Palliative Care Australia
Services offered
Palliative care
Overview
At the end of life, the person you are caring for may need help with their personal care, such as eating and bathing. If you’re at home, you may need special equipment or extra support from the palliative care team.
Practical ways for friends and family to help include cooking meals, helping around the home and running errands.
It’s helpful to let the person dying share their feelings, and for you to share yours, too. You may also want to say goodbye in a special way.
What's on this page
Providing practical support
Many people worry about how they’ll manage the day-to-day tasks of caring for someone. To make it easier and safer to care for the person at home, you may need to modify the environment (e.g. handrails in the shower) or buy or rent equipment (e.g. shower and toilet chairs, bedpans, hospital bed).
Some carers prefer to provide personal care and practical support themselves with some guidance from a health professional, or occasional home help or respite. Other people find providing personal care awkward or overwhelming and prefer to have it given by someone else. The palliative care team can help reduce your stress and free you up to spend time with the person you’re caring for in a way that is comfortable for you.
You may feel unable to care for someone at home and prefer that they receive specialist care in a hospital, palliative care unit or in a residential facility. Even then, you can still provide some personal care by helping them eat, shower and use the bathroom.
Practical ways to help
There are many things you can do to support someone at the end of life. Many people want to help, but might not know how. Let people know what the sick person may need, and what help you need as a carer. Perhaps one person can coordinate care or use an app such as Gather My Crew.
Prepare meals
Prepare meals
Cooking meals can become challenging. If possible, ask the person what they want to eat. Offer simple, small meals and mash food so it’s easier to swallow. A dietitian can give advice on preparing food. If friends offer to cook, let them know what meals are suitable. As the disease progresses, the person may lose their appetite, taste and may not be able to eat or drink. Don’t force them to eat or drink. Chips of ice can moisten the mouth.
Help with bathing and toileting
Help with bathing and toileting
You may have to give the person a sponge bath, wash their hair over a basin, help them on and off the toilet or commode, help them use a urine bottle or bedpan, and help them to wipe themselves. An occupational therapist can help choose suitable equipment and teach you how to lift safely and correctly. You may need someone to physically help you with this.
Sort out the paperwork
Sort out the paperwork
Getting their affairs in order can give people closure to their life. Help gather important documents, discuss the person’s choices for their future health care (e.g. substitute decision-maker), and arrange legal advice if needed.
Record social media details
Record social media details
People often have more of a social media presence than they realise. Help the person list their social media accounts, passwords and what they want to have happen to them after they die. See Managing social media for more information.
Do odd jobs and run errands
Do odd jobs and run errands
Friends may be able to help with walking the dog, mowing the lawn, picking up the kids, or doing the shopping or laundry – anything that eases the workload of the main carer. Some volunteer organisations may be able to help with suitable practical jobs too.
Help with getting in and out of bed
Help with getting in and out of bed
It’s common for a dying person to spend more time in bed. You may need to help them get in and out of bed, roll them over regularly so they don’t get bedsores, or lift them to change the sheets. You can use equipment to help with lifting. Talk to the palliative care team about borrowing a pressure-relieving mattress or hospital-style bed. Many people make space in the living room for a bed, particularly if bedrooms are located upstairs.
Manage medicines
Manage medicines
If you feel overwhelmed about giving medicines, ask your doctor, pharmacist or nurses for suggestions. A pharmacist can put tablets and capsules into a blister pack (Webster-pak) or pill organiser, which separates them into the days and times they need to be taken. See Caring for someone with cancer for tips on managing medicines.
Providing emotional support
The diagnosis of a terminal illness may be a crisis for family and friends. How everyone responds can depend on their relationship with the person dying and their own beliefs about death. Natural reactions are shock, anger, fear, sadness or relief, or a combination of these.
People who are dying often say they want to talk about what is happening but are afraid the topic will upset others. While starting the conversation can feel hard, sharing feelings is valuable for both of you.
As the person you are caring for nears the final days of life, there are still many ways to spend time together: sit with them without talking; read them a book; look through old photos and talk about the pictures; sing a song; share some special memory or experiences you’ve had together; or tell them that you love them and that family and friends send their love. See When you don’t know what to say for more information.
When someone is ill for some time, it’s common for their family and friends to start grieving their death before it happens. This is called anticipatory grief. You might find yourself wishing for the person’s life to be over, or start thinking about how you’ll cope, the funeral, and so on. All of these responses and thoughts are natural and okay. It may help to speak to a health professional or counsellor about how you’re feeling, or to call Cancer Connect on 13 11 20.
Although all carers have the same rights, LGBTQI+ carers may worry about health professionals or the person’s family or friends accepting them. Talk to your GP about local services that can help. You can also contact QLife, a national counselling and referral service for LGBTQI+ people. Call 1800 184 527, or see LGBTQIA+ cancer resources.
Saying goodbye
Saying goodbye
A life-limiting illness offers you time to say goodbye. You can encourage the person who is dying to discuss their feelings, and you can talk about your own in return. Sharing how you both feel can start important conversations that can be memorable. This is also an opportunity for you to tell the person who is dying what they mean to you and how you might remember them.
The person nearing the end of life may want to make a legacy, such as writing their life story or letters to family and friends. They may want to visit a special place or contact someone they’ve lost touch with. You can often find small, achievable, but very meaningful things to help the person (and you/those around them) say goodbye.
When you don’t know what to say
When you don’t know what to say
People often wonder what they should say to a person who is dying. It is understandable that you might feel confused. What you feel might be so complex that it is hard to find the right words, or any words at all. It is natural to worry about saying the wrong thing. You may want to offer something that will help them cope but don’t know what that is. It is usually better to say something than to pretend nothing is wrong.
Most times, someone who is dying will find comfort in you being there, and appreciate knowing that family and friends are thinking of them. Even if you feel you’re not doing anything, just being there sends the message that you care.
In her book The Etiquette of Illness, Susan Halpern suggests asking, “Do you want to talk about how you’re feeling?” rather than “How are you feeling?”. This approach is gentle and less intrusive. It also gives the person the choice to respond or to say no.
Ways to talk with someone who is dying
- Listen to what the person who is dying tells you. They may want to talk about dying, their fears or plans. Try not to prompt an answer that confirms what you think or your hope that things could be better.
- If you think they’d find it easier to talk to a spiritual care practitioner, offer to put them in touch with one.
- Try to treat someone who is dying as normally as possible and chat about what’s happening in your life. This makes it clear that they’re still a part of your life.
- Avoid talking in an overly optimistic way, for example, “You’ll be up in no time”. Such comments block the possibility of discussing how they’re really feeling – their anger, fears, faith and so on.
- Apologise if you think you’ve said the wrong thing.
- Let them know if you feel uncomfortable. They might be feeling uncomfortable too. It’s okay to say you don’t know what to say.
- Accept that you or the person dying may cry or express anger. These are natural responses to a distressing situation.
- Ask questions. Depending on how comfortable you feel asking direct questions and on their willingness to talk, you could ask, “Are you frightened of dying?” or you may prefer, “I wonder whether there’s something you want to talk about?”.
- Encourage them to talk about their life, if they’re able to and interested. Talking about memories can help affirm that their life mattered and that they’ll be remembered.
- Just be there. Sometimes it’s the companionship that is most appreciated. You could sit together and watch television or read.
- Even if they’ve shown no religious interest in the past, that could change as death approaches. You could offer to pray together, but respect their wishes if this is not something they want.
Making arrangements
As death approaches, speak to the palliative care team about what to expect. You may want to consider the following:
Rituals – Ask the person whether they’d like a clergy member or other spiritual carer at the bedside, and what rituals or ceremonies should be performed.
Contact list – Have information on how to contact the doctor, nurse or support services easy for everyone to find.
Funeral home – Notify the chosen funeral home that a death is expected soon. Some people want to have the body at home for several days, so let the funeral home know if this is the plan.
Ceremony – Find out what the person would like done with their body after death or if they’d like to donate tissue or organs. Some people have strong views about whether they want to be buried or cremated, what sort of ceremony they want, and what memorial they want.
Ambulance service – Ask your health professionals who to contact if complications arise at home. Your first reaction might be to call an ambulance, but an ambulance officer’s duty of care may mean they have to resuscitate. If this is something the person you are caring for would prefer didn’t happen, speak to your doctor about completing an authorised care plan for ambulance officers to follow. Contact the ambulance service in your state or territory to fill in a form so they are not compelled to resuscitate.
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