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Many of us are realising that we have family, friends or work colleagues who have serious health problems or who have been told that their disease is not curable. We need to understand that end of life is now a part of their life. We can learn how to support people who are living with a terminal illness, who are providing care, or who are grieving after a death.
Palliative care is for people of any age with a life-limiting illness and their families. A life-limiting illness is one likely to cause death in the foreseeable future. This can include illnesses such as cancer, neurological disease, dementia and advanced kidney, heart, liver, and lung disease.
Palliative care helps people to live their life comfortably and as fully as possible by supporting their physical, emotional, social, and spiritual needs.
Information sheet explaining what palliative care is, who it is for and who provides it.
We sometimes worry about what to say or not say to someone who is seriously ill or dying. When you learn that someone has a life-limiting illness it can be distressing and confronting. You may not feel prepared to talk about death and be concerned that you will make things worse. Remember, there is no proper or right thing to say. The important thing is to be there. If you are not sure what to say, you can start with a simple recognition that this is hard. You could say "I’m really sorry you have to go through this."
Feelings of discomfort about what to say will fade as you spend more time with the person. Being with someone and being willing to listen is enough.
Take the lead from how they respond. Sometimes they may not want to talk, or they may be too tired. Other times they may want to reminisce or talk about their concerns and fears.
When someone is unwell the person and family can face different challenges. There are ways that you can support the person and provide a family carer with help to continue with this important role. Sometimes people don't get involved because they don't know how to help.
Let the family know that you care and want to continue to be involved. There are many simple ways that people can help from planned visits to preparing meals to offering to help with gardening or childcare. Think about how you can support the family carer. This may be sitting with the sick person to give the carer a break or taking the carer out for a coffee and cake.
Ask them if there are specific ways you could help and offer suggestions if they are not sure. Sometimes people can be reluctant to accept help. Allowing them some choice can help. For example, rather than asking “How can I help?” say “I’m going to cook you some frozen meals. Would you prefer lasagne or chicken curry?”
This brochure suggests some strategies for helping someone you know who is living with a terminal condition.
Not all of us live near to a family member or friend that requires palliative care. You may not be sure how to provide support and help. Even from a distance there are many ways that you can provide emotional and practical care and support. There are different types of long distance caring roles. You may be the primary carer for a person but not live locally. You may be supporting another family member who is providing hands on care. Or you may be supporting a family member living an aged care facility who is coming to the end of their life.
The most important thing to do is to stay in touch and to maintain contact. You can continue to phone or message or get onto a video platform. If you can and it is ok with the person and the family, think about planning a visit. This can be helpful in sorting out issues and checking practical arrangements and contacts.
If you have a carer role, you will need to set up good communication systems with the sick person, the hands-on carer and with their care team. Being clear about contacts and responsibilities is important. You may want to see if you can join medical appointments remotely if the service uses telehealth. You will need to discuss how to manage finances if circumstances change and you should if you can help with applications for supports and services.
You can also use online support to make life easier. You could use taxi or rideshare services to help with transport if the person lives alone and can no longer drive. Organising delivery of groceries and other purchases can help make life easier for the person and the local carer. Setting up an online carer network can help in co-ordinating local supports for the person.
The Healthy End of Life Plan (HELP app) can help you to put things in place to make the most of all the personal and social networks around you.
Call 1-800-725-548 (PALLI8), Monday to Friday from 08:30 am to 04:00 pm. You can request a call back by filling out our call back form.
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