Caring to the end
Caring for someone at the end of their life is not something all carers are able to do, but people who have say it is both the hardest and the most important thing they have done.
Whether you have been caring for someone for a long time or have only recently been told they have a life-limiting illness, realising they are not going to recover is a very emotional time. People sometimes think there is a right or wrong way to feel about dying, so the range of emotions experienced can be hard to cope with. Relationships can change significantly, and the caring role can become much more intense at this end of the caring journey, and into grief and bereavement.
Even if you have been caring for many years, awareness of approaching end-of-life can create new fears and uncertainties. There are things to think about and plan for. It is important that you take care of yourself during and after this time.
Palliative care is a family-centred model of care, meaning that family and carers can receive practical and emotional support. Palliative care is not just about dying or ‘end of life’ – it helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness or as a person is ageing.
Palliative Care Australia (PCA) has a number of resources that can help you as a carer, including:
- ‘I am a carer’
- ‘Questions for carers to ask the team caring for your loved one’
- ‘How can I support my friend/family member?’
At the local level, look into the supports that may be offered by the palliative care peak bodies in each state and territory. You can find out how to contact PCA members here
Looking after your physical and mental health as a carer is important, so be sure to make this a priority. There is no need to feel guilty about caring for yourself. Many people receiving care feel better if they know their carers are taking time to rest and recover.
There is a Palliative Caring booklet available specific to each state and territory that helps by explaining what is involved, to better equip carers to make informed decisions and undertake selfcare. It doesn’t give detailed medical advice but presents options to consider and references a range of services and supports that might be helpful including who to contact after a person dies. These resources are available from the PCA member organisations here.
Click on the topics below to read more information
Palliative care is much more than end-of-life care. Anyone living with a life-limiting illness can benefit from a palliative approach. Palliative care treats death and dying as a normal part of life and aims to improve quality of life by providing care for the ‘whole person’ and their family – involving the physical, emotional, social and spiritual aspects of living and dying including appropriate pain and other symptom management of any illnesses or conditions a person may have.
Palliative care does not try to shorten life, nor does it try to make life longer. Many people receive palliative care while still receiving other treatments for their condition. For more information refer to PCA’s ‘understanding palliative care’.
Specialist palliative care services can help you and the person you care for deal with all the uncertainty of not knowing what death and dying will be like. Things may change very quickly, but they might also change slowly and subtly, making this part of the caring journey very challenging.
Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social. Because palliative care is based on individual needs, the services offered will differ but may include:
- Relief of pain and other symptoms e.g. vomiting, shortness of breath
- Resources such as equipment needed to aid care at home
- Assistance for families to come together to talk about sensitive issues
- Planning for future medical treatment decisions and goals of care
- 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
- Referrals to respite care services
Specialist palliative care services can help you understand and make choices about the different options for care at end-of-life; including care at home, hospice care and in-hospital palliative care. Specialist palliative care helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness or as a person is ageing and may be received for many years – not just at end of life in the last months or days.
To find a service go to Palliative Care Australia’s National Palliative Care Service Directory.
Most people who enter residential aged care will die there and should have access to quality palliative and end-of-life care. Residential aged staff can help people with life-limiting conditions to feel as comfortable and supported as possible. You can ask staff to develop a care plan to work with you to support your relative as they approach the end of their life. Residential aged care staff should be able to provide nursing care and pain management. If you think extra support is needed, you can ask for a referral to a specialist palliative care service.
More information is available:
- End of Life Directions for Aged Care (ELDAC) is a national specialist palliative care and advance care planning advisory service.
- My Aged Care ‘End-of-life care’
- PCA ‘10 questions to ask about palliative care in residential aged care’
- palliAGED is an online evidence-based guidance and knowledge resource about palliative care in aged care for use by health professionals and the aged care workforce. It also provides trustworthy information for older Australians, their carers, families and friends.
Paediatric palliative care is about improving the quality of life of infants, children and young people diagnosed with a life-limiting condition and supporting the people who care for them. Palliative care for infants, children and young people involves a diverse range of conditions, symptoms, and experiences. It acknowledges these differences by providing individualised, holistic care that is focused on the physical, emotional, social, financial, cultural, and spiritual needs of the child and family. This new website reflects the diversity of those experiencing paediatric palliative care or those caring for an infant, child or young person with a life-limiting condition.
For information specific to paediatric palliative care visit the Paediatric Palliative Care National Action Plan Project website hosted by PCA and Paediatric Palliative Care Australia and New Zealand (PaPCANZ).
Every adult with the capacity to make their own decisions can refuse medical treatment. If there is doubt about decision-making capacity, they may be referred for a specialist assessment.
State and territory laws cover the rules for substitute decision-making for adults who are not capable of giving consent to medical treatment. In general, a medical treatment decision maker can consent to treatment if they believe the person would have consented to the treatment or refuse treatment if they believe the person would have refused it.
Even if a person does not have capacity to make their own medical treatment decisions, they should still be involved in care planning as much as they are able or want to be involved.
Read more about substitute decision-making:
Pain, breathlessness, fatigue (tiredness) and anorexia (poor appetite) are experienced by many people with palliative care needs. These may not be the same from person to person. They may be mild in some cases or more severe in others. Health care professionals might sometimes use symptom terms that are new to you. Always ask if you are uncertain about something.
Good pain and other symptom control requires good communication amongst patients, carers, medical and nursing staff.
For more information:
- Caring@home for carers is designed to support one-on-one training by health professionals who are teaching a carer to help manage breakthrough symptoms safely using subcutaneous medicines for a person who chooses to be cared for, and to die at home, if possible.
- PCA ‘Learn more about pain and pain management’
- CareSearch ‘Symptoms and medicines’
This can be the most uncertain part of the caring journey. You may be worried about what will happen to the person you care for when you are no longer able to care for them. You may be unsure what you are going to do if you are getting closer to dying.
One way to deal with this is to start planning for the future. You can start to think about things like the person’s future care needs, your own future health care and how you can coordinate with formal services, family and friends. Having things in place now will help you to manage changes in the future.
There are three main things to consider for their future care:
- Where they will live
- What services and support they will need
- Who will look after their rights and interests when you are no longer able to?
Also consider advance care planning for yourself and the person you care for – read more here.
Contact Carer Gateway on 1800 422 737 for advice and carer counselling.
There are things that can help you to prepare as someone approaches the last few weeks and days of life. People vary in what they know, understand and believe about death and dying. They also differ in what they want to know. Each individual should be as informed, or not, as they want to be. For many, knowing what to expect can help take some of the fear, distress and anxiety away. For others, having too much information gives them more things to worry about. (Source: CareSearch ‘Knowing what to expect when someone dies’)
You may also want to consider having discussions about organ and tissue donation. For more information visit Donate Life.
Caring for someone until they die is a major task. When the person dies, there is grief and loss from the death, but there is also the loss of the caring role that has shaped your life. You may not have had time for work, other relationships, or time to yourself, but now you have reached the end of your caring journey. Counselling and other support services can help with understanding your feelings, managing grief and loss, and thinking about how to move forward into a new future.
Loss and grief can be part of your experience at any time during the caring role. It is not limited to when you know someone is dying or during bereavement immediately after their death.
The experience of being a carer in a palliative care situation can be overwhelming and stressful. Just thinking about death and dying can be upsetting and there are many things to consider for you, the person you care for and for others around you. You don’t have to do it by yourself. There is a range of practical and emotional support available. For more information:
- CareSearch ‘people react to death in different ways’
- Carers Victoria ‘An Unrecognised Grief – Carers guide’
- PCA ‘Understanding grief’
- Dementia Australia ‘Coping after the death of someone with dementia’
- Australian Centre for Grief and Bereavement ‘After the Loss of a Child’
You can also contact Grief Line (6am – 12am) on 1300 845 745 or visit the Grief Line website for access to online forums and more resources.
Voluntary assisted dying has been legalised in some jurisdictions in Australia and while some palliative care professionals may also provide assisted dying services, this is not the same as palliative care. For more information on the difference between palliative care and voluntary assisted dying refer to Palliative Care Australia.
Carers Australia has been involved in establishing, and ongoing advisory of the following projects focused on palliative care:
Carer Help has online resources specifically to support people caring for someone approaching the end of their life. CarerHelp provides access to useful and trustworthy information, tools, articles and videos. These resources can help you understand what to expect, improve communication and acknowledge your role.
CareSearch is an online palliative care knowledge network and has trustworthy palliative care information for everyone. You can download a booklet for patients, carers and families to learn about palliative care with its emphasis on quality of life and the support available.
Palliative Care Online Training is a free educational resource designed to support health professionals, family members and carers to deliver best practice palliative care in the community. The training provides users with the knowledge, skills and values to effectively communicate with and contribute to the care of people in the community who have a life limiting illness or who are approaching the final stages of the normal ageing process.
Cancer Council confidential telephone support service 13 11 20 (9am – 5pm Weekdays) for cancer patients, people living with cancer, their families, carers and friends, teachers, students and healthcare professionals. Specially trained staff are available to answer your questions about cancer and offer emotional or practical support.
Australian Indigenous Health lnfoNet for culturally appropriate palliative care and end-of-life care information and resources.
Services Australia ‘Caring for someone’ for information on payments and services if you provide temporary or ongoing care and help if you need to take time off work to care for someone.