Compassionate, informed advice about healthcare decision making

Posts Tagged ‘end of life concerns’

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.”

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.

How to Get to “It Doesn’t Matter!”

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“Pass through this brief patch of time in harmony with nature, and come to your final resting place gracefully, just as a ripened olive might drop, praising the earth that nourished it and grateful to the tree that gave it growth.” Marcus Aurelius, Meditations, 4.48.2, quoted in The Daily Stoicby Ryan Holiday, p. 26

 

My father, Hampton Dunn, age 33, managing editor, The Tampa Daily Times

In many ways, my father’s death wasn’t particularly remarkable. His physical and mental abilities just went downhill and after four years in a nursing home — he died.

And, in many ways, his life was not so remarkable when compared to others who grew up in the Depression and fought in World War II.

Further, in many ways, his emotional and spiritual journey in his last days, months, and years were not unlike hundreds of others I had accompanied during my time as a chaplain.

I’ve been thinking about these things as I prepare for a virtual talk I will give on February 4th on the emotional and spiritual concerns at the end of life. Last week, I listed the seven concerns I have noticed in my work and research. One of the concerns is “Gaining a sense that what is happening is okay: ‘Letting be.’”

Writing became my father’s life

Dad (right), age 49, public relations director, AAA

My father never finished college. It was 1936 in the depths of the Depression. He got his dream job as a newspaper reporter and never finished his degree. Some fifty years later he did get an honorary doctorate from his former school, the University of Tampa. Writing became his life: first at the Tampa Daily Times; then on TV in Miami; then back to Tampa as the public relations director for AAA; and finally, after retiring from his day job at age 70, he went back into TV work.

Hampton Dunn, age 73, TV personality

It was that final TV stint, doing a two-minute spot each week featuring an on-location story about Tampa history, that gave rise to my dad teaching me a lesson on how to prepare for death.

Dad developed Parkinson’s and had to give up writing, public speaking, and TV. He could no longer type or turn the page in a book to do research. He eventually needed assistance for all activities and a nursing home was the only answer.

A moment of insight… and acceptance

Me with Dad, age 82, nursing home resident

One day we picked up dad at the nursing home to go out for a drive. I was driving. My father was in the passenger seat. My mother and nephew were in the back seat. We got stuck at a traffic light in the dense suburbs of North Tampa. Across the intersection, on the far corner, stood an abandoned forest lookout tower. The forests are long gone, and the tower is now a historic site. From the back seat, Mom said, “Your father did a TV spot at this corner.”

Dad corrected her, “I did several!”

Still stuck at the light, I thought I could pass the time, so I asked, “When was that tower last used as a fire tower?”

Dad started thinking. That date was locked in his brain somewhere but the damage from Parkinson’s and strokes prevented him from finding it. Knowledge of history was so important to my father. He had written eighteen books on Florida history and now he could not remember a date.

Slowly he turned to me and with a big grin on his face he said, “It doesn’t matter!” He had gotten to the point of “gaining a sense that what is happening is okay.” Others have characterized this as “acceptance.”

My dad never looked forward to his decline, but when it came, so much else didn’t matter. It was “okay” in the sense that the vast majority of humanity follows this same path of decline toward the end and now he had accepted it, too.

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