When Your Patient is Not the Only One Who Needs Care
Another post in the #AtoZChallenge (unfortunately not getting off to a good, consistent start!)
My friends who work as pediatric nurses often say that when you’re taking care of the “kiddos,” you are inevitably taking care of their parents as well. It is hard to separate patient from parent, or patient from caregiver. In my experience, the same could be said of the adult world: taking care of a patient is a whole family affair.
I can count numerous times when my job as a nurse not only entailed caring for the needs and concerns of my adult patient, but also quelling the fears and fielding the queries of their spouse, children, siblings, parents, or other caregiver. Depending on the situation, I could be an intermediary between the patient and the provider, the family and the provider, the patient and their family, or even between family members themselves. Back when there were no visitor restrictions on the unit, there were times when I would teach a patient’s wife how to administer tube feeds, times when I was flagged down in the hallway by a concerned son to explain why his dad looked like “that,” times when I would stand with hands clasped as a husband berated me about why a doctor had not seen his wife yet or why her surgery was delayed, and times when I had to give a little tough love to the family and encourage them to allow the patient to do more for themselves.
There were also times when simply because I was a nurse, I also became a confidante of the family, a friendly face, someone whom they trusted to care for and advocate for their loved ones. This next story was one of those instances.
A couple years ago, I took care of a patient who had transferred to us from an outside hospital for additional care. Per the family, he had been referred to us by his neurologist “to get antibiotics” because he had an infection. By the time he showed up on our unit, he already looked quite fluid overloaded and his functional abilities seemed to have declined a considerable amount. He could not really talk let alone eat or move most of his extremities. We had him on tube feeds and considered him a “total care” patient, meaning he was unable to move, bathe, toilet or feed independently.
A few days later, his family was brought in for a meeting to discuss the patient’s goals of care and the plan moving forward.
Basically, from a medical standpoint, it did not appear that any further treatment would bring about meaningful results for the patient and rather might actually hinder his quality of life.
We had the wife, two daughters and son in the room, as well as a third daughter calling in on the phone. The attending physician, nurse practitioner, social worker and I were all present as well. The conversation started as most do, with the attending discussing some of the events leading up to the patient’s presentation, what we have done so far as well as their effects, and the direction that it seemed like the patient was going in despite further treatments. I wasn’t required to speak much, but my presence served to comfort the patient and family. The option of hospice was brought up to the family and they were given the opportunity to discuss among themselves what they believed was best for the patient. It became difficult and tense, though, when we realized there differing views among the family members on what to do for the patient. The daughters believed that hospice was an appropriate course, whereas the wife and son wanted the patient to keep fighting. They latched on to the notion that antibiotics could fix all.
During this conversation, I noticed that the wife would periodically doze off as we were talking. She appeared to slump over in her chair at strange moments, only to suddenly spring back up minutes later. When she spoke, her speech was a bit slurred and would often meander to irrelevant topics. Prior to our meeting, the son had been visiting with the patient, but mostly he spent his time sleeping on the recliner situated in the corner of the room. He also appeared rather flushed, but I didn’t think anything of it.
When the meeting concluded and the family got up to leave, one of the daughters gestured to me and pulled me aside. It seemed that she wanted to tell me something in secret.
“Hey, just to let you know,” she began, “I think my mom may have been a little high. She’s had many surgeries in the past and has been self medicating” she said as the other daughter gave me a knowing look and walked the mom out. She then added, “Also, I think my brother has been drinking because his face is really red and he probably shouldn’t drive home.” (Just as a side note, the team had told me previously that they were told the son was an alcoholic who was not very helpful when not sober, so I already was aware that the family was dealing with health challenges and stressors in more ways than one).
“Oh, really? Thanks for telling me” is all I could think of in response. What was I to do with that information now? While I was glad that the daughter felt comfortable enough to confide in me, I did not really know what I was supposed to do. What was my role in this situation?
Currently, the son had not left yet and was sleeping at the bedside. Phew, I thought. When he woke up and started packing up his things, he looked alright and awake and alert, but I felt obligated to convince him to stay. I tried using his dad as a bargaining device. “I think your dad would appreciate you being here. You could provide him moral support,” I said maybe a little too cheerfully. I didn’t want to let him know that his sisters suspected he had been drinking. As the son thought about whether to stay, I went to the charge nurse to see if she had any recommendations. But midway through our conversation, the son came up to me and with a quick fist-pump goodbye, said that he was going to leave. And just like that, he was gone.
I remember wrestling internally about what I should have or could have done differently that shift. On one hand, I felt I was entrusted with this information by the daughter so I could look out for her brother’s safety. Patient and family-centered care is key, after all. However, after reflecting on this experience, I had to remind myself that the patient was my primary responsibility and ultimately it was the son’s choice if he wanted to go. While we certainly look out for their families too, they are not the ones here for treatment. As nurses, we tend to be problem solvers and fixers. We care (maybe a little too much, sometimes!) about our patients and their families, but there are limits on what we can do.
While I may not have been able to help my patient’s family directly in that instance, I think that experience has taught me lessons and insights that I’ve carried on to future patient experiences. I’ve seen the difference that having a supportive family can have on a patient’s outlook on their condition and life in general. I’ve seen how one’s coping strategies, good or bad, can drastically change the course of their health.
And most of all, I was reminded of the impact that a patient’s illness can have on their families and caregivers and that those same families and caregivers often are dealing with many life stressors and challenges of their own.