Ethical Challenges in the Delivery of Family-Centered Nursing Care

Practices That Support Family Advocacy and Family-Centered Care

Practices that supported family advocacy and honored families’ needs included nurses offering guidance about the patient’s overall condition and possible clinical scenarios. Especially for older adult patients, nurses had discussions with families about hospice being a potential future option and offered clear explanations about life-sustaining treatments, such as performing cardiopulmonary resuscitation in the event of acute cardiac arrest. At the end of life, nurses supported families’ coping by promoting peaceful death experiences and referring them to appropriate resources, such as chaplains or spiritual services. In addition, one nurse in the post anesthesia care unit shared an example of navigating inter-unit conflicts and administrative pressure to keep a newly transferred patient who was hemodynamically unstable and likely to code in her unit, so the family could see the patient one last time:

I did have a choice to make the family feel cared [for] and supported. And that man literally didn’t speak while he was there. He would open his eyes, close his eyes, but when his family got there he said goodbye to them and he was speaking to them and he died in my unit, and that was . . . nobody would’ve done the same thing is sort of what I kept hearing from my manager, and I’m like, but I feel like I did the right thing and I would do that again tomorrow, whether you were here or not, that’s what I would wanna do. (CA5)

Another participant with pediatric expertise mentioned that she tried to advocate for the families’ wishes, recognizing that families must live with their decisions for the rest of their lives. However, she also emphasized the importance of maintaining emotional boundaries when she did not agree with the family’s choices, trying not to become too personally involved.

Particularly during the COVID-19 pandemic, nurses described the need to be creative in order to include families by creating an environment that allows for both physical and virtual presence. Examples included devising protocols that allowed intubated patients to be transferred home and be extubated there so they could die peacefully with their families, or bending visitor policies to allow patients who have difficulty following directions to have their family members present. Nurses also devised ways to communicate with families, like using Zoom calls to speak with families and communicate the condition of the patient: “Well, there were no family members; it was a little difficult, okay. We ended up Zooming people in, trying to talk to them, so we still tried to keep the communication [going]” (PA10).

Moral Uncertainty

While nurses wanted to involve families in patient care, some described experiencing internal struggles related to crossing interdisciplinary boundaries and time constraints, and being blamed for exceeding their authority and not knowing the best course of action. For instance, one oncology nurse described being uncertain about her role in initiating conversations about palliative care. The nurse commented that rotating medical teams may not prioritize such conversations, which left nurses to engage with families:

I’m like I’m not . . . how in-depth am I allowed to go; like I think that after ten years I have adequate knowledge and experience and I can give examples of what I’ve seen but am I gonna get in trouble, you know. (PA22)

A participant working in the intensive care unit (ICU) even described being blamed by physician colleagues for reaching out to a family and a physician during the night shift. A young ICU patient had been placed on hospice by her family, but unexpectedly woke up during the nurse’s night shift. When the nurse explained the hospice plan, the patient asked questions about her care, which raised concerns about whether hospice aligned with the patient’s wishes. The nurse called the physician and the family, and after discussion, the comfort care order was reversed. The following morning, some hospitalists were upset, which led the nurse to feel as if she had crossed professional boundaries while trying to advocate for both the patient and the family:

I could just hear the physicians saying like who would let this family make a decision overnight like that, like why wouldn’t they wait until morning to switch off of hospice. So, I felt like I had done the wrong thing by talking to the family and kind of having the doctor maybe switch them off of hospice if that’s not what they wanted. (PA17)

Practices That Exclude or Isolate Families

Nurses discussed incidents where the families were not given enough guidance and information about the patient’s condition, prognosis, and potential care options, ultimately resulting in families not being involved in care decisions. One nurse described that it is unfair to ask family members about care preferences at the last minute without preparing them in advance, as people are often nervous to have those conversations, and by the time they respond, it may be too late. Some nurses discussed being frustrated with doctors not being transparent about the patient’s prognosis, seemingly hiding concerns. For instance, one nurse working in the operating room noted:

I was present for the surgeon explaining to the family the surgical procedure because the patient was intubated. So, it was the family [that was] giving consent. But he made it sound rosy and didn’t give both sides, you know. (MD1)

During COVID, nurses described experiencing significant moral distress due to hospital policies and practices that resulted in families’ physical absence and communication gaps. Visitor policies were often brought up as examples, which created challenges, particularly at the end of life. One nurse referenced other institutions connecting dying patients with their families through iPads, describing these stories as harrowing. Not being able to involve families at the end of life made nurses feel as if patients were dying alone. One ICU manager reflected, “They were dying alone or . . . they weren’t alone, they had us, but it’s not the same, it wasn’t the people that loved them. And we did our very best to substitute, but it was awful” (MA4). Another nurse described a personal experience involving the death of a brother-in-law from COVID, commenting on the hospital’s poor communication with families:

They probably did all that they could, but what they didn’t do is that they didn’t take care of the needs of the family and the people who were involved in that and, you know, that makes me angry because that’s part of our job. (MD8)

However, the nurse acknowledged that the care team must have had little time to engage with families due to their heavy workload.

When patients did not have family members present, as one nurse pointed out, they were more vulnerable to the care team’s unilateral decision-making and lack of advocacy. In some cases, there was no health care proxy to represent the patient, which particularly created challenges at the end of life. Examples included patients who remained full code because no family visited to discuss do-not-resuscitate (DNR) orders, or there was no one available to make decisions regarding funeral arrangements. For instance, one nurse working in the emergency department described a situation in which a middle-aged man who was found alone had a cardiac arrest, and the care team performed multiple resuscitation attempts. They ultimately deemed that continued intervention was unlikely to result in a meaningful quality of life, but the patient had no identified health care proxy, only minor children who did not have legal decision-making authority. The care team even involved the police to search his home for any documentation or contacts, but none were found. Such cases, where the care team had to continue full care because there was no one to make end-of-life decisions, created significant moral distress for the nurses:

The care seems futile, but they don’t have a family member that’s allowed to make a decision or they have a guardian that doesn’t have the authority to make a decision, so we just keep continuing on. Sometimes I feel like sometimes we’re just torturing the patient, knowing that they’re still going to die. (MA4)

Disagreement Among Family Members About Care

Nurses discussed situations in which patients lacked decision-making capacity and required a surrogate, but family members had conflicting views, which placed the care team in a difficult position. These challenges persisted even when documents such as advance directives designated a specific family member as the patient’s care proxy. One ICU nurse described a challenging case of a woman in her forties with advanced cancer. Despite having tried every treatment and clinical trial, the patient was in severe pain and rapidly deteriorating. She had made her husband promise to “keep fighting,” and despite her worsening condition, he initially resisted DNR, creating a conflict with her older daughter: “The older daughter had wanted her to be a DNR the whole time, but because the husband had power, she couldn’t do anything about it” (CA11). As the patient was verbally expressing great pain, the nurse had an honest and emotional conversation with the husband, and he ultimately consented to DNR. In other cases, some family members attempted to invoke their own authority, rather than following the proxy’s responsibility to carry out the patient’s decisions. To resolve such family conflicts, interdisciplinary team members such as the ethics committee or social workers were often involved.

Disagreement Between Patients and Families About Care

There were also cases in which the care preferences differed between the patient and family. When the family was in conflict with the patient, nurses felt their primary responsibility lay with the patient and engaged in conversations with families to help them understand the patient’s wishes:

And as a nurse you wanna do what the patient wants because I’m a high advocate for my patients versus anybody else, and so I do my part of talking to the family and trying to counsel them. So not only are you a nurse, you become a counselor for the family in trying to make them understand what’s going on with their bodies and their minds, and are you doing this for yourself or are you doing it for the person who is . . . your loved one. (CA12)

An ICU nurse shared a case involving a difficult family of a patient with amyotrophic lateral sclerosis (ALS). Although the patient informed the care team that he wanted medication for pain and anxiety, his family was opposed to such medications because they made him too drowsy to interact with them. Nurses got into arguments with the family as they tried to explain the need for pain medications and the importance of managing his symptoms.

There were also incidents where families tried to overturn patients’ living wills, so nurses had to intervene:

. . . some of them will understand and they will say okay, but some of them will fight, so I will have to go to . . . my . . . you know, my next . . . my next manager or supervisor, and then until we get into the solution sometimes we have to even go to court for a doctor and a judge to decide what was best for the patient. But it’s a tough place to be in because you wanna support the patient, but at the same time you wanna understand the family member because, you know, it’s all one; the family is part of the patient. It’s just like . . . it’s very tough. (PA20)

Sometimes, these conversations could last for days, which was exhausting and hard for the nurses as well as everyone else involved.