Choosing where to die can be hard to think about. But being in the right place for you can be really important when you know your life is coming to an end. Although your needs may change over time, most people find it helpful to think about what they would like before they become too ill.
Where to start?
The best thing is to talk it through with the people closest to you. You should also talk to your key healthcare worker – the person providing the care who knows you best. Together you can explore what is possible and realistic for you.
You can then record your preferences in an Advance Care Plan - so that everyone involved in your care is aware of your choices.
Often it is not a single decision, but different preferences you would have in different situations. For example, you may choose to stay at home as long as possible, but wish to go into a hospice in certain circumstances – such as if it is no longer possible to manage your symptoms at home, or if your family are struggling to cope.
When do you have to decide?
Choosing where to die can be very hard to think and talk about, and there is no right or wrong time to choose. You can take the time you need and decide when you are ready.
Sometimes your condition may change suddenly, and then your healthcare team might encourage you to make a decision so that they know your wishes.
After you have made the decision, it is still possible to change your mind. Let the healthcare team know and they will make sure that your wishes are recorded and your advance care plan is up-to-date.
What are the options?
The options are likely to be slightly different depending on where you live, but the main places you can choose to die are:
- at home
- in a hospice
- in hospital
- in a nursing (care) home.
There are no right or wrong decisions. It is about choosing where you feel most comfortable and what works best for you and the people who are important to you.
Many people feel they would prefer to die at home, but also have concerns about what this would be like. You may be worried about the impact on the person caring for you, or that it won’t be possible to control your pain. It is important to speak to your healthcare team to understand what support would be available at home.
Your healthcare team can organise any equipment and other items you may need to make it possible for you to stay at home. Being at home means you can be in familiar surroundings, and continue to get care from the people you already know. You can be more flexible about things like meal times and eating what you want, and can have pets with you.
Sometimes carers also find it more convenient, as they are able to have their own routine. You may find it helpful to make some changes at home, such as moving your bedroom downstairs. This can help you to feel more a part of family life. It can also have practical advantages - such as you and your carer not having to climb the stairs, or being closer to the kitchen and other facilities.
Your healthcare team will make sure that you receive the medicines you need to control your symptoms and keep you comfortable. If your symptoms change or you become uncomfortable, you can call the district nurse or your GP who will be able to review your medication.
Depending on where you live, you may be able to receive care from your local hospice. This may include home visits from specialist nurses, visits to the day unit and short stays in the hospice. If you decide to stay at home, the support available often varies depending on where you live. It will help you and your carers if you know in advance who to contact for emotional or practical support.
In a hospice
Hospices provide specialist care to relieve symptoms and improve quality of life of for people facing the last years and months of their life. It is a common myth that hospices are gloomy places. In fact, they are calm and welcoming, with a friendly atmosphere and decorated in a more homely way than a hospital.
As part of your care, you may be referred to your local hospice as an outpatient for services such as complementary therapy or day therapy. You may also go into a hospice for a short stay - for example whilst your healthcare team get control of a new symptom or see how you react to a new medication. In fact, 40% of patients who visit one of our hospices or palliative care hubs go home again.
People sometimes choose to be in a hospice when they are concerned that their loved ones may not cope at home. People also choose hospices because they know that they will have access to specialist care 24 hours a day - so if there are any changes in their condition, it is often quicker to get them under control. Going into a hospice can relieve many of the pressures on friends or family members who are looking after you. It can give you a chance to get back to your normal relationship with each other, rather than being patient and carer.
You are encouraged to create a more personal environment by bringing in your own belongings and perhaps having your pet to visit. If people choose to die in a hospice they will usually move there in the last two weeks of their life.
Hospice care is usually provided free for the people who need it, usually by a combination of statutory (Government) funding and charity income. All Sue Ryder hospice care is free.
It is less common, but some people choose to die in hospital. This can be because they have been visiting the hospital regularly for treatment and have developed good relationships with the staff there. Most hospitals have specialist palliative care teams who specialise in controlling symptoms and looking after people who are dying.
But it may not always be possible to choose to die on the ward where you have been receiving your treatment. Some cancer hospitals have a palliative care ward. These wards are often quieter than the busy treatment wards and aim to provide an environment more like home.
For example, you can usually bring in your own duvet, pillows and other personal belongings to make you feel comfortable.
In a nursing home
Sometimes, people may be stable enough that the hospital or hospice is not the right place for them, but still not well enough to manage at home. If this happens to you, and you need frequent nursing care, then a nursing home might be the most suitable place for you.
If you are already living in a nursing home, you may wish to remain there. In this case, you will continue to receive care in the same way as anyone else receiving care in their home.
Nursing homes are staffed by professional registered nurses and have a range of experienced care staff to look after you. Although nursing homes usually offer long-stay care, you may also go into one for short-stay or respite care to support those caring for you.
If you want or need to go into a nursing home, the NHS may pay for it as part of your Continuing Healthcare. Most people will need to pay something towards their care. The exact amount you need to pay is worked out based on national guidelines, although your care may be free if your stay is temporary (normally less than eight weeks).
Will you be able to die where you choose?
Those caring for you will do their best to make sure you can die where you choose, but sometimes there are reasons why it isn’t possible.
Some things you can plan ahead for and try to find an option that works for you. Other things are less predictable - such as if the person caring for you becomes unwell or if you develop a new symptom that can’t be managed at home. In these cases, your healthcare team will always talk with you about how best they can still meet your wishes.
I have elected to be treated in a hospice when my number is called. In the meantime, I have been attending a day hospice and got to know all the staff and other patients. It's just one day a week and we meet for a few hours and then have lunch - not a bad way to spend the day."