Thinking and planning ahead

You might be thinking about how and where you will be cared for as you approach the end of your life. This can make you feel more prepared and more confident about making decisions. And it can help you get the support you need. Planning ahead can also make things easier for your family and friends.

It can be difficult to think about these things. Some men prefer to focus on the time they have left and may not want to think about or plan for their death. Thinking about dying can make it seem more real. And it can be difficult to talk about these things. Some men worry about upsetting their family and friends. Everyone reacts differently and there’s no right or wrong way to feel.

What care will I receive?

What is palliative care?

If you have advanced prostate cancer, you may hear the term palliative care. It's sometimes called supportive care. Palliative care aims to manage pain and other symptoms. It aims to provide emotional, physical, practical and spiritual support. It also provides support for your family and for people looking after you.

Palliative care can be provided at any stage of advanced prostate cancer. It isn’t just for men in their final weeks and days, although it does include end of life care. Men with advanced prostate cancer might receive palliative care for many months or years.

Palliative care may include:

treating and managing pain and other symptoms
talking about how you’re feeling and finding ways to cope
relaxation services, such as massage or aromatherapy
social groups to help you enjoy life and not feel isolated
help getting the financial and practical support you need
support for your family and other people looking after you.

You might get this care in a hospice, hospital, care home, or your own home. Where you get this care will depend on what you need, what you prefer, and the services in your local area.

Even if you don’t need any support at the moment, it can help to know what support is available. You can get an assessment to see what support might be suitable or available for you, now or in the future.

At the end of life

You and your family should get high-quality care and support as you approach the end of your life. This care includes things like managing pain and making sure you are comfortable. You should be cared for with respect and dignity.

You should be seen regularly by a doctor. They will look at your medicines and your care, and may suggest changes based on what you need. You and your doctor should create a plan so that you know what to expect. You might hear this called an Advance Care Plan. You can tell them about the care and support you and your family need and want.

If your doctor thinks you will die very soon, they will explain this to you and the people close to you. Some people don’t want to know if they are about to die. Talk to your doctor or nurse about what you want to be told.

There isn’t a specific point in time when a doctor should refer someone for end of life care. This varies from man to man and will depend on what support you and your loved ones need.

Make sure you ask your doctor or nurse if you have any worries or questions about your care. Or speak to our Specialist Nurses.

Getting access to care

Your GP can refer you for palliative care and end of life care. Even if your doctor or nurse doesn’t bring this up, you can still ask them about it. They can explain the services in your area and what support might be suitable.

Some men don’t want to be referred for palliative care as they think it's just for people in their final weeks and days. But having palliative care will help you get the right support for you and your family.

If you’re a family member or friend of someone with advanced prostate cancer, you can also get palliative care support. Your GP can refer you for support even if your loved one doesn’t want to be referred.

Talk to your GP about getting palliative or end of life care or find services in your area on the Dying Matters website. Or you can speak to our Specialist Nurses.

Where will I be cared for?

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. 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.

Getting help at home

If you want to stay at home, your GP and district nurse will 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.

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.

Who will be involved in my care?

Most of your care will be provided by your GP or a community nurse, unless you go into a hospital or a hospice. They will work with other health professionals to co-ordinate your care and offer you support and advice. They can also refer you to local services. They can visit you in your home and help support your family.

A range of different professionals might help manage your symptoms and offer emotional and practical support. Some may have been treating you since your diagnosis. Others provide specific services or specialise in palliative care.

Who is looking after you will depend on your own needs and the services in your local area.

Clinical nurse specialists (CNS) specialise in caring for men with prostate cancer. They may be the health professional you've seen the most during your treatment. They provide care and offer advice on managing prostate cancer and side effects. They also provide emotional support.

Urologists and oncologists treat prostate cancer and will be in your multi-disciplinary team. They can both treat prostate cancer with hormone therapy. A urologist is a surgeon who specialises in conditions affecting the urinary system, including the prostate. An oncologist is a doctor who specialises in cancer treatments other than surgery, such as radiotherapy or chemotherapy.

Palliative care teams include specialist doctors and nurses who provide treatment to manage pain and other symptoms of advanced cancer. They also provide emotional, physical, practical and spiritual support for you and your family. They work in hospitals and hospices, but they might be able to visit you at home. Your hospital doctor, nurse or GP can refer you to a palliative care team.

Community nurses care for you in your own home or in a nursing home or hospice. You might hear them called Macmillan nurses, Marie Curie nurses, community palliative care nurses or hospice nurses. They all do the same work.

Palliative care nurses are part of your palliative care team. You might hear your palliative care nurse called a Macmillan nurse. But not all palliative care nurses are Macmillan nurses. And Macmillan nurses aren’t always palliative care nurses. This will depend on your local services.
Marie Curie nurses provide nursing care to people in the last few months or weeks of life. They visit people at home and often provide care overnight. They also offer practical advice and emotional support to you and your family. They help to give partners and family members a break so that they are able to rest. Your district nurse can arrange a Marie Curie nurse for you. Services vary depending on where you live. In some areas, a hospice may provide this care rather than Marie Curie nurses.

Family support teams offer support to you and your family, including any children you have. Many hospices or palliative care services provide support for family and friends.

Physiotherapists can help with mobility and provide exercises to help improve fitness or ease pain. This can help you stay independent for longer.

Counsellors or psychotherapists can help you and your family to talk about and work through any difficult feelings and concerns. They can help you find ways of coping.

Dietitians can provide advice about eating and drinking if you are losing weight or having problems eating.

Social workers can give you advice about practical issues such as arranging for someone to support you at home.

Occupational therapists can provide advice and access to equipment and adaptations to help with daily life – for example, help with dressing, eating, bathing or using the stairs. Your social services department or your GP should be able to arrange for an occupational therapist to visit you.

Social services provide local support services. What’s available varies from place to place, but can include practical and financial advice and access to emotional support. Your GP might be able to refer you to some services, and some may be linked to hospital departments. You can also contact your local social services department yourself. Find the contact details of your local social services department on the Directgov website.

Your family and friends may also be involved in caring for you. Read more about supporting someone who is dying from prostate cancer.

Making decisions about my future care

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. It can help to make sure you get the care you want. And it can take the pressure off your family or friends.

Writing down my wishes

An advance statement is a general statement about anything about your health that is important to you. It can include:

your wishes 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
where you would prefer to die.

Your doctor will take your advance statement into account when making any decision on your behalf. But an advance statement isn’t legally binding, and it might not always be possible for them to follow your wishes.

Deciding not to have certain treatments

An advance decision or advance directive to refuse treatment (ADRT) allows you to record any treatments you don’t want to have in certain circumstances. It’s 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 might want to think about whether there are any treatments you wouldn’t want to have in certain circumstances. Speak to your doctor and loved ones about what to include. Your doctor can talk to you about this in more detail, and help you think about the impact 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.

If you make an advance decision or advance directive, make sure your doctor, nurse, and family know about it. This means they can follow your wishes.

Read more about how to make an advance decision or directive to refuse treatment on the Marie Curie website.

Appointing someone to make decisions on my behalf

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 on your behalf 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.

Read more information about lasting power of attorney and get the forms you need to fill in on the GOV.UK website.

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 on the Marie Curie website.
Read more about making an advance decision on the Compassion in Dying website.

Practical things

Getting financial support

You may be able to get financial support to help with your medical and personal care. Financial support may include:

access to benefits
carer’s allowance for someone who is looking after you
free prescriptions
grants from charities or other organisations
help sorting out your bank accounts or pension
bereavement allowance for your husband, partner or wife.

You can also apply for end of life benefits. You might hear these called Personal Independence Payment (PIP), Disability Living Allowance (DLA), or Attendance Allowance (AA). Anyone who isn’t expected to live longer than six months can apply. If you're not sure whether this applies to you, you could ask your doctor or nurse. It doesn’t matter how much money you or your family earn or have in savings.

Speak to your doctor, nurse or social worker about how to apply for benefits and grants. Or find out more from Macmillan Cancer Support.

Sorting out practical things

You could give your family access to financial and practical information they will need in the future. For example, information about bills and outgoing payments, your life insurance details or bank account information. Putting this information in one place can make things easier for your family in the future. It can also give you something to focus on.

Making a Will

By making a Will you can decide who will get your money, possessions and property after you die. If you die without making a Will, the government will decide who gets these things. You don’t need a solicitor to make a Will. But using a solicitor can make sure your Will is made properly.

Read more about making a Will on the Macmillan Cancer Support website.

Making a funeral plan

You might want to make decisions or arrangements for your own funeral. This could be whether you want to be buried or cremated, what music or readings to have, who you’d like to invite, and whether it is religious. Some people take comfort in making these plans. But other people prefer not to think about it.

If you do want to think about your funeral, you could discuss your wishes with your family, or write them down. Some people include instructions for their funeral in their Will.

Read more about planning a funeral on the GOV.UK website or on the Macmillan Cancer Support website.

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References

Updated: April 2016 | Due for Review: April 2018

List of references
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