Aspirations for a ‘good death’

• Understanding that death is imminent and what is likely to happen.

• Feeling in control.

• Being free of pain and other symptoms.

• Dying at home or place of choice.

• Being with family and friends.

• Resolving personal conflicts and unfinished business (e.g. funeral planned and paid for) and having time to say goodbye.

• Making sense of the universe within personal beliefs and values system.

• Having privacy and dignity.

• Confidence that life will not be prolonged unnecessarily when futile.

• Access to appropriate spiritual and religious support.

• Access to information and expertise of whatever kind is necessary.

• Knowing that one’s wishes, including advance statements, are and will be respected.

Age and Place of death

In the UK 500,000 people die annually.

In the UK 80% of deaths occur in people aged over 65.

Sixty-five percent of women die aged 75 or over.

Seventy percent of people would choose to die at home, but most deaths occur in institutions, as Table 17.1 shows.
People over 80 are more likely to die in nursing homes.
People under 65 are more likely to die at home.

Table 17.1 Place of death (based on Office for National Statistics for 2009)

Percentage of deaths	Location
55%	NHS hospitals
18%	Private hospitals, nursing homes and residential care homes
5%	Hospices
22%	Own home or elsewhere (e.g. public places)

Recognizing the Last Year of Life

In the UK, 1/3 of general practices now use the Gold Standards Framework (GSF). This aims to improve early identification of patients who are deteriorating. The patient’s GP is prompted to consider:

Would you be surprised if this person were to die in the next 6–12 months?
Do you think the person is aware?
Can they be approached to talk about likely trajectory?

If the GPs can identify this group, they can explain the significance of their condition to the patient and their family, provide information, reduce fear of the unknown and offer better planning of supportive and palliative care.

Possible warning signs:

Recurrent hospital admissions.
Weight loss > 10% over 6 months, serum albumen < 25 g/L.
Exhaustion.
Needing more help with activities of daily living.
Already on maximal therapy.
Cardiac cachexia, breathlessness at rest in heart failure.
Oxygen dependency, right heart failure in COPD.
Worsening renal failure with nausea, pruritus, fluid overload.
Deterioration of speech, swallow and aspiration in neurological conditions.

There is a danger that in insisting on observing the patient’s right to know, we may neglect the patient’s right not to know. It is usually sensible to take some notice of a relative’s plea, ‘For Heaven’s sake don’t tell him – it would kill him’, but not to be bound by it. If a patient makes it clear that they do not wish to be burdened with diagnostic and prognostic information it is only humane to continue to offer the opportunity but do not force the issue. Remember your duty of confidentiality and do not inform relatives without the explicit consent of a competent patient. The health care team is different because they are all bound by a similar ethical code, but this may not apply to the manager of a care home, so bear this in mind.

Breaking the bad news

There are a few generally accepted guidelines:

• Suggest that the patient asks a family member or friend to be present at an appointed time – this warns them that the situation is serious.

• If possible, take a nurse with you.

• Pre-plan the discussion: check your information, make sure that you have time and ensure privacy.

• Sit beside the patient, signalling that you are willing to spend time.

• Identify the relatives and introduce yourself.

• Start by finding out what the patient already understands. Often the patient will have insight that their dramatic weight loss must be due to a cancer.

• Use a warning shot: ‘I am afraid I have some bad news for you.’

• Avoid jargon. Explain in simple terms what the diagnosis is and what that is likely to mean.

• Break the news into small sections and check the patient understands what you have said so far.

• Do not be afraid of eye contact, physical contact or silence.

• If you are ordering more tests explain what they are for.

• Try not to remove all hope or to give a precise prognosis. Offer a second opinion, if wanted.

• Do not be afraid to speak of dying, but only give as much information as they can cope with, and agree to meet again.

• Do not strive for too much detachment – patients and relatives often appreciate it if they see that the doctor or nurse is affected emotionally.

• Undertake to continue support and to relieve symptoms.

• If treatment is palliative explain how the palliative care team, Macmillan nurses, etc. will be involved, as appropriate.

• Ask if the patient or relative has questions.

• If you are asked something you do not know, say you will find out and get back to them.

• Record what was said, and to whom, in the notes.

• When giving relatives the news that the patient is in their last few days/hours, it is helpful to be able to offer the Liverpool Integrated Care Pathway for the Dying (LCP), so that you are actively managing symptoms.

Advanced Care Planning (ACP)

Although 68% of people asked say they are comfortable talking about death, only 29% have discussed their wishes with their families and only 4% have an advance statement.

ACP has been defined as a process of discussion between the patient, their care providers and often those close to them about their future care. It may lead to:

An advance statement.
An advance decision to refuse treatment (ADRT).
Appointment of a personal welfare LPA.

ACP should be considered in patients with long-term conditions and in the broad context of end of life planning, for example after a person has settled into a care home. A helpful approach is to acknowledge that the person is well at the moment, but ask whether they have views on what they would like to happen in the future. ACP is important in conditions where cognitive deterioration is likely, such as early dementia or PD, but should be encouraged in everyone as ‘none of us has a crystal ball’. An advance statement of wishes may be hard to draw up because of the huge number of variables and in English law a person cannot demand treatment, for example tube feeding. A general discussion may benefit the family and at least ensure that a will is made and there is some discussion about funeral arrangements. However, it may be easier to specify what is not wanted.

Advanced Decision to Refuse Treatment (ADRT)

Competent patients may choose to refuse treatments such as PEG tubes, dialysis and antibiotics. Usually patients draw up these forms with their family and GP. The decisions are legally binding and doctors should respect them. Refusing treatment may result in an earlier death, and the patient must be made aware of this and specifically include this on their form. If a patient no longer has capacity but has an LPA the attorney must be involved in discussions about the person’s health care.

Hospice Care

Still regarded as the gold standard provider of palliative and end of life care.
Offers short in-patient admissions to control difficult symptoms with a view to getting the patient home to die, if that is their choice.
Day care facilities for symptom control.
Opportunities to address emotional and spiritual needs.
May provide outreach to a wider group of patients dying at home.

Symptom Control

Pain

Whereas acute pain which lasts for 2–4 h is treated with analgesia as needed, chronic pain, which is common in advanced disease, is better managed with longer acting analgesics given in anticipation of pain. The dose will require titration to the individual patient. The principles are the same whether the cause is malignancy or an inoperable gangrenous leg. The usual concept is that of the ‘analgesic ladder’. This implies a long and weary climb to the top, whereas in practice the number of steps is usually only two or three.

1. Paracetamol, given regularly, has been proven to reduce even severe pain. NSAIDs are generally avoided in old age but have a role in bone secondaries.

2. The next step is a ‘weak’ opioid. Many avoid high dose codeine in older people as the side-effects of nausea, constipation and confusion are often disproportionally high for the additional analgesia. A synthetic opioid analogue is often used. Meptazinol seems to cause less confusion and constipation than tramadol (although this is much cheaper).

3. Strong opioids are usually given regularly, with additional doses as needed for breakthrough pain. Oral, rectal, transdermal and injectable preparations are available. In the UK, the principal drugs are morphine and diamorphine, although the latter is illegal in other countries, notably the USA, where hydromorphone is used instead. Diamorphine is more soluble than morphine, permitting the injection of smaller volumes, making it comfortable to administer subcutaneously and it may cause less nausea. In addition to analgesia, some gain benefit from the euphoriant effect of these drugs, but others find this distressing.

The main problems associated with strong opioids are:

Drowsiness, may be unacceptable, but it usually wears off within a few days.

Constipation is universal. Prescribe a strong laxative such as Movicol or co-danthramer (restricted to terminally ill patients because of its carcinogenic risk), which combines lubricant and stimulant properties.

Nausea. Co-prescribe regular anti-emetics initially, but again nausea usually wears off (see Table 17.2).
Respiratory depression, cough suppression and hypotension seldom limit use of these agents in end of life care.
Tolerance and addiction. These are not issues in end of life care, but explain this to the patient so they don’t ration themselves.

Table 17.2 Causes and treatment of nausea and vomiting

Causes of Pain Requiring Specific Treatments

1. Neuropathic pain: responds better to tricyclic antidepressants, anticonvulsants (e.g. pregabalin, gabapentin or valproate) or transcutaneous electrical nerve stimulation (TENS) than conventional analgesics. Nerve blocks and other specialist interventions may be required.

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