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What are the best strategies to engage patients and families in ACP conversations and documentation?

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Advance care planning (ACP) is the process of discussing and documenting your preferences and values for future health care decisions, especially in situations where you may not be able to speak for yourself. ACP can help you and your loved ones prepare for the unexpected and avoid unwanted or unnecessary treatments. However, many people find it difficult or uncomfortable to initiate and sustain ACP conversations and documentation. As a patient advocate, you can play a vital role in facilitating and supporting ACP for your clients and their families. Here are some of the best strategies to engage them in this important process.

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1 Start early and often

One of the key principles of ACP is to start the conversation early, before a health crisis or decline occurs. This can help you and your clients explore their goals, values, and preferences in a relaxed and respectful manner, without the pressure or stress of an emergency. Moreover, ACP is not a one-time event, but a dynamic and ongoing process that should be revisited and updated as your clients' health and circumstances change. Therefore, you should encourage and assist your clients to have regular and timely ACP conversations and documentation with their health care providers, family members, and other trusted people.

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Victoria Church

CNS Associate Director for Office of Nursing for Enterprise Standardization U.S. Department of Veterans Affairs
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I have found the conversation must start early prior to hospitalization. During a primary care visit, or even brought up in the faith community such as church. Considering a national be prepared campaign with powerful stories about what happens when unprepared. When I updated my will my lawyer had it as part of the process.

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Kirsten Protherough

Experienced GP@ Home Visit Healthcare | Chair of The Community Hospital Association | Frailty Education And Training
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In my experience talking about ACP is always easier when there is not an acute crisis, in the UK we are looking to improve our Recognition of patients living with frailty who are at risk of a deterioration via various scoring systems (electronic frailty index), Rockwood frailty scale, Edmonton scale, PRISMA7, Timed up and go test. By recognising those at risk of a deterioration we can then ensure we have the important conversations with them. Those conversations about what "Matters Most" to them and their wishes of how they would like to be treated and where in case of a deterioration. In the UK we have the @RESPECT form which is a key document for all patients living with frailty and helps guide treatment. Important topic, thankyou

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2 Use appropriate tools and resources

There are many tools and resources available to help you and your clients engage in ACP conversations and documentation. Some examples are: questionnaires, guides, videos, worksheets, online platforms, and legal forms. These can help you and your clients prepare for, structure, and record ACP discussions and decisions. However, not all tools and resources are suitable or relevant for everyone. You should consider your clients' needs, preferences, literacy, culture, and language when choosing and using ACP tools and resources. You should also ensure that the tools and resources are consistent with the legal and ethical requirements of your jurisdiction.

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Victoria Church

CNS Associate Director for Office of Nursing for Enterprise Standardization U.S. Department of Veterans Affairs
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Even consider including when you file state tax as then it can be specific to the state POLST laws. Or easy website with links to state specifics.

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3 Build trust and rapport

Another essential strategy to engage your clients and their families in ACP is to build trust and rapport with them. This can help you establish a positive and supportive relationship that fosters open and honest communication. To build trust and rapport, you should: listen actively and empathically to your clients' concerns, fears, hopes, and wishes; respect their values, beliefs, and choices; acknowledge their emotions and offer support; use clear, simple, and respectful language; avoid jargon, assumptions, and judgments; and show genuine interest and care for your clients and their families.

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4 Address barriers and challenges

Despite the benefits of ACP, there may be some barriers and challenges that prevent or hinder your clients and their families from engaging in ACP conversations and documentation. Some of these may be: lack of awareness or understanding of ACP; fear of death or losing control; reluctance to burden or upset others; disagreement or conflict among family members; cultural or religious beliefs or practices; or practical or logistical issues. As a patient advocate, you can help your clients and their families overcome these barriers and challenges by: providing education and information about ACP; addressing myths and misconceptions; facilitating dialogue and mediation; respecting diversity and sensitivity; and offering solutions and options.

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Victoria Church

CNS Associate Director for Office of Nursing for Enterprise Standardization U.S. Department of Veterans Affairs
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Again also why faith based houses of worship are excellent to engage. Allows the benefit of being able to answer conversations surrounding death and dying and what might be roadblocks emotionally to assure these types of documents are completed pre emergencies.

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5 Collaborate with health care providers

Finally, one of the best strategies to engage your clients and their families in ACP is to collaborate with their health care providers. Health care providers play a crucial role in initiating, conducting, and documenting ACP conversations and decisions. They can also provide medical advice, guidance, and recommendations based on your clients' health status, prognosis, and goals of care. Therefore, you should work closely with your clients' health care providers to ensure that they are aware of and respect your clients' ACP preferences and values. You should also communicate and coordinate with them to ensure that your clients' ACP documentation is accessible, accurate, and up to date.

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6 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

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Rebecca Love RN, MSN, FIEL

Nurse. Innovator. Author. Speaker. LinkedIn Top Voice, First Nurse Featured on Ted.com, Forbes Business Council, President Emeritus: SONSIEL, Chief Nursing Officer
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In my experience, many people “assume” they have expressed their preferences to their families - that their loved ones know “I never want to be kept alive on a ventilator” or “if X was to happen don’t do Y to keep me alive”. However often, what one assumes to have communicated often is interpreted differently by different family members. The best way to ensure that one’s wishes are followed it is create a list of advanced directives that are written and documented, and if you can be done with a healthcare provider. For families although these are difficult discussions, it is much better to have them in advance, than during a time when one is unable to communicate and families negotiate between themselves treatment for their loved one.

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What are the best strategies to engage patients and families in ACP conversations and documentation?

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3

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6

1 Start early and often

2 Use appropriate tools and resources

3 Build trust and rapport

4 Address barriers and challenges

5 Collaborate with health care providers

6 Here’s what else to consider

Patient Advocacy

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What are the best strategies to engage patients and families in ACP conversations and documentation?

1

2

3

4

5

6

1 Start early and often

2 Use appropriate tools and resources

3 Build trust and rapport

4 Address barriers and challenges

5 Collaborate with health care providers

6 Here’s what else to consider

Patient Advocacy

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