks capacity in relation to making her end-of-life decisions and in issues relating to her care following her discharge from the hospital. Even after it is ascertained, that Jessica lacks capacity, every decision of her care will be in line with her best interests.
The best interests of persons with LTC are clearly highlighted in the guidelines of the National Service Framework for People with LTD (DoH, 2005. Also, for PWLD Disability Discrimination Act (2005) and the Equality Act (2010) obliges professionals to make reasonable adjustments to contest inequalities. This is further reinforced by the Care Act 2014 which places the responsibility on local authorities to provide services that prevent people’s care needs deteriorating.
Within these policy frameworks, Jessica will be able to get the right level of care that will ensure effective management of her condition to alleviate deterioration and ensure good end-of-life Care.
- Role of the LD Nurse
The importance of the role to be played by the Community LD Nurse is highlighted in the literature and within policy (Marsham, 2012; DoH 2005). According to NSF (DoH, 2005) in caring for people with LTD community nurses should play a crucial role, as their interaction with service users, provides not only an avenue for emotional support through the developing of close trusting relationships but also one in which health problems can easily be identified.
As a direct response to the issues involved in end-of-life care within the National Health Service (NHS) and with social care services in general, the DoH presented the End of Life Care Strategy (2008) and was further articulated in the White Paper, Healthy Lives, Healthy People (DoH, 2010). The core aspects of this strategy highlight the importance of the role of the nurse in care planning, stating that by being part of an MDT, the nurse will be able to play a crucial part in ensuring that the right care is given. In this case, the nurse will play a crucial role in Service User Assessment, Planning, Co-ordination of Care and evaluation of care.
The first thing the nurse has to do is carry out an assessment to ascertain the level of care escalation necessary for Jessica following her discharge from the hospital. The LD nurse will use the Roper, Logan and Tierney model in Jessica’s assessment. This model is useful because it contains the twelve activities of daily living which according to (Holland 2003, p.9), are “maintaining a safe environment, communication, breathing, eating and drinking, elimination, personal cleansing, and dressing, controlling body temperature, mobility, working and playing, sexuality, sleeping, and dying”.
While many of these activities were already in place before Jessica’s admission into the hospital, there is the need for a reassessment of some vital areas due to the deterioration that necessitated her going to the hospital. Attention would be paid to some key areas such as the environment, the breathing, diet, personal care, sleeping and dying.
The planning of Jessica’s care will be based on short-term goals – ensuring that her breathing improves, that her sleeping improves, that there are no seizures, that her diet and fluid intake improves – over the course of the additional medication received from the hospital. Her long-term goal will be to get back to the stable state she was, which made it possible for her to go out with her father. Given that Jessica was treated in the hospital for aspiration pneumonia and administered IV antibiotics, a key focus of her plan will be on improving her oral motor status for swallowing, planning her diets, reassessing her calorific and fluid intake levels, and the provision of alternative means of nutritional support. As Jessica is also suffering from dysphagia, the two main areas of concern planning her the management of her diet would be the maintenance of adequate nutrition and to ensure safety during oral feeding. Other areas where the plan will need to focus would be Jessica’s breathing and personal care to ensure that there are measures put in place to prevent respiratory deterioration. Jamieson (2007) highlights that checking and recording of breathing rate and the pattern is crucial as it is the only good way to assess improvement or deterioration. In Jessica’s case it will be very helpful method for the LD nurse to be able to evaluate the response to treatment.
The coordination and delivery of Jessica’s care will be done by the MDT (Dietician, GP, Physiotherapist, Counselor, support workers, CLDN etc.) The importance of MDT and communication would be central component in the delivery of high-quality care for Jessica, especially given her prognosis (DoH 2008). The MDT will ensure that different areas of focus identified in the assessment are given priority. As dying is also a part of the activities suggested by the RLT model, it will be essential that preparation for Jessica’s end-of-life care are put in place. While assurances will have to be given to Jessica’s father regarding her current recovery in hospital, it will be essential that the nurse takes approaches together with other professionals of the MDT, such as counselors, to communicate issues related to end of life. Ackley et al., (2016) highlight that a focus on talking with patients and families about dying is an essential part of nursing practice.
In evaluating the care Jessica is receiving, the nurse will focus on the ensuring that Jessica’s short-term goals of getting a stable breathing regime, improved dietary and fluid intake, better sleep pattern etc. are met. These goals will be evaluated within the span of the antibiotics and paracetamol to ensure they are making the right impact on Jessica’s life. Jessica’s long-term goals of getting back to the stage where she can go out with her father will also be considered.
This essay, based on the case study of Jessica, has laid out a plan for her care after a deterioration that led to her spending five days in hospital. A background was presented which highlighted the health challenges faced by Jessica and particularly the poor prognosis of Rett Syndrome. A discussion section highlighted the need for an implementation of the nursing process which involved among other things using appropriate models and engaging in effective communication through shared decision making. Highlighting the importance of EBP, this work went on to explore the role of the LD nurse in assessing, planning, delivering and evaluating Jessica’s care. It highlighted the importance of maintaining short-term goals to ensure that there was no rapid deterioration. The part to be played by an MDT featured prominently in the plan of care. Overall, this essay has highlighted that several things need to change in the manner in which Jessica’s care is provided to ensure that her father in included and that plans for end of life are also made.