End of life and palliative care at home

If you are living with a life-limiting illness, end of life and palliative care can be provided to you at home. This may include visits from a range of service providers, either occasionally or on a regular basis.

Your needs determine the services you may require, not your diagnosis#

Home may mean the house or apartment you live in. It may also mean a residential care facility, supported accommodation, or a place in a remote community. Many people living with a life-limiting illness prefer to stay at home because of the familiar surroundings, their sense of independence and privacy, and being close to family, friends and the local community.

Receiving care at home can also help people keep a daily routine and feel more secure.

However, not everyone chooses to stay at home for end of life or palliative care. You should not be persuaded to receive home-based care if it is not right for you, or if you do not have enough care and support at home.

You may choose to make this decision together with your family or the people you live with.

If you live alone, you may like to discuss it with your doctor, a trusted health professional or a close friend. The levels of end of life care available can differ depending on where you live. They may include:

• allied health services such as physiotherapy, occupational therapy and podiatry
• music or art therapy, and bereavement support

Palliative care at home is provided by specialist community palliative care services. These services are designed to be flexible and to meet your needs and those of your carers and family. You may want specialist palliative care at home if your condition worsens or becomes complex, or you may choose another option such as a residential care facility, hospital or inpatient service.

The services available can differ depending on where you live. Most specialist community palliative care services offer specialist palliative care, allied health such as physiotherapy, occupational therapy, podiatry and music or art therapy, and other medical specialist support if it is needed.

Speak to your doctor about palliative care providers in your local community#

Specialist palliative care providers offer a range of services, but you may not need all of them. Often one of these specialists becomes the coordinating person you mostly deal with. Many specialist palliative care services offer 24-hour telephone access for advice and support.

In urgent situations, a nurse may be able to visit you at home after hours.

These services can differ from place to place#

While there are many benefits to being cared for at home, staying at home may not always be possible.

There may be times when you need more care than can be given at home, or when those caring for you need a break or can no longer manage your increasing needs.

If your condition worsens, you may need to consider another option such as a residential care facility, hospital or inpatient service.

This may only be temporary, due to occasional flare-ups of a condition or changes in your needs.

A hospital admission may be necessary to manage a difficult symptom.

Often people return home after an episode that requires specialist treatment#

Sometimes these episodes can be managed at home by the community specialist palliative care team.

Your wishes and preferences for care, and for where you want to die, can be documented formally through advance care planning. Advance care planning clarifies the treatments you do or do not want, allows you to appoint a medical treatment decision maker, and gives you and your family peace of mind.

Talking with family and loved ones and letting them know your wishes helps, particularly if you become unable to make your own decisions.

The type of care you receive at home, your ability to stay independent, and the impact your care has on your family may all affect the decisions and preferences you make. Many people decide they would prefer to die at home, where it is familiar and comforting. For some, home may also mean a residential care facility or a remote community.

Many people also choose not to die at home. Both choices are equally valid, and the decision is yours. You may choose to make it together with your family and loved ones, and you can change your mind later.

It may seem desirable to plan to die at home while you are still feeling well, but your thoughts may change as your health and life circumstances change. It is okay to change your preferences. It is a good idea to talk to your family or carer about how you are feeling, and to check in with them to make sure they can cope.

How much support you receive, and the type of care you get from family or friends, will depend on your immediate needs, your family’s availability, and the tasks everyone is comfortable with. You may need to discuss with the people close to you how much support they are able to provide.

Some family carers offer emotional support or help with meals and day-to-day chores, while others are involved in more intimate aspects of palliative care at home, such as personal grooming or bathing.

Your palliative care team can also provide these services. Have an open and honest conversation with your family or carer about what you are both comfortable with, so you can decide together on the best plan for your care. End of life and palliative care staff can help you with these conversations.

The palliative care team is there to support you as well as the people caring for you. Talk to them about what will make your life easier, and talk to your doctor about the emotional and financial support that is available.

End of life care at home can draw on a wide range of healthcare and community providers, and may include:

• district nursing, nursing support and review
• medical support from your doctor
• practical support and assistance, including from formally trained palliative care volunteers
• emotional and spiritual support, or specialist psychological counselling
• information and resources
• complementary therapies such as massage or aromatherapy
• support for family or those caring for you
• access to medical review and assessment in your home
• after-hours palliative care support

There is more information on recording wishes for future care in the section on advance care planning.

Key points#

• Receiving care at home can help people keep a daily routine and feel more secure.
• A hospital admission may be necessary to manage a difficult symptom.
• Often people return home after an episode that requires specialist treatment.

Where to get help#