Lymphoma and palliative care services

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1 Produced 2010 Next revision due 2012 Lymphoma and palliative care services 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 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 will 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. The Lymphoma Association has produced information about different aspects of the end of life. This article discusses what palliative care is, who provides palliative care and how to find palliative care. The following documents are also available: Lymphoma and the end of life Making plans for the end of life What to do when someone dies For copies of these documents, please telephone our helpline. What is palliative care? Palliative care is a medical speciality that concentrates on the care of people who have a life-limiting, incurable illness. To palliate means to provide relief, or to lessen suffering. Palliative care aims to provide the best possible quality of life, to enable you to live your life as fully as possible, and to live and die with dignity. Palliative care should be holistic. This means that it should attend to your whole person physical, psychological and spiritual. Palliative care should also offer holistic support to those close to you. 1

2 Palliative care begins with an assessment of your situation to find out what difficulties you have, to discuss your wishes and expectations and to identify what support you might need. Your care should be reviewed on a regular basis and adjusted according to your need. If you wish, the people close to you may be involved in the planning of your palliative care. The care you have will depend on your needs, but may include some of the following: control of pain and other symptoms, to maximise your comfort information about what is happening, what to expect and what support is available psychological and emotional support spiritual support guidance on financial support and liaison with social services support to help you maintain independence and quality of life, for example physiotherapy or occupational therapy respite care to support your carers formal hospice admission if needed support to those close to you, before and after your death. Symptom control Physical and emotional changes accompany the end of life. These can cause some of the following symptoms: fatigue and weakness digestive and bowel problems such as dry or sore mouth, nausea and constipation low mood, anxiety, difficulty sleeping and depression shortness of breath night sweats itching lymphoedema (swelling of a limb because of blockage of the lymph system) pain. Your palliative care team are specialists in symptom control and will work with you and your haematology team to alleviate your symptoms and keep you comfortable. Many symptoms can be well controlled. 2

3 They may prescribe medications to be taken as tablets or syrups. If you find it hard to take medicines by mouth, they can be given by injection. Syringe driver pumps are sometimes used for control of pain, nausea and other symptoms. These provide a constant delivery of medication either into a vein or, more commonly, under your skin. Other supportive therapies include transfusions of blood and providing oxygen. Complementary therapies are often used in palliative care. Studies suggest that therapies such as relaxation, massage, aromatherapy, visualisation and reflexology can help you to relax and can help with pain, depression and anxiety. Your palliative care will change in response to your changing needs. You should keep your medical and nursing teams informed of any changes in how you are feeling. Your needs and wishes are of primary importance and every effort will be made to meet them. Who provides palliative care and where does it happen? Palliative care is provided by a wide range of professionals in a variety of places. Many people will have palliative care provided by their existing medical and nursing teams or by their GP and community nurses. Some people will require more specialist palliative care. This can involve a variety of professionals with different areas of expertise. Specialist palliative care can be provided by one or more of the following: Hospice Hospital Palliative Care Unit or Palliative Care Team Community palliative care teams Macmillan nurses and Marie Curie Nurse Specialists. The care you have will depend on your individual needs. It will also depend on how palliative care services are arranged in your local area. For example, there may not be a Macmillan nurse in your area, but the same care might be provided by someone else. Or perhaps your nearest hospital can provide inpatient palliative care instead of a hospice. 3

4 As far as possible, you will be cared for in a situation that suits you. Many people want to remain at home and statistics suggest that increasing numbers of people are able to do this if they wish. It is likely that your care will involve a number of different places home, hospital and hospice depending on your needs and those of your loved ones. GPs and community nurses GPs and community health professionals spend much of their professional lives supporting those who are terminally ill. They are likely to be an important part of your care. Your GP will be an important point of contact if you need help or advice. He or she can liaise with other members of the palliative care team and refer you for other services if necessary. Community nurses provide nursing care at home. Most community nurses spend a lot of their time caring for the terminally ill. Community nurses can provide care such as help with medications, dressings and care of urinary catheters. They can also liaise with other people involved with your care and will be in regular contact with the specialist palliative care team. Hospices Hospices are places that provide specialist care for those with an active and progressive disease that cannot be cured. They provide care towards the end of life, which may be a period of some months or weeks. The hospice movement began not as part of the NHS, but as a project established by voluntary organisations. Most hospices are still run by voluntary organisations small local charities, or larger national organisations like Sue Ryder Care or Marie Curie Cancer Care. They work closely with palliative care professionals in the NHS. Hospices employ a range of staff trained in specialist palliative care, including doctors, nurses, counsellors, pharmacists, social workers and religious advisors. Trained volunteers also help in hospices and have a wide range of responsibilities. Some hospices can provide day care and care at home. If things become too difficult, or if your symptoms are difficult to manage at home, your team may suggest a short admission to a hospice. Admission to a hospice can be arranged for you if necessary by your usual doctors and nurses. The average length of stay is around two weeks. 4

5 Day hospice facilities can provide medical treatment and allow for assessment and treatment of your symptoms. Complementary therapy may also be offered. Going to a day hospice can provide a break for your carer. Some day hospices have support groups to help you gain knowledge and strength from the experience of others, including support groups designed for carers. Some hospices provide a hospice at home, meaning that specialist palliative care staff from the hospice will visit you at home if necessary, to make changes to your care and liaise with other people such as GPs and community nurses. Many people assume that hospices are places that people go to die. It is true that some people will choose to die in a hospice and some people will die there because they have too many difficulties managing at home. But in fact many patients attend hospice for short periods and return to their own homes after an admission. If you want to remain at home your hospice will do everything they can to make this possible. You can find more information about hospices by contacting Hospice Information. You will find the details at the end of this article. Palliative care in hospital Palliative care can be provided in hospital, by your usual lymphoma team and others. This might be given as an outpatient. For example, some people will have steroids or low dose chemotherapy to help minimise the lymphoma symptoms. People sometimes have radiotherapy to a particular area of disease, especially if it is causing discomfort. Many people with terminal lymphoma will spend some time having treatment in hospital. Treatment in hospital might be for a short period, to help with symptom control or to deal with a particular problem. For example, if you have lymphoma in your bone marrow, you will be at risk of bleeding and infection, both of which can make you ill very quickly. Hospital may be the only place able to provide medicines or blood transfusions at short notice. Some people will remain in hospital for longer periods. Some hospitals have palliative care units that provide similar care to a hospice. Many hospitals in the UK have specialist palliative care teams, or symptom control teams. These are groups of professionals including palliative care consultants, specialist nurses, occupational therapists, chaplains and counsellors. These teams can assess you whilst you are in hospital providing you with direct support and making suggestions on symptom control and other elements of care to ensure you are comfortable. 5

6 Some hospital teams also provide care at home too. They will keep in touch with your GP, district nurse or Macmillan nurse. The principles of providing palliative care are the same, regardless of whether you are in a hospice, a hospital or at home. Being in hospital should not mean that you are given more treatment than you wish to have. Advance decisions, or living wills, can help to ensure that you do not have unwanted treatment should you be unable to express your wishes. You will find these discussed in our article Making plans for the end of life. Please telephone the helpline for a copy. Macmillan nurses Macmillan nurses are registered nurses with substantial experience of palliative care or cancer nursing. Many of them have additional specialist nursing qualifications or counselling qualifications. They are mostly employed by the NHS, but their jobs are initially funded by the charity Macmillan Cancer Support hence the name. Macmillan nurses provide advice and support to those with advanced progressive illness, their families and friends, both in hospital and at home. They help with symptom and pain control and provide emotional support and information. They also work with and coordinate other professionals, such as the hospital team, your GP and district nurses. You need to be referred to a Macmillan nurse by one of your team or your GP. Not all areas of the country have Macmillan nurses. Ask whether Macmillan nurses are available in your area. Don t worry if you can t see a Macmillan nurse. Other professionals do a similar job and will be able to provide similar care. Marie Curie nurses Marie Curie nurses are funded by the charity Marie Curie Cancer Care and the NHS. They provide care at home for people at the end stages of their illness. Sometimes they can stay overnight to give carers a rest. The service is free of charge to patients. However, limits on local NHS spending may mean that there is a limit to the number of available sessions. You need to be referred to the Marie Curing nursing service by your GP or community nurse. Ask what is available in your area and tell someone if you think you need this kind of support. For more information about Marie Curie nurses you can contact Marie Curie Cancer Care. You will find their details at the end of this article. They also provide information about coping with common symptoms. 6

7 Care homes Many people will have palliative care in nursing or care homes. Some nurses working in nursing or care homes will also have experience in looking after people who are terminally ill. Some homes have designated palliative care beds. You should also have access to specialist palliative care in the care home if you need it. Your specialist palliative care team can visit you and provide treatment there just as if you were still in your own home. If you or your family feel that you may need more specialist care than the nursing home can provide, speak to the manager or matron of the home, to your GP or hospital doctor. How do I get palliative care? Most palliative care services are arranged by referral. This means that your GP or hospital team will contact the appropriate palliative care professionals and ask them to be involved in your care. You will probably be referred to the hospice or palliative care service nearest to your home. In very particular or special circumstances referrals may be made to services further away. You may need to ask about palliative care. A referral to specialist palliative care services may not take place automatically. Find out what services are available in your area. Tell people if you need help. For more information about what you can expect of palliative care, see the Further Information section at the end of this article. Do I have to pay for palliative care? Specialist palliative care is provided free of charge in your home, in hospital and in hospices. If you are having support at home from social services, the situation is more complex. There are usually charges for care from social services. You can get allowances towards the cost of this care, known as Attendance Allowance and Disability Living Allowance. If you are terminally ill, you will get the maximum benefit and it will be processed quickly under an arrangement known as Special Rules. But if the care you need is primarily as a result of your health problems, the NHS may be able to pay for your social services care at home or in a care home. This is known as continuing care. 7

8 You should get some advice from a social worker about continuing care, benefits and care costs. You can contact a social worker via your local council Social Services department. Some hospitals have social workers attached to them. Ask your hospital team about this. For more information about benefits and care costs, you can contact one of the organisations listed below. Further contact details are provided at the end of this article. your local social security office, also known as the Job Centre Plus office Government and NHS websites, such as the Department of Health website, the NHS choices website and Department for Work and Pensions website the local Citizens Advice Bureau the local welfare rights unit your local law centre Carers UK Macmillan Cancer Care helpline To find your nearest social security office, look for the Department for Work and Pensions advertisement in the business numbers section of the phone book. You can also find numbers there for your local Citizens Advice Bureau or law centre. Improvements in palliative care Unfortunately, currently there are some inequalities in access to palliative care. Some areas have more complete or accessible palliative care services than others some places do not have a Macmillan nursing service, or might not have a hospice nearby. The Department of Health and the NHS have produced initiatives to make sure that everyone has the same quality of palliative care and end of life care. These guidelines and frameworks should ensure that people get the help they need, when they need it, whether they are being cared for in their own home, a care home, a hospice or the hospital. But these improvements take time. In the meantime, you and your family may need to be more vocal about what you need. Talk to your doctor, nurse or GP about what palliative care services are available in your area. If you feel you need help with something, be sure to ask. You can find out lots more about improvements to palliative care services online. 8

9 You can read the NICE guidelines for palliative and supportive care. This document sets out standards of care that professionals should be aiming for. The NICE website details are at the end of this article. The Department of Health website provides more information about the End of Life Care Strategy. The website details are at the end of this document. Other organisations, such as the National Council for Palliative Care, Carers UK and Macmillan, can provide more information about palliative care. Further information For more information about the government s End of Life Care Strategy, you can visit their website at Carers UK 20 Great Dover Street London SE1 4LX Hospice information services: Help the Hospices Hospice House Britannia Street London WC1X 9JG or St. Christopher s Hospice Lawrie Park Road Sydenham London SE26 6DZ Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ via website Marie Curie Cancer Care 89 Albert Embankment London SE1 7TP via website National Council for Palliative Care The Fitzpatrick Building YorkWay London N7 9AS

10 Selected references Ansell P, et al. Haematological malignancies and palliative care. British Journal of Haematology. 2007; 13: Palliative Care Defined, National Council for Palliative Care via website (accessed April 2010). Supportive and palliative care services for adults with cancer. Understanding NICE guidance: information for adults with cancer, their families and carers and the public, NICE, March 2004 V Lidstone et al. Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care. Palliative Medicine. 2003; 17: Payne S, Seymour J, Ingleton C, (eds). Palliative Care Nursing: principles and evidence for practice Oxford University Press: Oxford. Acknowledgements This article, first published in 2007, was 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. 10

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