Compassionate, informed advice about healthcare decision making

Posts Tagged ‘emotional and spiritual issues’

Aging as a Spiritualizing Process — Part Two

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The aging Presbyterian minister prayed, “…God, forgive us for our anger when the nurses do not answer the call bell. And for our annoyance when the food is cold. And for…” This went on for a few minutes. OH MY.

I thought it was a good idea. I was preparing to lead the nursing home’s Sunday morning worship service. I asked one of the residents, Horace, to give the morning prayer. He had pastored for well over 50 years and even performed a wedding for a nurses’ aid while he was a resident. Always the pastor.

So, I stood next to his wheelchair and handed him the wireless microphone at the proper time. He started well enough, “Dear Lord,” followed by some nice things to say about the day and the good Lord. Then the more honest prayer kicked in.

This was not what I had planned.

Then again, I had no idea what it was like to be so dependent on others, especially when those others let you down.

Aging forces us to grow spiritually

Last week, I started exploring “aging as a spiritualizing process.” My plan this week was to unpack an article in theJournal of Religion & Aging on this very topic. I first read that article around the time of the above-mentioned “honest prayer.”

That piece, “Aging as a Spiritualizing Process,” suggests that aging forces some spiritual practices and virtues on us that we should have learned years before. Here are a few bullets from that article:

  • Doing vs. Being: When physical limitations restrict our activities, we finally learn this lesson of the importance of just “being” rather than always “doing.”
  • Contingency: Intellectually, we all know we are going to die. As we age and more of our contemporaries die, it starts to sink in that this fact of death is beyond our control. We “take nothing for granted—thankful for even the next breath.”
  • Enfleshment: Aches, pain, and disabilities bring home the most basic Hebraic biblical understanding that “We do not have a body, we are a body.”

Not Pollyanna

This is no “Pollyanna approach” to aging and disability — no unflagging optimism, no “let’s see what we can be glad about.” And that’s okay. We can also express the honesty of my friend, the praying pastor, who was having trouble with the tardiness of nurses and cold food. Elisabeth Kübler-Ross did list “anger” and “depression” as aspects of dying.

No one put this more eloquently than Flannery O’Connor, the great writer of Southern fiction, who suffered from lupus for 13 years before she died at age 39 in 1964:

“I have never been anywhere but sick. In a sense, sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there’s no company; where nobody can follow. Sickness before death is a very appropriate thing and I think those who don’t have it miss one of God’s mercies.”

Grief Upon Grief, Upon Grief — A Funeral, FINALLY, 42 Years Later

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Can you have a funeral for someone who died 42 years ago? Last week, I wrote about having to delay the burial of my mother-in-law’s ashes for ten months because of COVID. Why not 42 years? In 1996, I officiated this long-delayed funeral, choking back tears.

The summer of 1996 turned out to be a terrible one for me. I went through an unspeakable loss that involved a major betrayal and abandonment. By August, I couldn’t get my dead brother, Randy, out of my mind amidst my grief and sadness. By that time, he had been gone over 41 years.

Randy only lived a week, and never left the hospital. He was born without functioning intestines. It was clear that he would die within days. This was back when children were not permitted to visit hospitals, and I was just six years old. I never saw Randy. I never held him. I did not know what it was like to look upon his face.

And yet, during that summer, I missed him. Fresh grief has a way of bringing up old grief you didn’t even know you had.

The backstory

Mom and Dad were visiting for our son’s high school graduation in 1993. After dinner one evening, Randy somehow came up in conversation. I said to my parents, “Tell me about Randy’s death.”

Instantly, Mom burst into tears. Once she could speak, she said, “My father would not let me go to Randy’s funeral.”

My grandfather was a funeral director and arranged to remove my brother’s body quickly from the hospital. Mom had already been sent home, leaving her newborn son behind to die alone. Dad attended the graveside service, but my grieving mother was not allowed. My controlling, alcoholic grandfather decided it would be better for Mom to avoid the pain of putting her child in the ground.

In somewhat of a defense of my grandfather, this was how things were done in 1954. Avoid the pain and go on with your life as if nothing happened. At the time, funeral directors were the only grief experts. Granddaddy was doing what he thought best.

Nowadays, we encourage the parents, and even siblings, to hold their lifeless child. Some families even wash their children, preparing them for burial. These rituals are such an important part of the grief process.

Fresh grief, old grief

Although I always was aware of Randy’s short life, I can never remember him coming up in conversation until my inquiry in 1993. Just mentioning his name opened the floodgates. My mother carried that huge ocean of grief just below the surface all these years.

Did thoughts about Randy painfully arise when Granddaddy died? Randy died on November 22nd. Did Mom think about Randy when President Kennedy was killed on that same day nine years later? Did she think about Randy at my graduation from high school? I am guessing she thought of Randy all the time. I never knew.

When my father was taking his last breath in 2002, Mom’s parting words to him were, “You’re going to see Randy before me.”

Grief never goes away

Although I was not conscious of it, the loss of my brother was always a part of me, too. It didn’t occur to me until I was in the depths of despair that summer of 1996.

As Thanksgiving approached that year, I got an idea. My daughter and I were going to spend it with my parents in Florida. I decided to go to Randy’s grave and conduct a personal graveside service — a ritual. I called Mom and Dad and told them my plan, inviting them to join me. Mom said, “I would love to. You know what I told you about my father.” Indeed, I did.

So, on Thanksgiving 1996, 42 years after his death, we had a funeral for my brother. Mom, Dad in his wheelchair, my brother, his wife, my daughter, and I gathered at the grave. I read the words of committal (“Ashes to ashes, dust to dust”) and Psalm 23 (“The Lord is my shepherd”), we said the Lord’s Prayer, and I stammered through a prayer about Randy.

We turned toward each other. We embraced. We wept deeply. Forty-two years of sorrow ran down our cheeks.

Never Let a Good Plague Go to Waste

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“Come to terms with death. Thereafter, anything is possible.” —Albert Camus

First, I did. Then, I didn’t. Now I am back thinking about dying. Blame it on COVID…and my men’s group.

In a bygone era — say February or March — the word was people like me, 72 with asthma, were dying in greater numbers than others. Yet, some were going on ventilators and surviving. I told my wife at the time, “If I get COVID, try me on a ventilator for a while.” Then I updated my end-of-life paperwork and wrote a letter to my family about the disposition of my journals. Life got back to normal.… or what now passes for normal.

The news and I have shifted. Though you still hear stories of old people getting off vents and surviving, many do not. Some get off and face years of disability. There actually is some good news in the news, too. Docs are finding less aggressive ways to treat respiratory failure with some success. My new instructions — “No CPR and no vent for me.”

So, I am back to thinking about dying.

It really could happen in short order if I get COVID. And the men’s group? I have been in this group for 28 years. We meet every Thursday at 6AM Eastern time. We have decided to let each guy take a week and retell his life story. Revisiting my story has encouraged me to think like a hospice patient.

I’m going big this time thinking about dying — I’m in life review. Where have I been? What has been the meaning of my life? What is the purpose of human life? What are my regrets? I ask myself the question I have posed as a hospice chaplain to many dying souls: “If you were to die today is there anything that would be left undone?”

In 1585, Michel de Montaigne took his family and fled Bordeaux, France, where he was mayor, to avoid the bubonic plague. (How many mayors around the world today would like a vacation in the country right now?) His term in office was about to end and he had one last official duty in town, attending the transition ceremony. A recent piece in the New York Times continued, “He rode his horse to the city’s edge and wrote to the municipal council to ask whether his life was worth a transition ceremony. He did not seem to receive a reply and returned to his chateau. By the time the plague subsided, more than 14,000 people — about a third of the city’s population — had died horrible deaths. As for the former mayor, he returned to a far more pressing task: the writing of essays.”

He is now regarded as the originator of the modern form of literature we call “the essay.” Like any philosopher worth his salt, Montaigne contemplated death. Early on in my work with the dying, I kept finding him quoted in the literature on death and dying. He titled one piece, “To philosophize it to learn how to die.” Here’s an excerpt:

Knowing how to die gives us freedom

“To begin depriving death of its greatest advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness; let us frequent it, let us get used to it; let us have nothing more often in mind than death. At every instant let us evoke it in our imagination under all its aspects.… To practice death is to practice freedom. A man who has learned how to die has unlearned how to be a slave. Knowing how to die gives us freedom from subjection and constraint. Life has no evil for him who has thoroughly understood that loss of life is not an evil.” Michel de Montaigne, c. 1533-1595

Even before the plague, like anyone in the 16th century, he was quite familiar with death. Besides disease taking lives, Protestants and Catholics were killing each other periodically. It is curious to me that he even felt the need to encourage his readers to contemplate death. How could you NOT in a world surrounded by death? The human capacity to ignore or put off contemplation of death is huge.

I am convinced that I will never fully face my own death until I have a terminal diagnosis. Not only being given the diagnosis, but also having the felt sense in my body that I am checking out. But still, I am trying. COVID has helped move the process forward. I could die. I must be ready. I have decided not to let a good plague go to waste.

 

Photo by Veit Hammer on Unsplash

“Giving Up, Letting Go, and Letting Be” — A Poem

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Giving Up, Letting Go, and Letting Be, By Hank Dunn

— Giving up implies a struggle…

Letting go implies a partnership…

Letting be implies, in reality, there is nothing that separates.

— Giving up says there is something to lose…

Letting go says there is something to gain…

Letting be says it doesn’t matter.

— Giving up dreads the future…

Letting go looks forward to the future…

Letting be accepts the present as the only moment I ever have.

— Giving up lives out of fear…

Letting go lives out of grace and trust…

Letting be just lives.

— Giving up is defeat at the hands of suffering…

Letting go is victory over suffering…

Letting be knows suffering is often in my own mind in the first place.

— Giving up is unwillingly yielding control to forces beyond myself…

Letting go is choosing to yield to forces beyond myself…

Letting be acknowledges that control and choices can be illusions.

— Giving up believes that God is to be feared…

Letting go trusts in God to care for me…

Letting be never asks the question.

 

This poem can be found in both Hard Choices for Loving People and Light in the Shadows.

Photo by JOHN TOWNER on Unsplash

CPR Did It For Me

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CPR did it for me.

Not the procedure ON me but my awakening to the fact that some widely used treatments have little benefit for vast numbers of patients.

I became a nursing home chaplain in 1983 with no experience in healthcare. I was introduced to the standard practice of performing CPR on all patients without a pulse unless they had a “Do Not Resuscitate” (DNR) order. Actually, at our nursing home, the order was “No CPR.”

It is a “death-and-death” decision

That language choice was intentional. The DNR order implies that if you use the procedure the patient would be resuscitated. It was presented as a choice for the patient or family. “Would you like us to resuscitate your mother?” In fact, less than 2% of nursing home residents who receive the procedure have their hearts restarted with CPR. So our order was more honest. “No CPR” meant we would not perform the procedure. You weren’t choosing between resuscitation back to full health or death. There was almost no chance the procedure would work, therefore, you were choosing between CPR attempts and no attempts. I tell people this is not a “life-and-death” decision. It is a “death-and-death” decision. The patient will die no matter what the choice is but one is choosing the nature of the death.

In recent years some facilities have stopped using “DNR” for this very reason. Other terms are gaining in use. DNAR for “Do Not Attempt Resuscitation.” My favorite is AND for “Allow Natural Death.” This implies we are not withholding something, we are just allowing the natural processes to reach their expected conclusion. Letting be.

Cardio Pulmonary Resuscitation started in the late ‘50s as a means to restart otherwise healthy hearts which had failed. Drowning victims or those who have had accidental electrocution were good candidates. It originally was never intended to be applied on patients where death was not unexpected. Slowly, it made its way into all healthcare facilities as a standing order against death.

[As an aside, I would hope, in the event of sudden cardiac arrest, my children or grandchildren would have CPR attempts. I do not have the same hope for my 92-year-old mother with Alzheimer’s.]

CPR has been shown to be virtually ineffective for large groups of patients.

Now, even after decades of “improvements” in the procedure and research into its effectiveness, CPR has been shown to be virtually ineffective for large groups of patients. And we know before we start who some of these patients are. CPR offers no benefit to: patients in the terminal phase of an illness; patients who cannot live independently (all long term nursing home patients and assisted living residents); and patients who have multiple medical problems in advanced stages.

Why?

Why do we attempt to resuscitate a patient when we know ahead of time it will not work?

One of the reasons is that many physicians do not know the truth and/or fail to inform patients or their families about the ineffectiveness of CPR in a particular case. Conversations to inform patients and families take time and can be emotionally laden. So, some physicians take the easy road and never have the conversation or just ask, “Do you want us to resuscitate your mother?” without informing the family that the attempt will not work.

Another reason for widespread use of resuscitation attempts are the unrealistic expectations of the general public, often influenced by television portrayal of patients being rescued by paramedics or hospital personnel. A few years ago study analyzed how CPR was depicted on popular TV shows. On “Rescue 911” 100% of resuscitation attempts were successful, when in the real world only about 15% are successful on all patients. No wonder families inform physicians to “try everything” when they have seen “everything” on TV and it works all the time.

An even greater reason CPR is performed on patients who will not benefit are the emotional and spiritual issues surrounding the “No CPR” order. I had a nursing home patient who was failing and near death. He was still a “full code,” meaning everything should be done to save his life including resuscitation attempts. I spoke with his daughter and explained the ineffectiveness of CPR on patients like her father and that our medical director recommended a “No CPR” order for all such patients. She said, “I know CPR will never save my father’s life, but it is just so hard letting go.”

Symbolic gestures only with no medical benefit.

CPR has become a symbolic gesture. In many cases, we know it has no medical purpose. Yet it allows patients and families to maintain the illusion of holding on, the illusion of control. They can’t let go or let be.

Later in my career, I learned of other ineffectual treatments like IV hydration for dying patients or feeding tubes for advanced Alzheimer’s patients. These have their own illusions for doctors and families but are symbolic gestures only with no medical benefit.

As a pastoral caregiver I see a great opportunity for ministry with those who say they want to “try everything” in face of certain death. There is something else going on when people say they want a resuscitation attempt when they know it to be ineffectual. I say, “Tell me more about wanting CPR. That is a very unusual request for someone in your condition.” The tears and the words come forth. “I am afraid of dying.” “I don’t want to lose mother.” “I hope to reconcile with my father.” These are real issues but CPR attempts do not address them.

Beating on someone’s chest will not take away their fear of death nor reconcile them with a family member. Perhaps a chaplain, social worker, or clergy person could help. Please, somebody tell these people the truth and deal with the real issues behind resuscitation attempts.

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