Patient-Centred Ethics and Communication at the End of Life

David Jeffrey

• Publisher: CRC Press
• Year: 2018
• ISBN:
  9781315358253
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This book provides the best information available on the ways priorities are currently set for health care around the world. It describes the methods now used in the six countries leading the process, and contrasts the differences between them. It shows how, except in the UK, frameworks have now been developed to set priorities. Making Choices for Health Care sets forth the key issues that need to be tackled in the years ahead. Descriptions of the leading trends are accompanied by suggestions to resolve outstanding difficulties. Topics include: the need for national research and development funding for new treatments, ways to shift resources permanently towards prevention and chronic care, and how DALYs may replace QALYs. While the concepts and values underlying priority setting have been discussed elsewhere, Making Choices for Health Care highlights real current practice. It is a vital tool for policy-makers, health care managers, clinicians, patient organizations, academics, and executives in pharmaceutical and medical supply industries.

Part 1
Ethics, communication and palliative care

1 What is palliative care?

It seems to me most strange that men should fear;

Seeing that death, a necessary end,

Will come when it will come.

Julius Caesar, II, ii.

Case history

Mary is a 40-year-old teacher who is married to Ben, a computer programmer. They have two children, Joe (aged 15 years) and Anna (aged 12 years). Five years ago Mary developed breast cancer, which was treated by surgery, radiotherapy and chemotherapy. One year ago she had a recurrence of her cancer in her bones and lungs. She had further radiotherapy and chemotherapy. Unfortunately she had severe side-effects from the chemotherapy, including vomiting and fatigue, and was admitted to hospital with anaemia and septicaemia. She declined further chemotherapy and went home to be looked after by her general practitioner (GP) and district nurse.

Some weeks later she developed breathlessness, and her GP asked the specialist palliative care nurse (Macmillan nurse) to visit Mary and give advice regarding her further care.

The specialist nurse visited her together with Mary’s own district nurse. They listened to Mary, who told them of her fears of ‘choking to death’. She was also worried that she might have to return to hospital. The nurses asked whether she would like Ben to be present for the discussion of her future care. Mary agreed that she would, and together they reassured Mary that she would not be left to die in an undignified, frightening way, and that there were drugs available to alleviate her symptoms, including shortness of breath or choking feelings.

They discussed the possibility of care at home, but Ben was worried how he would cope at night if Mary’s condition worsened. The district nurse told them about a Marie Curie nurse who could spend some nights with Mary in order to give Ben a rest. Mary then expressed anxiety about how her children would cope. She was told about a psychologist who was working in the local hospice who would be able to contact her and give support.

Mary deteriorated rapidly over the next two weeks, and was very sleepy. She was visited by her GP daily and had frequent visits from her district nurse and home care nurse. She died peacefully at home with Ben, Joe and Anna present.

Six months later Ben and the children saw the psychologist again for bereavement support.

Palliative care

The above case illustrates some of the characteristics of palliative care at home. The World Health Organization definition of palliative care is as follows:

Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment.¹

Palliative care developed in hospices as a response to perceived inadequacies in the care of dying patients and their families.² The pioneering work of hospices demonstrated that the principles of hospice care could be applied in a variety of settings – in this instance in the patient’s home. Saunders and Sykes introduced the concept of ‘total pain’, which highlighted not only the physical aspects of the patient’s pain, but also psychological, social and spiritual dimensions of the patient’s distress, which can all contribute to their suffering.³ This is well illustrated in the case history, where a symptom such as breathlessness was closely linked with both fear and fatigue. Once Mary’s anxieties had been addressed, care of her symptoms became more straightforward.

Palliative care views dying as a normal process, and neither hastens nor postpones death. The multi-disciplinary team, in this case the primary care team with advice from the Macmillan nurse, provides relief from distressing symptoms by integrating the psychological and social aspects of care. In addition, it offers a support system to help patients to live as actively as possible until their death, and to help the family to cope during the patient’s illness and in their own environment.

In the above definition, ‘total care’ refers to a holistic approach to the care of the patient. It does not mean that specialist palliative care services (in this instance the specialist nurse and psychologist) should take over the total care of the patient. Specialist palliative care services act as a resource for the patient, the family and the primary professional carers, in this case the primary care team. It may not be possible to ‘control’ psychological, social or spiritual problems as the definition seems to suggest, but it is important that these dimensions of care are assessed and addressed.

The scope of palliative care extends beyond the patient with a diagnosis of cancer to include patients with other chronic life-threatening diseases. Douglas challenged the hospice movement when he asked ‘Why should only the minority who die of malignancies – and precious few even of them – be singled out for deluxe dying?’⁴

The view expressed above that palliative care ‘neither hastens nor postpones death’ reflects the philosophy of palliative care which rejects active euthanasia as a means of relieving suffering. Palliative treatments may lengthen survival, but this is not their primary goal, which is to improve quality of life.

Attempts have been made to clarify generic palliative care (or a palliative approach), and to distinguish this from specialist palliative care. A generic palliative care service consists of all the patient’s and family’s usual healthcare professionals who provide palliative care as an integral part of their routine clinical practice.⁵

Specialist palliative care services can be defined in terms of their core service components, their functions and the composition of the multi-professional teams that deliver the service, underpinned by the same set of principles as generic palliative care services. The components of specialist palliative care include the following:

• inpatient care

• day therapy

• bereavement services

• community care

• hospital support

• education and research.

No one individual can meet all the needs of the patient and their family. A multi-professional team delivers specialist palliative care. The specialist palliative care services include NHS and voluntary sector providers, and members of the specialist palliative care team would include the following:

• specialist nursing staff

• consultant in palliative medicine

• clinical psychologist

• social worker

• occupational therapist

• physiotherapist

• chaplain and/or other religious leaders.⁵

Palliative care in different settings

Palliative care is applicable in most settings. In the UK, almost a quarter of occupied hospital bed days are taken up by patients who are in the last year of life, and 60% of all deaths take place in hospital, despite a strong patient preference for dying at home.⁶ Seymour has commented on the social isolation of dying patients in hospital, and on the failure of medical technology to coexist appropriately with dignified dying.⁷ Hospital is often perceived to be a place of insecurity, discomfort, intrusion and demands for compliance.⁸ This can be contrasted with the home, which is a more personal setting where there is generally a sense of social and physical security, and where sick people may have a greater sense of control. The patient’s privacy can be threatened if many different professional carers visit the home in an uncoordinated manner. Patient preferences should be given attention, since it seems that so far as palliative care services are concerned the wishes of patients are at variance with the current policies.⁹ By listening to patients and those close to them, the nature of appropriate care will become clear. Mola has identified the following circumstances which influence care of the dying at home:

• a favourable family environment

• acceptance of death

• a supportive family

• making the patient’s preferences a priority

• availability of voluntary carers.⁸

When should palliative care start?

For cancer patients, palliative care may start at the time of diagnosis, although it is more usual to start such care when cure is no longer possible. There is a trend towards initiating palliative care earlier in the patient’s illness, shifting the focus away from terminal care. This trend is linked to the desire to extend the benefits of palliative care to individuals with diseases other than cancer.² Currently there is confusion about the boundaries of palliative care – a specialty which relates to a stage of disease rather than to pathology – and the relationship between palliative and supportive care remains unclear. The challenge facing palliative care is how to reconcile technical expertise with demands for a humane orientation to care.² Psychosocial aspects of palliative care must be the concern of every member of the team, since all of the elements that contribute to ‘total pain’ require attention if suffering is to be relieved and quality of life improved.¹⁰ Palliative care is not highly technological, but it is highly sophisticated and challenges practitioners on personal, clinical and ethical levels.

Key points

Palliative care:

• is concerned with quality rather than quantity of life

• addresses the needs of patients and their carers

• adopts a holistic approach

• is delivered by a multi-disciplinary team

• includes terminal care of the dying patient

• is delivered in a variety of settings.

References

1 World Health Organization (1990) Cancer Pain Relief and Palliative Care: Report of a WHO Expert Committee. World Health Organization, Geneva.

2 Clark D (2002) Between hope and acceptance: the medicalisation of dying. BMJ. 324: 905–7.

3 Saunders C and Sykes N (eds) (1993) The Management of Terminal Malignant Disease. Edward Arnold, London.

4 Douglas C (1992) For all the saints. BMJ. 304: 579.

5 National Council for Hospice and Specialist Palliative C...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• About the author
• Acknowledgements
• Author’s note
• Introduction
• Part 1 Ethics, communication and palliative care
• Part 2 Death, dying and dilemmas
• Part 3 Good practice
• Conclusion: learning to listen
• Index