Patient advice and information regarding supporting patients in the

community with Covid-19. Information about medication and non-medical ways to help. What is the purpose of this guidance? This guidance is intended to support you to care for a person with Covid-19 symptoms at home where a decision has been made between the medical team and the patient and their relatives or carers to keep the patient out of hospital and provide comfort and symptom relief in what may be the last days of their life. This will cover:

1) How to provide the best possible care for someone while safeguarding your own health as well;

2) The medications and some non-medical support that can help a person to be as comfortable as possible.

3) What to expect as a person becomes more unwell and journeys through what may be the last days of their life.

We hope that it will help reduce the fears and worries that you might have. Please know that you are not alone. There are people you can contact to help you through this as well as the medical teams that are supervising the care. Even though the medical teams might be unable see you face to face, they are available to you for support throughout this difficult time using other ways of communication. How to provide the best possible care for the patient while safeguarding your own health as well When caring for a person with Covid-19 extra precautions need to be taken because it is so infectious. If there is coughing, ask the patient to turn their face away from you, or if too unwell try and briefly cover the nose and mouth with a light cloth. Remember to wash your hands regularly. Being in contact with someone with Covid-19 also means that you will need to isolate. If you need to have food or medicines delivered and have no one to ask, you can let the medical team know who will direct you to an appropriate service. There are lots of ways to help a person suffering feel less frightened. As well as medication there are practical and compassionate ways to support a person as they become more unwell. Some of the medications will cause increased sedation and sleepiness so please consider if there are important conversations you need to have together in case, they become too drowsy to easily talk to you.

The main symptoms of Covid-19 disease are cough, fever, breathlessness, anxiety, confusion, and agitation, and people may also have fatigue, muscle aches and headache. Medications below describes symptoms and what medicines will help, how quickly, and how they work. The medical team will discuss with you how these will be given and how you might be involved in giving them. If you do administer any medications please ensure you write it in the chart provided. It is very important to only give the doses and intervals stated on the labels of all prescribed medication. Please note that there are lots of different medicines to help different symptoms and the names might be different. Non-medical support that can also help is below this medication section Medications Symptoms of Covid-19 disease include: cough, fever, breathlessness, anxiety, confusion, agitation; and people may also have fatigue, muscle aches and headache. There are medicines that can help each of these symptoms. Some medicines help more than one symptom. NONE of these medications themselves are intended to shorten the life of a patient with Covid-19 - they are for the relief of symptoms, using relatively small doses, and it is possible that some patients will recover with the help of these medicines. Breathlessness - Covid-19 can cause severe breathlessness and this can cause anxiety which can make it worse. Breathlessness is not greatly helped by oxygen but there are other very effective medicines as well as practical support (see below) which can help breathlessness and these include:

Morphine (opiates) - in small doses morphine and other opiates are a great help to relieve breathlessness as well as the anxiety. The doses are less than we would use for pain so it is important that the label is read carefully for doses and frequency. Some opiates work very fast and others are long acting and give a steady continuous release. Patches are very helpful for a continuous longer release of opiate to support breathlessness.

Examples are morphine sulphate; oramorph; oxynorm; diamorphine; buprenorphine patches/fentanyl patches/matrifen patches.

lorazepam tablet under the tongue and a calm environment such as a loving voice /

music etc can ease the breathlessness and lessen anxiety. Cough - Covid-19 can cause a persistent cough which can make breathlessness worse. Medicines which help Cough include:

Antibiotics. Covid-19 is a virus, it can cause a viral pneumonia but antibiotics do not work on viruses. However, we are seeing that the virus can sometimes cause the body to produce a bacterial chest infection (bacterial pneumonia) and in these cases antibiotics might help. There are different antibiotics including amoxicillin; clarithromycin; doxycycline; co-amoxiclav and others.

Simple honey and lemon in warm water might ease a cough, and codeine linctus or

oral codeine 15mg can be obtained from pharmacies. If an alcohol drink is desired it is ok to give in small quantities.

Morphine - morphine can be given like a cough medicine in small doses. This may

cause drowsiness. alternatively, a patch on clean dry skin can be applied which gives a slow release of a low dose opiate.

Examples are morphine sulphate; oramorph; oxynorm; diamorphine; buprenorphine patches/fentanyl patches/matrifen patches

Fever

Paracetamol 500mg to 1 gram every 4-6 hours will help lower temperature. Anxiety / Agitation / confusion - people often feel anxious when breathing is difficult and they feel scared. They may become confused or struggle to understand or remember, or their personality may change. It’s important to check if the cause is reversible like having a full bladder or bowel - constipation can respond to laxatives such as senna, lactulose and movicol. There are several medicines that help quickly to relax and calm a patient. Sometimes the sedation might help them sleep more deeply. Medicines which help anxiety include:

Morphine - described above and also helps with anxiety and agitation

Lorazepam - this is like valium and can have a calming effect within 20-30 mins. The full effect (normally sleepiness) lasts for around 6-8 hours.

Midazolam - this has a calming effect and also works within 20-30 minutes when taken by mouth.

Levomepromazine (also called nozinan) - this is a sedative also used for anxiety

(and for other symptoms) and might be given by injection for quick relief of anxiety and nausea. Tablets take about 2-3 hours to work.

haloperidol is another sedating anti-anxiety mediation that might be given and there

are others. Noisy breathing / secretions - Sometimes saliva or mucus builds up in a person’s throat or chest and it can’t be cleared, making a rattling noise. This can sound very upsetting but it is important to know that the person is very unlikely to be aware as will be in a deep

sleepy state of unconsciousness. Because the person is so sleepy, they cannot clear their throat so in most cases they do not know it is happening. Medicines which help with secretions and noisy breathing include:

Hyoscine hydrobromide - this might be given as a patch as a person with this symptom is unlikely to be able to swallow at this time. The patches start to work in around 3 hours. They can also help nausea and vomiting. Sometimes two patches are more helpful.

Nausea / vomiting

Levomepromazine (also called nozinan) - as well as treating anxiety this is very helpful for nausea and vomiting which could be a side effect from morphine - like drugs. If morphine is given by injection there will be some levomepromazine or a drug like it, combined in the same syringe.

Pain / muscle aches - Covid -19 can cause uncomfortable chest tightness and muscle aches.

Simple analgesia such as paracetomol can help, otherwise codeine from a pharmacy (15mg -30mg up to four times daily) or prescription tramadol are stronger painkillers.

Chart showing Medications and their uses

Medication What it’s for How it’s given Side effects -management

Morphine /oramorph/diamorphine/oxycodone/oxynorm/ etc.

Breathlessness, cough, pain, anxiety

By simple injection to upper arm or by mouth or by patch (patches can take about 12-17 hours for full effect)

Levomepromazine for nausea and vomiting

Lorazepam Anxiety, delirium, confusion, agitation

By mouth (takes 20-30 mins)

Unlikely side effects

Midazolam Anxiety, delirium, confusion, agitation

By simple injection (few minutes) to upper arm or by mouth (20-30 mins)

Unlikely side effects

Hyoscine Nausea, secretions, mucus production, rattle like breathing sounds.

By mouth or. By patch (Scopoderm) behind the ear, sometimes 2 are used (about 3 hours).

Rarely can cause worse confusion - remove if this happens.

Levopromethiazine Sedation and anti -sickness

Injection (takes about 2-3 hours)

Antibiotic (doxycycline / amoxicillin / co-amoxiclav / clarithromycin

Bacterial Chest infection (pneumonia) secondary to the virus

By mouth See individual packs.

Drugs Patch: buprenorpine Fentanyl (matrifen)

Hyoscine patch

Morphine liquid

Lorazepam Antibiotic Other

Date/time/amount

Non – medical Support that can also help There are many simple practical things that can make a great difference to an unwell person. Looking after yourself – Caring for an unwell patient who may die can be exhausting both physically and emotionally. Take time out to eat and rest. Talk to people if you are able to. Try to share the physical care with other people too when possible and remember it’s ok to leave a person’s side to have a break. Positioning - Sitting upright or leaning forward can help breathing (if patient is too drowsy sometimes lying on their side in the recovery position can be helpful) Relaxation techniques - Favourite music, telling stories, singing, prayers for some, recalling memories, showing photos, etc. Cooling - Do not use fans because this can increase the risk of virus spread - Keeping the face cool with a facecloth dipped in cold water wiped around the mouth, nose and forehead can soothe Humidify room air Open windows/doors – Allow fresh air to circulate Hydration - Offer drinks / sips of fluids / honey and lemon in warm water / suck cough drops / ice cubes to suck, – yoghurt, ice cream, jelly etc. may be helpful. Food – As the body shuts down food and water are not necessary to keep it going. When a person is dying, they lose their desire to eat or drink and finally their ability to swallow. This is difficult to accept because we associate food with health and feeding people as an act of love. Drips and intravenous lines for fluid offers no benefit and can be harmful. Dry lips - Vaseline/plain lip salve can help keep lips moisturised Washing – Sometimes it may be too disruptive for the person to have a full wash. Just washing their hands and feet can feel refreshing. Severe weakness/ unable to get to the toilet:

The Bladder and Bowel UK https://www.bbuk.org.uk/ has helpful advice. incontinence pads to absorb urine (avoid sanitary towels as they don’t absorb as well as incontinence pads) and absorbent sheets to put on the bottom sheet to soak up any leaks.

If nothing is available, men can pee into a large empty jar such as a coffee jar. Women find it difficult to pee in a bucket, so a large towel folded between her legs that can go straight in the washing machine may be easier.

For stool (poo), if nothing is available, a few sheets of newspaper can catch stool and be immediately put into a bin bag and tied off. If possible, drop the stool off the newspaper into the toilet first, but beware – newspaper may block your drain.

If you can’t get disposable gloves, ordinary household gloves are fine and can be washed in the way you wash your hands under running hot water with liquid soap. Disposable gloves can be recycled by doing this too. Then hang them on the line to dry in the sun – sunlight helps sterilise.

If you cannot get washable or disposable bed pads you can improvise as follows: Lay any form of plastic sheeting you have available at home, or large opened large plastic bags (e.g. large bin liners) over the mattress, sticking joins with Sellotape or similar. Cover them with large bath-towels in a couple of layers, then put the sheet on top.

To change the sheet, if the person is too weak to get out of bed, lay the clean sheet longways along the side of the bed and roll it longways. Then roll up the dirty sheet as you unroll the clean one to replace it.

What to expect as a person becomes more unwell and journeys through what may be the last days of their life; During this time, it is likely that you and others close to you will experience frightening and painful feelings and emotions. Your mind might race with thoughts such as ‘what if’ thinking, and automatically come up with worst case scenarios. It might feel as if you are on an emotional rollercoaster that won’t stop. It will stop.

Take a deep breath.

Here we will describe to you what to expect as a person becomes more unwell and journeys through what may be the last days of their life. It is to help reduce the fears and worry that you might have because our minds are very powerful when we feel completely helpless and groundless.

Changes to notice as a person becomes more unwell

Covid-19 can cause different symptoms including cough, fever, breathlessness, tight chest, pain, anxiety, confusion and agitation. The medicines used to help treat the symptoms will usually make a person more relaxed and sleepier; this will help to reduce their anxiety about struggling to breathe which often makes getting breath more difficult. Sometimes saliva or mucus builds up in the throat or chest and they cannot clear it. It makes a rattling noise which can sound very upsetting but it is important to know that the person is not in pain or distress and is very unlikely to be aware. Because the person is so sleepy and often unconscious, they cannot clear their throat and they do not know it is happening. As a person becomes less well, they become progressively more tired and will tend to sleep for longer periods of time. You may also notice that their sleep becomes deeper, and it becomes more difficult to wake them. They will enter periods of deep unconsciousness. Sometimes breathing patterns change and can sound very fast one minute, then very laboured the next. This is not distressing for the patient but can cause worry to those around them but it is normal as the body slowly closes down,

Even if a person can’t respond they can still hear. You can tell them they are loved, by you and by others. You may cry and feel heartbroken, or withdraw into a numb quietness, there are lots of emotions and feeling these are part of the healing process that we need to happen in time. Don’t let your emotions stop you saying all you want to say. Hearing is often the last sense to go. The person dying will gain comfort from your love and words.

As they become less well and sleepier, they do not feel like eating or drinking so much. This can be difficult for families and carers to watch but it might be helpful to know that the person is not feeling thirsty, hungry or uncomfortable because of it. It is not necessary to encourage food or drink. As time goes on more and more time is spent in this deep sleep, or unconscious state. Towards the very end of life, a person will often simply be unconscious all the time. Their breathing pattern will change: sometimes deep and slow, sometimes shallow and faster. Eventually breathing will slow down, and then very gently stop.

How do you know the person has died?

Their pattern of breathing may change shortly before death, when they are already unconscious

There may be long gaps between breaths or between a run of breaths

Then the breathing stops completely

Their colour changes and they look very pale and with a bluish tinge and gradually their skin looks mottled

Their heartbeat is no longer felt by a hand on their chest

After death

Write down the time you think they died.

Place a towel or cloth over the mouth and nose to protect others from the fine particles of air that might come through the body and might contain virus.

There is no rush.

This is a very difficult time and you may want to take half an hour of peaceful time.

If you feel you can, put a pillow or rolled up towel under the jaw to support their mouth closed and close their eyes, by gently pressing the eyelids closed for 30 seconds.

If you can, lie their limbs straight.

There is nothing more you need to do.

You don’t need to phone 111 or 999.

Telephone the on-call number you have been given in your own time to be told what to do next.

Telling other people who are close to the person

You may find it helps to start with “I’m very sorry – I have very bad news….”

Don’t feel you need to speak on the phone to people if you don’t feel up to talking “I’m sorry, I’m exhausted, can I call you later” will help protect you.

Lindsey Crocket April 2020