The purpose of this essay is to examine the effects of loss for an individual for whom I have cared for. This will include the effects this has on the person’s well-being and their significant others. I will then analyse the role the Learning Disability Nurse has in helping the individual adjust to the loss they have suffered. The effects of loss can mean different things to different people and occurs in a variety of differing contexts. It is the experience of parting with an object, person or belief that one values.
Freides (2001, pg89) defines loss as a ‘failure of anticipated stimulation or reward and is understood to refer primarily to social relationships. ‘ However it is not just about losing someone through death, we can come across it in a number of situations. Such as the separation from loved ones, bereavement, birth of a baby, incapacitation, unemployment, retirement plus many more which encompass us to a whole range of emotional experiences (Markwick et al, 2003). It can be minor or major depending on the perception of the person experiencing the loss and with the right support the person can overcome the loss.
People with learning disabilities will experience many losses and are often denied the opportunity to go through the grieving process associated with loss. This is due to overprotection from carers who are unable to cope with the reactions to the loss (Jukes et al, 2003). Secondly carers may misrepresent or unrecognised the loss the person has encountered due to communication difficulties (Murray-Parkes et al, 1998). Having observed the individual chosen I have selected choice as his loss as this is a fundamental human right (O’Brien et al, 1999).
Many people with learning disabilities have encountered the denial of choice over the years, especially those who have lived in institutions and hospitals long term (Carnaby, 2002). Choice is very high on the political agenda, the government recognises the importance of allowing people with learning disabilities the right to make choices and to be supported were needed through advocacy. For confidentiality issues the individual’s name has been changed, therefore he will be known as ‘J’. J is thirty-seven years old and has lived in full-time care since the age of thirteen.
He has been living in his current home for the past two years which is a high dependency unit for people with learning disabilities. From the age of six he was diagnosed with Lennox-Gastaut Syndrome (LGS) a severe type of epilepsy with no known cure. J reached all his developmental milestones upto him having his first seizure at the age of six. He then started to show signs of regression leading to the onset of unacceptable behaviour, such as uncontrollable screaming and aggressive tendencies towards family members.
Glauser (2002) found that the severity of seizures, frequent injuries, developmental delays, and behavioural problems take a large toll on even the strongest family structures. At thirteen his parents could no longer cope with his behaviour and this was why he was placed into care. From his first seizure J and his family have suffered many losses. Turnbull (2004, pg 121) suggests that personal choice defines and expresses an individuals’ total being if this is taken away from them they encounter many more losses, such as his rights to independence, self-dignity, self-esteem and self-identity.
The most profound loss for his parents is a son that will never be able to participate in family activities. J has lost his place in the family, he is not only a son but a brother and an uncle and this could cause upset to him and his family as he will never take on the roles due to his severe learning disability and syndrome. As J deteriorates because of the syndrome he is showing signs of lost interest in his family when they visit. Two years ago he often asked when his parents were coming and enjoyed their visits.
However on recent occasions J has paid little attention when they visit and stays in his bedroom. Choice can be defined in a number of ways such as the ‘act of an individual’s selection of a preferred alternative from among several familiar options’ or as ‘a response to a situation, where the response is one of a number which is possible to that situation’. (Jackson and Jackson, 1998 pg 22) Markwick et al (2003) and Tait and Genders (2002) found that the range of choices made by people with learning disabilities could be the result of a range of factors.
The environment where J lives can restrict his choices as there are not always enough carers to assist him on a one-to-one basis. There are also a range of individual’s with learning disabilities living there meaning limited resources and convenience of saving time have been used as a way of allowing his choices to be made by carers. Attitudes and assumptions are an enormous factor, carers feel that he is not capable of making choices and they feel they know what he would choose anyway and therefore do not offer him choices. Factors such as the effects his syndrome and medication have on him should be considered.
The Epilepsy Foundation in America (2003) found that anti-epileptic drugs lead to poor motivation, negative self-esteem, irritability, impulsiveness and disinhibition possibly producing behaviour problems and psychosis. This repeated disruption of consciousness interrupts memory and learning. Shorvon (2000) found that prolonged administration can have profound side effects, especially as the dosages are high quantities. Currently J is being administered the following medication to provide a drug management process for Lennox-Gastaut Syndrome.
Phenytoin, Levetiracem, Tegretol Retard, Diazepam and Clobazam are given to attempt to control the frequency of his seizures, Stesolid is given for status epilepticus, Olanzapine for the treatment of mania and Procyclidine for the extra-pyramidal side effects. When examining each of the side effects of the anti-epileptics in The British National Formulary (2003) it can be argued that due to aggression being documented within the lists, the drugs being given may be the cause of the escalation in his behaviour abnormalities.
When J’s seizures are well controlled then unacceptable behaviour increases, which is difficult to manage and when the seizures are not well controlled, the behaviour is settled. The effects the medication is having on J may be reducing his status epilepticus however from observing his seizure charts it would appear that J has a minimum of three seizures a day upto thirty seizures in two hours. He is less able to care for his own needs, rarely has an adequate diet and sleeps most of the day. His personality and cognition have deteriorated and making choices are more difficult for him to advocate for himself.
Consequently this makes the management particularly complex for the nurse and the multi-disciplinary team who are involved in his care. The seizures cause temporary loss of function in one or more parts of the brain. If these parts are involved with understanding, organisation and communication processes then difficulties in using language can result. These difficulties can be severe, causing general delay in language development or a disordered pattern of language abilities (Parkinson, 1995).
This makes it difficult for J when he’s had a seizure as his verbal communication is slurred and disordered which can last for several days. Care-staff find it difficult to understand him and will make decisions on his behalf causing J to become distressed. This will often lead to violent behaviour towards staff, for example when he does not want a bath he will fling his arms about and push staff. This means staff are reluctant to take risks with him from fear of being harmed. Swain et al (2004) found that in the western culture the mind is seen as the seat of the autonomous self and individuality.
To experience impairment of the mind then is, in this culture at least to be seen to lose all, or critical part of self, and the autonomy and independence that goes with it. Choice should not be restricted by society’s barriers and attitudes. Barker et al, (1991) found that such protection ensured that people with a learning disability were denied almost any measure of personal autonomy and control over their own lives, as they were largely seen as incapable of exercising any degree of choice.
It may be important to consider that due to J’s syndrome he may lack the cognitive ability to comprehend what is being said to him and may not understand (Brown et al, 2003). Many people with learning disabilities face difficulty in executive functioning skills, such as organizational and planning abilities, mental flexibility and task initiation. These functioning skills are fundamental to making effective decisions and choices (Learning Disability Organisation, 2004).
As a result of this he is often not involved in his own life because of the challenges this produces on carers. By not allowing J to develop his choices he is unable to fulfil personal autonomy which has been identified as one of the basic human needs of people (Ramcharan et al, 1997). From discussing the causes of his loss it could be argued that his loss has nothing to do with his learning disability but the environment he is living in. I will now analyse the nurse’s role in supporting J in developing choices.
The nurse needs to understand how the syndrome affects him if they are going to support him develop any form of choice-making. Persaud and Jaycock (2001) suggest that care at its best, empowers’, comforts, sustains, validates, creates freedom, promotes relationships and confirms identity. The process of planning care for J requires an in-depth assessment from a holistic point of view. Holistic nursing considers the person’s physical, psychological and social conditions when treating an illness rather than just dealing with the condition itself (Pearson et al, 1996).
The collaboration with the Multi-Disciplinary Team is rudimentary to ensure J receives appropriate care. The team is made up of his nurse, doctor, speech and language therapist, the occupational therapist, psychologist, his key-worker, and his family. By involving his family in meetings and any decisions this means his family are able to support J whilst he is staying in the unit. The team will be able to look at ways to help J develop and promote his choice-making skills, consider the problems he is having and support care-staff through training and education.
The Learning Disability Organisation (2004) state that choice is a ‘human right and even though no-one can exercise unlimited choice, it is fundamental to self-determination and empowerment. ‘ Choices can open up new opportunities for learning and give people more control over their lives. It must not be seen as an optional extra to be attempted when the basics of care are completed. Grandis et al (2003) suggest that facilitating choice is one of the identified key roles in learning disability nursing. The nurse needs to work in partnership with J and help him to make choices and increase personal autonomy.
The nurse must treat him as an individual and support him in a way that is appropriate to his needs. J should have the support and opportunity to be the person he wants to be no matter where he is. The legal and ethical complications mean that by law J must be assessed to see if he is competent or not to make his own choices, this is known as the ‘assessment of competence. ‘ It should involve observations of J, his past history of choices, talking to his family and discuss with the multi-disciplinary team (North West Training Development Team, 1995).
Tate and Genders (2002) suggest that the assessment enables the nurse to make a judgement on J’s physical and mental capacities. This involves the ability and awareness that a choice is being offered and if he can weigh up the options received to make an informed choice. After the assessments J’s nurse will be able to consider the level of choices J is able to make. He must have adequate information available to make choices. Opportunities and encouragement to make choices should be within the context of acceptable risks and constraints of living with others.
The nurse must safeguard any limitations J has and explain why any choices have been limited. The North West Training Department Team (1995) suggests that J should be allowed to change his decisions and staff should monitor situations regularly in-case his preferences change. As well as assessing his competence in making choices the nurse could eliminate any other factors which could be contributing to his loss. This could involve the usage of primary health-care services such as the dentist to see if he has any problems with his teeth.
The nurse could also have his ears and eyes tested to rule out any other problems which are stopping him from participating in making choices. For example, if he can not hear what is being said it could be stopping him from communicating his choices. Good communication skills are indicative to form worthy relationships with other health care professionals, J and his family. This means the nurse needs to ensure what is being said is understood through the usage of clear and selective methods of communication. J finds it difficult to communicate verbally due to the syndrome and seizures.
The nurse must be aware of factors that could lead to client disempowerment such as not responding to expressions of choice. When he is verbal he uses limited words and shouts. It would be beneficial to work with the speech and language therapist to find an effective way to communicate with James. The Profound and Multiple Learning Disabilities Network (2002 pg 9) state that ‘people with profound disabilities may use a range of non-verbal means such as facial expressions and body language to communicate and will be highly reliant on others to interpret these and enable them to be involved in choices and decisions’.
Alternative methods such as the Picture Exchange Communication System, Tangible Symbols that resemble the object through touch or Objects of Reference, where the actual objects are used, are all ways to help J find a way to communicate (Gates, 2003). The nurse then needs to ensure all care-staff receive appropriate training in the selected method of communication; this will enable them to understand his requests. By allowing him time to develop a communication method is a step to helping him overcome his loss (Carnaby, 2002).
If the nurse finds J is still having difficulty in communicating then it would be beneficial to contact an independent advocate to represent him. Carers need to look for imaginative and challenging ways to encourage J to be active in making choices. If he is not given the stimulation needed he will lose the capacity to make choices. By using events and objects that are relevant to his daily activities such as his parents visiting him and his photographs could be used as a basis for choices, opportunities for learning and enhancing personal development.
Photos depicting options have been helpful in presenting choices for people with learning disabilities (NWTDT, 1995). The nurse could look at low risk activities which could interest him, such as visits to snoozelum rooms, music therapy, hand and body massaging and aromatherapy as these will encourage J to make choices, communicate with others and promote positive learning without causing him too much disruption if he was to have any seizures
. The nurse and carers should be encouraged to see choice-making as part of the process of developing positive and successful therapeutic relationships with J. J’s nurse and key-worker are able to observe J preferences as different experiences are offered and his responses can be recorded. Once these choices have been identified his key-worker could produce a life-book which could be used as a resource for staff to see what his needs and preferences are. The nurse should consider that J has not had opportunity to express his choices it could be better to work on simple choices such as which drink he would like and help him build upto the harder choices such as where he would like to go.
If J is to make choices based around his daily routine, then a clear structure is needed to support him. By using the environment around J the care-staff are able to promote positive choices. Once he has made a choice his carer should help him carry them out. Sometimes we all make bad choices but we accept them and learn from them. J must be allowed to explore bad choices with support from carers and not be excluded because the carer does not agree. Every choice carries implications and risks, the carers should discuss any issues with J and his nurse to allow any decisions to be made.
If the carer finds it difficult to except a decision made by J then they must allow another carer to take over to avoid disruption. Carr and Collins (1998) suggest that when providing J with choice allow the task to be given in small steps and provide him time to process the options available. His carers will need to consider that choice-making is difficult and that if J is given too many options he may not be able to process the information and this could cause him aggravation, upset and the refusal of wanting to be active in his daily choices, also his seizures could increase due to the stress of coping with too many choices.
Currently the staff see all his behaviour as being unacceptable but if the behaviour is treated as a communicative method this may be a step to understanding his preferences e. g. if he pushes his plate away it could be that he has finished not because he is being bad and when he shouts its because he wants them to understand what he wants. Finally, The Human Rights Act 1998 (O’Brien et al, 1999 pg 155) is in place so that J has rights to make decisions.
Courts can exercise a protective duty of care towards people who have a learning disability to allow others to make decisions for him to avoid risks and serious incidents, this being the trust he is living under. Therefore some choices are controlled for his own safety such as not being able to go out when he wants to. However, the nurse should continue to support J with his choices calculating the risks where necessary. To conclude, the nurse has an important role to play in enabling choices for J.
It will also be down to the way J copes which is dependent on his syndrome and learning disability, the support systems in place and access to professional help where required. Accepting and developing the modes of communication as forms of self-advocacy, and building in other sources and models of advocacy as a right, rather than an option are potential strategies in increasing J choice-making. By allowing J to make choices he is able to participate in the community around him. Due to his syndrome and severe learning disability he will always require support from health care staff and the multi-disciplinary team.
However, an equal balance needs to be in-place when supporting J this is between independence and dependence, this will allow him time to make choices and discuss them if risks are causing concern. It could be argued that this isn’t the right environment for him, as carers are unable to provide him with one-to-one care which is needed to support J especially as he is deteriorating. Staff training, policies and responsibilities should be in-place to ensure J choices. The more control J has over his life, the more satisfaction he is likely to experience.