What kind of care can a dying person expect to receive?
Dying people have a right to the same high quality of care as people who have illnesses that are curable.
The NHS is intended to be there to support us "when we cannot fully recover, to stay as well as we can to the end of our lives" (a quote from the NHS Constitution).
There are likely to be lots of different people involved in the person's care. Some of these will be NHS health and care staff, whilst others may be from separate organisations like social care agencies, hospices, or other charities.
When somebody is at home, often the people most involved in their care will be their family, friends and others who are close to them. Their GP has overall responsibility and district or community nurses are usually involved.
There are five important priorities for the care and support that dying people and their carers can expect. They apply wherever the dying person is being cared for - whether this is at home, in a hospice or care home, or in hospital.
1. The person's situation must be recognised, and reviewed regularly.
The person must be seen by a doctor if their condition gets worse unexpectedly. The doctor must judge whether anything can be done to improve the person's condition. If it can, and the person wants such attempts to be made, they must make sure that this is done quickly.
When the doctor believes that the person will die very soon, they must communicate this to the person if appropriate, as well as anyone that the person has said is important to them. This is likely to include you.
It is important to remember that the doctor may not be able to be sure that the person will die very soon, and they cannot know exactly when this will happen, but they must judge the situation to the best of their ability and communicate this judgement.
2. There should be sensitive communication between the dying person, those close to them, and the staff involved in their care.
The staff involved in the person's care must make time to talk to them, and to you. You can expect them to be open and honest, and clear in what they say.
Some members of staff find it difficult to be open and honest when talking about the care of dying people. If this happens, you could help them by saying what it is you already know and what else you want to know now.
Try asking specific questions that are on your mind. For example: "I'd like to know if my wife is going to be in more pain, and if there's anything you can do to reduce that."
3. The dying person and those important to them should be involved in the decisions about how they are treated and cared for, to the extent that the dying person wants.
Staff who are caring for the dying person should find out what the person wants, as far as possible, when it comes to their treatment and their care. For example, they may have written down their wishes ahead of time (sometimes called a 'living will' or 'advance statement').
There may be a document called an Advance Decision to Refuse Treatment (ADRT), a legally-binding document made in advance to say what treatments the person does not want. Hopefully the question of whether to re-start the heart once it has stopped (resuscitation) will have been discussed, and a form will have been completed to stop this from happening.
This is often called Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR).
Staff should also find out who the person wants to be involved in decisions about their care and to what extent. They may want you as their carer, for instance, to help decide about day-to-day things, like their food and drink, and/or their treatment.
The doctor responsible for the person's care must make sure these wishes are noted. If he or she decides that the person is not mentally capable of making such a decision at the time, a decision must be taken in their best interests - consulting people that the dying person has identified as important to them and other members of the care team.
If a person has an advance statement in place, this should also be consulted to make a decision which takes into account the wishes and preferences they previously stated.
Staff must make it clear to you whether they need you to help make a decision about the person's care, or are simply informing you of the situation.
If the person is not able to make or express a decision for themselves, and has identified you in an official 'Lasting Power of Attorney' (LPA) document, you will be able to make most decisions which are in the best interests on their behalf (this is an LPA for health decisions - which is separate from the LPA they may have completed for financial decisions).
They will need to have made this arrangement whilst they still have mental capacity to do so (please note the processes and terminology used in Scotland and Northern Ireland are different, you can find out more information about these by visiting the gov.uk website.
If there is no LPA, you can still expect that staff will discuss decisions with you and use your views to help inform the decision, but they themselves will carry the responsibility for making the decision in the best interests of the person. In that situation, you will not be responsible for making the decision.
4. The needs of the person's family and those important to them should also be met - as far as possible.
It is important not to forget about your own needs. Staff should ask you about these, and try to find ways of addressing these needs if possible. You should be able to tell staff how you are - you may, for example, be feeling sad or tired.
Staff should listen to you and let you know where you can access support, or tell you about things that might make it easier for you. This may include information about how you can get bereavement support for you and others (including children) before and after the person has died.
If you are having emotional or psychological difficulties, you may be able to find a support group for carers or family members. You could also ask the doctor (or your own GP) or nurse about counselling or other forms of support that may be available if you think you would find this helpful.
Your local hospice may offer care support, practical advice and bereavement care even if they are not directly involved in caring for the dying person. If you are having difficulty looking after dependents or other family members, you may want to talk to your doctor or nurse, who may arrange for you to speak to a social worker.
If the person is dying in hospital, you may want to request a side room to make it easier for you to stay overnight.
5. An individualised plan of care should be agreed and delivered with compassion
An individualised plan should be made (and regularly reviewed) for the care of the dying person. The plan should be consistent with the person's wishes, as far as this is possible.
The plan must pay attention to all of the needs they have and the choices they have expressed.
How they are feeling, physically
This includes control of symptoms, including eating and drinking:
- The dying person has a right to food and drink, if they would like this;
- They may decide not to have it, as they may not feel like eating or drinking, or because they are struggling to swallow;
- If the person wishes and would benefit from other ways of receiving food and fluids, this can be discussed with the staff who are caring for them;
- However, these are not usually considered when a person is in the very final stages of life, as they body does not require food or extra fluid at this time. You could also try these suggestions for moistening the mouth.
If the person is being cared for at home, their GP will be responsible for prescribing their medication. The GP can also advise if there are other ways of giving the person alternative fluids safely if there is a real need.
It is usually helpful to have emergency medications in the house to help with symptoms in the final days. These are often called 'Just in Case' medications and your GP can prescribe these.
How they are feeling, emotionally
- The person's mood or feelings may be affected by their condition;
- They may feel anxious or depressed, for instance, or become angry or upset. They may struggle to come to terms with their condition, or the reality that they are dying;
- Talking to you, or having you talk to them, may be comforting;
- If, for any reason, this is difficult for you or the person you are caring for, or the person needs further support, their doctor or nurse can help to ensure they receive support.
How they are making sense of the situation
- The person may be asking difficult questions about meaning, belief and faith, and may need support or comfort - whether they would consider themselves to be religious or not. They may be asking questions about the meaning of life or past events, or what is going to happen after they die;
- Many hospitals, hospices and care homes have someone responsible for making sure people's spiritual needs are met. In some places there may be a chaplain or a spiritual care co-ordinator. Whoever is in either of these roles must be available to anyone who is being cared for, whether they have a religious belief or not;
- The person may have specific needs based on their culture and/or their religion, when it comes to their care in the last days of life. These may be about, for example, how they are cared for or how they would like their body to be cared for when they die;
- These specific needs (if the person has any) should be put into their individual care plan, and should be communicated to care staff as early as possible. Staff should attempt to meet these needs as far as they can.
Plans often also include information about where the person would prefer to die - for example at home - or where they would not want to be. As far as possible, their wishes shoud be met.
However, sometimes things change unexpectedly and make it impossible to fulfil the person's wishes, or mean that it would be more appropriate to their needs not to do so. For instance, they may have said that they would like to die at home, but their needs could become so complex that a hospice or hospital would be better able to meet them.
This is sometimes inevitable and it is important to try not to feel guilty - the most important thing is that the person is cared for well and with compassion.
It is also important to remember that the person's wishes may change, especially as they become more unwell. This, again, is normal for people in the last stages of life.
This can be upsetting, but you and the person should be communicated with as much as possible in any situation like this to explain why it might be necessary or more beneficial to do something different to what the person had said they wanted.
I’d like to know more
The organisations and resources listed below can help you find out more about planning for end of life and hospice and palliative care.
Dying Matters aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. They present useful information on subjects including making plans, writing wills, bereavement, talking to children about death and avoiding misconceptions about dying. All the leaflets are freely available to download and print from their website.
Care for children and young people
Together for Short Lives is a UK-wide charity that speaks out for all children and young people who are expected to have short lives. The Together for Short Lives Charter sets out what families should expect to receive from their local children’s palliative care services in terms of information and support.