Compassionate, informed advice about healthcare decision making

Posts Tagged ‘end-of-life care’

How Come so Much Aggressive End-of-Life Care?

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The man was riddled with cancer. The paramedics continued CPR as they wheeled him out of his nursing home room. I drove his wife to the emergency room. This is what the family wanted, although I am not sure the patient would have chosen it. When the doc came to the waiting room to tell the family he died, they congratulated themselves on “trying everything.”

Sadly, aggressive care in the last days of life is all too common. Perhaps, my experience with this patient was an extreme example. Aggressive care can include an ICU stay, surgery, chemotherapy or radiotherapy. New research shows that about 60% of elderly Americans with metastatic cancer receive some sort of aggressive care in the last 30 days of life.

60% of elderly, advanced cancer patients receive aggressive life-saving attempts in the last month of life

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This research was recently published in JAMA Network Open and looked at the last 30 days in the lives of 146,329 people who were over 65 and had a diagnosis of metastatic cancer, in other words, very sick, frail elderly folks with an average age of 78.2 years.

I was put onto this research by a great article from Paula Span in the New York Times. She writes a regular piece called, “The New Old Age,” and this was one in her series. What is not clear from the research is “Why?” Why are so many, obviously dying old folks being dragged through more treatments which are normally reserved for those seeking cure?

Some may want this treatment, but I doubt it

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It is true that some of these aggressive treatments can be considered palliative, for example, radiation to reduce the size of a tumor and hopefully reduce pain. It is also true, that some of this aggressive treatment is actually what the patient wanted. Perhaps, they were made fully aware of their grave condition but chose treatment that had little chance of helping them. Both of these possibilities are probably in a small minority of this aggressive care.

Spirituality raises its head again

The JAMA study concluded, “The reasons for aggressive end-of-life care are multifactorial, including family involvement, religion and spirituality, patient preferences, patient-clinician communication, and health care delivery systems.” I would add, the default mode in our healthcare system is to do stuff, when faced with a problem. That “stuff” is usually doing more of the same rather than shifting to comfort care only.

My chaplain antennae always perk up when I see “religion and spirituality” mentioned in any medical journal article. I am back to my oft-repeated premise — for patients and families, end-of-life decisions are primarily emotional and spiritual. People need to learn when it is time to let go and just let things be.

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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.

“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

“You can flunk out of hospice.”

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I am the last person they want to meet. Actually, they would rather not meet me any time. Hospice chaplain.

I remember walking into a nursing home room to meet a new hospice patient. He was in his 60s and had a brain tumor. I gave him a friendly smile and said, “I’m Hank, the chaplain from hospice.”

With a terrified look he gasped, “Oh God. No!”

I sat down and asked, “What do you mean by that?”

“I don’t want to die.” A very honest and understandable answer.

He was so disturbed by my presence I decided to spend this first visit just getting acquainted and, perhaps, lower his anxiety a little. I told him just because you are in hospice you don’t have to die. I said, “You can flunk out of hospice.” It doesn’t happen often but occasionally people actually improve and no longer have a life expectancy of six months or less, which is the prognosis needed to qualify for hospice care.

It is very normal to fear death

Sadly, “I don’t want to die,” were among the last words I heard him say. I made several more visits to see him but the tumor creeping through his brain took away his ability to speak after that initial conversation. I so wanted to explore what was behind his fear of death. It is very normal to fear death but each patient has their own unique spin on it.

There are many obstacles hindering people from getting into hospice care but I think getting over our normal resistance to accepting a terminal diagnosis is a major hurdle. Here is how the logic goes … “Hospice means I am dying. … I don’t want to die. … Therefore, I won’t go into hospice and not die.” Truth is most people die outside of hospice care anyway so staying away from hospice does not keep one alive.

They are going to die with or without hospice

I was inspired to write about admission into hospice because a recent issue of The Journal of the American Medical Association (JAMA) has a “Patient Page” on the topic. JAMA is mostly for physicians and other healthcare professionals but they offer “patient pages” as a resource for lay persons. You can download a one page summary about hospice free from their website.

I advise medical personnel outside of hospice to emphasize the positive aspects of hospice as they counsel patients about end-of-life care. Hospice can help people stay in their own home and provide help for the caregivers. Medical equipment and many other expenses are covered under hospice. You have pain control experts available to offer comfort. Emotional and spiritual concerns are addressed with social workers and chaplains.

Sure. The patient is seriously ill and will probably die in the near future. But they are going to do that with or without hospice.

Illustration by Maria Fabrizio

“How did your mom feel about her dementia?”

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I have just spent the last days at my mom’s bedside, in meetings with physicians, having discussions with hospice nurses, and in dialog with my brother and sister. Mom has been on a downhill slide for seven or eight years . . . probably Alzheimer’s.

“I don’t like what is happening to me.”

Her’s was a very normal course of the disease. At first she lost things. She asked the same question every five minutes. She made scores of contributions to bogus “charity” organizations—something she had never done before. She voluntarily, although reluctantly, gave up driving. As these incidents started to repeat themselves, more than once, mom said, “I don’t like what is happening to me.”

Then she had to stop volunteering at the Moffitt Cancer Center . . . a job she loved for 22 years. There were trips to the hospital. During recovery from one such trip she said, “I think it is time to move into the assisted living.” My siblings and I jumped all over that and made the move in a few days.

She got her strength back and took to walking again. Most of the time it was quite harmless. But she did end up at nearby shopping mall once. Worried for her safety we agreed mom needed an alarm device attached to her ankle to keep her from wondering out of the building. If she approached the door an alarm would sound. Very embarrassing for her. She told the assisted living staff after several of the attempted escapes, “I wish I had a gun. I would kill myself.”

Of course, psych evaluations followed each of these outbursts and upon examination mom could not even remember saying such a thing or the embarrassing alarm that led to her despair. She got more depressed. Drank more wine. Lost interest in activities.

After she fell and broke her pelvis in the spring she entered hospice care.

So we moved her to be closer to my sister in Boulder, Colorado. We found a great dementia care center where she has lived the last fifteen months. The wanderings ceased to be a problem partly because of the layout of the building and partly because her mobility became so limited. The ruthless disease led to a general decline in her health. After she fell and broke her pelvis in the spring she entered hospice care.

So typical, in my experience, she actually improved after hospice got involved. The dementia moved forward but there was some upturn in her general health. Then it happened as I had expected. She fell and broke her hip. We refused a trip to the emergency room. They brought in a portable x-ray and confirmed the diagnosis. What to do next?

Thousands of elderly folks fall, break a hip, have hip surgery, go through rehab, and walk again. My sister found a story on the internet about a 105-year-old woman who successfully went through this course of treatment and fully recovered. Mom was only 92.

But mom did not have the mental capacity to rehab even if she could survive surgery. Oh . . . and she wasn’t walking unassisted BEFORE the fall. Why the hospital, the surgery, possible infection? For what end? Half of advance dementia patients who receive such surgery are dead in six months or less. My years as a nursing home chaplain taught me anecdotally that a hip fracture was the beginning of the end for most nursing home residents. My suspicions have since been confirmed with the research.

“How did your mother feel about her dementia?”

So my sister and I sat with a very competent, no nonsense, physician, Dr. Rogers, to plan out the course of treatment four days after the fracture. He started the conversation with a question. “How did your mother feel about her dementia?” My sister told me later she did not get the point of the question. I was thinking, “This guy is good.” He wanted to know mom’s opinion of her condition before the fall. We told him about “I don’t like what is happening to me,” and “I wish I could kill myself.”

He said, “Okay. Here is what we are going to do.” He looked at the very long med list and said, “We are going to stop all these medications except the morphine and add a drug for anxiety. We will offer her fluids but not force anything on her. Comfort is our goal.” He took mom’s desire to be free from a life with a mind that had been lost as an advance directive for comfort care only. We had no wish to hasten death or cause it. We were just letting things be.

Why would we think the patient would want to be saved from death?

If a patient is not happy with their life before a crisis, why would we think they would want to be saved from death? Death will happen to all of us. And when we are burdened with years of disability, disease, and dementia, why oh why would we want to put off the death we welcome? I can’t tell you the number of patients, in the same situation as my mother, who are rushed to the hospital and their lives are saved for months or years of ever worsening conditions.

The doctor hesitated and referred to me as the “chaplain of death.”

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 am 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.

God bless the Dr. Rogerses in this world who start with trying to establish how the patient feels about their condition. If the patient would see death as a welcome release then the treatment plan that allows a natural, timely death to occur would only make sense.

Mom died peacefully eleven days after the hip fracture.

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