Thinking about the last days of life

Care in the last days of life - Information for service users, families and carers

This page provides information, advice and guidance for people in the last days of life, their family and carers. If you would like to discuss anything included in this booklet in more detail please speak with the doctor or nurse responsible for your care.

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How can I be involved in planning my care?

Your preferences and wishes will be discussed and a plan of care will be agreed by you and the doctors and nurses caring for you. This is known as a care plan. Your care plan will be discussed with your family unless you have told the doctors and nurses not to. You have the opportunity to discuss your wishes and preferences about your care and treatment at any stage in your life. You might find it helpful to put these into writing as a personalised plan. Making a personalised plan is your choice and you should not feel pressured or forced into doing it if you do not want to. However, writing down your preferences means that this can be shared amongst those caring for you and saves you the need to repeatedly explain your wishes.

If you feel too unwell to actively participate in discussions about your care in the future, your plan would make it easier for those caring for you to take your views into account when decisions are being made. You should review the plan from time to time, so that it still represents your views if they change over time. Your plan can name individuals that you would like your doctors, nurses and other professionals to consult if you are unable to make your own decision. Unless you have appointed someone to be your lasting power of attorney for health and welfare, these individuals cannot legally make decisions on your behalf. However, they should receive explanations and be involved in discussions about your care (unless you have previously stated otherwise). A specific treatment can be legally refused (at the time, or in advance by you) but specific treatments cannot be demanded. To discuss this further please talk to your nurse or doctor.

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How are decisions about my care and treatment made?

You should have a senior doctor and registered nurse who are responsible for your care and ensuring that you are involved in any decisions about your care wherever possible. They are also responsible for making sure that any decisions about your care are made in a timely manner. If you are in a hospital or hospice, the senior doctor will be called a ‘named consultant’. When he/she is not available, this responsibility should be delegated to another senior doctor so decisions are not delayed. If you are at home or in a care home, the senior doctor will be your GP. If you wish to contact your senior doctor outside of their normal working hours, you will be put in touch with your GP’s out of hours service which can be accessed by contacting your usual GP number. If your condition changes, you will be assessed by your senior doctor. Their treatment decisions will consider things such as; how likely you are to benefit from treatment, what side effects the treatment might cause and if the treatment may be too much for you cope with. You should be involved in helping to make these decisions unless you do not wish to be or are not able to do so at the time. In this case, your senior doctor and registered nurse will act in your best interests. They will take into account the treatment considerations described above as well as any wishes you have previously expressed and what your family and carers would know to be your preference.

Unless you have stated otherwise, your family and carers will be given the opportunity to participate in discussions about what should happen next, even though they cannot legally give consent on your behalf. If you have nominated one of them to be your lasting power of attorney for health and welfare decisions, that person will have a greater role in making decisions about your care. Sometimes health professionals and your family and carers may have a difference in opinion about what choice to make. In this situation, it is helpful for both parties to remember that they all usually want what is best for you; they may simply disagree on how best to achieve this. They should discuss this openly and if they still can’t agree sometimes a second opinion may be needed or in some cases an independent advocate will help in the decision making.

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When will my needs be assessed?

You will be assessed regularly by the team looking after you. How often these assessments take place will depend on where you are at the time – at a hospital, hospice, care home or your home. Health professionals will assess the management of your medication and how this is helping your symptoms on a daily basis at the least. You will also be regularly assessed to make sure you are comfortable – this will be at least every four hours in a hospital or a care home. At home although the nurses and social care staff will visit regularly it is likely that your family and carers will be monitoring your comfort level. The nurses will explain how to do this and also when and how to contact the professionals if help is needed. If you would like more information about this please ask your doctor or nurse.

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How will my symptoms be managed?

If you need medicines to help with your symptoms (such as pain or sickness) you should receive these promptly. If you are able and wish to, your medication will be discussed with you. This should be prescribed and given by the doctors and nurses when needed. You will be given the smallest dose that works for your symptoms and one which will only last as long as you need it. Your doctors and nurses will review how the medicines work for you and will make adjustments when needed. If you need a syringe driver (a small machine that gives medicines continuously under the skin) your doctor or nurse will fully discuss this with you and explain its purpose. They should also explain your medication to your family and friends. However, it is important that your doctors and nurses act in your best interests and promote your comfort at all times therefore, if your family or carer cannot be contacted they will go ahead and give you the medication you need, unless you have previously stated otherwise. Additional medicine prescriptions for common symptoms may be written in advance to avoid delay. If you are at home, these medicines may be pre-ordered and kept in your home so that they are available if you should need them. If you would like more information about this please ask your doctor or nurse.

Will I be able to eat and drink?

If you are able to swallow safely and wish to eat or drink, you will be encouraged and helped to do so. In the last hours or days of life, people often do not have a desire or ability to eat or drink but need to wet their mouths to prevent dryness. The nurses and carers will provide mouth care and show your family how to do this to help to keep you comfortable. A decision about whether to give you fluid or food by a drip or tube will be considered by the doctors and nurses who are looking after you. They will again consider what is best for your comfort and will be informed by your own preferences when making decisions. They will share any decisions with you (if they are able to do so) and/or consult with your family and carers.

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How will my care be co-ordinated?

There should be regular communication between your healthcare professionals, you and your family and carers. When there is a change in your condition or there is progress to report on how you are responding to any treatment or care, professionals should discuss this with you and, with your permission, your family and carers. Healthcare professionals are bound by their code of confidentiality and will only discuss your health and care information with you and anyone else that you would like to be involved. When you are very ill particularly in the last days of life, you may not be able give your permission. Professionals recognise that your family and carers will want to know about your care, so it is helpful if you are able to tell them in advance which of your family and carers you would like to be involved in these discussions. With your permission there should be clear arrangements about sharing key information about your care, treatment and preferences with other professionals and family members or carers who may be involved in your care. If you are not sure whether you want your information to be shared, you can discuss this with your doctor or nurse. You and your family and carers will be told how to get help urgently if you need it. This includes who to ring, what numbers to use and what key information you should provide so you can receive the most suitable help.

How will my family and carers be supported?

Your family and carers will have their own needs assessed and addressed. If the professionals looking after you are unable to help them, they will give them information about how to seek help for themselves.

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