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On 16 November our Spinal Injury team attended the 18th MASCIP (Multidisciplinary Association for Spinal Cord Injury Professionals) Conference "Contending with Complexity, managing increasing needs" at Loughborough University. It was an interesting and thought provoking day in which we heard a number of presentations on the ethical issues facing professionals working within Spinal Cord Injury (SCI).
Professor of Biomedical Ethics at the University of Warwick, Heather Draper, discussed the absence of literature on the subject of ethical issues and SCI but highlighted the potential tension between the means to achieving the goals set for people following SCI and themselves. The tension exists where the individual doesn’t always make a decision which will improve or promote their independence, at the same time there maybe reluctance for the individual to accept the consequences of these choices. A lot of personal effort is needed to achieve goals. Professor Draper discussed how forcefully you can persuade a patient to engage with their rehab goals and whether such paternalism can be justified. In the healthcare setting paternalism tends to be seen as negative but Professor Draper suggested that paternalism can be positive if promoting the patient’s ability to achieve their rehab goals.
It was interesting to hear about the ethical issues of using technology to overcome disability and whether it should be seen as a natural extension to existing technology, such as wheelchairs. The advantage of technology is that it gives greater independence and the opportunity to resume pre accident activities. Conversely, technology can lead to further stigmatisation since it is not suitable for everyone and requires a degree of personal effort which may not be acceptable or possible for all. The other concern raised was whether it may erode efforts made to increase access and raises ethical concerns about who controls the technology and issues of identity, particularly where advances are being made regarding brain implants. It may not be too far in the future when technology has replaced therapists but this seems to miss the point that the interaction between therapist and patient is a central part of the rehab process.
We heard a fascinating case study from Lorna O’Connor from the Spinal Injuries Unit for Northern Ireland [Link to http://www.belfasttrust.hscni.net/hospitals/MusgraveParkHospital.html] entitled "The chef who couldn’t eat". Lorna discussed a patient who was rendered tetraplegic following a horse riding accident and was dependent on 2 carers for all his activities of daily living. As a consequence of his injury he suffered from dysphagia (swallowing difficulties) which was likely to have been caused by damage to the cranial nerve during surgery following his accident. Due to his dysphagia the patient was at risk of aspiration if he swallowed food or fluids. When he came to the centre for rehab the key question was whether he could make the decision as to if he wanted to eat or drink. The patient was desperate to eat and reported being constantly hungry. He communicated that he understood the risk of aspiration; however the dilemma for the treating clinicians was the duty of care they owed to the patient versus patient centred care. The difficulty was that the patient could not feed himself and was reliant on others to feed him, who in the knowledge that doing so they were putting his life at risk. Other concerns included him having informed consent versus what he wants in the moment and the inconsistencies in his answers. The patient therefore continued to be PEG fed but the OTs introduced him to the kitchen where he was able to pass on his baking skills to others and, whilst unable to eat the products of their labour, it created a renewed interest in rehab and introduced him to assistive technology. The patient has recently published a cooking book!
Claire Guy, Operations Manager at the National Spinal Injuries Centre (NSIC), presented on how the healthcare sector can learn lessons from the aviation industry in what is known as "Black box thinking". A subject which Brethertons’ Head of Spinal Injury, Jon Rees, has read a lot about and discussed with healthcare workers at the Guttmann Conference earlier this year (See Jon’s blog on 33rd Guttmann Conference). For too long there has been a culture in the healthcare sector of feeling threatened by mistakes which in turn leads to staff being afraid to speak out when something goes wrong. Claire explained that in the healthcare setting there are subtle, but predictable patterns, and she’s calling for reforms to be put in place to ensure that there is a willingness and tenacity to investigate when something goes wrong. This could be facilitated through Schwartz rounds, which provides a safe and supportive environment to "collect and reflect" and discuss challenging situations. Claire discussed how a change in culture could result in a different approach to how healthcare staff deal with challenging patients, particularly applicable to the discharge process from Spinal Injury Centres.
Dr Kevin Jones, Clinical psychologist at the NSIC, provided an interesting talk on the importance of integration between physical and mental health within the NHS. He discussed how those with poor mental health tend to have poorer outcomes, prognosis and therefore quality of life. This in turn means that they tend to have increased service use which has an economic impact on the NHS. The systematic separation in the NHS of physical and mental health services compounds the problem.
In our experience, clients who have suffered a SCI, often don’t often seek help whilst at the SI centres, because they may still in the denial stage, and it is only when they are discharged home that they feel the need for psychological intervention. Whilst a patient of a SI centre is a patient for life, from the psychology point of view obtaining out patient support is often difficult. GPs of course have an obligation to refer patients for psychological support but waiting times are long and they won’t have access to the specialised input that they would receive from a SI centre. Increased access to out patient psychological services would be welcomed but, as ever, that seems unlikely with ever shrinking NHS budgets.