Tag Archives: patient advocacy

A Get Well Card for Warren Buffet

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photo: jparadisi

As an oncology nurse, if I listened to the family members of an affluent, elderly patient debating at his bedside his right to receive cancer treatment, insisting he is too old, I would suspect elder abuse, and call for a social service consultation. Yet, this very scenario is occurring throughout the media in response to Warren E. Buffet’s announcement last week that he has stage I prostate cancer and will undergo eight weeks of daily radiation treatment, beginning in July.

The hullabaloo is in regards to guidelines established by the U.S. Preventive Services Task Force (USPSTF) recommending that men over age 75 not receive prostate cancer screening, aka the simple PSA blood test. 81 year-old Buffet not only received the PSA test, but when the results came back raised, he under went a prostate biopsy, which is also a no-no for a man his age per USPSTF guidelines. This is how his prostate cancer was diagnosed.  USPSTF recommendations for treating slow-growing stage I prostate cancer consist of a digital rectal exam (DRE), and PSA test every 3-6 months, with annual prostate biopsy (see link above). Mr. Buffet’s choices for cancer treatment drives at least one oncology urologist batshit. By the way, the USPSTF is the same task force that presented new mammogram guidelines in 2009, sending women’s health groups to arms.

I’m no expert on prostate cancer, hell; I don’t even have a prostate. But if I did, I would consider it my right to choose how to treat it if it were diseased, assuming I am presented with appropriate choices. There are a few things I do know: Warren Buffet is one of the good guys. An outspoken advocate of fair play, he proposed The Buffet Rule a $47 billion tax increase on the nation’s richest households, which the House voted down earlier this month. He is also one of 81 billionaires pledging to give away more than half their personal wealth to philanthropy when they die.

Do I believe Warren Buffet deserves special health care privileges because he is powerful, wealthy, and generous? No. I believe everyone has the right to their informed health care choices, and have those choices respected by their providers, families, and friends, without scrutiny. A cancer diagnosis and treatment is difficult enough without this added burden, whether the patient is unemployed, homeless, or the third richest man in the world.

A man with the power and affluence of Mr. Buffet is most likely unconcerned about the opinions of the media, and even less with mine. But for what it’s worth, Mr. Buffet, from an oncology nurse in Portland, Oregon, I wish you the best throughout your cancer treatment, and send positive thoughts for a speedy recovery.

Pain is The 5th Vital Sign, Who Has Control?

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Photograph courtesy of Adriana Paradisi, 2011

Recently, two nurses in my blogging community wrote about patients in pain. Joni Watson at Nursetopia posted a link to horrific videos of patients suffering in pain without proper medication, and J. Doe at Those Emergency Blues urges nurses to provide post-op patients with education along with that vial of pain medication at discharge.

Patients who are not in control of their own pain medication often suffer in pain. Here’s a composite story from my Pediatric Intensive Care experience:

I am taking report on a child less than 24 hours post-op open-heart surgery. The night nurse, who is fairly new, tells me that the only pain medication given on her shift was acetaminophen, although the surgeon ordered narcotics too. I say, “WHAT?” The night shift nurse explains she offered narcotics, but the patient’s mother, who was up all night at the bedside, refused them. Like I said, I am familiar with this routine. I have a script for it. I ask the night shift nurse to follow me into the patient’s room so she can learn it too.

In the room, I see a small child sitting rigidly in a hospital bed. An untouched breakfast tray rests across her lap on the bedside table. Above her, the green tracings of the monitor displays tachycardia (heart rate is high). The central venous pressure (CVP) and blood pressure are also high. Barney the Purple Dinosaur is singing about friendship on the blaring TV, and I feel a headache coming on. Mom at the bedside, looks like she hasn’t slept for weeks, and is clearly exhausted. I say “Good morning,” and introduce myself. I say, “So, your daughter’s surgery went very well. How do you think she is doing today, right now?”

The Mom tells me her daughter seems very quiet, and isn’t eating breakfast, which is unusual. I say “Hmmm,” then point out that all of the numbers on the monitor are high, and to me, it looks like her daughter might be painful. “By the way, the night shift nurse mentioned that you prefer your daughter receive only acetaminophen, and she hasn’t had any narcotics. Is there a reason you don’t want her to receive narcotics?”

I am not surprised to find out that someone in the mother’s family recently died of cancer, or another long disease process and at end of life was on a narcotic drip.

The mother equates narcotics with death, and is illogically protecting her daughter by preventing narcotic administration. The patient is too young to speak for herself. I educate the mom on the difference between post-op analgesia and end of life pain control. She allows me to give a little narcotic to her child, and soon the kid is eating breakfast and singing along with Barney. Her vital signs are normal, and the surgeon is very happy with her progress.

Now I work in an ambulatory oncology clinic, and I see another variation of this patient who is not in control of his or her own pain medication administration. Typically, this patient has rapid disease progression, and almost always tumor metastasis to the spine. They are easily identified by their need of mobility assistance, and are painful even lying in bed. They tend to talk to you with their eyes closed. They are too sick to speak for themselves.

A family member always accompanies them, and that person knows the name of all the prescribed medications, the doses, and when they were last given. They give a detailed report of the patient’s diet, stools, and urinary output. The patient is clean, and dressed in clean clothes. They are obviously loved.

I assess for the fifth vital sign: pain. Their body language prepares me for a high number, and I am not surprised when they report an 8 out of 10, or greater. I see on the home medication list that the oncologist has prescribed both long acting pain medication and a short acting one for breakthrough pain.

I ask both the patient and the caregiver when the patient last had pain medication. The caregiver answers, “Last night.” I ask why the patient didn’t have a dose in the morning before this appointment. The answer is something like, “He needs to walk more.” “He doesn’t eat enough when he takes pain meds.” “I didn’t think he needed it,” and a long list more. Apparently, this is a very common problem confronting hospice nurses, and Medscape has a very good article on the topic.

It is my experience when encountering this caregiver and pointing out that their loved one is in pain that they start to cry. They almost always have the vial of long acting pain medication in their purse or pocket. I get an order from the oncologist, and together, the caregiver and I treat our patient for pain.

I explain that the bone pain will not go away; it will worsen. Our patient will need more pain medication, not less.  Then we discuss loss and grief, and how painful they are. The caregiver sees their loved one floating away on a cloud of analgesics, and illogically thinks that withholding narcotics will keep them here longer. I can’t fix this for them. It’s going to happen. I provide a safe environment to talk about grief. I urge them to be brave and declare their love by treating pain. I arrange the appropriate support to protect the patient at home.

And I say a little prayer for all of us.

Whistle Blowers & Patient Advocates: When the Nurse Stands Alone

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oil on unstreched canvas (detail) 2009 JParadisi

A colleague and I discussed the Winkler County Whistle Blowers case and our admiration for Registered Nurses Vicki Galle and Anne Mitchell. They brought the nurse’s role of patient safety advocate into the national spotlight.

My colleague is also a force to reckon with when it comes to patient advocacy. During our conversation she grew quiet and told me once, she had advocated for a patient without the support of her peers or administration.

The event occurred early in her nursing career, before she gained the skill and knowledge, which now empower her ability to act confidently as an advocate. In the end, she followed orders, even though they conflicted with her ethics. Decades later, she still regrets her choice.

I listened to her story, and tried to imagine her as a young nurse, uncertain and faced with a situation nursing school had not prepared her for. I imagined her alone and isolated, the only one in a nursing unit who felt, or more likely, spoke out loud the feeling that what was happening might not be best for the patient.

The Winkler County Whistle Blower case demonstrates that this kind of moral isolation still happens to nurses. However, it also demonstrates that nurses have developed resources for themselves and learned how to access them. These days, many hospitals have ethics committees and safety committees for reporting unsafe systems and behavior. Many hospitals have policies protecting nurses who refuse to administer treatments that conflict with their moral beliefs. Winkler County Memorial hospital fired Anne Mitchell and Vicki Galle when they used the hospital’s safety chain of command to protect patients, but the hospital and the doctor bringing charges against them found out this kind of punitive behavior is no longer tolerated by the court system or a majority of health care professionals. The Texas Nurses Association and the American Nurses Association said, “We are watching,” as did the Texas Medical Board. I’ve heard the conversations of doctors who ask why Dr. Arafile’s colleagues didn’t report his behavior. Why was the responsibility left to nurses? If any of these resources were available for my nurse colleague when she faced her dilemma decades ago, I would be surprised.

My heart breaks for that young nurse, facing an ethical dilemma alone and unsupported, with nowhere to turn. I told my colleague I hope she has forgiven that young, inexperienced, and frightened version of herself, with  her older, more experienced self’s compassion. I suggested that what she learned from that episode long ago has forged her into the warrior nurse advocate she is today, benefiting hundreds of patients during her long career as their advocate.

Blog Post Supports Anne Mitchell, RN

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     An opinion on the Anne Mitchell case is posted by David Gorski on Science Based Medicine. Anne Mitchell, RN stands trial for reporting a doctor for behavior that she asserts is medically inappropriate. She was fired from her job at a Winkler County, Texas hospital for filing the anonymous report. If convicted, Mitchell faces up to 10 years of prison, and a felony record. The Trial has begun.

Related posts on this blog: 

  Texas Nurses Accused in Whistler Blower Case

                      Update on Vicki Galle and Anne Mitchell Whistle Blowing Case 

Just Because You’re Big Enough to Hold Still (patients, pain & procedures)

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    I still experience culture shock, since my transfer from pediatric intensive care to outpatient adult oncology nursing , over the difference in sedation use during procedures for pediatric and adult patients. What allowed me to tolerate 15 years of pediatric intensive care nursing (yes, it is as emotionally challenging as you think it is) was the routine sedation of the child going through procedures. 

   Adult patients know that when their healthcare provider says, “You may experience some discomfort during the procedure”, what we mean is  “This is gonna hurt.” Remember, this is an industry that accepts anal leakage as a reasonable side effect of some medications.  Adult patients are expected to lie still.

   Like during a bone marrow aspiration. My patient cried before the oncologist arrived, but the doctor didn’t see that. She cried during the injection of the local anesthetic too. Her family looked concerned, but no one spoke up.  Nurses, because of our extended contact with patients, are the emotional thermometer in the room. It is my practice to request from the physician a small dose of sublingual lorazepam to offer the patient before such a procedure, just to take the edge off, but it’s rarely ordered, unless the patient demonstrates high anxiety levels in front of the physician, which indicates the patient might not hold still. The procedure lasted only minutes (the oncologist was skilled), but I winced to see my patient hurt. This patient made it through bravely. The physical pain was quick, then over, but the pain of the procedure was potentiated by the fear of a blood cancer diagnosis. Lorazepam does not control pain. It does ease anxiety.  She was big enough to hold still.

   Perhaps I’m sensitized to this issue because I have been a patient needing a biopsy for a cancer diagnosis too. I remember the white noise of anxiety drowning out my ability to hear all of the information presented to me during the early weeks that my treatment plan unfolded.  The surgeon, who was very good, wanted to do a biopsy of my lump in his office. It’s done all the time. I wanted the lump removed, under conscious sedation. That required an OR, and an anesthesiologist, the surgeon informed me. “That’s what I have insurance for,”  was my reply. I know too much about procedures.  I trusted my surgeon, and I wanted to be out while he did what he needed to do.  A member of  his office staff chided me about the request: “You’re a baby, I’ve had several lumps removed in this office myself, and went back to work afterwards.” I complained to the surgeon about the inappropriate comment.

   Like a frightened child, I didn’t want to lie still.