Approaching the end of life
What to expect during the last weeks or days of life
If you are caring for someone, or if you are thinking about what you would like to happen during the last weeks or days of your own life, it will help you to know what you can expect, so that you can prepare yourself and ensure you are able to have the best possible end of life. Understanding what you or the person you are caring for might expect can make the experience less daunting and more manageable, practically and emotionally.
No person is the same and end of life experiences will be vary greatly from person to person, however there are some common changes in the last weeks and days before someone’s death. It's good to turn to your GP as your key point of contact, as they will be responsible for coordinating your health care. They will also be the person who will be able to explain what you may expect and help you prepare for the best end of life possible for you and your loved ones.
There is a very reassuring talk which you may find helpful, given by Dr Kathryn Mannix, a palliative care consultant, who through her extensive experience discusses how dying is not the experience many of us expect it to be. When death is expected and managed, it is usually a very natural and peaceful experience.
You may also want to visit the in an emergency section on this site, which provides further detailed information about end of life care.
Your end of life decisions
It is always easier if a ReSPECT form or an advance care plan has been put in place, which will detail how and where the person who is approaching end of life would like to be looked after and what should happen when they are no longer able to make their own decisions. For more detailed information please go to the preparing section of this website. Although care providers would always like to support any wishes that are stated within an advance care plan it is important to realise that this is not always possible and that plans can or may have to change.
Your rights to refuse treatment during end of life
You can choose to refuse treatment in the last stages of life. Refusing treatment is referred to as an advance decision to refuse treatment (ADRT) or previously a living will. It is important that this specifies which treatments are refused and when.
Many people now choose to complete a ReSPECT form. This is short for "Recommended Summary Plan for Emergency Care and Treatment" (emergency end of life treatment). This form is completed in partnership with your GP or with hospital doctors and enables you to record your wishes concerning emergency care and treatment. This form has recently been widely adopted across the health service; it covers DNAR (do not attempt resuscitation) wishes and whether you would prioritise your quality of life over the quantity of life and vice versa.
Click here for more information about the ReSPECT form. You can print off a PDF version here. If you are admitted to hospital it is important to ensure you take a copy of the signed and completed ReSPECT form with you.
For more information about the various documents you can put in place to confirm your treatment preferences during end of life, please visit the preparing section of this web site. You can also view the advance care planning section on: the Marie Curie website or talk to a Marie Curie adviser directly on 0800 0902 309.
Choosing where you wish to die
Where you would like to be cared for in the last days is a complex decision to make, especially as your care needs may change quite significantly over time. It is also a very personal choice, depending on how you want to weigh up all your individual needs and preferences (including possible pain management, comfort, dignity, being close to loved ones or being in a familiar home environment) versus a hospital or hospice where you can receive around the clock care.
If you have a preference it is advisable to ensure your GP is aware and that this is detailed on your ReSPECT form, so all health care professionals can be made aware of your wishes.
Many people prefer to be cared for at home, if at all possible, but it is important that you think through what care is required and what care can realistically be given at home, as well as how loved ones may or may not be able to cope with providing support at home.
You can choose to go to a hospice which provide specialist palliative care. The advantage of a hospice is that you will be able to receive 24 hour care, but in a much friendlier and more homely environment than a hospital. Many hospices provide care and support at home.
If you have been living in a care home, you can chose to remain there. Please use the following links to find contact details for hospices and care homes that provide palliative care in Leicester, Leicestershire and Rutland.
The majority of hospitals are able to provide palliative and end of life care. There are usually care teams available that are very experienced and specifically dedicated to end of life care, who will be able to provide both the medical and emotional support you need as you approach death. This may be a consideration if you have more complex medical needs or if you require 24 hour medical assistance with pain management.
If you are going to be discharged from hospital and choose to die at home, in a hospice, or care home, the palliative team in the hospital will be able to ensure that the necessary referrals are made for you. Special Patient Notes will also be made for you. Special Patient Notes are recorded online by GPs to ensure the right information is made available to the right people. This is especially important if at any time you need out of hours services and are helped by a medical professional who has no prior knowledge of your situation and needs.
Before you are discharged from hospital the healthcare professionals will ensure that all the key information about your condition and care requirements is recorded in a discharge letter or discharge plan. This is so information can be made available to any healthcare professionals who will support you after you leave the hospital, e.g. your GP or district nurse. You can get a copy of this information to take home with you. If some one is caring for you at home it is sensible to ensure that they have access to a copy of your discharge letter.
What are the key considerations if you would like to be cared for at home?
It is always wise to discuss with your GP or district nurse what to expect and what support you might need at the end of life, so that you can prepare yourself and your loved ones and understand what nursing care, pain relief and personal care you might need.
In some areas Marie Curie may be able to provide a nurse in your home, often overnight. This can be organised through your GP. For more information for you and for the person who will be looking after you at home, you can call the Marie Curie Support line on 0800 090 2309.
How much will you be able to do yourself and how will your family and loved ones be affected?
You may be able to do a lot for yourself, or this may be more difficult. This is something you should discuss carefully with your loved ones and your GP or district nurse. Try to consider that there will be tasks your family or loved ones are happy to do and some that they prefer to leave to a health or social care professional. Providing personal care to you may be uncomfortable to them as they may want to keep the relationship they have with you the same.
Everyone is different and it is often good to get some additional help to achieve the balance you and your loved ones feel comfortable with. To find out more about caring for someone, including providing personal care, you can visit mariecurie.org.uk/carers or call the Marie Curie Support Line on T. 0800 090 2309.
If you choose to have your last days at home, your family or people living with you will find it easier to help you if they know what to expect. If children or teenagers are involved, try to consider how they will react both before and after your death. To talk this through, you can contact national support organisations such as Macmillan and Sue Ryder.
How to support children and young people
Local support organisations can also be a great help, by enabling you to discuss everything with your children. They will also be able to offer support to your children after your death. You can follow the link for Coping with grief - children to find a list of bereavement support organisations for children and young adults.
Other useful information
What medical and health care and support is available to you if you are at home?
It is important to know that medical care will not be available to you full time when you are at home. Your GP will oversee all your medical requirements and prescribe any medication necessary. Your GP will also be able to arrange for other health care professionals and care providers to visit you if needed, so it is advisable to speak with your GP if you have any questions about care at home.
In most cases, the district nurse or community nurse will also take care of some of your health and care needs, including giving injections, providing bowel and bladder care, and giving advice on food and drink. The district nurse is supported by a team of healthcare assistants or other professional carers who may offer help with personal care tasks. This may be important to you and could help your family or loved ones to be there for emotional support and company.
The palliative care nurse will advise the nursing team on how to manage any pain and other symptoms. If you feel worried or upset the palliative care nurse can talk you through what is happening and help you to stay comfortable and calm.
To ensure you can cope at home an occupational therapist will be able to visit you to organise any equipment that can make you more comfortable, such as a hospital bed or a commode.
If you think you or your family may need some help to understand the different care services available to you, a social worker will be able to help you. They can look to provide personal care and support.
For more information to help family members who would like to provide care at home, but have no previous experience with caring, you can visit the caring page of this website, which focusses on day to day, practical issues, such as how to safely lift someone out of a chair and how to help someone on the toilet.
You can use the following links for more information on services available Leicestershire and Rutland:
Leicestershire - www.leicestershire.gov.uk/adult-social-care-and-health
Age UK Leicestershire and Rutland - www.ageuk.org.uk/leics/
Integrated palliative care nursing team - www.bettercareleicester.nhs.uk/better-care-together-home/the-bct-plan/end-of-life/home-based-ipct/
Rutland Citizens Advice - www.rutlandcab.org.uk
What about the cost of my care?
Medical care provided by the NHS is free of charge, including care in hospices and hospitals and at home. However, you may be asked to pay towards some of the costs of your personal or social care, including getting care at home or staying in a care home or nursing home. This can depend on the care needed, where you live and how much savings or income you have. You can speak to your GP, nurse or to social care services about what care is available.
If someone has to apply for benefits on someone else's behalf, they will require a DS1500 form (if the person is eligible for benefits such as attendance allowance, or disability living allowance). For more information, please visit the preparing page on this site.
Where can I find spiritual support to offer me guidance?
There are many organisation that provide spiritual support to help people during end of life, no matter what your spiritual beliefs are. Spirituality means very different things to different people. Religion and faith might be part of someone’s spirituality, but spirituality isn’t always religious. Please follow the following links for Leicester and Leicestershire and Rutland to find a contact that meets your needs.
The British Islamic Medical Association , who aim to provide a better understanding of the principles of Islam amongst health care workers provide a very informative video to help explain the difficulties surrounding palliative care.
What is likely to happen in the last few days?
No end of life is the same, so it is not possible to predict exactly what might happen. As the body changes, behaviour and emotions can also change, causing some people to become confused or restless or delirious. The GP or district nurse may suggest medication to ensure that the person who is approaching death can remain calm and relaxed. If you are anxious about what might happen, you can talk to your GP or to a palliative care nurse.
Putting arrangements in place to ensure you have expressed your wishes for end of life care will give you a greater sense of control and should help you to achieve the best end of life possible. For more information about the arrangements you can put in place for end of life, please visit the preparing page on this website.
Below you will find the common changes that often happen as people approach death. If you are caring for someone who is dying, there will be a number of things you can do to make them more comfortable. It will also help for both of you to know what could happen.
Changes in appetite
Some people no longer wish to eat or drink. This can be because eating or drinking has become difficult and too much effort. It can also be because they no longer feel they wish to eat or drink. This is not unusual and they should never be forced to. It is always possible to discuss whether extra fluids or nutrition are needed with the district nurse or GP.
Whilst it may be distressing for loved ones to think that their loved one is feeling hunger, it is important to remember that the person going through end of life is often unaware of this. Artificial feeding or fluids can sometimes prolong the inevitable, which is not always in the best interests of the person or part of their wishes. This is a difficult issue and something that is best to discuss with the GP or health care provider.
What you can do to help if someone has a dry mouth
When it becomes more difficult for someone to swallow, you can give support by offering a straw or teaspoon. You can also moisten the mouth with a damp sponge or place small ice chips inside the mouth. Suitable sponges are available at most chemists. It is easy to get dehydrated lips so you may be able to give further comfort by applying lip balm.
Loss of bowel or bladder control
Close to the end of life many people can lose control of their bladder or bowels as their muscles relax. If this happens, the nursing team can help to make sure that the person is made comfortable and that their dignity is maintained. You can ask the nursing team what equipment is available to help, such as incontinence pads or a catheter (a tube which drains urine from the bladder). Don't be alarmed if you find that their urine has become much darker in colour. This happens when people drink less and the urine becomes more concentrated.
Changes in breathing
As a person approaches their end of life, their body becomes less active and they require less oxygen. You may find that their breathing becomes shallower and there may also be longer pauses between their breaths.
Sometimes the person's breathing becomes more noisy, which some people refer to as the 'death rattle'. This happens when the person can no longer swallow the normal fluids in their chest or throat. This does not mean the person is in distress. You may be able to provide comfort by changing their position. If the person is not too disturbed by being moved, it may be more comfortable for them to lie on their side. If you are concerned, the GP or district nurse should be able to help with medication to reduce the fluids on their chest or throat.
Sleeping and possible loss of consciousness
The person may become much sleepier and could appear drowsy when they are awake. This is quite normal and not something to be alarmed about. It is not unusual for someone who is dying to have less energy to engage in conversation, but it does not mean they can't hear you. You should not feel that you have to stop communicating, as this can still be a great comfort.
The person may become more restless or agitated
This can happen in the last few days of life, though the person may become more peaceful again before they die. Sometimes people become quite confused and they may even hallucinate. This can be alarming to witness, particularly when the person sees people that are not actually there. If the person no longer recognises you, it can be very upsetting, but it is worth remembering that they don't feel any different about you. What often happens is that people drift in and out of consciousness, which causes them to be confused.
If a person become agitated and restless there may be physical reason for this, such as difficulty with bowel movements, passing urine or they may be in pain. You can always talk to the GP or district nurse about this to ensure the person can be made as comfortable as possible. If necessary, the GP or health care provider may prescribe medication to ease restlessness and address any pain. You can also provide comfort by talking calmly and clearly and by reminding the person that you are there. If the person communicated but gets something wrong, try not to correct them - it doesn't matter. What matters is that you can help the person to be calm and comfortable.
Changes in temperature and colour
The person's skin may feel cold to the touch and may become paler, slightly mottled or blue. This is due to changes in their circulation. Sometimes you can also see some swelling in their hands or other parts of their body. Don't be alarmed. These are all quite normal changes and should not cause the person any discomfort. Sometimes a gentle massage can be helpful, because the muscles in these areas wont relax as easily as they used to. The nursing team will be able to show you how to do this.