End-of-life care aims to support people who are in the last months or years of their life. End-of-life care should help a person to live as well as possible until they die and to help them die with dignity. ‘Advanced care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.’ (Sudore et al, 2017: 826).
Advanced care planning is key to improving care for people nearing the end-of-life. It enables better provision of care to help the patient live well and die well in the place and manner of their choosing. The main goal of advanced care planning is to clarify patient's wishes, needs and preferences and to deliver care accordingly. This may include the place where the patient would like to be cared for in their final days, such as at home, in a hospice or a hospital. It is important to establish who the patient would like to decide about care if they lose capacity or are unable to express a preference in the future. The patient may formally appoint somebody to make decision on their behalf using a Lasting Power of Attorney.
During advanced care planning, the patient's decision or thoughts on resuscitation or medical interventions should be discussed, and a ‘Do Not Attempt CPR’ (DNACPR) form signed and countersigned by the GP (Figure 1). The original should be kept with the patient, and a copy with their notes and their wishes recorded.
Gold Standards Framework
The Gold Standards Framework (GSF) is a model of care that allows GP practices to proactively support patients with their palliative care needs. The GSF was developed in 2000 as a grass roots initiative by Dr Keri Thomas, a GP with a special interest in palliative care, and supported by a multidisciplinary reference group of specialists and generalists (Thomas, 2003). The GSF has experienced rapid expansion and is now endorsed nationally as a model of good practice and is included in the Department of Health's (DH) (2008)End of Life Care Strategy. The foundation of the GSF has also been incorporated into the Quality and Outcomes Framework (QoF) and forms part of the General Medical Services (GMS) Contract for General Practitioners (Shaw et al, 2010).
The GSF uses a traffic light system to provide an indicator of prognosis; red, amber and green. Red = days, amber = weeks and green = months. Planning can then be carried out around the predictor:
- Green: start advance care planning discussion and enter the patient's wishes on to a register, such as the ‘My Care Choices Register’. Complete a DNACPR form according to the patient's preference
- Amber: re-visit the advance care plan and confirm all details. Prescribe anticipatory medication
- Red: ensure that the patient has been seen and assessed by their own GP and they are in their preferred place of care if possible. It is important that patient is seen by their GP in the last 2 weeks of life to ensure that a post-mortem is not necessary as it will be documented that this was an expected death.
Anticipatory medications
Patients who are dying often experience new or worsening symptoms or become unable to swallow essential medication, such as analgesics or anti-emetics. Patients who wish to remain at home may require district nurses to administer injections or a syringe pump to control their symptoms. For patients in the community who are in the last few weeks/days of life, it is good practice to prescribe a range of medications that can be kept in the home in case they are needed for symptom control. Anticipatory prescribing is usually carried when the patient reaches GSF amber.
At this point it is important to do the following:
- Stop all unnecessary medications, for example, anti-hypertensive drugs or statins that are no longer needed
- For patients who are able to swallow, continue essential medication
- For patients who are unable to swallow, convert essential medications, such as analgesics, anti-emetics, and anxiolytics to a syringe pump for continuous subcutaneous infusion
- Consider a syringe pump to deliver medicines for continuous symptom control if more than two or three doses of any ‘as required’ medicines have been given within 24 hours
- For patients starting treatment who have not previously been given medicines for symptom management, commence with the lowest effective dose and titrate as clinically indicated. The patient's symptoms should be assessed regularly, at least daily. For those with renal failure, specialist advice for prescribing should be sought and reviewed regularly
- For all patients, prescribe subcutaneous medication for each of the five common symptoms at the end-of-life; pain, nausea and vomiting, agitation and restlessness, respiratory secretions, and breathlessness (Table 1)
- Ensure each drug has an appropriate dose range written on the syringe pump authorisation sheet in case increases are required
- Prescribe water for injection as it is often forgotten and it needed to add to make up the syringe driver to the correct volume
- Ensure patients are prescribed enough stock for weekends and bank holidays. The usual recommendation is 5 days' supply (Watson et al, 2016).
Table 1. Symptom control in end-of-life care
| Symptom | Indication | Drug | Normal strength of preparation used | Starting dose for syringe pump over 24 hours | Subcutaneous interval (prn) dose and suggested frequency | Dose range for syringe pump over 24 hours (daily dose increase with upper limit) |
|---|---|---|---|---|---|---|
| Pain | Opioid naïveSeek specialist advice for patients with renal failure | 1st-line – morphine sulfate | 5 mg, 10 mg, 30 mg | 10–15 mg | 2.5 mg 1 hourly. Calculated as 1/6th of a 24-hour dose | 30–50% dose increments only |
| On oral opioid regularly | See opioid conversation chart for equivalent via syringe pump over 24 hours | Subcutaneous dose | Calculated as 1/6th of a 24-hour dose | 30–50% dose increments only | ||
| Metabolic or drug-induced | Haloperidol | 5 mg/ml | 2.5–5 mg | 2.5 mg increments to a maximum of 10 mg | 1.5-3 mg bd | |
| Central (eg raised ICP) | Cyclizine | 50 mg/ml | 150 mg | Maximum dose 150 mg | 50 mg tds | |
| Nausea and vomiting | Gastrointestinal causes (eg gastric stasis) | Metoclopramide | 10 mg/2 ml | 30–60 mg | 10 mg increments to a maximum of 90 mg | 10 mg qds |
| Multi-factorial | Levomepromazine | 25 mg/ml | 6.25–12.5 mg | 6.25 mg increments to a maximum dose of 25 mg | 6.25 mg tds | |
| Agitation | Anxiety | Midazolam | 10 mg/2 ml | 5–30 mg | 5–10 mg increments to a maximum dose of 60 mg | 2.5–5 mg 1 hourly |
| Hallucination or confusion | 1st-line – haloperidol | 5 mg/ml | 3–5 mg | 2.5 mg increments to a maximum dose of 10 mg | 1.5–3 mg bd | |
| 2nd-line – levomepromazine | 25 mg/ml | 12.5–25 mg | 25 mg increments to a maximum dose of 100 mg | 12.5–25 mg tds | ||
| Respiratory tract secretions | 1st-line | Glycopyrronium | 200 microgram/ml or 600 microgram/ml | 600 microgram | 600 microgram increments to a maximum dose of 1.2 mg | 200-400 microgram 4 hourly |
| 2nd-line | Hyoscine hydrobromide | 400 microgram/ml | 1.2 mg | 600 microgram increments to a maximum dose of 1.2 mg | 400 microgram 4 hourly | |
| Breathlessness | 1st-line | Morphine sulphate | 5 mg/ml, 10 mg/ml, 30 mg/ml ampoules | 5–10mg | 2.5–5 mg increments to a maximum dose of 20 mg | 2.5 mg 1 hourly |
| Associated anxiety | Midazolam | 10 mg/2 ml | 5–10 mg | 2.5–5 mg increments to a maximum dose of 20 mg | 2.5 mg 1 hourly | |
prn – as needed; bd – twice daily; tds – three times a day; qds – four times a day; ICP – intracranial pressure
From: Watson et al (2016)
These principles are applicable to the care of patients who are dying of malignant or non-malignant disease.
Pain
Where a patient is experiencing pain, previously effective analgesia such as non-steroidal anti-inflammatory drugs (NSAIDs) (eg diclofenac or ketorolac) can be used subcutaneously under the advice of the specialist palliative care team. Medications for neuropathic pain should be continued orally where possible.
Morphine is the usual drug of choice for parenteral administration, unless the patient is already maintained on an alternative step 3 opioid or is in renal failure. To give an equivalent daily dose of parenteral morphine, the total daily dose of oral morphine should be divided by 2 (Shaw et al, 2010). Parenteral breakthrough analgesia can be prescribed at 1/6th of the equivalent daily dose of regular opioid. Opioid conversion charts should be used (Table 2).
Table 2. Dose conversions from morphine to second line opioid analgesics used for moderate to severe pain
| Oral morphine | Subcutaneous morphine | Subcutaneous diamorphine | Oral oxycodone | Subcutaneous oxycodone | |||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| 4-hour dose | 12-hour MR dose | 24-hour total dose | 4-hour dose | 24-hour total dose | 4-hour dose | 24-hour total dose | 4-hour dose | 12-hour MR dose | 24-hour total dose | 4-hour dose | 24-hour total dose |
| 2 or 3 mg | 5 mg | 15 mg | 1 mg | 7 or 8 mg | 1 mg | 5 mg | 1 or 2 mg | - | 7 or 8 mg | 1 mg | 5 mg |
| 5 mg | 15 mg | 30 mg | 2 or 3 mg | 15 mg | 2 mg | 10 mg | 2 or 3 mg | 5 mg | 15 mg | 1 mg | 7 or 8 mg |
| 10 mg | 30 mg | 60 mg | 5 mg | 30 mg | 3 mg | 20 mg | 5 mg | 15 mg | 30 mg | 2 or 3 mg | 15 mg |
| 15 mg | 45 mg | 90 mg | 7 or 8 mg | 45 mg | 5 mg | 30 mg | 7 or 8 mg | 20 mg | 45 mg | 30 mg | 20 mg |
| 20 mg | 60 mg | 120 mg | 10 mg | 60 mg | 7 mg | 40 mg | 10 mg | 30 mg | 60 mg | 5 mg | 30 mg |
| 30 mg | 90 mg | 180 mg | 15 mg | 90 mg | 10 mg | 60 mg | 15 mg | 45 mg | 90 mg | 7 or 8 mg | 45 mg |
| 40 mg | 120 mg | 240 mg | 20 mg | 120 mg | 10 mg | 80 mg | 20 mg | 60 mg | 120 mg | 10 mg* | 60 mg |
| 50 mg | 150 mg | 300 mg | 25 mg | 150 mg | 15 mg | 100 mg | 25 mg | 75 mg | 150 mg | * | 75 mg |
| 60 mg | 180 mg | 360 mg | 30 mg* | 180 mg | 20 mg | 120 mg | 30 mg | 90 mg | 180 mg | * | 90 mg |
MR – modified release (long acting)
*Morphine injection is available in a maximum concentration of 30 mg/ml. Oxycodone injection may only be available as 10 mg/ml (50 mg/ml injection may be available in some health boards). Another subcutaneous opioid will be needed for breakthrough pain if patient needs a dose that is in an injection volume above 1 ml – Seek advice.
From: Healthcare Improvement Scotland and NHS Scotland (2019)
For patients who have a fentanyl patch for pain: the patch should be kept in place and changed as usual as stated in their prescription.
Nausea and vomiting
If a patient at the end-of-life experiences nausea and vomiting, the likely cause should be identified. Sources such as bad odours, anxiety, gastric irritation, cough, obstruction and constipation may be treated and eliminated. Anti-emetics can be chosen based on the probable cause. Careful consideration should be given to prescribe the right antiemetic in the right situation.
Nausea and vomiting may occur with opioid therapy, particularly in the initial stages, but can be prevented by giving an antiemetic such as haloperidol or metoclapramide hydrochloride at the same time. Haloperidol is effective for most metabolic causes of vomiting (eg hypercalcaemia, renal failure); however, it can cause extra-pyramidal effects. Metoclopramide is used for nausea and vomiting associated with gastritis, gastric stasis and functional bowel obstruction. Levomepromazine is a broad spectrum anti-emetic that can be used when the cause of nausea and vomiting is unknown, but it can cause sedation (Watson et al, 2016). Antiemetic therapy should be reviewed every 24 hours; it may be necessary to substitute the antiemetic or to add another one (Watson et al, 2016; Joint Formulary Committee, 2019).
- Levomepromazine 6.25 mg subcutaneously as required; and 12.5–75 mg/24 hours via continuous subcutaneous infusion
- Haloperidol 1.5 mg subcutaneously as required; and 3–5 mg/24 hours via continuous subcutaneous infusion
- Metoclopramide 10 mg subcutaneously as required; and 30–100 mg/24 hours via continuous subcutaneous infusion.
Agitation and restlessness
In patients with agitation and restlessness, reversible causes such as urinary retention or drug therapy should be excluded. Contributory symptoms like pain can be treated. Ensuring a calming environment may help symptoms, but it they persist consider drug therapy (Watson et al, 2016; Joint Formulary Committee, 2019):
- Lorazepam tablets sublingually for anxiety (0.5–1 mg 8 hourly)
- Midazolam 2.5–5 mg subcutaneously and 10–60 mg/24 hours via continuous subcutaneous infusion
- Levomepromazine 12.5–25 mg subcutaneously and 12.5–150 mg/24 hours via continuous subcutaneous infusion
- Haloperidol 2.5–5 mg subcutaneously and 5–10 mg/24 hours via continuous subcutaneous infusion.
As this is a specialist area, the prescriber must only prescribe within their own competencies. If symptoms persist or if the patient is not responding, seek advice from specialist palliative care team.
Respiratory secretions
Respiratory symptoms often occur because the patient is too weak to clear secretions. It is usually more distressing for the carers than it is for patient – reassurance and explanation of the symptom is required. Patients may respond to appropriate positioning (semi-recumbent). However, if there is a possibility of heart failure consider furosemide 40 mg. Anticholinergics can also be used (Watson et al, 2016Joint Formulary Committee, 2019):
- Glycopyrronium 0.2 mg subcutaneously and 0.6–1.2 mg/24 hours via continuous subcutaneous infusion
- Hyoscine hydrobromide 0.4 mg subcutaneously and 1.2–2.4 mg/24 hours via continuous subcutaneous infusion
- Hyoscine butylbromide 20 mg subcutaneously and 60–120 mg/24 hours via continuous subcutaneous infusion.
Breathlessness
Again, any reversible causes of breathlessness should be identified and treated. Non-pharmacological management of breathlessness, such as a fan, should be considered. Do not routinely start oxygen to manage breathlessness. Consider managing breathlessness with an opioid or a benzodiazepine or a combination of both (Watson et al, 2016; Joint Formulary Committee, 2019).
Care of the dying patient
It is important to be able to recognise the signs and symptoms that the patient may be in the last few days of life. These include, increasing weakness and immobility, loss of interest in food and fluid, difficulty in swallowing. This often develops over days to weeks. It is important to follow patient's final wishes and ensure that they are in their preferred place of care.
Assess the needs of the patient
Focus on what the patient perceives as problems. Remember symptoms are often under-reported and therefore it is important to explore their fears and pay attention to non-verbal cues of distress.
Assessing the needs of the family
Check the family's understanding of the situation, Address any fears or misunderstandings. Ensure they have adequate professional support.
Hydration and nutrition
Offer oral fluids as tolerated and consider assisted hydration if appropriate. Offer oral nutrition as tolerated, but ensure that the patient is able to swallow and is well supported when feeding. Consider any need for clinically assisted nutrition and ensure good mouth care (National Institute for Health and Care Excellence, 2016). In the last days of life, clinically assisted nutrition such as receiving fluids via subcutaneous or intravenous or actual nutrition may be futile and can cause distressing symptoms such as abdominal colic, nausea and vomiting. As such, conversations surrounding this must be carried out carefully. Artificial hydration and nutrition in end-of-life care is a very emotive subject, as family can become concerned when their loved one is not getting fluid or food. This should be handled with care. Sensitive communication with the patient and their family, and adherence to local and national guidelines should be carried out.
Spiritual care
Ensure spiritual needs and assessed and addressed with the patient and their family/carers.
Conclusion
It is important as health professionals we have conversations about the patient's future wishes with them and their families. Families are often relieved that a plan is in place and they know who to contact, what to expect and how to get help and guidance.
As prescriber in end-of-care, it is essential that we have ensured the correct anticipatory medication is available when the patient needs it.
Key Points
- Advanced care planning can be carried out so that health professionals are aware and supportive of the patient's and their family's wishes
- The Gold Standard Framework can be used as a prognosis indicator
- It is important to make strong links with the local palliative care service
- Anticipatory medication should be put place in a timely manner
CPD reflective questions
- How do you ensure that you are up-to-date with latest palliative care guidelines?
- How do you ensure that patients get the best end-of-life care?
- Reflect on how this article might change how you approach end-of-life care