Compassionate, informed advice about healthcare decision making

Archive for March, 2021

Randomness, Death, and Mystery… It’s Okay

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Do you ever do this while reading random obituaries?

I see some person, about my age, who died of cancer. I read on and see it was lung cancer. I’m relieved. Obviously, they smoked. I don’t smoke. I won’t die.

Then, I read, a healthy person about my age dies suddenly from an undiagnosed brain aneurysm. No warning. They just drop dead. A random chance occurrence like a victim of a mass shooting at a grocery store.

We humans look for patterns — for reasons “why.” Some find comfort in the idea (*SPOILER ALERT* — not me) that God is in control of everything and sends some people a quick, unexplained death.

There are no accidents… or not?

I conducted a graveside funeral service years ago as a hospice chaplain. A woman came up to me after the service and told me her story. “A couple of years ago, my eight-year-old son was playing on the swing set in our backyard,” she started. “He jumped off the swing, fell on his head, broke his neck and died instantly. In my grief someone sent me a card that said, ‘With God there are no accidents.’”

I thought (but didn’t say), What a horrible thing to tell a grieving mother. God killed your son. Before I responded, I studied her face to see if I could catch some glimpse of how she received this message. I didn’t have to guess. She told me, “Those words have been so helpful to me.”

I was almost speechless. This woman is a complete stranger and I have no pastoral relationship with her. I would never want to take away a word that was helpful to her. I must have said something like, “I am so thankful that was helpful to you. It must have been a horrible time.”

What do I know? The card may be right.

Everything happens for a reason?

Contrast this with best-selling author Kate Bowler and her book Everything Happens for A Reason: And Other Lies I’ve Loved. The book jacket describes her situation:

“At thirty-five, everything in her life seems to point toward ‘blessing.’ She is thriving in her job, married to her high school sweetheart, and loves life with her newborn son. Then she is diagnosed with stage IV colon cancer.”

Bowler is an academic who has studied the “prosperity gospel.” That would be the megachurch televangelists who teach that if you just believe hard enough (and make a contribution) only good things will come your way. In her research, she saw the downside of this belief is that when you’re thrown life’s random tragedies you are left feeling like a loser.

Do yourself a favor and watch her TED talk on YouTube. Over six million people have viewed this 15-minutes of wisdom. She has learned to live with mystery… with randomness… with not having a “reason.” And it is okay.

Remembering COVID-19 While in the Midst

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me·mo·ri·al| məˈmôrēəl | noun 1 something, especially a structure, established to remind people of a person or event.

A memorial to COVID-19 surprised me at first. Is it too soon?

We usually think of memorials being erected long after the fact. World War II ended in 1945 and its memorial on The Mall in D.C. opened in 2004. At the other end of the reflecting pool stands the 1922 Lincoln Memorial honoring a president who died in 1865.

Also nearby is the Vietnam Veterans Memorial built in 1982 for the war that ended in 1975. This memorial is a particularly moving display of 58,320 names of the war dead. Initially, the design of two granite walls sunken into the ground was highly criticized with one official calling it “a black gash of shame.” It has become a pilgrimage site for families and brothers-in-arms to touch the names of those they have loved and lost. Here, grown men weep at the sight of the name of a fallen comrade.

On a recent walk I was surprised to see a metal engraved marker remembering those who died of COVID-19 and honoring the heroes. It stands in a small park in Leesburg, Virginia, right next to the rails-to-trail bike path. A local Girl Scout troop planted a tree and set the marker at the end of December. The marker reads: “This tree was planted in memory of those we lost during the COVID-19 Pandemic, and in gratitude for the heroes who emerged.”

 

COVID-19 memorial in Georgetown Park, tree and plaque installed by Girl Scout Troop #2718

My surprise stemmed from the fact that this pandemic is far from over. People are still dying in great numbers. We are still wearing masks as a daily reminder to be vigilant. We have been warned deaths could spike again. How can we gain the benefit of a “remembrance” when this event is still unfolding?

Do we need to be reminded?

Hospital staff take a moment of silence to commemorate the year anniversary of the start of the pandemic in Fort Worth

Of course, there have been temporary memorials like the candles at the White House the evening we passed 500,000 deaths. A story and photos appeared in my Facebook newsfeed with medical staff kneeling in prayer next to white flags at the Texas Health Harris Methodist Fort Worth hospital. I am sure they would like to put this all behind them, but they had to go back inside and care for more COVID patients.

Do we need to be reminded about the pandemic? No, but I think we want families of the dead to know that we noticed. What must it be like to have lost someone to a plague that the country is so ready to forget ever happened? Or, at least, we want things to “get back to normal.” The bereaved will never get back to pre-pandemic normal.

Perhaps the Girl Scouts are too young to realize that this pandemic is a once-in-a-century event (hopefully). Do any of us know the long-term effects of months of isolation and remote learning? Does this memorial remember children’s grief over the lost memories of events (like a prom) that could have been but never were?

What about the effect on the elderly isolated in nursing homes who, we know from research, are being prescribed increasing amounts of psychotropic drugs? How do we mark the loss of the mental health of those elders who have just months to a few years to live?

My guess is it will take a generation to memorialize this time. My hope is that we, as a people, will be better because we allowed ourselves to grieve…and to remember.

Don’t Say of Me, “He fought to the bitter end!”

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“Dad was a fighter. We never gave up on him!” they said to each other.

For me, it was one of the saddest scenes I had witnessed since I started working as a chaplain in 1983.

I must emphasize that my interpretation of this scene as being sad is my opinion. This entry is about how I want to be treated in the end…or not treated as the case may be.

Others do want to “fight to the very end” and I can support that. But this case seemed beyond all reason. You can decide for yourself.

On this particular day, I was in the emergency department waiting room with the family of one our nursing home residents who had been rushed to the hospital. The patient was riddled with cancer, literally. He had tumors breaking his skin in multiple places. His body was wasted.

Earlier at the nursing home, I sat with the wife outside the patient’s room while the paramedics were beating on the man’s chest. One EMT compassionately knelt by this woman to tell her that they did not have a pulse on her husband, but they were going to continue CPR and take him to the hospital. He said he was not hopeful that they could save the man’s life. He did an admirable job of breaking bad news.

When the ER doc came out to tell the family that they were unable to revive him they said to each other, “Dad was a fighter. We never gave up on him!”

Fighting battles

This story has so many things to unpack. Ethics. Compassion. Autonomy. “First, do no harm.” Surrogate decision-making. Moral distress of the professionals. Not to mention the patient’s adult children were not speaking to his wife, their stepmother. But I’ll focus now on the language of fighting to the bitter end.

“Keeping Away Death,” sculpture by Julian Hoke Harris, located near Grady Hospital in Atlanta.

We see it often in obituaries, “John died after a long battle with cancer.”

I’m sorry. In my view, this language makes John a loser. What a horrible thing to say about him. Everybody dies. In framing death as a battle lost, we ALL will be losers when it comes to the last act of our lives.

What does this say to the millions of us who read these words and feel ashamed when we have a disease which we know will kill us? We can only conclude, “It’s my fault I am dying.”

Did I allow too much stress to cause me to get sick? Did I not try hard enough? Did I lack faith?

Let me be clear. At this point in my life, if I get a fairly treatable cancer with a good prognosis, I will “fight” it, if you must use that language. I just do not like the battle metaphor when your enemy is death. Death is part of life not its enemy.

“He died peacefully…”

What got me thinking about this is a book I listened to recently as I drove from Oxford, Mississippi to Northern Virginia. Actually, it was two short books in one audio program — Susan Sontag’s Illness as Metaphor (1978) and AIDS and its Metaphors (1988).

What Sontag only barely mentioned in the more recent book was that she was being successfully treated for breast cancer when writing the earlier one and later “fought” and “defeated” uterine cancer. She finally died fighting a rare and very aggressive form of leukemia in 2004. And fight she did.

Her son, David Rieff, wrote a very moving memoir (Swimming in a Sea of Death) about what it is like for a family member to try to support a patient who was dragging herself through a painful dying in the false hope she would be cured.

If you must mention a cause of death in my obituary say, “He died peacefully while living with cancer” or “He died peacefully after months with palliative care and hospice.” Or, better still, “He didn’t give up, he let go and just let things be.”

“Find in Yourself What You Criticize in Another”

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Picture yourself at a restaurant with family and friends. The server places plates of delicious-looking food in front of everyone. Then one of your table companions says, “WAIT, WAIT, NOBODY EAT. I HAVE TO TAKE PICTURES.”

Then she takes out her phone, photographs each plate, and posts them to Instagram and/or Facebook.

When this happens to me, I think, “Oh my god! Can we just eat? Who cares what we are eating??”

The curse of social media: Every event is a photo op

Three years ago, we were living in Florida and my daughter was home on break. Out of the blue she says, “Hey. Let’s go for a walk on the beach.” I was so flattered that my college-aged kid would want to spend time with me. And as a bonus, I could get in a little cardio.

So, we drive over to Jupiter Island, park the car in the parking lot, and start walking north away from the crowds. After about a hundred yards she hands me her phone and asks, “Would you take my picture?”

Sure. No problem.

After about ten shots I hand her the phone. She looks at the photos and says, “Take some with more beach in the background.”

I do. Hand her the phone. She looks at them and says, “Maybe you should stand farther back.”

I do. My cardio op has now become my daughter’s photo op.

Photo ops in the swamp

In December, I posted a blog about my love of paddling in swamps. I really do love swamps. I was disappointed in my last trip to the Chakchiuma Swamp in nearby Grenada, Mississippi. This was back in the fall and we had gone through a dry spell. I could only access a small portion of the swamp for lack of water.

For a couple of months, I have been looking for several days of rain followed by a sunny morning. Last Wednesday was the day even though it was to be 32 degrees at my preferred launch time of sunrise.

It was all I had hoped for. Still water. The rising sun struggling to penetrate the fog. Quiet.

I had been thinking of a video I could make while paddling in this idyllic setting. I have been trying to increase my own social media presence by posting short videos on YouTube and Facebook. My plan was to condense that blog post by recording myself sharing my thoughts while paddling. So, I set up my tripod and mounted my phone.

I shot a video. And another. And another. And many more takes saying pretty much the same thing each time. Most were two minutes, but I shot five that were less than a minute so I could post one on Instagram. I shot seventeen videos in one hour and twenty-five minutes. I added up the times of each video and it came to a total twenty-seven minutes.

My many selves

Almost fifty years ago I was encouraged by an exercise in a book to discover my dark side, to look at my life and “Find in yourself what you criticize in another.”*

Bingo! I turned a wonderful time in the swamp into a photo op.

*From Our Many Selves: A Handbook of Self-Discovery by Elizabeth O’Connor, 1971. I wrote a previous blog about Elizabeth and the influence she had on my life.

Making End-of-Life Decisions for Dementia Patients

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“We didn’t want to put him through that again,” she told me. I wrote previously about my childhood friend eventually dying with dementia after years of decline. His wife decided not to send him back to the hospital.

Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully? I have been thinking about end-of-life decisions for dementia patients because I just was interviewed for a podcast that focuses on helping family caregivers of these patients. Listen to “Rodger That” for my interview and scores of others.

With almost four million copies of my book Hard Choices for Loving People in circulation, I’m pleased to say I’ve received very few negative comments about the book. One person did push back against my characterizing dementia, like Alzheimer’s, as a terminal disease. People don’t die from dementia, they die from other conditions like pneumonia, they said.

Dementia IS a terminal disease

In my view, dementia has all the earmarks of a terminal disease. The patient declines over many years. The general trajectory is downhill although they may recover temporarily from some setbacks. Had they not had dementia they probably would have lived longer. The end is always in death. Sounds pretty terminal to me.

Me and my mother at a memory care facility the year before she died.

As with any end-of-life decision, trying to discern what the patient would have chosen is paramount. Consider this question the physician asked me and my sister after mom fractured her hip in the memory care facility, “How did your mom feel about her dementia?” He didn’t ask whether or not she would want hip surgery. Mom hated, hated, hated losing her mind. It was clear our goal was just to keep her comfortable.

I would venture that everyone fears ending up living their last years where you do not know your family members, are incontinent, and are dependent on others for dressing, eating and toileting. Who wants this?

Then why, oh why would a family decide to save the life of a patient in this condition when they could have opted for comfort care and allow a natural, peaceful death? I think most of us would choose an earlier exit from such a fate.

My mother’s doctor helped clarify this for us with his pointed question. We said, “No. Mom would not want any treatment that would extend her life.”

Letting go and letting be

A word of encouragement to those who may face making decisions for a demented patient: I have found, in general, families are able to get to a place to allow a peaceful death at the right time. The truth is the patient has been dying bit by bit for years. These families have been grieving the loss of all the pieces that make up the person they love — their memory, their health, their expressions of love, and so much more.

When it comes time to say, “Let them go peacefully,” it is just the next step because they have been letting go all along. It is time to just let things be.

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