Dr Rachael Marchant explains the importance of individualised care for patients at the end of life, with reference to the challenges posed by COVID-19
Read this article to learn more about:
- current guidance on end of life care
- management of symptoms at the end of life, including those of patients with COVID-19
- practical ways of implementing current guidance in everyday general practice.
End of life care is a core part of general practice in the UK. It is essential to keep up to date with current guidance on caring for people approaching and at the end of life, and to be able to effectively communicate with patients and their carers and manage any symptoms that cause distress. As a result of the COVID-19 pandemic, new challenges around end of life care have arisen, including effective advance care planning, symptom management, and practical issues such as the need for personal protective equipment (PPE). It is important to remember that, although the death of patients is a normal part of our work, dying or losing someone close to you is a major life event for those involved.
1. Know the patient’s wishes
Identifying patients approaching the end of life, and providing opportunities to discuss their needs and wishes and document these in an advance care plan, is an approach that was supported in guidance before the emergence of COVID-19.1 A copy of the advance care plan should remain with the person in their home, and should travel with them if they are admitted to hospital or another care setting.1 Advance care plans should be individualised; they should document things that are important to the patient rather than just taking the form of a discussion on medical decisions such as whether resuscitation or other interventions should be attempted. That said, discussions about resuscitation are also important to have and document. Knowing what is important to a person makes decision-making with them or in their best interests easier. For example, if a patient’s top priority is to have all their family around them when they die, admission to a care setting where visiting is not currently possible may not be right for them, even if it may have been previously.
NICE provides a useful definition of advance care planning (see Box 1), which is helpful for understanding the topics that could be included.1 However, the list is not exhaustive, and if someone has strong wishes about something, it is often reasonable to include it. It is important to explain to patients and their carers that they can change their mind, that the document is not legally binding, and that it may not be possible to promise to meet all wishes and goals—but that the document allows care to be guided by what is important to them.
Box 1: Advance care planning1
Advance care planning is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline.
An advance care planning discussion might include:
- the individual’s concerns and wishes
- their important values or personal goals for care
- their understanding about their illness and prognosis
- their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.
Advance care planning is one part of the process of personalised care and support planning.
© NICE 2019.End of life care for adults: service delivery. Available from: www.nice.org.uk/guidance/ng142 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.
2. Understand how to manage symptoms
Managing patients at the end of life is a key component of general practice. Common symptoms include pain, nausea and vomiting, breathlessness, agitation, and excess respiratory secretions. The management of these symptoms has not changed significantly since the advent of COVID-19,2 and new guidance on the management of COVID-19 symptoms including at the end of life references existing NICE guidance on the care of dying adults in the last days of life for symptom management.3 A detailed breakdown of this guidance is beyond the scope of this article, but a NICE-endorsed summary of the NICE guideline on the care of dying adults is available from the Royal College of General Practitioners.4
Anticipatory prescribing is common in primary care to facilitate quick access to symptom-relieving medications in the community. In the context of COVID-19, the guidelines suggest such prescribing should take account of ‘potential waste, medicines shortages and lack of administration equipment by prescribing smaller quantities or by prescribing a different medicine, formulation, or route of administration when appropriate’.2 Alternative choices may be needed, and family/carers may need to administer medications in the event of a shortage of health and care staff.2 In practice, this would likely have implications in terms of some level of training for those involved.
3. Communicate everything
Communication is central to general practice and particularly to effective end of life care. COVID-19 has added new challenges in this respect, such as reduced face-to-face consulting and the wearing of PPE. Current NICE guidance on the care of dying adults in the last days of life emphasises the importance of communication.3 The guidance recommends adopting a shared decision-making approach to decisions around end of life care, and giving the dying person information about their prognosis (unless they do not wish to be informed) and the options available to them.3 Medications should be reviewed, and the risks and benefits of any new medication or intervention being considered should be discussed with the dying person and those important to them if they wish.3
Effective communication should take into account the preferences of the patient as to how they would like to receive information, who they would like to be involved, and how much or little information they would like to receive.
4. Know and use the multidisciplinary team
NICE recommends identifying ‘the most appropriate available multiprofessional team member to explain the dying person’s prognosis’ based on confidence, competence, and rapport.3 Practically, this is easier if you know the skills of the team involved. The multidisciplinary team (MDT) around a dying person may be wide, and will often involve professionals outside of the immediate practice team, such as community nurses, palliative care nurse specialists, paid carers or care home staff, and many others. The dying person may have a long-standing rapport with a hospital specialist or team depending on their condition, or they may be well known to an individual GP. Where possible, the most appropriate person should be identified and enlisted.3 This statement is not intended to be used as a reason to avoid what are often considered difficult conversations, and sometimes it is most appropriate to at least start conversations rather than wait for a specific person to be available. Within the MDT, there will be a large amount of knowledge and experience and a mix of skills. In many cases, this is advantageous to the dying person, and involving appropriate people at appropriate times is helpful. Palliative care specialist support should be sought early where there are concerns about managing conversations or symptoms.
5. Be aware of how to manage COVID-19 symptoms
The symptoms of COVID-19 that may require management include persistent cough, shortness of breath, fever, agitation, anxiety, and delirium. In patients considered to be approaching the end of life, symptom control is especially important and, for the most part, these symptoms are managed as for any other end of life illness.
Cough is less commonly covered in end of life guidance, and the new COVID-19 symptom management guidance gives some good suggestions for managing this pharmacologically as well as through simple measures such as not lying the patient on their back (Table 1).2
© NICE 2020. COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community. Available from: www.nice.org.uk/ng163 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.
Initial management: use simple non-drug measures, for example taking honey
A teaspoon of honey
First choice, only if cough is distressing: codeine linctus (15 mg/5 ml) or codeine phosphate tablets (15 mg, 30 mg)
15 mg to 30 mg every 4 hours as required, up to 4 doses in 24 hours
If necessary, increase dose to a maximum of 30 mg to 60 mg 4 times a day (maximum 240 mg in 24 hours)
Second choice, only if cough is distressing: morphine sulfate oral solution (10 mg/5 ml)
2.5 mg to 5 mg when required every 4 hours
Increase up to 5 mg to 10 mg every 4 hours as required
If the patient is already taking regular morphine increase the regular dose by a third
Seek specialist advice for patients under 18 years old
Consider addiction potential of codeine linctus, codeine phosphate and morphine sulfate. Issue as an ‘acute’ prescription with a limited supply. Advise the patient of the risks of constipation and consider prescribing a regular stimulant laxative
Avoid cough suppressants in chronic bronchitis and bronchiectasis because they can cause sputum retention
6. Talk about hydration
As healthcare professionals, we are aware that loss of appetite, thirst, and the ability to eat and drink can be a normal part of the dying process, and that there is often no reason to intervene. However, NICE guidance does recommend that the dying person is supported to drink if they are able and wish to do so, and offered frequent care of the mouth and lips. NICE also recommends discussing the risks and benefits of clinically assisted hydration with the dying person and those important to them.3 If a person has distressing symptoms that may be related to dehydration, such as delirium or thirst, and oral intake is not adequate, consider a trial of artificial hydration, with review every 12 hours.3 It is actually quite rare that artificial hydration is needed, but the discussion is important in supporting the dying person and those close to them.
7. Individualise care
NICE guidance is clear that all parts of communication, planning, and symptom control for those approaching the end of life should be individualised, and that decisions should be shared with the patient and others they wish to be involved in their care.3 This means that the care and the conversations will be personal to the patient, their situation, and their wishes.
8. Facilitate contact with loved ones
The latest guidance from NHS England on compassionate visiting suggests that, even in the context of COVID-19, the dying person should be offered a visit from a loved one or faith leader.5 Guidance is provided on the use of PPE and risk minimisation for visiting in this situation.5
It is also important to offer practical options for the dying person to keep in touch with loved ones where physical visiting is not possible. There are examples of successful virtual visiting strategies, such as the availability of internet-connected equipment for staff to facilitate contact with families by video call, volunteer message services, and initiatives such as ‘comfort pebbles’, where a personal message can be written on a decorated stone.5 Changing times are an opportunity for innovation and, however it happens, safe contact between patients and loved ones is likely to be beneficial, provided that it is done with the consent and support of those concerned.
9. Look after yourself and your team
Looking after yourself and your team has never been more important than in recent months. Working during the COVID-19 pandemic has raised new challenges in all areas of the health service. Making sure that you and your team are taking time to care for yourselves, discussing concerns and worries, and accessing professional support when needed is vital to providing good care. GPs can access support through the practitioner health programme.6
In the context of COVID-19, it is also essential to ensure that you and your team wear appropriate PPE and follow the latest infection prevention and control guidance.7
Remember that your team includes those who are directly caring for the patient, be these formal carers or a neighbour doing a bit of shopping. Recognising and ensuring support for formal and informal carers is a key part of supporting the dying person.
10. Care does not end with death
Care of a dying patient does not end at the point of death. Timely completion of paperwork such as death certification, cremation forms, and even referrals to coroners are all part of good care at the end of life. Provision of or signposting to bereavement support where needed is also vital. In addition, timely review of care where a death has not gone as planned can both provide support to the team concerned and facilitate learning and service improvement for future patients.
The COVID-19 pandemic has raised many challenges in healthcare, and the need for effective advance care planning has become clearer during this time. The fundamental principles of compassionate, individualised end of life care supported by excellent communication have not changed, and are essential in caring for patients dying with or without COVID-19. Looking after ourselves and our teams remains fundamental to being able to deliver this care effectively, and is perhaps more important than ever in current times.
GP and GPwER, Essex
RCGP/Marie Curie Clinical Support Fellow for End of Life Care
RCGP Essex Faculty Board
South Essex LMC
Want to learn more about this guideline?
Read the related Guidelines summary
- NICE. End of life care for adults: service delivery. NICE Guideline 142. NICE, 2019. Available at: www.nice.org.uk/ng142
- NICE. COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community. NICE Guideline 163. NICE, 2020. Available at: www.nice.org.uk/ng163
- NICE. Care of dying adults in the last days of life. NICE Guideline 31. NICE, 2015. Available at: www.nice.org.uk/ng31
- Marchant R. Top tips based on NICE guidance care of dying adults in the last days of life (NG31). London: Royal College of General Practitioners, 2017. Available at: www.rcgp.org.uk/clinical-and-research/resources/toolkits/-/media/068342B4A4984C21BB8C101138085620.ashx2017
- NHS England. Clinical guide for supporting compassionate visiting arrangements for those receiving care at the end of life. London: NHS England, 2020. Available at: www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0393-clinical-guide-for-supporting-compassionate-visiting-arrangements-11-may-2020.pdf
- NHS. Practitioner health. www.practitionerhealth.nhs.uk/ (accessed 23 June 2020).
- HM Government. COVID-19: Guidance for the remobilisation of services within health and care settings. Infection prevention and control recommendations. London: HM Government, 2020. Available at: assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/893320/COVID-19_Infection_prevention_and_control_guidance_complete.pdf