I was recently asked by a colleague who was preparing a presentation about ethical issues in pediatrics to share with him my thoughts about this topic, in light of my experience as a pediatric nurse. My recounting grew into an essay about the joys and challenges of caring for children and their families at some of the most vulnerable moments of their lives.
Easy to Forget
There’s something I said regularly during my years at the bedside. I remember saying it one night when a neurosurgeon and I were using a syringe and scalp vein needle to draw 30 milliliters of crankcase oil-colored spinal fluid from the brain of a tiny baby. I said, “You know, it’s easy to forget that not everybody’s job involves doing stuff like this.” I heard that sentiment many times from the other side as well: I worked in a NICU at a regional referral hospital, and grandparents would come from outstate to visit their newly born, seriously fragile grandchildren. They would say, “We never knew there was a place like this. And we wish we didn’t know.”
In order to continue to function in the profession we have chosen, we have to become accustomed, inured, some might say desensitized, to regularly doing extreme things, including things that cause pain to the people we are trying to help. There’s a subset of caregivers, especially if they don’t have other, unrelated but strong, influences and activities in their lives outside of work, who lose track of this discrepancy, to the point where they aren’t able to articulate the extremity of what we do – it’s like asking a fish about water. But in the NICU where I worked for 25 years, one of the reasons why we survived and why I loved so many of my coworkers is because they had lives outside of work – families (we helped each other raise our children), crafts (many knitters, scrapbookers, quilters, all giving each other ideas), culture (many musicians, theatergoers, movie fans), and literature (we had a lending library and an informal book club during breaks). They were whole, broad people, with a particular skill that society finds useful but takes a great personal toll.
A Family Affair
Since pediatric patients (except for some older teenagers) can’t act independently, pediatric health care is by necessity a family affair. So another aspect of peds is that the emphasis on the family often gets extended to staffs and caregivers as well. Staffs on pediatric units and in clinics are more likely than on adult units to be seen through the metaphor of a family (sometimes overtly in the cultural language of the unit, sometimes covertly by leaders who try to re-create the nuclear family among their staff). This can lead to all kinds of problems with boundary issues, stress for staff members for whom family is a negative or even traumatic construct, and extra mental work for people who are just trying to manage their intra- and interdisciplinary roles, let alone sibling rivalry and funny uncles.
When Errors Happen in Pediatrics (or, When Bad Things Happen to Helpless People)
Errors, especially those that reach the patient, and most especially those that cause demonstrable harm, are traumatic for everyone whenever they occur. But in pediatrics, errors are especially devastating because most pediatric patients can’t speak for themselves, and their families are left with the added burden of feeling that they failed in their duty to protect their children from harm.
The “brand” of pediatric health care is full of very visual stories about miracles – tiny premature babies with tubes and wires all over their bodies who survive against all odds; bald kids with cancer who grow up to be physics majors; toddlers missing a limb who are learning to walk with prosthetic legs. The reality is that errors of commission and omission occur in pediatric health care, but the backdrop of the narrative of miracles makes the errors that do happen more salient and less understandable and forgivable – it’s regarded by some as if the person who made the error is ignoring God’s will, or even working against God’s will.
Pediatric Weight Differentials – Source of Error
In adult medicine it’s possible for one patient to weigh twice as much as another. But in a pediatric unit, it’s not unlikely for a nurse to have two patients assigned to her or him, one weighing 4 pounds (e.g., a post-op premie or a newborn with failure to thrive) and one weighing 400 pounds (e.g., a morbidly obese teenager with asthma). When you have weight differentials this wide, the potential for overdosing, underdosing, and errors in prescribing, dispensing, and administering medications is huge. Computerized medication management systems help minimize the chance of error, but the overarching issue remains.
There’s a useful teaching question for health care professions students: What is the correct dose of most medications? The answer is: one. One tablet, one capsule, one teaspoon, one milliliter, one suppository, one spray. Drug companies create their products this way, for ease of use and for safety, and for full-size human beings, it works quite well. However, in pediatrics, all bets are off.
Patient-Controlled Analgesia in Pediatrics
This topic is symbolic of the unique world of peds. When hospitalized grownups have pain, they may be provided with IV pumps that let them, within pre-programmed safe parameters, give themselves bumps of pain medication. Pediatric patients younger than about 15 can’t reliably manage this process themselves. But since the pre-programmed pumps are a safer, easier, and more sterile way to manage pain using IV meds, many pediatric patients, including infants in NICUs, now have the pumps, with the boluses of medications given by nurses, often as an adjunct to continuous infusions of those same medications. There are errors associated with these pumps, so that they may be seen as less safe than the former, intermittent, one-shot-at-a-time process, but actually the errors are fewer now, and overmedication is no more frequent. This pump technology is still resisted by some pediatric health care professionals.
Just Say No: Preventing Narcotic Addiction in Small Children
When I started my career in pediatrics in 1967, the received wisdom was that the few premature babies that survived did not experience pain. It wasn’t unusual for a baby to have major thoracic or abdominal surgery and receive no post-op pain medication at all. We thought we were saving lives, because pain medications cause hypotension. In the rest of pediatrics, the word was that, since toddlers and young children snapped back from surgeries and fractures more quickly than grownups (which was observably true), they didn’t need pain medication for such a brief span of time. For teenagers, our goal was to keep these kids from learning that taking drugs can feel good. The overarching goal was to prevent drug addiction, and if the patients had uncontrolled pain, the trade-off was worth it.
We have come a long way since then, but those attitudes and values remain, especially in some health care professionals of my generation.
Reluctance to Refer to Pain Management and Palliative Care Services
In many in-patient settings, including pediatrics, the people (especially the physicians) who are the experts in pain management are the same people who are experts in hospice and palliative care. They also tend to be people who are open to Complementary and Alternative therapies. They may dress differently than mainstream physicians and their body language and proxemics are often different than mainstream physicians. Their offices may be in the basement of the hospital or even off-site. They may well be the only physicians who attend presentations about caregiver self-care, even though they are the ones who may need it the least. And physicians who are allergic to hospice and palliative care for children, seeing it as admitting failure, may view a referral to the Pain and Palliative Care Service as a referral to a service that is a cultural outlier: not scientific, not medical, not one of us. The patients and their families, as well as the nurses who are caring for these children with poorly controlled pain, all suffer from this reluctance to refer.
End-of-Life Care for Pediatric Patients
Decisions about withholding or withdrawing treatment are very different for a premature baby, a toddler with end-stage cancer, or an adolescent who is in a vegetative state after a brain injury, than they are for a 90-year-old person, especially a 90-year-old person with an advance health care directive. But futile treatment is a reality in pediatrics, too. A frequent scenario involves a group of providers who have done everything they are trained to do and that their oath directs them to do, to save the life of a child. When the life is not saved, a pediatric death with dignity is not in their mental repertoire, but neither is a referral to experts in pediatric death with dignity. The ethical principles of beneficence, non-maleficence, efficacy, and justice, when applied to pediatrics, assume that the child’s parents are the ones best able to decide for and advocate for the child. But many times when treatment has become futile, the parents have no experience in these kinds of decisions and take their cues from the providers. The nurses are caught in the middle, continuing to perform painful, time-consuming, possibly expensive, clearly futile treatments. The term Moral Distress resonates with every nurse who has walked this path. And, going back to my initial comments about easy to forget, our families, friends, acquaintances, and the strangers we encounter in our daily lives, usually have absolutely no clue about this path we are walking.
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