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By Dr. Tom Bradley and Dr. Keertana Anne
Next Lesson - Men's Health
Abstract
- Palliative care aims to optimise life and minimise suffering of patients with terminal diseases to allow the patients to die with dignity.
- Palliative care is provided by a multidisciplinary team who care for both the patient and the patient’s family, with a heavy influence on holistic care.
- There are multiple legal documents that can be used to document the patient’s wishes of how and to what level they want to be cared for.
- There are a set list of medications that are used in the end of life period to manage the common symptoms that those at the end of life experience.
Core
Palliative care as a speciality that was formed in the UK in 1987, meaning that it is a very new speciality. The focus of palliation and palliative care is the optimisation of a patient’s quality of life through symptom management, and it can be provided to people with serious, progressive illness, including alongside active treatment as well as at the end of life. This means that palliative care can be offered as the main goal of care in 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 receive news of their terminal condition. This could be within hours, days or months and includes patients with the following:
- A long-term incurable disease (such as cancer or dementia).
- General frailty with lots of co-morbidities, that are not expected to survive for much longer.
- 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 will almost always include the doctors that are directly involved in taking care of their immediate health needs, the palliative care team and the patient’s general practitioner. Other members of the multidisciplinary team can include: dietitians, occupational therapists, counsellors, carers and chaplains (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 with an idea of what the patient wants, and should be completed while the patient has capacity to make their wishes clear if they progress to the point where they no longer have the capacity 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); any patient preferences on where they would like to die; any religious or spiritual beliefs they would like to have reflected in their care; and also, how they would like to be given support in performing activities of daily living (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.
Advance decisions on the other hand are legally binding. They are also known as ‘living wills’, and they allow the patient to communicate decisions about refusing any life-sustaining treatments, 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. Patients cannot request any treatments, 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 had mental capacity at the time of writing the decision, they specified which life-sustaining treatments they wish to refuse and the circumstances in which they are refusing this, and the document is written, signed and witnessed. If it refuses life-sustaining treatment, it must also state that it applies even if the person’s life is at risk. Only when the advance decision document is valid, will it take precedence over and decisions or actions that are taken in the best interest of the patient.
One example of this is the ReSPECT form system that is used in some hospital trusts in the UK. In some hospital trusts, the ReSPECT form is used alongside or instead of a DNACPR form. It is a broader emergency care plan that helps patients record whether they wish to prioritise life-sustaining treatment or comfort in an emergency.
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 (this person/people will make decisions about medical care and support regarding activities of daily living), and property and financial affairs. These decisions need to be made when the patient has capacity to nominate ‘attorneys’, and the document must then be registered with the Office of the Public Guardian. A lawyer is not required, although legal advice may be sought if desired.
After the decision to completely stop curative treatment is made the patient only receives palliative treatment, the primary goal of which 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 should be given regularly, orally if possible (to maintain patient comfort and freedom), and according to the WHO pain ladder.
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, and the drugs are given to the patient to manage any symptoms likely to occur during the last few days of their life. The exact medications given will vary depending on the requirements of the patient and any potential interactions and side effects they may experience, as well as the local guidance on which drugs are available in the local area.
Commonly used drug classes include:
- Pain Relief - morphine or another opioid is given to manage pain. The patient should also be given laxatives, to avoid constipation if they are on a regular dose of opioids.
- Mild Sedation - midazolam or another benzodiazepine may be given to reduce any feelings of anxiety or agitation.
- Secretion Relief - glycopyrronium bromide can be given to reduce terminal secretions. These tend not to disturb the patient, but can be distressing for the family to witness.
- Anti-Emetic - haloperidol or levomepromazine can be given to reduce nausea and vomiting.
These drugs are often prescribed for patients who are thought to be dying, based on an individual assessment of their likely symptoms, preferences, and clinical context. In hospital, appropriate medications may be prescribed on the drug chart, while in the community they may be supplied so that district nurses can administer them if needed.
A dignified death is considered by most to be a good death. The most important factor in a dignified death is that the person dies without suffering. Care of the psychological, emotional, social, and spiritual is required.
Many patients may feel anxious or fearful about death. The patient should be given time to prepare themselves mentally and spiritually for passing 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. Advice and support from the patient’s family should often be sought 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 in order for them to move on in the kindest and most fulfilled way possible.
Edited by: Dr. Maddie Swannack
Reviewed by: Dr. Thomas Burnell
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