Palliative Care for Non-Cancer Patients

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

• ISBN13: 9780192629609
• ISBN10: 0192629603
• Format: Hardcover
• Copyright: 2001-06-21
• Publisher: Oxford University Press

Summary

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.

Author Biography

Julia Addington-Hall is Senior Lecturer & Deputy Head in the Department of Palliative Care & Policy and Irene Higginson is Professor of Palliative Care & Policy both at King's College School of Medicine & Dentistry and St Christopher's Hospice, London.

Table of Contents

Foreword	v
Dame Cicely Saunders
List of contributors	xxii
Abbreviations	xxiv
Introduction	1	(1)
Julia Addington-Hall
Irene Higginson
Twentieth-century medicine	2	(1)
The development of hospice care	2	(2)
Palliative care in the UK	4	(1)
Definitions of palliative care	5	(1)
Palliative care for non-cancer patients	6	(3)
References	9	(2)
Stroke	11	(9)
Angie Rogers
Introduction	11	(1)
The extent of the problem	11	(1)
What are the problems likely to be?	12	(4)
Communication	13	(1)
Feeding	13	(1)
Incontinence	13	(1)
Pain	13	(2)
Depression and anxiety	15	(1)
Informal carers	15	(1)
Care in the last days of life	16	(1)
Future research	16	(1)
Natural history of stroke leading to death	16	(1)
Feeding	16	(1)
Symptom management	16	(1)
Communication in decision-making	16	(1)
Carers and bereavement	17	(1)
References	17	(3)
Respiratory disease	20	(10)
Charles Shee
Introduction	20	(1)
Patients likely to benefit from palliative care	20	(1)
Chronic obstructive pulmonary disease	20	(1)
Cystic fibrosis	20	(1)
Other diseases	21	(1)
Numbers of patients likely to benefit	21	(1)
Problems associated with severe respiratory disease	21	(1)
Effectiveness of interventions	22	(3)
Long-term oxygen therapy	22	(1)
Bronchodilators	23	(1)
Corticosteroids	23	(1)
Other drugs to reduce breathlessness	23	(1)
Terminal breathlessness	24	(1)
Ventilatory support	24	(1)
Surgery	24	(1)
Pulmonary rehabilitation	24	(1)
Priorities for further research	25	(1)
Smoking cessation	25	(1)
Drug therapies to slow progression of COPD	25	(1)
Therapies for breathlessness	26	(1)
Models of service provision	26	(1)
Implications for clinical management	26	(1)
References	27	(3)
Heart disease	30	(14)
J. Simon
R. Gibbs
Introduction	30	(1)
Which patients are likely to benefit from palliative care?	30	(1)
Chronic heart failure	30	(1)
Pulmonary hypertension	30	(1)
Intractable angina	30	(1)
Congenital heart disease	31	(1)
How many patients are likely to be affected?	31	(1)
Heart failure	31	(1)
Intractable angina	31	(1)
What problems do they have?	31	(3)
Heart failure	31	(1)
Symptoms	31	(2)
Dying from heart failure	33	(1)
Angina	33	(1)
`Regional study of care for the dying'	34	(1)
Summary of research on effectiveness of interventions/services	34	(2)
Heart failure	34	(2)
Intractable angina	36	(1)
Priorities for further research	36	(1)
Heart failure	36	(1)
Intractable angina	37	(1)
Implications for clinical management	37	(1)
References	37	(7)
Neurodegenerative disease	44	(12)
Tony O'Brien
Introduction	44	(1)
Specific disease states	45	(3)
Multiple sclerosis	45	(1)
Motor neurone disease/amyotrophic lateral sclerosis	45	(2)
Parkinson's disease	47	(1)
Huntington's disease	47	(1)
Communicating the diagnosis	48	(1)
Symptom control	49	(1)
Pain	49	(2)
Dysphagia/nutritional problems	50	(1)
Salivary dribbling	51	(1)
Breathlessness/respiratory problems	51	(1)
Dysarthria/anarthria/communication difficulties	52	(1)
Bladder dysfunction	52	(1)
Depression/anxiety	53	(1)
Teamwork	53	(1)
Summary	53	(1)
References	53	(3)
Children and young adults	56	(10)
Ann Goldman
Ildiko Schuller
Introduction	56	(1)
Which children need palliative care	56	(2)
How many children are likely to be affected	58	(1)
What problems do they have	58	(4)
Assessment of symptoms	59	(1)
Some common problems	59	(1)
Symptom management	60	(1)
Psychosocial problems	60	(1)
Practical problems	61	(1)
Spiritual support	62	(1)
Services	62	(1)
Effectiveness of interventions	63	(1)
Priorities for further research	63	(1)
Implications for clinical management	64	(1)
Summary	64	(1)
References	64	(2)
The management of chronic pain in palliative non-cancer patients	66	(16)
Eduardo Bruera
Catherine M. Neumann
Introduction	66	(1)
Assessment	66	(3)
The production of pain	67	(1)
Multidimensional pain assessment	68	(1)
Tools for multidimensional assessment	68	(1)
Management	69	(3)
Pharmacological interventions	69	(1)
Non-opioid analgesics	69	(1)
Opioids	70	(1)
Adjuvant drugs	71	(1)
Non-pharmacological interventions	72	(1)
Pain in palliative non-cancer patients	72	(2)
AIDS	73	(1)
Treatment considerations	73	(1)
Neurological diseases	74	(3)
Multiple sclerosis	74	(1)
Amyotrophic lateral sclerosis	75	(1)
Dementia	75	(1)
Sickle cell disease	76	(1)
Future research	77	(1)
Conclusions	78	(1)
References	78	(4)
Palliative care in liver disease	82	(21)
M.A. Heneghan
J.G. O'Grady
Introduction	82	(1)
Epidemiology	82	(1)
Principal syndromes and symptoms: their pathogenesis and management	83	(1)
Ascites and oedema in cirrhosis	83	(6)
Symptoms	84	(1)
Treatment	84	(1)
Fluid restriction	84	(1)
Sodium restriction	85	(1)
Diuretic therapy	85	(1)
Therapeutic paracentesis	85	(1)
Refractory ascites	86	(1)
Shunts	86	(1)
TIPS	86	(1)
Spontaneous bacterial peritonitis	87	(1)
Summary	87	(1)
Hepatorenal syndrome	87	(2)
Hepatic encephalopathy	89	(3)
Treatment of encephalopathy	91	(1)
Treatment aimed at reducing the intestinal absorption of neurotoxins	91	(1)
Treatment based on elimination of nitrogenous waste	91	(1)
Jaundice and pruritus	92	(3)
Treatment of jaundice and pruritis	94	(1)
Strategies	95	(1)
Bleeding as a terminal event	95	(1)
Depression and chronic liver disease	96	(1)
Quality of life issues and chronic liver disease	96	(1)
Conclusions	97	(1)
References	97	(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