Recently I was participating in a palliative care consult with a colleague on a hospitalized patient. The patient was on a ventilator in the ICU and unable to participate in the consult. We sat with her family to learn about her life and the things that were important to her. After years of living with a serious illness, the family described how her world got progressively smaller. No longer able to work, her days were filled with medical appts. Her primary connection to the outside world was social media. Her spouse was a devoted caregiver. As her world shrunk, so did his. This was an important reminder to me how long term serious illness changes the landscape of how people live their lives and interact with the greater world.
Recently a friend of mine, also a RN, died after a long illness with Frontal Temporal Dementia. She was my age. For years we worked together in the ICU and then in the cardiac catheterization lab. Ultimately her illness led to her being unable to work. Slowly, over the course of 5-6 years, she lost all of her physical function. Her husband would wash her hair and pin it up in up-dos which was her signature style. As her ability to communicate decreased social visits became stressful and no longer provided the levity and connection they previously did. With time she lost her ability to walk, bathe, and feed herself. She went to a diet of soft food or liquids as swallowing became more difficult, her meals being consumed by a straw.
The last year of her life she was unable to use her phone to communicate. I would reach out to her husband to see if and when I could visit. Unfortunately, severe symptoms such as pain and anxiety disrupted their night/day schedules. They weren’t able to predict when or if she would be in a place to receive visitors. As she approached the end of her life, her husband contacted me and let me know she was close to death and invited me to visit. She experienced some improvement in her physical symptoms after going on hospice. However, she was still plagued by severe pain and anxiety. At the end, I sat with my friend in silence. She was sleeping and briefly experiencing a reprieve from debilitating symptoms.
She died a week after I sat silently in darkness at her bedside. Those of us that worked with her exchanged stories and reflections of her. Tributes on social media highlighted pictures of fun at work, social gatherings and shared vacations. Again I was struck by how once her world was big and vast. With serious illness she and her husband were slowly robbed of social connections, contentment, sleep-filled nights or any resemblance of routine and normalcy.
For most of us our family-life, work, community, and school provide us with a complex social web with interdependent strings connecting us close and far. Technology helps keep us tethered to those in our web. The challenge to us who provide palliative care is to remember the fragility of the strings that connect us all to the wider world. Those in our care are likely to experience an acute shrinking of the outside world.
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