Archive for the ‘patient perspective’ Category

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An Oncology Nurse’s Heart: Helping Dying Patients Find Their Own Paths Home

July 24, 2015

Julianna Paradisi, RN, OCN, is an oncology nurse navigator and writes a monthly post for this blog.

Heart Break = Heartache  graphite, charcoal, water color, adhesive strip by julianna paradisi

Heart Break = Heartache
graphite, charcoal, watercolor, adhesive strip, by julianna paradisi

The disadvantage of building a nursing career in oncology is that a fair number of patients die. Despite great advances in treatment, not every patient can be saved. Oncology care providers struggle to balance maintaining hope with telling patients the truth.

Sometimes, telling the truth causes anger, and patients criticize providers for “giving up on me.” In a health care climate that measures a provider’s performance in positive customer satisfaction surveys, paradoxes abound for those working in oncology.

Providers may also be criticized for delivering care that is futile. “Don’t chemo a patient to death” and “A cancer patient should not die in an ICU” are common mantras of merit.

Maybe because I live in Oregon, a state with a Death with Dignity law, or maybe it’s the pioneer spirit of Oregonians, but I don’t meet a lot of patients choosing futile care to prolong the inevitable. In fact, many patients I meet dictate how much treatment they will accept. They grieve when they learn they have incurable cancer, and most choose palliative treatment to reduce symptoms, preserving quality of life as long as possible.

But they also ask questions: “How will I know when to stop treatment?” or “What will the end look like?” Their courage in facing death amazes me. It often brings me to tears, too.

One advantage of building a nursing career in oncology is that I feel no compulsion to hide my tears from a patient during these discussions. In the context of compassionate presence, tears represent emotional authenticity, theirs and mine.

While nurses may sometimes grieve with patients, they can also offer them therapeutic support.

I have developed a few tricks so I don’t let dying patients down during the moments they need me most. My favorite is to ask a patient what he or she does—or, if they’re retired, did—for a living. As I listen to the story, I picture what they looked like in a business suit, wielding a hammer, baking a cake, or writing a novel. I picture her at the head of a classroom, teaching children to read. In my mind I say, “I see you,” and they become their authentic self, not the person cancer tries to reduce to a recliner chair. Read the rest of this entry ?

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The Challenge of Bearing Witness to Patient and Family Suffering

July 8, 2015

“How do I honor this pain so that it teaches and blesses and does not destroy?”

By Jacob Molyneux, AJN senior editor

Illustration by Neil Brennan. All rights reserved.

Illustration by Neil Brennan. All rights reserved.

This month’s Reflections essay (Why?) is by a pediatric chaplain. As the title indicates, it’s about the questions we all ask in the face of suffering and loss. The precipitating event for the author is the baffled, enraged cry of a father who has lost a child, and her own struggles with the impossibility of giving an acceptable answer—to the child’s parents, or to herself as a daily witness of loss and suffering.

How does a chaplain, or for that matter a nurse, witness the pain of patients and their families time and again and keep from either shutting down or being overwhelmed by the stress and emotion? As we’re often reminded, self-care matters or there’s nothing to give the next time: yoga, gardening, humor, family, cooking, whatever works for a person. Is it enough? Yes, and no, says the author. Here’s an excerpt:  Read the rest of this entry ?

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Nurses Aren’t Just Healers, They’re Teachers Too: A Patient’s View

June 3, 2015
Illustration by Jennifer Rodgers. All rights reserved.

Illustration by Jennifer Rodgers. All rights reserved.

A teeny red bump had mysteriously appeared on my left index finger. It hurt when I pressed on it. I figured it was nothing. . . .

That’s the start of the June Reflections essay in AJN, “Ms. Lisa and Ms. MRSA,” a patient experience narrative by freelance writer Shannon Harris. As luck would have it, the bump on her finger, it turns out, is not nothing. It’s MRSA.

The diagnosis takes a while. Finally the situation worsens, and surgery is needed. The author takes it all in stride, at least in retrospect:

The third physician stood out to me most. He asked to take a picture of my green and black, staph-infected finger with his iPhone. “Sure. Look at it! I thought this only happened to pirates,” I told him as he snapped away. He glanced at the young, button-nosed nurse standing beside him. “Don’t you want a picture? For your records?” he asked.

She shook her head, squinting and gritting her teeth. “I know. Yuck,” I said. I later shared photos of my infection journey online, to the great wonder and disgust of my friends and family. Before that, though, came surgery.

The author’s tone is light, but the situation is a scary one for any patient. Read the rest of this entry ?

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Good Jokes, Bad Jokes: The Ethics of Nurses’ Use of Humor

April 29, 2015

By Douglas P. Olsen, PhD, RN, associate professor, Michigan State University College of Nursing in East Lansing, associate editor of Nursing Ethics, and a contributing editor of AJN, where he regularly writes about ethical issues in nursing.

Humor has real benefits. But when does nurses’ joking about patients, each other, and the care they provide cross a line?

Photo from otisarchives4, via Flickr.

otisarchives4/Flickr

“Nurses make fun of their dying patients. That’s okay.” That was the provocative title of an op-ed by Alexandra Robbins in the Washington Post on April 16. The author’s treatment of the topic was more complex than the title suggested, but some examples of humor given in the article were troubling.

For ethical practice, nurses must consider if it is ever appropriate to discuss the clinical care of patients for humorous purposes. An easy answer would be—never. If patient care is never joked about, then no one’s feelings are ever hurt and nothing inappropriate is said as a joke. However, my experience as a nurse in psychiatric emergency and with human nature suggests two arguments against this approach:

  • Jokes will be made despite any prohibition.
  • Considerable good comes from such humor.

If jokes are going to be told anyway, it’s better to provide an ethical framework than to turn a blind eye. If joking about patient care is sometimes acceptable and sometimes not, nurses’ jokes are more likely to stay ethical if they consider in advance under what conditions it’s ethical to joke and how one distinguishes ethical from unethical humor.

According to Vaillant (1992), humor is among the most mature of the defenses. “Like hope, humor permits one to bear and yet to focus upon what is too terrible to be borne” (Vaillant, 1977). Those who have experienced the stress of intense clinical practice know the value of finding humor in life’s tragedies. In addition, patients who are able to cope with their physical and emotional pain are often those who find the humor in tragedy.

Still, some attempts to make people laugh are unkind, and it hurts to be the subject of others’ laughter. Vaillant distinguishes humor from wit, noting that humor never excludes (1977). It may help nurses to enjoy the beneficial effects of humor and avoid the effects of harmful humor if we attempt to identify some characteristics of appropriate humor. Watson (2011) offers some useful suggestions for self-examination to determine the acceptability of clinical humor:

  • Is the joke about the patient, the situation, or the clinicians themselves?
  • Does the joke reveal disdain or contempt for the patient?
  • Could the joke affect care? An example might be jokes suggesting that a patient deserves pain or disability. Wear et al. (2006) demonstrated that medical students treated patients considered responsible for their pathology as “fair game” for derogatory humor. And nurses have more difficulty empathizing with patients they consider responsible for their pathology (Olsen, 1997). Therefore, jokes enhancing this perception could erode a nurse’s relationship with that patient.
  • What is the underlying intent of the joke—is the motive to influence clinician behavior or attitude? This includes both harmful and helpful intent. Some jokes could be used to gently chide a clinician toward more empathy. Upon hearing a nurse refer to drug-seeking patients in a derogatory tone, I may retort, “Of course they’re lying about their pain. What would happen if she told the triage nurse that she has a five-bag-a-day habit and her dealer is out of town?” The comment generally gets a laugh, and my goal is to give the nurse a chance to consider the patient’s perspective and perhaps see the situation less as despicable deception and more as the desperation of unmet needs.
  • Is it true humor—that is, is it inclusive, a clever juxtaposition, insightful—or is it simply mean-spirited mockery of another’s misfortune? This distinction is subtle and is often dependent on personal intuitive reaction: Does it feel cruel, callous or uncaring? Do you feel shame at saying or hearing it? Does laughing at the joke make you uncomfortable? These reactions vary widely, as can be seen in the public debate regarding what is called “political correctness.”

Filter yourself when thinking to tell a joke and reacting to another’s humor. Pause a moment before telling the joke or reacting to another’s comment; let your intuition and values weigh in. Then, speak—or don’t.

A more difficult ethical issue is whether it is acceptable to make potentially hurtful jokes if one can reasonably ensure that the joke remains within the clinical circle. Read the rest of this entry ?

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The Challenge of Eating Disorders: A Teacher Learns a New Mindfulness Technique

April 27, 2015

“She’s brought a cup with her. This is not unusual. Clients often bring food or drinks they’re required to finish—but when Mariko reaches inside the cup, I hear the brittle clicking of ice and look closer. There’s no beverage. She pulls out a piece of ice and, without a word, curls up on her side, cradling the cube tenderly in her palm.”

By Jacob Molyneux, senior editor

Illustration by Anne Horst for AJN.

Illustration by Anne Horst for AJN.

We hear a lot lately about mindfulness and its benefits in the workplace for dealing with stress, increasing productivity, and the like.

It’s been pointed out lately that mindfulness has become a tool with many uses, some more in keeping with its role in various spiritual traditions than others. Such traditions seem to use meditation practices in order to cultivate compassionate awareness of the varieties of suffering arising from the impermanence of everything from pleasant and unpleasant feelings and the weather to the lives of our loved ones.

This month’s Reflections essay in AJN is by a mindful movement teacher at an eating disorder treatment center. Eating disorders can involve mental and physical suffering that’s unrelenting and self-sustaining. Many clinicians and therapists find patients with eating disorders very challenging to work with. The essay, called “Distress Tolerance,” tells the story of an encounter in which the patient teaches the teacher a surprising new mindfulness technique. Here’s the opening:

How are you?” Asking this question always feels ridiculous, especially with someone undergoing eating disorder treatment, but I say it automatically.

“Average,” Mariko responds quietly, tucking a strand of limp, jet-black hair behind her ear as she bends to select a yoga mat and two pillows.

“Average” is code for something much worse. Though she is in group treatment, it’s just us today. Her group tends to be small—and volatile. I blink in surprise as she chooses her spot, unrolling her mat quite close to mine.

Read the rest of this entry ?

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A Nurse Ethicist’s Analysis of a Recent Nursing Home Sexual Consent Case

April 21, 2015

By Douglas P. Olsen, PhD, RN, associate professor, Michigan State University College of Nursing in East Lansing, associate editor of Nursing Ethics, and a contributing editor of AJN, where he regularly writes about ethical issues in nursing.

scales of justice/by waferboard, via Flickr

scales of justice/by waferboard, via Flickr

An 78-year-old retired state legislator and farmer in Iowa is currently on trial for having sex with his wife, who has severe Alzheimer’s disease, in her shared room in a nursing home. He has been charged with rape.

The case highlights two ethical questions or conflicts:

  • When is protection needed and when is it intrusive and harmful?
  • What are the mental abilities required to consent to sex?

Consenting to sex is not the same as informed consent for treatment. In treatment, a clinician obtains consent to act on (treat) the patient in a way that will benefit the patient. By contrast, proper consent for sex is mutual and both parties benefit.

To extend the comparison: a patient’s decision to consent to treatment is generally made by balancing the benefits, harms, and risks to the individual patient. The decision to engage in sex often involves consideration of another’s satisfaction—it is not unknown for one spouse to agree to sex to please the other, even though he or she would not otherwise want sexual contact.

Another complicating factor in the question of sexual consent is that gender matters. While the social ideal is to consider sex consensual, societal understanding often tilts toward considering the male as the aggressor and the female as the gatekeeper. In addition, we often assume that power, especially physical power, is not equal in sexual relations.

Decision-making capacity. A patient must have decision-making capacity to give valid consent for treatment. Such capacity is not considered a blanket characteristic, but is assessed in relation to the risks, benefits, and complexity of the specific treatment decision.

The assessment of capacity in relation to the specific decision can also be applied to consent for sex. Unfortunately, a proper level of mental ability needed to confer capacity for sex is not clearly established and can vary in relation to circumstances. The woman in this case had severe mental impairment, but that does not necessarily mean that she lacked the capacity to consent to sex with her husband. Differences of opinion regarding the level needed for her valid consent are illustrated in the following summary of an exchange from the trial included in a recent New York Times article:

Mr. Yunek [the defense attorney] asked Dr. Brady [the center’s physician] if “Donna is happy to see Henry — hugs, smiles, they hold hands, they talk — would that indicate that she is in fact capable at that point of understanding the affection with Henry?” Dr. Brady said no, calling that a “primal response” not indicative of the ability to make informed decisions.

The defense attorney is implying that her actions indicate desire and willingness and that this is a sufficient level of mental ability for valid consent; the physician, on the other hand, suggests that such “primal responses” are not sufficient to indicate a level of mental ability. This is not a disagreement about what her ability is, but about what is the proper degree and type of ability needed to consent. It’s not so much a disagreement about facts as about values.

One approach to establishing whether sexual contact between these two older adults was appropriate is to examine each relevant factor. These include the following: Read the rest of this entry ?

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Morgellons: Whatever the Cause, the Suffering Is Real

April 2, 2015
Image, magnified 60 times, depicts fiber-embedded skin removed from a facial lesion of a 3-year-old boy who the Morgellons Research Foundation says has Morgellons.

Image, provided by Morgellons Research Foundation to AJN in 2008, described as depicting fiber-embedded skin removed from facial lesion of 3-year-old boy with Morgellons (magnified 60x).

By Jacob Molyneux, senior editor

As you may have read, Joni Mitchell was recently found unconscious in her home and is now in the hospital. She has attributed her health issues to a syndrome called Morgellons—a condition in which sufferers experience what they describe as fibers emerging from their skin, along with intense itching, sores that won’t heal, and a host of nonspecific symptoms such as fatigue and concentration problems.

Whether it’s a clinically verifiable illness or, as some have argued, a manifestation of a psychological condition known as “delusional parasitosis,” Morgellons is plenty real to those who experience it.

We covered this controversial illness several years back in an article called “AKA ‘Morgellons.'” I interviewed two nurses and several others about their experiences. One of the nurses (see this sidebar) was convinced she had caught the condition from a patient. I also spoke with Michele Pearson, MD, the lead investigator of a then-pending CDC study to look into the disease, which had been announced in response to an extensive patient advocacy campaign. As she put it at the time:

“It’s a complex condition . . . It may be multifactorial. What we now know is through self-report or anecdotal. There’s nothing systematic.”

Read the rest of this entry ?

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