Special Issue: Advance Care Planning

Advance Care Planning helps individuals think intentionally about their beliefs and what gives their life meaning and beauty. Faith and spirituality are often such sources of meaning for our lives. The process of Advance Care Planning helps us articulate what is most important and provides a firm foundation for our care plan and goals moving forward. Legal documents, such as an Advanced Directive, can turn this invaluable conversation and process into a sense of certainty and clarity moving forward. These conversations and documents also empower people to make their decisions and preferences known ahead of time, easing the burden of decision making on their loved ones when they are no longer able to speak for themselves.

Advance Care Planning also offers individuals and their loved ones the opportunity to live out each and every day of their lives rooted in the very image of God that we are each formed in, as well as the values of each unique, beloved individual. Many sacred moments happen around the final bedside as loved ones hold vigil and share stories about a person’s life, love, and legacy that will live on after their death. Even in the midst of grief and loss, a sense of gratitude exists when we are able to carry out a person’s wishes and values, knowing for certain what they would have wanted.

Advance Care Planning is a gift we can give to our loved ones—it is an offering of peace of mind that helps brings comfort amidst some of the “what ifs” that come with the processes of illness, death, and grieving. Having “the conversation” about health care preferences near the end of life is a way to put your faith-informed values into action. Faith communities can play a large role in building trustworthy approaches to advance care planning that are rooted in respect for the unique religious beliefs and cultural practices of the communities they serve. How? Consider these opportunities to engage in advocacy this month:

For access to Advance Care Planning resources, visit these resource pages for both our Illinois and Wisconsin sites. For more ideas about engaging your community, check out The Conversation Project.

Rev. Ashley Whitaker, M.Div. (right), is the Chaplain Fellow for Ethics for Advocate Aurora Health and a Staff Chaplain focused on Staff Support and Palliative Care at Advocate Lutheran General Hospital in Park Ridge, IL. Her passion for advance care planning stems from a call to walk alongside people through all the places and spaces of life, including six years of local church ministry in rural, suburban, and urban contexts, and a chaplain residency year marked by critical care chaplaincy and the COVID-19 pandemic.

Alyson Capp, PhD, is Director of Ethics for Advocate Aurora Health. She is a baptized member of the Evangelical Lutheran Church in America, and holds Doctor of Philosophy in integrative studies in ethics and theology from Loyola University Chicago. Her experiences engaging in thoughtful and faith-informed conversations about end-of-life care and completing advance directives with her grandparents, parents, and partner have encouraged her in her advocacy for advance care planning.

Advance Care Planning. What it is—What it isn’t.

Advance Care Planning is a process, not an event. Foundational to this process are the following questions: If you were to experience a medical crisis, who speaks for you (your proxy)? When should they make decisions? What should they say/decide on your behalf? How do you ensure they know your preferences/personal values?

Benefits. In addition to those linked here, common Advance Care Planning benefits are improvement in one’s quality of life, lesser likelihood of being hospitalized, and lesser emotional burden on one’s bereaved survivors. While the healthcare community agrees that ACP should ideally begin with your primary care provider at the time of serious illness diagnosis, because of the intimate nature of Advance Care Planning, there remains opportunity for the community to take an active role in facilitating these conversations. There are no standardized or expected responses, so each individual’s Advance Care Planning process is their own, because they are the person to whom it matters most. 

Occasionally opposing forces. Most people exhibit at least baseline trust in their healthcare providers; it is often during times of stress, fear, or great sorrow that members of faith organizations then seek the support and guidance of their faith leaders—wanting reassurance that their choices are aligned with their faith beliefs. According to Daaleman and Dobbs, greater religiosity had a significant correlation to older adults reporting less fear about death, but Balboni et al. also found, specifically in older adults with cancer, greater religiosity significantly related to pursuing all measure of life-sustaining or life-saving treatment regardless of the likelihood of meaningful recovery. There are many faith traditions that believe naming something aloud will cause it to occur, have an inclination toward positive-thinking-only, and have specific prayer practices or rules regarding who participates in one’s end-of-life process that prohibit healthcare teams from attempting to address patients’ spiritual needs—a one-size-fits-all approach cannot work.

Shawndra Ferrell, DNP, APRN, FNP-BC, ACHPN, an Advanced Practice Nurse and Inpatient Palliative Care Program Lead at Advocate Trinity Hospital in South Chicago, holds Doctor of Nursing Practice from Loyola University, Chicago. Shawndra's goal as a leader in nursing: "To inspire, motivate, and encourage others to collaborate, on behalf of our patients, in pursuit of a common goal: to help those who are most vulnerable in our communities by increasing awareness, offering support, and providing resources in areas which they can no longer do for themselves or else they would."

Share this the bulletin insert and worship slide with your faith community to raise awareness of how advance care planning benefits you and brings peace of mind:

Bulletin inserts on many other topics are available in our archive.

Download this infographic, courtesy National Institute on Aging

Advanced care planning can begin by first having a conversation with your family members and other loved ones. You can share your wishes, such as who you’d like to make care decisions for you when you can’t, the types of medical treatment you want or don’t want, how comfortable you want to be, how you want people to treat you, and what you want your loved ones to know.

The following resources can provide guidance to help you get the conversation started.

This document from the Pew Charitable Trusts features stories from a geographically and theologically diverse group of religious communities from across the United States and offers advance care planning tools. Across the examples discussed in the report, four themes emerged:

"These experiences demonstrate that, for people of faith, preparing for death can be not only a gift they provide to their family, but also a way to express their faith in God’s plan; it can be an expression of religious gratitude for life and the anticipation of a better world," the report says.

Download Starter Kits to help you begin these important conversation with those who matter most. See state-specific advance care planning resources here.

A website resource full of practical solutions, tools and resources for having those tough conversations about the critical decisions that need to be made as people age and face life-threatening illnesses. Created by a pastor who has worked with people and their families in congregations and in hospice and who has also worked through these issue with her own aging parents.

The worksheets are designed to help you think about the many aspects that are part of overall health and about some of the issues that arise in cases of chronic or acute illness. There are no right or wrong answers to these questions. They are simply guides for your thinking.

You may want to answer these questions privately or you may want to sit down with a family member or friend and go through them together. Some people have found it helpful to discuss the questions in a small group from their congregation or of friends.

AARP offers information on starting advance care planning discussions, facilitating discussions with adult children about end of life planning, and printable forms.  

American Bar Association Advance Care Planning Toolkit:

The American Hospital Association has advance care planning resources from some states hospital associations and a Put It In Writing brochure for patients and families to document their wishes.

Cake is an interactive end-of-life planning website that helps people plan ahead for healthcare, legal, funeral, and legacy decisions. A checklist guides users to create and store important documents that express their final wishes. Users can share secure access to their end-of-life plan, which can be created with the Conversation Starter Kit, with anyone who has an email address. Cake’s mission is to empower everyone to receive end-of-life care that aligns with their values and wishes. 

The CDC offers selected resources for the public, including:

Five Wishes is a legal advance directive document that helps adults, regardless of age or health, to consider and document how they want to be cared for at the end of life. 

MyDirectives.com allows consumers to digitize their voices and treatment priorities in a comprehensive legal advance care plan that is secure in the cloud and available 24/7 anywhere in the world. MyDirectives also offers a Discussion Guide and Conversation Starters to help people have discussions with doctors, family and healthcare agents.

Offers information on:

The African-American Spiritual and Ethical Guide to End-of-Life Care is a culturally sensitive resource for African Americans to use as a way to talk about advance care planning options and end-of-life issues with their loved ones.

The Guide offers trusted and relevant information, complete with helpful resources and free access links to advance care forms by State, so you can choose the right one.

A book that addresses the practical and spiritual questions we face when considering our own death or that of someone close to us. Eight UCC pastors and writers offer insight, advice and clear-eyed consolation in such reflections as:

To commemorate National Health Care Decisions Day, Bishop Anderson House will present an informative virtual workshop on Advance Care Planning. Learn how to talk to your family about what matters most, as the Rev. Tommy Rogers walks you through the Five Wishes booklet used in our Spiritual Care Visitor Training. We have learned from COVID-19 that not one of us knows what is around the corner. Completing a Five Wishes document can give not only you, but those who are dear to you, comfort and confidence that your wishes and desires about end of life treatment will be honored.

April 1: Maundy Thursday - Christianity

April 2: Good Friday - Christianity

April 4: Easter - Christianity

April 8: Yom HaShoah - Judaism

April 12: Hindi New Year - Hinduism

April 13: Ramadan begins - Islam

April 13: Baisakhi - Sikhism

April 15: Yom Ha'atzmaut - Judaism

April 16: National Healthcare Decisions Day

April 20: First Day of Ridvan - Baha'i

April 21: Rama Navami - Hinduism

April 23: St. George's Day - Christianity

April 24: Lazarus Saturday - Orthodox Christianity

April 25: Palm Sunday - Orthodox Christianity

April 27: Hanuman Jayanti - Hinduism

April 25: Mahavir Jayanti - Jainism

April 30: Holy Friday - Orthodox Christianity

April 30: Lag B'Omer - Judaism

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We hope you find this update helpful as you promote the health of your members and community. Please contact Cindy Novak if you have questions or topics you'd like us to address. Thank you!