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By Dr. Tom Bradley and Dr. Keertana Anne
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Contents
Abstract
- Palliative care aims to improve the quality of life of people with serious, progressive illness and to relieve their suffering, including helping those who are dying to die with dignity.
- Palliative care is provided by a multidisciplinary team (a team of different healthcare professionals) who care for both the patient and the patient’s family, with a heavy influence on holistic care (care of the whole person, not just the illness).
- There are several documents that can be used to record the patient’s wishes about how and to what level they want to be cared for. Some are legally binding and some are not.
- A small group of medicines is commonly prescribed in the last days of life to manage the common symptoms that people at the end of life experience. The exact choice is individual to each patient.
Core
Palliative medicine, the branch of medicine devoted to palliative care, was recognised as a distinct speciality in the UK in 1987. The focus of palliation (relieving symptoms and suffering without curing the disease) and palliative care is the optimisation of a patient’s quality of life through symptom management. It can be provided to people with serious, progressive illness, both alongside active treatment (treatment aimed at the disease itself) and at the end of life. This means that palliative care can be offered as the main goal of care for patients who are at the end of their life, or as a supplement to active treatment of the disease. It aims to make the patient as comfortable as possible, by managing their symptoms and providing support for the patient and their loved ones.
Patients should ideally begin to plan their end of life care as soon as they learn that they have a life-limiting (terminal) illness, meaning one that cannot be cured and is likely to shorten life. End of life care may last a few days or months, or sometimes more than a year. People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this is not always possible to predict. This includes patients with the following:
- A long-term incurable disease (such as cancer or dementia).
- General frailty (being weak and less able to recover from illness) with several other long-term conditions (co-morbidities), which mean the patient is at increased risk of dying within the next 12 months.
- A condition in which the patient is at a higher risk of passing away suddenly.
Provision of palliative care is a multidisciplinary task and requires a team of healthcare professionals with a range of skills to provide the best possible care. The patients need a holistic approach when being provided care, and the team involved should consider the biological, psychological and social implications of the disease progression on patients and their loved ones.
The members that make up the team depend on the individual care needs of the patient, but can include the doctors that are directly involved in taking care of their immediate health needs and the patient’s general practitioner. Many healthcare professionals, such as the GP and community nurses, provide palliative care as part of their jobs. Some patients also need the specialist palliative care team. This is made up of different healthcare professionals, such as consultants trained in palliative medicine and specialist palliative care nurses, and it also advises other professionals on palliative care. Other members of the multidisciplinary team can include: nurses (such as community and specialist palliative care nurses), dietitians, occupational therapists, physiotherapists, pharmacists, social care staff, counsellors, carers and chaplains (who give spiritual and religious support to people of all faiths or none), to name a few.
An advance statement highlights the preferences, wishes and beliefs of the patient in order to direct the patient’s future care. It aims to give anyone providing care an idea of what the patient wants. It should be completed while the patient has capacity, in case they later become unable to communicate their wishes for themselves.
This can include where they would like to be cared for (at home, in hospital or in a care home) and where they would like to die. It can also include any religious or spiritual beliefs they would like to have reflected in their care. It can cover how they would like to be supported with activities of daily living (everyday tasks such as washing, dressing and eating), including things as simple as how they like their tea.
An advance statement is not a legally binding document, but should be used as a guide by anyone providing patient care, in order to respect their wishes and maintain dignity at the end of their life.
In England and Wales, advance decisions on the other hand are legally binding, as long as they are valid and apply to the situation. They are also known as ‘living wills’, and they allow the patient to communicate decisions about refusing specific treatments, including life-sustaining treatments (treatments that replace or support failing body functions), and the circumstances in which they will be refused. These can include ventilation support, cardiopulmonary resuscitation or any medications, like antibiotics. This provides the patient with more control over how they want to experience the end of their life. An advance decision can only refuse treatment: patients cannot use it to demand a particular treatment, and they also cannot ask a healthcare professional to help them end their life.
The patient makes advance decisions when they have the mental capacity, and ideally with the support of a clinician. The advance decision is considered valid if the patient was aged 18 or over and had mental capacity when they made it, they specified which treatments they wish to refuse and the circumstances in which they are refusing them, and they have not withdrawn it or done anything that clearly contradicts it. If it refuses life-sustaining treatment, it must also be written, signed and witnessed, and it must state that it applies even if the person’s life is at risk. Only when the advance decision is valid and applies to the situation will it take precedence over any decisions or actions that are taken in the best interests of the patient.
A related document is the ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) form. It is not an advance decision and it is not legally binding. The person and their health and care professionals agree it together. It records recommendations for care in a future emergency in which the person cannot make or express choices. These include a recommendation on whether CPR (cardiopulmonary resuscitation) should be attempted, so it records what a separate DNACPR (do not attempt cardiopulmonary resuscitation) form would otherwise record. It also records an agreed focus of care, either more towards life-sustaining treatment or more towards prioritising comfort. Where it has been adopted locally, it can be used in the person’s home, an ambulance, a care home, a hospice (a centre that specialises in end of life care) or a hospital.
In England and Wales, the Lasting Power of Attorney (LPA) is a legal document that allows the patient to appoint one or more people (the ‘attorneys’) to make decisions for them when they lack the mental capacity to make the decisions for themselves.
There are two types of LPA: health and welfare (the attorney makes decisions about medical care and support with activities of daily living), and property and financial affairs. A health and welfare LPA can only be used when the patient lacks capacity. A property and financial affairs LPA can be used as soon as it is registered, with the patient’s permission. The patient can make one type or both. The LPA must be made when the patient has capacity to nominate ‘attorneys’, and it must then be registered with the Office of the Public Guardian (the government body that registers LPAs). A lawyer is not required, although legal advice may be sought if desired.
Once the decision is made to stop treatment aimed at curing the disease (curative treatment), the patient receives only palliative treatment. Its primary goal is to manage symptoms and ensure they are as comfortable as possible. Each patient will have different symptoms they require managing, including nausea and vomiting, constipation, loss of appetite, and pain.
Pain management in palliative care can be difficult. Guidance has been offered by the World Health Organisation (WHO), stating that pain medications should be given ‘by the clock, by the mouth, and by the ladder’. This means that analgesia (pain relief) should be given regularly, orally if possible (to maintain patient comfort and freedom), and according to the WHO pain ladder. The ladder is a stepped approach. Weak opioids (painkillers related to morphine, such as codeine) are the middle step, for mild to moderate pain, and are usually combined with simple painkillers such as paracetamol. Strong opioids such as morphine are the top step, for moderate to severe pain. The WHO updated its cancer pain guidance in 2018, and the ladder is no longer recommended as a strict protocol. In the UK, NICE advises that adults with advanced and progressive disease who are starting a strong opioid are offered regular oral morphine.
If the patient is felt to be reaching the end of their life, clinicians can prescribe certain medications to make the process as comfortable as possible for the patients and their family. This is called anticipatory prescribing. The drugs are prescribed in advance, so that they can be given without delay if the patient develops symptoms that are likely to occur during the last few days of their life. They are given only when a symptom needs treating. If the patient cannot take medicines by mouth, they are given by injection under the skin (subcutaneous) or into a vein, not into a muscle. The exact medications given vary with the patient’s needs, possible interactions and side effects, and the local guidance on which drugs are available.
Commonly used drug classes include:
- Pain Relief: morphine or another opioid (a morphine-like painkiller) is given to manage pain. For patients who have not had medicines for symptom control before, the dose starts at the lowest effective level and is adjusted to the response. Specialist advice should be sought before using strong opioids in patients with moderate to severe renal or hepatic impairment (reduced kidney or liver function). The patient should also be given laxatives, to avoid constipation if they are on a regular dose of opioids.
- Anxiety and Agitation: midazolam or another benzodiazepine (a sedative medicine) may be given to reduce any feelings of anxiety or agitation (restlessness and distress). Causes that can be treated, such as unrelieved pain or a full bladder, should also be looked for.
- Secretion Relief: glycopyrronium bromide can be given to reduce terminal secretions (secretions that collect in the throat and airways and make the breathing noisy in the last days of life) if they are causing distress. Non-drug measures should also be considered. The noise can be distressing for the family to hear, but it is unlikely to cause the patient discomfort.
- Anti-Emetic: haloperidol or levomepromazine can be given to reduce nausea and vomiting. The choice depends on the likely cause and on the side effects of each drug.
All of these drugs are often prescribed in advance for patients who are thought to be dying, based on an individual assessment of their likely symptoms, preferences, and clinical context. Opioids and benzodiazepines can also be used to relieve breathlessness. In hospital, appropriate medications may be prescribed on the drug chart, while in the community they may be supplied so that district nurses (nurses who visit patients at home) can administer them if needed.
A dignified death is often considered to be a good death. A key factor in a dignified death is that the person dies without suffering. Care of the person’s psychological, emotional, social and spiritual needs is required, and what matters most differs from person to person.
Many patients may feel anxious or fearful about death. The patient should be given time to prepare themselves mentally and spiritually for death, with support from health professionals, and any resources such as a counsellor or chaplain should be provided. There is no right place to die, but if possible, death should occur in the place according to the patient’s wishes. If the patient agrees, or if they lack capacity, the views of their family and others important to them should be sought and taken into account in this period. The caring team and family for the person should also be provided with ample support via any grief services available to help ease this transition.
A good death is not just symptom control. It is caring for all of the patients’ needs so that they die in the kindest and most fulfilled way possible.
Edited by: Dr. Maddie Swannack
Reviewed by: Dr. Thomas Burnell and Dr. Marcus Judge
Quiz
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