Compassionate, informed advice about healthcare decision making

Archive for the ‘“Heroic” care’ Category

Could COVID Be the New “Old Man’s Friend”?

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Here’s the question: Should a nursing home resident with dementia get the COVID-19 vaccine?

There is no question that nursing home residents are at a high risk of dying should they get the coronavirus. That also goes for the underpaid and overworked staff who care for these vulnerable patients. One might think, “Of course, vaccinate them all.”

Not so fast.

I started thinking about this after reading a recent article from the bioethics think tank The Hastings Center, “Too Taboo to Contemplate? Refusing COVID Vaccination for Some People with Dementia.”

Just a month ago I wrote a blog post, “Making End-of-Life Decisions for Dementia Patients.” In it I wrote, “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?

Dena Davis, J.D., Ph.D., takes a similar approach in her Hastings Center article. She states the obvious: that if a person had declared in an advance directive that in the case of advanced dementia, they would refuse vaccines for flu or pneumonia, then that would also apply for COVID-19 vaccine. But, what of the patient who does not have a written advance directive or has failed to give such specific verbal directions?

Dr. Davis refers to several surveys where people expressed their preference to die sooner rather than spiral down with dementia. In one survey, more than half of the respondents were either “very unwilling” or “would rather die” than live in a nursing home. In another study of seriously ill but cognitively competent people a majority believed that either incontinence or “being confused all the time” were states equal to or worse than death.

We hardly need a scientific study to convince us that losing our minds and being totally dependent on others is a state almost all of us want to avoid. Now, a novel coronavirus comes along that is especially hard on elderly nursing home patients. It is also hard on the caregivers and vaccinating patients is partly to protect these folks and their families.

I agree with Davis’s personal preference that if she had dementia and was confined to a nursing home, she would give her surrogates instructions to withhold vaccines. Me too.

Once, pneumonia was thought of as “the old man’s friend” – a relatively peaceful way for the elderly to die, a welcome visitor. Dr. Davis speculates, “Could the novel coronavirus be today’s old man’s friend?”

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.”

“Grey’s Anatomy” and CPR on Television

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True confession: I have joined my 22-year-old daughter in binge-watching Grey’s Anatomy during the pandemic. Over 300 episodes viewed and counting. I now know about “10-blade,” “clear!” and the importance of declaring “time of death.” Also, I never knew there was so much romance and sex going on in hospital supply closets and on-call sleeping rooms. Now I know.

Grey’s Anatomy (currently in its seventeenth season) follows Dr. Meredith Grey and her fellow surgeons at a Seattle teaching hospital. She started out as a young, single intern and is now a widowed mother of three small children as well as the chief of general surgery. The show is very engaging, depicting extremely dedicated and hard-working doctors. Most are compassionate, empathetic and caring.

CPR is on TV…but it is not realistic

 A staple of medical dramas is the “code.” A heart monitor starts beeping loudly, a doctor starts chest compressions, another grabs the paddles of a defibrillator and yells, “Clear!” Sometimes the first shock gets the heart back in rhythm but most often it takes a couple.

While it seems like all of the cardiac arrests on Grey’s are with a “shockable rhythm.” In real life only about 10% of cardiac arrests are shockable. Medical journals have exposed the unrealistic depiction of CPR on medical dramas.

Why dedicate medical research to the topic? The general public develops a distorted view of the success of the procedure. In 1996, the New England Journal of Medicine looked at CPR on Rescue 911, Chicago Hope and E.R. and found survival rates vastly higher than the actual 17%. On Rescue 911, 100% of those receiving CPR survived.

In 2015 the journal Resuscitation calculated the CPR survival-to-discharge success rate at 50% for House and Grey’s Anatomy. That doesn’t happen in real life. But if 83% of the CPR patients died on TV, not many people would watch it and the sponsors would probably complain.

I have written before about the futility of CPR for large categories of patients. In the years between the fifth (2009) and sixth (2016) editions of Hard Choices for Loving People, the survival rate inched up from 15% to 17%. It is not that the procedure has gotten better. The clinicians are getting better at advising patients and families about who will NOT benefit from CPR. Survival rates have improved because we are doing LESS CPR.

DNR is a big deal

Occasionally on Grey’s, the characters discuss “code status” — whether a patient should have a Do Not Resuscitate (DNR) order. (See my blog on my preference for AND — Allow Natural Death.)

On the show, it’s the patient who is often ready for the docs to write the order so they can have a peaceful death. The family — or even the physicians — sometimes resist. In my experience, this is very realistic. Real-life patients usually come to the conclusion that they are dying before their families or doctors. Their own bodies tell them it is time. This is information others do not have.

The DNR is a big deal. It serves as a sign that it is time to prepare for a comfortable and dignified death. And, on this, I do give Grey’s credit for getting it right.

Slow Down, You Are Doing Too Much

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“Let her go in peace,” was my bottom-line message.

ER trips, IV antibiotics, bulb syringes … all had become extraordinary measures … in my view.

A woman called me out of the blue yesterday. A hospice worker had given her my Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness. I am not exactly sure what she wanted from me as she talked rapidly and pretty much constantly through our close to an hour on the phone.

This never-married woman was the primary caregiver for her 96-year-old mother. The old lady had suffered strokes and dementia was advancing. Because of the swallowing difficulty the daughter was forcing food into her mother’s mouth with a bulb syringe. This is a rubber device, shaped like a tear drop. You suck food into the bulb then stick the narrow end into the patient’s mouth and force the contents out.

Medical professionals encouraged the daughter to slow down

It sounds like the medical professionals in both hospice and the hospital have encouraged the daughter to slow down. But she has sent her mom to the ER three times over the last several weeks. “Maybe if they just give her some IV hydration she would start eating better,” her logic went.

Having listened for about a half hour I asked her, “What is the future for your mother?”

“She is dying.”

Bingo. She said what I was hoping for. In hundreds of such conversations over the years I have asked questions to help caregivers come to their own conclusion about the big picture.

Dying people stop eating and drinking at the end of life. Dying people probably will dehydrate leading to a more peaceful and compassionate death. Dying people talk less and sleep more. Dying people can get aspiration pneumonia once known as “the old man’s friend.”

“I feel so guilty all the time”

Then the lady moved into my chaplain’s area. “I feel so guilty all the time.” She wept.

“Guilty? For what?” Caregiver guilt is not uncommon.

Once, when she mentioned to a doctor she felt guilty for not doing enough, he said, “If you want to feel guilty about something, feel guilty for doing all this to your mother.” I wouldn’t have said it that way. But basically I suggested she start doing less.

I recommended that if she wanted her mother to have a peaceful death at home she not call the rescue squad, she not use antibiotics for aspiration pneumonia, and maybe stop using the bulb syringe. Oh…and she stop feeling guilty.

I actually have little hope she will stop feeling guilty as it has been her constant companion since childhood she told me. But I did tell her, “You can never make a wrong decision. You do the best you can with the information you have at the time. That is all we can ask of anyone. Maybe later will you look back and see how things could have been done differently. But in the moment you just do the best you can.”

 

Photo by Anwaar Ali on Unsplash

Choosing Death Over a Paralyzed Life

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It is so easy to theorize about what you would do. What if you were on life support with the prospect of spending the rest of a long life as a quadriplegic on a ventilator.  Would you say “good bye” to your wife who is carrying your unborn child and ask them to turn off the vent?

That is exactly what Tim Bowers did. Click here for the telling of the story.

Just over a week ago Bowers was hunting and fell sixteen feet to the ground from a deer stand. He fractured three vertebrae and damaged his spinal cord. The medical team advised his family that he would be paralyzed from the shoulders down and probably dependent on machines to breathe for him for the rest of his life. The family wanted to see if the patient could participate in the decision-making process.

“Do you want this?”

When he woke up from the sedatives that had kept him unconscious he could not speak but could answer yes-and-no questions. “Do you want this?” they asked, meaning “Do you want to be kept alive on this machine?” He shook his head “No.” They removed him from the ventilator and he died a day after the accident.

Well. Well?

This is what we in the medical community have been advocating. NOT that people be allowed to die. What we want is for patients to be involved in the decision-making that might end his or her life. They woke Bowers up and asked and he essentially said, “Let me die.”

As soon as I read this story I thought, “I know many paralyzed people on vents who might say he made the wrong decision.” Think Stephen Hawking.  Sure enough I found one blogger who is paralyzed who took issue with how this case was handled.

Perhaps the decision came too soon after the injury. Law professor Thaddeus Pope wonders whether Bowers had “sufficient decision making capacity at the time he made the decision?” In states where physician assisted suicide is legal there is a waiting period from the first request for life-ending medication to a second and final request. Pope asks whether or not Bowers was fully informed about the “options and possibilities of life as a paralyzed individual.”

Give a little time

I tend to agree. Give a little time. If the patient persists in his request to be taken off the machine, by all means, comply.

Years ago I was called to the beside of a heavily sedated man on a ventilator after a heart attack. His wife explained that he had been on a vent before with his heart condition and wrote a living will so he would never be on a breathing machine again. I told the ICU nurse about my conversation and she said, “It is too soon to think about that.”

Well, he was able to get off the vent and out of ICU. I visited him a few days later. He was walking around his hospital room gathering things as he prepared for a transfer to another hospital to have a defibrillator implanted in his chest. I asked him, “How do you feel about being on a ventilator again?”

He said, “I am so glad they did?”

There you go.

A Peaceful Death . . . Without CPR

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Who hasn’t heard it yet? The 911 dispatcher in Bakersfield, California begging the retirement home employee to find someone to begin CPR on 87-year-old Lorraine Bayless who had collapsed in the dining room. Apparently the policy at Glenwood Gardens independent living facility is to call the rescue squad and let them care for a stricken resident. Glenwood is not a medical facility but an apartment building with extra services for the elderly. The employee on the phone with the dispatcher very calmly said repeatedly “No, we don’t have anyone here who can begin CPR.”

Much of the commentary I have heard this week condemned the employee and the policy as unethical and uncaring. I am not surprised given the false information out there that CPR saves most of those who suffer a cardiac arrest.

May I offer a few things to consider.

1) CPR is rarely successful. Only 15% of those who have resuscitation attempts in the hospital survive to be discharged. Patients who do not live independently, who have more than one or two medical problems, or have a terminal disease survive in the 0-2% range. In one study of out-of-hospital cardiac arrest only 9.4 percent of those in their 80s and 4.4 percent of those 90 and older survive.

I don’t know what diagnoses this lady had but at 87 many people have several health issues which make them unlikely to survive a CPR attempt.

2) CPR itself has risks of broken ribs and punctured lungs as well as the risk of brain damage. Half of “successfully” resuscitated patients have brain damage ranging from mild memory loss to ending up in a vegetative state. I know of at least one case where a medical facility was sued for “wrongful life” because they “successfully” resuscitated a patient against the patient and family wishes. Evidently they felt the burden of living after resuscitation was much worse than death.

3) Most 87-year-olds wish for a peaceful, quick death like Ms. Bayless had. I say this having spent years as a nursing home, hospice, and hospital chaplain and caring for my parents (along with my brother and sister) as our elders made the journey from independent living, through assisted living, to a nursing home, and finally dying under hospice care. These old, old people’s greatest fear is to become demented, incontinent, wheelchair-bound, and having to live out their days dependent on others. Ms. Bayless was still in independent living. She never had to make that final decline most of us will make.

Mrs. Bayless’s family released a statement after the media frenzy. They wrote:

“It was our beloved mother and grandmother’s wish to die naturally and without any kind of life-prolonging intervention. . . . We understand that the 911 tape of this event has caused concern, but our family knows that mom had full knowledge of the limitations of Glenwood Gardens, and is at peace. We also have no desire, nor is it the nature of our family, to seek legal recourse or try to profit from what is a lesson we can all learn from.”

Sounds like those with most to lose in this situation are quite accepting of the outcome.

CBS radio commentator, Dave Ross, observed that neither the employee nor a resident who also called 911 had any panic in their voice. He said:

“In fact at no time do you hear anyone crying for help or panicking—probably because they all know the policy. Not just the policy at Glenwood, but the policy that applies to us all—which states that at some point—life ends. If you’re lucky, it doesn’t end until you’re well into your 80’s—but it ends. We like to think we can change that by declaring an emergency and rushing to the rescue.

“In fact, one California legislator says she plans to introduce a bill so this never happens again. Unfortunately, I think outlawing natural death may be more than even the state of California can enforce.”

Hank Dunn

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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