A few of you asked me to clarify what I said in one of my last posts in the Sustainable Chaplain:
Re-making health care to be about health, as hospice makes death about hope, is an earthquake to the medical model of fixing ....
How can death be about hope?
I am answering it here because hope is al best practice for hospice and palliative care. It is also the roots of reconciling with loss of any kind.
• Hope is NOT about putting on a happy face sticker (...over an empty gas tank dashboard indicator).
• Hope is NOT about accenting the positive...like the song in the musical
• Hope is about grounding in the truth of where we are, and asking the question:
What is it you hope for?
Where we go from here... depends upon where we are at presently.
Most hospice teams tend to disrespect and disregard the benefits of denial. In my training for 'companioning' those in loss, I paraphrase my professor here:
Denial is useful and self-protective... to a degree...but don't take it away.
- Dr. Alan Wolfelt, Center for Loss and Life Transitions
It takes time to gather ourselves, to approach the unknown...and death is the great unknown. How do we live with uncertainty?
We need practice at it - to live with uncertainty. What is it, really, but just another day of cleaning out your closets of old baggage...or vacuuming the dust bunnies. But if you have NEVER cleaned the closets of old stories and concepts that are not longer useful to you, it's going to be a bigger job than if you did had done it regularly. It makes sense that even dust bunnies can be overwhelming when you when you have avoided and accumulated them for a lifetime.
Metaphysical dust bunnies
I am attempting lightheartedness here, but it is also true. If you avoid all notions of EOL dust bunnies, your task at the end of your days here will be tougher.
Why not write down what YOU want when you are no longer able to say? Why NOT make a will? Telling your loved one's what your wishes are in this tender valley of our humanity is a great gift that will lighten the load of deciding when you can no longer do it for yourself.
Why do we spend our days pretending that we will not get old, never get to our end on this good Earth? I see a direct relationship between denial at the end of life (EOL) and messy closet hygiene. Like anything, we need practice for these big milestones. Many people do their best NOT to show up for death - anyone's death - even their own. They don't visit sick family members; they try not to visit even their own mother at the end because they 'don't want to remember her THAT way'.
I am saying...this life is practice for our own good end.
I have seen many family members collude in this EOL denial by multiplying it by THEIR OWN denial. Or holding out 'for a miracle' until that dying breath...so there is not time to reconcile, to say goodbye, to forgive the dust bunnies of feud and disconnection which are blocking the door.
It is the door to a 'good death'. (This is not an oxymoron.)
In hospice, we say a good death is a peaceful death where the pain is controlled. The measure of pain is TOTAL pain. This includes emotional pain and 'spiritual' pain. We are now back to the original question of this post:
How might hospice make death about hope?
The answer here is:
• Hope meets between the possible and the probable.
• Hope is common ground
• Hope takes many forms...
The A.M.E.N. Protocol*
Many folks look for a miracle. They pray that they be spared the bitter pill of loss. It can look a lot like denial. It may be and it may not be. Statistically, prayer beats most miracle drugs for beneficial outcomes. As a chaplain it is important to stay engaged in this difficult, INCREMENTAL and iterative conversation. In fact, there is a palliative protocol for it. It is called the A.M.E.N. Protocol.
• Affirm the patient's belief. (I hope with you...)
• Meet the patient or family where they are. (I join you in hoping and praying...)
• Educate from the role as a medical provider (...and here are some medical issues..)
• No matter what: assure the patient and family you are committed to them...no matter what happens...(We will be with you every step of the way...") which tends to be more doable in hospice than palliative...
It asks the question: "For what purpose is this miracle?"
"The physician may respectfully inquire. He or she might learn,...that a man's first grandchild will be born in a few months. The hope may be to simply cradle that baby for a few sacred hours before succumbing to his disease. The physician, on inquiring, may learn that a mother hopes for remission to see the last of her children graduate from high school or college. Hope takes many forms. 'Even dying people have work to do or work to finish: relationships to enjoy or mend, goodbyes to say, lessons to teach their families.' The only sure way to know what hope means for the individual is to inquire, respectfully and reverently."
Even if the patient (and or family) are insisting on a miracle. The miracle may be just another day to wait to see their daughter flying in from the East coast. It is what hope looks like at the end.
Please find the PDF for further reference. This is a brilliant and useful study.
* Cooper, Ferguson, Bodurtha, and Smith. The Sidney Kimmel Comprehensive Cancer Center, John Hopkins, Baltimore, MD. Download PDF here: