Providing end of life and palliative care for someone at home

End of life and palliative care services can provide you and your relative with home-based care and support.

Many people choose to be cared for at home#

People who need end of life and palliative care often prefer to stay at home. They know their surroundings and may feel they have more privacy and freedom there.

However, home is not the right choice for everyone, and you should never feel pressured into home-based care if it does not suit you or your loved one. Community palliative care services usually offer home visits, and in many areas they provide telephone support around the clock. Even with these services in place, the demands on a carer at home can still feel overwhelming.

Difficult feelings are normal#

As a carer, there will be times when you feel frustrated, tired, angry or low. This is a normal response to a hard situation. It is important to ask about the help that is available so the burden does not become too much.

What carers at home usually do#

Carers take on different roles depending on what they feel able to do. Some family members or friends like to help with meals, medications and getting their loved one to appointments. Others prefer to offer emotional support by being there to listen and comfort.

Some carers are happy to help with more intimate care, such as personal hygiene, bathing, grooming and skin care. You are not expected to take on any of these tasks unless you feel comfortable doing so. If you are unsure, ask the community palliative care team or your doctor for guidance.

Caring can be demanding#

Looking after someone who needs end of life and palliative care can be physically and emotionally draining. Carers often describe it as a roller coaster of emotional highs and lows. Many say they get little time for themselves, struggle to sleep and feel exhausted or overwhelmed at times. These are all normal reactions.

At the same time, carers frequently talk about the rewards. Some describe being part of a loved one’s final months as a privilege. When things are not going well it can be hard to see the benefits, but many carers find it helps to look for the positive in difficult moments.

Know your rights and options#

It is important to be aware of your rights as a carer. These include being able to make a formal complaint if you are not satisfied with the services provided.

If other family members, friends or a paid carer are also helping, everyone should understand their roles and responsibilities. This helps avoid misunderstandings. It is also a good idea to:

• ask the healthcare team about the support arrangements available
• consider your own health and wellbeing, and seek help when you need it

How much support you receive, and what kind, will depend on your immediate needs, who is available and what tasks everyone feels comfortable doing. A valuable role some carers take on is supporting the main carer, both emotionally and practically. Have an open and honest conversation with family or friends about what you are each comfortable with, so you can agree together on the best plan for your loved one’s care.

Sharing medical information#

A person’s medical history is private, but most of us are happy to share it with people we trust, such as a partner, parent or other close relative.

If you are going to be the main carer, having your relative’s written permission to give and receive information about their medical situation makes everything easier. If this is not already in place, ask your relative to write down who they allow to access their medical information, sign it, and have someone sign as a witness. This makes it much simpler when you need to speak with nurses, doctors and other health professionals about their condition.

For legal questions, ask your healthcare team about planning and decision-making for end of life care.

When to contact the service or doctor#

It helps to write down questions or issues that matter to you. Then ask yourself whether it is something for the palliative care team or for your doctor, how urgent it is, and whether you need an answer during normal business hours or after hours.

If you are unsure, phone the palliative care team and speak to a nurse, who can help decide whether the doctor needs to be involved.

Sometimes more than one doctor or specialist is involved in care. Some doctors are happy to give you an out-of-hours contact number, and some use a locum (a temporary substitute doctor) when the usual doctor is unavailable. It can help to settle a few questions early in your caring role:

• What is the doctor’s availability, especially after hours and at weekends?
• Will the doctor do home visits?
• Which locum does the doctor use when unavailable?
• What experience does the doctor have in end of life and palliative care?

You do not need an emergency to phone the palliative care service or doctor, although after-hours calls are usually reserved for more urgent matters. The service is there to support you, so do not delay in getting advice if something worries you. An early phone call may save you hours of worry. No question is silly — the team is used to hearing every kind of question and will always respond, even if some questions cannot be answered with complete certainty.

Plans can change#

Supporting someone who needs end of life and palliative care can be complex, and different approaches sometimes need to be tried. This is especially true when treatment for another condition is happening at the same time as palliative care. It helps to have a plan of action for the issues that concern you, and it is very common to need to change that plan as things develop, so try not to worry when you do.

Being a carer is demanding, but help is always available. Talk to your palliative care team or your local doctor whenever you need support.

Key points#

• Many people who need end of life and palliative care choose to remain at home.
• Seek advice about the help available so the burden does not become too much.
• Be aware of your rights and options as a carer.
• A valuable role some carers take on is supporting the primary carer.
• Different approaches may be needed, especially when treatment for another condition is active at the same time.