 revealed that during end-of-life care, caregivers were more likely to prefer a lighter sedation than nurses for their loved ones, despite previous responses to 6 different vignettes.

In an interview with Oncology Nursing News®, David Hui, MD, MSc, explained how distress is typically connected with a desire for deeper sedation, but in the case of caring for a patient with cancer experiencing agitated delirium, caregivers may often value communication more than they originally realized.

“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,” he said. “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.”

“…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,” he added. “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.”

Hui D, De La Rosa A, Urbauer D, Nguyen T, Bruera E. Personalized sedation goal for agitated delirium in p0atients with cancer: balancing comfort and communication. 

. 2021;10.1002/cncr.33876. doi:10.1002/cncr.33876

Videos

David Hui, MD, MSc, from The University of Texas MD Anderson Cancer Center, discusses how caregivers may prioritize communication when making end-of-life sedation decisions for loved ones with agitated delirium.

Ability to Communicate Is a Key Factor in Personalized Sedation Goals

Patients with cancer experienced a significant improvement in emotional function of health-related quality of life (HRQOL) following the implementation of the Humanization in Cancer Care (HuCare) Quality Improvement Strategy, according to a study published in 

These results highlight an unmet need for psychosocial care introductions strategies, wrote the study authors.

Specifically, the HuCare Quality Improvement Strategy (HQIS) resulted in a significant improvement in patient emotional function (odds ratio [OR], 1.13; 95% CI, 1.04-1.22; 

 = .008), but not in social function (OR, 0.99; 95% CI, 0.89-1.09; 

 = .80). Notably, emotional function was still improved at 12 months (OR, 1.05; 95% CI, 1.00-1.10; 

“To our knowledge, this randomized clinical trial is the first report that a quality improvement strategy aimed at integrating evidence-based psychosocial care interventions into practice significantly improved [emotional function] of HRQOL in patients during cancer treatment,” wrote the study authors. “The effect persisted at 12 months, suggesting that once the HQIS strategy is learned and implemented, a lasting change occurs in clinical staff behavior and in ward organization.”

The HuCare2 Stepped-Wedge Cluster Randomized Trial (

) was a multicenter, incomplete, stepped-wedge cluster, randomized clinical trial which evaluated the efficacy of the HQIS in comparison with standard care. The trial was deemed incomplete because data was not initially collected during implementation. Throughout the trial, the intervention strategy was executed in 3 clusters across 5 centers with 4-month periods in between each assessment. The study period occurred from May 30, 2016, to August 28, 2019.

The study enrolled a total of 762 adult patients (women, 62.3%) in the outpatient setting with a newly diagnosed cancer of any type or stage and who were beginning medical treatment for their disease. The mean age was 61.4 years. The most common cancer type was genitourinary cancer (35.7%). Metastases were present in 25.5% of patients and a total of 86.6% of patients were actively receiving chemotherapy during the study period.

Components of the HQIS included clinician communication training, on-site visits for context analysis and problem-solving, and implementation of 6 evidence-based recommendations. The strategy occurred over 16 weeks and included 3 separate phases. The first phase taught medical and nursing staff communication skills in accordance with literature-reported indications. The second phase involved on-site visits from the improvement team (sociologist, psychologist, and research nurse). The third phase implemented 5 psychosocial interventions for patients, including an assignment of a specialist nurse, screening for psychological distress and social needs, activation of appropriate services, and more.

The study’s key outcome was the change in emotional or social function on the individual level. The HRQOL functions were first measured at baseline, again at a 3-month follow-up, and then during the postintervention epoch compared with control periods. Secondary outcome included a long-term assessment of the intervention at 12 months.

“These positive results support the need for strategies to introduce psychosocial care capable of addressing the multiple obstacles and barriers that may hinder implementation,” the study authors concluded. “In particular, our study demonstrates the effectiveness of a system-based approach, which implies organizational change requiring collaboration and commitment across hospital departments, disciplines, and individual clinicians.”

The study authors acknowledged that although the difference in the mean change in HRQOL between the 2 groups was statistically significant, it was also trivial. Further investigation may be needed to determine why the difference was so small. One possibility is that the design of randomized clinical trials does not permit the adjustments needed by different cancer centers. Another possibility that the study authors proposed is that the 2-year period did not allow adequate time to properly observe all 3 clusters, and finally, that 4-months may not be enough time for the implementation of such an intervention to affect significant change within a ward.

Caminiti C, Annunziata MA, Verusio C, et al. Effectiveness of a psychosocial care quality improvement strategy to address quality of life in patients with cancer. 

 2021;4(10):e2128667. doi:10.1001/jamanetworkopen.2021.28667

Articles

The implementation of the HuCare Quality Improvement Strategy supported superior emotional function for patients newly diagnosed with cancer. 

Patients Experience Improved Emotional Function With Novel Intervention 

The driving force behind oncologist and hematologist burnout during the COVID-19 pandemic was the loss of in-person patient interaction, revealed data from a study presented at the 2021 ASCO Quality Care Symposium.

 Although income-related concerns also contributed to a decrease in professional satisfaction, this factor was ranked second in importance.

Results showed that among 259 community oncologists and hematologists surveyed, 46% attributed the loss of in-person patient interaction as factor contributing to their feelings of burnout compared with 42% citing practice financial loss. Moreover, 50% of those surveyed reported that they experienced more burnout at work since the COVID-19 pandemic began (36% agreed, 14% strongly agreed).

“Given the high baseline rate of burnout among these physicians, it remains critical to prevent, mitigate, and control additional risks [created by] pandemic-related factors,” lead study author Ajeet Gajra, MD, FACP, a clinical professor of medicine at Upstate Medical University, said in a presentation of the data.

About one-third (31%) of respondents neither agreed nor disagreed that they experienced more burnout at work since the COVID-19. Sixteen percent disagreed with the question, and 3% strongly disagreed.

The COVID-19 pandemic has had a significant impact on healthcare workers globally. Investigators have observed higher than normal rates of burnout have been reported, especially among frontline workers. Organizations such as ASCO have attempted to assess the impact of the pandemic on oncologists in the United States, but further research is needed to understand the full impact community oncologists and hematologists, as these groups experiences several unique challenges.

In this study, investigators sought to assess the impact of the pandemic among community oncologists and hematologists in the United States prior to widespread distribution of COVID-19 vaccines.

Investigators conducted a web-based survey from October 2020 to December 2020 that included questions regarding the impact of the pandemic on both the personal and professional lives of community oncologists and hematologists. Demographic and practice setting information were collected for participants, and all participants were compensated for completing the survey. Investigators then then analyzed the responses using descriptive statistics.

Respondents had a median of 18 (range, 1-42) years in practice. Most worked in academic settings. Practice setting for study participants were as follows:

Academic center or affiliated teaching hospital:

Community practice, owned by large entity:

Large, privately owned, community practice (with more than 10 physicians): 

Small, privately owned, community practice (2-5 physicians): 

Medium-sized, privately owned, community practice (6-10 physicians):

Thirty-six percent of participants were geographically located in the South, 22% in the West, 22% in the Midwest, and 20% in the Northeast. Furthermore, 51% of participants reported that their perception of the trend in COVID-19 cases in their local area was stable, 29% said it was increasing, and 20% reported that it was decreasing.

Additional data showed that 49% of participants reported that the pandemic had a moderate impact on their professional life, 33% reported a slight impact, 11% reported a severe impact, and 7% reported no impact at all. In term of their personal lives, 48% reported a moderate impact, 28% reported a slight impact, 17% reported a severe impact, and 7% reported no impact at all.

Factors that contributed to negative impacts on professional lives included, concerns over patients transmitting COVID-19 to themselves or their staff (52%), difficulty providing care to patients (45%), loss of income (41%), loss of patient volume (37%), inability to attend scientific meetings in person (35%), added expense to make the practice safe (32%), fear of litigation due to telemedicine visits and potential missed findings (8%), and other (2%).

Factors that contributed to negative impacts on personal lives included, concerns about safety of themselves and their families (84%), a sense of anxiety (50%), loss of family income (24%), a sense of depression or doom (22%), space limitations due to more family members working from home (11%), friction with family due to working from home (10%), and other (5%).

Additional factors that contributed to feelings of burnout among participants included reduced patient volume (35%), access to necessary supplies and/or medicine (29%), personal financial loss (27%), layoffs of other staff members (23%), increased patient volume (12%), and other (5%).

Finally, factors that impacted income among participants included the change from office-based to telemedicine visits (38%), pay cuts from their hospital or practice (33%), cancellation of elective services/procedures (31%), reassignment to other departments in need (6%), and other (6%). Moreover, 22% of participants reported that their income had not been impacted by the COVID-19 pandemic.

Gajra A, Jeune-Smith Y, Fortier S, et al. Impact of COVID-19 pandemic on oncologists’ professional and personal lives: A pre-vaccine study. 

. 2021;39(28): 45-45. doi:10.1200/JCO.2020.39.28_suppl.45

This article was originally published on OncLive as “Loss of In-Person Patient Interaction is Key Factor in Pandemic-Related Burnout Among Oncologists”

Data presented at the 2021 ASCO Quality Care Symposium demonstrated that in-person interactions had a bigger impact of professional satisfaction than financial stability.

Oncologists Attribute Pandemic-Related Burnout to Loss of In-Person Patient Interactions

Mindfulness has been studied and proven to have a number of benefits on our physical and mental health. Mindfulness is the act of being present and aware of our surroundings while having a neutral response.

 Practicing mindfulness can offer the average person relief from a number of different life stressors. It can make a world of difference for caregivers of patients with cancer who are balancing their personal responsibilities with their loved one’s needs often with minimal support, which leads to caregiver stress and burnout.

Caregivers are often our unsung heroes of the cancer experience. Although not going through cancer treatment itself, caregivers walk alongside their loved one during a journey that can last anywhere between a few months to a lifetime. Studies show people caring for a loved one with cancer have a shorter yet more intense caregiving experience compared to people caring for a loved one with a different type of illness.

Within this intense experience, cancer caregivers can often find themselves physically and emotionally exhausted. Their lives do not stop just because they have become a caregiver, and so they need to adapt and find ways to navigate an even greater amount of responsibilities. Caregivers help their loved ones with activities of daily living, learn new medical tasks, and often coordinate services for their loved ones that do not leave much time left over to care for themselves.

This lack of time can lead to poor physical health for caregivers, and changes in sleeping or eating patterns, as well as increased feelings of anxiety and depression. Many caregivers do not notice these patterns until they feel completely run down and burnout.

Research has found mindfulness can have a great positive impact in many different areas of our lives. Mindfulness can help decrease feelings associated with burnout, such as anxiety and depression, as well as improving other symptoms such as lack of sleep or gastrointestinal issues.

 These benefits can all lead to a caregiver having a more positive outlook, which, in turn, can lead to better health outcomes for themselves and their loved ones.

Caregivers might share that they do not have the time to practice mindfulness or maybe feel like they don’t know where to start. If your caregivers are not talking about self-care, you may have to be the one to start the conversation. You can remind them that the idea of mindfulness can be intimidating when getting started but it is important to not let it discourage them.

You can start with encouraging your caregivers to set aside dedicated time to practice in a quiet space with no distractions. If it is hard to find time to set aside, that’s okay too, because they can be mindful anywhere. A person can be mindful on a walk home, while eating dinner or listening to music. Take a moment to remind caregivers before they make the decision to begin this practice that the goal is not to keep the mind from wandering, because this isn’t always possible for us as humans.

When they catch their mind wandering, encourage them to acknowledge it and bring focus back to the breath or whatever they chose to focus on.

There are so many different types of meditations we introduce caregivers to help them integrate mindfulness into their daily routines. Progressive muscle relaxation is a type of meditation where a person will focus on each part of their body, starting from their toes and going up to their head. During this exercise, the person will tense one muscle group at a time and then release the tension. Oftentimes, we don’t realize where we are holding tension in our bodies until we make ourselves release it.

When practicing this, one should focus only on one muscle group at a time and move slowly. Caregivers can go from their toes to their head or their head to their toes, as long as they include everything that is in between. They will tense their muscles on the inhale, pause for just a moment and then release the tension on the exhale. We should encourage caregivers to feel free to breathe out audibly, getting rid of anything they do not need.

Whether you practice progressive muscle relaxation, body scans, or journaling, you are living mindfully. We all have the ability to be mindful, we just need to give ourselves the space to practice it. We need to encourage our caregivers to take care of themselves by keeping up with their own physical and mental health to be able to better cope with stress and burnout. Introducing mindfulness is one way to address both.

What is mindfulness. Mindful. July 8, 2020. Accessed November 22, 2021. 

https://www.mindful.org/what-is-mindfulness/

National Alliance for Caregiving, National Cancer Institute and Cancer Support Community. 

Practicing mindfulness to relieve caregiver stress. Visiting Nurse Service of New York. Accessed November 22, 2021. 

https://www.vnsny.org/article/practicing-mindfulness-to-relieve-caregiver-stress/

Stoll, N. Three ways mindfulness can help caregivers

 Caring Across Generations. March 26, 2021. Accessed November 22, 2021. 

https://caringacross.org/blog-mindfulness-helps-caregivers/

Learning to relax. National Cancer Institute. March 23, 2021. Accessed November 22, 2021

https://www.cancer.gov/about-cancer/coping/feelings/relaxation

Within this intense experience, caregivers can often find themselves physically and emotionally exhausted

How Mindfulness Can Help Caregivers Cope with Stress and Burnout

Palliative care does not need to be associated with end-of-life care, explained Joe Contreras, MD, chair of the Institute of Pain and Palliative Medicine, Hackensack Meridian Health. Furthermore, considering palliative care for patients earlier in treatment may help improve overall outcomes.

For National Hospice and Palliative Care Awareness Month, Dr. Contreras spoke to Oncology Nursing News® about some common misconceptions between the 2 types of care and how oncology nurses can more effectively speak with their patients about palliative care.

Oncology Nursing News: November is National Hospice and Palliative Care Month. Why is it necessary to generate more awareness around these systems of supportive care?

 I think the most important thing is the fact that we are misunderstood as a specialty of medicine. Palliative care as a field is very misunderstood. And I think a lot of times [we are] not even looked at as a specialty of medicine. Sometimes [people] feel it's more a setting of medicine near the end of life. It's taken on a life of its own, unfortunately.

Much more tends to be thought of in line to hospice. One of my big goals in life is to dispel those myths to the best of my ability and get people to understand that if they receive palliative care with their specialty physicians, their primary care physician, they actually could have a better outcome in terms of feeling better in terms of functionally and possibly in terms of living longer. That really is what the specialty is all about: making people feel better, making people feel more functional, so that they can be with their loved ones. And therefore, perhaps even do better with their chronic and serious disease. 

Could you differentiate between palliative care and hospice care and explain what separates the two?

Palliative care is a specialty of medicine. It can happen at any time in life if one is diagnosed with serious illness.

What would be some of the reasons why somebody would want to be aligned with palliative care? Because they're having physical symptoms that are dragging them down. Because emotionally, they're not well, perhaps spiritually, they're not well. These are the kinds of things that [may] improve somebody's overall quality of life, and hopefully, help them preserve their functional ability.

So, it's a specialty of medicine, and not a setting. [In comparison], hospice is a setting. Hospice is not a specialty of medicine. It is a setting that is designed to provide people quality of life when they have been diagnosed with a terminal disease.

They can also have chronic disease that has worn them down to the extent that a physician could certify that he or she probably does not think that they have more than 6 months to live. We have a question that we asked in this field, which is the ‘surprise question’ the primary care doctor or specialist could be asked: ‘Would you be surprised if your patient were to pass in the next year?’ And if the answer is no, then that patient could be considered for a hospice admission. They can no longer get aggressive treatments; they can no longer get disease modifying treatments or curative treatments. That is one thing that they have to give up. So, the focus is solely to be at home with the family and to maximize whatever time they have left. Sometimes a physician might certify they have 6 months left to live. They may live for a year. Nobody really knows exactly but if you can have impact on quality of life, then you most likely are likely to do better.

It is a Medicare benefit to be in hospice. And if you do graduate from those 6 months, as I call it, you can be recertified for hospice, but hospice is clearly not a specialty. It is a time frame. And that timeframe is defined by about 6 months before one's death.

How exactly can palliative care improve patient outcomes?

If we are successful with the pain and the nausea, and some of the symptoms that cancer patients can have, and we're successful with helping one emotionally, (because having the diagnosis of cancer is very scary and very traumatic for not only patients but for their families,) then we can get [patients] to feel better. And if we're also able to make them feel better, and they're functionally well, and we get them to do physical therapy, and we pose upon them the importance of being

functionally well, they actually can do better and possibly live longer. 

We have been able to do studies that have focused on whether or not improving quality of life and emotional symptoms and spiritual symptoms could have a benefit in terms of longevity of life. In particular, one of the landmark studies in our field was done several years ago, up at Mass General Hospital in Boston, that looked at 2 groups: 1 group that was receiving normal cancer care, the other group that was receiving normal cancer care plus palliative care.

 It turned out in this study that the group that was assigned to palliative care did have better symptom management scores, did have better emotional scores, and lived three months longer. And that is a very, very powerful thing.

Some patients are under the impression that you can't receive palliative care and chemotherapy at the same time. But in reality, patients can receive palliative care and active treatment simultaneously, correct?

Correct. I can't overemphasize that. Could I just think it's important, it goes with the concept that palliative care is a specialty of medicine.

Palliative care, what makes it unique is it's really focused on the well-being of the person in the setting of serious illness. And we approach it holistically, mind, body, and spirit. So, it's not as simple as thinking, well, what is a nephrologist? Do they treat kidneys, diseases of the kidneys, or a pulmonologist, they treat diseases, the law, we treat the person as a whole, and we're interested in the wholeness being preserved in the setting of serious illness, and those people that do respond then do extremely well. And, and therefore, it's like having any other specialty on board. If you're a [patient with cancer], and you have a nephrologist on board, you may also have a palliative care specialist on board and that's okay, that doesn't stop you from continuing to receive treatment from all three specialists, you have the same rights you have the same insurance benefits, [and] it's billed like any other specialty of medicine.

[This is] very important because there's a big distinction there with hospice. Hospice is for the most part across the board benefit from most dances and certainly Medicare as far as I understand, but they do have to give up life preserving treatments, curable treatments or, or aggressive treatments, they do have to give that up and function really more just on their quality of life.

What other misconceptions might nurses encounter while discussing palliative care with their patients?

Insurance is a big one. Palliative care is covered by insurance as it is just like most specialties. You have to check with your insurance company, but most insurance companies, if not all, pay for palliative care.

And just the whole ‘palliative being an end-of-life sort of concept.’ I could see where that concept comes from, because it is what you observe, for example, if you're in the hospital with a loved one. A lot of times, unfortunately, we're getting referrals very late in the disease trajectory. So I can see how people would be confused [and] think, ‘Oh, well, it seems like palliative care is really associated with those who are dying or not doing well.’ And really, the truth is my own colleagues, my referring colleagues, sometimes feel the same way. That’s why I have spent a lot of time trying to educate my colleagues to be comfortable having the discussion with their patients that if they're noticing that their patients are symptomatic, if they're noticing that there are emotional concerns of distress, that would be a time to start thinking about palliative care if your patient is fairly sick. It’s earlier on the trajectory that we can make a difference.

Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. 

. 2010;363(8):733-742. doi:10.1056/NEJMoa1000678

Joe Contreras, MD, chair of the Institute of Pain and Palliative Medicine, explains how some common misconceptions may be hindering patients from receiving potentially outcome-improving palliative care.

 Earlier Palliative Care May Improve Patient Outcomes

For this episode of “The Vitals,” Oncology Nursing News spoke with Joe Contreras, MD, about 3 common myths patients have about palliative care. Dr. Contreras, chair of the Institute of Pain and Palliative Medicine, Hackensack Meridian Health, debunks these misconceptions by explaining how palliative care is a specialty, rather than a setting, of medicine, and that patients who receive this care while undergoing active treatment may achieve better outcomes.

Podcasts

For National Hospice and Palliative Care Awareness Month, Joe Contreras, MD, spoke to Oncology Nursing News® about some common misconceptions between the 2 and how oncology nurses can more effectively speak with their patients about palliative care. 

Debunking 3 Common Myths Patients with Cancer Have About Palliative Care

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.

, investigators found that, although they experienced greater delirium-related distress (

caregivers had a greater tendency to choose lighter sedation

= .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; 

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.

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.

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

To ensure that patients with cancer receive optimal care, the definition of personalized medicine needs to be broadened to include social determinants of health, according to Karen Winkfield, MD, PhD.

“Unfortunately, the COVID-19 pandemic has shown that in the United States, we don’t quite have the public health infrastructure that we need, not yet,” said Winkfield, executive director of the Meharry-Vanderbilt Alliance, the Ingram Professor of Cancer Research, and professor of radiation oncology at Vanderbilt University Medical Center, during the Greenspan Lecture at the 

 CFS®, a program hosted by the Physicians’ Education Resource® (PER®), LLC.

“However, we have an opportunity to think about it in a way that impacts communities at large, and, more specifically, the individual patients that are walking through our doors. What ways can we impact what is happening to the people that we serve?” Winkfield asked during her presentation entitled: “Precision Medicine: Ensuring every patient gets the right treatment at the right time.”

The field of precision oncology has grown significantly in recent years with the integration of broad molecular testing, identification of new prognostic markers, and understanding of mechanisms of resistance. With the development of targeted therapy, many patient populations can receive care that directly reflects unique characteristics of their tumor genomics and personal genetics.

However, Winkfield advises the field to further broaden the role of precision medicine to include not only genomic factors, but microbiome features, patient exposures and behaviors, clinical tests, and patient-contributed data to create a knowledge network that will allow for precision medicine to become more personalized.

“There are components of both [precision and personalized medicine] that we really need to think about today as we are talking about all the innovations that are being made in terms of how we manage chemotherapeutics. It is important to think about what we mean when we talk about precision oncology. Are we doing our best to personalize medicine?” Winkfield questioned.

Factors of Health Disparities in Cancer Care

Despite the downward trends in cancer-related deaths observed across all racial and ethnic patient populations, health disparities still exist, Winkfield explained.

 For example, one of the most widely known disparities in cancer care exists between White and African American patients.

There has been a decline in disparity for overall cancer death between African Americans and Whites from 33% in 1990 to 14% in 2016.

 However, achieving health equity remains a key goal in cancer care, Winkfield said.

Although biologic determinants like genetics, biology, and comorbidities inevitably have a role in creating these disparities, Winkfield hypothesized that social determinants, such as socioeconomic status, access to care, and sociocultural barriers, are the main contributors to these gaps.

Social determinants of health include economic stability, neighborhood and physical environment, education, food, community and social context, and health care system factors. Negative social determinants, such as low income, lack of access to transportation, food, and social support, literacy challenges, and limited health care provider availability, are associated with poor health outcomes, including increased mortality and morbidity, lowered life expectancy, increased health care expenditures, decreased health status, and functional limitations.

“The social determinants go beyond just food; it is transportation, employment, literacy, and health literacy. These are all issues we have to think about when we ask ourselves how we design personalized medicine programs and holistic care to the person who is right in front of us,” Winkfield said.

Although social determinants of health are becoming more understood, significant efforts from a socioeconomic and political context are needed to address them and provide precision medicine to all patients.

Notably, the COVID-19 pandemic required rapid integration of many technologies that may start to bridge some of these gaps that are influenced by social determinants of health, such as accessibility. The utility of telemedicine during the height of the pandemic is one lesson that can be taken away. Winkfield underscored that the pandemic showed feasibility with localized or virtual care for certain procedures and patient conversations. Additionally, even without the context of COVID-19, clinical trial consent forms are likely able to be signed virtually rather than having patients come into the clinic.

Importantly, adding virtual elements to cancer care can significantly lower the burden of treatment for patients, particularly for those who live in rural communities or who must rely on public transportation.

“Our ability to innovate the way that we have done with COVID-19 where telehealth is being compensated, these are the sorts of things we need to advocate for because, frankly, it makes it much easier for patients. This is what patient-centric care is about,” Winkfield said.

International Journal of Radiation Oncology, Biology, Physics

 stated that achieving health equity is of critical importance for patients receiving radiation therapy and that the renewed passion to protect vulnerable patients observed during the COVID-19 pandemic should continue to address the disparities in care.

Winkfield advised oncologists to be advocates of bringing more equitable cancer care in clinical trials and policy implications to their institutions and communities. Additionally developing a diverse workforce and working in direct collaboration with community-engaged researchers is a great start at addressing these gaps.

Specifically, Winkfield called attention to the need for redesigned and inclusive clinical trials. She highlighted the example of multiple myeloma where although African Americans comprise 20% of the multiple myeloma population in the United States, they comprise only 5% of FDA registration trials in multiple myeloma.

In addition to African American patients, adolescent/young adults, older adults, other racial/ethnic minorities, LGBTQ+ individuals, individuals in rural areas, and patients of lower socioeconomic status are some of the patients at the greatest risk for exclusion from clinical trials.

“If we are only getting the clinical trials in the spaces at the places that are very homogenous or have not done a good job at being inclusive, are we really moving the needle?” Winkfield asked.


Developing an actionable framework for stakeholders to address cancer care disparities within medically underserved populations is of paramount importance to ensure population-health care is implemented.

Ultimately, developing an understanding of the cross-cutting issues that span the entire cancer care continuum from prevention to detection, diagnosis, and treatment to survivorship and end of life is critical. In addition to health equity, some of these issues include quality of care, communications, and decision making.

“We need to figure out how we can create an environment where we provide precision oncology, but we provide it for every patient so that every patient gets the right treatment at the right time,” Winkfield concluded.

Winkfield K. Precision medicine: ensuring every patient gets the right treatment at the right time. Presented at: 39th Annual CFS®: November 3-5, 2021; New York, NY.

AACR cancer disparities progress report 2020. AACR. Accessed November 4, 2021. 

https://cancerprogressreport.aacr.org/disparities/

Siker ML, Deville C Jr, Suneja G, et al. Lessons from COVID-19: addressing health equity in cancer care. 

. 2020;108(2):475-478. doi:10.1016/j.ijrobp.2020.06.042

Loree JM, Anand, Dasari A, et al. Disparity of race reporting and representation in clinical trials leading to cancer drug approvals from 2008 to 2018. 

. 2019;5(10):e191870. doi:10.1001/jamaoncol.2019.1870

Winkfield KM, Regnante JM, Miller-Sonet E, et al. Development of an actionable framework to address cancer care disparities in medically underserved populations in the United States: expert roundtable recommendations. 

. 2021;17(3):e278-e293. doi:10.1200/OP.20.00630

This article was originally published on OncLive as “Personalized Medicine Could Be the Key to Bridging Health Disparities in Cancer Care”

The COVID-19 pandemic has demonstrated that personalized medicine should consider social determinants of health disparities as well as genomic factors. 

Personalized Medicine May Help Alleviate Certain Health Disparities in Cancer Care

Patients with dual-eligible status for Medicaid and Medicare are more likely to receive “aggressive” end-of-life care, defined as repeated emergency room visits, hospitalizations, and intensive care unit admissions in place of hospice care services, reveal findings from a study published in 

. Furthermore, findings suggest that patients at comprehensive cancer centers or integrated delivery systems experience superior quality end-of-life care.

Among 100,549 patients over the age of 65 who died during the study interval, the 22% who were dually eligible for both Medicaid and Medicare reported inferior care across nearly every predefined measures. Compared with nondual beneficiaries from the same population, dual beneficiaries reported higher rates of hospitalization per 30 days (12.6% vs 11.3%, respectively; 

 < .001), and a higher number of patients who died in the hospital setting (30.2% vs 26.2%; 

 < .001). Moreover, less hospital deaths and better access to palliative services were associated with care in a cancer center-affiliated delivery system.

“Dual-eligible beneficiaries dying of cancer have higher utilization at the end of life in comparison with non–dual eligible beneficiaries across most measures,” said Lindsey A. Herrel, MD, MS, University of Michigan, and colleagues. “Second, certain differences in utilization at the end of life for dual-eligible beneficiaries are mitigated in part by receiving care at an affiliated delivery system such as a cancer center or an integrated delivery network. These findings highlight important system-level opportunities to reduce high-intensity care at the end of life and improve the quality of end-of-life care for dual-eligible patients with cancer.”

Researchers utilized the surveillance, epidemiology, and end results (SEER) registry data connected to Medicare claims to analyze quality of care for beneficences who received a diagnosis between 2009 and 2014 and died from their disease. Seven end-of-life quality measures were linked to high-intensity or “aggressive” care and were measured with multivariable logistic regression models. Researchers used regression-based techniques to differentiate between cancer center or integrated delivery networks versus hospitals without similar affiliations.

The Blinder-Oaxaca decomposition model was used to identify treatment quality gaps between the various groups. Data showed that for dual-eligible beneficiaries, treatment at an “affiliated delivery system” resulted in a quality-of-care gap reduction by 95% in terms hospitalization (

 = .02), 90% in-hospital setting deaths (

< .001), and a 57% reduction in hospice service utilization.

One possible limitation of the study was that cancer centers and integrated systems were classified together. In reality, quality of care between dual beneficiaries may differ between those 2 delivery care systems due to different mechanisms, resources, and philosophies. Furthermore, the inclusion criteria excluded beneficiaries under the age of 65 so the results from this study may not be generalizable to that population.

The study authors also noted that care at the end of life is highly personal and that the level of care “intensity” at the end of life should be determined by a patient with the support of their family and care team.

“Although often times patients, particularly those with constrained resources, have limited options on where to receive care, where patients receive care is a potentially modifiable factor, and they may specifically seek out physicians and other health care providers with whom they feel most comfortable discussing end-of-life scenarios and preferences,” concluded the authors. “Physicians and other health care providers should be aware of this gap in care for dual-eligible patients and other vulnerable populations so that needs can be identified and resources can be appropriately directed to patients and families who need them.

“For health systems, there is an opportunity to improve value in care at the end of life by devoting time and resources to help providers to develop improved communication skills and a deeper knowledge of how to elicit patient preferences across the spectrum of patients, regardless of vulnerability, and by using available resources to deliver goal-concordant care.”

Herrel L, Ziwei Z, Ryan AM, Hollenbeck BK, Miller DC. Intensity of end-of-life care for dual-eligible beneficiaries with cancer and the impact of delivery system affiliation. 

“Health care providers should be aware of this gap in care for dual-eligible patients and other vulnerable populations so that needs can be identified and resources can be appropriately directed.”


Study Identifies Gaps in End-of-Life Care for Patients Eligible for Both Medicaid and Medicare

Approximately 1 out of 3 nurses reported that they do not feel emotionally healthy, according to findings from a non-incentivized online survey for nurses across the US launched by the American Nurses Foundation.

Specifically, 34% of nurses shared that they do not consider themselves to be emotionally healthy as a consequence of the COVID-19 pandemic. Furthermore, 42% of nurses said they have experienced trauma related to COVID-19 and 50% of nurses shared that they have considered leaving their position. Young nurses, in particular, noted that they feel a stigma continues to exist around seeking mental health support.

Notably, the findings also showed that healthy diet and accurate COVID-19 information was associated with emotional health.

“A robust nursing workforce is essential to our nation’s health and therefore, nurses’ well-being and mental health must be a top priority,” said Kate Judge, American Nurse Foundation Executive Director, in a press release.

 “The data collected from this survey overwhelmingly demonstrate the need to provide consistent and comprehensive support for our nation’s nurses.”

This most recent survey represents the fourth installment of “Pulse on the Nation’s Survey Series on Mental Health and Wellness.” Between August 20, 2021, and September 2, 2021, a total of 9,572 nurses responded to the survey, either completely or partially, with a ± 1.0% margin of error and a 99% confidence level. Among those who responded, 88% completed all the mental health-related questions.

Among participants, 77% identified as White, 10% identified as Black or African American, 5% identified as Hispanic or Latino, and 4% identified as Asian. Participants included nurses in all fields of care. Thirty-six percent of nurses self-reported as 55 or older.

Of the nurses who shared that they did not feel emotionally healthy, 52% worked in intensive or critical care, 46% worked in emergency departments, 44% worked in medical-surgical units, 40% worked in acute care, and 36% were nurse managers. Fifty-one percent were between the ages of 25 and 34, 47% were under the age of 25, 42% were between the ages of 35 to 44, 35% were between 45 to 54%, and 21% were older than 55%.

Notably, younger nurses were more likely to share that they felt emotionally unhealthy, with almost half of nurses under the age of 25 identifying as emotionally unhealthy, compared to only a quarter of nurses 55 or older.

Regarding trauma, 42% of responders indicated that they experienced an event that was extremely stressful, disturbing, or traumatic. In terms of race and ethnicity, a significant response came from Latino and Hispanic respondents, of whom 49% shared that they had experienced a traumatic event. The departments in which nurses were most affected by trauma were intensive or critical care and the emergency department.

In addition to experiencing poor emotional health, a high percentage of nurses have experienced trauma and a desire to leave their position because of the COVID-19 pandemic. 

Supportive Care