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Decisions about your care at the end of life

Coping with cancer

This page is about the decisions you and your family and friends may need to make about your care in the last few weeks of life. There is information about

 

Advance care planning

Your doctors and nurses may talk to you about advance care planning. This is a process where you talk about how you would like to be cared for if you become too ill to make decisions or to communicate your wishes in the future. The doctor or nurse will write down your wishes. You can let them know if your views or wishes change. Your family and friends can be included in the discussions if you like. There is more information about advance care planning in this section of our website.

You can also write requests about your care in a living will.  We have a section which gives information about living wills.  Living wills are sometimes called advanced directives. Your doctor or nurse may ask you to make decisions about some of the issues below.

 

Changes in eating towards the end of life

When someone is dying, they gradually lose their appetite and don't want to eat. This is part of the illness. You may only be able to eat small amounts and feel full very quickly. You may also find that you do not have the energy to eat. Gradually, as your body begins to shut down, it can’t digest food and even small amounts of food may make you feel uncomfortably full or sick. Or eating may give you stomach pain or diarrhoea.

Your relatives and friends may have trouble understanding that you can’t eat. They may get very upset and try hard to make you eat. This is a common reaction, even though they know eating won’t help. Your family may feel that things would be OK if you ate. Feeding you can help them feel as if they are doing something positive.

It can be difficult if the people around you keep offering food you can’t eat. And it may cause bad feeling between you just when you both need support and understanding. It is important that your friends and family recognise that the best thing they can do is just be there for you. If you feel like eating, that's great. But if you don't, they shouldn’t try to get you to eat.

As one doctor explains, “Lack of appetite isn't painful, but eating can be if your body can’t cope with food”. Knowing this may help your friends and family accept that you don’t need to eat.

Some relatives may want you to have liquid food through a tube into your stomach or veins. But people who are in the final months or weeks of life don’t necessarily live longer or get stronger if they are fed in this way. People stop eating because of the way the cancer is affecting their body. So liquid feeding can cause complications, which may make you uncomfortable. People having artificial feeding need close monitoring with blood tests. The main aim is to keep the dying person comfortable. Doing blood tests and giving feeds can cause distress and discomfort. It may help to know that people don't get stronger if they are given liquid feeds.

 

Drinking

People with cancer nearing the very end of their life can lose interest in drinking as well as eating. Although they may be dehydrated technically, they don't feel thirsty. This doesn’t make them uncomfortable, as long as their mouth and lips are cleaned and kept moist regularly.

If you do feel thirsty and uncomfortable but can’t drink, your doctor may suggest giving you fluid through a drip (rehydration). Or as an injection just under the skin surface (subcutaneously). This is called parenteral hydration. You have this fluid to relieve the symptoms of dehydration - it is not to cure your illness or prolong life.

Your doctors will ask you and your relatives to agree to having the fluids and will explain what it involves. Having injections and drips can be uncomfortable. If your doctor thinks that giving fluids will cause more distress than relief, they will let you know.

Research shows that many people are actually more comfortable when their bodies don’t have to deal with too much fluid. Sucking on ice chips or having sips of cold water can help to relieve symptoms of thirst or a dry mouth. If you can’t suck or drink, your carers can regularly clean and moisten your mouth and lips with swabs and lip balm.

When someone is close to dying, they are often not able or willing to drink at all. At this point, they are only likely to live for a few days at most.

 

Resuscitation

When you have a terminal illness, your doctors may explain that they won't try to restart your heart and lungs if they stop working. Trying to start them again is called cardiopulmonary resuscitation (CPR). Of course, it may be very upsetting for you and your family to hear this. But they are saying this because trying to start your heart and lungs again won't work if you are very ill with advanced cancer. Your doctors will write this in your medical notes, so that everyone looking after you is aware that the decision has been made.

You can discuss your views about CPR with your healthcare team, and tell them whether or not you want them to try CPR. The doctors will take your wishes into account. You have the right to refuse CPR. But your healthcare team may think that CPR is unlikely to be successful and it is not appropriate. In this situation you cannot insist that the team do CPR, and the healthcare team can make the decision not to try CPR. If you want to discuss this decision further, you can ask for a second opinion with a different doctor.

The Resuscitation Council (UK) website has detailed information about decisions about resuscitation and your rights. They have guidelines produced by the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing called Decisions Relating to Cardiopulmonary Resuscitation.

 

If you get an infection

If you are very ill and nearing the last few weeks of your life, you may get an infection. You may want to talk to your doctor and loved ones about whether or not you want to take antibiotics to treat an infection, if you get one. Your doctor can note your wishes in your medical notes. If you want to change your mind later, you can.

 

Refusing treatment and care

It can sometimes be very difficult to know what care and treatment to have when you are near the end of life. There are many medicines that can help to control symptoms and keep you comfortable. Your doctors and specialist nurses can advise you on the best medicines for your situation.

Some people may feel so tired and weak that they don’t want to have medicines that could extend their life. An example of this is someone who gets a severe infection. They may choose not to have antibiotics, even if they know that without them they will die very soon. In the UK, as an adult you can legally refuse medical care and treatment if you do not want to have it. Doctors can only give you treatment and medicines with your permission. They should explain what will happen if you refuse the medicines, and will support you if you decide that you don't want the treatment.

It can sometimes be very hard for your family and friends to accept that you don’t want any further treatment. If this is a problem for you, you could ask your doctor or nurse to talk to your family and explain how you feel.

It is important to remember that most symptoms, especially pain, can usually be treated to help you feel comfortable. Make sure that you talk to your medical team about any physical or emotional symptoms that you have. Find out what treatment is available. You may feel differently if you get relief from your pain and other symptoms. There is detailed information about controlling symptoms in our section about managing symptoms in the final weeks of life.

 

Donating your body or organs to research

Not everyone feels able to tell their friends or family that they want to donate their body to research and that is fine. It is very much a personal choice. It may not be an easy decision and discussing it may make you and your loved ones feel very upset, even if it is something that you would like to do. But if you would like to donate organs for medical research, do talk to your next of kin and medical team. You may be able to donate the corneas from your eyes, tendons, heart valves, or ligaments for transplant. You may not be able to donate other body organs if they are affected by your cancer. There is detailed information about donating body parts for transplants and medical research in our coping practically when someone dies section and we have a question about donating organs. Your own doctor or specialist nurse can also answer your questions.

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Updated: 6 March 2014