Essential Component 2
There are discussions about palliative and end of life care and planning for future goals and needs

Having end of life conversations can be difficult for everyone

Why is this an Essential Component?

Evidence for inclusion

Discussions about end of life issues and planning for care can be difficult for clinicians to initiate. These discussions are multifaceted and take into consideration a range of goals.

Research on end of life decision-making has identified six major types of patient goals:

  • to be cured
  • to live longer
  • to improve or maintain function and/or quality of life
  • to be comfortable
  • to achieve life goals
  • and to provide support for family and caregivers (Kaldjian et al, 2008)[1].

There is also evidence that advance care planning positively impacts on the quality of end of life care. Complex advance care planning interventions involving multiple conversations and planning tools over time may be more effective in meeting patients’ preferences than written documents alone (Brinkman-Stoppelenburg et al, 2014)[2].

Intended beneficial outcomes

  • Patients, families and carers are well-informed about their illness and treatment options.
  • Goals for patient, family and carers are defined, appropriately documented and actioned.
  • Care providers across all settings are skilled in engaging with patients, families and carers on end of life discussions and setting goals of care.
  • There is space and time for patients, families and carers to articulate their fears about prognosis, care and treatment options.
  • Advance care planning is undertaken and documented.
  • Advance Care Plans are regularly reviewed.
  • Preferred place of care and death is articulated, documented and actioned.
  • Enhanced community awareness leads to a better understanding and ability to engage in conversations regarding end of life.
Having end of life conversations can be difficult for everyone

What tools/resources could support the implementation of this component?

The Agency for Clinical Innovation commissioned CareSearch (Palliative and Supportive Services, Flinders University) to identify local, national and international tools or resources that can potentially be used to implement each of the ten (10) Essential Components of Care within the Blueprint.

To be included, tools and resources were required to be in English, be applicable to the Australian context and be supported by evidence (such as published validation studies, clinical guidelines representing expert consensus, or advice from expert clinicians who were consulted).

The set of tools and resources provided is not intended to be exhaustive, nor is any one tool specifically recommended.

About the review process

Core palliative care tools

Advance Care Planning Australia

Australian website featuring information about how healthcare professionals can have conversations with people regarding their future healthcare desires in clinical settings. Includes links to recent publications pertaining to end-of-life care planning and practice implications.

Question Prompt List

An aid for cancer patients, the Question Prompt Lists (QPLs) encourage questioning, thereby assisting them to take up a more active role during visits with their medical specialist.

Physical / functional assessment - palliative care

Needs Assessment Tool: Progressive Disease (NAT-PD)

Clinical assessment tool aiming to assist in matching the types and levels of need experienced by people with progressive chronic diseases (e.g. cancer, heart failure, COPD) and their caregivers with the most appropriate people or services to address those needs.

Needs at the End-of-Life Screening Tool (NEST)

Clinical assessment and outcome measurement instrument for end of life care (Needs, Existential, Symptoms, and Therapeutic).

Core resources

Get it in Black & White Planning Ahead Tools

NSW Government website providing information related to advance care planning, preparing wills and other common questions for individuals, families and carers as well as health and legal professionals.

Case conferences / family meetings

Family meetings in palliative care: multidisciplinary clinical practice guidelines

Guidelines for health professionals working with cancer and palliative care patients developed by the Centre for Palliative Care Education and Research in 2009.

Multidisciplinary Case Conferences

Commonwealth Government specifications for MBS payments for multidisciplinary case conferences.

Multidisciplinary meetings for cancer care: A guide for health service providers

National Breast Cancer Centre produced guide (2005) for health service providers and multidisciplinary team members with ideas and tools to improve multidisciplinary care at a local level.

References

  1. Kaldjian LC, Curtis AE, Shinkunas LA, Cannon KT. Goals of care toward the end of life: a structured literature review. The American Journal of Hospice & Palliative Care. 2009;25(6):501-11.
  2. Brinkman-Stoppelenburg A, Rietjens JAC, 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.

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