Consumer Enablement Guide

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End of Life Planning and Palliative Care

Palliative care describes specialist services provided by an interdisciplinary team of palliative care professionals, who work with people approaching the end of their life.

End of life planning is the process of planning for end of life and may include plans for palliative care. End of life care describes care provided to people approaching end of life by all health professionals.

What is end of life planning?

End of life refers to the period of time when a person is living with an advanced, progressive, life-limiting illness. End of life planning involves talking to loved ones and health professionals about beliefs, values and preferences for the type of care and treatment the person wants in the last days, weeks or months of their life.

Conversations about end of life should identify:

  • what kind of healthcare treatment they want
  • who should make healthcare and other decisions for them
  • any personal or financial matters that need to be addressed
  • what services and options exist to prepare for death and dying
  • where the person wants to die and who should be there
  • what should happen afterwards, including cultural or religious rituals.

Why is it important?

Most people die after a chronic illness, so end of life planning is particularly important for people with complex and chronic health conditions.1 It can be empowering for the person and their family, reduce anxiety and make it easier for families, carers or guardians to make decisions about their care.

End of life planning and care can also affect the way loved ones manage their own health in the future. Positive experiences can build their confidence, trust and ability to talk openly with healthcare professionals, while negative experiences can lead to distrust and an unwillingness to engage in their health.

It is important to encourage people to plan for the end of their life with their family, carer or guardian. Family-centred approaches have been shown to increase enablement and improve physical, psychosocial and quality of life outcomes in palliative care patients.2 3

It is a good idea to start end of life planning as soon as the person’s end of life is approaching. Starting the conversation early gives the person and their family time to discuss, plan and decide on their end of life care. This gives them more control over their healthcare, and the confidence and ability to access the most appropriate services for their needs.

Palliative care strategies

Palliative care is a specialised area of healthcare and aims to provide the best quality of life for people who are dying, and their families. It focuses on preventing and relieving suffering by providing pain relief and psychological and spiritual support. Here are some ways to support enablement in palliative care.

Person-centred communication

Good communication helps the person and their loved ones understand what palliative care is, so they can make informed decisions. When communicating, it is important to be aware of the words you use, as well as your tone, pitch and body language.

The following skills are particularly useful in palliative care:

  • active listening
  • reflective communication
  • showing empathy
  • providing validation.

Remember, the person and their family are likely to be experiencing strong emotions such as anxiety, depression, anger, vulnerability and loneliness during this time. This may affect how they perceive, react to and communicate with you.

Culturally responsive practice

Cultural and spiritual needs often become more important to people at the end of their life. Palliative care should provide the person (and their family, carer or guardian) with a culturally safe environment. Clinicians and staff should be aware of and responsive to people’s cultural and spiritual needs, through culturally responsive practice.

Families, carers and guardians

Palliative care can be a difficult time for families, carers and guardians. They need to make decisions about their loved one’s treatment and care, as well as manage their own grief. It is important to provide empathy and support, as well as access to grief counselling or peer support.

Working with families, carers and guardians will help you understand the person’s values, priorities and beliefs that will guide their palliative care needs. You can achieve this by using shared decision making, which will make sure the person receives quality care and a safe and respectful end of life.

Care coordination and care navigation

Providing care coordination and care navigation services to people in palliative care, as well as their families, carers and guardians, has shown to improve their experiences and clinical outcomes.4

References

  1. Australian Bureau of Statistics (ABS). Deaths, Australia, 2016. Canberra, ACT: ABS; 2017.
  2. Temel JS, Greer JA, Muzikansky A et al. Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine. 2010;363(8):733-42.
  3. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine. 2014;28(8):1000-25.
  4. Agency for Clinical Innovation. Palliative and End of Life Care: A Blueprint for Improvement. Chatswood, NSW: ACI; 2014.

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