Palliative Care for Non-Cancer Patients

, by Addington-Hall, Julia M.; Higginson, Irene J.

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ISBN: 9780192629609 | 0192629603
Cover: Hardcover
Copyright: 6/21/2001

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The specialty of palliative care has traditionally grown out of oncology and there has been little research into the needs of patients dying from causes other than cancer. Few non-cancer patients receive hospice in-patient, home care or day care although a good proportion of hospices say that their services are available to non-cancer patients. As a result, the importance of palliative care for non-cancer patients is now being increasingly recognized internationally, and in the UK a committee reporting to the Department of Health recommended that palliative care should be accessible to all patients who need such care. Palliative Care of the Non-cancer Patient considers the needs and experiences of patients dying from, for instance, stroke, heart disease or dementia by drawing on a range of disciplines and specialties in medicine. The provision of palliative care for patients dying from causes other than cancer raises a number of important questions for policy makers and purchasers. This book summarises what is known about the needs of and appropriate service provision for people dying of causes other than cancer and begins to set a research agenda.

Foreword

Dame Cicely Saunders

List of contributors

xxii

Abbreviations

xxiv

Introduction

(1)

Julia Addington-Hall

Irene Higginson

Twentieth-century medicine

(1)

The development of hospice care

(2)

Palliative care in the UK

(1)

Definitions of palliative care

(1)

Palliative care for non-cancer patients

(3)

References

(2)

Stroke

(9)

Angie Rogers

Introduction

(1)

The extent of the problem

(1)

What are the problems likely to be?

(4)

Communication

(1)

Feeding

(1)

Incontinence

(1)

Pain

(2)

Depression and anxiety

(1)

Informal carers

(1)

Care in the last days of life

(1)

Future research

(1)

Natural history of stroke leading to death

(1)

Feeding

(1)

Symptom management

(1)

Communication in decision-making

(1)

Carers and bereavement

(1)

References

(3)

Respiratory disease

(10)

Charles Shee

Introduction

(1)

Patients likely to benefit from palliative care

(1)

Chronic obstructive pulmonary disease

(1)

Cystic fibrosis

(1)

Other diseases

(1)

Numbers of patients likely to benefit

(1)

Problems associated with severe respiratory disease

(1)

Effectiveness of interventions

(3)

Long-term oxygen therapy

(1)

Bronchodilators

(1)

Corticosteroids

(1)

Other drugs to reduce breathlessness

(1)

Terminal breathlessness

(1)

Ventilatory support

(1)

Surgery

(1)

Pulmonary rehabilitation

(1)

Priorities for further research

(1)

Smoking cessation

(1)

Drug therapies to slow progression of COPD

(1)

Therapies for breathlessness

(1)

Models of service provision

(1)

Implications for clinical management

(1)

References

(3)

Heart disease

(14)

J. Simon

R. Gibbs

Introduction

(1)

Which patients are likely to benefit from palliative care?

(1)

Chronic heart failure

(1)

Pulmonary hypertension

(1)

Intractable angina

(1)

Congenital heart disease

(1)

How many patients are likely to be affected?

(1)

Heart failure

(1)

Intractable angina

(1)

What problems do they have?

(3)

Heart failure

(1)

Symptoms

(2)

Dying from heart failure

(1)

Angina

(1)

`Regional study of care for the dying'

(1)

Summary of research on effectiveness of interventions/services

(2)

Heart failure

(2)

Intractable angina

(1)

Priorities for further research

(1)

Heart failure

(1)

Intractable angina

(1)

Implications for clinical management

(1)

References

(7)

Neurodegenerative disease

(12)

Tony O'Brien

Introduction

(1)

Specific disease states

(3)

Multiple sclerosis

(1)

Motor neurone disease/amyotrophic lateral sclerosis

(2)

Parkinson's disease

(1)

Huntington's disease

(1)

Communicating the diagnosis

(1)

Symptom control

(1)

Pain

(2)

Dysphagia/nutritional problems

(1)

Salivary dribbling

(1)

Breathlessness/respiratory problems

(1)

Dysarthria/anarthria/communication difficulties

(1)

Bladder dysfunction

(1)

Depression/anxiety

(1)

Teamwork

(1)

Summary

(1)

References

(3)

Children and young adults

(10)

Ann Goldman

Ildiko Schuller

Introduction

(1)

Which children need palliative care

(2)

How many children are likely to be affected

(1)

What problems do they have

(4)

Assessment of symptoms

(1)

Some common problems

(1)

Symptom management

(1)

Psychosocial problems

(1)

Practical problems

(1)

Spiritual support

(1)

Services

(1)

Effectiveness of interventions

(1)

Priorities for further research

(1)

Implications for clinical management

(1)

Summary

(1)

References

(2)

The management of chronic pain in palliative non-cancer patients

(16)

Eduardo Bruera

Catherine M. Neumann

Introduction

(1)

Assessment

(3)

The production of pain

(1)

Multidimensional pain assessment

(1)

Tools for multidimensional assessment

(1)

Management

(3)

Pharmacological interventions

(1)

Non-opioid analgesics

(1)

Opioids

(1)

Adjuvant drugs

(1)

Non-pharmacological interventions

(1)

Pain in palliative non-cancer patients

(2)

AIDS

(1)

Treatment considerations

(1)

Neurological diseases

(3)

Multiple sclerosis

(1)

Amyotrophic lateral sclerosis

(1)

Dementia

(1)

Sickle cell disease

(1)

Future research

(1)

Conclusions

(1)

References

(4)

Palliative care in liver disease

(21)

M.A. Heneghan

J.G. O'Grady

Introduction

(1)

Epidemiology

(1)

Principal syndromes and symptoms: their pathogenesis and management

(1)

Ascites and oedema in cirrhosis

(6)

Symptoms

(1)

Treatment

(1)

Fluid restriction

(1)

Sodium restriction

(1)

Diuretic therapy

(1)

Therapeutic paracentesis

(1)

Refractory ascites

(1)

Shunts

(1)

TIPS

(1)

Spontaneous bacterial peritonitis

(1)

Summary

(1)

Hepatorenal syndrome

(2)

Hepatic encephalopathy

(3)

Treatment of encephalopathy

(1)

Treatment aimed at reducing the intestinal absorption of neurotoxins

(1)

Treatment based on elimination of nitrogenous waste

(1)

Jaundice and pruritus

(3)

Treatment of jaundice and pruritis

(1)

Strategies

(1)

Bleeding as a terminal event

(1)

Depression and chronic liver disease

(1)

Quality of life issues and chronic liver disease

(1)

Conclusions

(1)

References

(6)

Renal palliative care

103

(11)

Lewis M. Cohen

Gary S. Reiter

David M. Poppel

Michael J. Germain

Introduction

103

(1)

Why renal palliative care?

103

(1)

Who is affected?

104

(1)

What are the problems?

105

(1)

What are the treatment considerations?

105

(4)

Dialysis discontinuation

109

(1)

Priorities for further research

110

(1)

Implications for clinical management

111

(1)

Acknowledgements

111

(1)

References

112

(2)

Palliative care for patients with dementia

114

(12)

Patricia Hanrahan

Daniel J. Luchins

Kathleen Murphy

Introduction

114

(1)

Extent of the need for palliative care

114

(1)

Epidemiology

114

(1)

Problems in patients with severe dementia

114

(2)

Impairment due to dementia

115

(1)

Common medical complications

115

(1)

Behavioural problems

115

(1)

Caring for the caregivers

116

(1)

Appropriate health care for end-stage dementia patients

116

(5)

Palliative care?

116

(1)

Feasibility of providing palliative care and hospice services

117

(1)

Access to hospice care

118

(1)

Criteria for enrolling patients with dementia in hospice

118

(1)

Predictors of survival time

119

(1)

Elements of palliative care and survival

119

(2)

Priorities for future research

121

(1)

Appendix 9.1

122

(1)

References

123

(3)

Sickle cell disease

126

(11)

Polly Edmonds

Introduction

126

(1)

Pathophysiology

126

(1)

Which patients might benefit from palliative care in SCD?

127

(1)

Clinical complications of SCD

127

(1)

Management of clinical complications of SCD

128

(1)

Infection

128

(1)

Acute chest syndrome

128

(1)

Cerebrovascular disease and stroke

128

(1)

Avascular necrosis of the hip

129

(1)

Management of painful crises

129

(1)

Psychosocial implications of pain in SCD

129

(1)

Non-pharmacological management

129

(1)

Non-opioid and weak opioid analgesia

129

(1)

Strong opioid analgesics: factors limiting use

130

(1)

Parenteral strong opioid analgesics in pain crisis

130

(1)

Oral strong opioids in pain crisis

131

(1)

Therapeutic advances in the management of SCD

132

(1)

Transfusion

132

(1)

Chemotherapy

132

(1)

Stem cell transplantation

132

(1)

Palliative care services in SCD

132

(1)

Conclusions

133

(1)

References

134

(3)

HIV/AIDS

137

(10)

Gabi Brogan

Rob George

Introduction

137

(1)

Changes in HIV/AIDS

137

(2)

Epidemiology

137

(1)

Therapeutics

138

(1)

Palliative care in HIV/AIDS: a continuing need

139

(3)

Symptom control

139

(1)

Late presenters

140

(1)

Long-term survivors

141

(1)

Neurodegeneration

141

(1)

Malignancy

141

(1)

Hepatitis C

141

(1)

Long-term antiretroviral treatment

141

(1)

Lessons from managing HIV/AIDS

142

(1)

Handling uncertainty

142

(1)

The future

143

(1)

The impact of uncertainty on resources

143

(1)

The impact of uncertainty on palliative care services

143

(1)

Conclusions

144

(1)

References

145

(2)

Palliative care in nursing homes

147

(11)

Ian Maddocks

Deborah Parker

Introduction

147

(1)

New roles for nursing homes

147

(1)

Important differences between nursing homes and hospices

148

(1)

The contribution by nursing homes to palliative care delivery

148

(2)

Client comparisons

149

(1)

Nursing home residents requiring palliative care

150

(1)

Provision of palliative care in the nursing home setting

151

(3)

Understanding of palliative care

151

(1)

Medical management in the nursing home

151

(1)

Time to provide care for patients and for relatives

152

(1)

What is necessary for the satisfactory delivery of palliative care?

152

(1)

Counselling and attachment issues for staff

152

(1)

Advance directives and `good palliative care' orders

153

(1)

Education

153

(1)

Bereavement care

153

(1)

New models of care

154

(1)

Conclusion

155

(1)

References

156

(2)

Palliative care in the hospital setting for patients with non-malignant disease

158

(14)

Peter Pitcher

Carol Davis

Introduction

158

(1)

Historical context

158

(1)

Deficiencies in the care of the dying in acute hospitals

159

(1)

Specialist palliative care in hospitals

159

(1)

Which patients with non-malignant disease require specialist palliative care?

160

(1)

Determinants of referrals to hospital palliative care team

160

(1)

The hospital challenge

161

(3)

Assessing whether patients have specialist palliative care needs

163

(1)

Relationships

164

(1)

Differing viewpoints

164

(1)

Advising and facilitating

164

(1)

Education

164

(1)

When is the right time?

165

(4)

Dying or not?

165

(1)

Diagnosis with a poor, but not definitely fatal prognosis

166

(1)

Acute care in the terminal phase

166

(1)

Are doctors reluctant to recognise patients as terminally ill?

167

(2)

Patients with cancer and non-malignant disease

169

(1)

Conclusion

169

(1)

References

170

(2)

Palliative care for non-cancer patients: a UK perspective from primary care

172

(17)

Stephen Barclay

Introduction

172

(1)

Care in the community in the UK

173

(3)

The primary health care team

173

(1)

GPs

173

(1)

District nurses

174

(1)

Community care

174

(1)

The impact of community care changes on primary care

175

(1)

Palliative care in the community

176

(4)

Why primary care is suited to palliative care

176

(1)

Continuity of care

176

(1)

Family perspective

177

(1)

Multidisciplinary in nature

177

(1)

GPs' knowledge and skills in palliative care

177

(1)

Quality of palliative care in the community

178

(1)

Symptom control

178

(1)

Satisfaction with GP care

178

(1)

Supporting informal carers

179

(1)

District nurse care

179

(1)

Community commissioning of palliative care

180

(4)

The relationship between primary care and palliative care specialists

181

(2)

A primary care perspective on specialist palliative care for patients with non-malignant diseases

183

(1)

References

184

(5)

Specialist palliative care and non-malignant diseases

189

(9)

Robert Dunlop

Introduction

189

(1)

The involvement of specialist palliative care services in the care of patients with non-malignant diseases

190

(4)

Why do specialist palliative care services only have limited involvement with non-cancer patients?

191

(3)

Challenges for specialist palliative care services in the future

194

(1)

Summary

195

(1)

References

196

(2)

Patients' perspectives

198

(12)

Cynthia Benz

Introduction

198

(1)

What is palliative care? Beginning the search

199

(1)

Routes

199

(1)

Expectations and dilemmas

200

(5)

In need of palliative care?

200

(1)

Tailoring care

201

(1)

Fears

202

(1)

Quality of life

203

(1)

Independence versus dependence

204

(1)

Who cares ... and when?

205

(1)

Facing death

206

(1)

In dreams begin responsibilities

207

(2)

References

209

(1)

Reforming care through continuous quality improvement

210

(7)

Joanne Lynn

Introduction

210

(1)

Results of continuous quality improvement in one national collaborative effort

211

(2)

Assessing CQI

213

(1)

How to start in CQI

214

(1)

References

215

(2)

Palliative care for non-cancer patients: a purchaser perspective

217

(10)

John H. James

Introduction

217

(1)

Purchasing of palliative care 1987--1997

217

(1)

Purchasing palliative care for non-cancer patients

218

(1)

What has happened in Kensington & Chelsea and Westminster

218

(2)

Wakefield experience

220

(1)

The implications of a new government in the UK

221

(1)

Palliative care for people with AIDS and HIV

222

(3)

Conclusion

225

(1)

References

225

(2)

Informal carers of dependants with advanced disease

227

(12)

Jonathan Koffman

Penny Shaw

Introduction

227

(1)

Informal caring

228

(3)

Informal caring: what does it involve?

228

(1)

Stresses and rewards experienced by informal carers

229

(2)

Carers' unspoken negative feelings towards dependants

231

(1)

Dependants with advanced disease: the informal carer's experience

231

(2)

Pain

232

(1)

Incontinence

232

(1)

Anorexia

233

(1)

Behaviour problems

233

(1)

Problems with information and communication with health care professionals

233

(1)

What do informal carers need?

234

(1)

How can services respond?

235

(1)

Conclusion

236

(1)

References

236

(3)

Specialist palliative care for non-cancer patients: the ethical arguments

239

(12)

Katherine Wasson

Rob George

Introduction

239

(1)

The question

239

(1)

The clinical aims of specialist palliative care

240

(1)

Ethical issues

241

(2)

General responsibilities and duties in the chronic sick and dying

241

(1)

To protect the patient's best interest

241

(1)

Duty to care

241

(1)

To do no harm

242

(1)

Specific responsibilities in caring for dying patients

242

(1)

Issues of justice

243

(3)

Fairness: entitlement and what one deserves

243

(1)

Equality

244

(1)

Equity

244

(2)

The problem of resources: `distributive justice'

246

(1)

Difficulties regarding resource allocation

246

(1)

Financial resource

246

(1)

Alternative approaches to optimise resources

246

(1)

Education resource

247

(1)

A barrier to specialist palliative care for all?

247

(1)

A solution for specialist palliative care for all?

247

(1)

Summary

247

(1)

Further reflections

247

(1)

References

247

(4)

Cultural issues in palliative care for non-cancer patients

251

(10)

Peter W. Speck

Introduction

251

(1)

The experience of illness

252

(1)

Ethnocentricity

252

(1)

Pain

253

(2)

Communication

255

(1)

Delivering cross-cultural care

256

(2)

Training and development for palliative care staff

257

(1)

Managerial issues

257

(1)

Research issues

258

(1)

Conclusion

258

(1)

References

259

(2)

Clinical implications

261

(17)

Irene J. Higginson

Introduction

261

(1)

Assessment and diagnosis

261

(1)

Appropriate treatment and appropriate death

262

(1)

Information and communication

262

(3)

Listening skills

262

(1)

Specific communication in palliative care

263

(1)

Breaking bad news

263

(1)

Therapeutic dialogue

263

(1)

Starting and withdrawing treatments

263

(1)

Dealing with uncertainty

264

(1)

Planning to live and planning to die

264

(1)

Communicating with the family and with other professionals

265

(1)

Management of three common symptoms

265

(4)

Breathlessness

266

(1)

Fatigue and weakness

267

(1)

Pain

268

(1)

Emotional needs

269

(2)

Reaction to change in role

269

(1)

Fear and anxiety

270

(1)

Depression

270

(1)

Social needs

271

(1)

Finances

271

(1)

Home support

271

(1)

Environment

271

(1)

Spiritual and existential needs

272

(1)

Dignity

272

(1)

Family and carers

272

(1)

Multi-professional care

273

(1)

Audit, education and research

273

(1)

Conclusion

274

(1)

References

274

(4)

Discussion

278

(1)

Julia Addington-Hall

Irene Higginson

The ageing society

279

(1)

Implications for health care costs

280

(1)

What does it mean for palliative care---is it ageist?

280

(2)

What is palliative care?

282

(1)

Pain and symptom control, to enable patients to live until death

282

(1)

Death and dying

283

(1)

A continued role for specialist services?

284

(1)

Priorities for research

284

(1)

Conclusion

285

(1)

References

285

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Palliative Care for Non-Cancer Patients

Summary

Author Biography

Table of Contents

Supplemental Materials