End of life care

See the related separate articles Helping patients face death and dying and Palliative care.

This article examines the terminal stage of palliative care; other articles cover symptom control in palliative care:

• Pain control in palliative care

• Nausea and vomiting in palliative care

• Dyspnoea in palliative care

• Prescribing in palliative care

• Palliative care of heart failure

Introduction

Population-based studies of preferences for place of death indicate that over 60% of people (including those who were not facing life-threatening illness at the time) would prefer to die at home.¹

Whilst this has been an important driver for improving end of life care at home, the place of death is not necessarily the highest priority for everybody. In a population-based study involving nearly 10,000 adults across England, only 34% ranked 'dying in preferred place' as their top care-related priority. Other important priorities were the need to be free of pain and the presence of family and friends.

Which conditions might need end of life care?

Terminal care is not just for those with cancer, but is important for other chronic diseases, including heart failure, respiratory failure, severe chronic kidney disease, hepatic failure, multiple sclerosis, motor neurone disease, and dementia, as well as death from general frailty. Each may bring its own challenges in terms of the provision of terminal care. Studies of patients with end-stage chronic obstructive pulmonary disease (COPD), for example, found that they tend not to ask for help actively, and a discussion about support may need to be initiated by the healthcare professional; the main factor preventing discussions is the difficulty in predicting the course of the disease. ²³⁴

When to start end of life care

1% of the UK population will die every year; GPs are encouraged by the Dying Matters Campaign to try and identify their 1% of patients, although this can never be exact.⁵ Identification benefits the individual and those close to them, as well as allowing appropriate care to be planned.

There are several tools to help identify people who may be nearing the end of their life, such as the Gold Standards Framework, the Amber Care Bundle or the Supportive and Palliative Care Indicators Tool [SPICT].⁶ The Gold Standards Framework is a training programme which includes a Prognostic Indicator Guide to assist in this process.⁷⁸

This starts with asking three trigger questions:

• Would you be surprised if the patient were to die in the next months, weeks or days?

• Do they have general indicators of decline - eg, reduced ability for self-care, repeated unplanned hospital admissions, spending more than 50% of their time in bed?

• Do they have specific clinical indicators - eg, cancer metastases, increased frequency of steroid courses (COPD)?

What are the standards of care in this area?

The National Institute for Health and Care Excellence (NICE) and the Care Quality Commission (CQC) have standards for end of life care, and the "One Chance to Get it Right" guidance is also relevant. These are discussed further below - some of the issues are wholly or partly controlled by the GP, others need action from agencies such as social services and nursing.

NICE⁹

NICE state that:

• Adults who are likely to be approaching the end of their life should be identified using a systematic approach.

• Adults approaching the end of their life should have opportunities to discuss advance care planning.

• Adults approaching the end of their life should receive care co-ordinated between health and social care practitioners within and across different services and organisations.

• Adults approaching the end of their life and their carers should have access to support 24 hours a day, seven days a week.

• Carers providing end of life care to people at home should be supported to access local services that can provide assistance.

"One Chance to Get it Right"

"One Chance to Get it Right" was published in June 2014 by the Leadership Alliance for the Care of Dying People, whose members include the General Medical Council (GMC), NHS England, the Nursing and Midwifery Council and the Royal Colleges of GPs, Nursing and Physicians.^{10 11} It provides guidance in the care of dying people and is aimed at all clinicians in hospital and community.

Five "Priorities of Care" are described and form the focus of care at the end of life, irrespective of the place of death.

1. The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person's needs and wishes, and these are regularly reviewed and decisions revised accordingly.

2. Sensitive communication takes place between staff and the dying person, and those identified as important to them.

3. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

4. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

5. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.

CQC

End of life care is one of the themes of CQC inspection; UK practices are expected to have a palliative care register, regular palliative care meetings and a plan as to how they are finding their 1%, and to be aware of the Five Priorities of Care and show how they apply them.¹²

The CQC has found significant variations in the quality of care received by, for example, people of different ethnic background, sexual orientation and social background.¹³ Despite this inequality, the UK ranks first for the quality of palliative care in 80 countries around the world. ¹⁴

Communication

Clinicians must support adults approaching the end of their life to participate in decision making, by having processes in place to establish the amount and type of information they would prefer.⁶ They should also have systems to provide information in a way that meets the patient's communication needs and preferences - for example, how it is given (verbally, on paper, by text, email, or other assistive technologies) and provision of professional interpreters. There should also be arrangements to review and anticipate the patient's information needs and preferences as circumstances change.

Dying at home

For the patient wishing to die at home there must be adequate back-up. This usually means a close person such as a spouse, long-term partner, close relative or a team of people who are available 24 hours a day. Night sitter services are available but costly. The carer must be prepared to cope with the emotional and physical needs of the patient and these can be very demanding.

Team approach

A multidisciplinary approach is often required to provide all the skills to care for adults approaching the end of their life. They may need support in:⁶

• Disease-specific questions, including symptom management, hydration and nutrition, and access to medication.

• Physical and psychological issues not directly related to the disease.

• Social matters, including support and advice (for example, signposting advice on benefits, finance and third-sector, local or national support services).

• Support with activities of daily living, including access to equipment and rehabilitation services.

• Pastoral, religious and spiritual guidance.

• Cultural matters.

This team may include a GP, district nurses, Macmillan nurses, social services and a minister of the patient's religion, if they have one. There should be a key worker who is the main point of contact for the patient, the family and the rest of the team. The key worker liaises and who ascertains that nothing is left undone or duplicated - they may not be the most senior member of the team.

Local protocols should be followed to ensure that the ambulance service and out of hours team are aware of advanced care decisions, including on resuscitation, and issues such as the availability of end of life drugs in the home. This is usually done via a database which all local professionals can access.

Emotional needs

Fear is common. Try to be honest with the patient and answer questions to the best of your ability, including being honest about uncertainties. You may need to start by signposting that you are about to discuss some difficult questions. Don't be afraid to ask whether they would like to talk about what to expect and what is likely to happen.

Before the terminal stage, the patient may have already considered their end of life care and how they want it to be managed. Advance care plans, also called living wills or advance care directives, are the vehicle for this and should be taken into account if a person has lost mental capacity.⁶

They may also wish to make peace with relatives or friends, and to make a will if one has not been done.

General debility

As death approaches, the patient will become weaker and will sleep more. They will need help in and out of bed and to the toilet. Appetite usually diminishes and weight falls. Be prudent in deciding if intensive nourishment is in the interest of the patient. Food dense in calories is often poorly absorbed and may produce diarrhoea and the distress of faecal incontinence. Pads and waterproof under-sheets are useful. As well as the unpleasantness, incontinence is a danger to the integrity of skin; if it breaks down, it may never heal again. A urinary catheter may be required and this should be discussed using a shared decision making approach.

Immobility, poor circulation and inadequate nutrition all predispose to pressure ulcers. Frequent turning, sheepskin to lie on and ripple mattresses are all options. Turning can sometimes be very painful but necessary.

Pain and distress

See also the separate Pain control in terminal care article.

Pain is what patients fear most although, in reality, other features such as dyspnoea may be more distressing. There is a very wide range of other problems that will be encountered and most patients will experience a number of them. These can include:

• Insomnia.

• Anorexia.

• Constipation..

• Sweating.

• Nausea.

• Dyspnoea.

• Dysphagia.

• Neuropsychiatric symptoms.

• Vomiting.

• Urinary symptoms.

• Dyspepsia.

• Paresis.

• Diarrhoea.

• Pruritus.

• Dermatological symptoms.

The hospice movement has done much to further knowledge about the management of pain and distress in terminal care. Principles of management include the following:

• Keep to oral medication for as long as possible.

• Try to avoid injections.

• Patches for drugs such as fentanyl are expensive but may be useful. Syringe drivers can be valuable.

• Let others, including the patient or carers, decide to increase the dose if required but keep a general overview to ensure that a rational regime is in place.

• If doses are too far apart the pain becomes severe and debilitating and requires a very high dose to suppress it. It is better to give lower doses more regularly, to keep pain under control.

• In the terminal stages decide what routine drugs can be stopped, for example drugs like statins whose effect takes place over many years. Sensitive discussion is needed here, to avoid the perception that the person is no longer important enough to spend money on, or that you are trying to hasten their death.

• The central anxiolytic action of the opiates is very important and drugs including benzodiazepines, tricyclic antidepressants and phenothiazines can enhance the effect. Despite their effect of suppressing the respiratory drive, they can also be valuable in alleviating some of the distress of dyspnoea of respiratory or cardiac failure but they should be used with care.

Palliative care may require sedation for symptoms other than pain, such as involuntary movements or delirium, although the cause, such as medication, dehydration or hypercalcaemia, should be identified and treated if possible. Palliative sedation does not hasten death, and the patient and their relatives can be reassured that it is not euthanasia, but its use is, according to the BMA, 'a serious decision which requires careful examination of doctors’ motives and the availability of possible alternatives'. ^{151617 18}

As death approaches, the amount of time spent drowsy or comatose increases, the lucid time decreases and increases in medication are usual with increased dose and frequency. This is usual and the clinician should not be unduly concerned or surprised when it happens.

Ethical Issues

There are many ethical issues surrounding end of life care, from the ethics of removing intravenous feeding to assisted dying.

In order to assist clinicians with these difficult issues, the General Medical Council (GMC) has published guidance "Treatment and care towards the end of life: good practice in decision making".¹⁹

Salient points are as follows:

• Care should be equitable.

• Those involved in decisions about care towards the end of life should be aware of the Human Rights Act.

• All reasonable steps should be taken to prolong a patient's life but there is no absolute obligation to prolong life irrespective of the consequences for the patient or the patient's views.

• Every adult patient should be presumed to have the capacity to make decisions about their care and treatment unless proved otherwise.

• If an adult patient lacks capacity, the decisions made on the patient's behalf must be based on whether treatment would be of overall benefit (including the option not to treat) and least restrictive of future choices. You must consul in consultation with those close to the patient.

• Different decision-making paths should be followed for patients who have capacity and those who do not (full details are provided in the GMC guidance).

Sometimes patients or relatives may request the health professional to end their life. The BMA has published guidance in this area - the key points are as follows: ¹⁵

• All forms of assisted dying are illegal in the UK.

• A decision about whether to prosecute someone is taken on a case-by-case basis by the Crown Prosecution Service (CPS) in England and Wales; the Public Prosecution Service (PPS) in Northern Ireland; and the Crown Office and Procurator Fiscal Service (COPFS) in Scotland

• When faced with a request from a patient for assisted dying, doctors must respond professionally and compassionately, and continue to support patients in their ongoing care and treatment.

• Doctors should avoid any action that the law might consider to be assisting, facilitating, or encouraging suicide.

• Doctors who are unsure as to how a particular action might be construed by the law should seek up-to-date legal advice

It is appropriate to give as much medication as is needed for pain. As long as the intention is to relieve suffering, and the dose is proportionate to that intention, this does not constitute euthanasia or assisted dying, even if an unintended effect is to hasten death. This is known as the 'doctrine of double effect.'

Caring for the carer²⁰

Caring for a loved one who is dying is a very demanding time. The emotional turmoil, often compounded by lack of sleep, takes its toll. It can produce feelings of anger or guilt as well as difficulty with tasks such as continence care and lifting. Carers need to know what to expect, and who to contact in a variety of situations. For example, they may find the "death rattle" of terminal breathing or Cheyne-Stokes breathing most distressing.

When the person dies, speak with the carers - if they are registered with you, consider offering to see them after the funeral or asking if they need bereavement counselling. If not, encourage them to reach out to their own GP if they need support.

Death in the young

When an old person dies, one can rationalise a degree of satisfaction at the end of "a good innings". When a young adult, an adolescent or a child dies, emotions are compounded and the impact is enormous both for the family and the professionals involved.²¹ Whilst it is important to ensure adequate bereavement support is available for the family and carers of a child who has died, it is also important that professionals involved have an opportunity to debrief with colleagues.²²

Conclusion

Care at the end of life exemplifies the benefits of the continuity of care and continuing responsibility that are the cornerstone of general practice. It is the ultimate in holistic care. Show competence and compassion and it will also be hugely professionally rewarding.