Circumstances involving disability, mental health, aging and caregiving are complicated. Individuals and special needs families face dilemmas with ethical or moral implications and those situations range beyond whether or not to have a DNR (Do Not Resuscitate) order.
My daughter Carly recently turned 21, and she has Angelman Syndrome. Our family, and others like ours, wrestle with challenging issues that test our confidence, faith and inner peace. For example, we are tempted to over-medicate Carly’s anxiety or problems with sleep. There is pressure to enroll her in research studies and drug trials for her very rare disorder. We have interest in supporting “curative” organizations and medical research but do not want to cooperate with the use of embryonic stem cells or other practices that don’t fit our values. We have prayerfully pondered the use of medical cannabis too.
The areas of questions are wide-ranging:
Hysterectomy/hormones for behaviors, pain, sensory management
Guardianship vs. conservatorship
Marriage between people with intellectual-developmental disabilities
Crisis hospital situations — this includes trauma or brain injury but can even include seemingly low-risk surgeries where people with disabilities can be vulnerable to Futility-of-Care policies
Praying for healing
Church, please don’t be intimidated by this subject. We need you to lead us and stand with us! Here are some of the ways we are looking to you for help.
We need help developing a biblical worldview for our dilemmas.
Carly and her friends in medically or developmentally complex circumstances need reliable values along with extended families, churches and communities who will support and advocate for them in a culture that is moving towards moral collapse. The world sees God’s ways as impractical and outdated. Our culture makes decisions based on values like happiness, ease, efficiency and economics. We feel entitled to not suffer.
My family wants to sift our decisions through the lens of God’s truth, character and promises, rather than simply weigh pros and cons like an episode of Fixer Upper. We don’t want to become theologians, but we do need help navigating scriptures and uncovering deeper principles that can help inform our decisions. We want options that will ultimately give us peace.
Last month, I spoke at Inclusion Fusion Live on this subject and wrote a detailed article on the Walk Right In Ministries blog. I gave five examples of biblical principles that have helped my family. Having a Gospel-centered framework has been life-lifting, peace-giving and we believe God-honoring. We didn’t arrive at this alone. We had help from Christian friends, did a lot of reading and spent years in prayer. Not every family has the luxury of such resources or time to help them. It is my prayer that these kinds of principles will become more accessible to others — taught by pastors and explored in conversations among family and friends.
We need a community of support for encouragement, confidence and accountability.
Our circumstances can be isolating. A family affected by disability is bolstered to make healthy decisions when they know they will be supported by their extended family, friends and faith community. There are many benefits and opportunities of being in a community that defends life:
Friends and family show compassion, pray with us, lovingly teach and counsel, make referrals, encourage us toward biblical truth and hold us accountable to the values they know we hold dear. They help us make decisions under pressure or raw emotions that we won’t later regret.
Pastors and other leaders give us Christ-centered vision and inspire others to stand with us when life gets complicated. In his excellent and helpful book Why the Church Needs Bioethics, John Kilner suggests that pastors must “model healthy attitudes” and “encourage an atmosphere of mutual care in which the people of God travel together in faith, along with all their doubts and fears and questions, through the valley of the shadow of death.”
Corporate worship shapes our perspectives about God and His ways too. Our times together in the presence of God allow us to absorb the greater mysteries of our faith and increase our confidence in His power and presence among us. That overflows into our lifestyle and decisions.
Every time we help create a supportive system around a caregiver, we extend length and quality of life to both the care-giver and the cared-for. Our practical helps, our emotional encouragement, our spiritual direction and resources undergird them and spur them on in what can otherwise be a grueling slog through life.
We need a pastoral team who comes alongside us when there is a crisis but recognizes the day-to-day concerns too.
Your presence with families is empowering and influential. My friend Mary Kellet, founder of Prenatal Partners for Life, encourages families to invite their clergy or a chaplain to attend Care Coordination meetings. But most families don’t even know this is an option or need.
Sometimes your presence provides reassurance as caregivers advocate for a loved one. Other times, your presence can protect someone’s very life. For example, people with disabilities and traumatic injuries are particularly vulnerable to “medical futility” decisions in hospitals. Many hospitals have internal policies granting themselves the right to decide when it is time to stop all treatment and “allow” a patient to die, even against the wishes of the patient or family. These decisions are based on judgements physicians make about the value or quality of patient lives rather than on the potential for effective treatment or therapy. When a pastor or faith community representative lends credibility to the family’s values, it speak volumes of support to the family and can help hold the hospital accountable to extending their best options for treatment.
Special needs families in your church may also need encouragement to share their prayer requests, especially when they are weighing decisions. People with chronic issues don’t want to sound like a “broken record” with a steady stream of similar prayers but we can lose sight of the day-to-day concerns that would benefit from a broader prayer covering. We appreciate feeling welcome to share on prayer chains but sometimes need help knowing what to ask. Reminders to share how God has answered are helpful too.
We want grace when the answers are not entirely clear.
We only experience true freedom by living in alignment with God’s good design. However, as my friend, John Knight taught me many years ago, “all scripture is equally true but it is not all equally clear.”
As we sift dilemmas through biblical principles, we must boldly assert the indisputable truths and graciously discuss what is not clear.
We need friends and churches who will stand with us valuing the inherent worth, dignity and purpose of our loved ones with chronic health concerns, disabilities and aging-related conditions. But we hope to receive respect, grace and unwavering support when our conclusions are drawn.
Who then will condemn us? No one—for Christ Jesus died for us and was raised to life for us, and he is sitting in the place of honor at God’s right hand, pleading for us. Romans 8:34
I hope you will watch and share the 14-minute conversation-starter because families build confidence and wisdom when they are supported in a community who understands what they are considering.
Church, please help me and my friends make decisions that give our families life and peace.
Additional Resource: Making Decisions About Disability & Suffering from a Biblical World View
Lisa Jamieson is the author of books and Bible studies including the Finding Glory series of resources and a delightful children’s book on prayer called Jesus, Let’s Talk. She is founder-director of the Minnesota Disability Ministry Connection and co-founder of Walk Right In Ministries where she serves as a caregiver coach. Lisa and her husband, Larry, have been married over 30 years and have three grown daughters. Their daughter, Carly, has Angelman Syndrome and lives at home with them in Maple Grove, Minnesota.