What is palliative care?
Palliative care is person and family-centred care provided to people of all ages with life-limiting illness, who are expected to die due to their illness. It aims to help people live as well as possible, for as long as possible, before they die. While it includes “end-of-life”, your parent doesn’t need to be “knocking on death’s door” to access it.
It also helps because it’s “family-centred”. That means that family, loved ones and carers can also receive practical and emotional support. So it not only benefits your parent, it also benefits you.
Why would I need to organise palliative care for my parent?
If your parent has been diagnosed with a life-limiting illness (i.e. told they only have limited time left to live), you probably want them to live out their days with the best quality of life available. That’s where palliative care comes in. Palliative care is about maintaining quality of life. The aim of palliative care is neither to hasten nor postpone death. Rather, the focus is on living as well as possible, for as long as possible.
What does palliative care do?
Palliative care helps people manage pain and symptoms to ensure their quality of life is maintained as the illness progresses. Care is focused on what the person wants and needs, and covers the physical, emotional, spiritual and social needs of the patient and their loved ones.
Palliative care may include:
- Relief of pain and other symptoms
- Medication management
- Food and nutrition advice and support
- Care and education to support better mobility and sleeping
- Planning for future medical treatment decisions and goals of care
- Resources such as equipment needed to aid care at home
- Assistance for families to come together to talk about sensitive issues
- Links to other services such as home help and financial support
- Support for people to meet cultural obligations
- Support for emotional, social and spiritual concerns
- Counselling and grief support for the person with the illness and their family and carers
- Referrals to respite care services
- Bereavement care to the family and carers once the person has died.
When should I organise palliative care? Do I need to wait until my parent is very sick?
It’s a good idea to start the palliative care process as soon as your parent receives a diagnosis. Access to palliative care from the time of diagnosis can help your parent receive the holistic end-of-life care that they want and deserve. So, if your parent has unfortunately received a late-stage cancer diagnosis, dementia diagnosis or a range of other illnesses where there is no prospect of a cure, you may want to speak to your parent’s health professionals and ask them about palliative care.
Where is palliative care provided? Does it need to be in a hospital or hospice?
Palliative care can be accessed in a range of settings including at home, in hospital, in a hospice or in a residential aged care facility, so your parent can live the life they choose comfortably for as long as possible.
Who delivers palliative care?
Palliative care can be delivered by General Practitioners, Registered Nurses, Nurse Practitioners, Allied Health Practitioners, Volunteers and Carers, Dhoulas as well as specialist palliative care services. They all play a critical role in delivering exceptional care and optimising quality of life.
The nurses, doctors, allied health professionals, volunteers, and carers involved in palliative care help people with a range of life-limiting illness – dementia, heart and kidney disease, cancer, and many more.
Having a dying parent is tough. How do I take care of myself, while caring for my parent and family?
Caring for someone during the last chapter of life can be a challenging and emotional experience Caring for yourself so that you can care for others is really important. Palliative Care Australia has a great online resource called Self-Care Matters. It aims to support you to prevent burnout and build resilience. It’s a resource not only palliative care professionals, but it’s helpful for families too.
What if I want to learn more about death and dying?
Learning more about death and dying is a really positive thing. At Carers’ Circle, we believe more people should talk openly about death and dying. It’s only through educating yourself, that you can live your best life. Luckily, there’s so many great places for you to go. Obviously there is the Death section of our Carers’ Circle website.
Two relevant articles on palliative care are:
- Palliative care – what you need to know – https://carerscircle.com.au/2021/05/27/guide-to-palliative-care-what-you-need-to-know/
- 10 questions to ask about palliative care in residential aged care – https://carerscircle.com.au/2023/02/18/10-questions-to-ask-about-palliative-care-in-residential-aged-care/
While this advanced care planning article is essential reading – Advance Care Directive – the document that conveys your end of life wishes when you can’t –
There’s also other fantastic resources out there including:
- Palliative Care Australia – https://palliativecare.org.au/
- Advance Care Planning Australia – https://www.advancecareplanning.org.au/
- Carked it game! https://carkedit.com/
The card game “Carked It!” is game about life, death and beyond. It promotes the lighter, even funny side of death and has been designed to encourage and stimulate better conversations around dying and death. On the website you can purchase the game and access serious support to help you prepare for death.
Full disclosure, Carers’ Circle is a member of the Good Death Impact Network, which helped co-design and partly fund the game.
- Good Grief! – https://good-grief.com.au/
Published by Margaret Rice, author of A good death: a compassionate and practical guide to prepare for the end of life, the Good Grief! website provides articles, newsletters, resources, and workshops for grief management & end of life discussion.
- Flamingo – https://www.flamingolife.com.au/
An online offering that helps make end of life planning easier. It’s a secure, accessible digital solution that can help with end of life planning, including advance care planning, funeral wishes, eulogy preparation and death administration.
Full disclosure, the Founder of Flamingo is part of our Carers’ Circle of contributors and is also part of the Good Death Impact Network.
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