Compassionate, informed advice about healthcare decision making

Archive for the ‘“Routine” Care’ Category

Overdiagnosis of Kidney Failure vs Normal Aging

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We are treating elderly people for a disease they do NOT have. These treatments are burdensome, expensive, and make the patients’ lives worse, not better. More on this in a moment.

My friend was having problems with his bridgework and got a consult from a recommended dentist. Upon examination, the dentist said he could replace the old bridge and fix some other problems…for $10,000.

Needless to say, my friend got a second opinion. He went to another dentist who suggested first trying to repair the old bridge for $125 before replacing it. That was five years ago, and my friend says the less extensive solution is still holding.

I will very generously assume that the $10K dentist truly believed all his proposed work was needed. But I imagine the money played some role in the high-ball proposal.

Overtreatment is a big issue

I have written before about treatments pushed onto old folks that have no benefit. Some may even harm the patient. For example, research is clear that feeding tubes for advanced dementia patients offer no benefit and make these poor souls worse. I wrote about this here and here.

Also, the use of CPR offers certain patients no benefit and may make the possibility of a peaceful death less likely. I wrote about this here.

More recently, I wrote about a controversial, newly-approved drug that allegedly treats Alzheimer’s. It is expensive and requires the patient to receive it by IV. Worse, there is no evidence anyone’s life is improved (except maybe the shareholders in the drug company).

Now, what’s new with kidney failure?

The Journal of the American Medical Association (JAMA) Internal Medicine reported that elderly patients are routinely diagnosed with kidney failure, even though their kidney function is actually normal. This is a clear case of overdiagnosis leading to overtreatment. A related editorial also appears in the same issue of JAMA.

In 2002, the National Kidney Foundation published clinical practice guidelines on the evaluation, classification, and stratification of chronic kidney disease (CKD). These guidelines were based on levels found in a patient’s blood chemistry. Patients are classified as “normal/mild,” “moderate,” or “severe.” Those with more severe conditions may be put on dialysis.

What this new research found is that our kidney function declines normally as we age. For most of us, this decline does not affect how we feel, nor does it lead to an early death. Yet, many people are dialyzed just because the “numbers” say they need it.


The JAMA authors speculate about why doctors are reluctant to adopt new guidelines based on research known since 2012. They name three possible reasons: (1) a strong belief in the magnitude of the problem and the importance of early detection; (2) a desire to maintain the status quo; or (3) financial considerations. There is much money to be made when someone is on dialysis.

In 2017, John Oliver did a piece on HBO about dialysis and the financial incentives to providers. Over 11 million people have viewed it. If you have never seen Oliver, be warned — he drops a few f-bombs and makes you laugh at a very serious subject.

This IS very serious. If you are concerned about kidney failure, seek the advice of your trusted healthcare provider. Share this new research with them. Decide what course of treatment, if any, is best for you.

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.”

When does “routine” become “heroic”?

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“Mom never should have gotten the pacemaker,” the daughter said to me. We were sitting at the bedside of the old lady who seemed like it was going to take forever for her to die. Not that anyone involved in this case wanted to hasten death, just not prolong the process.

I asked her about the history of her mother’s pacemaker. “Was there a benefit to her when it was first implanted?”

“Oh yes,” she said. “Her quality of life improved greatly.”

There you go. Treatments are begun at a time when they offer clear benefit to the patient. Sometimes they provide years of benefits.

I have seen this dilemma over and over again. A patient begins a treatment at a time when they are competent and they choose to use a device or medication. Then they get to their last days or weeks and can no longer enter into a discussion about a treatment. So families occasionally feel they are going against the patient’s wishes if they withdraw the treatment.

Increasingly, hospice workers are finding patients with defibrillators surgically implanted in their chests. For patients with a particular type of abnormality, these devices provide a jolt of electricity to the heart if it is out of rhythm. They are a smaller version of what you see on television shows where a rescue squad or an emergency room staff applies the “paddles” to a patient and shocks their heart back to life. There is no question that the implanted devices benefit many patients.

But what if someone is dying?

But what if someone is dying of cancer, respiratory failure or advanced Alzheimer’s disease? The family and medical team know the end is near…perhaps within hours or days at most. The goal now is a peaceful death rather than prolonging a life. So the heart finally gives out only to be shocked back to life. Often the decision is made to turn off the defibrillator.

But wait! Didn’t the patient make the choice to have the device implanted? Are not the family members going against the competent choice of the patient? Technically, they are changing the treatment plan adopted by the patient. But that plan was developed under a vastly different set of circumstances. At the time, perhaps the patient’s only significant medical problem was an irregular heartbeat in need of an occasional shock.

The new information may be that food and fluid intake has ended, the kidneys are shutting down, and the patient has been unconscious for days. It would have been nice to have had a conversation with a patient when they had the capacity about the conditions where they would have wanted the defibrillator turned off. What if a doc had said, “Your disease is advancing. In the end, you may be unconscious for days and not be able to interact with your family. If your heart stops, the device in your chest may shock it back to life. We could turn it off and allow a peaceful death to occur. What would you want us to do if there is no hope of your recovery?”

Rarely, do such conversations happen.

“Under what conditions would you want your ventilator turned off?”

While I was a nursing home chaplain I had the privilege of working with a young man in his 20s who had muscular dystrophy. Bill breathed with the assistance of a ventilator that forced air into his lungs through a hole in his throat. He wanted to do a “living will.” He wanted to assign someone to make medical decisions for him if he lost mental capacity and he wanted to put in writing that he did not want to be hooked up to machines artificially prolonging his life if he were terminally ill. One of the volunteers who visited Bill on a regular basis was a lawyer and he drew up the documents for the patient to “sign.”

Bill was unable to use his hand to sign the piece of paper. He was to give verbal assent to the document in front of witnesses. So before the lawyer, another nursing home staff member, and myself he told us what his wishes were. I signed as a witness to his choices. I was curious. He said he did not want to be hooked up to machines if he was dying. But he obviously was choosing to be on the breathing machine now.

I asked, “Under what conditions would you want your ventilator turned off?” Bill looked to his roommate and said, “If I get like John.”

John was also in his early 20s and had been in a non-responsive condition for several years. A football injury damaged his spinal cord and left him where he could breathe on his own but had no purposeful interaction with the world around him. He received food and fluids through a feeding tube.

Now we knew. Bill was actually transferred to a group home for similarly affected young people and died there a few years later. I do not know if the ventilator was ever turned off.

In the very last days of life the “routine” may become “heroic”

There are many medical interventions that may be considered “routine” under normal circumstances. Pacemakers, blood pressure medicine, and antibiotics to cure pneumonia are just a few that come to mind. But when a patient is in the very last days of life the “routine” may become “heroic” in that the interventions may prolong the life of the patient. Families may choose to withdraw or withhold such treatments in the hope of providing a more peaceful death.

To withdraw is not going against the patient’s wishes. The family is acting as the patient’s agent on the new information that the patient is in the last days of life. Now the goal is to provide for a comfortable death and not to prolong the dying process.


Photo by Steven HWG on Unsplash

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