The Annual Joint Conference of the Social Care Workforce Research Unit and Making Research Count at King’s College London and Age UK London, with support from the British Society of Gerontology was held on 11 February 2016 at King’s College London. Joan Rapaport reports.
Welcome and Introduction
Professor Jill Manthorpe, Director, Social Care Workforce Research Unit, explained that the focus of the conference was on good practice in the day-to-day delivery of palliative and end of life care. The Unit’s Longitudinal Care Work Study had highlighted the importance of collaborative working between health and social care agencies and ensuring staff were prepared and supported when working with people in the last stages of life. In spite of all the bad news about social care being ‘in crisis’ and of poor quality, research has shown that four out of five people describe positive experiences: ‘We can work on the one in five’.
End of Life Care for People with Dementia: After the Liverpool Care Pathway: Dr Nathan Davies, NIHR School for Primary Care Research Post-Doctoral Fellow
Dr Davies highlighted upward trends in the numbers of people living with dementia, the fact there was no cure for the disease and uncertainties around the length of life expectancy following diagnosis. The Liverpool Care Pathway had intended to provide spiritual, psychological and family guidance but had been discredited in media reports of bad experiences. To fill the void a catchy ‘rules-of-thumb’ approach built on the FAST initiative used to detect a suspected stroke had been conceived and applied to key areas of decision-making in dementia care identified by practitioners and family carers.
As one example, in terms of ‘eating and swallowing’ it was important to have an early conversation with the person with dementia and the family and help them to consider advance planning. In a case of ‘agitation and restlessness’, any underlying causes should be explored and changes made where possible: the effects of dementia might not be the primary cause. When ending life-sustaining treatment, ‘comfort’, ‘quality of life’ and ‘minimal disturbance’ should be the main guiding principles. At all times it was important to keep the family informed and integral to the care process. Dr Davies suggested that the rules-of-thumb principles provided a framework for asking relevant questions and triggering appropriate actions.
Dr Davies explained that the rules-of thumb model was about to be tested with five different teams in hospital, palliative care, community nursing and general practice settings. It was hoped that the research would later include care homes and family carers. He acknowledged that end of life scenarios were complex and suggested that the principles underpinning the ‘rules-of-thumb’ approach provided a framework for creative thinking. He hoped it was more accessible than customary procedural guidelines that are so often unread.
Improving palliative and end of life care for older people in community settings: Dr Catherine Evans NIHR/CNO Clinical Lecturer Palliative Care, Cicely Saunders Institute, King’s College London
Dr Evans described ‘palliative care’ as ‘living life well during advanced long term illness’. It was not ‘just about dying’. It works often in conjunction with a range of life sustaining treatments and provides pain relief and a family and patient support system. Dr Evans echoed Dame Cicely Saunders sentiments: ‘how people die remains in the memory of those who live on’. It was therefore of utmost importance to aim for a ‘good death’.
Based on provision of care, expenditure and training, the Quality of Death Index 2015 ranks the UK as the best place to die! However, this rosy picture is tarnished by the post-code lottery, as services are not evenly spread. Given ageing populations, care for chronic health conditions is in demand. In spite of a dramatic increase in the numbers of older people in the community 2001–2010, place of death has hardly changed. Centenarians are likely to die of pneumonia and ‘frailty’. Wider provision of anticipatory care is required to enable these people to remain where they are when they are on the point of death and not rushed into hospital.
A joint study by King’s College London and Sussex Community NHS Trust found that whereas a third of patients who participated were transferred to hospital as place of death, just over two thirds had wanted to die at home. In the largest proportion of those transferred, the patient had been in hospital for at least a week but under a month, before death. Respiratory disease and breathlessness had triggered the transfer. This suggests a window of opportunity exists for improved community practice.
Phase II of the study compared outcomes for older people with progressive illness and frailty receiving short-term integrated palliative care from palliative care specialists, community nurses and GPs with a similar group receiving usual care. Anxiety levels improved for those receiving integrated care but there was no similar change in respect of their physical health.
Qualitative interviews revealed fear of the term ‘palliative care’ and its implications. However, once team members were in place, people felt reassured by their availability and valued their listening skills. Advance care planning was acceptable for most, if sensitively approached. Dr Evans concluded the research findings suggest that to be effective, integrated professional working requires a skilled key worker to coordinate care.
Practical support during last years of life: Deb Hayes, Director of Individual Services, Age UK East London
Deb Hayes emphasized that Individual Services was practical and not clinical and linked with humanity and ‘the things we should all be doing for each other’. The project is funded by Continuing Healthcare money and is registered as a domiciliary care agency. Support workers are carefully selected. Compassion is an essential quality. Workers are paid the Living London Wage and travelling time is allowed. Visits are of at least an hour’s duration. The service user is introduced to three workers. The one the individual takes to most becomes the main worker with ‘an heir and a spare’ as backup. Support workers receive group supervision from a clinician every six weeks with the opportunity of additional individual supervision, if required.
The service provides a wide range of services including housework, shopping and personal care and can link with Age UK if help with legal advice and information is requested. Care of pets, dog walking and rehoming of pets, if required, feature as important tasks. The service works closely with medical and nursing teams and St Joseph’s Hospice Hackney when specialist end of life care is required. At all levels of care, the person’s former lifestyle and wishes are taken into account. Service user feedback is very positive and there is a waiting list for the service.
End of life care and bereavement: Brian Andrews, Chair, Lay Representatives Board, Pan London End of Life Alliance
Brian Andrews described a nightmare scenario regarding his late wife’s care and difficulties procuring timely services to ensure her wishes to die at home were honoured. It was only in her final few days with the arrival of a Marie Curie nurse who was able to meet his wife’s needs and also his own that a good home death was achieved. Brian said that three months’ bereavement counselling and family and professional support had helped him to survive.
Brian described how his experiences had led him to become a Marie Curie volunteer. This in turn led to him joining the Executive Committee and the development of the Pan London Lay Representatives Board served by sixteen people who have all experienced end of life care for someone close. The Board has brainstormed a huge list of good and bad experiences. Using an ‘action priority matrix tool’ that takes into account cost, likely impact and do-ability it has identified top priority areas for service delivery. These top ideas have been adopted by the Pan London Alliance and are embedded in the London End of Life Clinical Networks. Work to influence Commissioners’ guidelines is now in progress.
The quality of ‘compassion’: is personal experience necessary?
All of the speakers had experience of looking after a close relative in the community. However, Deb Hayes said that one of her most compassionate workers was in his early twenties with no prior care experience. In her view personal experience was not necessary.
Ethics’ Committees: does talking about death cause harm?
This question bothers ethics’ committees, perhaps needlessly. It was suggested that next time a project requiring discussion about end of life care was proposed, researchers should be accompanied to the committee meeting by a lay person able to talk about their end of life care wishes.
Earlier palliative care
There was broad agreement that palliative care should be introduced earlier than at present. However, sensitivity about the term and its import hindered this objective.
Dr Evans said that the joint study had changed its name from ‘palliative care’ to ‘palliative care and supportive care’ to remove the dread and shift the emphasis to living life well.
Are palliative care services discriminatory?
Are people with vascular dementia still discriminated against by palliative care services? Some people thought so. Dr Evans said that ITU and life support was still a neglected area. Palliative care in King’s College is being developed by psychosocial workers. The service is much in demand. Human Rights issues and barriers to palliative care need to be explored.
Funding dilemmas: health or social care?
Uncertainties as to whether a person’s needs are health or social care can delay funding. Deb Hayes said it was important to liaise closely with medical colleagues to ensure applications for health funding were well made.
Advance care planning
Advance care planning for medical and social care needs should take place as early as possible. Fluctuations in mental capacity should be taken into account.
Home death and views of the carer
Dr Evans cautioned that a carer could be frightened caring for someone dying at home. Marie Curie is a scarce resource. We need to be honest with carers and families and perhaps consider a hospice as an appropriate alternative. She reminded the audience that ‘the way a person dies remains with those left behind’.
Dr Joan Rapaport is Visiting Research Fellow at the Social Care Workforce Research Unit in the Policy Institute at King’s.