When most people hear the term ‘palliative care’ they immediately think end of life. However this isn’t entirely accurate. The term palliative actually means reducing the severity or intensity of an illness.
This information, written by Elise Button (RN, PhD Nurse Researcher, Cancer Care Services, Royal Brisbane and Women’s Hospital) and Allison Lovell (BN MHM FCHSM, Project Manager for Care at the End of Life, Royal Brisbane and Women’s Hospital), help to debunk some of the common myths surrounding palliative care and bring clarity to the place palliative care has in the treatment plan for those living with blood cancers.
Palliative care is not end of life care. Palliative care is actually not about dying; rather it is about living as well as possible with a serious illness. While palliative care is often provided at the end of life it can also be provided at any time for a person with a life-threatening illness. The aim of palliative care is to help people with a life-threatening illness and their family to live as well as possible within the limitations of their illness.
Palliative care misconceptions
Some people think palliative care is only used at the very end of life.
The goal of palliative care is to help people feel better, manage their illness, and still enjoy life. It also supports families to cope. While often provided at the end of life, palliative care can also be provided at any time for a person with a life-limiting illness.
Palliative care is about helping people feel better:
- Physically
- Emotionally
- Mentally
People with blood cancer can experience fluctuating levels of health and can get sick quickly. This is why introducing palliative care early is helpful.
It gives people time to:
- Plan
- Ask questions
- Learn what help is available
- Make decisions about their care
Being referred to palliative care services does not automatically mean the doctors thinks the person is going to die soon.
Many people are referred when they have troubling symptoms or when they are first diagnosed with a life-limiting illness. Being referred early means they’re able to receive the best support for their individual needs.
Palliative care does not mean stopping all treatment.
It can be given at the same time as treatments that try to control or slow the illness, like chemotherapy, radiotherapy and surgery. People may still have tests, antibiotics and other treatments.
What is palliative care?
Palliative care aims to make life better by helping people with symptoms and other problems from illness or treatment. Pain relief is a big part of this care. The team also supports families and carers with practical and emotional help.
Palliative care for people with blood cancer is tailored to their own needs and wishes.
Their family and carers are also supported. Palliative care treatments are managed carefully by your health care team to relieve pain and discomfort. Receiving palliative care and medications like morphine are used to ease pain and make people more comfortable, they do not speed up death.
Practical and emotional support
Practical support
Palliative care provides guidance on practical matters like mobility aids, medication management, assistance with daily activities, and meeting nutritional needs. The palliative care team can offer advice and refer to other support services that help with physical care.
Emotional support
Feelings of fear, sadness, stress, or frustration are common for people who are very sick and their families. The palliative care team provides a safe place to talk and help people find ways to cope. If needed, they can also connect people with counsellors or mental health support.
The team can help families understand how their loved one might be feeling. They also give advice on how to support them.
Spiritual care
Palliative care includes spiritual care, which means helping people with questions about meaning, belief, and hope. This care can be religious or non-religious. Chaplains or spiritual care workers are there to talk or listen. They can pray, share stories, or just sit quietly with the person.
Some people may want visits from faith leaders or to follow important rituals. Others might find comfort in music, photos, or nature. The care team helps each person with their individual needs.
Cultural support
Palliative care also respects a person’s culture, beliefs, and background. The care team will ask about any customs or traditions that are important. This might include food choices, clothing, language needs, or end-of-life rituals.
If the person does not speak English, a professional interpreter can be arranged. This ensures everyone understands and feels respected. The team aims to provide care that is thoughtful and right for each person and family.
Who provides palliative care?
Palliative care is provided by a team of health workers trained to care for people with a serious illness. This team can include doctors, nurses, social workers, and psychologists. They work together to manage symptoms, give emotional support, and help improve quality of life.
For people with blood cancer, palliative care can be provided with haematologists, general practitioners (GP), and the wider healthcare team. Depending on the person’s needs and family support they may have community nurses assist with their care.
Where can palliative care be provided?
Palliative care can be given in different places, depending on what suits the person best. It may be given at home, in hospital, at an outpatient clinic, in a palliative care unit or hospice, or in an aged care home.
The place where care is given depends on how the person is feeling, their physical function, what supports they have, and what services are available in their area.
More information
If you have any questions related to palliative care and palliative care treatments, or want to know about the services that are available, contact one of our Leukaemia Foundation Healthcare Professionals on 1800 620 420. Alternatively talk to your haematologist or general practitioner.
You can also search the National Palliative Care Service Directory to find a service in your area at palliativecare.org.au.
- What is palliative care? | Australian Government Department of Health, Disability and Ageing
- Palliative care – emotional, spiritual and cultural care | Better Health Channel
- Palliative care | Cancer in Aboriginal and Torres Strait Islander People – Our mob and cancer
- Aboriginal and Torres Strait Islander Palliative Care Resources – Palliative Care New South Wales
- Non-English Language Palliative Care Resources – Palliative Care New South Wales
- End of life and palliative care for children, teenagers and young adults | Better Health Channel
- Palliative Care and Cancer | Help and Advice | Canteen Australia
- Paediatric Palliative Care
- Palliative Care Victoria – Palliative care and the LGBTIQA+* Community
- Palliative Care Australia
- Palliative care it’s more than you think
- Palliative Care New South Wales | Resources for Families and Carers
- Caring for the dying person – CarerHelp Knowledge
References
- To Accompany, Always: Psychological Elements of Palliative Care for the Dying Patient – PMC
- ‘Start end of life care earlier for blood cancer’: haematologist
- Call for timely referral of haem patients to palliative care
- Navigating Blood Cancer in Its Final Stages: Best PracticesAustralian Commission on Safety and Quality in Health Care Fact Sheet
