Providing timely care

Dandelions blowing in the wind in a meadow

Caring to the end

A guide to end of life care and beyond for unpaid carers in Surrey

Getting a terminal diagnosis

  • When a person receives a terminal diagnosis it can create a wide range of emotions for them and for you as their family carer.  You and the person may feel angry, may feel it is unfair, may feel sad, shocked or in denial. 
  • Living with a terminal illness can sometimes make family relationships difficult, but it can also bring you closer together.
  • The doctor and healthcare team should be honest with the person and you as their carer about what the diagnosis means, the prognosis and what the treatment options are. This includes explaining any medical terms in plain language. They should give all the information the person needs to make a decision about treatment and explain the advantages and disadvantages of each treatment option, including any potential risks and side-effects.
  • The doctor can recommend a treatment but should not pressure the person to accept it.  The doctor should also discuss the impact of the diagnosis on emotional wellbeing and lifestyle as well as any warning signs to look out for and what to do if anything unexpected happens.

Things to think about

  1. As it is difficult for you and the person you care for to absorb information in one go, tell the doctor if either of you want to go over something again. If you don’t understand something then ask it to be repeated or explained in a different way.
  2. Ask for a follow up appointment to address the questions you or the person you care for forgot to ask. Help the person make a list of questions beforehand and help them take notes whilst you are there. Compassion in Dying has published a booklet of questions you may like to ask after a terminal diagnosis. 
  3. ​ Ask the doctor to explain things by using statistics and facts. For example ‘what percentage of people with this illness lives for five years?’. It’s possible that the doctor may not have a precise answer to a question you ask. If they reply ‘it depends’ check this out by asking directly ‘is there no definite answer’?
  4. Get all the information you can about the person’s diagnosis, prognosis, possible treatments, and ongoing care needs. If you are going to be caring for the person you need this information to care safely and appropriately. You may have to press for this information but be brave. Ask about side-effects and how this might impact on your caring role.  
  5. Don’t automatically assume information is shared between the NHS, hospice or care home. Talk to the person you care for about the importance of giving consent to share information (if they have mental capacity to consent) and check information has been passed between professionals.
  6. Ask about any training that might be available to help you with your caring role.

Equipment:

  • Equipment can be bought directly from a specialist supplier or household shop without an OT assessment. This might include more minor equipment items such as a raised toilet seat, pressure mattress, bath hoist, over bed table, wheelchair, crutches or a hospital style bed. If not having an OT assessment it is best the person tries it out first either as a trial period in the home or in the store, particularly if it is an expensive item. You, as the carer, also need to ensure it is safe to use and not putting your own health at risk. If the equipment proves helpful you can still arrange for a social care assessment to see if the person would be eligible for financial help.
  • Equipment such as a hospital bed, mattress or commode can be provided by your local community nursing team. The person’s GP can make a referral to the nursing team and they will come to the home to assess.

Technology:

  • There is a vast array of technology that can be used to assist you in your caring role, from everyday technology such as use of a phone app to connect you to other carers in your family, through to remote monitoring and medication management. 
  • Carers UK have information about different options.  

Adaptations:

Adaptations can range in scale and cost.  It might be as small as fixing an intercom or as large as an extension to the home.  Your local social care team may give financial support for minor adaptations.  You may also be entitled to financial help with more major adaptations via a Disabled Facilities Grant.  Go to Benefits and Entitlements for more information.

Things to think about

  1. Make sure the equipment works not just for the person but also for you.  Carers UK has a room by room guide on types of equipment that may or may not help. 
  2. Any decisions about equipment and adaptations also need to take into account the risks to your own physical wellbeing, particularly where moving and handling of the person is involved. The carers moving and handling team  are able to give you details on how to access a back care assessment by a back care advisor as well as training on how to move and handle the person safely.  
  3. Explore with the person you care for if it is realistic to provide appropriate treatment and care in the home and what impact the necessary equipment, technology and adaptations might have on their home environment.

Managing Medication

  • Whilst the person you care for is still able to swallow, tablets or liquid medicine will continue to be prescribed by their GP. If the person wishes you to help administer their medication then make sure you are giving the medicines at the right time of day.  If you are giving them at the wrong time, then they could not work properly or there could be side effects. Check if the medicines should be taken with food or in between meals.
  • If you know the person is going to have to pay for a lot of NHS prescriptions, it may be cheaper to buy a prescription ‘season ticket’ referred to as a Prescription Prepayment Certificate (PPC). A PPC will cover all NHS prescriptions, including NHS dental prescriptions, no matter how many items the person needs. This doesn’t include other health costs, such as the provision of wigs and fabric supports. There are two PCC options to choose from:
  1. A 3 month PPC costs £29.10 and will save money if the person needs more than 3 prescribed items in 3 months​
  2. A 12 month PPC costs £104 and will save the person money if they need more than 11 prescribed items per year 
  • If the person you care for has a complicated medication regime with different pills taken at different times of the day, consider using a dosette box. These are plastic boxes with small compartments that clearly show which pills need to be taken at what time of day. Dosette boxes are not always available for free on the NHS and they’re not suitable for every type of medicine. Ask your pharmacist for more information about dosette boxes if you think they could be helpful to you or the person. To find out more about how to give pills correctly, keep them organised, compliance aids and obtain some Medicine Safety Tips. ​
  • To find out more about how your local pharmacy team can help, including a large print and easy read guide.
  • When the person is reaching the end of their life, doctors and nurses will advise on how best to minimise disturbance and distress and if some or many of the medications should be stopped as they will no longer be of benefit or are difficult to take. If the person becomes unable to manage tablets or liquid medication then there are other ways medicines can be given, for example a small injection or perhaps a syringe driver. The latter is a small electronic pump which holds a syringe containing the medications required to keep symptoms under control. Attached to the syringe is a long piece of plastic tubing with a small needle at the end, which is inserted under the person’s skin and secured by a dressing. The medication is then delivered very slowly into the arm or other suitable part of the body. A nurse will check the driver every day and will ensure there is a new supply of medications in the syringe. Have a look at the NHS ‘Administering injectable medication‘ for further information. 

Providing physical care

Download this quick checklist on what you can do to practically care for someone who is in their last days and hours of life.

The following also provides information about how you might provide physical care to the person:

Pain

The person you care for may be in pain for a number of reasons:

  1. pressure ulcers
  2. urinary tract infection (UTI)
  3. constipation
  4. heart failure
  5. cancer
  6. arthritis
  • If the person’s mental capacity is impaired, for example because of a UTI or dementia, it will become increasingly difficult for them to tell others that they are in pain or experiencing discomfort. Staff may also assume that challenging behaviour, such as shouting out, are part of the diagnosis, so it is important that you as a family carer, who knows the person well, look out for signs or indicators that the person is in pain as if not recognised and treated the person may become even more agitated.
  • Watching someone you love be in pain is highly distressing. It will be draining for the person and it can affect their mood. They may be angry and irritable making it hard for them to talk and share their feelings which in turn makes it difficult for you as a carer.
  • Not all people who are terminally ill experience pain but if they are then pain relief should be prescribed by their doctor. Sometimes morphine is given to treat serious pain. Although many people are concerned that morphine may hasten death, this is not the case. The person you care for may take morphine as an oral medication. However if they are no longer able to swallow or tolerate oral medications morphine may be given by injection. See Managing Medication. In this case the dose is carefully measured and adjusted. Morphine can also be administered to help with breathing difficulties’. Successful pain relief will bring much needed comfort to the person who is near to dying. 

Things to think about

  1. Don’t be worried about giving the person as much pain medication as prescribed by the doctor. It’s important the level of pain is managed so make sure the level of pain is not overtaking the pain relieving medication.
  2. If you are worried the level of pain is not controlled, tell the person’s doctor or nurse as the medicine can be changed or increased. It may be that a palliative care specialist is needed to help manage pain for a seriously ill person who is in a lot of pain.
  3. Breathing
  4. Difficulties with breathing are a common experience as the person approaches the end of life. The doctor may refer to this as dyspnoea. Breathing difficulties may make conversation with the person much harder. Very near death the person might have very noisy breathing but this is not usually upsetting to them even though it might be to yourself and other family members. This is caused by fluids collecting at the back of  the  throat or by the throat muscles relaxing.

Things to think about

  1. Try raising the head of the bed, opening a window, using a humidifier or fan to circulate air.  Painkillers can also help to relieve the sense of breathlessness. Try turning the person to rest on one side. 
  2. Ask the doctor about any medicine they can prescribe that might help noisy breathing.

Skin

  • Skin irritation can be very uncomfortable and with age, skin will naturally become drier and more fragile so it is very important to take extra care with an older person’s skin. 
  • The face can become very dry as well as lips and eyes and can cause discomfort. The inside of the mouth can also become dry.
  • Sitting or lying in one position puts pressure on dry and sensitive skin and this can lead to painful pressure ulcers. Look out for any discoloured or darker skin as this is the first sign of a pressure ulcer, especially on heels, hips, lower back and back of head. Contact the person’s GP (or district nurse if known to them) for a pressure care assessment so that appropriate information and equipment can be given.

Things to think about

  1. Apply alcohol-free lotion to soothe dry skin. Use a lip balm for dry lips and place a damp cloth over closed eyes to relieve dryness.
  2. If the inside of the mouth is dry give ice chips (if the person is conscious) or wipe the inside of their mouth with a damp cloth or cotton ball or a treated swab might help.
  3. Watch out for pressure ulcers. Turning the person side to back and to the side every few hours may help prevent pressure ulcers. Contact the person’s GP (or district nurse if known to them) for a pressure care assessment so that appropriate information and equipment can be given.  Ask if a special mattress or chair cushion might help.

Digestive problems

  • Nausea, vomiting, constipation and loss of appetite are common issues at the end of life. The causes and treatments for these symptoms are varied, so talk to a doctor or nurse right away. There are medicines that can control nausea or relieve constipation, a common side effect of strong pain medications or taking iron for anaemia.
  • It can be upsetting as a carer when the person doesn’t want to eat or is too tired and weak to eat, particularly if the person has previously enjoyed their food and you have enjoyed preparing food and eating with them. Although you may be concerned about keeping the person eating and drinking, it’s important to remember the priority is to keep the person comfortable. As death approaches the person may not want to eat and going without food and/or water is generally not painful.
  • Swallowing may also become a problem. It may be helpful for medication to be given in liquid form rather than tablet. You may find the person makes a conscious decision not to eat which can be part of the person’s acceptance that death is near.
  • Drinking is more important than eating. But you may find the person even stops drinking and this may be a further indication of the end of life approaching.
  • For further information on how to manage swallowing difficulties and guidance on mouth care. 
  • For details of what to expect when someone is approaching the end of their life
  • For further information on how to feed the person you care for

Things to think about

  1. If the person is very weak, help them with feeding if they are wanting food.
  2. To address loss of appetite, offer favourite foods in small amounts or try smaller meals offered more frequently. Tastes may also change, so that foods they once loved might be rejected. Whatever they fancy whenever they fancy is fine.
  3. Talk to the doctor, nurse or palliative care team about use of nutrient supplements to keep up calorie intake.
  4. Don’t force the person to eat as this may be adding to their discomfort. Similarly small sips of water can be given but again this should not be forced.
  5. Temperature
  6. People who are dying may not be able to tell you that they are too hot or too cold. So it’s important to look out for clues such as the person repeatedly trying to remove a blanket.  If cold they may be hunching their shoulders, pulling a blanket up or even shivering. 

Things to think about

  1. If the person appears to be hot take off the blanket and try a cool cloth on their head. Make sure there are no drafts.
  2. If the person appears cold raise the heat in the room and add another blanket. Avoid electric blankets and hot water bottles.

Falls, mobility and fatigue

  • Mobility and prevention of falls is key when providing care to a person with a terminal illness. Keeping the person you care for as mobile as possible for as long as possible can reduce incidence of pressure sores and infection.  A fall can also massively impact on the person’s confidence, may increase anxiety and reduce their quality of their last few months/weeks of life. 
  • It is common for people nearing the end of life to feel tired and have little or no energy so it’s important to keep activities simple. For example, a bedside commode can be used instead of walking to the bathroom. A shower stool can save a person’s energy, as can switching to a bed bath.
  • For more information on how to prevent falls.
  • Things to think about
  • Monitor the person’s mobility and if you are concerned about falls risk (near misses, unsteadiness, reduced confidence) encourage the person to seek further advice and support from GP, district nurse, physiotherapist/occupational therapist or Community Falls Prevention Team

Continence

  • Helping the person you care for to use the toilet, commode or bedpan might cause one or both of you to feel embarrassed or awkward. Many family carers feel it changes the nature of the relationship with their loved one. A GP or district nurse can advise on what is available locally to help with their personal care. Training and support should be available for when a family carer first helps the person to use the toilet.
  • The person’s district nurse or an Occupational Therapist can advise on equipment such as a raised toilet seat, bedpan or urinal, handrails near the toilet, mattress protectors and pads or a commode/commode screen for privacy.
  • It is not unusual for people approaching end of life to experience bladder problems, including needing to urinate more often, not being able to urinate, not have control over when to urinate, bladder spasms and urinary tract infections (UTI) which can affect any part of the urinary system including kidneys, ureters, bladder and urethra.   Common signs of a UTI are strong urge to urinate, cloudy/bloody urine, strong smell, pain and burning when passing urine, nausea/vomiting, muscle aches and pains and new or deteriorating confusion. A sudden change in behaviour is the best indication of a UTI in an older person.
  • Lots of illnesses and treatments can also cause bladder problems such as a neurological condition that may have damaged the bladder nerves, surgery or medications.
  • The person you care for may also require additional support and personal care due to bowel incontinence or they may have a stoma bag. Most people have a bowel movement more than three times a week and pass good textured faeces without straining.The colour of stools may vary but should not be too pale or very dark although colour may be affected by medication such as iron.   
  • For more information about how to help the person you care for use the toilet or commode
  • For information on how to help the person keep clean

In Surrey there is a specialist NHS continence service with specially trained continence nurses offering advice and guidance. For example they will provide free of charge two continence pads per day if the person you care for is incontinent. They also run incontinence clinics and provide a number you can call for advice.

Things to think about 

  1. Keep an eye out for any bladder changes including UTIs and speak to the doctor or nurse if you are concerned. Sometimes it might be necessary to insert a catheter and a district nurse can do this procedure at home. 
  2. Unless the person is struggling to swallow or the person is advised by the GP not to do so, help the person to keep fluid intake up – based on NHS England advice we should all be drinking six to eight glasses of fluid a day. The colour of urine can indicate dehydration however it is worth remembering that some foods and medicines can cause an unusual colour or darker. Monitor and seek advice if you have any concerns. For more information about Preventing/Managing UTIs, visit NHS.
  3. If there is a change in bowel habit or stools change texture or are very dark or very pale encourage the person to talk to their GP or nurse. If normal bowel habit is not occurring, that is they haven’t been for 2-3 days, speak to the person’s GP as constipation can be very painful and may well be the reason for no passing of urine.

Providing mental health and emotional support

  • Understandably the dying person may be mentally and emotionally distressed especially when they are cognitively alert near the end of life. 
  • They may also have very specific fears and concerns, for example worrying about being alone at the end or a fear of the unknown and leaving their loved ones behind. This fear can be made worse when family and friends do not know how to help or what to say and may even stop visiting adding to the person’s sense of isolation.  Sometimes doctors feel a sense of helplessness as they cannot cure the person and can seem to avoid the dying person. 

Things to think about

  1. If the person is highly anxious and depressed it is important to treat the emotional pain and suffering. Talk to their doctor about what can be offered. You might want to contact a counsellor, ideally one familiar with end-of-life issues. If the depression or anxiety is severe, medicine may help.
  2. Don’t forget that the simple act of physical contact—holding hands, a touch, or a gentle massage—can make a person feel connected to those they  love. It can be very soothing. 
  3. Create a comforting environment that is right for that person. If the person is very sociable then having lots of family and friends around them will be important when they are dying.  If they like peace and quiet then having just one or two people with them is more appropriate. If the person loves music then music at a low volume and soft lighting might be very soothing to them. 
  4. Just being with the person is often enough. It is not necessary to fill the time with talking – a quiet presence may be all that is needed.

Providing care to someone with challenging behaviour

  • You may find the person you care for is challenging in their behaviour.  ‘Challenging’ is often defined as when a person is putting themselves or those around them at risk, including yourself as their carer, or where their behaviour is going to lead to a poorer quality of life. It can also impact on their ability to join everyday activities. It can include aggression, self harm, destructive behaviour and disruptiveness.  
  • It is often seen in people who have a learning disability or a mental health problem such as dementia and it can affect the person’s ability to communicate.  

Things to think about

  1. As a carer try to understand why the person is behaving in the way they are.  For example they might feel anxious or bored or be in pain. They may be behaving in a certain way to get your attention. If this is the case then consider not responding directly to their behaviour  although you should not ignore them completely.
  2. Look out for the warning signs. This way you may be able to prevent behavioural outbursts.  For example the person you care for may feel anxious or agitated if in large groups, so you could arrange for them to be in small groups or have one to one support.
  3. See if it helps to distract the person or focus the person’s energies elsewhere and this can prevent the person displaying challenging behaviours.
  4. If their behaviour puts them or someone else at risk then intervene as calmly as possible.
  5. If you’re finding it hard to cope with the behaviour of the person you look after, go to the above websites for further information and ask your GP to refer you to a specialist.

Spiritual and cultural issues

  • The person you care for may have spiritual needs that are just as important as their physical needs. These may not be religious concerns as such but might include finding meaning in one’s life and ending disagreements with others. The person might find peace by resolving unsettled issues with friends or family. Visits from a social care worker or counsellor may help with this. 
  • However the person you care for may find comfort in their faith. Praying, talking with someone from one’s religious community (such as a minister, priest, rabbi, or imam), reading religious texts, or listening to religious music may bring comfort.
  • An outline of spiritual and religious practices relating to end of life care and different faiths.  

Things to think about

  1. Talk to the person about the importance of your relationship with them. If caring for a parent you may want to share how they have influenced the course of your life. If you are a grandchild you can let your grandparent know how much they have meant to you. If you are a friend you can talk about how you have valued years of support and friendship. Family and friends who can’t be present could send a recording of what they would like to say or a letter to be read out loud.
  2. Even if the person is unconscious, some doctors think it is possible for the person to still be able to hear. It is therefore never too late to share your good memories or feelings about the person.
  3. Always talk to the person who is dying and not about them to others when you go into the room. Always identify yourself when you go into the room. 
  4. Even if the person has been confused there may be times when they are lucid, although this does not mean they are getting any better. Use these times to talk with them about your good memories and feelings and even write down some of what they say. 
  5. If the person seems to be talking to someone who is not there avoid trying to interrupt or say they are imagining things as they need space to experience their own reality.

How to tell death is near

The signs of death approaching will be different for each person.  It is difficult to predict what may happen at the end of life, how long the final stage of dying will last or when death will actually happen.  Death may come quickly due to an unexpected event or the final dying process may happen slowly with the person you care for lingering.

The following signs are examples of what may happen to the person you care for and who is dying. Some may or may not happen, but it can be useful to know about them.  

Body changes:

  • very weak and unable to get out of bed
  • needing help with all personal care
  • loss of interest in food and may have little food or fluid intake for days
  • mouth becomes very dry and/or mucus collects at back of mouth
  • trouble taking medication, swallowing tablets etc
  • sudden movements of muscles, twitching or jerking (terminal restlessness caused by build-up of toxins in the body)
  • drooping lips
  • skin feels cool to touch and/or dry or damp
  • skin darkens or becomes blotchy
  • heart rate may become fast, faint or irregular
  • blood pressure gets lower
  • breathing gets faster or slows down or may have periods when not breathing for 10-30 seconds
  • vision becomes blurry and pupils may not change in size
  • trouble closing eyelids
  • hearing may decrease but the person can still hear you even if they cannot speak
  • urine becomes darker and/or urinary and bowel incontinence.

Changes in consciousness

  • dozing or sleeping for much of the day and hard to wake up
  • confused about time, place, or people
  • restless and pulling at bed clothes
  • talking about unrelated events or people
  • agitation, anxiety and fear
  • may have a short time when mentally clear, particularly after period of sleep

It is important to understand what to expect in a person’s last weeks or days and how you can practically care for them at this time. 

Final moments

It can sometimes appear that people choose the time to die, for example waiting for a close relative to arrive, or until a special date. But sometimes the person can die unexpectedly or alone. It’s not possible to explain why people die the moment they do.

In most cases the final moments for a person are very peaceful. Breathing becomes slower and slower with more irregular long pauses between each breath. Finally they will stop breathing altogether. 

  • Sometimes it is not always exactly clear when a person dies but you may notice that their face suddenly becomes relaxed and peaceful. 
  • There is no right or wrong way to feel in these final moments with the person.  You may find it a very spiritual experience or you may find it a very numbing experience as the essence of the person disappears.  You may feel grief stricken or it may feel it’s an anti-climax and try to carry on as if nothing has happened. You may go through a whole range of emotions in just minutes or hours.   

With the recent Covid 19 pandemic family members have not been able to be with their loved one in their final moments. This has led to health and social care staff exploring ways in which to use technology to tackle practical difficulties of saying goodbye to loved ones and grieving when family cannot be present in those final moments.  In the following video Dr Elaine Kasket from the British Psychological Society’s Covid-19 Bereavement Task Force talks about the difficulties of saying goodbye to loved ones and grieving during the Coronavirus pandemic, and the ways in which technology might be able to help. 

Things to think about

  1. Make the best use of the times when the person is awake to say your goodbyes.
  2. You may be upset if you are not with the person when they die –you may feel they haven’t chosen to die when you are there with them or you may feel you have let them down by not being there. However you will need to leave the room periodically for a break so perhaps say goodbye to them each time you leave just in case they die whilst you are not there.
  3. If you are alone during these last moments you may want to ask another member of the family or a friend to join you. Or there may be a faith leader that you would like to come and support you.

When it’s time to ask for help

One of the biggest challenges being a carer for someone with a terminal illness is knowing when to ask for help. There may be certain crossroads in your caring journey when you will ask yourself different questions about when is the right time to ask for help and where to go for it:

North East London NHS Foundation Trust, in partnership with UCL Partners, Care City and Basildon and Brentwood CCG, recently designed a free tool called ‘Significant Care’ to help carers spot the early signs of deterioration in the health of those they care for, and to improve decision-making about what comes next. The paper-based tool helps carers and families of older people detect the signs of deterioration; such as those related to skin, toilet habits, mobility and levels of confusion. Suitable for use in both care homes and when giving care at home, it also supports carers to take prompt action. 

Who should I ring if I am worried about the health of the person I care for?

If it is a medical emergency then call 999. This can include: loss of consciousness, an acute confused state, fits that aren’t stopping, chest pain, breathing difficulties, severe bleeding that won’t stop, severe allergic reaction.  Call 999 immediately if you think the person is having a heart attack or stroke as every second counts. If not a medical emergency and it is health surgery hours you should contact the person’s GP. If the person’s GP surgery is not open then ring 111 for out of hours health advice. You can also use the NHS 111 online website. 

What happens if there is a social care emergency out of hours for the person I care for?  

In this situation you can call the Emergency Duty Team (EDT) requesting help and support or an urgent assessment. It is an emergency social work service designed only for urgent situations which arise out of normal office hours and which cannot be left with an appropriate degree of safety until the next normal working day. It is worth noting that there are usually only 2-4 members of staff on duty and only 1 member of staff from 1 am to 9 am, so calls will be prioritised depending on the level of risk. Tel: 01483 517898 or email: edt.ssd@surreycc.gov.uk

When can I ask my local hospice for help?   

You may not want to call a hospice until the final days and weeks of caring for your loved one, however your local hospice can help you much earlier on by providing additional specialised nursing care, medications, medical equipment and supplies in the person’s own home that might help you. They can help improve the person’s quality of life by managing pain and the symptoms of their illness, but they can also give you emotional support and guidance. So if you haven’t already been put in touch with your local hospice by the person’s GP or district nurse think about making early contact.  

What if I feel I need urgent mental health support for either myself or the person I care for?  

If you are seeking urgent mental health support during evenings and weekends and you don’t know where to go you may be tempted to go to your local A & E but this isn’t always the best place as it is busy and isn’t staffed by mental health professionals. So the NHS and the local voluntary sector in Surrey have teamed up to create six Safe Havens which are specifically designed to support those in mental distress. These havens are staffed by mental health professionals and peer support workers and are able to address your symptoms or those of your loved one in a timely way and offer information and advice so you can both stay well at home. Safe Havens can support you as a carer to feel less isolated and give a place to come where you will be understood and know what you are going through