Palliative Care for Patients with Cancer Guideline Update

Dr. Debra Lundquist, PhD, RN and Dr. Arun Ghoshal, MD, MBBS discuss the new update to the palliative care for patients with cancer guideline developed by an interdisciplinary Expert Panel. They share the key updated recommendations on the most effective palliative care interventions, how these recommendations relate to other supportive care services, interventions for family caregivers, care partners, and communities, referrals to specialist palliative care services, and specific strategies for the integration of palliative care for patients with hematologic malignancies and those on early phase clinical trials. Dr. Lunquist and Dr. Ghoshal also discuss the contextual factors that affect equity at the intersection of palliative and oncology care, the impact of this guideline refresh for clinicians and patients, and future innovations in the field of palliative care. Read the full guideline update, “Palliative Care for Patients with Cancer: ASCO Guideline Update” at www.asco.org/supportive-care-guidelines.

TRANSCRIPT

This guideline, clinical tools, and resources are available at www.asco.org/supportive-care-guidelines. Read the full text of the guideline and review authors’ disclosures of potential conflicts of interest in the Journal of Clinical Oncology, https://ascopubs.org/doi/10.1200/JCO.24.00542

Brittany Harvey: Hello and welcome to the ASCO Guidelines podcast, one of ASCO’s podcasts delivering timely information to keep you up to date on the latest changes, challenges, and advances in oncology. You can find all the shows, including this one, at asco.org/podcasts.   

My name is Brittany Harvey, and today I'm interviewing Dr. Arun Ghoshal from Princess Margaret Cancer Center and Dr. Debra Lundquist from Massachusetts General Hospital, authors on, “Palliative Care for Patients with Cancer: ASCO Guideline Update.” Thank you for being here, Dr. Ghoshal and Dr. Lundquist.

Dr. Ghoshal: Thanks, Brittany. Thank you for having us here.

Dr. Lundquist: Yes, it's a pleasure.

Brittany Harvey: Great. Then before we discuss this guideline, I'd like to note that ASCO takes great care in the development of its guidelines and ensuring that the ASCO conflict of interest policy is followed for each guideline. The disclosures of potential conflicts of interest for the guideline panel, including Dr. Lundquist and Dr. Ghoshal, who have joined us here today, are available online with the publication of the guideline in the Journal of Clinical Oncology, which is linked in the show notes. 

So then, to start us off, Dr. Lundquist, what prompted this guideline update, and what is the scope of the current update for palliative care for patients with cancer?

Dr. Lundquist: Sure. So the goal of this refresh is really to provide oncology professionals with current recommendations regarding palliative care and assess which of the 2016 recommendations remain valid. The scope did increase to also include hematologic malignancies and participants of early phase clinical trials. In addition, this was an opportunity to reflect more recent evidence around the understanding of linguistic, geographic, ethical, and contextual factors that affect equity at the intersection of palliative and oncology care. This update also increased discussion about the inclusion of palliative care, as I mentioned earlier, for the enrollment of patients in clinical trials. And also, in terms of the equity piece, there is also a companion manuscript with the guidelines that focused on the health equity in the oncology palliative care setting.

Brittany Harvey: Excellent. Thank you for setting the stage for this update, Dr. Lundquist.  

So then next, I'd like to review the key updated recommendations for our listeners. So starting with clinical question one, Dr. Ghoshal, what are the key recommendations regarding the most effective interventions to provide palliative care to patients with cancer?

Dr. Ghoshal: As we know, healthcare providers should proactively engage in the early integration of specialized, interdisciplinary palliative care teams for patients diagnosed with advanced solid tumors, and as mentioned, not only solid but also hematological malignancies. The most important thing is that palliative care should be offered not only for inpatients but also for outpatients, and oftentimes, when we talk about early palliative care, it is in concurrence with active cancer treatment. So if you want to talk about the core components of such an effective palliative care practice that would encompass establishing a nurturing rapport and relationships with patients and their family caregivers to foster trust and open communication. And obviously, it will encompass symptoms, distress, and functional limitations comprehensively, including but not only limited to pain, dyspnea, fatigue, sleep disturbances, mood disorders, nausea, and constipation.  

Another important part is providing education and facilitating discussions to enhance patients' understanding of their illness and prognosis. That means we need to play an active part in clarifying the treatment goals through a shared decision-making process that aligns the patient's values and preferences with their physicians. And apart from that, in this revised guideline, the key evidence about question number one, which is from 2016, and updated to the present is mainly based on three trials with a low risk of bias. These three studies actually demonstrated that early referral to specialized palliative care of patients with advanced cancer led to improvement in the quality of life and also mood, which was a secondary outcome in that study and the higher likelihood of discussing or documenting end-of-life care preferences. I know that the link to the full documents are in the show notes, and I would encourage the listeners to refer to the supplement to the paper that is coming out in the Journal of Clinical Oncology for understanding and getting a detailed insight into the studies which are included in these recommendations.

Brittany Harvey: Absolutely. Early integration of all those aspects of palliative care that you just detailed are imperative. And as you just mentioned, the listeners can find a link to the full guideline in the show notes of this episode to refer back to the more detailed aspects of the guideline. 

So following those recommendations, Dr. Lundquist, what does the expert panel recommend regarding how palliative care services should relate in practice to other supportive care services?

Dr. Lundquist: The panel examined the role of the use of additional supportive care services that focus on services including nurse navigation, lay navigation, community and home health care, as well as geriatric oncology, psycho-oncology, pain services, and telehealth services. And findings supported that models of delivering palliative care with the use of other services as well can really improve the patient experience. And one of the ways of doing that, more utilization of standardized assessments of symptoms, certainly, but also encompassing the multidimensions of distress, spirituality, and psychosocial factors. And then emphasizing discussions around prognostic and treatment options to really get a better sense about the patients' understanding of their prognostic awareness, which may also lead to more improved communications around advanced care planning. 

And the studies around this guideline supported that most pragmatic approaches to ensuring that patients benefit from palliative care is really through the involvement of this interdisciplinary team and looking from a broad lens, looking at all their potential palliative care needs that may need to be met. But certainly, referral to a specialized interdisciplinary palliative care team is also very important. But it really is where that step before is really looking at the whole experience of the patient and where they are in their cancer trajectory.  

Brittany Harvey: Excellent. Yes, incorporating all of those additional supportive care services really benefit patients.  

So then beyond these recommendations for patients with cancer, Dr. Ghoshal, what are the recommendations for interventions that are helpful for family caregivers, care partners, and communities?

Dr. Ghoshal: This is a very pertinent question for palliative care practitioners. So, interesting to note that the panel found that there is limited data that exist on how best to support the caregivers of patients with advanced cancer, and especially so in under-resourced settings. And also, most of the evidence that came from the literature is from data which was collected in studies before the COVID-19 pandemic. So the previous guideline stressed the option of phone interventions for those in rural or under-resourced areas. But as we know, with the growth of telehealth and telemedicine related to the pandemic, especially after the pandemic, more people are used to such interventions, more people probably could access and feel comfortable with virtual care. So telehealth, app-based support, and virtual care options, which are probably available and largely familiar to many people, could potentially allow increased access to support services.

Talking about these support services, the focus that has been mostly seen in literature are about education and training programs to empower the caregivers of these patients with advanced cancer, psychosocial support services for emotional well-being of the carer as we know that it can be pretty tough for someone to deal with cancer and also for their caregivers. Also sometimes practical assistance with daily tasks, if possible, to ease the burden of caregiving. Sometimes importance is there on respite care to provide temporary relief for these caregivers. Community supports can play a big role for sharing the resources. Social connections can also play an important part when it’s available. And also very important and we all know that advance care planning discussions to ensure patients' wishes are known to their caregivers. And of course, we must keep this in our mind that cultural sensitivity in caregiving practices is very important to accommodate people from diverse backgrounds. So mostly these are interventions, as mentioned in the guideline, which are aimed at supporting caregivers in their role to alleviate their stress, and to improve the overall caregiving experience for both caregivers and patients with cancer.

Brittany Harvey: Thank you for reviewing the recommendations for support services for both caregivers and care partners in addition to patients with cancer. 

So then Dr. Lundquist, you previously mentioned referral to specialist palliative care services. Who does the expert panel recommend should be offered or referred to palliative care services, and when should those referrals occur? 

Dr. Debra Lundquist: And as the panel looked at referral to palliative care services, we looked at essentially patients with advanced solid tumors or hematologic malignancies, particularly, those patients with cancer who have unaddressed physical needs, psychosocial needs, and spiritual distress, and as we just heard, the importance of including the caregivers in care and offering palliative care. And the caregivers may include family members, chosen family, friends of individuals who have advanced cancer. And then also looking at including patients that we’ll talk a little bit later about the patients that are on phase one clinical trials as well and why they might be another population to be considering. 

But certainly, as we’ve mentioned a little bit already, early in the course of the advanced cancer diagnosis is a very important time to initiate the palliative care. The panel recommends not waiting for the discontinuation of antineoplastic therapy or treatments around the cancer diagnosis, but rather focusing on the specific palliative needs of the individual and really thinking more about it occurring when the patient is getting their active treatment as well in a way to better support them while they potentially may be experiencing side effects from their treatments, from their disease, and thinking about this earlier in the disease continuum.  Ideally, clinicians and organizations really need to prioritize the assessment of these dimensions of the patient experience for earlier recognition of their needs at the time of diagnosis of their advanced cancer, but to also really be thinking about while the patients are still receiving active treatment, to really be identifying and determining what other palliative care needs may need to be addressed. 

Brittany Harvey: Definitely, those are key considerations for clinicians, and I thank you for defining what early referral means in these circumstances. 

So, you both mentioned that this guideline expanded to patients with hematologic malignancies. Dr. Ghoshal, what strategies are recommended for the integration of palliative care into the care of patients with hematologic malignancies? 

Dr. Arun Ghoshal: The updated review this time identified three publications. Actually, two of those publications are randomized controlled trials including patients with hematologic malignancies, especially those with acute myelogenous leukemia and those receiving hematopoietic stem cell transplantation. It is important because the trajectory of illness for hematologic cancers and solid tumors can be a bit different. Patients with hematologic malignancies, despite newer therapies offering long-term survival, often face significant side effects. Compared to the solid tumor patients, those with hematologic cancers experience higher hospitalization rates, frequent intensive care unit admissions, and unfortunately, the rates of in-hospital deaths are also more in these patients. And as a result of that, the typical length of stay in hospice is shorter for these patients. Regardless of prognosis, the recommendations state that proactive palliative care should begin at diagnosis and continue throughout the illness trajectory and survivorship of these patients with hematologic cancers.  

Historically, integrating specialist palliative care has been infrequent in this group of patients due to misconceptions, and obviously, limitations. However, the latest evidence that we’re talking about supports the benefits of palliative care for patients with hematological cancers, especially, improving their quality of life and psychological outcomes. However, given the paucity of studies in this domain, further research is needed to expand the recommendations beyond the studied population.

Brittany Harvey: Thank you for highlighting the specific needs and recommendations for this patient population.  

So then, Dr. Lundquist, for the final clinical question, you’ve already touched on this a little bit. But what is the role of palliative care for patients with cancer participating in early phase cancer clinical trials? 

Dr. Debra Lundquist: As I mentioned earlier, the panel this year included this patient population in the refresh of the guidelines. And the early phase clinical trial population is a population of patients who present functionally well, however, most present with advanced disease and have frequently received multiple lines of therapy prior to coming to the clinical trial. They may experience a distinct set of symptoms and concerns with unique supportive and palliative care needs. When we looked at the literature, there is a growing body of research around this, although it is still quite small at this time. Certainly an area for future research.  

Patients who are participating on early phase clinical trials come to the trial and they may be struggling to cope with the uncertainty regarding their future, as well as symptoms they may be experiencing and really not knowing what that clinical trial experience is going to look like. So the panel, as we were looking through the literature, it’s becoming more clear that this is a patient population who may have existing physical and psychosocial concerns who would possibly benefit from earlier identification of their palliative care needs as well as intervention with palliative care support coming on to the clinical trial. With the research being limited, the focus on better understanding their palliative care needs is an area for the future that we really may want to be considering more in terms of improving the patient experience. This is a patient population who, I think, in terms of ongoing research, we’re starting to see the benefits and looking at their unique dimensions of their care as they come onto the trial. But then providing  the opportunity to enhance their experience and also better identify their distinct supportive care needs may, in fact, enhance their quality of life while they're on the early phase clinical trial.

Brittany Harvey: I appreciate you both reviewing all of this updated and expanded recommendations from the expert panel. 

In your view, Dr. Ghoshal, what is the importance of this update and how will it impact both clinicians and patients? 

Dr. Arun Ghoshal:  So 2015 to 2023, the time and the duration that the update took into consideration, you won’t believe, we got 52 randomized control trials on the subject, and one systematic review, which is the evidentiary basis for the guideline recommendations. So the ASCO guideline update on palliative care for patients with cancer underscores the importance of a comprehensive, patient-centered approach to care that prioritizes symptom management, communication, and support for not only patients but also their families. It distinguishes itself through its rigorous methodology, the expert consensus from a wide array of people who take part in these updates, and also, there is a special section for all the recommendations as far as clinical relevance is considered. The updates are very timely and also comprehensive for sure. So all of these features make it a valuable resource for clinicians who want to seek guidance on providing optimal palliative care to patients with cancer.  

I believe that the uptake, as far as possible, by institutions and physicians, factoring physicians all around the world, these guidelines would benefit the patients by providing evidence-based recommendations that improve symptom management, enhance care communication, and shared decision making, ultimately ensuring timely access to palliative and supportive care services. The uptake will support the caregivers and hopefully will help a long way in optimizing the end-of-life care for these patients suffering from cancer. 

Brittany Harvey: Definitely, we hope that these updated guidelines are a useful resource for clinicians, as you pointed out, to provide better end-of-life care for all patients with cancer.  

So, you both touched a little bit on the limited evidence and some future research opportunities. So finally, to wrap us up, Dr. Lundquist, what are the outstanding questions and future research needed on palliative care in patients with cancer?

Dr. Debra Lundquist: As we’ve been hearing about in our conversation today, the findings and the benefits of palliative care, they’re well known. We know the difference palliative care makes in the life of patients that are experiencing or living with advanced cancer as well as their caregivers and their families. But certainly, more studies are needed to explore more innovative and other models of care. Because we also need to acknowledge that as much as we want every single person to have the opportunity to get palliative care, the workforce is not going to support that. So this is an important time to think about innovative, potentially scalable, and compelling strategies to address the unmet needs of patients in order to deliver palliative care.

Innovative approaches are needed, particularly, to overcome the shortage of the workforce in order to better support the unique needs of our patient population. So as we’re thinking forward, novel application of interventions to address unmet needs tailored to the unique needs of patients across the disease trajectory, and that may include collaborative care models, telehealth, additional training and resources, for example, nurses; advanced practice providers. But as we’re doing that, we really need to be thinking about how we’re going to design, develop, and test these interventions in order for them to be scaled appropriately. And then how do we implement and disseminate across different settings, rural, urban, different locations, in order to best meet the needs of this patient population.      

Brittany Harvey: Absolutely. Those are important questions for us all to consider moving forward, and we'll look forward to future research in these areas to continue to provide optimal palliative care to all patients. 

So I want to thank you both so much for all of your work on this guideline update, and thank you for taking the time to share the important nuances of this guideline with our listeners today, Dr. Lundquist and Dr. Ghoshal. 

Dr. Arun Ghoshal: It's been a pleasure being here. 

Dr. Debra Lundquist: Thank you very much, Brittany. It was a wonderful opportunity.

Brittany Harvey: And thank you to all of our listeners for tuning in to the ASCO Guidelines podcast. To read the full guideline, go to www.asco.org/supportive-care-guidelines. You can also find many of our guidelines and interactive resources in the free ASCO guidelines app, available in the Apple App Store or the Google Play Store. If you have enjoyed what you've heard today, please rate and review the podcast and be sure to subscribe so you never miss an episode. 

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