Compassionate, informed advice about healthcare decision making

Posts Tagged ‘dying’

“How effective is chemotherapy?” — That is the Question

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Would you spend $100,000 on a cancer treatment with many painful side effects that might help you survive 6.24 months as opposed to 5.91? That is 10 days longer in greater pain and suffering?

What if the doctor told you just that “this treatment will help you survive longer”? This is a true statement even though you might only survive 5.6% longer. That IS longer.

I have just discovered two great videos with Dr. Michael Greger discussing this very topic. Each video is less than seven minutes and worth every minute of your time. One is called “How Effective is Chemotherapy?” and the other is “How Much Does Chemotherapy Improve Survival?”

Let me be clear. I have no idea what I would do if I had a cancer diagnosis. I have close friends and family members who had advanced cancers and have been treated very successfully and are living active lives years after their treatments.

On the other hand, I have had patients, and, again, close friends and family members who received brutal chemotherapies and died. Many of those seemed to have received no benefit from their treatments and suffered great burdens. Many patients go bankrupt in order to pay for treatments.

Dr. Greger, in the first video says, “A large proportion of cancer patients reported their willingness to declare bankruptcy or sell their homes to pay for treatment. I mean, look, aren’t the high prices justified if new and innovative treatments offer significant benefits to patients? But you may be shocked to find out that many FDA-approved cancer drugs might lack clinical benefit.”

In his second video he referred to a study reported in the Journal of the National Cancer Institute. “In fact, the most expensive drug they looked at, the one costing $169,836 a year, did not improve overall survival at all, and actually worsened quality of life. That’s $169,000 just to make you feel worse with no benefit. Why pay a penny for a treatment that doesn’t actually help?”

I am NOT giving medical advice here. I am encouraging all of us to ask questions of our physicians. If a recommended therapy is said to improve survival, ask, “How much improvement?” Is it just 10 days over six months while suffering uncomfortable side effects? Ask about cost. Would I be willing to spend my financial legacy for those 10 days?

This all reminds me of the importance of our own emotional and spiritual preparation for dying. When “our time” comes we will be ready to die… or be healed. Either way, we’re okay.

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Cover Photo by Marcelo Leal on Unsplash

Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

My Life At 100

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I made it to one hundred! 100. The Big One-Oh-Oh.

This is my 100th blog post. It took a while. I started blogging in 2011 and made six blog posts that year. For the first nine years, I only published 51.

From my very first blog post, May 11, 2011: “How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years.… 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.”

(BTW, shout out to Kelly Brachle, of Quality of Life Publishing Co., who edits my ramblings into a coherent thought. And while I am shouting out, nothing leaves our home without the approval of my wife as she stands in for the “average reader” [when I showed her this post, she reminded me she is “above average”]. More than once, her suggestions have saved me some embarrassment.)

It’s all about the stories — family, friends, wilderness

Although I often stick to the theme of making end-of-life decisions, other topics get some attention. I share my own family’s experience with death and dying, like with my mom’s decline and death in “How did your mom feel about her dementia?” Grief is a repeated theme, like my recent post on the funeral ritual for my brother 42 years after he died.

I really try to tell stories, like the post about my friend who died with dementia. I wrote about our friendship since junior high and how we fished together in the years before his death. Occasionally, I share my adventures in the wilderness, like the one about my love of swamps.

I have been writing my whole adult life – before the days of the blog. A few of those older writings made it into the collection. I reprinted a story about riding my bicycle the length of the Outer Banks from a 1993 newsletter published by the nursing home where I was chaplain. For several years following a difficult time in my life, I sent letters (essays, really) to family and friends. In a 2014 post, I shared a piece I did in 1998 about my friend, mentor, and author, Elizabeth O’Connor.

Writing and videos for short attention spans

We have become a people with short attention spans, so I try to limit each post to about 500 words. I have even ventured into producing two-minute videos on various topics. Sometimes I’ll tell the same story in both formats. I did a blog about the lesson my father taught me about letting go in the blog “How to get to ‘It doesn’t Matter!’” I then did a YouTube video about the same story.

By the way, you can subscribe to my YouTube channel and look through my “Hank’s Deep Thoughts” playlist.

I have found that writing for others helps me think things through. I can clarify thoughts in my mind when I have to explain things in a way others can understand. So even if no one else reads these, I will keep on writing these blog posts.

Oops! I just passed 500 words. Bye!

“Giving Up, Letting Go, and Letting Be” — A Poem

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Giving Up, Letting Go, and Letting Be, By Hank Dunn

— Giving up implies a struggle…

Letting go implies a partnership…

Letting be implies, in reality, there is nothing that separates.

— Giving up says there is something to lose…

Letting go says there is something to gain…

Letting be says it doesn’t matter.

— Giving up dreads the future…

Letting go looks forward to the future…

Letting be accepts the present as the only moment I ever have.

— Giving up lives out of fear…

Letting go lives out of grace and trust…

Letting be just lives.

— Giving up is defeat at the hands of suffering…

Letting go is victory over suffering…

Letting be knows suffering is often in my own mind in the first place.

— Giving up is unwillingly yielding control to forces beyond myself…

Letting go is choosing to yield to forces beyond myself…

Letting be acknowledges that control and choices can be illusions.

— Giving up believes that God is to be feared…

Letting go trusts in God to care for me…

Letting be never asks the question.

 

This poem can be found in both Hard Choices for Loving People and Light in the Shadows.

Photo by JOHN TOWNER on Unsplash

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.

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