endorsed by the all wales palliative care … referral...guidelines for referral to specialist...

All-Wales Referral and Symptoms Guidelines Final May 2010 1

SYMPTOM CONTROL GUIDELINES FOR PATIENTS

WITH END-STAGE HEART FAILURE AND CRITERIA FOR REFERRAL TO SPECIALIST

PALLIATIVE CARE

May 2010

Grŵp Cydlynu Rhwydweithau y Galon

Cardiac Networks Co-ordinating Group

Endorsed by the All Wales Palliative Care Implementation Group


CONTENTS PAGE

1. Introduction 3

2. Policy Context 3

3. Definitions of Palliative Care 4

4. Specialist Palliative Care 4

5. End of Life issues in Heart Failure 5

6. Guidelines for Referral to Specialist Palliative Care 6

7. Symptom Management Guidelines 8

7.1 Breathlessness 9

7.2 Cough 10

7.3 Pain 11

7.4 Nausea and Vomiting 12

7.5 Cachexia and Anorexia 13

7.6 Constipation 14

7.7 Peripheral Oedema 14

7.8 Dry Mouth 15

7.9 Fatigue 16

8. Psychological Issues 16

9. Spiritual Pain 17

10. Withdrawal of Medication & More 18

11. Terminal heart failure- the last few days of life 18

12. Financial advice and support 20

13. References 22

14. Recommended Reading 24

Appendix 1: List of Contributors 25


1. Introduction

These guidelines are aimed at health care professionals caring for patients with end-

stage heart failure and should be used in conjunction with national and local guidelines

(WAG 2009, SIGN 2007, NICE 2003) They outline the role, responsibilities and referral

process between Generic and Specialist Palliative Care for the care of those with end-

stage heart failure. These guidelines include a symptom control guidance section that

focuses on symptoms that are common and troublesome in end-stage heart failure and

should be utilised as a means of informing clinical decision-making and care planning.

These guidelines have been developed through collaboration between Specialist

Palliative Care and the Cardiac Networks of Wales (Appendix 1). Nationally, the use of

referral guidelines has been effective in improving referrals and access of heart failure

services to Specialist Palliative Care (NCPC 2006) therefore the aim of these guidelines is

to positively influence patterns of referral and collaboration throughout Wales.

End-stage heart failure is a disabling condition where individuals experience high levels

of physical, functional and emotional distress; it is often characterised by a slow decline,

punctuated by episodes of rapid deterioration leading to acute hospital admissions

(Ward 2002). For many patients their final months are characterised by distressing and

poorly controlled symptoms (Lynn and Adamson 2003). These guidelines emphasise the

importance of open and honest communication between professionals, patients and

families throughout the treatment of heart failure but particularly during the end-stages

of the illness.

There is a growing acknowledgement that Specialist Palliative Care can play an

important role in improving quality of life for individuals with non-malignant disease and

their carers; there has been much activity to promote and extend the availability of

these services for the individual with advancing non-malignant disease where there is a

limited prognosis. The position statement from the Heart Failure Association of the

European Society of Cardiology (Jaarsma et al 2009) emphasised the need to promote

development of heart failure services across Europe and these guidelines should be read

in conjunction with this.

2. Policy Context

The Cardiac Disease National Service Framework (WAG 2009) for Wales makes

reference in both Standard Four and in the section on Cross-Cutting Interventions to the

palliative care needs of those with cardiac disease including heart failure,

recommending that care pathways for those with heart failure should include access to

supportive and palliative care when this is needed.

The Cardiac NSF is supported by Quality Requirements (CNCG 2009) developed to

support implementation of the NSF. They reflect the scope and content of the Standards

and clarify the standard of service that is expected throughout Wales within two to five

years. The QRs are suitable for use in self-assessment or peer review. The QRs which


support Standard 4 (Managing the care of patients with chronic heart failure) are

directed at Local and Tertiary Heart Failure Teams and should be read in conjunction

with these guidelines.

There is also as a key section in the National Service Framework for Older People (WAG

2006), where it has been made clear that palliative care services must form part of the

spectrum of care for this condition.

3. Definitions of Palliative Care

According to the World Health Organisation (WHO 2002), palliative care can be defined

as:

“…an approach that improves the quality of life of patients and their families facing the

problems associated with life-threatening illness, through the prevention and relief of

suffering by means of early intervention and impeccable assessment and treatment of

pain and other problems, physical, psychosocial and spiritual”

• provides relief from pain and other distressing symptoms

• affirms life and regards dying as a normal process

• intends neither to hasten or postpone death

• integrates the psychological and spiritual aspects of patient care

• offers a support system to help patients live as actively as possible until death

• offers a support system to help the family cope during the patients illness and in

their own bereavement

• uses a team approach to address the needs of patients and their families,

including bereavement counselling, if indicated

• will enhance quality of life, and positively influence the course of illness

• is applicable early in the course of illness, in conjunction with other therapies

that are intended to prolong life, such as chemotherapy or radiation therapy,

and includes those investigations needed to better understand and manage

distressing clinical complications.

4. Specialist Palliative Care

These services are provided by medical consultant-led specialist multidisciplinary teams.

The teams include palliative medicine consultants and palliative care nurse specialists


together with a range of expertise provided by physiotherapists, occupational

therapists, dieticians, pharmacists, social workers, and those able to give spiritual and

psychological support. The type of service offered by the team includes the following:

• Assessment and advice about complex pain and symptoms

• Emotional and psychological support for individuals and their families

• Advice regarding place of care and discharge issues

• Hospice-at-home facilities

• Specialist in-patient facilities for individuals who require ongoing support and

management of complex symptoms

• Advice and support for using ‘end of life’ tools

• Out of Hours palliative medical advice

• Day therapy facilities

• Respite and rehabilitation opportunities

• Complementary therapies

• Bereavement support facilities

• Benefits and social care advice

• Provision of education for professionals

5. End of Life Issues in Heart Failure

End of Life Care helps all those with advanced, progressive, incurable illness to live as

well as possible until they die. It enables the supportive and palliative care needs of

both patient and family to be identified and met throughout the last phase of life and

into bereavement. The disease trajectory of heart failure is different from that of cancer

and most heart failure patients will progress through three phases (Jaarsma et al 2009).

The first phase is one of chronic disease management (NYHA i –iii), the second of

supportive and palliative care (NYHA iii-iv) and the final phase of terminal care (NYHA

1994, Murray et al 2007)

There are a number of factors that are specific to individuals with end-stage heart

failure whose disease is progressing. End of life care should be considered as part of

care pathway planning, and should be appropriate, timely, effective and seamless. In


addition it should reflect that the views and wishes, choices and needs of the individual

are respected and met; it may often include the following issues:

• Difficulties of diagnosing the dying phase

• Multiple difficult symptoms

• Communicating bad news

• Continuation of cardiology treatment regimes

• Transitions from the active to palliative approach to care management

• End of life issues and the continuation of cardiac device therapy (see section

6.12)

• Family and carer’s concerns and their information and support needs

• Access to Specialist Palliative Care

• Respite needs and suitable placements of care, including where possible, the

patients’ preferred location for last days of life

6. Guidelines and Criteria for Referral to Specialist Palliative Care

• Decision about referral to Specialist Palliative Care should be made between the

patient and the Heart Failure Team; this will ensure that all those involved are in

agreement and informed about the management and plan of care

• A referral may be for a one-off consultation or where appropriate for on-going

supportive management and care

• The patient and medical team (Consultant or GP) are aware of and agree to

referral to Specialist Palliative Care


Consideration for referral to specialist palliative care should be considered for

individuals who:

• Know that they have a confirmed diagnosis of heart failure

• Have advanced heart failure (New York Heart Association, Grade 3 or 4* at

the discretion of health care team or cardiology team)

And meet two or more of the following criteria:

1. Anticipated prognosis of 12 months or less

2. Three admissions to hospital within the last 12 months with symptoms of heart

failure

3. Physical or psychological symptoms despite optimal tolerated therapy (+/-

deterioration in renal function)

*New York Heart Association Grade (NYHA, 1994) 3 or 4 – marked dyspnoea on

ordinary or any exertion or symptoms at rest.

Prognostication in advanced Heart Failure is difficult and many indicators are available

but not one is a precise indicator of outcome. The European Society of Cardiology

position paper (Jaarsma et al 2009) suggests that clinical acumen and the development

of factors such as progressive renal dysfunction, cachexia and the need for increasing

diuretic doses provide “sufficient evidence of irreversible and ever declining health

status”

The paper identifies triggers for a palliative care discussion:

• Recurrent episodes of decompensation within six months despite optimal

tolerated therapy

• The occurrence of malignant arrhythmias

• The need for frequent or continual intravenous therapies

• Chronic poor quality of life

• Intractable class iv symptoms

• Signs of cardiac cachexia


7. Symptom management guidelines for end stage heart failure

These guidelines have been based on the most common symptoms associated with End-

Stage Heart Failure. They are not comprehensive and should be utilised in conjunction

with national and local guidelines. These guidelines are based on the Merseyside and

Cheshire Cancer Network Symptom Control Guidelines (MCCN 2005) The Palliative

Medicine Handbook (Back 2004), and Heart Failure and Palliative Care - A Team

Approach (Johnson and Lehman, 2006)

Symptoms and issues covered in these guidelines include the following:

• Breathlessness

• Cough

• Pain

• Nausea and Vomiting

• Cachexia and Anorexia

• Constipation

• Peripheral Oedema

• Dry Mouth

• Fatigue

• Psychological issues

• Spiritual Pain

• Withdrawal of Medication

• Terminal heart failure – the last days of life


7.1 Breathlessness

Possible reversible causes of breathlessness other than heart failure should be

considered e.g. Beta-blockers, infection, anaemia and metabolic changes. Fatigue and

muscle weakness can also contribute to breathlessness; in addition anxiety and

depression require consideration. In view of the potential for multiple contributory

factors both pharmacological and non pharmacological modalities should be considered.

NON-PHARMACOLOGICAL MANAGEMENT

• Simple measures – hand held fans (Schwartzstein et al 1987) and repositioning

• Breathlessness management, including breathing retraining

• Occupational therapy – lifestyle adjustments and fatigue management

• Psychological support – appreciating impact on lifestyle

• Anxiety management and education re; management of panic attack

• Massage, aromatherapy and other relaxation methods

• Spiritual and religious support to provide support, strength and meaning to their

experiences

PHARMACOLOGICAL MANAGEMENT (these are not in order of priority)

• Nebulised 0.9 % saline +/- bronchodilators, e.g. Salbutamol 2.5 mg or

Terbutaline 2.5 mg or Ipratropium bromide 500mcg prn to qds (McCarthy et al

1996). This may be worth a trial for symptomatic improvement even if there is

no measurable change in lung function

• If co-existing angina, ensure availability of GTN Spray as bronchodilators may

precipitate angina in such patients

• Bronchodilators will not be effective if the patient is also taking Beta-blockers

• Where appropriate consider monitoring serum potassium every four weeks

• Sublingual or Oral Lorazepam 0.5 – 1 mg prn to max. 4 mg per day – especially if

there is an element of anxiety. Diazepam 2 mg orally, or Buspirone 5 mg orally

can be considered as second-line agents. There is no evidence to support this

use.


• Patients with significant anxiety should initially be considered for non-

pharmacological measures with the addition of an anxiolytic antidepressant such

as mirtazepine as second line

• Low dose Oramorph – commencing at initial dose of 2.5 mg four hourly,

titrating up every 48 hours as needed and tolerated.

• Morphine is excreted renally so if renal impairment or failure is present – use

lower starting dose and reduce frequency to bd or tds depending on response.

• Consider use of prophylactic laxative and anti-emetic when commencing strong

opioid.

• For patients who develop side effects on morphine, alternative opioids may be

suitable, and advice regarding these can be obtained from the specialist

palliative care team.

• Humidified oxygen – starting at 24% and continuing at this concentration if

there is co-existing COPD. There are no studies evaluating oxygen in

breathlessness in severe heart failure so care is needed not to create an oxygen

dependency which could be an added burden.

• GTN spray, 1-2 puffs prn, contraindicated in severe aortic stenosis

7.2 Cough

Cough may be due to the underlying heart failure, and not due to ACE Inhibitors, so

these should not be automatically discontinued, especially in patients who have been

taking them long-term. However, if an ACE inhibitor has been commenced recently and

cough is also recent in onset, consider it as a possible cause and review.

If related to difficulty expectorating:

• Nebulised saline 0.9% 2.5 mls as required.

• Physiotherapy advice to aid expectoration

For a dry cough

• Nebulised saline 0.9% 2.5mls qds may reduce the irritation of airways dried by

oxygen or by persistent mouth breathing.

• Cough suppressants :

• Codeine linctus 5 – 10 mls PRN to qds


• Low dose Oramorph (starting dose 2.5 mg qds) may also help breathlessness and

pain. Titrate according to response as for pain until an effective dose is reach or

side effects occur. Consider commencing prophylactic laxatives when starting

strong opioids.

For alternative options if the above are not effective, consider referral to the

Specialist Palliative Care Team.

7.3 Pain

A high proportion of heart failure patients experience pain, up to 78% in some studies

(McCarthy et al 1996)

This may include non-specific generalised pain including

musculoskeletal. There is a need to consider psychological, emotional and spiritual

aspects – pain may be affected by patient’s mood and by what the pain signifies to the

patient (e.g. progression of their illness)

The importance of other team members – Physiotherapist, Occupational Therapist,

District Nurse, Specialist Nurses, Social Worker, Psychologist, and Chaplain should be

remembered.

A full assessment of pain is required including site(s) and possible causes etc.

Remember to consider other causes and pathologies in addition to heart failure.

The use of pain assessment tools may be helpful (see recommended reading).

Consideration should be given to the Analgesic Ladder (WHO 2005)

STEP 1:

Non opioids – regular Paracetamol

Mild pain of many causes will respond to Paracetamol

STEP 2:

Weak opioids +/– non-opioids regular Codeine +/- Paracetamol. Therapeutic doses of

weak opioids are required e.g. codeine 30mg in combination with 500mg Paracetamol.

STEP 3:

Commence normal release Morphine Sulphate liquid or tablets on a four-hourly regime

with access to “as required” doses as well.

If opioid naïve start at 2.5mg four hourly but if already taking full dose of Codeine start

at 5mg four hourly and 5mg prn.

• Titrate the dose up as indicated by the total dose required the previous 24 hours

(regular doses and total prn doses)


• Reduce dose frequency and dosage in renal impairment. If renal function is

markedly impaired, contact the Specialist Palliative Care team for advice

regarding alternative opioids

• Paracetamol may still have an additive effect in Step 3 of the analgesic ladder.

• When commencing strong or weak opioids, consider use of prophylactic

laxatives and anti-emetics

• Alternative types of opioids may be necessary for some patients

• Renal function should be monitored to guide doses of opioids in some patients

• Anti-angina medication if angina

Non-steroidal anti-inflammatory agents can worsen heart failure so should be avoided

if possible.

Adjuvant analgesics may be required but tricyclics are relatively contraindicated in

heart failure. An anticonvulsant such as gabapentin may be safer but the side effects

are numerous and regular review is necessary.

7.4 Nausea and vomiting

Patients with advanced heart failure may have multiple causes of nausea and vomiting,

these can include environmental causes such as food or smells. Identifying the possible

underlying cause may help choose the first line anti-emetic.

• Consider drugs that may cause nausea and vomiting. Can these be discontinued

or reduced?

• If nausea is constant and there is renal impairment or renal failure, consider:

• Haloperidol 1.5 – 3 mg orally/sc at night

If the nausea is related to meals or there is early satiety and the vomiting of undigested

food, this may be related to squashed stomach from hepatomegaly, consider:

• Metoclopramide 10mg orally tds or by continuous subcutaneous infusion

30mg, over 24 hours

• Domperidone 10 mg orally tds


• Levomepromazine 6.25mg orally at night may be helpful if an anxiolytic effect

is also required but it maybe sedating. This is often used by s/c injection as a

6.25mg dose or as a 6mg tablet (Levinan) which is available off licence on a

named patient basis and is commonly used

If nausea is related to environmental factors such as smells or sight of food consider,

• Haloperidol 1.5 – 3mg orally/sc at night, increased to bd as necessary

If the patient is nauseated much of the time, vomiting or considered to have gastric

stasis, it may be appropriate to consider administration by alternative routes to oral. A

continuous subcutaneous infusion should ensure adequate systemic absorption.

• Anti-cholinergics such as Cyclizine and Hyoscine Hydrobromide have the

potential for cardiac toxicity and may worsen constipation so are best avoided.

7.5 Cachexia and anorexia

Patients with heart failure may have poor appetite and lose significant amounts of

weight. Dietary advice should be an integral part of heart failure care; the focus of

earlier dietary advice may need to be revised on the basis of reassessment as the

disease progresses.

• Fat-soluble vitamins may be appropriate

• For cachectic patients a high calorie, high protein diet with no added salt may be

beneficial

• Patients may develop low cholesterol levels and in these circumstances Statin

medication should be discontinued.

• Conflict between family and patient may arise in relation to food intake. Open

discussion in relation to expectations at advanced stage of disease may need to

be led by the clinician.

• If the cachexia syndrome of advanced heart failure is identified there is little

current evidence to suggest that increasing dietary intake will be beneficial.


7.6 Constipation

Constipation may be due to environmental factors, such as lack of privacy, which should

be considered and addressed; it may however, be triggered by reduced intake of fluids

and food, diuretics, immobility, weak or strong opioids (NB: consider prophylactic

laxatives when commencing these).

Stool softener:

• Sodium Docusate 100-500 mg daily in divided doses

Stimulant laxative:

• Senna two tablets or 10 mls once or twice daily

Or combination:

• Codanthramer two capsules once or twice daily or 10 mls once or twice daily).

(This is only licensed for use in terminal illness.)

Other options for constipation include Idrolax, rather than Movicol (BNF 2009) as it has

very low sodium content; or combining Senna and Magnesium Hydroxide (this may also

help to relieve co-existing gastric symptoms).

7.7 Peripheral oedema

Longstanding peripheral oedema may result in thin, dry and itchy skin that is prone to

cellulitis. Poor peripheral circulation related to co-existing diabetes mellitus or

peripheral vascular disease will compound the problem. The oedema may include the

arms and genitalia as well as lower limbs.

• Diuretics

• Dry skin – aqueous cream + 2% (Back 2004) menthol may help with itchy dry skin

used liberally two or three times a day. Balneum or Oilatum may be used for

bathing.

• Compression bandaging – input from District Nurse, Lymphoedema nurses,

Tissue Viability nurses or Physiotherapists may be useful.

• Scrotal support for scrotal oedema

• OT assessments – need to adjust expectations of patient and carer

• Social worker – services and support at home


7.8 Dry mouth

Assess for any underlying cause, an examination of the mouth is required for adequate

assessment. Identify if there is co existing soreness.

• A sore dry mouth may due to a multiplicity of factors including oxygen therapy,

medication or underlying oral thrush.

• Consider if any implicated medication could be discontinued?

• Humidify the oxygen (if required)

• Maximise oral hygiene, consider Chlorhexidene (Corsedyl) mouth wash 10mls

twice daily to reduce bacterial count

• Ensure adequate availability of drinks

• Encourage use of chewing gum

• Provide ice cubes to suck

• Prescribe saliva substitutes according to patient preference:

o Saliva Orthana (pork mucin based) spray needs to be used under the tongue

o Salivix pastilles

o Saliva Stimulating Tablets (SST)

o Oral Balance gel

• Avoid acids in artificial saliva, vitamin C or fruit juices in dentate individuals as

they may cause further oral problems.

• Look out for and treat oral candidiasis, usually Nystatin 1ml qds


7.9 Fatigue

This is a common symptom in end stage heart failure and requires a full assessment to

identify potential reversible causes. Diuretics causing hypokalaemia, anaemia, sleep

apnoea and nocturnal hypoventilation and depression may be present either singly or

co-existing.

A full history is essential.

• Sleep history from patient and partner and, if appropriate, referral to sleep

apnoea clinic.

• Investigate anaemia and if normochromic/normocytic consider the relative risks

and benefits of Erythropoietin and intravenous iron.

• Consider referral to physiotherapist for exercise programme if chronic heart

failure is stable.

• Consider referral to occupational therapist for prioritisation and pacing advice to

enable adjustment to their limitations.

8. Psychological issues

It is important to explore underlying psychological issues for patients, families and

carers and deal with these if possible by means of a holistic approach involving all

members of the multidisciplinary team as appropriate. It may be helpful to explore what

the patient thinks is preventing them from sleeping, what makes them anxious; and

their fears for the future.

Non-drug techniques such as relaxation and exercises in breathing control may be useful

(Payne and Massie 2000).

A validated tool for psychological assessment may be helpful in reaching a decision

concerning medication (see recommended reading).

Factors contributing to psychological issues include:

• Low mood

• Depression (Older individuals with CHF may be more at risk of developing

depression) (Koenig 1998)

• Insomnia

• Anxiety


• Fatigue and lethargy

Medication should be considered to treat effects including:

Antidepressants

Avoid tricyclic antidepressants in view of cardio-toxic side-effects.

• Sertraline 50 mg is a suitable first-line agent unless anxiety is also apparent

• Citalopram 10 – 20 mg daily would be appropriate if anxiety and depression co-

existed

• Mirtazepine 15 – 30 mg nocte is another alternative if nausea or poor appetite

are associated problems

Night sedation:

• Lorazepam 0.5 – 1 mg

• Lormetazepam 0.5 – 1 mg

• Temazepam 10 – 20 mg

Anxiolytics:

• First-line Lorazepam 0.5 – 1 mg sub-lingual especially for

• panic attacks

• Diazepam 2 mg orally tds

• Buspirone 5 mg po

9. Spiritual Pain

Chronic conditions such as heart failure will impact on an individual’s whole existence.

Multiple losses may be experienced such as loss of role both at work and within the

family. Loss of independence may impact on an individuals self image and feelings of

self worth. A sense of hopeless and helplessness may pervade that is not part of a

depression. People with religious beliefs may find comfort from their faith. Spirituality

encompasses hopes, fears and an attempt to make sense of what is happening.

• Awareness


• Sensitive listening

• Identifying an appropriate “opening” question.

• Identifying expert help available locally.

10. Withdrawal of medication and more

As the patient’s condition deteriorates and their prognosis is reduced to weeks, it may

be appropriate to have discussions with the patient regarding the discontinuation of the

following

• Statin agent

• Warfarin

Discussion in relation to end of life care may be initiated at any point and families or

carers should be included with the patients’ permission. The British Heart Foundation

document Implantable cardioverter defibrillators in patients who are reaching the end of

life (BHF 2007) http://wwwbhf.org.uk/publications.aspx addresses the ethical and

practical considerations related to active implantable cardioverter defibrillators (ICDs).

The European Society of Cardiology recommends that patients with palliative treatment

for end-stage HF should have their ICD inactivated, because repeated ICD firing (ICD

storm) can occur and be very distressing in the terminal phase. If a CRT-D device has

been implanted the defibrillator may be disabled and the pacing function maintained

thus avoiding symptomatic deterioration.

Open communications with patients and families is recommended at an early stage of

recognition of end stage heart failure before difficult dilemmas at the end of life.

Studies both in the UK and North America suggest that physicians may not be aware of

the patients’ terminal state and their preferences in relation to active treatment.

(Addington-Hall and McCarthy 1995, Lynn et al 1997)

You will need to contact your local team for advice on the discontinuation of ICDs.

11. Terminal heart failure – the last few days of life

A high proportion of patients with confirmed Heart Failure, up to 40-50% in some

studies, will experience sudden cardiac death, others will deteriorate more slowly. For

those patients seen to be approaching the end-of–life the following points and

communication issues should be considered:

• There needs to be agreement within the team about the patient’s condition


• It may be difficult to accept that the deterioration does not represent failure of

the health care team

• It is important to recognise patients who appear to be approaching the terminal

phase of their illness. It is more difficult to recognise in individuals with heart

failure than in many dying cancer patients

• In heart failure patients may achieve improvement with medication and there

may have been a reversible precipitant

• If recovery is uncertain this needs to be shared with patient and family but the

possibility of further deterioration and death needs to be discussed

• As a patient becomes weaker and has difficulty swallowing there is a need to

discontinue non-essential medications and continue those which will provide

symptomatic benefit.

• Essential medications as opioid analgesics, anti-emetics, and anxiolytics, can be

converted to continuous subcutaneous infusions given over 24 hours via a

syringe driver with “as required” subcutaneous doses available if needed

TERMINAL HEART FAILURE –E LAST FEW DAYS OF LIFE

• Inappropriate invasive procedures such as venepuncture and regular

measurements of blood pressure and pulse should be discontinued

• There is a need to consider the cardio respiratory resuscitation status of the

individual and when appropriate discuss this with the patient and the family.

The subgroup to identify is those patients with:

o Previous admissions with worsening heart failure o No identifiable reversible precipitant o Receiving optimum tolerated conventional drugs o Worsening renal function o Failure to respond within two to three days to appropriate

changes in diuretic or vasodilator drugs o Sustained hypotension


• It may be appropriate to discuss with the patients their wishes in relation to end

of life care and their views on parenteral hydration

• If the patient has an implantable cardioverter defibrillator (ICD), it is important

to consider, and where appropriate discuss with the patient and family, when

would be an appropriate time to switch this off.

• Similarly, if they have an epidural implant it is important to consider when it

would be appropriate to stop topping this up

• There is a need for regular assessment of symptoms and adjustment of

medications if the symptoms are not adequately controlled

• Psychological support of patient and family are very important. Good, clear but

sensitive communication is of paramount importance.

• Spiritual care according to patient’s cultural and religious beliefs is important

Consideration should be given to the use of the All-Wales Integrated Care Pathway for

the last days of life; this would enable a co-ordinated and best practice approach to

care at the End of Life (WAG 2006). The pathway is intended for the use of all

individuals in the last days of life regardless of their disease in all settings. For more

information please consult with your local Specialist Palliative Care Team. Information

about the status of this pathway can be found at:

www.wales.nhs.uk/documents/WHC_2006_030-English.pdf

12. Financial Advice and Support

Individuals and their families also face the continuing problems and practicalities of daily

living. Maintaining the home, ensuring adequate food, heating and warmth are still vital

together with maximising physical and emotional well-being. It is important to ensure

that people have access to appropriate allowances and assistance to negotiate their way

through the accompanying paperwork. A patient advocate may be necessary.

The following benefits may be available to patients,

• Disability Living Allowance (DLA) (if <65 years, need help getting around, help with personal care (or help with both) • Attendance Allowance (AA) (if >65 years, if need help with personal care)


Special rules for Disability Living Allowance or Attendance Allowance – high rate of

allowance if prognosis is less than six months.

For a patient to claim this, the DS1500 and mobility component of the Disability Living

Allowance an application should be completed. If a patient is eligible under the special

rules they may be entitled to Attendance Allowance.

Travel abroad should only be considered with full insurance for patients with End-stage

heart failure and difficulty may be encountered when seeking this. Advice regarding

suitable companies can be obtained from the Hospice Information Service:

Flying home or on holiday, helping patients to arrange international travel (Myers 2006):

(www.helpthehospices.org.uk/hweb/get_Document.aspx?id=4117)

The Citizens Advice Bureau (CAB) is a useful resource for advice and information

regarding practical issues including finance

The Benefits Helpline (BEL) tel. 0800 882200 (free-phone)

WEB: www.direct.gov.uk


13. References

Addington-Hall., J, McCarthy M. (1995) Regional Study of care of the dying: methods

and sample characteristics. Palliative Medicine. 9:27-35

Back, I. (2004) Palliative Medicine Handbook. BPM Books: Cardiff.

BHF (2007) Implantable cardioverter defibrillators in patients who are reaching the end

of life: A Discussion document for Health Professionals. British Heart Foundation: London

British National Formulary (2009) British National Formulary. BMJ Group: LondCardiac

Networks Co-ordinating Group (2009) Cardiac Quality Requirements, CNCG (Jaarsma T

et al (2009) Palliative Care in heart failure: a position statement from the palliative care

workshop of the Heart Failure Association of the European Society of Cardiology.

European Journal of Heart Failure.11, 433-443

Johnson M., Lehman R., (2006) Heart Failure and Palliative Care – a team approach.

Radcliffe Publishing

Koenig HG (1998) Depression in hospitalised older patients with congestive cardiac

failure. General Hospital Psychiatry 20:29-43

Lynn J, Adamson D. (2003) Living well at the end of life: adapting health care to serious

chronic illness in old age. Rand Health

Lynn J., Teno J, M., Phillips R, S. (1997) Perceptions by family members of the dying

experience of older and seriously ill patients. Annals of Internal Medicine.126:67-106

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14. Recommended reading

Pain assessment tools:

Daut R., Cleeland C., Flanery R. (1983) Development of the Wisconsin Brief Pain

Questionnaire to assess pain in cancer and other diseases. Pain, 17 (2): 197-210

Melzack R (19975) The Mc Gill Pain Questionnaire, major properties and scoring

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15. Appendix 1:

The following individuals contributed helpful comments and suggestions as part of a

consultation process.

Jackie Austin, Nurse Consultant, Heart Failure Services, Aneurin Bevan LHB

Ian Back, Palliative Medicine Consultant, Cwm Taf LHB

Paula Cooper, Palliative Care Clinical Nurse Specialist, Cwm Taf LHB

Irene Logan, Hospital Macmillan Nurse, Betsi Cadwaladr ULHB

Kate Novotny, Lead for Chronic Disease Management, Betsi Cadwaladr ULHB

Mark Payne, Consultant Cardiologist, Betsi Cadwaladr ULHB

Trudi Phillips, Heart Failure Nurse Specialist, Cwm Taf LHB

Marlise Poolman, Specialist Registrar in Palliative Medicine, Betsi Cadwaladr ULHB

Jane Price, Discovery Interview Lead, South East Wales Cardiac Network

Graham Thomas, GP and North Wales Cardiac Network Lead GP

Jenny Welstand, Lead Heart Failure Nurse Specialist, Betsi Cadwaladr ULHB

Also consulted were:

Members of the Cardiac Networks Co-ordinating Group, the Cancer Services Co-

ordinating Group, and the All-Wales Palliative Care Steering Group

This document is based on the Merseyside and Cheshire Cancer Network

Guidelines (MCCN, 2005). We gratefully acknowledge their work.

The drafting of this version has been led by Melanie Lewis, Macmillan Nurse

Advisor, Palliative Care, South East Wales Cancer Network and Dr Rhian Owen,

Macmillan Consultant in Palliative Medicine. The support of Hywel Morgan

South East Wales Cancer Network Manager is gratefully acknowledged. Dr

Jonathan Goodfellow, Consultant Cardiologist, ABM University Health Board and

Mrs Elizabeth Gould, Co-ordinator, Cardiac Networks Co-ordinating Group also

provided support.

endorsed by the all wales palliative care … referral...guidelines for referral to specialist...

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