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Treatment and care towards the end of life

Care at the end of life is available for everyone regardless of age, culture, background or beliefs. There are many types of care and support available to assist patients, family members and carers through all stages of a terminal illness.

The type of care and support provided at the end of your life will depend on your needs. You may receive:

Care at the end of life can include:

  • specialist palliative care services
  • medical reviews, assessments, scans and blood tests
  • medications and procedures
  • relief of pain or symptoms
  • in-home nursing
  • advance care planning
  • short-term care relief and respite care
  • counselling and emotional support
  • cultural and spiritual support
  • guidance and help with accessing information and resources
  • accessing equipment needed to aid care at home
  • home care services, such as cleaning, meals and home maintenance
  • linking you and/or your carer with financial assistance available
  • bereavement support for family and carers after the patient's death.

Carrying out advance care planning now for future health and personal care may be helpful for you. Planning ahead ensures your values, beliefs and preferences are made known. This can help to guide decision-making at a future time if you cannot make or communicate your decisions.

Find information about planning ahead.

Learn more about your rights at the end of life.

Physical symptoms

Symptoms are the things that you experience which can indicate that you are unwell, such as pain, vomiting, loss of appetite and high fever.

Management of symptoms—including pain relief—is an important aspect of care at end of life. Sometimes as a result of life-limiting illnesses, people experience symptoms arising from the progression of their disease.

Example: symptom – breathlessness from end stage lung disease.

Whilst the cause of the lung disease cannot be reversed, the symptom of breathlessness can be managed so the person remains comfortable and is able to breathe more easily.

Talking with your healthcare team about what symptoms you are most likely to experience and how they can be managed can help with developing a plan that suits your preferences.

Some symptoms can also be completely reversed such as infections, however, may require invasive interventions such as intravenous cannula, and may require admission to hospital or an outpatient clinic.

While it’s often not possible to know exactly what symptoms a person will experience in advance, your treatment will be easier to manage if you discuss your preferences for symptom management early.

Some questions you could ask include:

  • What symptoms can I expect in the future? (for example, pain or discomfort, constipation, shortness of breath, nausea or feeling sick, lack of appetite, tiredness, dry mouth)?
  • If I have symptoms, what can be done to improve them?
  • Are my symptoms the same as others with the same condition as me?
  • Can you help to control all of my symptoms or just some?
  • What is the cause of my symptoms?
  • Will my pain and other symptoms be controlled in the future?
  • What are the worst days going to be like?
  • What are the best days going to be like?

Pain management

Pain is unpleasant sensation, suffering or distress of the body or mind. Pain often accompanies life-limiting illnesses and it can affect all aspects of your life—physical, psychological, emotional and spiritual.

How people experience pain is unique—no one else feels pain the same way you do.

However—not all people living with a life-limiting illness experience pain.

Most pain can be relieved or controlled with standard medications and/or methods that don’t involve medication alone.

All people who experience pain should have the expectation that pain management will be an essential part of their overall care.

When discussing pain management with your GP, palliative care or healthcare team, questions for you to raise may include:

  • Can you help to control my pain?
  • Will my pain get worse? If so when can I expect it?
  • What are the different options available for controlling my pain?
  • Will my body get used to pain relief such as morphine?
  • If I start taking morphine now, will it still be effective in the future?
  • Are pain medications addictive?
  • How will my mind and thinking be affected by my pain medications?
  • Will stronger pain medication, such as morphine, make me confused or tired?
  • What other symptoms might I expect from strong pain medications?
  • Can I alternate between different types of pain medications?
  • Are there different ways of taking medications such as morphine?
  • What are the alternatives to strong pain medication?
  • Will my pain medications affect other medications I am taking?
  • Will my healthcare team be supportive of complementary or alternative therapies for my pain?
  • What other strategies can I use to manage my pain?
  • If I have pain does that mean my illness is getting worse?
  • If I need pain medication such as morphine does it mean I am dying?
  • Would it be useful for me to see a physiotherapist or occupational Therapist to help me manage my pain and help me stay active?

Medications

People with life-limiting and terminal illnesses will often be required to take many medications.

Some medications are given to control and slow down the progress of a disease (rather than curing it) and these are often called 'palliative treatments'. They may include chemotherapy, hormone treatments and radiotherapy – all of which can also be ‘curative treatments’.

Other medications may be given with the aim of managing and / or preventing symptoms associated with a palliative condition.

In a palliative approach to treatment, giving medications should be as simple as possible and support the person’s quality of life.

Medications should frequently be reviewed, and some medications may be stopped if they are no longer working or needed. Some medications may also be stopped if they are causing more harm than good.

Your healthcare team or GP should explain why specific medications are given and help you understand the risks and benefits of continuing or stopping medications.

If medications are required to manage symptoms but cannot be administered by their usual method, there are different options available to ensure people are comfortable and have choices.

Example: medications given into a vein can sometimes be given in tablet form or via injection under the skin so that a person with limited time to live can remain at home if that is their preference.

Types of medications used in palliative care

The classes of medication most commonly used in palliative care are:

  • analgesics (to treat pain)
  • antiemetics (to treat and prevent nausea and vomiting)
  • laxatives / aperients (to treat and prevent constipation)
  • adjuvant medications (medications that work with analgesics to improve pain or symptom control)
  • steroids (may reduce a range of symptoms related to inflammation)
  • antidepressants (to treat depression, or sometimes pain) and other neuroleptic medications (to treat depression, anxiety, or pain delirium)
  • sedatives (to assist with calmness or sleep).

Some questions you might wish to consider asking your doctor, pharmacist or nurse:

  • What are all my tablets for?
  • What happens if I stop taking any of my medications?
  • What are the side effects of any new medication you prescribe?
  • How likely is it that I will get these side effects?
  • What can be done about side effects?
  • Will my new medication affect any current medications or other medical conditions I have?
  • Are there any tablets or treatments I should NOT have while taking the new medication?
  • What is the cost of the new medication?
  • Can I get the new medication from my local pharmacy, or do I have to return to the hospital for each script?
  • Are all my old medications still necessary?
  • How and when should I take all my medications?
  • Are there any complementary therapies that might help?
  • Will taking this medication mean I need to spend more time in hospital or outpatient clinics?
  • If my palliative treatment is making me feel unwell and not helping to control my cancer can I chose to stop it?

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Last updated:
10 October 2017
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