It’s COMPLICATED–Attitudes about Dying

I will admit to the fact that I have pretty strong feelings about life and death issues.

• I hold to the belief that quality of life supersedes quantity of life. 
• Although I understand the practical reasons that nursing home residents and older people in general are the top priority for COVID vaccinations, I struggle with the concept that young people—with most of their life ahead of them—must wait for someone like me—with most of my life behind me—to get vaccinated.    
• When the hospice spiritual advisor asked my mother-in-law if she had ever considered stopping treatment, she said no, that her goal was to live to one hundred and that she didn’t want to miss anything.  To be honest, the thought that ran through my mind was, “Is there no end in sight?”
• I thought my daughter-in-law’s mother exhibited profound courage and strength when she decided not to treat her stage four cancer after an unexpected diagnosis.
• I support the perspective expressed by Ezekiel Emanuel in his article “Why I Hope to Die ant 75,” which appeared in the September 2009 edition of The Atlantic. (Emanuel was recently named to President Biden’s COVID-19 Advisory Board.)
  
  http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/
  

“It is Emanuel’s contention that―whereas death may deprive us of experiences and milestones; of time spent with our spouse, children, and grandchildren; indeed, of all the things we value—living too long is also a loss. It renders us disabled, or at least faltering and declining. It robs us of our creativity and ability to contribute to society and the world.

Even if we manage not to become burdens to our children, our shadowing them until their old age is also a shortfall. It transforms how people experience us, relate to us, and remember us—no longer as vibrant and engaged—but feeble, ineffectual, and pitiable. It is indeed such memories that are the ultimate tragedy.

Americans might live longer than their parents, but they are likely to be more incapacitated, both physically and mentally. Although we are growing older, our older years are not of high quality. Health care has not slowed the aging process so much as it has slowed the dying process.

So, yes, I am in agreement with Emanuel. I want to die with respect and without aggressive care—no ventilators, feeding tubes, dialysis, surgery, antibiotics, or any other medication—other than palliative care; in other words: no life-sustaining interventions. A do-not-resuscitate order and a complete advance directive have been written and recorded (even if I am conscious but not mentally competent). I do not want my “consumption” to outweigh my ‘contribution.’”

What to Do about Mama? pp. 300-301

I also admit, ITS’ COMPLICATED.

This becomes abundantly clear in The Caregiver Space article, “The Ventilator:  Life, Death and the Choices We Make at the End”,  November 19, 2020, and its accompanying Hidden Brain Podcast.

The Ventilator: Life, Death And The Choices We Make At The End | The Caregiver Space

In the Podcast John Rinka tells his wife’s story. Stephanie was a nurse with a strong opinion about quality and quantity of life (much like mine).  Together they had ongoing conversations about end-of-life issues, and Stephanie was always unequivocal—she wouldn’t want to be kept alive if her quality of life was gone. But then Stephania became a victim of ALS and the Rinka family discovered that choices prefered when we’re healthy may no longer make sense to us when confronting death.

 As John Rinka shares:

• Seemly rational choices you make when you are happy can change when you are facing death.
• “I can’t live that way” becomes “I want to see tomorrow.”
• When there is no more hope, every day just gets worse. 
• She could have lived peacefully with dignity but brought misery upon herself and her family.
• We were overwhelmed with daily challenges and the progressive decline.
• The feeding tube was a big decision but when Stephanie chose the ventilator I was floored; this was not the way she ever wanted to live.

Their son Jason shares with us as well:

• It was like having two moms.  One, the rational mom and experienced nurse; the other, the mom who wanted to live until tomorrow.
• The mistake is in thinking you know the choices you would make in the moment.
• She wasn’t thinking rationally–but only, “I’ll have tomorrow.”
• I don’t want to go through that—I don’t want to be a burden to my family. But the reality becomes: “Are you ready to leave this?”

Most poignantly, John sums is up by saying: “I would relive any of those days before the ventilator, but there’s not one day you could pay me enough money to relive after the ventilator. 

We all have more than one version of ourselves, each with different desires. 
Fear, confusion, and love make easy decisions difficult. 

Another interesting perspective is expressed in the January 21, 2021, Barbara Karnes article:  The Scar In Your Heart: Grief In End of Life Care

The Scar In Your Heart: Grief In End of Life Care – BK Books

Karnes received a comment from a hospice nurse who said:  “The JOY of hospice was mine for years.  I could easily see the beauty in almost any end-of-life situation. Then, my dad died on our service in 2015. I continued to work for hospice for the next three years but after my dad died I couldn’t see ANY beauty in end of life. I completely walked away in 2018. I don’t know how to “get it back.”

Barbara Karnes responded that when someone in a professional role is facing a loved one’s end of life, they are confronted with entirely different perspective. The dying is personal and therefore has a different impact. Entering a patient’s home after the death of a loved one touches and rubs the professional’s grief wound. 

Caring for people at end of life has its own unique challenges.  Hospice, Palliative Care and Home Health agencies need to deeply support their staff or they will suffer from compassion fatigue.