Solari, A., Giordano, A., Sastre-Garriga, J., Köpke, S., Rahn, A., Kleiter, I., Aleksovska, K., Battaglia, M., Bay, J., Copetti, M., Drulovic, J., Kooij, L., Mens, J., Meza Murillo, E., Milanov, I., Milo, R., Pekmezovic, T., Vosburgh, J., Silber, E., Veronese, S., Patti, F., Voltz, R. and Oliver, D. (2020). EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis. Journal of Palliative Medicine [Online]. Available at: https://doi.org/10.1089/jpm.2020.0220.
Background and Purpose: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. Methods: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients–Intervention– Comparator–Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform deﬁnition of severe MS exists: in this guideline, constant bilateral support required to walk 20m without resting (Expanded Disability Status Scale score >6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised. Results: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient’s wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised. Conclusions: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efﬁcacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.
Oliver, D. (2019). Palliative care in motor neurone disease: where are we now?. Palliative Care: Research and Treatment [Online] 12. Available at: https://doi.org/10.1177/1178224218813914.
Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.
Oliver, D. (2018). Improving patient outcomes through palliative care integration in other specialised health services: what we have learned so far and how can we improve?. Annals of Palliative Medicine [Online] 7:S219-S230. Available at: https://doi.org/10.21037/apm.2018.05.05.
Palliative care has been increasingly shown to improve patient outcomes, in particular symptom management, quality of life and patient and family satisfaction. This has been shown within the care of people with cancer, neurological disease and heart failure but the methods by which palliative care is introduced earlier in the diagnosis is still complex. There are different models of increasing integration—care solely by the specialist, referral to other professionals or members of the team as necessary or an integrated model where palliative care interventions occur early in the disease progression. The evidence for the effectiveness of early involvement is being developed. The challenge for the future is increasing the awareness of professionals, patients and families that palliative care may be helpful and may improve the quality of life, and maybe the survival, of patients. The complex team interactions need to be acknowledged and all professionals involved to be focussed on improving the outcome for the patient and family.
Köpke, S., Giordano, A., Veronese, S., Christin Rahn, A., Kleiter, I., Basedow-Rajwich, B., Fornari, A., Battaglia, M., Drulovic, J., Kooij, L., Koops, J., Mens, J., Meza Murillo, E., Milanov, I., Milo, R., Patti, F., Pekmezovic, T., Sastre-Garriga, J., Vosburgh, J., Voltz, R., Bay, J., Oliver, D. and Solari, A. (2018). Patient and caregiver involvement in the formulation of guideline questions: findings from the European Academy of Neurology guideline on palliative care of people with severe multiple sclerosis. European Journal of Neurology [Online]. Available at: https://doi.org/10.1111/ene.13760.
Hussain, J., Allgar, V. and Oliver, D. (2018). Palliative care triggers in progressive neurodegenerative conditions: An evaluation using a multi-centre retrospective case record review and principal component analysis. Palliative Medicine [Online] 32:716-725. Available at: https://doi.org/10.1177/0269216318755884.
The use of specific triggers has been suggested to help identify patients with progressive neurological disease who would benefit from palliative care.
This study aimed to improve the evidence base for the use of triggers for patients with progressive neurological disease.
An evaluation of palliative care services was undertaken using a retrospective case note review of the timing and presence of triggers in the last 2?years of life.
A total of 12 specialist palliative care units across the United Kingdom provided data from 300 patients: mean patient age 70?years, 50% male, diagnoses included motor neurone disease 58%, Parkinson’s disease 17% and Parkinson’s Plus syndromes 12%.
There was a high burden of triggers – 17 in the last 2?years of life and 10 in the last 6?months of life. The most frequent triggers were deteriorating physical function, complex symptoms and dysphagia. Four factors were found to explain 64% of the total variance:
Factor 1 – Deterioration in physical function, dysphagia, significant complex symptoms and pain;
Factor 2 – Weight loss and respiratory symptoms;
Factor 3 – Recurrent infections and cognitive decline;
Factor 4 – Aspiration pneumonia.
Cox regression analyses found different triggers were associated with survival from diagnosis versus survival from referral to palliative care. Different triggers were also associated with survival for different neurological conditions.
This study demonstrates that there is a high burden of triggers in the last months and years of life and that these could potentially be reduced to fewer components. Prospective studies assessing which triggers are useful for different conditions are now required.
Oliver, D., Radunovic, A., Allen, A. and McDermott, C. (2017). The development of the UK National Institute of Health and Care Excellence evidence-based clinical guidelines on motor neurone disease. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration [Online] 18:313-323. Available at: https://doi.org/10.1080/21678421.2017.1304558.
The care of people with motor neurone disease / amyotrophic lateral sclerosis is often complex and involves a wide multidisciplinary team approach. The National Institute for Health and Care Excellence (NICE) in the UK have produced an evidence based guideline for the management of patients. This has made recommendations, based on clear evidence or consensus discussion. The evidence is often limited and areas for further research are suggested.
Forrester-Jones, R., Beecham, J., Barnoux, M., Oliver, D., Couch, E. and Bates, C. (2017). People with intellectual disabilities at the end of their lives: The case for specialist care?. Journal of Applied Research in Intellectual Disabilities [Online] 30:1138-1150. Available at: http://dx.doi.org/10.1111/jar.12412.
Background: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided.
Method: Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardized questionnaires and costs analysis was utilized.
Results: We found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organization.
Conclusion: Whilst the philosophical arguments around “specialist” care persist, this service fills a gap in intellectual disability care provision.
Veronese, S., Gallo, G., Valle, A., Cugno, C., Chio, A., Calvo, A., Cavalla, P., Zibetti, M., Rivoiro, C. and Oliver, D. (2017). Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: Ne-PAL a pilot randomized controlled study. BMJ Supportive and Palliative Care [Online] 7. Available at: http://dx.doi.org/10.1136/bmjspcare-2014-000788.
Background This study analysed the impact on palliative care outcomes of a new specialist palliative care service for patients severely affected by amyotrophic lateral sclerosis (ALS/MND), multiple sclerosis, Parkinson's disease and related disorders (multiple system atrophy progressive supranuclear palsy, MSA-PSP).
Methods The design followed the Medical Research Council Framework for the evaluation of complex interventions. A phase II randomised controlled trial (RCT) was undertaken comparing an immediate referral to the service (FT, fast track) to a 16-week wait (standard track (ST), standard best practice) using a parallel arm design. The main outcome measures were Quality of Life (measured with Schedule for the Evaluation of Individual Quality of Life Direct Weight, SEIQoL-DW) and burden of the carers (Caregivers Burden Inventory, CBI), with secondary outcomes of symptoms, psychosocial and spiritual issues.
Results 50 patients severely affected by neurodegenerative conditions and their informal family carers were randomised: 25 FT, 25 ST. At baseline (T0), there were no differences between groups. 4 patients died during the follow-up (2 FT, 2 ST) and 2 FT patients dropped out before the end of the study. After 16?weeks (T1), FT participants scored significant improvement in the SEIQoL-DW index, pain dyspnoea sleep disturbance and bowel symptoms.
Conclusions This exploratory RCT provides evidence that no harm was experienced by SPCS for patients severely affected by neurodegenerative disorders. There was an improvement in quality of life and physical symptoms for neurological patients in palliative care. Caregiver burden was not affected by the service.
Aoun, S., Breen, L., Oliver, D., Henderson, R., Edis, R., O’Connor, M., Howting, D., Harris, R. and Birks, C. (2016). Family carers’ experiences of receiving the news of a Motor Neurone Disease: a national survey. Journal of the Neurological Sciences [Online] 372:144-151. Available at: http://dx.doi.org/10.1016/j.jns.2016.11.043.
Family carers have a central role in the care and support of people with MND and face the challenges of the disease
from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected.
This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction
with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia
(2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for
communicating bad news.
Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery
of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm
and caring, satisfaction with the amount and content of information they received and relevant supports, and a
plan for following up support. Conversely those who rated the neurologist's skills as below average commented
on the difficulties they encountered and the long term emotional stress engendered by poor communication.
The study emphasises previous research that suggested that neurologists may require education and training in
communicating the diagnosis and this should include family carers as a vital member in MND care.
Aoun, S., Breen, L., Edis, R., Henderson, R., Oliver, D., Harris, R., Howting, D., O, Connor, M. and Birks, C. (2016). Breaking the news of a diagnosis of motor neurone disease: a national survey of neurologists’ perspectives. Journal of Neurological the Sciences [Online] 367:368-374. Available at: http://dx.doi.org/10.1016/j.jns.2016.06.033.
Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014).
73 neurologists responded to this national survey (50.4% response rate). Nearly 70% of neurologists reported finding it “somewhat to very difficult” communicating the MND diagnosis, and 65% reported feeling moderate to high stress and anxiety at the delivery of diagnosis. Compared to international guidelines, areas for improvement include length of consultation, period of follow up and referral to MND associations. Two-thirds of neurologists were interested in further training to respond to patient's emotions and development of best practice guidelines.
This is the first national study to provide a comprehensive insight into the process of delivering the MND diagnosis from the neurologists' perspective and to make comparisons with those of patients and the international guidelines. This study forms the basis for developing protocols to improve communication skills and alleviate the emotional burden associated with breaking bad news.
Oliver, D. and Veronese, S. (2016). Symptomatic management of neurodegenerative disease in the elderly. Progress in Palliative Care [Online] 25:11-16. Available at: http://dx.doi.org/10.1080/09699260.2016.1193968.
The care of elderly people with progressive neurodegenerative disease is often complex and palliative care may be helpful from soon after diagnosis to enable the quality of life to be maintained as much as possible. Palliative care may be involved in an episodic way, as new problems and issues are faced, throughout the disease progression. There are many issues which require careful assessment, including symptoms, psychological, and social aspects of care. This may include the assessment of cognitive change and ensuring that symptoms and issues are addressed correctly, even if the person cannot communicate or is cognitively compromised. This care will also include carers, spouses and families, professional carers, and carers within residential and nursing homes. Patients and carers may need ongoing support, to cope with the multiple and continual losses faced within neurological disease progression, with the complex interaction with other comorbidities and the effects of ageing. As the progression continues the recognition of end of life, through the assessment of triggers, is important so that all can be prepared for dying and death.
Vanopdenbosch, L., Oliver, D. and Kass, J. (2016). Palliative care in multiple sclerosis. Continuum : Lifelong Learning in Neurology [Online] 22:943-946. Available at: http://dx.doi.org/10.1212/CON.0000000000000321.
Collaboration between the neurologist and palliative care team in the care of patients with severe demyelinating disease can result in improved patient care, and discussion of the complex ethical issues that arise when a patient expresses a wish to die may be rewarding for both patients and caregivers.
Faull, C. and Oliver, D. (2016). Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals. BMJ Supportive and Palliative Care [Online] 6:144-146. Available at: http://dx.doi.org/10.1136/bmjspcare-2016-001139.
Oliver, D. (2016). Palliative care for patients with motor neurone disease: current challenges. Degenerative Neurological and Neuromuscular Disease [Online] 16:65-72. Available at: https://dx.doi.org/10.2147/DNND.S85103.
Motor neurone disease is a progressive disease, and the patient and his/her family face many challenges during the disease progression, with increasing weakness and multiple losses of function. The provision of care for these patients and their families is equally challenging, anticipating and responding to the person's needs. There are increasing challenges as more is understood about the disease and its management, including the genetic basis, cognitive change, the use of interventions such as ventilatory support, and gastrostomy. There is also an increasing need to ensure that the later stages are recognized so that all can be more prepared for the end of life, including recognition of deterioration and end of life, advance care planning, symptom management and psychosocial care at the end of life, and coping with requests for assisted dying. Careful assessment and good multidisciplinary team (MDT) work can enable patients and their families to have as good a quality of life as possible, and allow a peaceful death of the patient.
Tuffrey-Wijne, I., Wicki, M., Heslop, P., McCaroon, M., Todd, S., Oliver, D., de Veer, A., Ahlstrom, G., Schaper, S., Hynes, G., O’Farrell, J., Adler, J., Riese, F. and Curfs, L. (2016). Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique. BMC Palliative Care [Online] 15. Available at: http://dx.doi.org/10.1186/s12904-016-0108-5.
Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe.
A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance.
A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities.
The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.
Oliver, D., Borasio, G., Caraceni, A., de Visser, M., Grisold, W., Lorenzl, S., Veronese, S. and Voltz, R. (2016). A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. European Journal of Neurology [Online] 23:30-38. Available at: http://www.dx.doi.org/10.1111/ene.12889.
BACKGROUND AND PURPOSE:
The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families.
A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations.
Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point).
The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care.
Aoun, S., Breen, L., Howting, D., Edis, R., Oliver, D., Henderson, R., O’Connor, M., Harris, R. and Birks, C. (2016). Receiving the news of a diagnosis of motor neurone disease: what does it take to make it better?. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration [Online] 17:168-178. Available at: http://dx.doi.org/10.3109/21678421.2015.1111907.
Our objectives were to identify the experiences of people with MND in receiving the diagnosis and to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis was delivered to them. An anonymous postal survey was facilitated by all MND associations in Australia, in 2014, and centred on the SPIKES protocol for communicating bad news. Of the patients (n?=?248, response rate 29%), 36% were dissatisfied with the delivery of the diagnosis and gave low ratings on the ability/skills of their neurologists to deliver the diagnosis. It was evident that the longer the patients spent with their neurologists during breaking such bad news, the more they were satisfied and the higher they rated the neurologists' abilities/skills. The largest significant differences between neurologists rated as having high or low skills in delivering the diagnosis were in four domains: 1) responding empathically to the feelings of patient/family; 2) sharing the information and suggesting realistic goals; 3) exploring what patient/family are expecting or hoping for; and 4) making a plan and following through. In conclusion, with over one-third of patients dissatisfied with their experience, there is room for improvement in the practice of neurologists in specified areas that could form the basis for changing practice, and the development of standards and protocols likely to have implications at the international level.
Tuffrey-Wijne, I., McLaughlin, D., Curfs, L., Dusart, A., Hoenger, C., McEnhill, L., Read, S., Ryan, K., Satgé, D., Strasser, B., Westergard, B. and Oliver, D. (2015). Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods. Palliative Medicine [Online] 30:446-455. Available at: http://dx.doi.org/10.1177/0269216315600993.
People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs.
To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version.
SETTING AND PARTICIPANTS:
Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members' networks.
A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents' comments, several items were modified and one item was deleted.
This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
Phelps, K., Regen, E., Oliver, D., McDermott, C. and Faull, C. (2015). Withdrawal of ventilation at the patient’s request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK. British Medical Journal [Online]. Available at: http://dx.doi.org/10.1136/bmjspcare-2014-000826.
Background Ventilatory support has benefits including prolonging survival for respiratory failure in motor neurone disease (MND). At some point some patients may wish to stop the intervention. The National Institute of Health and Care Excellence (NICE) guidance recommends research is needed on ventilation withdrawal. There is little literature focusing on the issues doctors encounter when withdrawing ventilation at the request of a patient.
Aim To identify and explore with doctors the ethical and legal issues that they had encountered in the withdrawal of ventilation at the request of a patient with MND.
Method A retrospective thematic analysis of interviews of 24 doctors (including palliative care, respiratory, neurology and general practice) regarding their experiences with withdrawal of ventilation support from patients with MND.
Results Respondents found withdrawal of ventilation at the request of patients with MND to pose legal, ethical and moral challenges in five themes: ethical and legal rights to withdrawal from treatment; discussions with family; discussions with colleagues; experiences of legal advice; issues contributing to ethical complexity. Though clear about the legality of withdrawal of treatment in theory, the practice led to ethical and moral uncertainty and mixed feelings. Many respondents had experienced negative reactions from other healthcare professionals when these colleagues were unclear of the distinction between palliation of symptoms, withdrawal of treatment and assisted death.
Conclusions Legal, ethical and practical guidance is needed for professionals who support a patient with MND who wishes to withdraw from ventilation. Open discussion of the ethical challenges is needed as well as education and support for professionals.
Nixon, I., Popkiewicz, F., Banerjee, S., Vincent-Smith, L. and Oliver, D. (2015). Using a joint approach to non-invasive ventilation in motor neurone disease. European Journal of Palliative Care 22:182-184.
Imogen Nixon, Faustina Popkiewicz, Sandip Banerjee, Lisa Vincent-Smith and David Oliver have assessed how non-invasive ventilation (NIV) was used in patients with motor neurone disease in the Medway area. They found that most recommendations made by the National Institute for Health and Care Excellence had been met thanks to the adoption of a multidisciplinary approach.
Watermeyer, T., Brown, R., Sidle, K., Oliver, D., Allen, C., Karlsson, J., Ellis, C., Shaw, C., Al-Chalabi, A. and Goldstein, L. (2015). Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration [Online] 16:316-325. Available at: http://dx.doi.org/10.3109/21678421.2015.1051990.
Up to 50% of patients with amyotrophic lateral sclerosis (ALS) show mild to moderate cognitive-behavioural change alongside their progressive functional impairment. This study examines the relative impact of patients' disease symptoms, behavioural change and current executive function and social cognition abilities on psychosocial outcomes in spouse caregivers of people with ALS. Thirty-five spouse caregivers rated their own levels of depression and anxiety, subjective burden and marital satisfaction. Caregivers also rated their partner's everyday behaviour. The patients were assessed for disease severity and cognitive function, with composite scores derived for executive function and social cognition. Regression analyses revealed that caregiver burden was predicted by the severity of patients' limb involvement and behavioural problems. Depression was predicted by patients' limb involvement, while behavioural problems and patient age predicted caregiver anxiety. Current marital satisfaction was predicted by patient behavioural problems beyond the level of pre-illness marital satisfaction. In conclusion, the study highlights the potential impact of ALS patients' functional impairment and behavioural change on ALS caregivers' psychosocial functioning. Clinical communication with ALS families should emphasise both physical and psychological challenges presented by the disease.
Veronese, S., Gallo, G., Valle, A., Cugno, C., Chio, A., Calvo, A., Rivoiro, C. and Oliver, D. (2015). The palliative care needs of people severely affected by neurodegenerative disorders:a qualitative study. Progress in Palliative Care [Online] 23:331-342. Available at: http://dx.doi.org/10.1179/1743291X15Y.0000000007.
Specialist palliative care services are often involved in the care of people with progressive neurological disease, in particular amyotrophic lateral sclerosis. However, the particular needs of people with advanced and progressive neurological disease are not well known. A qualitative approach was used, interviewing people with advanced amyotrophic lateral sclerosis/motor neurone disease (ALS/MND), multiple sclerosis (MS), Parkinson's disease (PD), and multiple systems atrophy (MSA) and their family carers to ascertain their particular needs. Focus groups of health and social care professionals allowed a professional view of the needs. People with progressive disease have many, difficult and distressing symptoms: physical, including pain, movement issues, swallowing and speech problems, psychological, feelings of being abandoned and of anxiety and depression, social, of isolation, of being a burden and of financial issues, and spiritual, of loss of hope and the meaning of life as they approach death. These issues could be helped by the development of a palliative care approach and the involvement of a specialist palliative care team, which was supported by patients, carers, and professionals.
Watermeyer, T., Brown, R., Sidle, K., Oliver, D., Allen, C., Karlsson, J., Ellis, C., Shaw, C., Al-Chalabi, A. and Goldstein, L. (2015). Executive dysfunction predicts social cognition impairment in amyotropic lateral sclerosis. Journal of Neurology [Online] 262:1681-1690. Available at: http://dx.doi.org/10.1007/s00415-015-7761-0.
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder of the motor system with recognised extra-motor and cognitive involvement. This cross-sectional study examined ALS patients' performance on measures requiring social inference, and determined the relationship between such changes and variations in mood, behaviour, personality, empathy and executive function. Fifty-five ALS patients and 49 healthy controls were compared on tasks measuring social cognition and executive function. ALS patients also completed measures examining mood, behaviour and personality. Regression analyses explored the contribution of executive function, mood, behaviour and personality to social cognition scores within the ALS sample. A between-group MANOVA revealed that, the ALS group was impaired relative to controls on two composite scores for social cognition and executive function. Patients also performed worse on individual tests of executive function measuring cognitive flexibility, response inhibition and concept formation, and on individual aspects of social cognition assessing the attribution of emotional and mental states. Regression analyses indicated that ALS-related executive dysfunction was the main predictor of social cognition performance, above and beyond demographic variables, behaviour, mood and personality. On at least some aspects of social cognition, impaired performance in ALS appears to be secondary to executive dysfunction. The profile of cognitive impairment in ALS supports a cognitive continuum between ALS and frontotemporal dementia.
Vanopdenbosch, L. and Oliver, D. (2015). An initial survey on neurological palliative care. European Journal of Neurology 22:282-282.
Oliver, D. (2014). Palliative Care for People with Progressive Neurological Disease: What is the role?. Journal of Palliative Care 30:298-301.
Although patients with neurological disease do receive palliative care the involvement of palliative care may only occur in the final stages of the illness trajectory, when communication and cognition may be affected and the influence of palliative care is limited. Palliative care services should be made available throughout the disease trajectory according to the specific needs of individual patients and their families The involvement of palliative care may be episodic throughout the disease progression as new issues emerge and as various decisions have to be made. Patients with a number of conditions may have little need for palliative care for long periods, but there will be occasions, especially as the end of life approaches, when the wider multi- disciplinary approach is required, so that their quality of life may be maintained and they are able to die peacefully.
Cawley, D., Billings, J., Oliver, D., Kendall, M. and Pinnock, H. (2014). Potential triggers for the holistic assessment of people with severe chronic obstructive pulmonary disease: analysis of multiperspective, serial qualitative interviews. BMJ Supportive & Palliative Care [Online] 4:152-160. Available at: http://dx.doi.org/10.1136/bmjspcare-2013-000629.
Objectives: This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive
and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provoking useful actions.
Methods: A purposive sample of people with severe COPD, and their informal and professional carers, was recruited from primary/secondary care in Scotland. Indepth participant-led interviews allowed people to tell their illness story. Events occurring throughout the individual’s account of the COPD journey were identified, and analysed thematically with regard to the meaning, visibility and use as potential
Results: Events identified from 92 transcripts (21 patients, 13 family carers, 18 professionals) punctuated the disease trajectory and crossed multiprofessional boundaries of care. These
reflected advancing disease (increasing carer burden, becoming housebound, appointment frequency, increasing burden of disease, shifting priorities of care) or were an intervention addressing the consequences of advancing disease (requesting disabled parking, home adaptations, hospital admissions). Despite being meaningful in terms of increasing disability, many were invisible to professionals. Others were isolated events symptomatic of wider, ongoing disability which could potentially have use as triggers.
Conclusions: Meaningful events can be identified within the story of COPD which reflect wider needs, are clearly visible to alert professionals, and be of use in terms of potentially guiding supportive interventions. To achieve this level of usefulness, services will need to promote health and social care integration with clear processes to facilitate holistic
assessment when a trigger is detected.
Faull, C., Rowe Haynes, C. and Oliver, D. (2014). Issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study. BMJ Supportive & Palliative Care [Online] 4:43-49. Available at: https://doi.org/10.1136/bmjspcare-2013-000470.
Background Non-invasive ventilation (NIV) is beneficial for respiratory failure in motor neurone disease (MND) but some patients may wish to stop the intervention. Guidance from the National Institute for Health and Care Excellence recommends that research is needed on NIV withdrawal. There is little in the literature focusing on the issues doctors face when withdrawing NIV in this group.
Aim To identify issues and challenges that palliative medicine doctors encounter in relation to the withdrawal of NIV in MND patients.
Method An electronic questionnaire was sent to members of the Association of Palliative Medicine of Great Britain and Ireland. Participants rated how practically, emotionally and ethically challenging they found the process of NIV withdrawal.
Results 76 doctors responding had been directly involved in withdrawal of NIV at the request of a patient with MND. A high percentage rated the practical, ethical and emotional challenges as 7 or more on a 0–10 scale. Thematic analysis of the free text revealed some common difficulties. Lack of guidance on practical aspects of withdrawal, poor advance care planning and the need to support all involved to prevent conflict were recurrent themes. Statements relating to the emotional burden were diverse but suggest many palliative care doctors feel significant personal impact.
Conclusions The withdrawal of NIV in patients with MND appears to pose considerable challenges to palliative medicine doctors; emotionally, practically and to a lesser extent ethically. Development of guidelines and a clear ethical statement of conduct may help but emotional issues appear more complex.
Oliver, D. and Turner, M. (2010). Some difficult decisions in ALS/MND. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration [Online] 11:339-343. Available at: http://dx.doi.org/10.3109/17482968.2010.487532.
The physical and emotional damage caused by ALS creates ripples that reach a wide group of individuals beyond the patient. Decisions about care and end of life are never straightforward; solutions are always bespoke and must involve the wider multidisciplinary team. There is a need for awareness of how these discussions will be affected by personal attitudes, experience, culture and issues in our own professional and personal lives. The aim should be to respond to patient and family and be honest, sensitive, empathic, understandable and direct, with a constant balance of hope with realism. Finally, as professionals we have our own need for support and to be aware of our own feelings to prevent the very real threat of compassion fatigue (20). A strong multidisciplinary team is greater than the sum of its parts, and can provide robust internal support to its members, using their pooled expertise to serve patients and their families more effectively as a result.
Duplock, L., Forrester-Jones, R. and Oliver, D. (2009). Improving care for patients with intellectual disabilities. European Journal of Palliative Care 16:66-68.
The importance of investigating and addressing the needs of palliative care patients with intellectual disabilities (IDs) has been increasingly recognised in the past decade. The number of people with IDs in the aging population is increasing, with the result that there has been a rise in the number of people with IDs presenting with cancer, heart and respiratory disease, and dementia. Two recent studies have suggested methods and strategies, for implementation in palliative care services, to better support such patients.
Oliver, D., Bell, J., Gallagher, D., Hobbs, L., Newton, J., Rackham, C., Swannick, J. and Thompson, S. (2007). Development of a pathway to facilitate gastrostomy insertion for patients with MND. International Journal of Palliative Nursing 13:420-429.
A pathway has been developed using a multidisciplinary group from within specialist palliative care to ensure a comprehensive approach to the insertion of gastromy tubes for patients with motor neurone disease (MND) with swallowing difficulties. The pathway has ensured that there is a coordinated approach and the professionals involved are clear as to their responsibilities in the discussion and planning of the insertion, ensuring the best support for the patient and family.