Choosing where to die

 

Often the choice of where you will die depends on what you want, what help you have from family and friends, and what services are available in the area where you live. The Department of Health has produced a document called the End of Life Care Strategy (available from dh.gov.uk|), which recommends that people who wish to die at home should have access to support services and specialist care, day or night when needed.

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, not just at home. Even if you choose not to die at home, you can still be surrounded by people and possessions that are dear to you.

If you are a carer reading this, it’s important that you don’t feel guilty if you encourage your partner or relative to die in a hospice, hospital or nursing home. As time goes on, you may feel that they would be better cared for by health professionals. If you need to move them at a late stage, this shouldn’t be seen as a failure, but rather because you want to make sure that your loved one gets the expert care they need.

Staying at home Back to top

If home is where you want to be, it’s essential that you and your carers have as much support as possible. Caring can be hard work, both physically and emotionally. It’s not always easy to ask for help, and some people find it impossible. However, it’s important that your carers have enough energy to do the things that only they can do, such as spending time talking to you and supporting you. They can pass on some jobs to other people where possible.

Your GP, district or community nurses, and specialist palliative care teams from the local hospital or hospice can tell you about the support they will be able to provide. This may include nursing care, advice on controlling symptoms, emotional support, spiritual care and rapid access to dedicated telephone helplines and homecare services, day and night.

If you need a commode, bedpan, bottle, special mattress or incontinence sheets, ask your district nurse. You may need to rearrange your home, for example make a dining room into a bedroom, so that you can be cared for on the ground floor and don’t have to cope with stairs.

Volunteers from local organisations may also be able to help. For example, they might sit with you while your carer shops, or they may be able to do the shopping themselves. Care at night (nurses or night-sitters) may also be available in your area. Marie Curie nurses can stay in your home overnight, or for part of the day, so that your carers can get a good night’s sleep or a break. The services of Marie Curie nurses are free and are usually arranged through district nurses. 

You can make an appointment with your GP or specialist palliative care team to talk through what may happen and make a plan for dealing with emergencies which may occur. It’s important to know how to reach the district nurses or out-of-hours doctor. If you’re being looked after by a community palliative care team, you need to know how to contact them in the middle of the night or at weekends. This should help you to sort out most problems that might happen at home.

Hospices Back to top

Hospices specialise in the care of people who are dying. They can offer a wide range of services such as complementary therapies, counselling, spiritual care and bereavement support. They specialise in controlling pain and other symptoms, and in supporting the patient and their family.

Hospices are very different from hospitals. They are quieter and tailor their care to suit each person. People can often go into hospices for short periods for their symptoms to be controlled or for a period of respite care to give their carer a break.

There are now more than 200 hospices in the UK. Many have home-care teams and day centres for people living at home. Some are funded by charity and some are part of the NHS. Care in a hospice is always free. You can find out more about your local hospice from your GP, district nurse or palliative care nurse. 

Nursing or residential homes Back to top

If you’re likely to need nursing care for some time, a nursing home will probably be more appropriate. You may still be able to go to a hospice for day care, or a specialist palliative care 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 if you are reaching the end stages of your illness or if you have a complex medical condition which means that you require a lot of care and support.

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.

Hospitals Back to top

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. However, this may be difficult to organise if the ward is very busy. Many people die in hospital, but a busy ward may not be the most peaceful place. Often you’ll need to fit into the ward routine, rather than being looked after in the way that you would like.

Nowadays, hospitals have palliative care teams which include specialist nurses and doctors. A specialist nurse or doctor from this team will be able to see you while you are in hospital. They can advise on controlling your symptoms and give you and your family emotional support. Some hospitals have specific palliative care wards for people who are dying. Care is more personalised on these wards.