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Compassionate Care

Care provided with compassion.

Photo of Denise
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My father recently passed away after a 16 year battle with CLL. I can't begin to describe the experience and how painful it was to slowly watch my hero die year after year. My parents struggled to find appropriate care for my dad in a complicated healthcare system with little to no integration among his providers. In the end they ended up feeling that their doctor was treating him without thought or consideration to his wishes. My father was fortunate to end up at University of Colorado's Anshutz Medical Center in Aurora, Colorado, they have an amazing palliative care team. Had we accessed their healthcare system earlier my father would have had the opportunity to die with dignity either at home or a location of his choosing instead of in a hospital room. The care team compassionately walked us through each stage of his departure and what to expect. It was as if they knew exactly when he was passing away.


I can't say enough about the care team. They were attentive to the needs of 15 people crammed into a small hospital room always looking for ways to make us comfortable and feel supported.


Dying isn't just about the individual who passes from our lives but those they leave behind. We lost our dad but my mother also lost her best friend, companion and husband of 56 years. There was no outreach from any provider to see if she needed counseling or care to walk her through her grief. 


This makes me curious as to why we don't have a plan... for everyone touched by losing a loved one. A woman get's 6-8 weeks for maternity leave when she has a child. Most company policies provide 3 days bereavement when we lose a loved one (and some even go so far as to request proof of death).


The pain is still very fresh and deep from losing an incredible man that I love and respected and there are days I still feel paralyzed by grief. I suppose fortunately for my employer I deal with the pain by working more and spending less time focusing on the pain.  


The photo posted is the man that I will always remember! He had an infectious smile, he was fearless and never afraid to try anything, and he had a quirky sense of humor. He taught me how to live with dignity and live life to the fullest. Never stop striving to make a dream come true. He had a heart of gold with love and compassion for those around him. I'll miss my dad but I know he is in a far better place and free of the pain of his disease. He leaves a legacy behind in all the lives he touched and he will always be in my heart and my actions. 

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

What can we do as a society to support the process of death and dying not only for our loved one's but also those they leave behind.

Tell us about your work experience:

healthcare

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

San Francisco/Bay Area

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Photo of James Takayesu

Denise, thank you for this wonderful post.  I could not agree more that patients and families seek the best care for their loved ones partly out of medical treatment options but mostly out of communication quality.  They want the truth. As a health care system, we must emphasize the importance of these conversations about goals of care, illness severity, and potential for cure within our insurance system - it can't be just about outcomes and procedures.  It must be about quality of life as well.