Palliative care places the person at the centre of care. It focuses on quality of life and support for individual physical, emotional, social, and spiritual needs.
The National Palliative Care Strategy and the Australian Charter of Aged Care Rights remind us that that the each person, including someone approaching the end of their life, requires compassion and care that recognises who they are and what matters most to them.
The Australian Commission on Safety and Quality in Health Care defines key dimensions of person-centred care that individuals have a right to expect including:
- emotional support,
- physical comfort,
- information and communication,
- continuity and transition,
- care coordination,
- involvement of carers and family, and
- access to care.
Coordinating Palliative Care
When you are very ill many people including health professionals may be involved in your care. This may mean that you have to tell your story many times to different people.
You can have a serious illness for a long time. You may have difficulty remembering the details of all that has happened. Keeping a health diary can help. Write down the date with what symptoms you are having. Include your medications and what helps. Also put in the dates of appointments and any questions you have. If you keep a diary, then tell everyone involved in your care. Then you won’t always have to tell them your story again.
The management of your care works best when you, your carer and your health professionals are working together. There are ways that this can be organised. Sometimes a case manager will coordinate your care. The palliative care service, community nurse or GP may do this. This can be overlooked though, and things can get confusing.
You may think that this is happening in your case. You or your carer can ask your GP to arrange a case conference or family meeting. This will bring together everyone who is involved to better coordinate your care and understand what is happening. Your carer will often be the main person coordinating your care at home. They need to be involved in anything to do with your care.
Who Provides Palliative Care
Apart from your carer there are many people who provide palliative care.
Some may specialise in palliative care and work full time in that role. Others include palliative care as an ongoing part of their daily work. This includes GPs and aged care nurses.
Each person will have different people involved in their care. This will depend on their individual needs. A palliative care team may include many people who work in health. Some of them are:
Aboriginal and/or Torres Strait Islander Health Workers
Aboriginal and/or Torres Strait Islander Health Workers/Practitioners are a vital part of the health workforce and help obtain better health outcomes for Aboriginal and Torres Strait Islander people. You will find Aboriginal and/or Torres Strait Islander Health Workers and Aboriginal and/or Torres Strait Islander Health Practitioners working in rural, regional, remote and urban locations. They are employed largely by the Aboriginal Community Controlled Health Sector, other Aboriginal Medical Services, mainstream and private health services.
Most people are supported by family and friends when a loved one dies. For some people the loss or grief that follows may be overwhelming. A bereavement counsellor is trained to support people who are experiencing these ongoing feelings. Bereavement counsellors often work with palliative care teams. They may support a patient or their family before the death if that is needed.
Dietitians can help patients with what they are eating and drinking. Thy can develop a plan which focuses on the patients’ needs and wishes. Dietitians also provide education for the patient and family.
You may have a GP, a specialist or other doctors caring for you. You may have known your GP or specialist for a long time. You may have developed close relationships with them. You may also not see the same doctor all the time. When seeing a Doctor it can help to have someone from your family with you. They can help to explain what is happening.
Your illness can affect your family members or carer. They may also have health issues. Your family member may not have the same GP as you do. It is a good idea to allow these health workers to talk to each other. They can help both you and your family member that way.
Music therapists offer music-based opportunities for patients. This can be meaningful for patients. It can also mean sharing enjoyable and memorable times with families and friends.
You can see a nurse in the hospital or in the community. They could be working in palliative care, aged care or veteran affairs and they may be providing different types of care. Sometimes nurses share the care, so there may be more than one nurse for different things. They may leave a file in your home with notes about your care. This is to make sure everyone knows what is happening.
Nurses provide crucial support. Some will provide physical care if it is needed. Others may provide advice and support. They can talk about any medication that you need to take. They are there for you and your family to share feelings and emotions.
Occupational therapists and physiotherapists
Physiotherapists help people to keep moving and to function as well as they can. Occupational therapists look for any changes that may be needed at home. This may include hand rails in the toilet or shower. It could be a temporary ramp for a wheelchair. These aids can all help with your daily life. These changes can help you to stay at home safely. It will also help to support your family in providing care. Physiotherapists and occupational therapists will often work together to help support people at home.
Paramedics are not a part of the palliative care team. But many people will see a paramedic if they need to call an ambulance. They may also be under the care of a paramedic if they are transferred by ambulance. They may assess your pain or symptoms and may provide you with treatment. Paramedics need to be aware if you have an advanced care directive.
Pastoral Care Workers
Pastoral care workers and chaplains provide pastoral and spiritual care for everyone. It doesn’t matter what religion, or none, that they have. Pastoral care workers see patients, their families and health professionals. All will have different spiritual and emotional concerns.
A Chaplain is usually formally qualified. A pastoral care worker in health care will usually have some training. Chaplains and pastoral care workers have often also been trained or had experience in another field (eg, nursing, teaching, social work) before they work in pastoral care.
Pharmacists may be a member of the palliative care team. They may also work in chemists or in hospitals. They often provide helpful information on the effects of the drugs that you are taking. They may come to your home to review your medicines and make sure that you know what you are on. They may talk to your health professionals or to your carer about your medicines.
Psychological care can be given in hospitals and palliative care units. It can also be given in private practices with a referral from a GP. Psychologists look at behaviour, emotions and social factors related to the management of palliative care. This can include non-drug approaches to managing your pain. They can help you and your carer as well as health professionals.
A social worker can help you understand what is happening in the system. They can help you understand any issues that will have to be tackled. This could be emotional, social or practical. Their role is to help you adjust to changes you experience. They can also support family members and others close to you as they adjust to your illness.
Speech pathologists work with the patient and family to help manage any communication and swallowing difficulties. Together, they can help to reduce the impact of symptoms on the patient’s comfort and quality of life. Speech Pathologists can provide education for the patient and family.
Palliative care may also be given by palliative care nurses or doctors in some places. This is called specialist palliative care. These specialists are trained in palliative care. You could be in a hospice or a palliative care ward in a hospital. You could be at home in your community. You may move between these places as your medical and support needs change.
You may or may not need to see a specialist palliative care team. You may only need to see specialist palliative care occasionally. This may be to deal with specific problems or circumstances.
If you live in the country you may not have much access to specialist palliative care. Your GP and health service may be linked to a palliative care service in the city. They can seek specialist advice from them as needed.
Volunteers work with health professionals to help provide emotional and practical help. This can include a range of tasks such as shopping trips, or help with getting to appointments. They can also provide a friendly ear, or make a cup of tea or coffee. Volunteers do not replace a paid worker, they work alongside health professionals.
Other health professionals
- Complementary therapists can help to improve your quality of life
- Case managers are sometimes assigned to help coordinate care.
Page last updated 29 March 2021