Palliative Care Co-Ordination Centre

Anticipatory prescribing is the prescribing of medication in advance, so it is available if needed at short notice. It is arranged for patients receiving palliative care at home for potentially life-limiting illnesses.

Why is medication prescribed in advance?

This is done to avoid any delay in providing help for symptoms you may develop at home. When you become more unwell there may come a time when you are unable to swallow medicines by mouth, and medications by injection are needed. The doctor or nurse can give you a prescription for suitable medications in advance, so they can be given at home. This will avoid your admission to hospital if that is not wanted.

If you have problems such as pain or sickness, this can be controlled with injections given by a small needle just underneath the skin by the community nurse. It is very important that this is done without having to wait, so that you remain comfortable.

You may not need them, but just in case, the medications supplied are:

• Morphine for pain and breathlessness
• Haloperidol for sickness
• Midazolam for restlessness
• Hyoscine Butylbromide for noisy fluid in the chest

You may have slightly different medications than these supplied based on your particular needs. Whichever drugs are supplied the aim is to control the same problems. Your doctor or nurse will explain the reasons for this to you.

How do you get the medications?

If the drugs were arranged while you were in hospital they will be provided for you on discharge.

If you are at home the prescription should be taken to the pharmacy as soon as possible and the medicines will be dispensed for you. If the prescription has been sent to the pharmacy electronically this can be collected when it is ready. The pharmacy will let you know when that is.

The doctor or nurse will provide you with a form called an Authorisation Chart when they give you your prescription or drugs. This helps the community nurses to keep accurate records so they administer these injections safely if they are needed.

If the Community Nursing Team have not been involved in the process of obtaining the drugs then call them and let them know they are in place, the number will be in your Community Nursing Folder.

If you are unsure of who to inform or how, please contact the Palliative Care Coordination Centre on 0300 123 0989.

What do you, or your family and carers need to remember?

• The medications might be in your home for some time before they are required.
• The medicines have been prescribed for you. They must not be given to anyone else. If you are concerned that someone who comes into your house misuses drugs, please inform either the nurse or doctor so alternative arrangements can be made for your medications.
• The medicines need to be kept in a safe place. They don’t need to be kept in the fridge. They must be out of sight and reach of children.
• The Community Nursing Team will need to check on these drugs and the Authorisation Chart on a regular basis. This is to ensure they remain in date and everything is written correctly and in place to meet your needs.
• It is very important that medication that is no longer needed is returned by family or carers (not doctors or nurses) to the pharmacy where it was obtained.
• Please be reassured that these drugs are given by professionals only. Your family members or carers will not normally be expected to give them.

Please talk to your healthcare team about when these drugs might be needed. If in doubt call and ask.

If you are in a position where these drugs are needed, call your community nursing team during the day or the Out of Hours contact number during the evening or night.

Your contact numbers are in your Community Nursing Folder.

If the person you are caring for has made the decision, with the support of the healthcare team, that dying at home is the right thing for them then some things are likely to be put into place to help this process.

The person may have something called a ReSPECT plan in place; this is a document that sets out the recommendations for how the person will be cared for at home. If someone who does not know the person visits, then this will help them to understand the situation and advise them on how to act.

If the person has a ReSPECT plan, make sure it is available in the yellow folder the nurses will have provided. If one is not in place then discuss this with any member of your healthcare team to see if one is needed. It is very important that this document is easy to access for anyone who may need it.

You may have been given some medications that can be given to the person by a nurse to ensure comfort when the person is unable to swallow. These will be given by an injection. These need to be stored safely but must be accessible when needed; these drugs will be accompanied by a medication chart that allows the nurses to give them when they are needed.

What are the signs that someone is dying?

It is very hard to tell when someone is approaching the end of their life and when they might die, this is because everyone is different.

Less need for food and drink

When someone is no longer interested in eating and drinking, it can be very hard to accept even when you know it is because they are dying. The body slows down and is unable to digest food or take any goodness from it. The effort of eating and drinking can become simply too exhausting.

You may be able to help the person take a small mouthful at a time and this may be all that can be managed or wanted, it may not be enough to sustain life but it can be very comforting especially if it is something that they enjoy.

If there is little response, this may be due to weakness not lack of appreciation. Simply caring and being together may be of great comfort to both of you. The aim is not to stop giving food or fluids but to accept when this happens naturally and to make sure they are as comfortable as possible. If they struggle or cough, then stop and seek advice.

Quite often when someone is dying we know that there is a risk that food or fluid may “go down the wrong way”, under normal circumstances we would stop them eating or drinking but in the face of death this would seem cruel. However, we do need to make sure it is not causing the person any discomfort or distress.

We accept the risk to allow them the comfort of eating and drinking for as long as they are able. This decision should be discussed with your healthcare team.

Eventually, a person may stop eating and drinking altogether, but unless told otherwise by the healthcare team, we would always offer food and fluid if the person wants it.

Changes in toilet habits

A person who is entering the last days of their life may find the task of going to the toilet too tiresome as they become weaker. They may also be very unsteady on their feet because they are very weak, meaning a trip to the toilet can be very unsafe. In this case, a commode may be placed next to the persons bed, however a person must be safe to use it, or may need help to use it. In cases where it is too unsafe for a person to move, the community nurses may recommend pads be put inside the person’s underwear to collect the person's urine and stool; this will also protect the persons skin.

Keeping a record of any bowel or bladder movement is helpful, including roughly how much and what it looks like.

Medication and treatment

Medication may be stopped when swallowing becomes difficult. Anything that is not aimed at comfort or cannot be taken in the normal way may be stopped, given by an injection, or a new form such as a liquid.

The priority is to treat any symptoms causing discomfort such as pain, feeling sick, breathlessness, anxiety or agitation. Some medications that may have been important in the past may now not be needed if the person is near the end of life.

If someone is no longer strong enough to talk about the symptoms they are experiencing, pain or other symptoms can be shown by them becoming restless or making faces. Anxiety or agitation may also be shown by restlessness but is sometimes associated with confusion, twitching, or jerky movements as well.

The nurses who visit make an assessment upon which the use of medications is based. These are strong medications and we aim to use them as safely as possible to ensure the persons comfort. The aim is comfort but sometimes the drugs can make people drowsier as a side effect.

Withdrawing from the world

For most, the process of ‘withdrawal from the world’ is a gradual one. The person will spend more time asleep and will often be drowsy when awake and show less interest in what is going on around them. This is a natural process and may even be accompanied by feelings of calmness and peace.

Eventually this may lead to unconsciousness, which may last for a few minutes, a few hours, or a few days. A person may still be aware of your presence and be able to hear what you are saying.

Do not be afraid to talk to them and explain what is going on around them. You may wish to sit quietly and hold hands, recall shared memories, or just talk to them, as you would do normally. This can be an opportunity to share time with them and those important to them.

Sometimes people can become distressed and fearful about losing the things that give their life meaning, this is called spiritual distress. Spiritual needs can be about religion, but more often they are about those things that give the person a sense of peace, this may be a pet, music, photographs, the presence of a loved one, or support from a representative or symbols of their religion. The person may want to talk about these things, do not feel these are necessarily problems to be solved; sometimes just sharing thoughts can be all that is needed.

Changes in breathing

Towards the end of life, as the body becomes less active, the need for oxygen lessens. People who suffer from breathlessness are often worried they may die fighting for breath but often it is found that breathing eases as they start to die. Breathing can be easier than it has been for a long time.

However, any breathing difficulties can be made worse by feelings of anxiety or fear. Reassuring words and touch, medication, or the comforting knowledge that someone is nearby can make a real difference.

Occasionally, in the last hours of life, there can be a noisy rattle to the breathing. This is due to a build-up of liquid in the chest, which the person is no longer able to cough up. Medication may be used to try to reduce it and changes of position can help. The noisy breathing can be upsetting to hear but it does not appear to distress the dying person.

Changes that occur shortly before death

The end of life is unique to each person but in most cases there are some common signs that help to indicate that a person is dying. The breathing pattern may change again. There are sometimes long pauses between breaths and / or the abdominal (tummy) muscles will take over the work. The abdomen rises and falls instead of the chest.

Breathing can appear laboured but this is more distressing to you than the person dying. Medication can be given if there are signs of distress but these changes in breathing are an expected part of the process of dying.

Some people can become more restless and agitated as death approaches. Medication can be administered in the form of pain relief and / or a sedative to help ease any symptoms, which may be causing the person distress. Sometimes it can be difficult to tell if someone is distressed or simply trying to move.

The skin can become pale, moist, and slightly cool prior to death. Most people do not wake from sleep but die peacefully and comfortably. Their breathing will get slower and eventually stop. Sometimes it is difficult to pin point the exact moment of death.

After a short time, the body may relax completely and look peaceful. Even though the death is expected, it can still be a huge shock when it actually happens.

As a carer there are many things you can do to help the person feel comforted and supported.

Pain

Helping the person with their medication can be an important support for them, it may require patience but they may still be able to take painkillers, particularly if they are in syrup form. If they struggle or cough, then stop and seek advice.

It can be helpful if you can make a note of any medications that are given for comfort, why they are given, and if they work. This will allow your nurses to work out the best ways to help you. If the person is able, ask them how bad their pain is from 0-10, with the worse pain ever at 10.

Keep a record of when the person goes to the toilet and inform your nurses when they visit; sometimes it can be very painful if someone has not been to the toilet for a long time.

Agitation

Creating a soothing environment can help ease agitation, dimming the lights, and reducing the number of people in the room (people taking turns can be helpful). If the person is a smoker then this could cause restlessness, discuss this with your healthcare team.

Shortness of breath

Simple things like a fan, loosening clothing, opening a window, helping them to lean slightly forward, assisting with repositioning, or cleaning their mouth can help ease breathlessness.

Sickness

It is important to keep the mouth clean and moist if possible, their mouth may appear dry, so you can moisten it with a damp sponge, a baby toothbrush dipped in water, or a spray may be comforting. A lip salve will also help. Your healthcare professional will advise the best way to provide mouth care if you are not sure.

Strong smells or tastes can trigger feeling sick or being sick; loosening clothes, repositioning, and fresh air can help. Keeping a record of symptoms can help including roughly how much and what any vomit looks like.

Contacting community nurses for support

If you need to contact community nurses because a person is uncomfortable or distressed, it is really helpful if you can tell them as much information as you can. You should explain what the problem is, how bad it is, and the things you have already tried. The nurses will get to you as soon as possible but this can sometimes take some time, especially if it is at night. The more information the nurses have, the better they can advise you of things you might be able to do to help ease the persons symptoms while you are waiting.

Coping as a carer

Sometimes caring can feel difficult, carers can feel guilty looking after themselves. However, this is the best way to make sure that you are able to care for your relative or friend. Getting enough sleep, food and activity is important. It sounds simple, but if you are not looking after your own health, you will find it harder to cope.

Enjoy time together

Sometimes you can spend so much time being a carer for someone that you lose your relationship with them. It is important to find ways to enjoy time together. This can be simple things, a shared memory, or watching a favourite TV show.

Make time for yourself

Caring for someone who is dying can be exhausting and we all need a break sometimes. You would not normally spend 24-hours a day every day with someone, so it is important that you make time to be yourself for a while. You should not feel guilty about this, most people who need care would much rather see the people who are important to them continuing to live as normal a life as possible.

Let the healthcare team know if you are struggling

Sometimes it might seem overwhelming, things build up and you feel you cannot manage. It is okay to acknowledge that you are struggling, and it is better to let the healthcare team know before you reach crisis point so they can help you get the extra support you need. Often, with the right support, you will find that you can cope.

Have someone to talk to

Caring for someone who is dying can be very rewarding and you may feel closer to the person you are caring for, but it is also a time when you are likely to experience intense emotions including anger, guilt, stress and sadness.

We are all different and want different kinds of support at these times. If your normal way of dealing with things is to talk to a friend, then this is something you should keep doing. Other people find that support groups really help them.

The "End of Life Home Care Pathway" helps people to be cared for in their own homes or if needed, a care home. The Pathway has replaced the CHC 'Fast Track' pathway locally in order to provide more supportive care quicker, and is in line with the National Guidance and Criteria.

The NHS, through the Palliative Care Coordination Centre, funds the care provided on the Pathway. A health care professional, usually a Registered Nurse, will assess the person's care needs and contact the Palliative Care Coordination Centre. Care will be arranged quickly when someone is at the end of life to ensure their safety and comfort.

People often want to be at home, as they approach the end of their life, either to be discharged from hospital or to remain at home. Care at home will include support with washing, dressing, medication and meal preparation. The Palliative Care Coordination Centre works closely with other services such as Marie Curie and hospices, and can ask for extra help from them if it is needed. In addition to this care, the person will also continue to receive care and support from other professionals in the community such as their GP, Community Nurses, and Hospice Nurses.

It is not always possible for end of life patients to stay at home, especially if this is not safe or becomes too difficult to manage increasing needs. It may be more appropriate to move to a care home for end for life care, where the person can be supported 24 hours a day.

The Palliative Care Coordination Centre will support in co-ordinating the move from home or hospital into a care home. It is important that the person is moved very quickly to a safe and comfortable place of care, as close as possible to those important to them. Once the person is comfortable in their new place of care, this can be reviewed if appropriate.

The Palliative Care Coordination Centre will keep in regular contact with the person, their family or the care home (dependent on where they are being cared for). This regular contact is to make sure that things are as they should be and to provide an opportunity to raise any problems or ask any questions.

Although the aim of the End of Life Home Care Pathway is to urgently support people who are moving towards the end of their life, sometimes once care is in place some people's health may not deteriorate and may even improve. If this happens, the person's needs will be re-assessed to ensure that that they are receiving the right care in the right way. The person, and those important to them, will be involved in any further assessment and kept informed of any changes to their care.

The death of someone close to you can be one of the hardest things you ever have to go through. Bereavement affects people in different ways and a range of different emotions can be felt. It is often characterised by grief, which is the process we have to go through to adjust to the loss.

Practical support

If someone has died at home, the death will need to be verified by an appropriate professional; usually this is a community nurse or general practitioner (GP).

Following this, and when you feel ready, you can contact your chosen funeral director. The funeral director will then take your loved one to the funeral home. During this time before the funeral, they may ask questions about the person and the service to be planned.

Following verification of death

If the appropriate professional who verifies death is not the GP, they will inform the GP. The GP will usually issue a medical certificate stating the cause of death, and will inform you whether this has been sent electronically to the registrar's office or for you to collect as it is in paper form. If the GP is unable to complete the death certificate this will be explained to you and a referral will be made to His Majesty's Coroner for further consideration.

Medication and Equipment

After someone has died it is important to take any unused medication back to the pharmacy, this is in order for it to be disposed of appropriately. Any equipment should be returned to the Integrated Community Equipment Services (Medequip). You will find contact details labelled on the equipment.

If any problems arise please contact the Community Nursing Team.

How do I register a death?

A death needs to be registered within five days, ideally this should be by a relative or someone who was there at the time of death, or the person responsible for making the funeral arrangements.

To register the death you will need to book an appointment. The death should be registered in the district where it happened to prevent any delays. If you need help finding the correct district there is a Registry Office Finder on the Government's website.

To register the death with the registrar you will need the following documentation and information:

• The medical certificate showing the cause of death, signed by a doctor. (This may have already been sent electronically by the doctor).
• The full name of the person who has died (and any other names they once had, such as a maiden name).
• The date and place of death, together with the usual address of the person who has died.
• Their date and place of birth (if this was outside of the UK, you only need to state the country).
• Their most recent occupation.
• Whether or not the person who died was receiving a pension or other benefits.
• The name, occupation and date of birth of their spouse or civil partner, if they had one.

If you have any of the following documents you could also take them with you. The person's:

• Medical card or NHS number
• Passport
• Driving licence
• Birth and marriage or civil partnership certificates
• Proof of address, such as a utility bill or Council Tax bill

The registrar will give you the following in return:

• A certificate for burial or cremation (known as a Green Form), which gives permission for burial or for an application for cremation to be made. This may be sent electronically to your chosen Funeral Director if you have already appointed one.
• A certificate of registration of death.

You will be required to pay for extra copies of the death certificate for legal, financial, and insurance purposes. The registrar will also explain about the Tell Us Once service, which enables you to report a death to most government organisations in one go.

If a death is reported to the Coroner, the documents you need to register the death may be different, in which case contact the Coroner's Office.

Arranging a funeral

The funeral can take place after the death is registered. You should check if the person who has died had already made arrangements for their funeral; this could include prepaid funeral plans or life insurance. They may have told family or friends what they wanted, or given instructions in their will.

If you want to identify a funeral director near you then you can visit the webpage for National Association of Funeral Directors. The costs may differ between funeral directors so you may want to seek details of costs from different companies.

You can pay for a funeral director to arrange the funeral or you can do it yourself. To arrange a funeral without the help of a funeral director, you should contact the cemeteries and crematorium department of the local authority in the area for advice on how to proceed.

To apply for funeral funding support please visit the Government's website or discuss it with your chosen funeral director.

Emotional support

It can be difficult to anticipate how you might feel after the loss of your loved one. There is no right or wrong way to feel following a loss, and it is a very individual experience.

How you may be feeling is individual to you.

The emotions you may feel as you grieve can be mixed, some may be stronger than others. There may be days that you cope better, there may also be days where you feel more overwhelmed.

Numbness

You may find that you feel numb after a loss. This is natural and helps you to process what has happened at a pace that you can manage, and not before you are ready.

Emptiness and sadness

The feeling of sadness and emptiness that follows someone's death can be overwhelming, although this is a natural response. It is ok to cry and feel sad. Feelings of emptiness can occur with the reality of the death.

Anger and hostility

Losing somebody is painful and can seem unfair, you may feel angry or frustrated and want to find something or someone to blame for the loss. You might question whether you or anyone else could have done more.

Fear

Feeling afraid after someone has died is a natural emotion, you may worry because your thoughts and feelings seem hard to control. You might feel anxious about what is coming next, such as the person's funeral. You might feel scared of losing someone else in the future.

Isolation

Losing a loved one can make you feel very lonely. This could be either because you were very close to them, or because you cannot face talking to others and socialising.

Guilt

It is common to experience guilt after someone you are close to dies. You may wonder whether you could have done more to help them, or have regrets about what you have said or done. With time, you are likely to reach some acceptance of what has happened which will help your emotional wellbeing.

Relief

You may feel relieved when someone you love has died and there can be many reasons for this. The person may have expressed that they were ready to die and may have experienced a long illness. Individual circumstances will vary, however it is quite normal to feel this way and it does not mean that you did not love or care for the person.

Talking about your feelings

Talking to someone about how you are feeling, or just talking about the person who has died, can sometimes help to make you feel better. You should try not to keep your emotions bottled up. Some people may be able to talk through their feelings straight away and reach out to people close to them. Others may take time.

Talking can be done over the phone, internet, or through social media if you feel unable to talk to someone face to face. Keeping a diary of your feelings may also be useful. You may wish to talk to family, friends, someone in your community, your faith or spiritual leader, or a healthcare professional. There are also support groups that you can access.

Looking after yourself

Bereavement can affect the way you feel physically, as well as emotionally. You may feel exhausted and find it difficult to get things done, but it is very important to take the time and rest you need to stay well.

If the person who has died was the person who cared for and looked after you, and you do not have any other support, it is important you identify this to a professional.

Usually, if the person dies at home, the district nursing team will be involved. You can speak to them if you need some support and they should be able to signpost you to the most appropriate professional. You can also speak to your GP, they can refer you to other professionals who can arrange support or the care that you need.

Equally, if you do have other support, for example other family members, it will be important to stay connected with them.

Eating and Drinking

Although you may not feel like eating and drinking or have much of an appetite, it is very important to try to eat and drink regularly to help keep you healthy and boost your energy levels.

Sleep and Rest

Grief is tiring, you may find that you cannot sleep, or that your sleep is disrupted. Some people find that they need more sleep than usual. Be kind to yourself and try to rest or nap when you can.

Staying Connected

You may find yourself avoiding social situations, staying at home more and becoming more withdrawn. It is important to stay connected with friends and family, accept any invitations and invite people to visit you. You may feel in time that you are ready to join a local class or club, which may help to lift your mood. Becoming involved in your local place of worship if you have a faith can also be of comfort and provide you with support socially, emotionally and spiritually.

Useful Organisations / Services

Below is a list of support services that you may find useful. There may also be further local services which you can access.

Practical Support Services

Bereavement Register

Register the name and address of a person who has died to help stop unsolicited mail.

• Telephone 020 7089 6403 or 0800 082 1230 for the 24-hour automated registration service
• Bereavement Register website

General Register Office (GRO)

Registers and supplies official information on births, marriages and deaths registered in England and Wales.

• Telephone 0300 123 1837
• General Registry Office website

UK Government website

Government website that contains information about bereavement and the Tell Us Once service.

Office of the Public Guardian

Registers lasting powers of attorney and helps attorneys carry out their duties.

• Telephone 0300 456 0300
• Office of the Public Guardian website

Emotional Support Services

Age UK

Advice and information for people in later life through the Age UK Advice line, publications and website. Age UK advice lines are open seven days a week from 8am to 7pm.

• Telephone 0800 678 1602
• Age UK website

Cruse Bereavement Care

Offers free confidential support for adults and children when someone dies.

• Telephone 0808 808 1677
• Cruse Bereavement Care website

Hundred Families

Offers support, information and practical advice for families bereaved by homicides by people with mental health problems, including information on health service investigations.

• Hundred Families website

Macmillan Cancer Support

Supporting people living with cancer.

• Telephone 0808 808 0000
• Macmillan Cancer Support website

Samaritans

Confidential, non-judgemental support for people in distress, 24 hours a day.

• Telephone 116 123
• Samaritans website

The Compassionate Friends

National self-help organisation through which parents who have been bereaved offer friendship and support to other bereaved parents, grandparents and their families.

Telephone 0345 123 2304

• Email helpline@tcf.org.uk
• The Compassionate Friends website

The Good Grief Trust

Charity providing advice, support and directions to further resources to people affected by grief in the UK.

• Email: hello@thegoodgrieftrust.org
• The Good Grief Trust website

Veterans UK

Administers the pension, welfare schemes, and provides support services to members of the Armed Forces and veterans.

• Telephone 0808 1914 218
• Veterans UK website

War Widows' Association of Great Britain

Gives advice, help and support to all war widows and their dependants.

• Telephone 0845 2412 189
• War Widows' Association of Great Britain website

Winston's Wish

Offers support, information and guidance to people caring for a bereaved child or young person.

• Telephone 08088 020 021
• Winston's Wish website

Hospices across Staffordshire and Stoke on Trent have collaborated to provide 24 / 7 adviceline coverage across the region.

The service is staffed by specialists who can provide advice on most elements of palliative and end of life care including complex symptom management, medications, care plans, and signposting.

The service is available to patients and Health Care Professionals.

The service can be accessed using any of the local Hospice advice line phone numbers or 0300 561 2900.