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Non-cancer palliative care

Four consultants give practical information about palliative care in areas other than cancer

1. Dementia

Dementia contributes to one in eight deaths in England, yet awareness that it is a terminal condition has been slow to develop.

The bulk of care for people with advanced dementia falls to primary care teams and there are several ways GPs can make the end stage better for patients and families.

Identify patients with advanced dementia

It is easy to miss the point at which people enter end-stage illness. The Gold Standards Framework Frailty and Dementia Criteria1 are useful.

Discuss future care early with patients and families

Most people with advanced dementia become unable to communicate verbally, and even if they can, are rarely able to make capacitous choices. As early as possible, discuss with the patient and the family their wishes for when the patient becomes unable to communicate, and document it. Check with them regularly or if there is a crisis, and share your knowledge with appropriate team members.

If possible, avoid hospital admission

There is a four-fold increased risk of mortality for people with advanced dementia in hospital, and an increase in complications and inappropriate care. Consider bolstering care at home before you admit them.

Prescribe emergency drugs pre-emptively

Leaving injectable opioids, anti-emetics, anti-cholinergics (for retained respiratory secretions) and sedatives at home with a prescription can allow use in emergencies. Avoid phenothiazines in Lewy body dementia – they can be fatal.

Work with the local palliative care unit

Ask for their help to keep people at home.

Support the family

Regular respite, future care planning, involvement of supportive organisations and dropping in to see them builds trust and reduces isolation.

Watch out for depression and anxiety and consider admitting the patient to a care home if carers are really struggling.

Mention dementia on the death certificate

Death certificates under-report dementia as a cause of or contributor to death. If dementia contributed to the death, mention it.

Dr Victor Pace is consultant in palliative medicine at St Christopher's Hospice, London

2. Heart failure

Heart failure is common in the elderly, often accompanied by co-morbidities. The condition usually progresses inexorably with a disease trajectory of gradual decline, punctuated by crises due to episodes of decompensation or arrhythmia with the ever-present risk of sudden death. Precise prognostication is, however, difficult.

Communicate effectively

There is much evidence that communication is poor across all care settings.2 Open, sensitive communication is pivotal in ensuring a mutual understanding of the nature of heart failure, the likely response to therapeutic options, and to facilitate shared decision making between those affected and their health professionals.

Assess symptoms of decline

Markers of decline towards the terminal phase may include:

• symptoms refractory to optimal tolerated heart failure therapy

• resistant renal dysfunction, hyponatraemia or hypoalbuminaemia

• non-fluid weight loss in cardiac cachexia

• increasing dependency for more than three activities of daily living

• three hospital admissions due to progressive heart failure over six months.

The diagnosis of advanced heart failure confers a mortality risk and symptomatic burden comparable with cancer, and common intractable symptoms include dyspnoea, fatigue, pain, nausea, anxiety and confusion. Much general palliative care is rooted in primary care. Guidelines outline a multidisciplinary approach, recommending that a key worker co-ordinates their complex medical and social care needs.

Apply end-of-life framework

The major tools of the National End-of-Life Care Strategy in England – the Liverpool Care Pathway, the Gold Standards Framework and the Preferred Priorities of Care – are all applicable to heart failure.3

The Liverpool Care Pathway protocol addresses deactivation of implantable defibrillators, increasingly used in these patients, which can have an impact on the dying process if left operational.

Patients admitted with heart failure have a significant risk of dying over the following 12 months. If the practice has a supportive care register, these patients should be included. The Gold Standards Framework uses the ‘surprise question' as an indicator for entering patients on the register – which asks: ‘Would you be surprised if this patient died in the next six to 12 months?' For a fuller description of the framework, see Professor Keri Thomas's article on prognostication.

Dr James Beattie is consultant cardiologist, Heart of England NHS Foundation Trust and Birmingham and National clinical lead, NHS Improvement


The term ‘biographical disruption' describes the major disruptive experience of an event like a cancer diagnosis. But in a very slowly progressive condition such as COPD, patients may have no sense of biographical disruption at all. A more practical approach is to look at the patient's and carer's needs when they come into contact with health professionals.

Prompts to assess need

Patients often exhibit ‘passive acceptance' of their symptom burden and increasing debility.4 Prompts to consider the physical, psychological, social and spiritual needs of patients and carers include:

• persistent dyspnoea, cough, haemoptysis, fever and chest wall pain, despite maximal therapy

• poor mobility

• increased frequency of hospital admission

• decreased improvements with repeated admission

• expressions of fear and anxiety

• panic attacks

• concerns expressed about dying.

Assess need for referral

Referral to palliative care services will depend on the needs of the patient, which may not correspond to the ‘severity' of their COPD as judged by spirometry. Their MRC dyspnoea score, however, not only documents the presence or absence of breathlessness but also the impact on the patient, which helps guide interventions.

Manage breathlessness

Some suggestions for managing breathlessness and its associated symptoms within a palliative care approach are:

• optimising medical management in conjunction with NICE guidance for COPD

• consideration of long-term or short-burst oxygen therapy for appropriate individuals

• referral to pulmonary rehabilitation services (such as MRC dyspnoea below 3)

• adopting a holistic approach in the assessment of needs as they may be more of a supportive/psychosocial focus.

Drugs for palliating symptoms are often unavoidable – opioids, such as oramorph 2.5-5mg qds, and benzodiazepines like lorazepam 0.5-1mg sl, are helpful either separately or in combination. Remember non-pharmacological methods of managing breathlessness hand-held fans and diversion/distraction techniques for anxiety management etc- can be extremely helpful.

You should also acknowledge the needs of the carer. Support groups such as Breathe-Easy may be very helpful.

Dr Declan Cawley is consultant in palliative medicine and research fellow at East Kent University Hospitals NHS Foundation Trust

4. Motor neurone disease

Motor neurone disease (MND) is rare, incurable and half those diagnosed will die within the following 14 months. GPs have a key role in facilitating a proactive multidisciplinary approach to palliative care.5 The patient should be placed on the practice palliative care register from diagnosis,1 with regular discussion at Gold Standards Framework meetings.

Early assessment by community neuro-rehabilitation services is necessary and palliative care teams can provide additional expertise and support. Anticipation of likely problems will reduce crises and most people will be able to stay at home if they wish.

Ensure advance care planning

The patient's preferences for care should be discussed before communication deteriorates. This may include advance decisions to refuse treatment and resuscitation decisions.

Manage common symptoms

In a patient with dysphagia, eating when not fatigued and use of nutritional supplements may preserve nutrition, but there is increasing risk of aspiration and prolonged mealtimes. Early gastrostomy may be advisable, as late insertion carries significantly increased risk in MND.7

Specialised equipment, such as a light-writer, will help to maintain communication as speech deteriorates.

Sialorrhoea can be troublesome and titration of hyoscine, amitriptyline or glycopyrrolate is appropriate. In resistant cases, botulinum toxin injection of the salivary glands is simple and usually effective for over a month, when it may be repeated. Single-dose radiotherapy is an alternative.

Pain is largely due to immobility, but responds well to physiotherapy, pressure relief and opioids in accordance with WHO guidelines.

Respiratory failure can result from intercostal muscle and diaphragmatic weakness, causing sleep disturbance, morning headache, daytime somnolence or breathlessness.

Symptom management may include non-invasive ventilation or careful titration of opioids and benzodiazepines. In patients without severe bulbar dysfunction, non-invasive ventilation can increase prognosis by around six months if tolerated.7 The GP's support is invaluable in reducing anxiety.

Prepare for rapid deterioration

Death can follow a short period of rapid deterioration, so the team will need to prepare in order to maintain care at home.

The MND Association provides a just-in-case kit with leaflets for carers and suggestions on drugs for use in emergency symptom relief (such as injectable low-dose diamorphine, midazolam and glycopyrronium plus sublingual lorazepam). Descriptions of ‘choking to death' are inaccurate and a peaceful death is usually expected.7

Dr Carol Scholes is Macmillan consultant in palliative medicine, Hertfordshire Community NHS Trust

Dr Declan Cawley is also a spokesperson for the British Lung Foundation, which campaigns for better palliative care for lung disease. It has found one in five people with terminal lung disease – including COPD – have not had a conversation about end-of-life care, but wanted to. For more information on COPD and palliative care, click here or contact the BLF helpline on 08458 505 020

Short-burst or long-term oxygen therapy are options of end-stage COPD Oxygen therapy