Written by Connie Carpenter Phinney 

In addition to our regular panelists, July’s Care Partner Meetup featured a special guest: Dirk Labuschagne.

Dirk has worked as a chaplain in the Neuropalliative Care Clinic at Rush University for the past three years. Originally from South Africa, he is involved with chaplaincy training at Rush University and was trained at a Presbyterian seminary. As usual, Davis Phinney Foundation Executive Director Polly Dawkins was our moderator.

In addition to reading these notes, you can watch a video recording of July’s meetup below. Also, consider subscribing to our YouTube channel to be notified every time we upload a new recording. 

Our next Meetup will be on August 6, 2024 and will feature the return of another special guest, Mark Mapstone, PhD. If you haven’t already signed up to attend our sessions live, you can do so today.

MEETUP NOTES

Palliative Care Defined

At the start of the meetup, Dirk explained that palliative care aims to help you live as well as you can for as long as you can. This practice involves physical, emotional, and spiritual support and is often facilitated by the collective effort of professionals such as Dirk. Palliative care focuses on providing relief from symptoms and improving quality of life for those living with serious illness.

THE Chaplain’s Role

Dirk clarified that a chaplain isn’t providing answers to life’s existential questions but spends more time listening to patient and caregiver concerns. At their best, a chaplain creates anxiety-free space for a person who is wrestling with their own beliefs and questions. The chaplain’s role involves being a conversation partner, and Dirk said that he often does this work directly with care partners.

Describing his work, Dirk said he might start by getting acquainted and asking us how we see the world and about our belief structures and values. From there, Dirk said that a chaplain might help us sort out the question of how illness works and why difficult things happen. While there are no easy answers, Dirk said a chaplain should give space to ask and discuss the hard questions.

Dirk added that he spends much of his time with care partners because so few of us can be truly honest to others about how we’re feeling, and the kind of questions and struggles that we have are unique. Acknowledging the scope of the care partner’s experience, Dirk said, “Sometimes it’s helpful to just have a kind of separate space to really say, ‘Goodness, this is hard. I’m struggling, and this is not how I pictured my life.’”

What is the difference between a chaplain and a minister?

Dirk explained that a ministerial pastor is a leader in a specific religious community while a healthcare chaplain usually has a graduate divinity degree including year-long training and 2,000 hours of supervised experience to become a healthcare chaplain. In the healthcare setting, chaplains are trained to be mindful not to impose their own beliefs. They understand how vulnerable the population they work with is, and their work is to provide support and comfort, most often by listening.

Chaplains sometimes receive a referral from the doctor who says the patient is kind of disillusioned and not currently active in a church but would like to meet. Dirk said it’s important for a chaplain to meet every person where they are in terms of their own past spiritual experience and start with the more reflective aspects of prayer and meditation and being open to dialogue and reflecting together.

How do we find a chaplain?

Start with your healthcare provider. If you are seeing a specialist at a movement disorders center or neurology clinic you might ask what kind of resources they have available. The clinic may not have a chaplain who’s dedicated to that team, but there may be a chaplaincy department within the hospital or hospital system. In our conversation, Dirk noted that it sometimes takes some advocacy from the physician to reach out to that department to connect you. If possible, ask for a chaplain trained in the neuropalliative care clinic.

Some listeners suggested talking to friends who might help you find a church that could provide this service. Whether through a clinic or a church, a key point is you won’t find a chaplain if you don’t seek them out. You must start somewhere and will probably need to be persistent.

Gail talked about rituals being helpful to stop our brains from constantly beating us up. Creating ritual can help you feel less guilty or judgmental, and this can ultimately give you a break. She said she wished she could put her brain on a shelf to stop it being so active, especially when her husband, who passed away from Lewy Body Dementia three years ago, was suffering.

Pat said when things get tough, it’s good to take a moment to breathe and accept we’re here in this life to be challenged, grow, and progress. In thinking this, he’s able to convert the challenge to opportunity.

What does a good day look like?

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