All about JoelThis care study is going to look at the patient

All about JoelThis care study is going to look at the patient journey, who for this study I will be using a pseudonym, Joel, this is due to the clause 5 of the priortising people section, in the NHS code of conduct (2018). Which states, as a nurse, midwife or nursing associate, you owe a duty of confidentiality to all those who are receiving care (NMC, 2019). Throughout this journey, we will be addressing the concepts of communication, empowerment, compassion, respect, holism, empathy, as well as the parity of esteem, and autonomy. We will also look at Joel’s care and his choices and how we address these concepts in our nursing practice. As part of Joel’s journey we will address the importance of person-centred care, and the needs not only of Joel, but his family as well, including supporting their plans for their future wellbeing and fulfillment, but also looking at Joel’s end of life care plan.Joel is a four-year-old boy who is diagnosed with Spinal Muscular Atrophy (SMA) type 1 which is a rare, genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting (SMA support UK, 2019).A person-centred approach to nursing focuses on the individual needs, wants and goals, so that our patients like Joel become the centre of their care as well as the centre of our nursing process which includes assessment, diagnosing, planning, implementing, and evaluating our patients care. (Professor Draper, J, 2013). The importance of person-centred care is to engage successfully with our patients and get to the know the person behind the patient, and provide care that is meaningful, whilst emphasizing freedom of choice, and promoting physical and emotional comfort, and involving the patients family and friends as much as possible (Royal College Of Nursing,2016). Joel comes to the hospice three times a week for respite care, respite care is important for Joel, and for his family because respite allows Joel’s family to maintain their own lives; to do jobs, see their own doctors, and possibly attend support groups, which is said to lower stress levels (Whitmore, K, E, 2016). The benefits to Joel include opportunities for growth and development, more daily variety and more varied relationships, as well as an opportunity to make friends and have fun (Hospice UK, 2019). Before Joel’s arrival at 9 am, I got out his care plan which is called, all about me because I wanted to know everything about Joel before he arrived (NHS, 2018). The care plan follows the Roper-Logan-Tierney nursing model, which was created in the 1980s and has since become one of the most used care planning formats (Ungvarsky, J,2019). The holistic model addresses the person as a whole, covering all aspects of daily living including communication, breathing, sleep, diet, personal hygiene, as well as an elimination of bodily functions. Healing is the journey towards holism using love and compassion (Griffin, A, 1993). Joel arrived on a special bed which is purpose-built for him and it has all the machines he needs on it, due to the muscle atrophy Joel needs constant ventilation, suction, and is fed through a peg. For Joel’s comfort his care plan tells me, he needs to remain laid down on his back with a small pillow in between his knees, this will enable Joel to breathe more deeply, which means less mucus will build up in his lungs (SMA Support UK,2019). Joel cannot use any part of his body due to muscle wasting (NHS, 2017) and his communication is very limited. As a trainee nurse associate learning how to interpret non-verbal communication messages such as nods, frowns and eye movements, is important as it leads to better understanding of our patients care (Boyd, C, Dare, J, 2014). The only way Joel can communicate is with his eyes, non-verbal communication is often described as body language, body language says a lot about our interest and engagement in the communication we are having (Royal College Of Nursing,2016). I wanted Joel to feel empowered, this means to give Joel the confidence, voice, and power to speak on his own behalf and to feel in control of his own care (Oxford University Dictionary, 2019) and to have the choice about what he wanted to do with his day. Our patients should be supported to make their own choices when possible, in a way they can understand (Skills for Care, 2019). So I made some bright coloured choice cards, I gave Joel the choice of going in the sensory room, transferring onto the water bed, or listening and playing stories in the main day room. I showed Joel the cards and his solid eye contact (Hemmingsson, H et al., 2018) on the water bed card, enabled me to know he wanted to transfer onto the bed, which is used as a therapy resource (The Free Dictionary,2019). The concept of empathy, empowerment, and choice is the basic building blocks of ethics and ethical conduct to others, and for Joel it’s important to think about his daily activities and what will bring him the most joy (Dinkins, C, 2011) to make his time at the hospice the most fun it can be. Before Joel’s parents left for the day I asked them to come and see what we were doing with our day, I wanted them to be involved and know that Joel was settled and comfortable, and that I respected their care plan and that I had taken the time to read it, to ease their anxiety’s before they left for the day. As a trainee nurse associate, we can strive to achieve a high degree of rapport with a family, by showing genuine interest and compassion towards our patients like Joel. Empathy and a non-judgemental approach, are key for the development of trust and rapport when building relationships with our patients and their family (Roberts, JF, Fenton, G and Barnard, MC, 2015). I also wanted to show a degree of autonomous practice, which is having the right to make decisions and the freedom to act in accordance with our own professional knowledge base (Merriam-Webster, 2019).Within Joel’s care plan is an Emergency Health Plan (EHP) which makes communication easier if there is a healthcare emergency (NHS Foundation Trust, 2019). The life expectancy of a child with Spinal Muscular Atrophy type 1 which is classed as the most severe life-threatening disease of all four types of SMA, is around two years old, but the oldest known survivor of SMA type 1 is 15 years old (Muscle Atrophy,2016). So Joel’s emergency health plan is quite detailed, if he goes into respiratory arrest, Joel’s plan is to have full ventilation and full resuscitation (NHS, 2018). Joel’s emergency transfer, transport has to be called, Embrace is a highly specialist, round-the-clock transport service for critically ill children in Yorkshire who require care in another hospital in the region (Sheffield Children’s Trust, 2019), where Joel will be taken to a specialist critical care unit for children, and Joel’s parents are to be informed as soon as possible. In the unfortunate event that Joel does not survive, he is to be brought back to the hospice to be laid to rest in the butterfly suite, named after the butterfly which leads a short but beautiful existence. The butterfly suite is a specially cooled room where Joel will be able to remain until the family decide it’s time for his final goodbye, this special area enables the family to have as much time as they want with Joel in a comfortable area for as long as they need (St Andrews Hospice,2019).Even if their time is short, it is important that all our patients including Joel and his family are supported to plan their future wellbeing and fulfillment so that their quality of life is greatly improved. The care act (2014) describes well-being as treating someone with respect, including parity of esteem, which describes valuing our patient’s mental health as well as their physical health (Royal College of Nursing,2019), family and relationships, and emotional well-being (Care Act, 2014). It is important that Joel and his family have a voice, so their wishes can be known. The use of an advocate is always possible if the family feel they are not able to communicate their wishes themselves, the advocate will work with them and speak for Joel and his family if required and defend and safeguard their rights. (The Free Dictionary, 2019).In conclusion through Joel’s journey, we looked at person-centered care and came to the conclusion that working in a person-centered way puts our patients at the very centre of their care and in control of their own choices and decisions about their lives. Person-centered care is about acting upon what is important to Joel and all our patients in our care. Choice, dignity, and respect is about giving our patients the power to speak up and take control of their own life’s to lead a more fulfilled way of living. We also addressed the importance of communication and how communication should be delivered the way our patients understand. In order to promote our patient’s wellbeing, we now know they need to be as happy as they can be with all aspects of their care including their end of life care. The most important part of my patient-centered care journey is Joel, and being able to understand him, and have his best interests at heart to help maintain and improve his quality of care. Like a flower that will grow to its full potential if the conditions are right, our patients will flourish and reach their potential if their care is right.

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