Advance Care Planning: Reclaiming Love & Faith in Times of Illness
Rev. F. Keith Stirewalt PA MBA MDiv Chaplain Advance Care Planning Coordinator Independent Living Donor Advocate Husband, Father, and Grandfather Ukulele Player, Trouble Maker Wake Forest Baptist Medical Center
Purpose of My Presence & Ministry …create increased awareness of the importance of meaningful family conversations about illness and death before a medical crisis …help to emphasize these conversations and times of serious illness as Holy moments encountered in sacred space and sacred time Wake Forest Baptist Medical Center
Points to Ponder • 70-80% of those surveyed want to die someplace other than the hospital • Just because we can, should we? • There are things worse than death • There is no greater privilege than dying surrounded by those who love us…and those we love Wake Forest Baptist Medical Center
Theology & Ministry Insights from the Pastorate, Chaplaincy & Clinical Medicine • Most medical personnel are just as conflicted in the interaction of faith and serious illness as the general public • Lots of anecdotal (backed up by formal studies) evidence that those who describe themselves as devout Christians: • Struggle more with their deaths • Utilize more futile health care • Are late (if at all) adopters of hospice Wake Forest Baptist Medical Center
Thesis Statement: We are too prone to interpret severe illness and death as a time of darkness where God moves away from us…rather than to recognize God’s light in the dark spaces of our life Wake Forest Baptist Medical Center
The ICU – Wrong Time/Wrong Place Wake Forest Baptist Medical Center
Moravian Traditions of Death – 1700s • When death anticipated, person surrounded by their choir or immediate community • Favorite scripture would be read, favorite hymns sung • Kept as comfortable as possible • Surrounded by those whom they love…and by those who loved them • What have we lost? Wake Forest Baptist Medical Center
What Have We Lost? • We have distanced ourselves from death • We have treated illness and death as unnatural and contrary to our human nature • We have failed to realize the sacred space and time that can and should be present at the end of life…we fail to see and feel God’s presence during times of great sadness Wake Forest Baptist Medical Center
Darkness & Light – A Chaplain Clinician’s Focal Point 11If I say, “Surely the darkness shall cover me, and the light around me become night,” 12even the darkness is not dark to you; the night is bright as the day, for darkness is as light to you. Psalm 139:11-12 (NRSV) Wake Forest Baptist Medical Center
Two Theological Issues Encountered • Illness is God’s punishment for something we or our parents did. “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned;” • “If I treat my body right and stay right with the Lord, I’ll never get sick” (failure to understand the Deuteronomistic covenant, trying to cash a check that God did not write…) Wake Forest Baptist Medical Center
Advance Care Planning: • A plan/conversation indicating preferences for future healthcare in the event that a person is unable to make or communicate health care decisions • It’s about conversation and process • When thoughtfully addressed, they are gifts of love and justice
Advance Care Planning (ACP) – The Question How do we want to be treated at a time when we are sick and will not recover…and have it done in a way that honors our story, our community, and our beliefs? Wake Forest Baptist Medical Center
Conversation of Love: • Relieves some of the burdens associated with making medical decisions for someone they love • ‘Conversations before the crisis’ give some measure of reassurance that loved ones are following the patients wishes, hopefully reducing some of the emotional burden
Conversation of Justice • Institutional Distrust • Recognition • Reconciliation • Not everyone views the institution of health care as having their best interests. Experimentation, grave robbing, and eugenics are but a few reasons for institutional distrust. Creating legal documents may help to alleviate suspicion and fear
Key Point • As long as a patient is able to demonstrate Decision Making Capacity, he or she is the sole spokesperson for the type of care that they want to receive (or want not to receive) • Therefore, Advance Care Planning does not rob any capable patient of this decision making authority
Medical Decision Making Capacity Abilities needed for medical decision making capacity • Ability to appreciate the nature of one’s situation and the consequences of one’s choices • Ability to understand the relevant information • Ability to reason about the risks and benefits of potential options • Ability to communicate a choice
Common Barriers to Advance Care Planning – Patient’s Perspective • “If my doctor brings it up, he/she is not telling me something!” • “My doctor will tell me if I need one” • “My doctor will think I am giving up on them” • “I’m afraid to die and don’t want to talk about it” • “I don’t want to be abandoned” • “I don’t want to die in agony” Wake Forest Baptist Medical Center
Common Barriers to Advance Care Planning – Family’s Perspective • “If we talk about it, it will happen” • “I don’t want them to think I’m giving up on them” • “I’m afraid God is punishing them…or me” • “This is just another way for the hospital to save money” • “I’m already grieving…I don’t want to discuss it” Wake Forest Baptist Medical Center
Common Barriers to Advance Care Planning – Clinician’s Perspective • “ACP is only for last days of life” • “ACP does not work & might complicate care” • “ACP discussions will take too much of my time” • “I’m here to cure people, not help them die” • “ACP discussions have to be led by lawyers” • “ACP discussions will make sick patients anxious, lose hope, and die sooner” Wake Forest Baptist Medical Center
Thoughts for us all… • Would your loved ones know what is important to you if you became seriously ill and had no chance of recovering? Are you sure? • Would they be able to take their love for you, their knowledge of what you hold as important, their knowledge of your relationship with God, and mold this knowledge into medical decisions honoring your choices for life and end-of-life? • Who will be your voice? Who will speak for you? Wake Forest Baptist Medical Center
Advance Directives: • Legal documents providing potential medical decisions and/or designating decision makers should the patient temporarily or permanently lack decision making capacity • In our setting, these documents include: • Health Care Power of Attorney (HCPoA) • Living Will (Desire for a Natural Death)
We need an advocate to speak for us, when we have lost our “voice” due to illness • Beginning at the age of 18 • For those who are ill • For those who are well • At the least…a discussion with our loved ones • Optimally…a formal document naming a health care agent…we choose our advocate Wake Forest Baptist Medical Center
What is a Health Care Power of Attorney? • A legal document naming a health care agent to make decisions for you when you are not able to make those decisions for yourself • ONLY goes into effect when you cannot make and transmit a decision • Creates certainty as to the person who can make your medical decisions Wake Forest Baptist Medical Center
What can your health care agent do? Make all health care decisions for you, including: • Starting or stopping life-prolonging measures • Decisions about mental health treatment • Choosing your doctors and facilities • Reviewing and sharing your medical information • Autopsies, organ donation, and disposition of your body after death Wake Forest Baptist Medical Center
The statutory list of Medical Decision Makers, in order of priority, is: • Health Care Agent appointed in a Health Care Power of Attorney document • Legal guardian of the person • Attorney-in-fact appointed in a general durable power of attorney document that includes power to make health care decisions • The patient’s legal spouse • Majority of patient’s reasonably available parents and adult children • Majority of patient’s reasonably available adult siblings • An individual with an established relationship with the patient who is acting in good faith and can reliably convey the wishes of the patient • If there is no one in the hierarchy of representatives who is reasonably available, the attending physician may treat the patient without consent, if there is confirmation from a second physician of the patient’s condition and the need for treatment
Questions to ask ourselves when choosing a health care agent • Who would I want to make decisions for me if I could not? • What would I consider my goals for medical treatment if I permanently lost the ability to meaningfully know who I am, who I am with, and where I am? • How would I want my life experiences, values, and religious, personal, and cultural views to inform and affect my medical treatment? Wake Forest Baptist Medical Center
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