Thinking and planning ahead

You may have thought about where you would prefer to be cared for towards the end of your life and where you’d prefer to die. This might change over time. For example, you may prefer to be cared for at home and then go to a hospice in your final days when you need more support.

Places you can be cared for may include:

• a hospital
• a hospice
• your own home
• a family member or friend’s home
• a nursing home
• a residential home.

When deciding where you would prefer to be cared for, you should try to think about what’s important to you. You might want to think about:

• your physical and personal needs
• how any pain can be managed  
• whether a family member or friend could help look after you  
• who can help you during the day, in the evenings and at weekends
• how easy it is for your loved ones to visit and when they can visit
• being in a calm and peaceful environment
• the needs and preferences of your family and friends.

You might not be able to choose where you’re cared for or where you’ll die. This can be upsetting for you and your family. But certain physical and personal needs can be managed better in some places than in others. For example, some men need medicines or care that can’t be given at home. And some men die in hospital before they’re able to go home. It might also depend on the services available in your area. If you or your loved one live in a nursing home you may need to ask what services they provide – as this can vary – to help you work out if your needs can be met.

Getting help at home

If you want to stay at home, your GP and district or community nurse and sometimes social services will assess your needs and co-ordinate your care. You might be seen by a nurse. They can visit you at home and arrange for other people to support you. For example, you might have carers come in to help with washing and eating. Hospices and community palliative care services often provide care and support in people’s homes. This can include night care but you would need to check what is available in your local area. Contact Marie Curie for more information about getting support at home.

Your GP may prescribe medicines to help with any physical symptoms, such as pain. These may be medicines you take yourself, or a nurse may come and give them to you. They may also prescribe medicines that you’ll only need to take if your symptoms get worse. 

You won’t have a nurse with you all the time. So it can sometimes be harder to manage pain and other symptoms at home. Your doctor or nurse should give you details of someone to contact if you are worried, including in the evenings and at weekends. 

Your family and friends may have an important role in looking after you. It’s important to think about what support they might need as well. Read more about supporting someone who’s approaching the end of their life.

If you live on your own

It can be especially hard to cope at home. If you have friends or neighbours nearby, they may be able to help. Joining our online community or a local support group, or accessing our one-to-one support service can also be a good way of speaking to people with similar experiences. Speak to your doctor or nurse about what support is available for you. 

Hospice care

Hospices provide a range of services for men with advanced prostate cancer, and their family and friends. They can provide some of the palliative services listed above. This includes treatment to manage symptoms, as well as emotional, spiritual, psychological, practical and social support. Some services will help give your family or friends a break from caring. This is called respite care.

Hospices don’t just provide care for people at the end of their life. They will look at you and your family’s needs and talk to you about the support you might need.

There are different types of hospice care.

• In your home. This is how most hospice care is provided. It means people can get support and care in their own home.
• Day care. Some people visit a hospice during the day. This means they can use their services while still living at home.
• Short stay. You might be able to stay in the hospice for a few days. This might be to help get your symptoms under control, or to give your loved ones a short break.  
• During the final stages of your illness. Some people decide they want to be cared for in a hospice during their final days. Having people around to help you and your family can be reassuring. 

Hospice care is free for patients, family members and the people looking after them. 

Most hospices are happy to tell you about the services they provide and show you around.

Your GP, hospital doctor or district nurse can refer you to a hospice service. Find out more about hospice services in your area from Hospice UK. 

Going in to hospital

Many men with prostate cancer stay in hospital at some point in their last years of life. Some men decide to go into hospital to help get their symptoms under control. Other men have to go into hospital if their symptoms suddenly get worse. This can be distressing or upsetting, but it may be the best way to get the care you need. 

Some hospitals can access your medical records and see the treatments you’ve had and medicines you’re taking. But you might find it useful to keep a record of your treatments and medicines, just in case you need to go to a hospital that doesn’t have your records.

If you’re admitted to hospital, this may just be for a few days until your symptoms are under control. But some men with prostate cancer die in hospital. Make sure the doctors and nurses know where you’d prefer to be cared for and where you'd prefer to die, so that you can make decisions together.

You might need to make decisions about your medical and personal care. For example, you may need to decide how and where you’d prefer to be cared for and whether there are any treatments you don’t want to have. You, your loved ones, and your doctor or nurse will usually make these decisions together.

But some men become too unwell to make these decisions so you may want to think about the care you’d like to receive if this happens. This is called advance care planning and it can help you to make sure you get the care you want. It can also take the pressure off your family or friends.

Writing down my wishes

Advance care planning can be written down in a document called an advance statement. An advance statement (or anticipatory care plan in Scotland) is a general statement about anything that is important to you in relation to your future health and wellbeing. It can include:

• your preferences about the type of care you want
• who you would like to make decisions about your care, if you are unable to make them yourself
• where you would prefer to be cared for – for example, at home, in a hospice or at hospital
• where you would prefer to die.

Your doctor will take your advance statement into account when making any decisions about your care. But they don't legally have to follow what your advance statement says, and your doctor might not always be able to follow your wishes.

Deciding not to have certain treatments

If you decide that you don’t want to have certain treatments in the future, this is called an advance decision. An advance decision, advance directive to refuse treatment (ADRT) or living will, allows you to record any treatments you don’t want to have in certain circumstances. For example, you might want to think about whether or not you’d want to have cardio pulmonary resuscitation (CPR) if your heart stopped. An advance decision or advance directive is used if there’s ever a time when you are unable to make a decision for yourself, or if you can’t communicate what you want. For example, if you are unconscious or very sleepy in your final days.

You can’t use an advance decision or advance directive to ask for a specific treatment or to ask for your life to be ended.

An advance decision to refuse treatment is legally binding in England and Wales. This means your doctor or nurse would have to follow it.

In Scotland, you can make an advance directive to say what treatments you would refuse, if you were unable to decide for yourself or communicate your wishes. An advance directive isn’t legally binding, but your doctor or nurse would need to take it into account when making a decision on your behalf.

In Northern Ireland, advance decisions or directives aren’t legally binding. However, an advance decision could potentially be upheld under common law (in a court case). It’s still a good idea to record what treatments you would refuse if you couldn’t decide yourself or communicate your wishes. Your doctor or nurse should take this into account when making a decision on your behalf.

If you wish to make an advance decision or advance directive, you must do this in writing. Make sure your doctor, nurse, and family know about it. This means they can follow your wishes.

Speak to your partner, family, doctor and nurse about what to include. Your doctor can talk to you about this in more detail, and help you think about the consequences of any decision. You might hear this called a treatment escalation plan (TEP). Whatever you decide, your doctor or nurse will still try to make sure you are comfortable and not in pain.

You can change your advance decision or advance directive at any time. It’s a good idea to read it regularly to make sure it is still what you want.

Read more about how to make an advance decision or directive to refuse treatment from Marie Curie

Support in making decisions

Thinking about your wishes and making decisions can be difficult. You don’t have to make any decisions if you don’t want to. Here are some things that may help.

• Talk to your doctor or nurse so they know your wishes when planning your care. They’ll keep a record of your decisions.
• Talk to your family about what you want, and help them understand your wishes. Let them know if you change your mind.
• Read more about making decisions about your care from Compassion in Dying, Age UK, Marie Curie and the NHS website.
• Read more about making an advance decision on from Compassion in Dying

Appointing someone to make decisions for you

You, your loved ones, and your doctor or nurse will usually make decisions about your care together. But you can choose someone to make decisions for you if you’re unable to – for example, if you are unconscious. This person is known as an attorney, and the legal document is known as a lasting power of attorney.

You can choose one or more people to make decisions for you. They should be someone you trust, like a family member or friend.

Health professionals must respect your wishes about who you would like to make decisions about your care.

If you are a gay or bisexual man and want your same sex partner to make decisions for you, make sure your doctor and family are aware of your wishes.

There are two types of lasting power of attorney.

• A property and financial affairs lasting power of attorney can make decisions about money and property.
• A health and welfare lasting power of attorney can make decisions about your health, personal care and welfare.

Age UK and Compassion in Dying provide information about making a lasting power of attorney. You can find more information and get the forms you need to fill in on GOV.UK