Compassionate, informed advice about healthcare decision making

Archive for the ‘Emotional & Spiritual Issues’ Category

Kids, Funerals, and the Civil War

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“Should I take my 13-year-old boys to the funeral?” a friend of mine asked. It was a very tragic situation. Her boys were on a soccer team where two of the teammates had already lost their fathers—one to cancer and another in an industrial accident. But this new loss was even worse. Two of the boys on the team were killed by their own father as part of a murder-suicide.

Would this haunt them for years if they got too close?

This mother was concerned about the long-term effects of the boys being exposed to such a horrific loss of life. Would taking them to the wake and funeral make them overly anxious about whether this could happen to their family? Would they have nightmares? Would this haunt them for years if they got too close?

It almost goes without saying, but I assured this mother that she knows her boys better than anyone and she will make the right decision. I repeated my oft-repeated mantra—you can never make a wrong decision. You make the best decision you can with the information you have at the time.

I did say, in general, 13-year-olds should be able to handle the emotions and thoughts that may arise by attending a funeral. Also, in general, I feel it is good for this age children to be exposed to the rituals around death and dying. As much as death is a part of movies, TV, and video games, most of our society does not see death as a normal part of life. Such unfamiliarity makes it so much harder to deal with when it strikes close to home. I went on to say that the horrific nature of these particular deaths may be cause to limit her boys’ exposure. She has to make that call.

In some ways it is actually a good sign that our society does not often see death personally. Many people do not lose their grandparents until they reach adulthood. With rising life expectancy most of those who die are very old. There are exceptions for some segments. The poor may have more health problems that bring early death and some communities experience have higher rates of violent deaths. I would not wish higher death rates on any portion of our citizenry.

How does a nation cope with the enormity of this loss of life?

There was a time when death was all too familiar. Coincidently, this family tragedy happened the same week as the PBS special “Death and the Civil War” aired. From 1861 to 1865 an estimated 750,000 Americans died in the conflict or 2.5 percent of the population. Transpose those figures to our current population and it would be like seven million people died. How does a nation cope with the enormity of this loss of life?

The PBS presentation was based on a book, This Republic of Suffering: Death and the American Civil War by Drew Gilpin Faust. Although Americans, in 1860, would have been familiar with death, the nature and scale of the suffering brought on by the Civil War were unimaginable. We know our ancestors lived close to death. Visit any old cemetery and one is struck with how many young children died. Before the Civil War people often died of a short illness, at home with their family around them. There were last words spoken, prayers, the deceased laid out in the living room, and a funeral service. These practices made up the “good deaths.” But these rituals rarely happened with wartime deaths.

Both sides expected the Civil War to be short and not that painful. The Union army drafted men to serve for only 90 days. There was no ambulance service, no provision for identifying and burying the dead, no system for notifying the next of kin. The soldiers faced a death unlike the “good deaths” they might have witnessed back home. Often killed instantly by a bullet, there was no time for last words. There was no family gathered around. If the soldier’s army had been defeated on the battlefield and fled, there were no comrades to bury them.

Wartime deaths beg for meaning. Why did all these men die? For the North, Lincoln’s Gettysburg Address summarized the meaning that these men “shall not have died in vain.” They died to preserve the union and grant freedom to all who dwell in our land. He spoke at the dedication of the first of the National Cemeteries. For the South, finding meaning was more difficult but in the years that followed, the idea of the “lost cause” helped give meaning. Both North and South spent years repatriating remains and establishing cemeteries near sites of battles or prisons.

Death is more distant, remote

And today? Most often the old in poor health are in nursing homes or other facilities and not an active part in the lives of their families. Most people die in institutions like hospitals, although hospice is helping more die at home. Death is more distant, remote. Because sickness, decline and death are often hidden we lose the opportunity for personal and spiritual growth by not contemplating death. The boys on the soccer team can benefit from learning early the harsh realities of life. Hopefully, they will appreciate the gifts of life and of their healthy families. Hide death from them and you hide one of the most profound aspects of life on earth.

Read the words of Michel  de Montaigne,  c. 1580-1595:

“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.”

Photo by Jesús Rodríguez 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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