Monday, October 22, 2018

Another point about suffering

one check, or many
always have a plan!

Here's a follow-up to Friday's post on something Bechor Zvi Aminoff said about suffering, namely that it's a function of care not disease. 

Some people said they were offended, and that his statement wasn't helpful. I think it's the most honest and useful advice I've ever gotten, the ultimate reminder of my nursing role and responsibility.

Also important to note: Aminoff's comment is the result of his pioneering research on suffering, not a careless opinion. 

A colleague recently posted a link and comment on her Facebook page objecting to an account in the New York Times, When the hospice care system fails, as, "unfortunately titled to get clicks." 

She ultimately liked what the author had to say, but her reasoning struck me as a defensive rationalization, a statement of what can't be done, a way to wriggle off the hook: "Hospice... cannot do in one day what could have been done the years, months, weeks preceding a death." 

Two of her co-workers agreed. 

I find their comments, and the ones taking offense at Aminoff's observation, reactive, defensive, and not helpful for the patients and families who are suffering, and who are being failed.

Nobody wants to talk about failure. Or suffering. But the first step to addressing a problem is admitting it exists. Then, it's time for intelligent care - being vigilant and ready to act.

Enter the modified Mini Suffering State Exam, my adaptation of Aminoff's and Adunsky's tool. It's an excellent first step for patients, families, caregivers, and clinicians to work together and share an understanding of what may be ahead - and to make clear that suffering will be anticipated, prevented, and addressed.

I've changed the language for a few items, combined several others, and eliminated scoring. Patients and families facing serious illness and end of life are at risk for all of these aspects of suffering, and the point of mMsse is to direct our assessments to any aspects of suffering that are present and to prompt us to develop a plan.

Suffering isn't a function of disease. There's nothing about heart disease or cancer or Alzheimer's or a hangnail that guarantees suffering will or won't happen. Pain can be assessed and managed. Delirium can be anticipated and prevented. Emotional turmoil and spiritual crises aren't untouchable. 

All of these are precisely the reasons for our skills as caring clinicians. When patients and families suffer, it's either because we didn't get to them, didn't know what to do, or didn't do it effectively enough.

Final news flash - hospices fail all of the time. Some learn and grow from their failures. Many would rather pretend they never happen, or quickly point a finger elsewhere.

3 comments:

  1. I shared this with friends with this comment:

    The Slow Medicine FB group introduced me to this blog, Death Nurse. When I saw this post, it occurred to me [DUH] that suffering in not limited to dying people; many suffer a lot every day, dealing with chronic problems. So, I thought I'd share this in an attempt to help us quantify the suffering in a way others can understand. I am also thinking about ways to use this list (or something like it) in an Advance Directive for Health Care, to help guide decisions. Please share your thoughts and reactions.

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  2. Thanks! Your comments on the earlier post prompted this follow up.

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