Helping people to be involved in decisions about their care

What it is

Shared decision-making in palliative care is where a healthcare professional and a person work together to reach a decision(s) about care. If the person requires specific support to be able to contribute then this is referred to as supported decision-making.

In either case, ideally it involves choosing investigations and treatments based on the person's preferences, beliefs, and values, and the best available evidence.

Why it matters

Shared decision-making empowers people to make decisions about the treatment and care that is right for them at that time. This includes choosing to continue with their current treatment, change their treatment or choose no treatment at all. This can include the risks, benefits, and possible consequences of different options, and practical implications of each option (e.g. cost, time, travel etc.)

It also allows people the opportunity to choose to what degree they want to participate in decision-making. Some people prefer not to take an active role in making decisions with their healthcare professionals; they may choose to have the healthcare professionals lead the decision-making process or choose someone (e.g. a family member) to make decisions on their behalf.

In practice

Nurses are well placed to work with and support patients to make care decisions that reflect their needs and preferences.

Patient decision aids

Patient decision aids are tools designed to help people take part in decision-making. They provide information on the healthcare options and help people to think about, clarify and communicate the value of each option to them personally. Patient decision aids do not advise people to choose one option over another, nor are they meant to replace healthcare professional consultation. Instead, they support people to make informed, values-based decisions with their healthcare professional.

Supported decision-making

All adults have an equal right to make decisions that affect their life and to have those decisions respected. A person's right to make decisions is fundamental to their independence and dignity.

There are situations where a person has capacity but needs help in making a decision. For example, a person with dementia, an intellectual disability, a communication disability, or a mental illness.

Supported decision-making is where a person is supported or assisted to make and/or communicate and/or act on their own decision(s). The decision-making is supported, but the decision is theirs.

Supported decision-making can include:

  • extra time for the person to understand information
  • information presented in suitable formats, for example, printed, video, spoken or pictorial information; simple language; small portions of information at a time; questions to check their understanding
  • Alternative and Augmentative Communication (AAC) systems and other communication technology
  • choosing the time where the person’s mental or cognitive condition is optimal
  • help from a neutral interpreter, advocate, or speech therapist.

This information was drawn from the following resources:

  1. Disability Services Division Victorian Government. Supporting decision making: A quick reference guide for disability support workers. Melbourne: Victorian Government; 2012.
  2. NSW Government Communities and Justice. Section 6 - Supported decision making [Internet]. 2020 [updated 2020 Sep 24; cited 2022 Aug 12].
  3. Office of the Public Advocate (OPA). Supported decision-making in Victoria (908kb pdf). Melbourne: Office of the Public Advocate (State of Victoria); 2020.
  4. Phillips G, Lifford K, Edwards A, Poolman M, Joseph-Williams N. Do published patient decision aids for end-of-life care address patients’ decision-making needs? A systematic review and critical appraisal. Palliat Med. 2019 Sep;33(8):985-1002. doi: 10.1177/0269216319854186. Epub 2019 Jun 14.
  5. Sinclair C, Field S, Blake M. Supported decision-making in aged care: A policy development guideline for aged care providers in Australia (1.42MB pdf). 2nd ed. Sydney: Cognitive Decline Partnership Centre; 2018.
  6. The National Institute for Health and Care Excellence (NICE). Shared decision making [Internet]. London NICE; 2021. [updated 2021 Jun 17; cited 2022 Aug 10]. (Clinical guideline [NG197]).

Page created 15 August 2022