Crossing Professional Boundaries to Benefit a Patient; Do We Alter Ethics to Cope or Help?
I once broke all my personal rules and disregarded patient boundaries for a child with no parents in the hospital. My article looks at common reasons we keep in touch with patients and asks nurses to evaluate why. Is it for us or them? I encourage my peers to think about it and know the difference. If building relationships outside the hospital with clients is becoming a coping mechanism, I encourage my peers to explore options that do not exploit our patients.
I'll never forget a little girl I helped take care of for over four years in the Pediatric ICU. J was one of a kind... literally. She had an autoimmune disease no other child in the world has ever been diagnosed with. At two weeks old, she was admitted to our unit with one foot in the grave surrounded by arguably the best Pediatric Intensivists in the world with no answers or explanations. For years we treated her based on trial and error with no precedent to guide us. Her parents lacked the resources to be part of her care. They loved her, but their circumstances made it impossible for them to see her.
Our staff raised J, and we broke every professional boundary imaginable along the way. We bought her clothes, threw birthday parties, got her Christmas presents, read bedtime stories, rocked her to sleep, potty trained her, scrapbooked her milestones, photographed her holidays, decorated her room, purchased toys books blankets and movies, and did her laundry. It was common practice for staff to "volunteer" a day off to spend with her. We also managed her central lines, drew frequent labs, corrected lytes, titrated drips, document hourly vitals, gave countless high-risk meds, held her down for procedures, perform trach care, monitored vent settings, and dealt with everything else that comes along with a very high acuity and unpredictable sick child. Somehow, for years, this remarkable group of clinicians met J's complex medical and developmental needs.
J's immune system was so ravenous it had to be almost completely terminated to keep her alive. After four years of spinning our wheels the decision was made to try a bone marrow transplant. We'd tried everything else and she couldn't just stay on our unit for the rest of her life. This is when they dropped the bomb on us. We were informed she would be transferred to the BMT floor in a week. A unit-wide email explained, in no uncertain terms, we would be expected to "comply with patient confidentiality laws". We could not visit, request updates, send gifts, or have any contact with J once she was transferred or we would risk termination.
By now I had worked in PICU for eight years and have had my fair share of run ins with NICU nurses. I have made no secret through my career of my distaste of NICU nurses showing up to see patients when they are re-admitted months and even years after they graduate. A big part of the problem is they don't understand the kid isn't a neonate anymore and they give the parents advice that doesn't apply to a term adjusted 9 month old, or they want updates they know I can't give them when the parents aren't around and put me in an uncomfortable position, or they start pointing out things they think I am doing wrong because they don't know they aren't in NICU anymore and I can't tell them why I am doing it differently without giving out PHI. They use their badge to come on the floor through the employee entrance even when the parents aren't at the bedside and often think I am being rude when I ask them to leave because I owe them professional courtesy.
I had never in my career visited a patient on another floor except for 3 times at the patient or parent's request. Each time I came before work so I would be clean, checked in as a visitor, staid out of the way, and gave no medical advice or opinions. J's situation was unique. She was a developmentally appropriate non-verbal preschooler who had lived her entire life inside one room in one hallway with one group of people meeting her every need. In Pediatric Nursing, the nurse does the nursing and the parent does the parenting. How do you transition to a new unit when the nurse is also the parent? They were putting her on a new unit (which may as well have been a new planet for her) and taking away the only people she trusted to comfort her right before a bone marrow transplant.
It felt like a double punch. On one hand, I had been watching nurses visit patients transferred to other floors my whole career with no reproach or consequence. On the other hand, here was a patient who could benefit from continued contact with her previous caregivers and suddenly confidentiality and boundaries are a priority. I discussed the matter with the ethics department. Knowing they could hide behind HIPPA, but their true motive was unclear, I suggested floating nurses to BMT for a few days until she had time to get familiar with her new environment and trust the staff. I suggested letting our child life specialists trade departments for a while or at least allowing access to only our child life specialist so at least one person she was familiar with could help her make the transition outside of the clinical staff. I might as well have sent a carrier pigeon.
In the end she was sent for a bone marrow transplant by herself. Her parents came once. She was very sick and developed GVH. Since BMT isn't ICU the nurses have four patients instead of two. So, she got several CLABSIs with less supervision alone in her room all day. She regressed quite a bit since it took several months before the physical therapists realized she could walk or anyone (including ST) realized she could sign. Ironically, I know these things because her new unit had to call us and ask us for help with her. Thus, I was no longer banned from an update as I helped their nurses learn the best ways to keep her from contaminating her lines or intentionally decannulating to get company.
I never found out what happened to J. I never found out why administration was so determined to enforce the rules in her case when I have never seen it done before. I never will know either since I don't work in the same city anymore. What I do know is last week no one cared when a home health nurse drove my patient to the hospital, on her day off, for an outpatient procedure. I know a nurse who babysits for a former patient and another who is her former patient's Godmother. I know a nurse came by every morning after work to see my patient for two weeks until I asked her to stop since the patient was a minor by themselves. She didn't stop, she just emailed my boss and said I was harassing her.
I also know very few nurses stay in touch with patients because it benefits the patient. J's case was among the few where it would have. Most nurses keep in contact with patients and families for their own psychological well-being. It makes them feel good. Nursing can be overwhelmingly rewarding and overwhelmingly defeating all at the same time. There are a lot of grey areas in our field, and much of what we do can be classified as an art more than a science. But the once certainty is the point of it all is for the well being of the patient. Any time you must make an ethical judgment call, the only question you should be asking yourself is "Does this benefit my patient?" Nothing you do regarding your patients should be for you. If you need help coping, need to feel appreciated, need to be reminded you make a difference, or need to know you did a good job there are countless ways to do this without unknowingly using your patient to meet your own needs.
On the other hand, don't forget nothing is certain in healthcare. In this instance J isn't one of a kind. There will come a time when the best thing for your patient is to be more than a nurse. Your patient will need you to change the boundaries (not eliminate them change them) for their well-being, not yours. Learn to know the difference.
Note: J's information, demographics, and medical details have been altered to protect the patient's privacy
About GaryRay, BSN, RN
Gary has been a Pediatric ICU Nurse for the last 11 years, she has recently made the transition to Adult Radiology and has been accepted into the MS in Project Management program at USC. She looks forward to this new chapter in her career.
Joined: Jan '16; Posts: 144; Likes: 268
Radiology; from US
Specialty: 10 year(s) of experience in Pediatric ICUMar 20I wish I knew the answers. I feel like the parents should have been notified and added the caregivers to the "allowed visitors" list for their child, but this is in the past and hindsight is 20/20. My son died after four weeks in PICU and I bonded closely with two of his nurses. We are friends on Facebook. They came to his funeral. I was invited to one of their weddings. They cheered me on throughand honestly they were a big reason why I chose to become one. Is this unethical? My son has been dead for 11.5 years now. The three of us are still friends. They have children of their own now.
I am sorry for your loss in not knowing what became of this baby. I know it has to ache deep.Mar 20I don't know - I don't see why the rules were suddenly enforced. I believe it should be on a case by case basis, it seems continued contact would have benefitted this child's care and improved her outcomes.
I am one of those pesky NICU nurses. We are very close with our patients and parents. Sometimes we are the ones who provide them some sort of stability and normalcy for months. We break all sorts of rules in the nicu. I have parents of ex patients on Facebook. They text me sometimes. I have attended the first birthday party of my primary. Why? Because I was a huge part of their lives for so many months and the parents wants me there. I do not visit kids on other units due to the infection risk and I would not tell another nurse in another area how to do her job. I have knowledge of preemies and newborns and maybe up to a year old - after that I'm pretty clueless :PMar 20Interesting topic.
Something to consider is that facility policy and even laws do not define ethics nor the nursing profession. By modern western tradition we stop our care once the patient leaves our floor but that does not and should not define nursing. Just because it is does not mean it should be.
Nursing is holistic, it expands beyond just the patient's physical health and even beyond just the patient. One of the core differentiators of nursing is that we care for the person, not the disease.
You were that child's healthcare advocate which means you were a part of the healthcare team, you did nothing wrong ethically, professionally, or otherwise. Even those other examples you cited such as a nurse off-duty driving a patient to the hospital, we ethically (and legally in the case) do not stop being nurses when we punch out.
There is much confusion in nursing between our legal duties, duties as an employee, our professional duties, and our ethical duties. They are not all the same thing and unfortunately, too much legal and employee duties are being confused with professional and ethical duties.Mar 20What an uplifting humane story.
As an administrator and Nurse I struggle at times to walk that fine line. I do know this, there maybe something else going on and no one never knows the whole family story, one can guess and hindsight is everything. I do not see your unit did anything wrong for this little one. I am wondering where the state child protective services were and maybe they were involved, you just wrote about your view/unit view.
For the life of me I will never understand why people feel they have the power to make decisions that affect a life in such a major way it upsets the apple cart, in this case I suspect it was based on the cost. Not allowing your unit the benefit to have an ongoing relationship with this little one to me was in my opinion more harm to the child for relationships and love have formed and it sounds like this one needed all she could get. The allowance of ongoing relationships would promote healing, promote the Childs psycho-social development. Their decision to not continue this was a cold harsh one that may have been decided with good intentions. Next time I think I would have included the social worker staff and psy staff for assurances that what bonds have been formed are not abruptly cut off.
Lastly as a nurse I can say I have bonds with some of my patients I would not be human if I did not. Having great boundaries and sticking to them will protect the patient and yourself.
You make me proud to be part of the Nursing Profession, you and your unit exhibited to me the true nursing spirit, you all are truly Nurses who showed great compassion, great mercy, great humanity...you all are the best nurse and I would be very happy and blessed to be like you.Mar 20I dare say this ill-conceived management decision came about like so many other ill-conceived management decisions. Those responsible undoubtedly give no more thought to the harm they caused the patient than they give to the consequences of any of their other poor decisions.Mar 20This is a very touching story as far as the nurses who had a positive effect on this child's life.
This didn't have to turn out this way at all. These kinds of decisions boggle the mind as far as what life is even about and what people could possibly be thinking to make such cruel decisions. This was little more than misuse of a law for reasons of greed/business. I will go ahead and call that evil. A structured rotation of visits could've just as easily (and very legitimately) been made part of this child's care plan and all of it would've been acceptable under HIPAA.
Anyway, OP, thanks for sharing this experience and I trust that you and your coworkers have peace about your intentions and actions.Mar 20I think the ball was dropped with Baby J back in the beginning. I've been involved in several cases similar to this over the course of my career. To avoid some of the "mess" of these cases, it's usually best for everyone to have clear roles in their relationship with the baby. It is unwise for anyone to be in both a "nurse/treatment" role and also a "parenting" role simultaneously. Such blurring of roles is confusing for the baby and also for the staff.
Appoint 1-3 "substitute parents" to interact with the baby as a parent would -- and they are never assigned to care for the child as a nurse/physician. They should be hand-picked to assure that they understand their role and know that they will be turning over that role to the real parents someday. (kind'a like being a foster parent) If there have to be changes in those substitute parents, the transition is done in a planned, gradual way so that the child's feelings of security and safety are considered.
The other nurses should stay in the nursing role and not become substitute parents. Keeping the roles clear and separate helps everyone and avoids some of the boundary issues.Mar 21Based on the information you provided, the best thing for that patient, would have been to be able to transition with the assistance of those that had become her teachers, family, and friends. That would have been good nursing care, addressing the child's psychosocial needs with anticipatory guidance with regards to her developmental age. All factors that you were considering in your interactions. The hospital ignored all.
I don't believe you crossed any professional boundaries, on the contrary. You did what nurses do, we care. You were advocating for someone that needed an advocate. When I see the nursing assistants in long tern care with patients, it is beautiful. Often these folks have no one and the CNA's become family. I have seen CNAs just pour love and good care into the most vulnerable. Often they know just how or what the patient needs because of this. You did something similar.
I remember before HIPPA, patient records and information was always confidential. Those that worked with the patients and their records knew this and just respected the patients, but if we needed to discuss vital signs we didn't have to be paranoid about someone overhearing an O2 sat or heart rate. The expectations where that those that had climbed through so many hurdles to be licensed could be trusted to do the right thing. HIPPA is now obsolete, in my opinion, due to internet hacking.
I have done more volunteer nursing that anything else, just because there was a need, each time. I have seen a lot of human suffering and see the desire to help and care as the essence of nursing. It's a shame that we have so many artificial boundaries.Mar 21Sorry busy week at work i've been a terrible OP. not.done.yet,MSN,RN I am sorry to hear about your son. Like I said, in situations where I was invited by the family or requested by the patient to visit outside my unit I never felt I was crossing any ethical lines. In this case I was helping my patient. But I was careful to keep my role as a visitor clear and not abuse my privileges as a staff member. I wouldn't visit after hours, use my badge to access the floor, or cause there to be too many visitors in the ICU any more than I would look up the patient's chart once I wasn't caring for them. In this patient's case the parent's were intermittently involved over the course of several years... sometimes they didn't come for months.Mar 21Vintage_RN, BSN:
We respect and understand how primary nursing can cause you to become attached to a patient. NICU nurses visiting families and patients they cared for, offering support and encouragement to the family they know, letting go of the role of the nurse, and taking on the role of a visitor are great... even helpful.
The point of the article is not to argue whether contact outside of direct patient care is ethical. The point is to start a dialogue about why we are doing it. Nothing is black and white in healthcare. Sometimes the patient or family doesn't need you after they leave, reaching out and seeking contact is for your benefit not theirs. Sometimes staying connected with the staff helps them heal, then you are doing a service to them. I've seen parents get attached to being "the parent of the sick baby" and repeatedly bring their infant back insisting they're sick when they aren't. In many of these cases their contact with their previous nurses hindered their acceptance and progression past the hospital as they unknowingly validated their claims based on what they were being told.
I'm still learning about the adult world but I can guarantee to you every hospital has an Ethics Department. Taking pictures, throwing parties for patients, and buying gifts for patients are all things against most hospital policies. I have no regrets about any of those policies I may have "misinterpreted" while caring for J.
I do believe, as professionals, we need to remember this is not about us. We are human, and the distinction is difficult to make. Nursing is, in essence, a very personal and intimate profession. There is no real "Right" answer here. It always gets stickier working with kids, but at the end of the day you're right, our scope doesn't end at assessment skills and giving meds. As long as we can back ourselves up with evidence that what we are doing is benefiting the patient I can see it as ethical... inside or outside the facility walls.
Thank you, that is a very kind complement. CPS had been intermittently involved with the patient as the family couldn't be. Somewhere along the way they gave custody back to the parents because they knew the child would be hospitalized until further notice... it just made getting consent easier. I don't see how, at the very least, letting the child life specialist (who was extremely involved in her daily activities and schedule) assist in the transition was rejected. Cost was really not a factor at this point. No one goes 4 years in the ICU without getting a HAI or 20. The hospital was eating the cost of this kid's care one way or the other and her price tag was going to be in the tens of millions, whats a few grand at that point?
The "substitute parent" idea would have been brilliant. On one hand we had some hairy codes because everyone was too emotionally connected with the child to objectively work through the code efficiently. On the other hand the same person would not have been responsible for J's medical care and personal care. Unfortunately that is the one thing that would have come down to money. Staffing is always tight. She should have never been in more than a two patient assignment but often was put with two other patients and frequently with no aid. We tried to get her a sitter when she got older and the hospital wouldn't budge. It was less the cost and more the lack of resources. Even if the "substitute parents" had had full assignments with her, I'm sure they would have said that was one more patient a nurse could have been caring for.
Pediatrics or not everyone will find themselves in situations like these eventually (maybe not as extreme as J's but it will happen) I only want to raise a little awareness about what is best for our patients and what drives us when we go beyond the bedside for them.
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