Compassionate, informed advice about healthcare decision making

Posts Tagged ‘advance care planning’

“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.

Not much has changed in 40 years — My radio interview

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Are people more willing to have a conversation about end-of-life planning today than they were in the 1980s? That was Jeanne McCusker’s opening question as she interviewed me for her weekly program, “A Graceful Life.” What was I to say?

Jean McCusker, host of “A Graceful Life”

I had to admit, “Not much has changed.”

Why? Why, in almost 40 years, has not much changed about end-of-life conversations?

Dying is very personal. You only die once. Although you may get some experience making healthcare decisions for others, like your parents, that is still limited experience. Every end of life is unique. We may have made great strides toward facilitating more peaceful deaths, but each person still faces their death anew.

Hospice and advance directives have not guaranteed peaceful deaths

I do think healthcare professionals and healthcare systems are better today. Take hospice, for example. Medicare started the hospice benefit in 1982. Since then, hospices have grown exponentially. Now, almost everyone knows stories of good hospice deaths. About half of the people who die on Medicare receive hospice care.

Sadly, if you dig down into those numbers, over one-quarter of those on hospice were there less than a week. In other words, they waited until the “last minute” to receive this vital service. Hospice professionals know it is hard to provide the best comfort-focused end-of-life care in less than a week.

Another change in the last 40 years has been the increased use of advance directive documents like living wills and durable powers of attorney for healthcare. About half the adult population now has such papers.

Again, all this paper has not improved how well we die. An important article in JAMA last fall questioned whether the emphasis on these documents has led to improvements in end-of-life care. Healthcare professionals might want to listen to a recent GeriPal podcast on this very topic. Just having a piece of paper does not guarantee a peaceful death.

I came to the end of the interview repeating what I often say, “End-of-life decisions, for patients and families, are mainly emotional and spiritual. The big question is, ‘Can I let go?’” THAT truth has not changed. Letting go and letting be can still be difficult.

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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.

 

A Tale of Two Docs

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There are the best of doctors for end-of-life care and the worst of doctors for end-of-life care.

In my last blog I told the story of two physicians. Dr. Rogers took care of my mother in the last months of her life. He is among the best of doctors for this phase of life. The other doc, I’ll call Dr. Smith, was among the not-so-good ones. I will repeat my short story:

The other doc was among the not-so-good ones

. . . I had a patient once at the nursing home whose dementia had advanced to the point where he did not know his wife, wandered the halls, and urinated in the corners. He had a long and proud career in the FBI and was now reduced to living most people’s worst nightmare. I suggested to his wife that she speak with the physician about a “No CPR” order. She reported back to me that when she requested the order, the doctor hesitated and referred to me as the “chaplain of death.”

I was shocked. Here I had done the hard work for him in addressing the emotional and spiritual issues and sent a caregiver to him requesting what, in my view, was a most appropriate order. If this patient could see himself and have a right mind, I was certain, and so was his wife, that he would welcome death. His heart stopping was the only way to be free from the dementia ravaging his mind. . . .

I am sure Dr. Smith is a fine doctor in many ways. He probably took good care of this nursing home patient. He just seemed uneasy making the shift to “comfort care only” as this patient moved toward the end of his life.

What makes the difference between the best docs and the ones who have room for improvement?

First, Dr. Rogers was more patient-centered. He tried to ascertain what my mother would have wanted and how she felt about her current condition. “How did your mother feel about her dementia?” he opened the conversation.

I wasn’t in the room with Dr. Smith and the wife of the advanced Alzheimer’s patient at the nursing home, but it appears he was more interested in treatment orders. If he had just stopped to inquire about what the patient might have wanted, he could have spared the wife from feeling like she was asking for a death sentence.

Secondly, Dr. Rogers offered his professional opinion based his experience and a “best practices” approach at the end of life. Once he had us establish what Mom’s feelings about advanced dementia were, he told us what was needed to reach the goals of mom’s care.

The wife of the Alzheimer’s patient needed the advice of a doctor who could tell her about the limited effectiveness of CPR and the appropriateness of a “No CPR” order. She got that information from me and the doc belittled my contribution.

Lastly, Dr. Rogers saw death as the inevitable end of the course of treatment following my mom’s fractured hip. He could not stop her death although he could have recommended a treatment plan that could have prolonged her dying. She could have been sent to the hospital for hip surgery, IVs, and perhaps a feeding tube. She could have been with us for a longer amount of time. But she was going to die sooner or later as a result of this fractured hip and the advanced dementia.

Dr. Smith seemed to think death could be stopped or at least postponed. If he read the medical literature he should have known that CPR offers no hope of saving the life of this patient. Good medical care has a lot to offer patients at the end of their lives. Dr. Smith could have sought to keep the patient comfortable rather than trying to stop death with resuscitation attempts.

The Dr. Smith’s of this world are not bad people . . . maybe not even bad doctors. They just need to see death as part of life and that the physician has a role in making a passing as comfortable as can be.

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