Our goal is to provide resources to educate and equip professionals, volunteers and the broader community about palliative care. Please find some information on frequently asked topics below. For more resources, see our Key Publications page.
Palliative Care aims to give comfort to a person when curative treatment is no longer appropriate: when someone is approaching and reaching the
end of life. This might be your situation.
Discomfort. Distress. Anxiety. We have all experienced pain that exhausts us and wears us down. It’s perfectly normal to be worried about how
your pain will be eased. Your loved ones will also be worried on your behalf.
Advance Care Planning means planning your care in advance of your condition worsening to the point where you are unable to make decisions for yourself. It is how you take control of our future health care decisions and help you live more positively.
If you have never seen someone die you may be afraid of what will happen, but the moment of death is usually peaceful. This fact sheet
is designed to help you.
This workbook is all about planning ahead. Much of the information in this kit can be quite challenging, but it might help you to improve the dementia journey.
Want to help make a difference to people as they approach the end of their lives? Social isolation, loss of independence, cognitive impairment, family absence, carer stress, a lack of understanding of palliative care – these are the sorts of experiences of people in Palliative Care and at the end of their life. They need practical, emotional and spiritual support.
What is Palliative Care?
Palliative Care is care and support provided to people who have a progressive, life limiting illness. This means an illness that is going to get worse, and which will eventually shorten the person’s life. Palliative Care recognises the unique needs of a person who is approaching and reaching the end of their life, as well as the needs of their family and carers.
Palliative Care aims to improve the quality of life for patients, their families and carers by addressing their many needs; physical (including treatment of pain and other symptoms), emotional, social, cultural and spiritual needs. It helps the person live as well and as comfortably as possible, and supports them through the deteriorating phase of their illness through to their death. Support is also offered to help family and carers.
Some frequently asked questions:
This depends on your medical needs, your support network and your local services. Your hospital may have a specialised Palliative Care ward or unit for people who need a higher level of medical support or assistance.
Many health services offer Palliative Care through community nursing so that you can stay at home in a familiar environment with more autonomy.
People in residential aged care benefit from a palliative approach as they approach the end of their life.
Wherever you are, ask about what support services are available that could provide additional assistance to you and your family or carers – like volunteers trained in palliative care.
To find a palliative care service in your area, see our Services Directory here.
Palliative Care can be provided to a person from the point of diagnosis of a life limiting illness and throughout its different stages. Palliative care is an approach to care that enables the person to have improved quality of life and actually assists them to live more comfortably. The type of palliative care you receive may vary depending on your changing needs.
Consider accepting a referral to Palliative Care when you are still reasonably well but you have some needs that require assessment (eg pain or symptoms or needing support at home). This way, you will be able to have better quality of life and feel supported during your illness.
“My first reaction was that we didn’t need palliative care. I feared what this meant. I felt more comfortable when I realised that palliative care was much more than just nursing a dying person – it was about holistic support and understanding, ensuring that my husband could still ‘live’ as best he could in the time he had left. I know my family would not have coped nearly as well physically and emotionally without it” (Carer)
Palliative Care can be provided to a person who has a progressive, life limiting illness. Palliative Care is not just for people who have advanced cancer. It can also be provided to be people with (but not limited to) end stage heart, lung or kidney disease, neurological conditions and end stage dementia.
The way palliative care is provided and who provides it depends on the person’s needs. As the person’s condition starts to change and their needs increase, the earlier a person can receive a palliative care approach to their care, the better their quality of life and symptoms may be.
No it doesn’t. . Many people think that Palliative Care is only about care that is provided in the last days of life (terminal phase), but that is a myth. Palliative Care in the last days of life is only one part of palliative care, but an obviously important part.
The type of care that is available will depend on your needs, the needs of your carer, and what services are provided in your area. Palliative Care can include (but is not limited to) medical, nursing or allied health services to manage your changing health needs. This may include pain and symptom management, medication management, counselling and support services, equipment provision, referrals to other services for personal care and home care services, respite care, volunteer services and bereavement support.
Palliative Care can be provided by a number of different health professionals, depending on the needs of the person. Most people receiving palliative care will be cared for by their General Practitioner and community nurses or residential aged care staff. This is called a palliative care approach.
A small number of people experience more complex problems as their condition advances. These people may be referred to a specialist palliative care service where a team of specialist professionals will work together to address these concerns.
A person receiving palliative care for advanced cancer may wish to continue their current treatments such as chemotherapy or radiotherapy if their specialist recommends it for pain or symptom management. It is important to have an open discussion with your treating doctor about the goals of the treatment, as the goal of treatment will have changed from trying to cure the disease to relieving symptoms. This is called palliative chemotherapy or palliative radiotherapy.
Alternatively, after discussion with your treating specialist and your family, you may decide not to continue with these treatments.
Palliative Care can be provided by a number of different health professionals, depending on the needs of the person. Most people receiving palliative care will be cared for by their General Practitioner and community nurses or residential aged care staff. This is called a palliative care approach.
However, if a person’s symptoms or needs are more complex, they can be referred to a specialist palliative care service where a team of specialist professionals will work together to address these needs. Alternatively, the patient’s General Practitioner may seek advice from a specialist palliative care service on the patient’s behalf.
Depending on the person’s needs and the services that are available, a care team may include:
- General Practitioners
- specialist palliative care doctors and nurses
- specialist doctors – oncologists, cardiologists, neurologists, respiratory physicians
- allied health professionals – pharmacists, occupational therapists, physiotherapists
- social workers
- grief and bereavement counsellors
- pastoral care workers
- trained volunteers
You can talk about palliative care and your needs with your doctor or contact your local health care service or hospital to find out what palliative care services are available in your area.
Palliative Care can be provided in any setting. This can be in the person’s home, hospital, hospice or a residential aged care facility.
Many people prefer to receive care at home, but this will depend on many factors, including:
- the nature of the illness
- if the person has someone who can care for them
- how much support is available from the person’s family and community
- what community services are available
Wherever you are, ask about what support services are available that could provide additional assistance to you and your family or carers.
Not everyone will experience pain. Various illnesses cause various symptoms, or none at all. If you do experience pain or are distressed by symptoms, it is important to tell your health care team so they can do a thorough assessment to determine the best way to manage this pain. There are numerous medication or non-medication measures that can be used to treat pain or symptoms from your disease. Finding the right management plan for you is part of the expertise of the palliative care team.
Some complementary therapies, such as massage, acupuncture, aromatherapy or meditation can also be helpful in relieving pain or symptoms. Speak to your team about this if you would like more information.
Every person is different and has different needs. It is important to know what care and support is available and how to receive it.
Palliative Care Australia is the peak body representing the States and Territory. Here you can find more information and links about palliative care and the following resources:
National Palliative Care Service Directory – an online searchable directory of palliative and end of life care services across Australia.
Supporting a friend or family member – What can I say – What can I do? When someone I know is living with a terminal condition – strategies for making a difference to help you help someone you know who is living with a terminal condition.
Now what? Understanding grief – information about grief and bereavement
Facts about morphine and other opioid medicines – information on the facts and myths about medicines used in palliative care
Asking questions can help – a booklet with a list of questions you may wish to ask when you are seeing a member of the palliative care team. This question list helps you get the information you want about palliative care and your illness.
About pain and pain management – a brochure with information about pain and how it can be controlled.
About the process of dying – a brochure that guides you through what happens when someone is dying.
Advance Care Planning: Decision making for the end of life – explains the process of making sure your wishes for care at the end of life are known if you become too unwell to make decisions for yourself.
Standards for Providing Quality Palliative Care for All Australians – a list of standards that guide the delivery of quality palliative care in Australia
www.palliativecarensw.org.au is the website of Palliative Care NSW, the peak body for palliative care in NSW. You can find all of the above brochures there as well as Advance Care Planning resources for people with Dementia and their families as well as information about volunteers and volunteering. Printed versions of these brochures are available from Palliative Care NSW on a cost recovery basis to organisations, and free of charge to individuals.
CareSearch website provides more information available for patients and families, including in other languages.
EHospice: Read online palliative care news, views and inspiration from around the world
Advance Care Planning is the process of ensuring that you have thought about, then talked about (with your carer, family, doctor or your health care) and then documented your health care wishes, in the event that you may not be able to speak for yourself or make decisions as your condition changes. This is to ensure that you are receiving the type of care that you want based on your values and goals, and not the type of care that you don’t want. It is important to talk about whether you want resuscitation (CPR), or invasive treatments such as feeding tubes, or other treatments that may not be beneficial to you and not add to your quality of life.
Talk to your doctor or nurse about your care wishes. You can also refer to the brochure:
Advance Care Planning: Decision making for the end of life. This explains the process of making sure your care wishes are discussed and documented if you become too unwell to make decisions for yourself.
Palliative care is the specialised, multi-disciplinary and holistic care of someone living with a life-limiting illness.
About death & dying
Caring for a person during the last few weeks and days of life can be stressful and demanding. Many different feelings and emotions may surface at this time.
Carers and family are often concerned that death will be a painful experience for the person. However, the time before death is usually peaceful. There is a gradual winding-down that might take several days, as if the body is ‘letting-go’ of life. If restlessness does occur, it can be treated.
Carers are often concerned that death will be a painful experience for the person. However, the time before death is usually peaceful. There is a gradual winding-down that might take several days, as if the body is ‘letting-go’ of life. If restlessness does occur, it can be treated.
Not all of these signs will occur in each person. Nor is there a particular sequence in which they will occur. Sometimes these signs will appear a few hours before death, sometimes a few days. These physical signs are part of the normal, natural process of the person’s body gradually slowing down.
Apart from the signs described here, you might notice other changes that worry you. The palliative care team is there to assist you by providing information and support.
Please ask for help at any time. The team expects to have increased contact with you in the last stages of the person’s life.
You can bring enormous benefit to the person you are caring for simply by sitting with them, holding their hand and speaking in a calm and reassuring manner. Even when the person does not respond, they can probably hear you.
Don’t underestimate the value of these simple things. ‘Being with’ can be more important than ‘doing for’.
Changes you may notice and what you can do to help
Appetite and thirst
The person’s appetite and thirst may decrease and they may have little desire to eat or drink. This concerns many carers, but is a natural process and is not painful for the person. Sips of water or a moist mouth swab will help them. You could ask the nurses to assist with mouth care. Attempting to feed someone who is unable to swallow may make them distressed.
Sleep and alertness
Changes occurring in the person’s body mean that they may spend a lot of time asleep, may be drowsy and difficult to wake up. It is best to talk to the person when they seem most alert, and to allow them to sleep when they want to. There is no need to shake the person or to speak loudly. It is best to speak softly and naturally.
The body’s temperature may change. At one time the person’s hands, feet and legs may be increasingly cool to the touch, and at others they may be hot and clammy. Sometimes parts of the person’s body become blotchy and darker in colour. This is due to the circulation of the blood slowing down and is a normal part of the dying process. If the person indicates that they feel cold, use light bedding to keep them warm. Too many bed clothes or an electric blanket may make them hot and restless. Provide good ventilation. A fan to circulate the air and cool damp towels can help if the person seems hot.
The amount of urine that the body is producing decreases due to the reduced amount of fluid the person is drinking. The urine may become stronger and darker in colour. Many carers are concerned that the person will lose control of their bladder and bowels. This doesn’t happen to all people, but if it does then pads and absorbent sheets should be at hand. A member of the team will advise you about what is needed.
As coughing and swallowing reflexes slow down, saliva and mucous may collect in the back of the person’s throat, causing a gurgling, bubbling or other noise. This noise can be a concern to carers, but does not usually cause distress to the person. To help improve the situation you can lift the person’s head and support them with pillows so that their head is turned to one side. Medications can also be given to slow down the production of saliva and mucous and to improve comfort.
Regular breathing patterns may change. Sometimes the breathing may be fast, and at other times there may be long gaps between breaths. Breathing may be shallow or noisy. This too is due to blood circulation slowing down and a build-up in the body’s waste products. It is not painful or distressing for the person.
Due to the decrease in circulation of blood to the brain and to other changes happening in the body the person may become restless or agitated. To have a calming effect, speak with quiet calm, lightly massage the person’s hand or forehead, or softly play familiar music. Let a palliative care team member know if the person becomes restless or agitated. Medications can be given to reduce this.
How will you know when death has occurred?
- Breathing stops
- No heartbeat or pulse can be felt
- The person cannot be woken-up
- Eyelids may be half open
- Sometimes their mouth may also be open
- Pupils are fixed
You don’t have to contact anyone immediately unless you want to. It is important that you do everything in your own time. There is no need to hurry. Telephone a relative or friend if you want them to be with you. If the person dies during the night you can wait until morning before you notify the doctor or nurse, or you can call them straight away.
The person’s body can stay at home for as long as you wish or need, especially if you would like friends and relative to come and say their goodbyes. It is a good idea to turn off or remove sources of heat such as room heaters, electric blankets and hot water bottles. It is also important to straighten the person because their limbs will stiffen, and if you can, replace dentures if they were removed. You can sponge away any perspiration or body fluids that worry you. It is not necessary to bathe the person completely, unless you want to. The palliative care nurse can help you to do this if you would like to. When you are ready, contact the funeral director who will take the person’s body and guide you through the funeral arrangements.
Dementia is a serious loss of cognitive ability in a previously unimpaired person, beyond what might be expected from normal aging. It may be static, the result of a unique global brain injury, or progressive, resulting in long-term decline due to damage or disease in the body. Although dementia is far more common in the older population, it may occur in any stage of adulthood.
The onset of dementia is often very gradual but it does mean that a person’s abilities will deteriorate, sometimes rapidly over a few months, in other cases more slowly over a number of years until ‘advanced stage’ dementia is reached.
Dementia is a terminal condition and there is currently no cure. The fact that dementia will result in death is not easy to come to terms with and can often be a surprise to learn.
Advance Care Planning means planning your care in advance of your condition worsening to the point where you are unable to make decisions for yourself.
It is how you take control of your future health care decisions and may help you to feel more positive about the future. The ability to decide what health care and health treatments we want is something we take for granted every day. However, there may come a time when illness makes us unable to make clear what we want from our health care providers.
If you are diagnosed with dementia – that time will certainly come.
In NSW there are a number of things that can be done in advance of such a time, so that your wishes can be respected by health care workers and your family or carers.
In advanced dementia there are treatments and supports available that can help keep people comfortable and free of pain and discomfort. This is known as Palliative Care. Palliative Care can be provided at hospital, at home and/or in a Residential Aged Care Facility.
Some people think that Palliative Care is only for people with cancer. This is not true. Palliative Care is available for anyone with any life-limiting illness,
including dementia. Palliative Care can be provided at any stage as the dementia progresses, if it is needed. You can speak to the doctor
about when a Palliative Care approach would be helpful and when a Palliative Care Team should be involved.
Palliative Care is not only ‘for the very end’, in fact it can be better to talk to the Palliative Care team as soon as possible. The Palliative Care Team can provide advice on medical care including pain and symptom management. But it also provides specialised nursing care as well as spiritual or psychological support. A social worker can provide counselling and support to both patients and their family. They can work as part of a specialist Palliative Care team or may work alongside other health professionals in providing care in the community setting. They are specialists in helping with grief and offer bereavement services. In some larger hospitals there are physiotherapists, diversional therapists and other allied health services.
With advanced dementia a person will not have the capacity to give consent so if you are caring for someone with advanced dementia, you might be required to make treatment choices for them. If you know exactly what the person with dementia wanted, you will feel more confident about the decisions that you make on their behalf.
So the time for Advance Care Planning is now. If you have recently been diagnosed with Dementia or someone in your family has, there is no time to lose! You should consider completing an Advance Care Directive before the capacity to make decisions is lost. An Advance Care Directive will only be used when you are unable to make such decisions or are unable to communicate your preferences. If making an Advance Care Directive is too difficult at this time then the two most important things you can do are to appoint and Enduring Guardian, and to communicate your values and health care preferences to them.
An enduring guardian is a person, over the age of 18 who agrees to be appointed by you to make personal and lifestyle decisions and/or medical treatment and health care decisions on your behalf, only when you are no longer able to do so for yourself. You may appoint more than one enduring guardian if you wish, and you may limit the functions of each one.
To appoint an enduring guardian you must do so in writing using an approved form. This is a legal document, and both you and your appointee need to sign the document in the presence of a NSW legal practitioner or a registrar of the local court. A fee may apply. In appointing an enduring guardian you need to help them to understand what your wishes, values and future care preferences are.
Advance Care Directives
In NSW an Advance Care Directive (or ACD) is a written statement completed by you informing others of your health care preferences. There is no set format, although several examples are available. Although there is no specific legislation for ACDs in NSW, the NSW Ministry of Health recognises ACDs as an extension of the individual’s right, under common law, to decline medical treatment. The ACD acts as your voice when you are no longer able to express your health care preferences directly. It is recommended that you discuss your thoughts about writing an ACD with an appropriate health professional who can assist you with understanding the health situations that may arise, and the possible treatment options available.
It is also recommended that you date your ACD, that you review it regularly, at least every year, and that you make copies available for your treating doctor, enduring guardian (if appointed), and that you take a copy with you if you are admitted to hospital.
The ability to make your own decisions is called ‘capacity’. When you have the capacity you can make your own decisions about things that happen in your life. Generally when a person has capacity to make a decision they can:
- understand the facts and choices
- weigh up the consequences; and
- communicate the decision.
Substitute Decision Maker / ‘Person Responsible’
If you are no longer able to make health care decisions for yourself, NSW law provides that such decisions fall to the next Person Responsible. This may not be the same as the ‘next of kin’.
In order of appointment the Person Responsible will be:
1. A guardian or enduring guardian; or, if there is no guardian or enduring guardian;
2. The most recent spouse, de facto spouse or same sex partner with whom you have a close and continuing relationship; or, if there is no spouse, de facto spouse or same sex partner;
3. An unpaid carer who is now providing support to the patient or provided support before the patient entered residential care; or, if there is no carer;
4. A relative or friend who has a close personal relationship with the patient.
Please consider identifying your Person Responsible using this process, and discuss your health care wishes and preferences with them. They will then be able to speak for you in an informed way should the need arise. e.
Discomfort. Distress. Anxiety. We have all experienced pain that exhausts us and wears us down. It’s perfectly normal to be worried about how your pain will be eased. Persistent intense pain can eat away at us.
You can expect the specialist Palliative Care team to take your pain very seriously – after all, it is what they are experts in. The good news is that most pain can be relieved.
Not everyone will experience pain, but if you do there are many medications available and different ways of administering them. Other treatments and techniques will also help to relieve discomfort, like aromatherapy and massage.
To treat your pain the Palliative Care team need to know what pain you are experiencing. Try to describe as clearly as possible the location and intensity of the pain. If the pain comes and goes keep a diary and record what you were doing that might have affected your pain. Call the team if you experience changes in the nature, location or intensity of pain. Information about your experience of pain will be valuable clues for the team in how to best relieve your pain.
Medication is almost always used as a first step in treating pain in Palliative Care. There are different types of medication and different ways of administering the medication such as tablet or liquid (oral), skin patches and injectable (usually under the skin). The correct dose is a dose that eases, or even stops the pain and gives you comfort. You may be prescribed regular medication to be taken at regular intervals (e.g. every 4 or 8 hours). These doses ensure that a certain level of drug stays in your bloodstream at all times, so it is important that you take the medication at those intervals. Do not wait to experience pain before taking another dose. If you find that you experience pain which ‘breaks-through’ these regular doses then you should contact your team. If the team has already arranged for a prescription of ‘break-through’ medication then you should take this and make a record of the time and dose. Using pain medication is not a sign of weakness. Pain medication helps your body relax and this improves blood flow and body function. Good control over your pain gives you a better sense of control over your life, and will help you relax and improve the quality of your life.
Morphine and similar drugs cause constipation. This can be alleviated with laxatives. Dietary changes can also be of help. Some people fear that they will become zombie-like on pain medication. There may be some sleepiness in the first few days but this effect is usually temporary. This is the result of your body adjusting to the new level of medication and may also occur if your dose levels are increased. Some people think that drugs like morphine are addictive when used for pain relief. This is a myth. Morphine targets the pain receptors in your brain – you will not become addicted when it is properly prescribed.
Being in control affects the way you experience pain. The less control we have over our situation, the more likely we are to experience worse pain. Other sources of stress in your life will also affect your experience of pain. Social isolation, boredom, anxiety, relationship issues and even lack of trust in your health professionals may each contribute to a more intensive experience of pain. Make a list of all the things that help you relax. Keep these nearby and share them with your loved ones and team, and encourage them to encourage you to do appropriate activities when in pain. These might include sitting in the sun, meditation, going for a gentle walk, using aromatherapy, having a coffee at your local café, wearing your favourite scarf, listening to music, calling a friend, patting a pet, singing to yourself or watching the footy.
You could also consider the use of hot or cold packs, acupuncture or acupressure, physiotherapy or laser therapy. Think about how you are holding your body or how you are positioned in bed, and use pillows to relieve any tension around your back or neck or painful body parts. The Palliative Care volunteer service may offer hand and foot massages, haircuts, meditation groups, social outings, music or art therapy and even outings to local venues just to socialise. A volunteer could also share a game of cards with you or read a book to you.
Is it likely that I will experience pain? What is likely to cause my pain? How intense is the pain likely to get? How effective will the medication be? What are the likely side effects? Are there other medications if this one doesn’t work for me? Can I adjust the dose myself? What complementary techniques or treatments could I use? You can find more information in the Palliative Care Australia brochure Asking Questions Can Help.