Communication in Palliative Care

Clear Practical Advice, Based on a Series of Real Case Studies

Janet Dunphy

• Publisher: CRC Press
• Year: 2020
• ISBN:
  9780429533280
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Janet's skill in this book lies in her ability to combine theory with narrative and natural science with humanity to create a text that resonates deeply.bringing to light the message that intellectual knowledge is nothing if not accompanied by sensitive delivery and humanity. Mary Kiely in the Foreword This practical thought-provoking guide provides the unemotional clear and accurate advice necessary for communicating with patients in a palliative care setting. Completely up to date this book includes new initiatives born of the End of Life Care Strategy (2008) and details the ethics of key issues in palliative care. Crucially it considers the fine art of communication - the pivotal aspect of being a palliative care expert that is so difficult to quantify and teach. It uses genuine anecdotes and case studies to bring theory to life and assist in everyday application. Communication in Palliative Care is a wide-ranging invaluable resource for palliative care professionals across all clinical settings.

CHAPTER 1

Introduction: a note from the author

As an older nurse (I am 51 years old, by the way), I spend a lot of time talking, teaching and sharing my experience and like so many nurses, I can tell a good story.

THE EDUCATIONAL VALUE OF TELLING THE STORY

The above sentence is revealing: my age, profession and one of my passions: education. This introduction is just for that reason: to allow you as the reader to get to know me a bit, and understand why I wrote this book. It is my chance to talk to you about my experience, style, and why I think those stories are more important than ever. Perhaps, under the pressures of academic work and essay writing, we have lost the knack of sharing them. We all have those stories inside us and sharing them is a valuable educational tool.

EVERYTHING CHANGES

We have all seen the pressures change in healthcare. Change is a certainty. Everything changes and healthcare definitely has, massively. It has changed to meet the demands of biological and sociological developments. My assertion is that, in terms of communication, our priority and purpose have not changed. The more complex healthcare becomes, the more important it is to keep to the simple rules. We are each a product of our experiences and 30 years of motherhood and nursing have inevitably shaped the way I think.

I have been fortunate; I knew as a child that I wanted to be a nurse and as a student nurse that I wanted to work with dying patients. Those were my thoughts back then. Palliative care as a specialty had not been born, but I had a strong sense of where I belonged and I have kept it simple.

CASE STUDIES AND CONVERSATIONS

My aim is to do the same with my writing, to explore key contemporary issues, to describe the necessary skills, and to use thought-provoking case studies from genuine experiences. For the sake of integrity, and with respect to the reader, the context stays within my experience as a nurse in the United Kingdom (UK) and acknowledges that not all issues are covered in depth. I know how hard all healthcare professionals work and how many are involved on a daily basis in providing good palliative care. It is my intention that you all feel that my work here relates to and is useful to you, whatever your job and wherever you do it. There are better paid and less stressful jobs, but making the difference to palliative care patients has to be one of the most rewarding. It would be difficult to sustain if it wasn’t: it would cost too much emotionally. Effective communication is just one aspect of this worthwhile job.

TWENTY-THREE YEARS’ EXPERIENCE

I first worked in a UK hospice in the 1980s and started the studies that all nurses engage in and endure. I realised how much I did not know and studied harder before progressing to be a Macmillan nurse in palliative care, working from a hospital oncology unit and also covering community. By then I had also learnt that I loved teaching and that nurses study forever, in some form. Colleagues would tell you that I am a natural teacher, but I have never forgotten the basics, the reason why we do our job and why we study and share our experience: the patient and their carers. Of course, I know the academic terms and clichés, but I know also that the case studies and genuine clinical anecdotes will be as helpful to the reader.

As my career moved on, I changed my place and clinical area of work, but never my role. I stayed with the patients. I have been a clinical nurse specialist in palliative care for 22 years and have worked in and out of hospices, in community with the general practitioners (GPs) and community nurses, in hospitals on the wards with the doctors, nurses and other staff and in nursing/care homes. I know this specialty and I know how to write about it.

WE MUSTN’T LOSE THE KNACK OF LAUGHING

I also believe that compassion is an easy bedfellow with humour – they can be synergistic. Sometimes I worry that as a profession, we have become bogged down and lost the knack of laughing and sharing our stories. We are regularly taught the science of what we do, the models and the theories, and that is crucial. What we are rarely taught and do not acknowledge even to ourselves is the ‘art’ in what we do. There are some things that cannot be taught, some skills that are part of our personality. Those skills, however, can be identified and developed and it is often those skills that take us from being the learner to the confident practitioner. I hope as you read that you can identify with the art I describe, and that you stop to pat yourself on the back as an ordinary person with special attributes who has chosen to journey alongside those who suffer.

The format of this book describes the journey for the patient and his or her carers, and as they often share the same experience, I have not separated their feelings. The content will apply to all professionals in healthcare and I will use the umbrella term of ‘professional’ to respect all disciplines. For simplicity and gender continuity, I will use the pronoun ‘she’ for the professional and ‘he’ for the patient. The words ‘client’ and ‘service user’ are far too annoyingly ‘politically correct’ for me and I will not be using them (or similar trendy clichés).

MANY DIFFERENT SETTINGS

As professionals, we see our patients go through the phases of illness and experience a variety of clinical settings, getting used to many medical terms along the way. The term ‘clinical setting’ applies to the place of care for the patient. This changes from home, care of GP and community nurse, to hospital perhaps as an outpatient, or as an inpatient under the care of clinical teams of doctors and nurses. Care homes and hospices may also be a vital part of the patient’s journey. It is for this reason that I talk of all settings, to acknowledge and support all professionals working in all places of care. Our hospices are undoubtedly centres of excellence but a hospice is not a building, it is a philosophy, which has been successfully transferred to other settings such as the patients’ homes, and on hospital wards where marvellous, high–standard care is often provided. As a specialist nurse, I learnt early on that we are not special, we just specialise, and I have been lucky enough to work alongside so many inspirational professionals.

Whilst the bulk of my clinical experience has been with cancer patients, the patient suffering from non-malignant disease endures identical problems and often has fewer resources allocated to them. My messages here are therefore not cancer specific as excellent communication is needed whatever the clinical diagnosis. As we treat and manage disease more effectively, we must ensure that good communication is not prescribed in subtherapeutic doses, because in palliative care it may be the only prescription available.

As people live longer, the ageing population increases its demands on services. The figures for dementia sufferers rise as people’s life expectancy increases. I have evolved to accept the science of ageing and dying that, as biological machines, we collect chronic diseases as we age and then we die. We do not ‘pass away’, ‘get lost’ or ‘go to sleep’; we die, and dying matters. We do it only once. I have not become blasé or hard; I am just as soft as I was and proud of it too. However, I have got stronger and accepted that I cannot fix everything, that my patients and their families know this, but that I can make an unforgettable difference at the worst of times. With this knowledge, let us be brave and use grown-up words like ‘death’ and ‘dying’.

Whilst the public expect more from us, we know that we can only treat and manage most diseases. Cure applies only to some infections and some cancers. Everything else we manage, such as diabetes, heart disease, arthritis, etc. It is the management of dealing with people and disease that requires both the art and the science.

THREE SCORE YEARS AND TEN

When I recall my student days, I remember the phrase ‘three score years and ten’.Patients and families meant they had enjoyed what was then termed ‘a good innings’. Conversely, today we are more used to hearing sentences start with the phrases, ‘You would think in this day and age…’ or ‘With all the technology today’. These statements are just as frequently applied to patients older than their ‘three score years and ten’. Middle-aged people are now often saying ‘Why my dad?’ not ‘Well, he has had his three score years’. The population is living longer and expecting more. A baby born today in most places in the developed world will have an average life expectancy of 81.5 years in comparison to 1960 when it was 66.8 for men and 73.2 for women.

TODAY’S PATIENT

Information is more accessible than ever. Most of our patients use the internet, read or search for information in some way. The public are hungry for answers and more confident about asking questions of the professionals caring for them.

One per cent of the population will die each year; in the UK this means 600,000. The average UK GP has approximately 25 dying people on their practice list at any one time. Contemporary politics is now supporting us. The UK Department of Health’s End of Life Care Strategy 2008¹ encourages death awareness, advance care planning, early and sensitive discussions and improved services. We must therefore be honest and clear in our dialogue. The increasing number of questions and thirst for knowledge demand this and if we cannot have open discussions using the appropriate words, how can we change from being a death-denying society to a society that cares for and talks to each other as we die? The 21st-century patient is not the compliant soul of yesteryear. Euphemisms and platitudes belong in history. The modern patient negotiates their information needs and demands much more from the professionals caring for them.

Death has been taken from the closet and slapped on the table. People do actually want to talk about it. They want to discuss everything; symptoms, diagnosis, treatment, prognosis, feelings and coping strategies. All problems are lessened or solved by communication, from minor disagreements to international war.

Given the expectations of our society, we need to be skilled and confident to meet them. I think that it is the least we can do.

REFERENCE

1.  Department of Health. End of Life Care Strategy: promoting high quality care for all adults at the end of life. Cm 9840. London: Department of Health; 2008.

CHAPTER 2

Relationships

Who is the most important person in your life?

Everyone would answer the above question differently and when faced with a new patient, professionals have little or no idea of the patient’s or carer’s values and experiences, and everyone is a product of their experiences. It would be extremely valuable to society if the subject of relationships were taught on the school curriculum. Everyone has them and all too often people bring to their later relationships significant gaps in information and skills. Relationships are formative – pivotal issues that shape and define us. Quite simply, they make professionals who they are and, more importantly, they make their patients who they are.

The impact of how relationships past and present affect people cannot be overestimated. The range of normal reactions is wide. People display a huge variety of personal responses. Family dynamics often play an important part in our relationships and will underpin many of our reactions. A close happy family will often react with strong emotions and their sense of loss will be immense. Conversely, where a family member has been estranged or had a difficult relationship with another family member, there will also be a strong reaction. The only safe assumption is that it is not safe to assume anything. With all this in mind, professionals have to evaluate their patients and form a therapeutic relationship, usually at the worst of times for the patient and their carers. They have to communicate effectively with all other professionals involved and be aware of their own ‘personal triggers’ – the situations that they may face that have a personal meaning to them, and therefore may elicit a personal and emotional response.

Remember the question at the start of this chapter. Professionals are often faced with emotive situations and family dynamics very close to their own experience and these form the ‘personal triggers’. Sometimes they are easily identified and planned for, and at other times such triggers appear unexpectedly; they can sneak under the professional’s radar and become an added difficulty and complexity in the patient–professional relationship. Within healthcare, professionals move from task to task, tasks that involve people, where one person’s life touches another’s.

Claire’s story

I am 48 years old and an experienced clinical nurse specialist working in a busy hospital. I love my job and I am still confident after doing it for 20 years. So the referral for an elderly man in the dying phase of his illness was not a particular challenge to me. I knew the care of the elderly ward and its staff well. It did not seem a clinically complex case and, on paper, Eddie seemed to be dying peacefully from his metastatic prostate cancer. I had been asked just to pop in and check that all his care was okay.

I arrived on the ward, enjoyed my usual friendly chat with the staff and walked into Eddie’s side room. Eddie was unconscious, peaceful and obviously well cared for, but that wasn’t the first visual impact. It was the small, elegant meek-mannered lady sat at the back of his room; she sat (both in her body language and chosen position in the room) as though she didn’t want to be in the way. She was perfectly groomed, earrings, clothes, shoes, scarf, and handbag all matching. Her expression was gentle, unassuming, accepting of the pain of loss that lay before her.

I sat with her to hear her story of how much she loved Eddie and had done since they were 20 years old. They had done everything together, no separate interests, an old-fashioned marriage of 58 years that had worked. They had raised family together. Eddie had worked as an engineer and managed all the technical aspects of running a house; the television controller was a mystery to Dora, his wife, who had cooked, cleaned and organised all the housekeeping and bills.

They were a real partnership and loyal friends. He was the love of her life and she was watching him die without anger or frustration. She was philosophical: ‘It happens to us all you know, love,’ she whispered as though she was preparing me, the younger woman who hadn’t been on this earth as long and had much to learn about loving and letting go. She had no concerns or questions; she accepted the scene before her with grace and humility. She was full of praise for the staff and thanked me for my visit: ‘You have a lovely kind face, love,’ she told me and she tapped my hand, as if to say it’s okay now love, all is well here.

I left the room and didn’t stop to talk to the staff as I normally do because I was crying, quietly, huge tears pouring down my face as I walked through the busy ward. To me that could have been my mum and dad. I could imagine them being that way. My mum is so like that lady and I know she too would be the elegant, accepting, meek-mannered lady who sat quietly as her soulmate left her and...

Table of contents

• Cover
• Title Page
• Copyright Page
• Table of Contents
• About the author
• Acknowledgements
• Foreword
• Dedication
• 1 Introduction: a note from the author
• 2 Relationships
• 3 Being a professional
• 4 Assessment skills
• 5 Diagnosis
• 6 Treatment
• 7 The impact of serious illness
• 8 Confirmation of a poor prognosis
• 9 Key ethical issues in communication
• 10 The specifics of advance care planning
• 11 Breaking bad news within palliative care
• 12 The dying phase
• 13 Frequently asked questions
• 14 Looking after you
• 15 Conclusion
• Index