Delirium and Capacity in Cancer: Dr. Yesne Alici on Bioethics and Clinical Care

In oncology nursing, evaluating cognitive changes and safeguarding patient autonomy present complex clinical and ethical challenges at the bedside. Yesne Alici, MD, Vice Chair of Clinical Operations in the Department of Psychiatry and Behavioral Sciences and Director of the Biobehavioral Health Clinic at Memorial Sloan Kettering Cancer Center, specializes in psycho-oncology and geriatric psychiatry.

In this Q&A with Oncology Nursing News, Alici discusses the crucial distinctions between decision-making capacity and legal competence, highlighting common ethical dilemmas nurses encounter during inpatient care. She outlines practical strategies for differentiating acute delirium from depression and cancer-related cognitive impairment, emphasizing the vital role of continuous delirium screening and family-reported observations.

Alici details how bedside nurses can advocate for patient autonomy during fluctuating mental states, navigate relational autonomy within complex family dynamics, and collaborate with multidisciplinary bioethics ambassadors to proactively address complex ethical concerns before reaching a critical patient crisis point

Where do you see oncology nurses facing the greatest ethical dilemmas when assessing a patient's capacity?

That's a great question. Our nurses are at the bedside. They're the closest healthcare professionals to the patient during inpatient and outpatient care. And one of the difficulties is the capacity assessments are typically completed by either physicians or sometimes nurse practitioners, physicians assistants, based on the state you live in. The most important thing to highlight here is there are times when patients would refuse treatment or they would agree to the treatment but then tell the nurse about how much they don't want to do the treatment but they're doing it just because their family members want it. That's one of the major ethical dilemmas because in that situation, our nurses know that the patient has the capacity but then patient is not able to exert their autonomy and that raises a lot of ethics consults.

Another way of looking at this would be if the patient seems to be lacking capacity. If the patient is not able to demonstrate capacity, let's say the patient is confused, agitated, delirious and as a result of that they're refusing their IV line for antibiotics, that could serve as a great source of distress for nursing. The best thing to do is to make sure that the whole team is aware of what's going on and just to make sure that you're advocating for the patient as our nurses always do.

Differentiating between cancer-related cognitive impairment, depression and hyperactive or hypoactive delirium can be challenging. What key behavioral indicators should nurses look for at the bedside?

It's a very important question to highlight for our nurses, especially in the inpatient setting. Delirium, the acute onset confusional state that happens as a result of medications or medical problems, is the most common neuropsychiatric disturbance that cancer patients have. So that being the case, a lot of the times our nurses will be the first ones to recognize delirium in hospitalized cancer patients and delirium may present in a number of different ways. It's highly important that there's some form of delirium screening tool that's being used by nursing. In our hospital, we use the confusion assessment method. And in a recent study we did, we found that adding the single question on delirium to a family member was even better than using the confusion assessment method tool alone.

The most important thing about delirium is it fluctuates in the course of the day. It's acute onset. It’s also important to highlight that patients with delirium may present with hyperactivity or hypoactivity, so, it could be a patient who is very agitated or it could be a patient who is looking withdrawn, not talking, looking almost as if they're depressed. The main thing is the acute onset fluctuations, the attentional impairment, and also other cognitive changes that may accompany.

The other thing that's important to highlight between hypoactive and hyperactive delirium is both subtypes of delirium patients may experience perceptual disturbances like hallucinations or thought disturbances, like delusions. So the fact that a patient with hypoactive delirium looks quiet should not lead us into thinking that we don't have to intervene. We have to intervene, and using the assessment tools will be very helpful. A lot of the times, the nurses make sure that they assess orientation and there are about 25% of delirium patients who will be fully oriented but would still be delirious. So, it's important to assess beyond the orientation. It's important to assess attentional impairment by use of a number of different tools, which our nurses know how to do really well.

Depression is a tricky one because depression can present in a number of different ways. In the inpatient setting, hypoactive delirium is typically confused with depression because the patient looks withdrawn. Remember in the delirium you also have cognitive disturbances, the acute onset changes, fluctuations and the attentional impairment. If we make the comparison with the cancer-related cognitive impairment and delirium, the main distinction is delirium is acute onset. A lot of patients with cancer, after they receive cancer treatments or as a result of their cancers, will experience cognitive changes and those cognitive changes are typically chronic, subacute. They're not acute onset. When it's acute onset, delirium should be the first thing that's thought of.

I'd also like to highlight the fact that a lot of the times we may call cancer-related cognitive impairment “chemo brain.” That's a misnomer. Any form of cancer treatment can lead to cognitive impairment and that's also important to highlight.

When a patient's cognitive capacity fluctuates, informed consent and goal-of-care conversations become very complex. What role should the nursing team play in safeguarding patient autonomy while ensuring ethical decisions?

That's a great point. Thinking about our nurses as the first line staff, the staff who know the patient best, hospitalized patients, outpatients, it's really important that the nurses feel empowered to advocate for the patients when they see that patient is fluctuating and there are times they express themselves. It's not uncommon that we get called for an ethics consultation on patients who would say something to the nurse in a clear moment that they would like to withdraw their care. They no longer want to be intubated. And then at a moment of fluctuation and confusion that may not necessarily get seen by the other members of the healthcare team or the family, it's really important that the nurse highlights what they've heard from the patient and they continue to advocate for the patient. They should be empowered, and one of the things we've done in our institution was making sure that our ethics consultants not just address crisis situations but they also proactively go to the floors and speak with our nurses and educate them on all these things, that they can be advocates for patients with fluctuating mental states.

Do you have any advice for nurses when it comes to interacting with family members, loved ones, and caregivers of patients who are clearly experiencing cognitive impairment or mental decline?

That's a great question. A lot of the times our nurses are the first contact of patients. And with that being the case, when family members or other care partners are in the room, it's important for the nurses to provide the education to the family members about what's going on with the patient and why the cognitive changes may be happening, but also to make sure that the family members are getting the support that they need. Many of the hospitals, the social work referrals mainly come from nursing because nursing staff are the ones who do see if there's any difficult family dynamics or the family needs the support and then they call in a social work consult.

The other thing I want to highlight here is the cognitive changes may require different kinds of communication needs for the patient and nursing definitely has the skill set to be able to educate the families in a way that they're able to continue to communicate with the patients despite the cognitive changes.

In geriatric psycho-oncology family dynamics often complicate decision making. How can bedside nurses navigate situations where the family wishes conflict with the patients’ demonstrated capacity?

This is a common ethical concept that comes up at the bedside, especially with geriatric patients and what appears to us as a conflict between the patient and the family may be due to unaddressed education needs that the family has or the patient has. Unless we see anything to the contrary, bear in mind families care for patients. Families are there for patients. I think that's an important thing to remember. But if we see that there is some kind of conflict with what the patient is saying and what the family is pressuring them to do, especially in geriatric psycho-oncology, that happens frequently, it falls on us to make sure that we find a way to have both parties listen to each other and also the other providers and nursing provide the education to the family and the patient about what's going on and then to escalate it to the ethics consultation team if needed, if there's any need for mediation.

The other thing I want to highlight here is what we refer to as relational autonomy. Patient autonomy is highly important. But sometimes, especially this happens in the geriatric patient groups, patients make decisions that doesn't only align with their own values, but also align with their family's values and the shared decision making, the relational autonomy takes the front stage.

There are also situations if the patient has cognitive issues, cognitive impairment, then the family could be there to speak for them, knowing their values and their goals, understandably much better than we healthcare providers may. So the relational autonomy in that context is how the family members shore up patient autonomy by making sure that the patient’s voice is heard to the extent that is possible but their wishes and values are communicated to the team members if the patient is not able to communicate them currently. This happens a lot in the geriatric patient population because there's a lot of cognitive impairment, there's a lot of frailty, there's a lot of sensory changes, so I would see the families as a part of the team that surrounds the patient and supports the patient, and we find a way to work with the families and patients together.

Delirium screening is critical in both inpatient and outpatient settings. What are the most common pitfalls that nurses encounter when administering screening tools and how can training be improved?

In our hospital, we have been using the confusion assessment method, which is a screening tool that's used for delirium screening. The screening tools have their own challenges, limitations, one of the things being that if you don't feel confident in using the screening tool, you may end up with false positive or false negative results, you may misdiagnose or underdiagnose something like delirium. What's really important is to have a continuing education model wherein you train every new nurse but you also do audits in the course of the year to make sure that the nursing continues to be able to use the tool.

We built a buddy system in our critical care unit to make sure that our nurses were constantly being offered educational tools. Questions were answered as it related to a delirium screening. The other important part of this is there has to be some form of escalation pathway. Delirium screening is done because we want to know when patients are delirious. So if the screening tool results are not checked by the provider team, the delirium screening tools if they're not used to improve patient care by way of diagnosing delirium, assessing delirium, managing delirium, then the value of it will be diminished. So it's highly important to have delirium champions on each one of the floors who are typically nurses so that uh they can continue to provide education around screening tools and inform everyone on the team about delirium escalation pathways.

It's important to screen for and it's important to diagnose when it is there. In the outpatient setting, it's less common, but it can still happen. And it's essential for when nurses see that a delirium screen is positive that it's communicated to a licensed independent professional to do further assessment and management.

How can multi-disciplinary teams build a more robust protocol to address bioethical concerns before a patient reaches a crisis point regarding their capacity to treatment?

A good bioethics council team goes a long way. Especially in the cancer settings, it's essential that the ethics team has a robust presence and it's exactly for the reason that we want to be there when there's a crisis situation but we also want to be there to prevent the crisis from happening.

One of the things that was done in our institution is an educational program called the bioethics ambassadors program. And what that program does is basically every year a certain number of individuals across different discipline services are brought together for a multidisciplinary ethics education and then after their education is completed they then become bioethics ambassadors across the institution. So that really helps build a culture of people knowing when ethical dilemmas arise and knowing when to escalate them to the ethics consultation team. We've also done ethics rounds models in our critical care unit which is just another way of making sure that you're catching things in a timely manner. It is essential to be proactive to identify ethical dilemmas timely or to prevent them from happening when we're on the floors.