endorsed by the all wales palliative care … referral...guidelines for referral to specialist...
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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
All-Wales Referral and Symptoms Guidelines Final May 2010 2
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
All-Wales Referral and Symptoms Guidelines Final May 2010 3
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
All-Wales Referral and Symptoms Guidelines Final May 2010 4
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
All-Wales Referral and Symptoms Guidelines Final May 2010 5
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
All-Wales Referral and Symptoms Guidelines Final May 2010 6
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
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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
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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
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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.
All-Wales Referral and Symptoms Guidelines Final May 2010 10
• 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
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• 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)
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• 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
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• 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.
All-Wales Referral and Symptoms Guidelines Final May 2010 14
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
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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
All-Wales Referral and Symptoms Guidelines Final May 2010 16
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
All-Wales Referral and Symptoms Guidelines Final May 2010 17
• 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
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• 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
All-Wales Referral and Symptoms Guidelines Final May 2010 19
• 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
All-Wales Referral and Symptoms Guidelines Final May 2010 20
• 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)
All-Wales Referral and Symptoms Guidelines Final May 2010 21
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
All-Wales Referral and Symptoms Guidelines Final May 2010 22
13. References
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14. Recommended reading
Pain assessment tools:
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All-Wales Referral and Symptoms Guidelines Final May 2010 25
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.