Choosing where you would like to be looked after at the end of life
Often the choice of where you’ll die depends on what you want, what help you have from family and friends and what services are available in the area you live. Most people would prefer to die at home, as long as they know they will have good quality care.
Wherever you’re cared for, the most important thing is that you get the care you need and your symptoms are well controlled. This can happen in a variety of places. Even if you choose not to die at home, you can still be surrounded by people and possessions that are dear to you.
There may be many advantages to staying at home. For example, you may benefit from being in familiar surroundings with close family or friends to care for you. Being at home may help you feel more in control and may make it easier for you to say your goodbyes.
If home is where you want to be, it’s important that you and your carers have as much support as possible. There are a number of healthcare professionals and voluntary organisations that can help manage any symptoms you may have and support you and your family at home. If you’d like to be at home, let your nurse or doctor know.
Although dying is a natural process, few people have experience of looking after someone who is dying. If you’re a carer, the thought of looking after someone you care for, or are close to, at home can be frightening. However, it can also be one of the most rewarding experiences you can have, and a time of great closeness.
Who can help if you’re looked after at home
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Caring can be hard work, both physically and emotionally, so it’s important that you and your carers have as much support as possible. It’s not always easy to ask for help, as we often feel we should try to cope alone. However, there are many health and social care professionals who can help you.
While you’re at home, your GP has overall responsibility for your care. They can help you if:
You’re worried about any changes in your symptoms. They can arrange to see you either in the surgery or at home and when they assess you, they’ll discuss options for treating and controlling your symptoms.
You want to talk through what may happen as you become less well.
You want to make an Advance Decision to Refuse Treatment or a plan for dealing with emergencies (although this isn’t often needed) so that you get the care you want.
You need nursing care. They can arrange for you to be seen by a district nurse who will help to organise this for you at home.
You need specialist care from a palliative care team. They can arrange for you to be seen at home by a palliative care nurse.
District nurses work closely with GPs. They make visits to patients and their carers at home. They can assess a person’s needs and help with:
Coordinating your care. They will contact other health or social care professionals to help with your care, if they’re needed.
Monitoring and treating any difficult symptoms you may have.
Giving injections, changing dressings, giving advice and support on pressure area care and toilet problems, such as incontinence and constipation. They may organise to supply appropriate equipment to help with pressure care or continence.
Showing your relatives or carers how to move you and take care of your personal needs.
District nurses often work with palliative care nurses to help support you and your carers so that you can remain at home. They may be able to arrange for a social carer or a healthcare assistant to help with tasks such as washing and personal care.
Nurses who specialise in a specific disease
Nurses who specialise in caring for people with specific diseases or conditions, for example heart failure, renal disease or motor neurone disease (MND), are known as clinical nurse specialists (or CNSs). They work in partnership with your district nurses, hospital or community team.
Marie Curie Nursing Service
The Marie Curie Nursing Service’s team of nurses across the UK offers hands-on nursing care to people with cancer, heart failure or other illnesses, who are nearing the end of their life. Marie Curie nurses visit people in their home to provide care overnight, or for part of the day, so carers can get a good night’s sleep or a break during the day. The nurses also provide emotional support.
Marie Curie nursing care is free and your district nurse or GP will usually arrange it for you.
Hospital or community specialist palliative care teams
Specialist palliative care teams provide care to improve the quality of life of people and their carers who are coping with life-limiting progressive illnesses, including cancer. You may be referred to a palliative care team if you need specialist support or care. For example, if you have troublesome symptoms that need controlling.
Hospital palliative care teams are usually based in a hospital, and community palliative care teams are based in the community. Hospital palliative care teams can visit you if you’re an inpatient or if you’re attending a clinic appointment. Community palliative care teams are often linked to a hospice and can visit you at home. All palliative care teams can give you advice on pain control, coping with other symptoms, emotional support and advice on practical problems.
Palliative care teams include specialist palliative care nurses and doctors. Many teams also have, or work closely with, a social worker, counsellor, occupational therapist, physiotherapist and a spiritual care coordinator or chaplain.
Specialist palliative care nurses are experienced in assessing and treating your symptoms and also provide counselling and emotional support for you and your carers. Most specialist palliative care nurses work closely with a wider hospital or community palliative care team, which includes doctors and other healthcare professionals.
Some specialist palliative care nurses are called Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may see them when you’re at clinic or in hospital.
Doctors specialising in palliative medicine give expert medical advice on managing people with advanced disease. They work closely with palliative care nurses and may visit people at home, if needed.
Some community palliative care teams have nurses who can visit you at home and provide practical care such as washing, dressing and giving drugs. A specialist palliative care nurse will usually arrange care from these nurses.
Social workers/care managers
Social workers can organise help with housework, shopping and cooking, or a personal care assistant to help with tasks such as washing and dressing. They can arrange a care package for you that addresses your individual needs.
You or your doctor or district nurse can contact them to ask for an assessment of your needs. If you can afford it, you may be asked to pay towards the cost of this help, but it may be funded for you in some circumstances.
Social workers or care managers can also give you information about any benefits you may be able to claim. They may also be able to provide more advanced counselling and emotional support for you and your carers.
Physiotherapists can help ill people to move around. They can also help with pain relief and breathing problems.
Occupational therapists can help you maintain your independence and quality of life. They can visit your home to assess whether specialist equipment would help you move around and be able to do as much for yourself for as long as possible. Following their assessment, they will arrange to provide the equipment you need.
Occupational therapists will also help you manage symptoms such as fatigue and anxiety.
Counsellors are trained to help people in all types of situations. Seeing a counsellor can help people to understand and express their feelings, and cope better with their situation.
Spiritual care coordinators or chaplains
Spiritual care coordinators offer spiritual care and support.
Voluntary organisations and charities
Voluntary organisations and charities can also offer various kinds of help, including information, loans of equipment, grants and transport.
Some organisations have volunteers who can provide short periods of respite care to give your carer a break during the day time. Others provide befriending services for people who are on their own. They can introduce you to a trained volunteer who may be able to give one-to-one help and support.
Your district nurse, specialist nurse or GP can tell you how to access these health and social care professionals and voluntary organisations. They will also be able to tell you about the specific types of help and support available in your area.
Where to get the equipment you need
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Your district nurse or occupational therapist can assess your needs and organise equipment to help you manage at home.
For example, your district nurse can arrange for you to have:
a commode, urinal, bedpan or incontinence sheets
a special mattress or chair cushion
a hoist or sling
a special bed – like a hospital bed with adjustable head and foot sections.
Your occupational therapist can assess you and possibly supply you with:
a wheelchair or ramp
specialist equipment to help you move or to help others to move you
grab rails and other equipment for your shower or bath.
Your occupational therapist can also give advice on small gadgets and where you can buy them. For example, two-handled mugs and special cutlery.
If you haven’t seen an occupational therapist, but need some equipment that they usually supply, ask your district nurse, GP or community palliative care team to arrange for one to visit your home.
Many shops and organisations also sell or hire aids and equipment. The British Red Cross hires out equipment such as commodes and wheelchairs. You can also buy items such as incontinence pads and urinals from most large chemists or on the internet.
Hospices specialise in caring for people who are dying. They have staff who are experts in controlling symptoms, such as pain, and providing emotional support.
You can go into a hospice for different reasons. It may be for a short time to have your symptoms controlled or for a period of respite care to give your carer a break. You may decide that you’d like to die in a hospice rather than at home or elsewhere. If so, you’ll need to discuss your wishes with the hospice team involved with your care.
Hospices are very different from hospitals. They are quieter and tailor their care to suit each person. Visiting is usually less restricted than in a hospital. They offer a wide range of services for patients and their families, such as counselling, spiritual care, complementary therapies and bereavement support.
Many hospices have specialist palliative care nurses (expert nurses in symptom control and emotional support) and staff nurses or healthcare assistants who can also visit and help care for people at home. Some have day centres for people living at home.
Accommodation and care in a hospice is always free of charge. Sometimes there’s a waiting list but urgent admissions can usually be organised within a couple of days.
You can find out more about your local hospice from your GP, district nurse or palliative care nurse. Help the Hospices also has useful information about hospices and where they are located across the UK. If you’re not sure about the idea of hospice care, you can ask to visit the hospice before making a decision. The staff will be able to show you around and chat through any questions or concerns you have.
Nursing or residential homes
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If you’re likely to need nursing care for several months, a nursing home may be more appropriate than a hospice. You may still be able to go to the hospice for day care, or a specialist nurse from a hospice may be able to visit you in the nursing home.
Private nursing homes usually offer short-stay or long-stay care. Your GP, district nurse or social worker can arrange this for you, but it may take some time. A fee is charged for care in private nursing homes, although you can sometimes get help in paying for this if you have little or no savings.
You may be able to apply for the NHS to fully fund your care in a nursing home. For example, if you’re reaching the end stages of your illness or if you have a complex medical condition that means you require a lot of care and support.
A ward nurse, district nurse or hospice nurse will give you more information about the process for making an application for fully funded care. If you live in Northern Ireland, funding for care in nursing homes is means-tested.
Lists of local registered care homes and details of registered nursing homes are available from your local social services department and your area health authority.
You can also search for a nursing home by visiting carehome.co.uk
If you’ve been in and out of hospital over the last few months, you may want to go back to your usual hospital ward when you need full-time nursing care. This may be easier to organise if you’ve been in a small local hospital (for example, a cottage hospital) rather than in a busy district general or teaching hospital.
Although many people die in hospital, it may not be the most peaceful place to be if the ward is busy. Often you’ll need to fit into the ward routine, rather than being looked after in the way that you’d like.
Hospitals have palliative care teams that include specialist nurses and doctors. A specialist nurse or doctor from this team will be able to see you while you’re in hospital. They can advise you on controlling your symptoms and can give you and your family emotional support.
Information for relatives and friends
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If you’re a relative or friend, it’s important that you don’t feel guilty if you encourage your loved one to die in a hospice, hospital or nursing home. As time goes on, you may feel that they would be better cared for by healthcare professionals in a hospice or nursing home. This may be because their situation has changed and you don’t have the nursing or medical skills to look after them.
Always talk to their district nurse or GP if you feel you need more help to care for them at home. They may be able to provide the extra support you need or they can advise you on the best place for your relative to be cared for.
If you need to move them from home at some point near the end of their life, you shouldn’t see this as a failure. Instead, you should see it as you wanting to make sure that they get the best possible care.