End of Life Care

What Is End of Life/Palliative Care?

  • Palliative care is not just care provided in the final stages of life.
  • People should discuss in advance with their doctor, family and carers, their wishes for end of life care.
  • Care can be provided in different settings including the home
  • It is important to nominate an alternative decision maker.

    

End of Life Care is not Euthanasia

  • End of Life/Palliative Care helps people manage their illness, so they can continue to live their life as well as they can.
  • Euthanasia is defined as the act of a third party, usually a doctor, ending a person’s life in response to severe pain or suffering.

Identifying the Need for End of Life Care

  • There isn’t a single specific point in an illness when end of life care begins.
  • The focus will shift from attempts at curing their condition, to that of making them feel as comfortable as possible.
  • Be informed as to the right time to call for further support from home care providers, a hospice or respite provider, or various nursing services.

Plan Early for End of Life Care

  • It’s important for a terminally ill person to discuss their feelings with their family before the loss of their decision making capabilities or a medical crisis occurs.
  • Arrange for legal documents such as a Will, Power of Attorney and an Advance Health Care Directive to be completed to clearly stipulate a person’s wishes.
  • It is advisable to give children clear ‘age-appropriate’ information about the person’s condition.
  • Specialist palliative care units are usually available with a number of different organizations such as nursing homes, aged care facilities and some hospitals.

Care giving in the Final Stages of Life

  • There are some common symptoms experienced in the final stages of life.
  • Every person’s emotional needs differ near the end of life.
  • Reassuring your loved one that it is okay to die, can help both of you through this process.
  • Take time for your last goodbyes, talking or praying, before proceeding with final arrangements.

End of Life Care for Children & Teenagers

  • Services specifically designed for children are based at most of the major children’s hospitals.
  • There are also special hospices for children and their family that provide respite, emotional support and end-of-life care.
  • Children can benefit from being involved in the care planning process.

Care at Home

  • Be fully informed before agreeing to provide end of life care.
  • 24 hour final stage care usually requires additional in-home help.
  • Short term and emergency respite services are available.

Care within an Aged Care Facility

  • Death, like birth, takes its own time and can rarely be accurately predicted.
  • Discuss with the staff if you would like to assist with your loved one’s care.
  • Consider non-medical alternatives to comfort your loved one such as touching, music and fragrances.

Care for Diverse Needs

  • Specialised care services are provided by the government to Aboriginal or Torres Strait Islander people.
  • Services are available for people who have a hearing or speech impairment or do not speak English. 
  • Lesbian, Gay, Bisexual, Transgender and Intersex people in relationships which are not recognized under the law may need to give Power of Attorney to their partners to ensure they are not excluded from decision making.

Families Dealing With A Terminal Diagnosis

  • It is helpful at an early stage for family members to seek guidance on how to anticipate and deal with issues.
  • It is important for family members to communicate honestly with each other. 
  • Anticipatory grief has many of the same symptoms as those experienced after a death has occurred.

Support For Families & Careers

  • It is very important to take time to stay healthy and look after your own wellbeing.
  • Short term and emergency respite services are available for carers to have a break from their caring responsibilities.
  • It can be helpful to consult your doctor and/or a grief counselling service about your caring role.

Advance Care Planning

  • An advance care plan allows everyone involved to know the wishes of the person in regards to their end of life care.
  • Advance care planning should also involve nominating an alternative decision-maker. 
  • You may also want to tell your substitute decision maker how closely you want them to follow your wishes, or whether you allow them to use their own judgement in coming to a decision in certain circumstances.

Cost of Providing Palliative Care

  • Core Palliative Care Services are free in the public health system
  • Private Health Insurance may be an option
  • Personal contributions may still be required for some services

Useful Links – End of Life Care

  • We have provided a list of useful links, so that you may continue with your own research, if you wish to do so.