Lymphoma and the end of life

Transcription

1 Produced 2010 Next revision due 2012 Lymphoma and the end of life Introduction Despite improvements in treatment, many people with lymphoma will not be cured. Death and dying are things that people are often reluctant to discuss. You and your family might find it difficult and distressing to talk about what is ahead. But having these conversations, if and when you want to, might make it easier for you and those you care for to cope. You might feel more at ease if you make practical preparations. You can create an opportunity to let those close to you know your choices and preferences about your care. Finding out about what to expect might be some reassurance. Your medical and nursing specialists should always be available to talk to about your individual situation. You should have the opportunity to talk about your care and what you might expect. You should feel able to ask questions, even if you find the subject difficult. This article has been written for people who want to know more about what to expect of the end of life. It discusses what may happen to your body when you have advanced lymphoma and the changes that may happen in the final weeks and days of life. It also discusses common emotional experiences faced by those with terminal illness. This information may be distressing to some people. It is important to emphasise that you will have support to help you cope with the changes described here. Our article about palliative care provides more information about this. Everyone is different and you may not experience all of the changes discussed below. People who die of lymphoma will usually end life peacefully and comfortably. The Lymphoma Association has produced information about different aspects of the end of life. The following documents are also available: Lymphoma and palliative care services Making plans for the end of life What to do when someone dies For copies of these documents, please telephone our helpline. 1

2 Deciding to end active treatment In the 21st century, with increasingly sophisticated medical treatments and media coverage of miracle cures, we are encouraged to believe that anything is possible. It may be hard to accept that your lymphoma cannot be cured. Yet in spite of improvements in cancer treatment, it still has many limitations. Unfortunately for some people their disease does not respond to treatment, or their disease does not stay in remission. People in this situation will reach the point at which curative treatment stops and palliative treatment begins. In other words, a decision will be made to stop trying to cure the disease and instead to give you as good a quality of life as possible for the time you have left. This decision involves balancing up the pros and cons of continuing curative treatment. You and your medical team will need to consider lots of issues, including the following: Is more treatment likely to work? The likelihood of success tends to lessen each time you relapse. Your lymphoma cells are likely to become more resistant to available therapy. Remissions may be of increasingly short duration. You and your doctors will need to consider whether more aggressive treatment is likely to have any chance of success. What are the risks of further active treatment? Attempting to control your disease often means using more and more toxic treatments that may mean significant risk to your health. Some of these risks might be life threatening, especially if you are frail or if you have other health problems. The risks of treatment become greater and the benefits become more questionable. You and your doctors will need to ask whether any possible benefit is worth the risk. What about your quality of life? Severe side effects can make you very ill and unable to enjoy the things that matter. For many people, quality of life is more important if there is limited time left. Quality of life is an important consideration for many people faced with a decision about further curative treatment. Quality of life is a very individual concept and will mean different things to different people. So there are likely to be many other questions to ask when reaching this decision. Are there any important events coming up in your life that you would like to be as fit as possible for? 2

3 People often make plans based on what is coming up in the near future and what treatments or support will give them the best chance of feeling well for these occasions. What is most important to you? What are your feelings and expectations? Some people find this decision far easier than others. For some, quality of life is the most important thing and they may feel that the time has come to stop fighting. For others, it is very important to take every opportunity to fight their illness, even if it has a small chance of success or a negative impact on quality of life. This is a decision to be made with the advice and support of your medical team and those close to you. Be sure that you understand what is happening and that you understand the reasons for the advice you are given. Make sure that your medical team understands what is important to you. Ask questions. If you don t understand, ask if the answers can be put another way. Talk about this with those close to you. Share your thoughts about what is most important to you. Family and friends may find it hard to accept that you can t be cured. Their expectations may be different to yours. By keeping them informed, you can help to avoid misunderstandings and help them to agree that the best decision is made. It is likely that loved ones will be invited to talk to your doctor with you, as long as you are happy with that. How long do I have? Your doctor might be able to give you some idea of how much time you can expect to have left. This will depend on where your lymphoma is, how fast it is growing and what impact it is already having on your vital organs. But, even with all this information to hand, it will be very difficult for anyone to make any guarantees we have all heard stories about people who were given six months but who lived for much longer and also stories about those who died sooner than expected. So try not to rely too much on estimates of time. Try to take one day at a time and make the most you can of each of them. How does lymphoma lead to the end of life? There are a number of things that might happen to the body that lead to the end of life. It is usually a result of the impact of disease on your important organs combined with the effects of advanced cancer on your system overall. 3

4 The problems you develop will depend on what parts of your body are involved. When lymphoma involves an important organ, it prevents that organ from doing its job. It is important to remember that your doctors and nurses will try and control your disease as much as possible to prevent or delay the changes described below. You will also have supportive medications and other therapies to keep you as comfortable as possible even if these problems can t be prevented. You may not experience the changes described below. It will be difficult to predict exactly what will happen to you. Talk to your team about what to expect. Talking about it might help you to feel less frightened. Those close to you might also want to know what to expect. You may wish to involve your family in conversations with your medical team. Many people will be reassured to find that death from lymphoma is usually comfortable and peaceful. Bone marrow failure A common problem with lymphoma is involvement of the bone marrow. When this becomes advanced, it will lead to bone marrow failure. Bone marrow failure means that you are unable to make new blood cells red cells, white cells and platelets. Death can result from a lack of healthy blood cells. Shortage of white cells will mean risk of infection. It is quite common for people with severe bone marrow disease to die from an infection, for example a chest infection. Severe infection in one part of the body can lead to infection in the blood and loss of consciousness. Shortage of red blood cells is called anaemia. Anaemia means that your body s tissues and organs do not receive enough oxygen. This causes shortness of breath, weakness and fatigue. Shortage of platelets is called thrombocytopaenia. This will make you more at risk of bleeding, not only bleeding from a cut, but internal bleeding too, such as bleeding in your gut. It might also put you at greater risk of bleeding in the brain, causing a stroke. Your blood may be supported for example, with blood transfusions to keep you active and comfortable even if your bone marrow function is poor. It may be worth talking to your team about the arrangements for that. 4

5 Chemical imbalance Our bodies rely on a careful regulation of salts and chemicals in the bloodstream. These salts and chemicals are responsible for many vital functions and need to be maintained at very precise levels we need some, but not too much and we need to get rid of excess salts and waste products. Advanced cancer can end life by disrupting this delicate balance. Diseased tissues produce abnormal levels of chemicals and waste products. Diseased organs, such as the liver or the kidney, are unable to maintain the balance of chemicals and unable to deal with waste products in the blood. The excess of certain chemicals, coupled with disease in crucial organs, means that the system can become overwhelmed. Such a disruption can cause a variety of potential problems. It will often lead to decreased levels of consciousness. It might stop organs from working properly. For example, high levels of calcium in the blood a common problem in advanced cancer can lead to confusion, agitation and can stop the heart from beating regularly. Involvement of other organs If lymphoma involves your lungs, it will be difficult for you to breathe properly. Disease in the lungs will also make you more inclined to develop a chest infection, which might be hard for your body to shake off. Lymphoma can also involve the linings surrounding your lungs, known as the pleurae. Disease in the pleurae can lead to collections of fluid around the lungs, causing discomfort and pressure. This makes it hard for your lung to expand properly, making it difficult to breathe. If lymphoma involves your liver, it increasingly reduces the amount of healthy liver tissue left. This prevents the liver from doing its many important tasks and this has a serious impact on the rest of your body. Your liver is responsible for removing toxins from your blood. It also makes important proteins such as blood clotting proteins. It makes bile to help you digest food and it also regulates your blood sugar levels. Liver disease can lead to a variety of problems, including nausea, loss of appetite, decreased levels of consciousness, abdominal swelling and discomfort. It may cause your skin to look yellow. This is called jaundice. You may be more at risk of bleeding. Your blood sugar levels will fluctuate. 5

6 Other organs can also be affected by pressure from enlarging lymph tissue. Although pain is rather less common in lymphoma than in other cancers, enlarging tumours can cause pain in surrounding tissue. They can press on tubes and ducts, blocking the passage of various substances. For example, pressure on your oesophagus can block the passage of food. Pressure on blood vessels can block the passage of blood. Pressure on the kidney can block the passage of urine. Hyperviscosity Sometimes advanced lymphoma can cause the blood to become thicker. This is called hyperviscosity. It is caused by abnormal proteins that are produced by the lymphoma cells. Dehydration can make it worse. When your blood is too thick it is hard for it to get through small blood vessels. This can result in decreased blood supply to your organs. For example, it can mean reduced blood supply to your brain. This can cause problems like drowsiness or confusion, headache and visual disturbance. It might cause problems with blood supply to your heart muscle, making your heart beat irregular. What symptoms may I have? The problems discussed below are common to many people with advanced lymphoma. Gradually, your body will slow down all of its functions and the physical changes discussed below will become more pronounced. Itching and night sweats Itching and drenching night sweats are common symptoms of lymphoma. You may experience these symptoms if your disease is difficult to control. They may become gradually worse with time. Loss of weight Advanced cancer often leads to a loss of weight without having to try. The cancer uses up energy and resources. Weight loss is made worse because of loss of appetite. Loss of appetite and poorer digestion It is common to gradually lose your appetite. The changes taking place will reduce your body s capacity to absorb and metabolise food and your body will have a reduced need for nutrition generally. This might lead to loss of weight. It may also contribute to feeling weak and less able to concentrate. 6

7 Don t worry about loss of appetite. Eat small meals when you feel like it and only eat what you feel like eating. Your body may only be able to tolerate small amounts of food. It is possible to supplement your diet with special drinks and feeds. Talk to your health care team about whether this might be appropriate for you. You might find it more enjoyable to eat with others even if you don t feel hungry yourself. Don t try to force yourself to eat, as this might make you feel nauseous or uncomfortable. You are not likely to want to eat or drink very much at all in the final days of life. Those caring for you can keep your mouth and lips moist to keep you comfortable. Fatigue and drowsiness You are likely to experience increasing fatigue. You will have much less energy to do things and you will need to rest a lot of the time. You may find very simple things such as talking to someone increasingly tiring. Talk to your palliative care team for advice about coping with fatigue. These changes happen for a number of reasons. The physical changes described above mean that your system is deprived of enough oxygen and changes in your body chemistry will cause decreased levels of consciousness. Also, the disease uses up a lot of energy. Medications will contribute to weakness and fatigue, in particular pain medications or those prescribed for anxiety or restlessness. Anaemia and infections will cause fatigue too. You are likely to become increasingly drowsy over time and you will sleep for longer periods. In the final weeks or days of life, you are likely to sleep more and more. It might be difficult to wake you. You may become unconscious in the final hours of life. It is likely that you will still be able to hear those around you and feel touch. Your loved ones should feel able to talk to you, be close to you and hold your hand. Shortness of breath Some people will become short of breath, or find that breathing becomes difficult or uncomfortable. This may be caused by anaemia. Anaemia means that your tissues are not getting enough oxygen this tells the brain to make you breathe harder in an attempt to compensate. Breathing difficulties may also be caused by disease in your lung or in the area surrounding your lung. Talk to your doctor or nurse about shortness of breath. You might need some extra oxygen. This is readily available in hospital and at home. 7

8 Your GP can arrange for an oxygen cylinder and other equipment. In the final days or hours of life, your breathing may become more noisy or irregular. Your medical team can provide medication to help with this. Confusion and agitation Some people become more confused or agitated. There are a number of reasons why this might happen. It can be due to the effects of the disease, such as changes to the levels of salts and chemicals in your blood. It might also be due to the effects of medications. Those caring for you should talk to your doctor or nurse if you seem agitated. Depending on what is causing it, they should be able to help you feel more calm. Medications and support will be available to help you and those who care for you. Withdrawal and loss of interest You may become increasingly less interested in what is going on around you. You may not have the energy for it. You might want to see fewer people and might find it hard to cope with too many people at one time. Circulation Your circulation will gradually slow down. You might feel the cold more. Your hands and feet might feel cold. Your face and the skin on your hands, feet and legs might look pale and perhaps blotchy. Incontinence You may lose control of your bladder and bowels. This can be distressing and embarrassing but those caring for you will do all they can to help. Your nurses may be able to provide pads to keep you comfortable and protect clothing and bed linen. Some people will have a catheter, which is a soft tube, put in the bladder to drain urine away. This will become less of a problem with time, as you will gradually take less and less to eat or drink. In the final hours of life your kidneys will stop making urine. Pain Many people are very frightened of pain. Whether or not you have pain depends largely on what parts of your body are affected by the lymphoma and what damage it causes to healthy tissues. Although lymphoma is usually much less painful than other cancers, there is a possibility that you will experience pain. Your medical and nursing team will do all they can to ensure you are not in pain. There are a number of medications that can be 8

9 given on their own or in combination. Medications can be changed if they are not working. Morphine is one of the most common drugs used to treat pain in cancer and to help with other problems such as difficulty breathing. Macmillan Cancer Support publishes a booklet entitled Controlling Cancer Pain. You will find details at the end of this article. What feelings will I have? There is no normal psychological response to the end of life. We all respond in our own way. How you react to death and the feelings you experience, will depend on the person you are. Other experts have observed that you will tend to cope with death in the way that you have coped with other traumatic experiences in your life. In the late 1960s Elizabeth Kübler- Ross wrote a very influential book called On Death and Dying. She had interviewed over two hundred people facing death to ask about their feelings. She found that they had many feelings in common and that these feelings tended to follow a pattern. Experts since have continued to agree with her findings but they have observed that you may not have these feelings in any particular order. You are likely to experience some, but not necessarily all, of the following feelings. You should not feel abnormal if you don t experience the feelings described below. You may move back and forth from one to another or feel like you are experiencing all of them at once. If someone close to you is dying, you are likely to experience similar emotions yourself, but you may not experience them at the same time as the person who is dying. Many of these emotions you will have experienced before. You will already have been through a number of crises in your life including your diagnosis or the relapse of your lymphoma that may have challenged the assumptions you had about life and health. Of course, other things may influence your feelings too. Your physical comfort may have an impact on your feelings. The reactions of those close to you, in particular the ways in which your family usually deals with a crisis, will influence your feelings and concerns. There may be parts of your life that worry you, perhaps something you regret or something you wish you had been able to resolve. Your cultural, spiritual and religious beliefs will influence your thoughts about death and your feelings in anticipation of it. Your responses to dying will also depend on your age and life experiences. For example, a young adult might grieve over different losses than someone who is older. 9

10 When we know that we are going to die, it is common to go through a process of different feelings, as if our natural responses prepare us to let go of the desire to live. It is important to emphasise that you will have support to help you cope with your feelings. Talk to those close to you and your palliative care team. There are many ways to make difficult feelings easier to cope with. Depression is different to normal emotions. If you feel that you might be depressed, or if those close to you suspect that you are depressed, ask for help from your team. Shock Even if you have had lymphoma for a long time or if you know that your treatment has not worked, you are likely to be shocked to learn that you will die from your illness. You might feel bewildered, unable to think straight and unable to take things in. You might feel nothing at all to start with or you might act in a practical way and begin to make plans. Others might be surprised that you seem very calm. Denial It is common to experience denial to refuse to accept that you will die. This might be a psychological defence that helps you to cope, to stop you becoming overwhelmed. Sometimes you might talk as if everything is OK, but your actions might suggest that you are taking things in. For example, you might talk about next year s summer holiday but not do anything about booking one. Denial can be an important way of enabling you to enjoy today without fear of tomorrow, but it can make it hard for you and others to make preparations or talk about the things you need to discuss. Anxiety and fear You are likely to experience anxiety or fear. They are often referred to together but they are different things. Anxiety is a fear of something you can t quite describe, something unidentifiable. Fear is related to something you can name perhaps fear of experiencing pain or fear of what you believe will happen to you after death. Isolation You are likely to experience feelings of isolation and profound loneliness. Although you may have others to be with you and to care for you, you are likely at some point to feel utterly alone. 10

11 Anger Many people will experience anger. Anger is a very normal and understandable response to anxiety, fear and loss. You might find that you feel angry about other things episodes from your past or anger about a close relationship. You may feel envious of those who will live longer than you. It is common for people to feel angry with family members or health workers. You may question why this has happened to you and become distressed with worry about what you have done to deserve this. Kübler-Ross noted that over time, some people reach a stage at which they try to strike bargains with death or God or whatever they feel might be in control. People may seek to prolong life so that they can be present for an important event if I can just live to see my daughter get married, then I will be content. Grief and sadness Grief and profound sadness are part of most people s experiences of death. You will be dealing with a great deal of loss. You will experience sadness for yourself and for those close to you. It is normal to feel sadness. For some, this grief will result in periods of depression. Experts say that going through this intense sadness is important because it can help you towards finding acceptance. Acceptance Some people will reach the point at which they can accept that they are going to die. Acceptance can enable you to die peacefully, without fear. The point of reaching acceptance is very variable. For some this might not happen until the very end of life. Others will not reach the point of acceptance. Those close to you may not reach this point either, perhaps not until a long time after you have died. There are many books about death, dying and our feelings and emotions at the end of life. Try looking at your local library or large book shop. Conclusion You will have support to help you cope with the physical and emotional changes that happen at the end of life. It is important to emphasise that people dying of lymphoma usually end life comfortably and peacefully, whether in hospital, in a hospice or at home. Those caring for you will do everything they can to ensure that this is possible and to support you and those close to you. 11

12 If you would like to discuss anything we have raised in this document in more detail, please telephone our helpline. For more information about palliative care, see our article Lymphoma and palliative care services. Please telephone our helpline for a copy. Further information: Carers UK 20 Great Dover Street London SE1 4LX adviceline@carersuk.org Hospice information services Help the Hospices Hospice House Britannia Street London WC1X 9JG info@helpthehospices.org.uk or St. Christopher s Hospice Lawrie Park Road Sydenham London SE26 6DZ info@stchristophers.org.uk Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ via website Macmillan and cancerbackup merged in Marie Curie Cancer Care 89 Albert Embankment London SE1 7TP via website National Council for Palliative Care The Fitzpatrick Building YorkWay London N7 9AS enquiries@ncpc.org.uk 12

13 Selected references Payne S, Seymour J, Ingleton C, (eds). Palliative Care Nursing: principles and evidence for practice Oxford University Press: Oxford. Robbins J, Moscrop J, (eds). Caring for the Dying Patient and the Family (Third Edition) Chapman and Hall;London. Kübler Ross E. On death and Dying Simon & Schuster Adult Publishing Group; New York. Kemp C. Terminal Illness: a guide to nursing care Lippincott. Stedeford A. Facing Death: Patients Families and Professionals Sobell Publications;Oxford. Appleton JD, Lange. The Psychosocial Aspects of Death and Dying Stamford. Lidstone V et al. Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care. Palliative Medicine. 2003; 17: Acknowledgements This is a revision of an article first published in 2007, written by Catriona Gilmour Hamilton, medical writer. We are grateful to Katherine Hopkins, Macmillan Nurse Consultant Lead Clinician Palliative Care, Royal Free Hospitals NHS Trust for her assistance in the revision of this article. About our publications: The Lymphoma Association is committed to the provision of high quality information for people with lymphoma, their families and friends. We produce our information in accordance with nationally recognised guidelines. These include the DISCERN tool for information about treatments, the NHS Toolkit for producing patient information, and the Campaign for Plain English guidelines. Our publications are written by experienced medical writers, in close collaboration with medical advisors with expertise in the appropriate field. Textbooks and professional journals are consulted to ensure that information is as up to date as possible. References are provided where they have been used. Some publications are written by professionals themselves, acting on guidance provided by the Lymphoma Association. Our publications are reviewed every two years and updated as necessary. Our publications are reviewed by a panel of volunteers with experience of lymphoma. Publications are also reviewed by members of the Lymphoma Association helpline team, who have many years collective experience of supporting those with lymphoma. In some instances, our publications are funded by educational grants from pharmaceutical companies. These sponsors do not have any involvement in the content of a publication. They are not invited to see the content and have no editorial input. Lymphoma Association Views expressed in this publication are those of the contributors. The Lymphoma Association does not necessarily agree with or endorse the comments included here. 13