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Dear Doctors and those who oppose end-of-life care planning within the Medicare system:

Monday, 30 Jan 2012 10:37

About Dr. Monica Williams-Murphy (120 Posts)

Dr. Monica Williams-Murphy is a Board Certified Emergency Medicine Physician, who practices in one of the largest emergency departments in the United States at Huntsville Hospital. Through her writing and speaking, she is devoted to transforming the end of life into a time of peace, closure and healing. Media Page


Recently, I had the privilege of caring for a dying patient and her daughter who was suffering and afraid because no doctor had given her guidance on what to expect.

Allow me to share this patient story with you:

“Dr. Murphy, you have an 85 year-old female and her daughter in room 12. The patient was just discharged from the hospital back to the nursing home. The family had decided to sign Do Not Resuscitate orders and to start hospice tomorrow, but the nursing home would not take her because the patient was wearing a full oxygen mask… apparently that level of respiratory management is against their policy. So, the nursing home made the ambulance bring this lady back to the hospital.”

“Huh?” I ask, hearing everything the nurse said but not being clear about what I was hearing.

“Yep, you heard it right.” She said. “And the daughter’s very upset.”

“I’ll bet she is…” I said. “Tell her I will be right in, please.”

Shortly, I made it into room 12. I pulled back the curtain to see a middle aged lady sitting in a chair to the left of the stretcher and she was crying. On the stretcher was my 85 year-old patient and she was clearly dying.

I didn’t know who to start with, but my dying patient looked more comfortable than her distraught daughter, so I started with the daughter.

“Hi, I’m Doctor Murphy, I am so sorry that all of this has happened. I know that you must be frustrated…” I said sitting down in the chair next to her and offering her my hand.

“That’s an understatement,” she said wiping her face with a tissue, “nice to meet you, doctor.”

“What’s going on here?” I asked as openly as possible, willing to talk about any issues she felt most pressing.

“Well, where would you want me to start?” She asked.

“Anywhere you’d like,” I responded.

Then she started talking. It was a complicated story but was unfortunately, all too common for end-of-life care nowadays.  Her mother, the patient, had advanced dementia and multiple other medical problems including chronic kidney failure and multiple recent episodes of rectal bleeding requiring blood transfusions. She had also recently had a feeding tube placed and immediately afterward, developed an aspiration pneumonia (a pneumonia from inhaling one’s own secretions or vomit, a condition NOT prevented by feeding tubes).

The way she put it, the doctors all moved along with what I like to call the “full-court press” without question, despite her mother’s debilitated and weakened state. It was she and her brother, who finally had to say “Whoa! Momma’s had enough!”

She then told me about asking the doctors if they could just take her back to the nursing home and make her comfortable. To listen to her side of the story, it sounded as though only one of the many doctors on her mother’s case was supportive. This doctor helped her arrange for her mother to go back to the nursing home and wrote an order for hospice…but this was all he did to prepare the patient and the family for this path.

He wrote to continue all kinds of medications such as anti-cholesterol medications, something for her thyroid, a medicine to treat dementia, and 4 blood pressure pills. One look at this patient and it should have been clear to the doctor that she would be dead in 1-2 days (she was actively dying), and no cholesterol or thyroid pill would change that fact.

He didn’t explain hospice. This daughter had no idea of what hospice would or wouldn’t do and thought she would have to pay out of pocket for the care, and thus was afraid that she would not have the money to give her mother the care she needed. (A false notion, as hospice is covered under Medicare.)

Finally, the doctor didn’t tell her what to expect as her mother began to die. Didn’t go over the changes in breathing, or skin color, or any of these things that families need to know.

I quickly excused myself and came back with one of my books, It’s OK to Die. I gave it to her and we discussed the stages of dying as I examined her mother who was lying in the fetal position, minimally conscious, breathing rapidly and holding a handful of the blanket which covered her small body. I changed her oxygen face mask to a nasal cannula with prongs that enter the nose (something the nursing home COULD manage). Her mother’s oxygen level rapidly dipped with the change in medical devices, so I told the daughter that I would call hospice out to get started with them immediately instead of waiting till the morning (because I realized that morning might be too late).  As I listened to my patient’s lungs filled with the sounds of a finalizing pneumonia, I looked back over to her daughter still sitting in the bed-side chair. She was now crying harder than when I had first entered the room.

“Oh no! Have I upset you ?” I asked as I moved back to her side.

“No,” she spoke chokingly,” It’s just that you are the first doctor who has given me any guidance or any peace”

 

***

This scenario should have never played out this way for this patient and family. There are 2  parties at fault as I see it:

 1-The doctors:  I know that we, as doctors, in general, are terrible at talking about death and dying, but we have to do better than this! This scenario is unacceptable. We need to stop looking only at the organ system that we specialize in and start looking at the whole person, the big picture.  Counsel from that larger perspective. Think about what you would want for yourself or your family. Give your patients the choice of comfort-focused care rather than cure-focused care. Explain the difference. Write orders that reflect this difference.

 2-Those who have previously been successful in blocking Medicare sanctioned end-of-life care planning sessions between doctors and their patients:  Listen, we doctors are not trying to “off” our patients, nor will talking about and planning for the end of life, plant such a seed in our heads. I think it is ridiculous that Medicare pays doctors for “tobacco cessation” and “obesity” counseling, but not for “end-of-life” care planning, because here is the bottom line: Not all of us smoke or are fat, but all of us are going to die!  While it is true that smoking and obesity will make us all die sooner, it is a false notion…no, a lie, that talking about end-of-life care with your doctor will make you die sooner!  Instead, talking with your doctor about end-of-life care issues increases the chances that you will die peacefully, according to your decisions, and with the dignity you deserve; and you won’t be found dying in the ER in the middle of the night with your family all crying because they don’t know what is going on—like in the story above.

 

Respectfully,

Monica Williams-Murphy, MD

www.oktodie.com

(Elements of the patient story have been altered to protect the privacy of the patient and family. Publication date has no relevance to the actual date of the patient encounter. As always, we express gratitude for the patients and families who teach us the lessons we write about. )

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