Compassionate, informed advice about healthcare decision making

Posts Tagged ‘medical treatment decisions’

When Are We Dying?

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Boulder, Colorado

I am here visiting my mother who is closer to the end of life with Alzheimer’s. We moved her here from Tampa a year ago so my sister could be an “in-town” caregiver. My brother and I travel to Colorado every few months to see mom and support my sister, he from Florida and me from Virginia.

Thinking that we all are “dying” is not so helpful

I say “closer” which is not such a helpful term as we all are closer to our dying than we were. So we are all “dying.” Every one of us will die sooner or later. But thinking of us all as “dying” may not be helpful in making treatment decisions.

We make different medical choices for the young and healthy than we do for the old and infirm. When we are young and otherwise healthy, aggressive medical treatment to cure a cancer caught in its early stages seems quite appropriate. Wait a minute! I thought I said we are all dying so why would we treat a dying person to cure cancer. See . . . thinking that we all are “dying” is not so helpful in making treatment decisions.

So, mom, age 92, has been going through the stages of dementia for at least seven years. We have taken over her finances, her medical treatment decisions, even the move to Boulder was all ours. We didn’t even pretend that she had a say in the matter.

When do we say she is dying? I have observed in my years as a healthcare chaplain that we reserve the word “dying” for the last hours or days of a person’s life. Sometimes we even say a patient is “actively dying” which is a strange oxymoron. Often this type patient is nonresponsive, not eating nor drinking . . . doing nothing . . . and we say actively dying. What’s that about?

“The last phase of life,” can last from hours to years.

I now characterize my mother’s condition and those like her as being in “the last phase of life.” This phase can last from hours to years. Like my father before her, my mom indeed has been in this phase for years. Being in the “last phase” informs our decisions about her care. Our goal for her at this stage of life, following her instructions, is to prepare for a comfortable and dignified death.

My friend Dr. Joanne Lynn instructs her physician colleagues to ask themselves, “If I heard that this patient had died in the next six months, would I say to myself ‘I am not surprised’?” If someone’s death would not be surprising then they are in the “last phase.” In addition, they probably would qualify for hospice.

Decisions are easier in the last phase when we are looking to prepare for a comfortable and dignified death. Hospitalization, CPR, surgery, a feeding tube . . . all highly unlikely to be compatible with a comfort goal.

Medical decisions may be easier but the emotional and spiritual work continues. It has been hard to watch our once vital and fun-loving mother wither into a shell of her former self. We have been grieving. But we are very much at ease with the goal of comfort care in this last phase of life.

“You Can’t Make a Wrong Decision”

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“I made a mistake. Made the wrong decision,” the wife of the recently deceased man said.

Last Friday I was speaking at the Centra Hospital in Lynchburg, Virginia. In the room were fifty or so clergy types along with physicians, nurses, social workers and just plain folks. I divided my presentation with the first half devoted to helping patients and families make end-of-life decisions. Later I turned to the emotional and spiritual issues at the end of life.

A lady raised her hand and told this story. She has a friend whose husband had been in a nursing home and on a feeding tube. He was not considered to have the capacity to make his own medical decisions so all the medical treatment decisions rested on his wife. On more than one occasion the patient pulled out the feeding tube.

This friend suggested to the wife that perhaps the patient was saying he did not want the feeding tube. The wife always responded, “He doesn’t know what he is doing.” The tube was always reinserted and the feedings were resumed.

“I should have left the tube out and let him die sooner.”

About six months after the patient died the friend was visiting with the wife. The wife said, “I made a mistake. Made a wrong decision. I should have left the tube out and let him die sooner.”

At times, I have heard other family caregivers express similar regrets about decisions that were made. “We shouldn’t have sent mom back to the I.C.U.” “I wish we had never started the feeding tube.” “We kept the chemo going way too long.”

You can never make the wrong decision

When I hear remorse like this I always tell people, “You can never make the wrong decision. You make the best decision you can with the information you have at the time.” I have never, in my 28 years of being close to decision-makers, thought someone made a decision with the intention of harming a patient. People always want the best for the patient. It is only in looking back that they say a decision was a mistake.

I even say “you can’t make a wrong decision” to people who are in the throes of a decision-making process. I hope to ease the burden they are placing on themselves. These choices can be hard enough. I want to assure these burdened families they can’t make a wrong decision. You just do the best you can with the information you have at the time.

 

Photo by Nik Shuliahin on Unsplash

A Metaphor for End-of-life decisions

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How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years. I have written endlessly on the subject. I have lectured up to eight hours in a single day on topic.

One thing for certain . . . the fact that patients and families often struggle with decisions about medical treatment at the end of life will not go away.

A story became a metaphor.

“I’ve got to make a life-and-death-decision about my mother by Thursday,” the teary-eyed woman said to me on a Monday morning. She volunteered once a week at the nursing home where I was chaplain. She wanted me to help her.

We found a place of quiet. “Tell me what is going on?”

“My mother is in a hospital in Virginia Beach and is on dialysis. My brothers and sisters and I have to decide whether or not to withdraw the treatment and let or die.”

“Has you mother been sick for a while or did she all of a sudden go into kidney failure?”

“Oh, her health has been going down for some time. She has had two strokes in the last two years and now her kidneys are shutting down.”

“What do the docs say? Is the treatment doing any good?”

“They don’t think it is doing any good at all.”

“Did you mother ever give any indication what she would have wanted in a situation like this?”

“Mom said she never wanted to be on dialysis.”

I am thinking, “What’s wrong with this picture here?” In my mind, the obvious choice was to remove the patient from dialysis. I told the woman as much.

I said, “This is not a hard decision. Of course, you take your mom off dialysis for all the reasons you just gave me. This is the end of a long decline in her health. The docs say the treatment is not doing any good. And your mother said she never wanted to be on dialysis. Of course you take her off.”

I wanted to know more. “What is going on here that makes this decision so difficult?”

At that point she began to cry, “I think I am feeling guilty because I haven’t visited mom enough.”

When she said “guilty” I knew she was moving into my area.  . . . I’m a Baptist. I know we think we have more guilt than other persuasions. Of course, there are the famous Catholic and Jewish forms of guilt. Fair or not, religions often encourage guilt feelings. Although she did not say her religious beliefs led her to feel guilty, I felt more at home as a chaplain in the face of such deep emotion.

The metaphor the story became is this: For patients and families end-of-life decisions have little to do with medicine, ethics, law, religion, or morality. For them these decisions are primarily emotional and spiritual in their nature.

It is not that medicine, ethics, law, religion, and morality have no part in medical treatment decisions. They are a huge part, especially at the end of life. As we enter our final days or months often the resolving of these issues points toward withholding or withdrawing certain treatments. Then the big question for the patient or family is “can I let go?”

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