End of life and palliative care for people living with a disability

End of life and palliative care is for people who have a life-limiting or life-threatening illness. It focuses on managing symptoms and providing comfort and support. This includes help with emotional and mental health, as well as spiritual and social needs.

This kind of care also gives practical help with everyday tasks. The aim is to improve your quality of life and the wellbeing of your family, friends and carers. Care is based on what you need, not on your diagnosis.

Choosing where to receive care#

If you have been diagnosed with a life-limiting illness, you or your guardian can think about the different options available. You may want to talk these over with your doctor, your family or the staff where you live. Care can be provided in your own home, in a specialist inpatient palliative care unit (sometimes called a hospice), or in a hospital.

Depending on where you live, an outpatient clinic or day hospice may also be available. Deciding whether to stay at home or move into an inpatient unit or hospital is not always easy, so it helps to talk through the different possibilities.

If your condition gets worse, or your family, friends or support staff are no longer able to care for you, you may need to consider inpatient care.

Care at home#

If you are living with a life-limiting illness as well as a disability, end of life and palliative care can be provided in your home. This may include visits from a range of service providers, either occasionally or regularly. Your needs determine the services you receive, not your diagnosis.

Not everyone chooses to remain at home, and you should never be persuaded to stay at home if it is not right for you or if you do not have enough care and support there. You may make this decision together with your guardian, your family or the people you live with. If you live alone, you may prefer to discuss it with your doctor, a trusted health professional or a close friend. The level of services available may depend on where you live.

Care at home can include:

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

Even with good support at home, there may be times when you need more care than can be given there, and you may decide to move into residential or inpatient care. If your condition fluctuates, gets worse or becomes complex, you may need care in a hospital or an inpatient specialist palliative care unit. The nearest unit may be based in a local hospital. Often you can return home after a period of inpatient care.

Care in specialist disability accommodation#

If you live in a group home or specialist disability accommodation, the support staff may be able to provide some or all of your end of life care. You can also have the palliative care services listed above brought to you there, including visits from a range of providers. Again, your needs determine the services you receive, not your diagnosis.

Staying in a familiar setting can be a good option if you have thought through issues such as:

• what will happen if your condition gets worse or you are close to dying
• whether your care needs can be met by the staff who know you

It is important to talk with your support provider and staff about your care needs when making this decision. If your condition worsens or becomes more complex, you may need to think about moving to a residential care facility or an inpatient palliative care unit. If staff find it difficult to manage your symptoms and keep you comfortable, you or your guardian may choose to move to an inpatient unit. It is always okay to change your mind about the care that is best for you, and it helps to talk it over with your doctor, family, friends, a trusted health professional or support staff.

Care in a residential care facility#

If you move into a residential care facility, you can receive the longer-term care you need alongside support for your end of life needs. The facility can also involve the local community palliative care service to provide specialist care or advice. Entry to residential care usually requires an assessment of your needs.

If you are younger and living with a disability, moving into a residential aged care facility should only happen if all other care options have been fully explored and found unsuitable. Where this is the only option, an individual approach should be used, with regular review of your support needs.

Care in a hospital or inpatient unit#

You may need care at an inpatient palliative care unit or hospital for one or more reasons: symptom management, complex needs, respite, or care as the end of life approaches. Inpatient units (sometimes called hospices) are often part of a hospital but are designed to feel as homely as possible.

You are always free to bring in items from home to make your stay more comfortable. Most units offer single rooms, but this is not guaranteed, so ask the staff about the options available.

Planning ahead#

Planning ahead helps you and the people close to you make the most of the services that exist to support you. It is a good time to reflect on what matters to you and to make arrangements that suit you. It also helps your family, friends and those important to you to be included in these discussions.

One way to record your wishes is to write an advance care plan. This is the process of making your care and medical treatment preferences known in case you are ever unable to make those decisions yourself. It helps your guardian, family, friends and treating team understand in advance the level and quality of life you would want if your illness or disability means you can no longer take part in these discussions.

You and your guardian can talk with those close to you, including your doctor and treating team, so that everyone is aware of what is important to you. Depending on your illness, you may also need the help of a guardian or a person appointed to make medical treatment decisions on your behalf if you are no longer able to. Setting this up in advance means your views and preferences are more likely to be respected and followed.

Key points#

• The focus of this care is managing symptoms and providing comfort and assistance.
• Not everyone chooses to remain at home for end of life or palliative care, and that choice should be yours.
• It is important to speak to your support provider and staff about your care needs when making this decision.
• This is a good time to reflect on the things that are important to you and to make arrangements that suit you.
• It is a good idea for your family, friends or those important to you to be included in these discussions.

Where to get help#