Caring for the Dying at Home

Companions on the Journey

Keri Thomas

• Publisher: CRC Press
• Year: 2020
• ISBN:
  9781315344331
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

This comprehensive resource book, the key text for the Gold Standards Framework (GSF) Programme, supports and enables all primary health professionals, and all those involved in palliative care, to make improvements in care provided for their patients, as recommended in the NICE guidance on Supportive and Palliative Care. It aims to strengthen the role, confidence, systems and skills of primary healthcare teams for the delivery of palliative care and patient support. The GSF, recommended and promoted by the NHS End of Life Initiative, Modernisation Agency and Macmillan, is already used by over 1000 teams in the UK, and is now being offered to every primary care team to improve end-of-life care for all.

PART I

Palliative care at home: why is it important?

CHAPTER 1

Introduction: companions on the journey

This chapter emphasises the importance of improving community palliative care and offers a framework to begin to do so. It includes:

1 Maps and journeys

2 Making changes: resolving the practice–theory gap

3 A matter of life and death: the inner and outer journeys

4 The head, hands and heart of community palliative care

5 A practical model of good practice

6 Seeking wisdom: learning from the dying.

Maps and journeys

In various ways, we’re all involved in journeys. Over recent years, in common with many, my work has required me to travel across the country, in my case as Macmillan GP Advisor in Cancer and Palliative Care, to discuss ways of improving palliative care in the community. When setting off, for example for Leicester from my home in Shrewsbury, West Midlands, I first have to be clear about my destination – a clear goal. With train journeys it is important to know the final destination of a train to ensure you catch the right train to your station. With that in mind, I have to plan a means and a route. I could meander by car across country and make my way slowly to Leicester, and I would no doubt arrive eventually, but it would take me all day and I might give up in the process! However, if I consult a map, take a tried and tested route that other travellers have followed and use signposts to guide me, then my chances of arriving at my destination in time are greater.

I can gauge my progress by the road signs or stations passed. If I come across a hold up, I may take a temporary detour, adapting to new directions, and by chance discover a more delightful short-cut previously known only to seasoned travellers. Or, as happened recently, I may suddenly come upon a stunning field full of poppies, a celebration of diversity, that takes my breath away, lifts my spirits and sets me back on track in a deeper sense. In being lost, I became found anew. If several of us travel together and pool our collective experiences, then we may develop an even better route to the destination and have some fun in the process. So in work, as in life.

In aiming for a goal, such as the best quality of care for the dying, there are many routes, many detours and barriers, many signposts. Therefore a recommended route from a fellow traveller, or even a map, is a helpful start to our journey. Briefly ‘helicoptering’ ourselves out of the immediate situation provides us with the means of examining where we are, where we have come from and where we are heading, allowing us to renew a clear sense of direction and perspective.

The Gold Standards Framework is such a map, tried and tested to help practices take the first steps in developing improvements in community palliative care.

The GSF is an important and valuable ‘map’, especially in the present climate of increasing time constraints and increasing demands on current general practice. In the long run, it will make our job easier.

GP Facilitator, Halton, GSF Phase 2

Making changes: resolving the practice–theory gap

In many areas of life there is a practice–theory gap – a space between where we are and where we want to be. We may know what to do but somehow we just don’t get around to doing it. Why not? There are many varied reasons for this, but one is the difficulty moving from first base, taking the first steps towards the goal. Don Berwick from the Institute of Healthcare Improvement, USA, which has supported and inspired the NHS Modernisation Agency’s work in the UK, says that to implement real change within a system we need to have:

1 Aims

2 Optimism

3 Measures

4 Creativity, ideas, curiosity about other ways of doing things

5 Group behaviour – a collective synergy of ideas.¹

Aims

We need to be clear about our aims or intended destination - our vision - and take time to crystallise these thoughts. In this case, we are attempting to improve generalist palliative care in the community, delivered by our primary healthcare teams. More specifically, we are trying to improve:

1 the care of patients, so that they are enabled to live well until they die, to have a ‘good death’ in their preferred place of choice, symptom-free, safe and secure, with fewer crises

2 carer support, so that they feel supported, involved, empowered and satisfied

3 staff confidence, teamwork, satisfaction, communication and co-working with specialists.

Optimism

It’s good to be optimistic that we can make a difference and encourage constructive thought. How hard it is to build a house of cards and how easy to knock one down. When cynicism creeps in (a feature that seems to come with the stethoscope in medicine), we might reflect whether we alone could do any better?

The journalist, Libby Purves, commenting on a recent MORI report which suggested that the middle-aged are the new, whinging ‘Meldrew’ generation of cynical disparagers, affirms that: ‘The history of humanity tells us that great reforms are made and great civilisations built out of optimism and energy and the willingness of individuals to work together without much immediate personal gratification, for a good purpose. Psychology … tells us that the secret of happiness is making the best of what you have, and believing that you are contributing to something good.’² Refuse to allow others to drain your enthusiasm and optimism for constructive change, tempered by a degree of realism, and keep perspective. For every force for change there is always an opposite resistance.

In the current climate of ‘change fatigue’ and dispirited exhaustion in some, we need to retain a positive approach and affirm our ability to change things for the better. Is the status quo alright? Are we going to be part of the problem or part of the solution? Many resist change, sometimes indignant and resentful that change is with us always, sometimes quite justifiably as not every change is for the better: ‘Every improvement is a change, but not every change is an improvement.’³ Sometimes it is an unwillingness to adapt to a new way of working (‘we’ve always done it this way’), and sometimes it may be because the current system appears to be working well enough, to them. But is it the best for all our patients all the time, and can we raise the quality of our service so best practice becomes routine care? Can we be sure of always delivering the kind of care for all patients that we would wish for ourselves?

Measures

We need to build in measures so we can demonstrate to ourselves and to others how far we’ve progressed from our starting point, and we can perhaps use our findings to call for better services from those who hold the purse strings. We can measure recurring problems in community palliative care, such as lack of carer support or district nursing, or problems accessing drugs and equipment out of hours, etc. We can then assess how often these factors cause crisis admissions to hospitals or prevent patients dying in their preferred place of choice, which enables us to develop better service provision for our patients. The measures are there to develop improved services, not to make us feel bad: ‘measuring for improvement not for judgement.’⁴

We can measure structure matters such as numbers on the register, process matters such as how often we send a handover form to the out-of-hours service and outcome matters such as levels of satisfaction and numbers dying in their preferred place of choice. The focus is very pragmatically on the patient in front of us, and how we can improve the provision of care for them and for those who come after them (see Box 1.1 and www.radcliffe-oxford.com/caring).

Box 1.1 Suggested categories for measurement

1 Is it acceptable to the practice? (structure)

time spent, workload, numbers using a register, etc.

2 Does it change practice? (process)

are things being done now that were not done before, e.g. PHCT meetings, handover forms to out-of-hours provider, assessment tools, etc.?

3 Does it make a difference to patients and carers? (outcome)

numbers dying in preferred place of choice, reduced crises, numbers of hospital bed days per patient, better symptom control, better information and sense of security, patient, carer and staff needs met and satisfaction improved, etc.

Curiosity and creative thinking

Curiosity about other routes may allow us to discover new directions, applicable for others. Sharing examples of good practice is fruitful; not all solutions are transferable but highlighting the problems we have in common can be constructive. Informed by a wide reading of the literature, brainstorming problems, lateral thinking, spreading real-life solutions across peer groups, modifying and adapting ideas from other areas of care, and taking the risk of trying out possible ideas on a small scale are all ways of creatively addressing change from the bottom up.

Group behaviour

Group behaviour as a team is a wonderful resource, sometimes untapped, to devel...

Table of contents

• Cover
• Title Page
• Copyright Page
• Table of Contents
• Foreword
• Foreword
• Preface
• About this book
• Acknowledgements
• Glossary
• Part 1: Palliative care at home: why is it important?
• Part 2: Present knowledge and words of wisdom: how can we begin?
• Part 3: The Gold Standards Framework – A Handbook for Practices and the GSF Programme
• Further reading
• Appendix
• Index