What is Palliative Care?

Palliative care addresses the physical, psychosocial and spiritual needs of people with a life-limiting illness, to allow them to live as well and as comfortably as possible.

A progressive or life-limiting illness means an illness that is going to get worse, and which will eventually shorten the person’s life.

Palliative care recognises the unique needs of a person who is approaching and reaching the end of their life, as well as the needs of their family and carers.

Palliative care aims to improve the quality of life for patients, their families and carers by addressing their many needs through spiritual, emotional, social, cultural and physical support, helping the person live as well and as comfortably as possible during the deteriorating phase of their illness through to their death.

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FAQs

Some frequently asked questions about palliative care.

Where can I get palliative care?

This depends on your medical needs, your support network and your local services. Your hospital may have a specialised palliative care ward or unit for people who need a higher level of medical support or assistance.

Many health services offer palliative care through community nursing so that you can stay at home in a familiar environment with more autonomy.

People in residential aged care benefit from a palliative approach as they approach the end of their life.

Wherever you are, ask about what support services are available that could provide additional assistance to you and your family or carers – like volunteers trained in palliative care.

When should I consider palliative care?

Palliative care can be provided to a person from the point of diagnosis of a life limiting illness and throughout its different stages. Palliative care is an approach to care that enables the person to have improved quality of life and actually assists them to live more comfortably. The type of palliative care you receive may vary depending on your changing needs.

Consider accepting a referral to palliative care when you are still reasonably well but you have some needs that require assessment (eg pain or symptoms or needing support at home). This way, you will be able to have better quality of life and feel supported during your illness.

“My first reaction was that we didn’t need palliative care. I feared what this meant. I felt more comfortable when I realised that palliative care was much more than just nursing a dying person – it was about holistic support and understanding, ensuring that my husband could still ‘live’ as best he could in the time he had left. I know my family would not have coped nearly as well physically and emotionally without it” (Carer)

Who is palliative care for?

Palliative care can be provided to a person who has a progressive, life limiting illness. Palliative care is not just for people who have advanced cancer. It can also be provided to be people with (but not limited to) end stage heart, lung or kidney disease, neurological conditions and end stage dementia.

The way palliative care is provided and who provides it depends on the person’s needs. As the person’s condition starts to change and their needs increase, the earlier a person can receive a palliative care approach to their care, the better their quality of life and symptoms may be.

Does being involved in palliative care mean that I will die soon?

No it doesn’t. Many people think that palliative care is only about care that is provided in the last days of life (terminal phase), but that is a myth. Palliative care in the last days of life is only one part of palliative care, but an obviously important part.

What kind of care is available?

The type of care that is available will depend on your needs, the needs of your carer, and what services are provided in your area. Palliative care can include (but is not limited to) medical, nursing or allied health services to manage your changing health needs. This may include pain and symptom management, medication management, counselling and support services, equipment provision, referrals to other services for personal care and home care services, respite care, volunteer services and bereavement support.

What is specialist palliative care?

Palliative care can be provided by a number of different health professionals, depending on the needs of the person. Most people receiving palliative care will be cared for by their General Practitioner and community nurses or residential aged care staff. This is called a palliative care approach.

A small number of people experience more complex problems as their condition advances. These people may be referred to a specialist palliative care service where a team of specialist professionals will work together to address these concerns.

Can I still have active treatment for my illness?

A person receiving palliative care for advanced cancer may wish to continue their current treatments such as chemotherapy or radiotherapy if their specialist recommends it for pain or symptom management. It is important to have an open discussion with your treating doctor about the goals of the treatment, as the goal of treatment will have changed from trying to cure the disease to relieving symptoms. This is called palliative chemotherapy or palliative radiotherapy.

Alternatively, after discussion with your treating specialist and your family, you may decide not to continue with these treatments.

Who provides care?

Palliative care can be provided by a number of different health professionals, depending on the needs of the person. Most people receiving palliative care will be cared for by their General Practitioner and community nurses or residential aged care staff.  This is called a palliative care approach.

However, if a person’s symptoms or needs are more complex, they can be referred to a specialist palliative care service where a team of specialist professionals will work together to address these needs. Alternatively, the patient’s General Practitioner may seek advice from a specialist palliative care service on the patient’s behalf.

Depending on the person’s needs and the services that are available, a care team may include:

  • General Practitioners
  • specialist palliative care doctors and nurses
  • specialist doctors – oncologists, cardiologists, neurologists, respiratory physicians
  • nurses
  • allied health professionals – pharmacists, occupational therapists, physiotherapists
  • social workers
  • psychologists
  • grief and bereavement counsellors
  • pastoral care workers
  • trained volunteers
Who should I talk to about palliative care?

You can talk about palliative care and your needs with your doctor or contact your local health care service or hospital to find out what palliative care services are available in your area.

Who should I talk to about palliative care?

You can talk about palliative care and your needs with your doctor or contact your local health care service or hospital to find out what palliative care services are available in your area.

Where can I receive care?

Palliative Care can be provided in any setting. This can be in the person’s home, hospital, hospice or a residential aged care facility.

Many people prefer to receive care at home, but this will depend on many factors, including:

  • the nature of the illness
  • if the person has someone who can care for them
  • how much support is available from the person’s family and community
  • what community services are available

Wherever you are, ask about what support services are available that could provide additional assistance to you and your family or carers.

If I am in pain or am bothered by other symptoms, how will they be relieved?

Not everyone will experience pain. Various illnesses cause various symptoms, or none at all.  If you do experience pain or are distressed by symptoms, it is important to tell your health care team so they can do a thorough assessment to determine the best way to manage this pain. There are numerous medication or non-medication measures that can be used to treat pain or symptoms from your disease. Finding the right management plan for you is part of the expertise of the palliative care team.

Some complementary therapies, such as massage, acupuncture, aromatherapy or meditation can also be helpful in relieving pain or symptoms. Speak to your team about this if you would like more information.

What is Advance Care Planning?

Advance Care Planning is the process of ensuring that you have thought about, then talked about (with your carer, family, doctor or your health care) and then documented your health care wishes, in the event that you may not be able to speak for yourself or make decisions as your condition changes. This is to ensure that you are receiving the type of care that you want based on your values and goals, and not the type of care that you don’t want. It is important to talk about whether you want resuscitation (CPR), or invasive treatments such as feeding tubes, or other treatments that may not be beneficial to you and not add to your quality of life.

Talk to your doctor or nurse about your care wishes. You can also refer to the brochure Advance Care Planning: Decision making for the end of life. This explains the process of making sure your care wishes are discussed and documented if you become too unwell to make decisions for yourself.

What can you tell me about paediatric palliative care?

Paediatric palliative care is available to families who have a child with a life-limiting illness, as well as the people who support them.

It enables the baby, child or young adult to live in an environment where curative treatment can be part of their life, but not the entire focus and aims to provide the best quality of life. Using a holistic approach, paediatric palliative care supports the physical, emotional, social and spiritual aspects of the child and their family.

Palliative Care Australia has a fantastic resource available for both carers and health professionals that deals with paediatric palliative care. Click here for access.

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