Personalized Sedation Goals May Help Standardize End-of-Life Care for Patients with Agitated Delirium

David Hui, MD, MSc, from The University of Texas MD Anderson Cancer Center, discusses the impacts of personal sedation goals for caregivers of patients with cancer experiencing end-of-life agitated delirium.

Because there is so much variability in personalized sedation goals (PSG) for patients with agitated delirium receiving end-of-life care, it is important to standardize goals for caregivers and health care providers, according to David Hui, MD, MSc.

In a recent study published in Cancer, investigators found that, although they experienced greater delirium-related distress (= .0006), caregivers had a greater tendency to choose lighter sedation options than nurses (OR, 4.8; = .01) for patients with cancer undergoing end-of-life care. Nurses tended to prefer a deeper level of sedation (< .0001), particularly for patients no longer able to communicate (OR, 3.1-4.4; < .0001) and who had a shorter life expectancy (OR, 1.7; = .002).

Hui, associate professor in the Department of Palliative Care Habilitation and Integrated Medicine at The University of Texas MD Anderson Cancer Center in Houston, spoke with Oncology Nursing News® about the ramifications of the study findings and what future research for PSGs may encompass.

Oncology Nursing News: Could you provide some context for the importance of this research and how the study came to be designed?

Hui: CLL patients at the end of life [often have] agitated delirium. In clinical practice, we often have to find that very careful balance between providing sedation for comfort versus taking away a patient's ability to communicate with their family. So, this is a very fundamental issue that some clinicians [and] caregivers struggle with every day.

When we look at the literature, there aren't too many studies trying to navigate how clinicians navigate this, and what do patients or their caregivers really prefer? We decided to embed some of these questions regarding communication and sedation, as a baseline measure in this study, to help us learn a little bit more about some of what is the appropriate level of sedation for those patients.

Could you take a moment to describe a PSG and the value they can provide to a palliative care team?

PSG is a personalized sedation goal [and] essentially is mirrored after the RASS score rating, which is the Richmond Agitation Stations Scale. And this is a validated scale that goes from +4 to -5. Zero means that patients are not agitated, but not sedated either. And any minus scores (-1,-2,-3,-4-5), get some progressively more sedated, and then any plus score is restless or agitated.

The personalized sedation goal, rather than giving caregivers a number, we kind of provide a description for what that number means. So -1 is very light kind of sedation, patients may have some interaction, but there may also be more often times of breakthrough restlessness. And deeper sedation, as you go to -5, that means patients will be deeply sedated, they'll be sleeping pretty much all the time, and it's unlikely that they would be very restless at all, but then they won't be able to communicate either. So, we're giving them that description and the caregivers tend to pick the level of sedation, that some would be most consistent with what they feel is appropriate for the patient. Because remember, the patients are all delirious, so we can’t ask the patient themselves. [Instead], we have to ask the caregivers who are often by the bedside and very much engaged in the decision-making process.

Regarding their personalization goal in terms of this application, I think it's still very early. But with further testing, it could potentially have some applications in it in the research setting, clearly for setting goals for clinical trials, perhaps as a new outcome, but also in everyday practice there may be a role as well. In a way, I think clinicians are already doing some of it. We are talking and asking caregivers, ‘Hey, is it too much? What do you think?’ And they will tell us, but having a tool like this may allow us to standardize the way we pose the choices for the caregivers.

The findings showed that caregivers were more likely than nurses to say that the patient could speak coherently, but they were also more likely to have spent time with the patient. What insight does this data provide regarding the caregiver, nurse, and patient dynamic in the situation?

There are a few reasons that may explain the difference in observation between the nurse and the caregiver. Clearly the caregiver is a lot more often at the bedside, so maybe they did notice the patient can communicate with them a bit more. Alternatively, maybe the families just know the patient a lot better than anyone. So maybe they can read into some subtle signs of communication, whereas to nurse or stranger, it may be a little bit different. And maybe there's also some desire to communicate.

And at the end of the day, I think we have to rely on caregivers’ input because they are the ones who are suffering from this whole process as well, and making the decisions, and we are here to understand their perspective. For health care professionals, whether it's doctors or nurses, you need to understand the caregivers perception, and that will allow us to also maybe tailor our recommendations for them better as well. If the caregiver says, ‘Hey, I feel that my loved one is still communicating a lot with me, and I absolutely don't want to sedate my loved one too much’ that will make a lot of sense. Some other times our families say, ‘Well, I absolutely don't feel any signal and all I get is just restlessness,’ [and] the recommendation would be less, just merely keeping more rested.

Caregivers were more likely to prefer a lighter sedation than the nurses, despite their previous responses to the six vignettes. What did these findings suggest about the caregiver perception of sedation for their loved ones?

We know from the vignettes that more distress is usually associated with the desire for deeper sedation. So that makes a lot of sense, right? If [a] patient has been up and about and yelling and screaming, they generally prefer more sedation. But the very interesting observation in this study is [that], despite caregivers feeling more distress from the agitation than the nurses, they still prefer lighter sedation. I think that's exactly going back to the points that we were just talking about, which is that communication piece may be one of the factors. We do feel the ability to still communicate is rated quite high by caregivers. And so if they feel that it's okay to sacrifice a little bit of that sedation, and as long as they can still communicate, but that's again, important to find that balance and really monitor the preference over time, because the caregivers may or may not have different perceptions as the patient's condition evolves as well. So it's not a static kind of outcome. Their preferences may also change, [and] the patient's ability to communicate may also change. It’s important to have a continuous dialogue, monitor, titrate in, and ask again.

In your opinion, what are some of the next research steps regarding personal sedation goals for patients with cancer-related delirium?

I think this is just the first small step. This is clearly a preliminary study with a small sample size and [conducted at a] single center. And I think we certainly need to do more research to other settings and other patient populations, and other institutions to understand if the findings still hold. If they continue to show some validity, then I think that's where this personalized sedation goal may be a useful outcome in clinical trials and may also one day be translated to a tool in clinical practice.

Despite the caregiver’s desire for only moderate to light sedation, our data show that we [are] not actually achieving the [preferred] level of sedation, a lot of the times, even with the relatively high doses of neuroleptics. So, we are under sedating these patients.I think this is an important observation. As clinicians, we often actually worry that we [are] overly sedating patients. And it seems that, based on the data that is collected, we are not able to hit the targets adequately, and maybe there is some unnecessary restlessness that could be managed a little bit better. I think we certainly need better research and more new agents to see how we can help control this condition a little bit more, given that it is one of the most distressing manifestations in the last days of life.

The other take home message would be that doing this kind of research is very challenging.

Imagine the patients are in the last days of life, and we are almost surprised, but certainly very grateful for the caregivers to be willing to participate in this study, and to provide us with some of this very relevant information that could potentially inform us how to provide better care.