Palliative care

Saturday 1 April, 2017

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On this page: The role of palliative care | Palliative care providers | Palliative care services | Does palliative care mean end-of-life care? | Is palliative care the same as euthanasia? | Does it shorten or lengthen life? | When can I start palliative care? | Who will coordinate my care? | Where will I receive palliative care? | Can I still have cancer treatment? | Will I lose my independence? | Do I have to pay for palliative care? | How can palliative care help?


The role of palliative care

Palliative care helps people with advanced cancer to live as fully and as comfortably as possible. The role of palliative care is to:

  • identify and help you manage your physical, practical, emotional, spiritual and social needs
  • help you achieve the best quality of life that you can for as long as possible
  • help you feel in control of your situation and make decisions about your treatment and ongoing care
  • provide support to families and carers.

This type of care can improve quality of life from the time of diagnosis, and can be given alongside other cancer treatments.

Palliative care involves a range of services offered by medical, nursing and allied health professionals, as well as volunteers and carers. This is called a multidisciplinary team (MDT) approach. Your care may be coordinated by your general practitioner (GP) or community nurse, or by the specialist palliative care team in your area. It may be provided in or out of the home.

Palliative care providers

Where possible, you and your family can choose where you want to receive palliative care. This may be:

  • at home (with support from community palliative care services and your GP)
  • at a specialist palliative care unit (sometimes called a hospice)
  • in a hospital
  • in a residential aged care facility.

Specialist palliative care services see people with the most complex needs, but can also provide advice to other health care professionals. These services can be accessed through:

  • many public and private hospitals (either as an inpatient or through an outpatient clinic)
  • palliative care units (hospices)
  • community-based specialist services.

If you think you need specialist palliative care, talk to your GP or oncologist about a referral to the service in your area.

Palliative care services

Services will be tailored to your individual needs, but may include:

  • relief of pain and other symptoms (e.g. nausea, vomiting)
  • equipment to aid care at home, such as wheelchairs or special beds
  • assistance for families to talk about sensitive or complex issues
  • links to other services such as home help and financial support
  • support for people to meet cultural obligations
  • counselling and grief support
  • support for emotional, social and spiritual concerns
  • referrals to respite care services.

Services offered in each state and territory vary. To find out what is available in your area, speak to your health care providers, contact your local palliative care organisation, use the directory of services at palliativecare.org.au or call Cancer Council 13 11 20.

What is palliative care?

Palliative care addresses the needs of people with a life-limiting illness in a holistic way. It provides individualised care to improve your quality of life and make the time you have as valuable as it can be for you and your family.

Person with cancer

You will work with the palliative care team to communicate your care needs and decisions about treatment and ongoing care.

Care settings

The palliative care team will help you determine the best place for your care. This may be at home supported by community palliative care services, in hospital, at a residential aged care facility or in a palliative care unit (hospice).

When to start

Palliative care is useful at all stages of advanced cancer and can be provided alongside active treatment for cancer. Starting palliative treatment from the time of diagnosis can help improve your quality of life.

Care providers

Your care may be led by a specialist palliative care team or by your GP and a community nurse. They will be supported by a team of people with different skills to help you with a range of issues.

Family and carers

The palliative care team will involve your family and carers in decisions about care, and provide them with emotional support, including access to counselling and grief support.

Advance care planning

The team will encourage and support you to make decisions about your goals and preferences for future care and treatment.

Support services

Team members will help you work out how to live your days in the most satisfying way you can – this might mean enjoying time with family and friends, recording your memories or reflecting on your life. They can also refer you to organisations and services that can assist with financial, emotional and practical needs.

Equipment

If you want to remain at home, team members can help identify and organise equipment and services to make it easier for carers to look after you.

Symptom relief

Palliative treatment can help you manage any symptoms, such as pain, shortness of breath or fatigue.

Does palliative care mean end-of-life care?

Palliative care aims to provide quality care and quality of life for someone living with a life-limiting illness. It is about living for as long as possible in a way that is meaningful to you, within the constraints of your illness. It's not simply about dying.

While some people may use palliative care services for only a few weeks or months, the number of people receiving palliative care for several years is increasing.

Because improved treatments can help stop or slow the spread of cancer and relieve side effects, cancer may be considered a chronic (long-lasting) disease. You can have palliative care while you are still having active treatment for the cancer. You do not need to wait until you have stopped active treatment or until the end of life.

This type of care can improve quality of life from the time of diagnosis. One reason that some people don't access palliative care services early – or at all – is because they have the fear or misconception that it will mean they have given up hope or are going to die soon. This is certainly not the case for everyone referred to palliative care, nor does it mean that your doctor has given up hope.

The reality is that some people do die from cancer. As people draw closer to death, the end-of-life aspect of palliative care becomes important.

"There is still a life to be lived and pleasures to be found and disappointments to be had. Living with advanced cancer is a different life, not just a journey towards death." – Julie

Is palliative care the same as euthanasia?

Palliative care and euthanasia are not the same thing. Euthanasia is the act of deliberately ending the life of a person with an incurable condition or illness. Physicianassisted suicide is when a person ends their own life with the help of a doctor.

In early 2017 both euthanasia and physician-assisted suicide were illegal for all parties involved in every state and territory in Australia. Although the laws are under review in some places (visit end-of-life.qut.edu.au for updates), euthanasia and physician-assisted suicide are not part of palliative care practice.

The coordinated medical and support services of palliative care can help a person maintain comfort and quality of life throughout the advanced stages of their illness. Palliative care does not attempt to hasten death.

If you urgently need somebody to talk to because you are thinking about ending your life, call Lifeline on 13 11 14 for free, confidential telephone counselling at any time.

Does it shorten or lengthen life?

Palliative care does not try to end life sooner, nor does it try to prolong life. Instead, the palliative care team provides services to enhance your quality of life. This may include managing pain and other symptoms. Some studies show that controlling symptoms, such as pain, can lead to people feeling better and living longer.

When can I start palliative care?

Once you know your cancer is advanced, it is a good idea to start exploring the options provided by palliative care. Talk to your doctor about a referral to palliative care services. You can find out what the different team members do and which services might be relevant now or in the future.

Sorting out care earlier rather than later will reduce stress on you and your family. It will allow time to better understand and manage any physical symptoms (such as pain or nausea), and to consider your practical, emotional and spiritual needs.

Some people live comfortably for months or years after a diagnosis of advanced cancer; they can be supported by palliative care services as needed throughout this time. For others, the cancer advances rapidly so that their care is focused on end-of-life needs soon after their referral to a palliative care service. Whatever stage you're at, your palliative care team will continually assess your changing needs and adjust your care.

Who will coordinate my care?

In most cases, a GP or community nurse will coordinate your palliative care. If your care needs increase beyond their area of expertise, they will seek advice and support from a specialist palliative care service. It is likely that your GP or community nurse will continue to coordinate your care, and you may not need to see the specialist yourself.

Specialist palliative care services may coordinate the care of people with complex health needs, who will often see the palliative care specialist regularly as an outpatient. Sometimes people need to stay in hospital for short periods while the specialist adjusts their medicines or gets their pain under control, for instance.

The palliative care specialists will continue to consult your other doctors about your care and treatment. If your condition stabilises or improves, you may not need to see the palliative care specialists for periods of time or you may be discharged from palliative care.

It is important for your key family members or carers to be involved in any discussions about your treatment plan, especially if they are providing most of your day-to-day care.

"Working in palliative care allows us, as nurses, to provide patients with the most compassionate care possible at a time when they may be quite vulnerable." – Carla

Where will I receive palliative care?

You can have palliative care in different settings depending on your situation, where you live, and whether you have family or friends who can help. In many cases, you and your family can choose where you want to receive palliative care. This may be at home or in a residential aged care facility, or in a hospital or palliative care unit (hospice). People receiving palliative care often move between these settings as their needs change.

An important role for the palliative care team is to assess the best place for your care. Many people prefer to receive care at home. The team will respect your wishes where possible. They will consider your home environment, your support networks, and what organisations and individuals are available in your area to help you, and then discuss the possibilities with you, your family and carers.

If you are cared for at home, you (and anyone who cares for you) can be supported by community-based palliative care services. You can decide at any stage to change your mind about staying at home and explore other options.

Depending on your situation, it may not always be possible to stay at home, even with home help. Hospitals and palliative care units are designed for short-term stays. If you cannot return home and require care for several months or more, the palliative care team will talk to you and your carers about options for your ongoing care.

Can I still have cancer treatment?

You can still have active treatment to shrink or stop the cancer growing while receiving palliative care. The palliative care team will work with your cancer specialists to manage side effects from treatment and help maintain your quality of life. Cancer treatments such as surgery, chemotherapy, immunotherapy, targeted therapy and radiotherapy may also be used as part of palliative treatment. In this case, the aim is not to control the cancer but to relieve symptoms.

Finding hope

Some people avoid palliative care because they hope that a cure will be found for their cancer. However, palliative care does not mean giving up hope. You may find that you focus your hopes on the things that are most important to you, e.g. feeling valued, having meaningful relationships or receiving effective pain relief.

People can have palliative care for several months or years, sometimes alongside active treatment for the cancer. During this time, you can continue to enjoy many aspects of your life.

Some people with advanced cancer take pleasure in completing projects, spending time with friends, or exploring new hobbies. Others find that recording their feelings through a creative activity, such as writing or art, helps them to make sense of their situation.

As the disease progresses, your goals may change. For example, you might hope to live as comfortably as you can for as long as possible or you may have some unfinished business to complete. Palliative care can help you achieve this.

Sexuality and palliative care

People with advanced cancer usually experience major physical and psychological changes. These can have an enormous impact on how they feel sexually, but do not mean that intimacy needs to end.

We are all sexual beings, and intimacy can provide comfort and maintain connection. Even if sexual intercourse is no longer possible or desired, you may gain physical closeness through cuddling, stroking or massage.

Talk with your partner about your feelings and concerns about the sexual changes in your relationship, and ways to maintain intimacy.

If you have concerns about sexual intimacy, talk to your GP, nurse or therapist. See Sexuality, Intimacy and Cancer or call Cancer Council 13 11 20.

Will I lose my independence?

Your palliative care team will give you options to help you remain independent for as long as possible. For example, they may identify modifications or services to help you stay at home (such as installing a ramp so you don't have to use steps), or offer equipment to help conserve your energy (such as a walking frame).

For many people, maintaining control over day-to-day decisions is important – the team will respect your wishes if you don't want to take up their suggestions.

Do I have to pay for palliative care?

The federal, state and territory governments fund core palliative care services so that they are free in the public health system, whether you receive care at home or in a public setting. However, sometimes you may need to contribute to the costs of care.

Your state or territory palliative care organisation will be able to provide you with more specific information, but some examples of additional costs are:

  • hiring specialised equipment for use at home
  • paying for medicines
  • paying for your own nursing staff if you choose to stay at home and require 24-hour assistance
  • paying an excess if you have health insurance that covers
  • palliative care and you go to a private hospital
  • accessing respite services that charge a fee
  • paying the fee of a private allied health professional, such as a psychologist, that isn't fully covered by Medicare
  • paying for complementary therapies, such as massage therapy and acupuncture.

If you are admitted to a public hospital, palliative care unit or other facility and you have private health insurance, contact your health fund to check what is covered. Talk to your social worker about what other financial assistance is available for patients and carers from Centrelink and other organisations in your area.

How can palliative care help?

The palliative care team is there to help make life easier for you, your family and carers in a variety of ways, including:

  • If you're living at home, the team can call or visit regularly.
  • This can reduce feelings of isolation and fear, help your carers look after you, and keep you out of hospital.
  • The team can help dispel any myths and misconceptions about advanced cancer you or your family and carers have.
  • Your care is usually coordinated by one person who communicates with the team on your behalf.
  • The team can help you to make treatment decisions and to prepare for the changes that advanced cancer brings.
  • Adjustments around the house can make things easier and safer for you, your family and carers. The team can help you identify suitable equipment and aids (e.g. a shower chair).
  • The team can assist you with planning for the future, such as thinking about the type of care you may need and where you would prefer to receive care.
  • Your palliative care service may offer a number you can call for advice in an emergency at any time of day or night.
  • The team can provide emotional support – a social worker, counsellor or psychologist can help you work out your goals and how to achieve them. These goals may be specific end-of-life wishes, but can also simply involve getting the most out of each day (e.g. enjoying time with friends and family).
  • The social worker or counsellor can help you and your family deal with loss or grief. Counselling can be worthwhile to help you deal with the changes advanced cancer brings.

Reviewed by: Dr Jan Maree Davis, Area Director, Palliative Care Services, South Eastern Sydney Local Health District Southern Sector, and Conjoint Lecturer, University of New South Wales, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Julie Butterfield, Consumer; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Amanda Maple, 13 11 20 Consultant, Cancer Council SA; Eileen McNally, Palliative Care Psychosocial Lead, Canberra Hospital, ACT; Patricia Pannell, Clinical Nurse, Central Adelaide Palliative Care Service, SA.

Updated: 01 Apr, 2017