INPCS Blog: Voices in Neuropalliative Care
Meaningful Connections: Balancing the Art, Science, and Mystics
Ambereen K. Mehta, MD, MPH, FAAHPM
It was a usual day in ALS clinic – busy and intense, yet full of meaning. Unexpectedly, our clinic’s nurse practitioner asked for my help urgently with one of our patients.
She led me down the hallway to another clinic room where I found my patient lying, pale, barely breathing on the gurney. I had never met him or his wife in person before. The first and last time I spoke with them both was by video for a telemedicine visit. He had been referred to me because he was suffering from severe panic attacks related to shortness of breath that was the result of his progressed ALS. We were trying to find ways to provide him with relief including meditation and medications, and today’s in-person visit was to follow up.
During our first video visit, I was struck by his conviction. Despite being in a constant state of panic, he was so clear about his wishes. He shared he was not afraid of dying and was firm in his beliefs about what lies on the other side. He knew he did not want to prolong his life on machines. When it came time for him to need continuous life support, he wanted to be made comfortable. His peace with these decisions transcended the physical gap between us...
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Introducing the new INPCS Blog!
The INPCS Strategic Communications Committee (SCC) is thrilled to announce the launch of the new INPCS blog, Voices in Neuropalliative Care. This blog will showcase all voices in neuropalliative care, from persons living with neurologic illnesses and their families to providers and researchers.
Do you have experiences, ideas, thoughts, reflections, poetry, or artwork related to neuropalliative care? We invite you to submit your work! Whether you are a clinician, person living with a neurologic illness, carepartner, or advocate, your voice matters.
Looking for topics to write on? Here are some prompts to consider:
- Why is neuropalliative care important to you?
- What does neuropalliative care mean to you or someone you know?
- Do you have reflections on challenges faced in the field of neuropalliative care?
- What does quality of life mean to you? How do you define quality of life?
- How do you find meaning in your life in the midst of challenges (“meaning making”)?
- What does living well mean to you? How do you live well with your neurologic disorder?
- How have others helped you live well?
- What helps you cope while experiencing compassion fatigue?
- In the most difficult/challenging of times, what brings you comfort?
- What positive and/or negative experiences have you had in the realm of serious neurologic illnesses?
- What does it take to travel on an unfamiliar road?
Have something to say but not confident in your writing? No problem! We have team members on the SCC who can interview you to hear your story and help put your story into writing. Email info@inpcs.org and let us know of your interest in meeting with an SCC member.
Instructions for submitting: Posts can be approximately 300 to 800 words long. Photos/videos/artwork with permission are encouraged. Email submissions to: info@inpcs.org
Questions? Reach out to the SCC at info@inpcs.org
