Symptom control at the end of life

Dr Iain LawrieSpecialist Registrar in

Palliative Medicine

Objectives

Care of the dying: Why is it important? Palliative Care

What is palliative care?The principles of palliative careWho provides palliative care?

The last 24 hours: What is a ‘good death’?

How can we achieve a ‘good death’?

Care of the Dying: Why is it important?

Death affects us all A ‘good death’ is a fundamental

human right Hospices established in response to

the poor quality of care of the dying patient

‘Bad deaths’ are highly publicised National policies/guidelines

Care of the dying: Why does it concern doctors?

‘When both the consultant and senior nurse in a ward team showed caring characteristics the dying patient had more contact time and more attention from qualified nurses and received an acceptable standard of care.

Teams in which the consultant (and senior nurse) withdrew from the patient had a corresponding deficit in patient care.’ Mills 1994

What is Palliative Care?

Palliative Care is…

“…an approach that improves the quality of life for patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identified and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual.’’

WHO 2002

Who provides Palliative Care?

‘It is the right of every person with a life threatening illness to receive appropriate palliative care wherever they are’

‘It is the responsibility of every health care professional to practise the palliative care approach, and to call in specialist palliative care colleagues if the need arises…whatever the illness…’

National Council for Hospice and Specialist Palliative Care 2002

When should I refer to the Palliative Care Team?

Advanced, progressive disease

Uncontrolled/complicated symptoms

Uncontrolled anxiety or depression

Complex emotional needs involving children, family or carers

Complex issues relating to physical and human environment (i.e. home, finances etc)

Unresolved issues around self worth, loss of meaning and hope (may include euthanasia issues)

Specialist Palliative Care Services

The last 24 hours

What are we aiming to achieve in the last 24 hours?

…a ‘good death’

What is a ‘good death’?

Factors considered important at the end of life JAMA 2000; 284(19): 2476-82

symptom management preparation for death achieving a sense of completion decisions about treatment preferences being treated as a ‘whole person’ being mentally aware rated strongly by

patients (92%)

Factors considered important at the end of life

choice and control over where death occurs (at home or elsewhere)

control over who is present and who shares the end

to be able to leave when it is time to go, and not to have life prolonged pointlessly

A ‘good death’ is…

appropriate for the individual patient

their good death, not ours!

“…we will do all we can not only to help you die peacefully, but to live until you die.”

Dame Cicely Saunders

The Challenge

To provide end of life care tailored to the individual, for patients in the NHS, whilst fostering autonomy, independence and control.

How can we achieve a ‘good death’?

Good communication is central to good end of life carePatients Family and friends Other professionals

How can we achieve a ‘good death’?

Recognize that death is approaching Continue multi-professional approach Reassess patient and relatives’ needs Symptom management Ongoing psychosocial and spiritual support Involve patient, family & friends in decision-

making Care in different settings Ethical questions include CPR/DNAR, futility,

withholding and withdrawing treatment, etc

Diagnosing dying

In patients dying of cancer:

The patient: becomes bed-bound is semi-comatose is able to take only sips of water is no longer able to take oral drugs

Symptom management

The aim of all treatment is to control the symptoms which are distressing the patient

Discontinue: all other medication, investigations and

observations which do not fulfill this aim, and explain rationale to patient/ family

Withdrawing &withholding treatment

investigations

food

fluids

NG tubes / IV lines

medications

communication

ethical considerations

To stop … or not to stop?

antibiotics

analgesics

PPIs

steroids

antihypertensives

statins

aspirin

antidepressants

anticancer treatment

laxatives

Symptoms present in last days of life

Asthenia (debility)AnorexiaDry mouthDyspnoeaConfusionNoisy respiratory tract

secretionsPainRestlessness / agitationNausea

82%80%70%17 - 47%56%46%46%43%14%

Pain

50% develop a new pain: loss of pain control due to route of

administration urinary retention/constipation musculoskeletal bedsores oral candidiasis pathological fracture

Agitation / restlessness

Exclude physical causes before diagnosing terminal agitation/ anguish?Urinary retention/constipationDiamorphine only effective for agitation

due to opioid-sensitive pain : may exacerbate agitation due to other causes

Consider sedatives, restful music of patient’s choice

Explanation

Retained oropharyngeal secretions

‘Death rattle’ Patient usually oblivious Distressing to family, friends & staff Management:

Early interventionPositioningSuctionSubcutaneous antimuscarininc drugs:

hyoscine hydrobromide; hyoscine butylbromide, glycopyrronium bromide

Dry mouth

Dry mouth leads to speech and swallowing difficulties, and halitosis

Contributory causes include drugs, mouth breathing, candidiasis, dehydration

Meticulous mouth care the main stay of treatment

Offer sips of cold drinks Treat candidiasis if feasible Parenteral fluids rarely required

Anticipating problems

Ensure adequate prn medication via appropriate route(s) for:

painagitation and anxiety convulsionsoropharyngeal secretionsnausea

Practical issues

environment

visitors

relatives staying

food & fluids; toilets & showers

after death

Key Messages

Whilst affirming life, regard death as a natural process not a medical failure

Senior doctors’ attitudes to dying patients influences unit’s approach to terminal care

Actively diagnose dying A ‘good death’ will vary for each patient Good communication is essential Attention to detail can make all the

difference

Key Messages

Palliative Care existsbut / and …

All doctors can use the palliative care approach

We die as we have lived …quality of care in the last days and

hours of life is largely dependent upon the preceding care received

Resources

British National Formulary (palliative care section)

Yorkshire Cancer Network Symptom Management guidelines: www.yorkshire-cancer-net.org.uk

Care of the Dying; the last hours or days of life. BMJ 2003;326:30-34

Is there such a thing as a good death? Palliative Medicine 2004;18:404-408

Liverpool Integrated Care Pathway for the Dying Historical and cultural variants on the good

death. BMJ 2003;327:218-220 Caring for people of different faiths. 3rd edition.

Julia Neuberger, Radcliffe 2004