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Quality

One's last days are eternally significant.

Photo of Daniel Zimmerman
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As a Certified Wound Ostomy Continence Nurse Specialist I work with many patients in their last days of life on earth.  I have seen patients' last days be filled with joy as they choose to focus on loved ones.  I have also seen the dysfunction and misery of patients and families who are unwilling to accept the inevitable.

Just because we (health professionals) CAN do something, doesn't mean we should.  Most patients who are approaching the end are not given the big picture.  Why is it that the same doctors who are performing last ditch efforts on patients would never actually want them done on themselves?

The truth is, the BEST case scenario for these patients (any health professional who has been practicing for at least a few years can point out a patient who is at the end) is that they make it through these painful, grueling, delirium enducing procedures, only to be a much weaker, more opioid dependent, confused, and miserable form of themselves.  That is the BEST case scenario...and it happens only a small fraction of the time.  Most cases follow their logical conclusion with that patient having multiple complications and coming to a painful end in a cold harsh hospital (sorry for the grim picture).

We can do better than this.  I believe it starts with better communication between health professionals and patients.  We all need to do a much more thorough job, WITH THE PATIENT AND FAMILY, of laying out a detailed, realistic picture of what it means to enable patients to end their last days, months, sometimes years, in a way that is sacred to them and their families.

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Photo of John McGeehan

Hi Daniel, thanks for sharing your firsthand experience. You raise two very interesting points:
1) Knowing better the consequences of a 'last ditch' effort can lead to better-informed decision-making, like Katy Butler's contribution https://challenges.openideo.com/challenge/end-of-life/research/a-good-day-to-die-my-mother-died-like-a-warrior .
2) Health care professionals, who know only too well the consequences and risks of last-minute extreme interventions, usually refuse them when they are faced with the same decision.
By shedding more light on what is possible, and telling all stories - painful, peaceful, scary and blissful - we all benefit... beginning to learn or relearn a language to discuss death and dying.
Thank you also for your valuable, caring work to our dearest relatives and friends!

Photo of Shane Zhao

John, thanks for highlighting these important points from Daniel's post. Phyllis also echoed a lot of the issues that Daniel brought in her post Death on the ICU , where she noted that 88% of physicians say they would not want the aggressive end-of-life care their patients endure. This really nudges us to consider why there is a disconnect between what patients experience and what health-professionals knowingly provide.

Daniel suggestion to create better channels of communication between health professionals and patients will be something important to consider when we start to explore new possibilities in the upcoming Ideas phase of this challenge:-)

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