This month, we honor those who provide palliative and hospice care

Prior to my double-lung transplant in 2017, I was scared of the words “palliative care.” I mistook it for hospice care and thought it meant preparing to die. I was hypersensitive about that because I was waiting on the organ transplant list. If I had known then what palliative care actually entailed, I would’ve tapped into this beautiful resource much earlier.

For National Hospice and Palliative Care Month, I want to share my perspective as a cystic fibrosis (CF) patient.

People typically access hospice care when no other options for medical intervention exist. It helps keep patients comfortable while they are dying. I’ve witnessed this type of care with my loved ones. I’m in awe that this level of care is so deeply personal, and I appreciate the love and specialized services that are offered to everyone involved.

Palliative care provides a holistic approach to treating the whole person. It seeks to be in tune with one’s mental, emotional, and spiritual well-being rather than just the physical aspect. It helps make hospital stays more comfortable and brings another level of support to people with chronic illness.

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Leading up to my transplant, I was frequently hospitalized. Rigorous hospital routines are hard. Living within four white walls, chained to an IV pole, and coughing my guts out made it tough to find joy.

Palliative care provided a glimmer of hope. The team was so kind, caring, and compassionate, and radiated warmth. They took the time to get to know me and tailor my care plan to me as a person.

I began receiving regular visits from reiki practitioners. Reiki helped settle my hyperactive nervous system, allowing me to truly rest. It also brought relief from anxiety and depression.

I met with spiritual directors. This was crucial for me, because God is the center of my life. I was able to process the heavy emotions related to being deathly sick, waiting for a double-lung transplant, and other life changes. It was the support I needed and was in line with my beliefs, which was reassuring and encouraging.

Palliative care felt like a warm security blanket. Most of the time, I didn’t even need to contact members of the team — they just showed up in my hospital room. They asked me what I needed, which provided me with a voice in directing my care. They made me feel seen as a person and like I mattered — two rare things in the disabled community, in my experience.

I think these types of resources are underutilized. Educating people in the chronic illness community about the benefits of palliative care would be useful. Imparting joy to patients is an important part of treating the whole self.

These services bring light to dark times in people’s lives. I’m so grateful for those who offer palliative and hospice care and for the human connection that’s built as a result.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.