Palliative care flourishing but ‘significant hurdles’ remain
With one in six cancer survivors reporting high-impact chronic pain that limits their life and work activities, palliative care increasingly has been recognized as an important component of cancer treatment and survivorship.
Research has shown palliative care can substantially decrease physical and psychological pain, and potentially improve outcomes. For example, a study published last year in JAMA Oncology showed administration 31 to 365 days after diagnosis was associated with significantly longer survival among patients with advanced-stage lung cancer.
These findings have helped distinguish palliative care — long considered synonymous with hospice care — as an integral part of oncology care.
“Palliative care should be delivered at the same time as all other cancer therapies,” Diane E. Meier, MD, FACP, FAAHPM, director of Center to Advance Palliative Care, vice chair for public policy, and professor of geriatrics and palliative medicine at Icahn School of Medicine at Mount Sinai, told HemOnc Today. “Patients do not stop oncology care to go on palliative care. That’s a very important nuance.”
ASCO, National Comprehensive Cancer Network and other organizations have endorsed early implementation of palliative care during cancer treatment, helping to overcome the stigma that it is a harbinger of end-of-life care.
“Treating symptoms needs to be routine practice, and the palliative care discipline can help support our colleagues across all disciplines to gain the knowledge and skill to deal with suffering,” said Meier, a HemOnc Today Editorial Board Member. “We have become hyperfocused on cure and disease treatment without paying attention to the human experience. Not only is that morally wrong, the data are clear that — when we address suffering — patients do better, live longer and are more likely to complete treatment.”
HemOnc Today spoke with palliative care specialists about how studies that link its early use to improved survival may contribute to its increased acceptance in oncology, the impact of chronic pain on cancer survivors, and what formidable challenges — such as the opioid epidemic and a looming shortage of palliative care providers — may mean for the future of the discipline.
Study results published over the last few years have helped overcome the misperception that palliative care is synonymous with hospice care by demonstrating the former can extend survival among patients with cancer when implemented early in the treatment course.
Multiple clinical trials that evaluated different models for the delivery of palliative care have shown that earlier involvement is beneficial for both patients and caregivers, according to a review article by Jennifer S. Temel, MD, and Paul B. Jacobsen, PhD, published in Journal of Clinical Oncology.
“The goal of these delivery models is to improve patients’ experiences and outcomes throughout their illness course rather [than] to wait to involve palliative care until they are struggling with uncontrolled symptoms,” Temel and Jacobsen wrote. “These studies have demonstrated that earlier and longitudinal involvement of palliative care improves patients’ quality of life, mood and satisfaction with care.”
Thanks in part to this research, the field of palliative care in oncology “is now flourishing,” they added, and many institutions are developing their palliative care programs.
One such study, published in 2017 in JAMA, showed how the integration of electronic patient-reported outcomes into routine care increased survival among patients with metastatic cancer.
“I believe that this study has had a profound impact on practice, although these are still early days,” Ethan Basch, MD, MSc, director of the cancer outcomes and research program at UNC Lineberger Comprehensive Cancer Center and distinguished professor of medical oncology at UNC School of Medicine, told HemOnc Today. “There are innumerable ongoing initiatives across the United States and globally to integrate patient-reported outcomes into practice, and many follow-up studies are being done globally. Multiple pharmaceutical companies are growing their digital therapeutics groups. Also, Medicare has suggested including patient-reported outcomes in its next alternative payment model for oncology.”
Basch and colleagues randomly assigned 766 patients (median age, 61 years; range, 26-91; 86% white; 58% women) with metastatic cancer to usual oncologic care or to oncologic care with electronic patient-reported outcomes (PROs). Those in the electronic reporting group self-reported 12 symptoms from NCI’s Common Terminology Criteria through a web-based questionnaire platform, which sent email alerts to a clinical nurse when patients reported severe or worsening symptoms and compiled a symptom history for the oncologist.
After median follow-up of 7 years, results showed patients assigned the electronic reporting method lived more than 5 months longer than those assigned usual care (median OS, 31.2 months vs. 26 months; HR = 0.83; 95% CI, 0.7-0.99).
Three years after publication of this study, these data likely have provided an impetus to change practice so symptoms are addressed earlier by palliative care specialists or oncologists, Basch said.
“Practice culture is shifting to be more interested in this kind of patient engagement,” Basch said. “That said, the challenge moving forward is around implementation. It requires technology, changes in workflow and staff deployment, and enlisting patients.
“Quality improvement methods are necessary for rolling out and sustaining a patient-reported outcome program, with institutional support at multiple levels,” he added. “So, although I think there have been major shifts and enthusiasm, it remains to be seen what best approaches and business models will emerge toward broad implementation of patient-reported outcomes in practice.”
Another study, published last year in JAMA Oncology, showed associations between palliative care and longer survival among a difficult group of patients to treat — those with advanced lung cancer.
“Lung cancer populations are unique in some ways and usually suffer from increased physical and mental health symptom burden — including higher rates of depression symptoms — and very poor prognosis compared with other cancer populations,” Donald Sullivan, MD, MA, MCR, associate professor of medicine and associate fellowship program director in the division of pulmonary and critical care medicine at Oregon Health & Science University, told HemOnc Today. “These results likely would be comparable for patients with other cancer types who have a lot of supportive care needs or advanced disease.”
Sullivan and colleagues retrospectively analyzed data on 23,154 patients (mean age, 68 years; 98% men) with advanced lung cancer diagnosed between 2007 and 2013 who obtained care in the Veterans Affairs health care system. Most patients (57%) received palliative care, and researchers noted a 41% relative increase in palliative care use during the 7-year study period.
Results showed receipt of palliative care within 30 days after lung cancer diagnosis appeared associated with shorter survival (adjusted HR [aHR] = 2.13; 95% CI, 1.97-2.3) compared with no palliative care. However, palliative care received 31 to 365 days after diagnosis appeared associated with longer survival (aHR = 0.47; 95% CI, 0.45-0.49). Palliative care received more than 1 year after diagnosis had no effect on survival (aHR = 1; 95% CI, 0.94-1.07).
“Hopefully these results help dispel several myths about palliative care, including that it is only for patients at the very end of life and that it worsens survival, which is not true,” Sullivan said. “Ultimately, palliative care is a referral service that requires gatekeepers to suggest it to patients. The significant hurdles and the underuse of palliative care, I believe, are related to the lack of clinicians thinking of it or suggesting it to patients.”
As the study by Basch and colleagues highlighted, the evolution of technology has greatly advanced the palliative care field by letting patients report their daily symptoms through phone-based applications.
This technology also has helped to reduce costs.
“This cellphone technology asks the patient if they have symptoms and, if so, how bad they are,” Meier said. “This isn’t complicated artificial intelligence or algorithms that try to figure out who is at risk for symptoms. It doesn’t require a lot of technology; it just requires a will to do it and attention to the results. Studies show that, if patients do this daily, it can have a huge impact on outcomes and on cost.”
In a randomized controlled trial, results of which were presented in 2018 at Palliative and Supportive Care in Oncology Symposium, patients with metastatic solid tumors who used a smartphone app reported reduced pain and had fewer hospital admissions.
The app, called ePAL, monitored and helped patients address pain related to advanced cancer.
Researchers randomly assigned 56 patients to a control group that received standard care for 8 weeks. The other 56 patients, assigned to an intervention group, used the ePAL app in addition to standard care.
Patients in the intervention group received alerts on their smartphones with tips for daily pain management, and they reported their pain levels on a scale of 0 to 10. The app assessed pain three times a week — distinguishing urgent from nonurgent pain — and provided feedback to patients in real time.
If patients experienced moderate pain, the app asked them questions and electronically advised them on management. In the case of severe or worsening pain, the app connected the patient to a nurse who responded within an hour.
All patients had similar pain levels at the start of the study, with a mean score of about 4 on the pain scale. After 8 weeks, pain levels did not change among patients in the control group. However, pain levels among patients assigned the intervention declined by 20% to a mean score of 2.99.
Moreover, patients who used the app had fewer pain-related hospital admissions than nonusers (4 vs. 20), representing a 69% reduction per patient in risk for a pain-related admission during the study.
General anxiety scores increased from 6.67 to 7.68 out of a possible 21 among the intervention group and decreased slightly — from 5.9 to 5.03 — among the control group. However, patients who reported pain more than twice a week via the app did not experience increased anxiety.
“This approach is more expensive and inconvenient if a patient does not have a cellphone,” Meier said. “It may require an automated phone call to the patient that asks about their symptoms, but the problem is you don’t know if the phone call is going to happen when the patient is at home or is awake. With the app, they just respond when they can. It’s so much more convenient and much less expensive.”
Dealing with pain
A research letter by Jiang and colleagues, published last year in JAMA Oncology, highlighted the need for effective palliative care during treatment and beyond.
The researchers used the 2016 to 2017 National Health Interview Survey to investigate the prevalence of chronic pain among 4,526 adult cancer survivors.
More than one-third (34.6%; 95% CI, 32.7-36.5) reported chronic pain, and about one in six (16.1%; 95% CI, 14.8-17.5) reported high-impact chronic pain that limited life or work activities most days or every day.
Applied nationally, the data translate to 5.39 million survivors with chronic pain and 2.51 million survivors with high-impact chronic pain. These figures likely will increase, as the number of cancer survivors in the United States is expected to rise from 15.5 million in 2016 to 26.1 million in 2040.
The prevalence of chronic pain among survivors supports the role of palliative care across the treatment trajectory, from diagnosis to survivorship to end-of-life care, Betty R. Ferrell, RN, PhD, and colleagues wrote in an article published in Journal of Clinical Oncology.
Palliative care is essential during survivorship because surveillance for recurrence and attention to delayed treatment effects are known to impact quality of life, Ferrell and colleagues wrote. Palliative care also can address delayed treatment effects, they added.
An ASCO guideline on managing chronic pain among cancer survivors recommends clinicians — in addition to conducting an initial comprehensive pain assessment — screen patients for pain at every encounter.
Regular assessments are necessary because patients may not disclose their pain without being prompted.
“Patients are terrified to bother their doctors because they know how busy they are; they don’t want to be perceived as a complaining patient and they want their doctor to focus on curing them and prolonging their life,” Meier said. “There is some basis to that. If a doctor gets distracted talking about pain, shortness of breath or constipation, he or she may not be focusing on fixing their disease.”
Given the limited time patients usually have during visits with their providers, some patients think they should just “tough it out,” Meier added. However, such an approach could lead to unplanned hospitalizations and severe pain.
“Patients tough it out until they physically can’t anymore, which is usually after 5 p.m., and then they call their oncologist’s office when they aren’t there and have to leave a message,” Meier said. “Those people then generally end up in the hospital. In fact, the major reason for unplanned hospitalization among patients with cancer is symptoms.”
Role of opioids
Given the prevalence of pain among cancer survivors and those undergoing treatment, effective pain control is necessary. Opioids have long been the mainstay of pain management.
Their use has come under considerable scrutiny over the last several years due to the opioid epidemic in the United States. Still, when properly monitored and given at correct doses, these drugs can be very effective for treating cancer-related pain and can significantly improve a patient’s quality of life during treatment.
As with any treatment, prescribing and monitoring opioids requires training and proper care, Meier said.
“We use drugs that have high toxicity and balance their benefit every day. Chemotherapy and corticosteroids are a great example,” Meier said. “Every doctor is trained on the risks and side effects of these drugs. Opioids are no different. Every drug we use has benefits and risks. The difference is that no one escapes from medical school without learning about the benefits and risks of chemotherapy or steroids.”
However, opioids can be dangerous if they fall into the wrong hands or if the patient begins abusing them. Prescribing them can be particularly tricky if a patient has a history of drug abuse.
“The people who get in trouble with opioids are usually those who had abuse problems in the past ... but that doesn’t mean we don’t treat them,” Susan LeGrand, MD, oncologist and palliative care specialist at Cleveland Clinic, told HemOnc Today. “Even patients with drug abuse problems should be pain-free if they have cancer. I may do urine tests more frequently and I will follow them more closely, but if they really have pain, how can we deny them these drugs that are proven to work?”
Physicians should not shy away from opioids because of bad press, Meier said.
“It’s remarkable to see so many put their head in the sand and avoid these drugs. It’s a training deficit,” Meier said. “What happens when these patients then go to the streets, where they can get drugs that are laced? It is not acceptable for a doctor to not treat pain effectively.”
Due to concerns that the stigma associated with opioids may prevent patients with cancer from receiving effective pain control, ASCO released a statement that outlines approaches to mitigate opioid abuse.
The report covers provider and patient education, prescription limits and use of prescription drug monitoring programs, and implementation of patient screening and assessment prior to opioid initiation.
“It is already widely acknowledged that too much pain goes untreated and, [although] not all patients with untreated pain require opioids, these agents remain an essential part of many pain treatment plans, especially among patients with cancer,” the report states. “On a global scale, there is mass unavailability of opioids, leading to untold amounts of needless suffering; world bodies have issued analyses and recommendations intended to balance the need for medical opioids with efforts to combat diversion.”
LeGrand said her institution uses opiate review panels that break down scenarios to help physicians and palliative care experts determine when and how best to use opiates.
“Only about 0.6% of patients with cancer overdose, but now patients are afraid of them because of all the press, and their pharmacists look at them funny when they try to fill a prescription,” LeGrand said. “We try to get people to fill them at our pharmacy so that doesn’t happen. We assure them that if they take them correctly, they are not going to get in trouble.
“I have found that if we used opiates to manage their pain so they can finish treatment, most patients come off the opiates just fine after that,” she added.
Future of the field
Demand for palliative care specialists is expected to increase as more evidence shows the effectiveness of early administration and the number of cancer survivors dealing with chronic pain climbs.
In a study published this year in Cancer, Hui and colleagues found the percentage of NCI-designated cancer centers with outpatient palliative care clinics increased from 59% in 2009 to 95% in 2018 (OR = 12.3; 95% CI, 3.2-48.2). However, the results showed no significant change from 2009 to 2018 in inpatient consultation teams (92% vs. 90%) or palliative care units (26% vs. 40%).
A workforce shortage could be one explanation for the lack of inpatient palliative care growth.
A study published last year in Health Affairs projects the number of trained palliative care specialists may shrink, leaving an unmet need among survivors dealing with physical or emotional pain.
“We wanted to better understand the life events that get in the way of people who would like to practice for a longer period of time, but stop because something happened,” lead study author Arif H. Kamal, MD, associate professor of medicine at Duke Cancer Institute, told HemOnc Today. “Some of the things that can happen include early retirement, death, sickness, leaving the workforce to take care of a sick family member, or burnout.”
The study showed half of palliative care physicians are aged 56 years or older, and they have a high burnout rate. About one-third of palliative care clinicians who participated in the study reported burnout, including 33.6% of physicians, 31.9% of nurses and 29.7% of social workers.
Among this group, nurses (OR = 1.61; 95% CI, 1.26-2.05) and social workers (OR = 1.92; 95% CI, 1.41-2.61) appeared more likely than physicians to leave their jobs.
Researchers used these data to predict an impending “workforce valley” as a result of a projected spike in retirements over the next 10 years that will not recover until 2045.
“There is going to be a large retirement spike over the next decade, and there isn’t an equal amount of fellowship growth projected over that time,” Kamal said. “The only way to get into palliative care is through a fellowship. The number of fellowships has grown over the last decade, but the sense we are getting now is that it is about to plateau. We wanted to know how long it will take to get back to the level we are at now, and it’s going to take a couple of decades unless there are policy changes.”
LeGrand agreed that part of the reason for the shortage is a lack of fellowship slots. More federal funding through Congress — which has been discussing this for several years — would help, she said.
“There’s also a perception that we don’t get paid well, and that’s true to a point,” she added. “People who do procedures make a lot more money than people who don’t. Our ‘procedure’ is a family meeting, which doesn’t pay much. It’s more difficult to get the high salaries, which I think hurts the industry.”
To help address the shortage, Meier and colleagues developed an online training program through Center to Advance Palliative Care (CAPC) that offers training, tools and technical assistance so health care providers who have not received training in palliative care can deliver specialized care to those with serious or life-limiting illnesses.
CAPC offers online training resources related to topics such as pain management, dementia care and best practices to advance care planning.
So far, more than 40,000 clinicians have completed over 320,000 CAPC courses.
“Our goal is to make palliative care everyone’s job,” Meier said. “There will never be enough palliative care specialists to deal with the exploding population of patients with cancer and survivors. It has to be the job of the front-line team, and that requires changing and access to consultation. We need to get to a point where everyone is comfortable talking to us and treating patients for their quality-of-life needs.” – by John DeRosier
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For more information:
Ethan Basch, MD, MSc, can be reached at email@example.com.
Arif H. Kamal, MD, can be reached at firstname.lastname@example.org.
Susan LeGrand, MD, can be reached at email@example.com.
Diane E. Meier, MD, FACP, FAAHPM, can be reached at firstname.lastname@example.org.
Donald Sullivan, MD, MA, MCR, can be reached at email@example.com.
Disclosures: Basch, Kamal, LeGrand, Meier and Sullivan report no relevant financial disclosures.