Sunday, July 24, 2016

Hope is a Hot Button

by Kathy Kastner

As life draws to an end, hot buttons need only be barely touched to set off flares of righteousness. Hope is one such hot button, and often seems attached to ‘false’ – which crushes hope dead. I rail every time I hear the righteous pronounce:

“You don’t want to give them false hope.’

Why is hope so contentious when benefits have proven huge? From Dr. Jerome Groopman’s The Anatomy of Hope:

"Belief and expectation -- the key elements of hope -- can block pain by releasing the brain's endorphins and enkephalins, mimicking the effects of morphine. In some cases, hope can also have important effects on fundamental physiological processes like respiration, circulation and motor function.”

To put this into more precise perspective: we’re not talking about someone who hopes to be a singer, but can’t hold a tune; a would-be hitter who is embarrassingly uncoordinated, a woefully unqualified businessman who hopes to be president (wait, maybe that’s not hope..)

‘Hope’ for these purposes refers to someone who will never recover or get better.

The arguments I’ve heard against giving hope that is most likely doomed to be ‘false’ are many, and many seem logical – although not necessarily from the patient’s point of view.
  • Reason #1 They need to face the fact that they are dying
  • Reason #2 It’s not fair to the patient to lead them on
  • Reason #3 If things don’t work out as expected, they’ll be devastated
  • Reason #4 They’ll feel betrayed if they find out you were leading them on
For me, these reasons have nothing to do with the patient, and everything to do with anticipated emotional and practical mop-up that may fall in the laps of those who hold out hope – however false it may be..

The BIG hopes and the smaller hopes

But wait: not all hopes have to be BIG hopes: hope for a cure, permanent remission, return to ‘normal’. The beauty of the spectrum of ‘hope’ means it doesn’t have to be a ‘huge’ hope to be of benefit.

At life’s end, hope needs re-framing

Up until life’s end, there are still things to hope for, like the 103-year old woman who hopes to live to vote for the first woman president, or Garry’s hope - having been diagnosed with esophageal cancer a month after his wedding: Preach on Mother’s Day.

Smaller hopes count and can be so much more achievable, like hoping to
  • Sit up and look out the window
  • Pat the cat
  • Feel the breeze
  • Get a foot massage
Dr. Robert Roose MD MPH, tells the story of Samuel, a middle aged black man, 8 months into a diagnoses of Stage IV gastric cancer.

“He was in constant pain and the one thing that brought him joy – eating – was unbearable."

One day, Roose decided to do something different: asking Samuel if there was anything he wanted.

“I want something to eat. Can I eat something? I want an orange, a Valencia orange.”

And so the doctor did a very un-doctorly thing – sped across the road to the nearest fruit stand and bought a bagful of Valencia oranges. Which Samuel promptly devoured, skin and all

“He knew how it was going to end. The vomiting would start any second. Death would follow soon. He was having it his own way, on his own terms, with both life and death in his grasp, spraying, dribbling, and running all down his face. It was his moment.”

Was that the Big Hope - a peaceful passing? Doesn’t sound like it. But for Samuel, he got what he longed for and hoped for. A Valencia Orange.

A profound experience for Dr Roose who says,

“Samuel, I thank you for letting me be part of it.”

I submit that, instead of asking of those en route to the end, “What are your goals of care?” instead ask:

“What are you hoping for?”

It’s an opportunity to be generous of spirit, and perhaps even the rabid anti ‘false-hope’ crowd can sign up for.

We invite you to join us this Wednesday to talk about hope at the weekly hospice and palliative medicine/care chat on Twitter using the hashtag #hpm.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 7/27/2016 - 9p ET/ 6p PT
Host: Kathy Kastner Follow @KathyKastner on Twitter.

 and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Kathy Kastner was motivated by what she learned on #hpm to create BestEndings.com. Now, she is considered an ePatient evangelist for palliative care, did a TEDxTalk, and is regularly invited to speak on the topic.

This post was originally published on Pulse (LinkedIn.com). It has been published here with permission of the author.

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