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Lack of support in the end of life experience

Insights from a less than ideal end of life experience that lacked support when it was needed

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The person I was interviewing had had a family member die of cancer relatively recently, and witnessed/experienced an end of life process that was sorely lacking in support.

When the news was first broken to the patient that he had only 4 months to live, there was no follow-up appointment proposed to discuss or help him deal with this information, or how he should move forward.

After some persistence by the interviewee, he was seen by another doctor who proposed starting him on chemo even though he had such a short prognosis. Naturally the family were keen as it felt like they were doing something & fighting it (even though it may not have been what the patient himself wanted), so it commenced - with the ensuing pain, appointments, stress etc. It led to him having weakened bones & falling and breaking his leg - but the hospital insisting on focusing on the chemo and not on the leg pain which was affecting him more acutely. It took more hassling of the hospital to finally get his leg fixed.

What is a provocation or insight that might inspire others during this challenge?

Why isn't end of life support provided as a given when terminal illness news is broken? It seems like there's some available, but only to very few. How could we make this more accessible? As the patient, it's easy to lose your voice amongst doctors focusing on extending your life and family members wanting to feel better/in control. How can we make sure the patient's voice is heard?

Tell us about your work experience:

I work in design as a strategist; my experience is mainly brand and packaging design strategy but i'm interested in moving into more purpose-driven design, and social/healthcare innovation.

If you participated in an End of Life Storytelling Event, tell us which Chapter or city you came from:

London (Helix Centre)


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