The Role of Spiritual Care in ALS: Q&A with Lana Kim McGeary

Spiritual needs are a part of life, and a spiritual care professional has an important role on an ALS multi-disciplinary team. We sat down with Lana Kim McGeary, who has been a spiritual care professional on the MUHC ALS Clinic team for 13 years, to discuss the role of spiritual care and how it may benefit people living with ALS, their caregivers and loved ones.

Q: What are spiritual needs? How would you define it?

Lana: Spiritual needs are a part of life and have been part of our human story since the beginning. They are about how you frame your worldview, what gives sense and meaning to your life, and what helps you get through the challenges of life. Spiritual needs will vary from person to person, but everyone has spiritual needs, including people who are not overtly religious. These needs may be related to family, or work, or another area of life. They may be expressed in a multitude of ways, such as art, music, nature, and/or community.

Q: What is specific about clinical spiritual care?

Lana: Spiritual care is a non-confessional clinical service adapted to the needs of working in a hospital setting. To become a spiritual care professional, one must hold a minimum of a bachelor’s degree in the science of spirituality and religious practices, theology, or other connex field, and have at least one 800-hour clinical stage done within a hospital setting. Further, in Quebec, my mandate comes from the patients and caregivers, and not from any religious institution. So, that means, spiritual care is as relevant for someone who is agnostic as someone who belongs to a religious institution. Pastoral care on the other hand is practiced within a specific religious institution, where the person is trained to provide help within this community setting, it further requires a mandate from a religious institution.

My mandate comes from patients and caregivers.

Q: How can someone living with ALS benefit from spiritual care?

Lana: I help people tap into and adapt their inner and outer resources as they deal with health issues and grapple with questions of identity and world view. Some such issues might be about justice and injustice, the “why me?” and “what is value of my life as my physical abilities change?”, “what does belonging look like as my capacity to be outwardly ‘productive’ changes”. Spiritual questions can become very important because they can help the ALS clinic team know what things are important to an individual. We can help them create structures to protect and cultivate quality of life for as long as possible, even with the physical changes and losses that come with ALS.

Q: How do you work with people living with ALS, their families and caregivers throughout their disease journey?

Lana: I generally meet people at the beginning of their entry in the clinic and follow them and their caregivers throughout their process. I sometimes meet people who have been diagnosed with ALS and their caregivers or family members who have different levels of acceptance about the diagnosis. This can result in a complex dynamic, which may hinder communication, connextion, and quality of life, and can create conflict within families.  Even though the person with the diagnosis has ALS, often the whole family is going through the ALS journey with them.

One of the benefits a spiritual care professional can provide is that we can offer people a safe place to share their feelings honestly and openly. People don’t need to be careful about what they say to me, or how I’m going to react to what they’re saying. Sometimes I’ll see a person with ALS and their caregiver separately to allow them to really express what they’re feeling without having to edit. For example, a session with a caregiver alone gives them the opportunity to express their feelings – whether that be anger, frustration, fear, and/or grief. They may be grappling with taking on tasks that were previously done by the person with ALS, as well as feeling overwhelmed with the idea of how they will live without their loved one. Being able to express this openly without worrying about how it will make their loved one feel can help alleviate some of the suffering around this. If they’re open to it, I can then meet with the two of them together to help foster open communication.

Q: What are some of the things that people living with ALS and their families/caregivers/loved ones can do to incorporate spiritual care into their day-to-day lives?

Lana: They can sit down, alone and/or with their loved ones and ask themselves to reflect on their answers to the following questions:

• • What gives meaning to your life?
  • Where and when are you happy?
  • What is sacred to you?
  • What brings you joy?
  • What are the things you can’t live without?
  • What are the things you can let go of?
  • How do you define quality of life?
  • What is the purpose and value of a life?
  • What helps you get through hard things?

Q: How do you work with the ALS multi-disciplinary team?

Lana: As a spiritual care professional, I always maintain awareness within the clinic that people with ALS are complex people with whole stories, whole challenges, and histories. I gather these stories from people with ALS and caregivers and hold space for them. If the stories are relevant to their care and I am given permission from the individual, I can translate these back to the team, so that our care can take these needs into consideration.

I always maintain awareness within the clinic that people with ALS are complex people with whole stories, whole challenges, and histories.

For example, I may meet someone at diagnosis, create a connection with them, understand what their motivations are and follow them throughout their disease journey. So, when there is an intervention milestone needed, I may have input from previous conversations with the patient that I can share with the team. From the outside it might look like nothing’s happening, but as my supervisor often said, spiritual care is 90% stacking wood so that you’re there for the 10% of the time that someone needs you.