Advance care planning in dementia: recommendations for healthcare professionals

The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.

Reflections on palliative sedation

‘Palliation sedation’ is a widely used term to describe the intentional administration of sedatives to reduce a dying person’s consciousness to relieve intolerable suffering from refractory symptoms. Research studies generally focus on either ‘continuous sedation until death’ or ‘continuous deep sedation’. It is not always clear whether instances of secondary sedation (i.e. caused by specific symptom management) have been excluded. Continuous deep sedation is controversial because it ends a person’s ‘biographical life’ (the ability to interact meaningfully with other people) and shortens ‘biological life’. Ethically, continuous deep sedation is an exceptional last resort measure. Studies suggest that continuous deep sedation has become ‘normalized’ in some countries and some palliative care services. Of concern is the dissonance between guidelines and practice. At the extreme, there are reports of continuous deep sedation which are best described as non-voluntary (unrequested) euthanasia. Other major concerns relate to its use for solely non-physical (existential) reasons, the under-diagnosis of delirium and its mistreatment, and not appreciating that unresponsiveness is not the same as unconsciousness (unawareness). Ideally, a multiprofessional palliative care team should be involved before proceeding to continuous deep sedation. Good palliative care greatly reduces the need for continuous deep sedation.

A training needs analysis of admiral nurses to facilitate advance care planning in dementia

Education of health and social care professionals is essential in preparation to confidently and effectively support families affected by dementia to undertake advance care planning. This article describes a training needs analysis of Admiral Nurses, dementia specialists, in facilitating advance care planning for future care. Methods: A questionnaire survey was completed by Admiral Nurses attending end-of-life care masterclasses in 2017 and 2018. Both quantitative (years registered as a nurse, years as an Admiral Nurse and subjective level of confidence in completing advance care plannings) and qualitative data (interventions perceived to increase confidence) were collected. Findings: There were 75 completed responses (two incomplete returns). There was no correlation between levels of confidence and years registered as a nurse. However, there was a small positive correlation between confidence and number of years as an Admiral Nurse ( r = 0.23; p < 0.05). Themes identified qualitatively to enhance practice were advanced communication skills, supervised practice, resources to frame conversations and a guide and template for advance care planning. Conclusion: Although Admiral Nurses are specialists in dementia, several educational initiatives could be employed to better enable them to support advance care planning for families affected by dementia. This training needs analysis is contributed towards developing an educational intervention for Admiral Nurses to improve advance care planning support.

Palliative care and public health: an asymmetrical relationship?

Interest in the potential for public health and palliative care to work together is now widely established. Based on a mapping review of existing literature, we describe for the first time the ways in which public health has entered palliative care policy and practice and how this has been specifically articulated. We then go on to pursue analytical and critical lines of enquiry that are largely absent from the existing literature. We do this in three ways: (i) by considering why the link between public health and palliative care has become so ubiquitous within palliative care policy; (ii) by establishing how this has been constructed; and (iii) by exploring public health as a ‘reference discipline’ from which its ‘secondary deployment’ can become embedded inside another disciplinary field. From this, we develop a range of critical perspectives on the relationship between public health and palliative care by scrutinising its claims of utility and effectiveness and questioning the strength of the interdisciplinary interaction between the two disciplines. We see their relationship in a ‘cross disciplinary’ context which is still largely symbolic and tactical in nature. We conclude by considering the significance of these insights for policy and practice, with two possible scenarios. If the use of public health is essentially figurative and its resources are not unique, the particular and exclusive use of the term becomes insignificant. Progressive and effective policy and practice is possible, independent of any explicit public health label. If however public health is considered to have intrinsic and definable worth, we suggest that this currently asymmetrical association needs to be significantly developed with much higher levels of theoretical, practical and critical engagement between the two disciplines. Such work would result in more reflective and robust policy and practice.

The effectiveness of pancreatic enzyme replacement therapy for malabsorption in advanced pancreatic cancer, a pilot study

Advanced adenocarcinoma of the pancreas has a globally poor prognosis. One of the characteristic features of pancreatic cancer (PC) is pancreatic exocrine insufficiency (PEI). This leads to a malabsorption syndrome and subsequent digestive symptoms. Given the high prevalence of PEI and malabsorption in PC, empiric use of pancreatic enzyme replacement therapy (PERT) is recommended. The aim of this pilot study was to determine the potential efficacy of PERT in improving symptoms and quality of life in those with metastatic PC. The study recruited patients with advanced PC referred to a specialist palliative care service. Following an initial assessment, patients were commenced on pancrealipase 25,000IU (Creon) and reassessed after 1 week and 3 weeks post-initiation of supplementation. These assessments included demographics, malabsorption symptom checklist, and completion of two validated quality-of-life questionnaires, the European Organisation for Research and Treatment of Cancer QLQ-C30 and QLQ-PAN26. PERT was associated with statistically significant improvement of symptoms in both the general (QLQ-C30) and pancreatic cancer specific tool (PAN26). Within 1 week of PERT initiation, there was a reduction in diarrhoea scores (26 vs. 8, p<0.005), pancreatic and hepatic pain (47 vs. 33 and 24 vs. 11, respectively, p<0.05). After 3 weeks, there were significant improvements in pancreatic pain and bloating/gas symptoms (47 vs. 26 and 46 vs. 26, respectively, p< 0.005). PERT appears to have the potential to improve symptoms of malabsorption in patients with metastatic PC.

Palliative care in motor neurone disease: where are we now?

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.

Advance care planning in the context of clinical deterioration: a systematic review of the literature

Background: A Rapid Response Team can respond to critically ill patients in hospital to prevent further deterioration and unexpected deaths. However, approximately one-third of reviews involve a patient approaching the end-of-life. It is not well understood whether patients have pre-existing advance care plans at the time of significant clinical deterioration requiring Rapid Response Team review. Nor is it understood whether such critical events prompt patients, their families and treating teams to discuss advance care planning and consider referral to specialist palliative care services. Aim and design: This systematic review examined advance care planning with patients who experience significant clinical deterioration in hospital and require Rapid Response Team review. The prevalence of pre-existing advance directives, whether this event prompts end-of-life discussions, the provision of broader advance care planning and referral to specialist palliative care services was examined. Data sources: Three electronic databases up to August 2017 were searched, and a manual review of article reference lists conducted. Quality of studies was appraised by the first and fourth authors. Results: Of the 324 articles identified through database searching, 31 met the inclusion criteria, generating data from 47,850 patients. There was a low prevalence of resuscitation orders and formal advance directives prior to Rapid Response Team review, with subsequent increases in resuscitation and limitations of medical treatment orders, but not advance directives. There was high short- and long-term mortality following review, and low rates of palliative care referral. Conclusions: The failure of patients, their families and medical teams to engage in advance care planning may result in inappropriate Rapid Response Team review that is not in line with patient and family priorities and preferences. Earlier engagement in advance care planning may result in improved person-centred care and referral to specialist palliative care services for ongoing management.

Palliative Curriculum Re-imagined: A Critical Evaluation of the UK Palliative Medicine Syllabus

The UK Palliative Medicine Syllabus is critically evaluated to assess its relationship and relevance to contemporary palliative care policy and direction. Three criteria are employed for this review: (1) relevance to non-cancer dying, ageing, caregivers, and bereaved populations; (2) uptake and adoption of well-being models of public health alongside traditional illness and disease models of clinical understanding; and (3) uptake and integration of public health insights and methodologies for social support. We conclude that the current syllabus falls dramatically short on all 3 criteria. Suggestions are made for future consultation and revision.