Palliative care describes an approach to care for those who are living with a life-limiting illness (an illness that cannot be cured), their family and carers. Palliative care does not mean you are immediately dying; rather it is defined as when treatment will no longer ‘cure’ or ‘fully heal’ your illness. Active treatment may still be undertaken to help relieve your symptoms and sometimes slow disease progression. You may be confronted by the idea of being referred to a palliative care service, however in most cases, early referral is appropriate and beneficial to improve quality of life. Palliative care is about living as well as dying, about diseases well beyond cancer, and about far more people than those just affected through disease.
--Tell me more about palliative care
Over 150 000 people die each year in Australia. Many of these deaths are expected as a result of cancer, other advanced or incurable illnesses, frailty or old age. Palliative care improves quality of life and can be provided in private or public hospitals, hospices, residential aged care facilities as well as in your home. Through early identification and assessment, and by addressing practical issues, functional levels, treating pain and other physical, psychosocial and spiritual problems, palliative care helps you to achieve the best quality of life possible. Some people benefit from palliative care for many years leading up to their passing.
Physiotherapists, along with doctors, nurses, and other allied health professionals, play an important role in the palliative care team. A physiotherapist may be involved at any point from diagnosis to end-of-life care, whether it be early assessment, assisting with managing symptoms, fitness and exercise programs, or helping to educate family and carers in assisting you to be as independent as possible.
More information about palliative care
--What’s the difference between ‘palliative care’ and ‘end-of-life care’?
The terms palliative care and end-of-life care are two different things. These are the definitions currently accepted in Australia:
Palliative care
- when treatment will no longer ‘cure’ or ‘fully heal’ your illness
- an approach to treatment that can be beneficial at any stage of a life-limiting illness
- treatment can be implemented any time from diagnosis to end of life
- treatment is essential to minimise symptoms
End-of-life care
- the care provided when you are approaching the last weeks or days of life
- when body systems are shutting down and death is approaching
- formally called ‘end-stage care’ or ‘terminal care’
- vital part of the palliative approach to care, often provided under the guidance of a specialist palliative care team
Life-limiting illness
- an illness that cannot be cured, but the symptoms can be treated
- some examples include advanced cancer, chronic illnesses such as heart, kidney or lung disease, progressive neurological conditions and dementia
Hospice
- ‘hospice care’ and ‘specialist palliative care’ have been used interchangeably with ‘palliative care’
- hospice is a term used most commonly in countries other than Australia (eg, the UK)
- hospice is often understood to be ‘end-of-life care’ and can also be the word used to describe a palliative care hospital
More information on care at the end of life.
--Does being referred to a palliative care team mean I will be admitted to a ward for dying people?
You can see members of a palliative care team in a range of settings. It may be a home visit, a clinic appointment or in a hospital setting. If your palliative care doctor or nurse feels that your symptoms are poorly controlled, they may recommend admission to an inpatient palliative care unit. This ward may be part of a hospital or a stand-alone palliative care unit.
On admission, you will be assessed by members of the palliative care team who will, after discussion with you and your family, recommend a treatment plan to improve your symptoms. Changes to medication usually requires close medical and nursing supervision which is best done in a hospital setting. Most people admitted to a palliative care unit will return home once their symptoms have improved. However, many people do enter palliative care facilities for end-of-life care.
If you have any concerns, please ask your doctor or another member of the palliative care team.
They are there to assist you in answering any questions or concerns. Information on multilingual resources, advanced care planning and a directory of palliative care services are all available to assist you.
--If I choose not to be admitted to an inpatient palliative care unit, what are my other options?
Palliative care can be provided in a range of settings including hospitals, residential care and the home. Depending on where you live, there may be a team of specialist healthcare workers that can visit patients at home to provide palliative care. Nursing and medical contacts are usually available 24 hours.
--Can I be ‘palliative’ and still remain at home?
Some people choose to die at home. A palliative care service can help put services in place to assist friends and family to provide good quality end-of-life care at home. The team can help to prevent and relieve symptoms by providing regular advice and assessments as symptoms change. If symptoms become too severe to manage at home, the palliative care team may be able to facilitate admission to a palliative care unit.
More information about place of death
--How do I know if inpatient or outpatient palliative care is the right choice?
Living and dying at home, with appropriate support, is preferred by the majority of people. Currently 60–70 per cent of Australians would prefer to die at home but only 14 per cent achieved this. To undertake home-based care, patients and families will be need to request a range of support as listed in the following section. It is often recommended by doctors that some time as an inpatient is essential to monitor and improve symptoms, such as pain or nausea. Many people that are admitted to an inpatient palliative unit are discharged again when symptoms have improved. There is no ‘right’ choice—it is your choice.
--I am scared thinking about being admitted to a palliative care unit. What is it like?
A palliative care unit is like any other hospital ward, but with the addition of specialised medical, nursing and allied health staff who are trained and experienced in caring for palliative patients and their families. It is often less busy and noisy than a major hospital ward. It is a place of hope—hope that you will be understood, listened to, educated and supported. You are welcome to contact the ward you might be admitted to, and ask if you could visit and have a look around prior to admission.
--What is ‘appropriate support’?
Living with a life-limiting illness can be very hard without support from family and friends.
Support is required for:
- transport to, and attendance at, appointments (a second ‘pair of ears’)
- assistance with medications
- assistance in daily activities (eg, cooking, cleaning, food preparation, showering)
- providing general care and comfort
- advocate for you
- maintain diary of appointments
- assist to help you with fatigue
- emotional support
Your illness will affect the entire family in some way. Although living at home with a life limiting illness may be rewarding, it can also be strenuous, and draining both physically and emotionally.
Many carers struggle to cope, and some report that they do not contact services such as health professionals, community organisations and government services for assistance and support. Struggling to cope will not assist the patient, but may exhaust or injure the carer or even you the patient.
For safety and wellbeing, it is recommended that, you, your carers and family seek referrals to health professionals such as physiotherapists, occupational therapists, social workers, speech pathologists and community-based support organisations. Family will be supported and followed up by community palliative care service after a patient passes away.
--How can physiotherapy help me in palliative care?
Research shows that physiotherapy and rehabilitation during palliative care will assist you in a wide range of areas:
- walking and moving around with safety and independence
- moving around the bed and transfers in and out of bed
- maintaining your own independent self-care (activities of daily living)
- prevent and/or reverse weakness, muscle wasting and joint stiffness
- pacing activities and breathing techniques to manage shortness of breath (breathlessness)
- pain management techniques
- swelling (lymphoedema)
- nausea
- fatigue, tiredness, lethargy
- provision of walking aids and other equipment
- education on a variety of topics to help you and your family live life fully
- advocacy for yourself, family and carers
Your palliative care physiotherapist will offer personalised education to you and your family to help you manage your symptoms and achieve the best quality of life. Together you will able to set realistic goals that are meaningful to you. This will give you a sense of control to make decisions, enabling you to live life fully until you die. Physiotherapists also liaise with occupational therapists, speech pathologists, social workers and other allied health staff to assist you maintain your functional levels and achieve your goals.
More information on how physiotherapy works in palliative care
--I'm tired and lethargic—how does going to physiotherapy and doing more activity help?
Research shows that exercise prescribed by your physiotherapist can increase energy and improve fatigue. This can be achieved by gentle exercise, education on pacing activities, and possibly attending group activities run by palliative physiotherapists. Exercise and rehabilitation has positive effects on the following:
- symptoms (eg, nausea and fatigue)
- physical and functional capabilities
- muscle strength
- emotional wellbeing
- psychological symptoms
- quality of life
- mortality and morbidity
As with any exercise or rehabilitation, your program can start slowly and develop as your body adapts. Some days you will feel better and therefore accomplish more; other days you may require increased rest. It is in understanding and adapting to your symptoms that a palliative physiotherapist is invaluable in helping you manage your fatigue.
--Do I need to see a physiotherapist or can I do it by myself and improve my function and quality of life?
Yes, you can improve your fitness/mobility/health and quality of life by maintaining activity yourself. However, working with a palliative physiotherapist will encourage, educate and assist you to improve and then maintain your activity levels.
A palliative care physiotherapist can offer you realistic hope, along with practical advice to support you and your carers. Help to cope with the ups and downs of the disease, symptoms and your changing physical condition, as well as sharing knowledge in the right times to push forward and the right times to rest and recover, are some of the many things your palliative care physiotherapist can guide you with.
Your palliative physiotherapist is an invaluable assistance and resource during the palliative and end stage of your disease. They will know of the appropriate referrals to optimise your function and quality of life, and give insight as to the strategies, resources and equipment that could assist you. Some ideas to improve your level of function and fitness include:
- where possible, continue with all activities independently, or with minimal assistance
- maintain walking, swimming, dancing and any activities you enjoy
- keep up with your social activities
- do small amounts of exercise more often, rather than exhausting yourself with one longer exercise session
- ask a friend to join you if you have lost confidence or motivation to exercise on your own
- seek advice from a physiotherapist if you are not sure where to start.
