Guide to Advance Care Planning

My Gift of Grace

 John Bernardo/Common Practice

Most people don’t want to think about end-of-life issues. Certainly, there are more pleasant things to think about. All patients who have COPD are at high risk of having to make tough choices in the event of a severe COPD exacerbation that may render them dependent on a breathing machine (also called a ventilator) for either a short period or long period of time. Research studies have shown that patients who don’t prepare for end-of-life decision making are more likely to receive aggressive and potentially unwanted care, such as being on a ventilator. What’s more is that families of patients who do not talk about their wishes ahead of time experience significant burdens, stress, and depression after taking on the role of making decisions on behalf of a loved one.

Advance care planning is a process that consists of discussing end-of-life issues, clarifying one’s values, beliefs, and preferences and then recording those preferences in written documents called advance directives (e.g. a living will or healthcare proxy). The benefits of engaging in advance care planning are well established in that patients who performed ACP with their families were less likely to have stress, anxiety or depression, and reported higher levels of satisfaction with their hospital care. Advance care planning benefits family members too, and research shows that family members of those who engaged in advance care planning with their loved ones had experienced less distress and anxiety after making medical decisions for their family member.

Many resources are available to help patients and their families engage in effective advance care planning. Below we list three resources that have been ‘backed’ by research and may help guide individuals various components of a comprehensive advance care planning process.

1) Online Decision Aids

Making Your Wishes Known is an interactive, online decision aid that is backed by extensive research, including patients with COPD. The program, which is available free of charge, takes an educational approach, using an interactive question-answer format that includes audio, text, graphics, patient vignettes, and videotapes of “professional experts.” Additionally, the decision aid helps individuals identify who they would want to make medical decisions if they could not do so themselves, and what decisions they would like to make. Making Your Wishes Known explains several health conditions and medical interventions (such as mechanical ventilation, dialysis. and feeding tubes) and takes users through several exercises that help them to articulate and clarify their values and goals related to medical care. At the end of the program, users can print and share a personalized, legal advance directive. The program is easy-to-use and research studies have shown that the program is not only satisfying for participants but produces an accurate advance directive.

The program is available at

2) Workbook 

Your Life, Your Choices is a detailed workbook (available online) that patients and their families can use to learn about advance care planning, decision-making, and common health states. In addition, it has exercises that help readers elicit their values and beliefs about end-of-life issues and decision-making. The workbook provides documents for writing down advance care plans and also advice on how best to communicate one’s preferences to others.

3) Games

My Gift of Grace, an end-of-life conversation game, offers a creative approach to the challenges of getting people motivated to talk about end-of-life decision making. By framing the conversation as a game, My Gift of Grace provides a safe forum which players have enjoyable, satisfying and realistic conversations about end-of-life care. The game consists of 47 cards that prompt players to consider and discuss a multitude of issues related to medical decision making, death and dying. The questions were developed after extensive consultation with over 100 clinicians, patients, funeral directors, designers, and others. Research has shown that the game may motivate those who have otherwise not considered performing advance care planning to do so, and is a good starting place for those wishing to start conversations about these issues but may not know how. Most who play My Gift of Grace have positive experiences and find the tool to be engaging, fun and a good forum for opening up discussion.

The Bottom Line

All patients with COPD should talk with their loved ones about their values, wishes and beliefs regarding preferred care in the event of a serious medical illness, including a COPD exacerbation. Doing so can help to ensure care received at the end of life is consistent with one’s wishes. A multitude of resources exists that can help patients and families be well informed and better prepared for medical decision-making.

For more information and resources about advance care planning, visit the National Healthcare Decisions Day website at

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Article Sources

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