In an era with increased emphasis on bending the cost curve while increasing availability of targeted therapies for those with cancer, it can be difficult to strike the right balance between the art and the science of practicing high-quality oncology care. Perhaps just as difficult is the role of a regulating body or healthcare financer in providing the right incentives, policies, and authorization practices that allow clinical judgment while ensuring treatments are of high quality, evidence-based, and align with patient preferences. As cancer interventions become more effective and more complex, it is essential to create guardrails and incentives so that high-quality, patient-centered, cost-effective healthcare continues to be delivered.

Integrating palliative care into a treatment plan, preferably at the point of diagnosis, is crucial to delivering high-quality cancer care. Palliative care—which focuses on relieving the pain, symptoms, and stresses of a serious illness&mdash;has the ability to change the delivery and experience of healthcare for patients and caregivers. Many prospective studies have shown that when integrated early in the treatment process, palliative care is associated with an increase in quality of life, satisfaction with care, an improvement in symptom burden for both patients and caregivers,

 While the evidence for palliative care has been compelling, the integration of palliative care into cancer care is moving slowly, requiring considerable changes in paradigm and ideology for oncologists as well as shifts in process flows for their practices. As financing for cancer care begins to shift from fee-for-service (FFS) to value-based payments, payers have an opportunity to incentivize and regulate services provided to patients and their families that can support oncology teams to provide high-quality care transitions for cancer patients in any stage of disease—from point of diagnosis, through treatment, and nearing end of life or survivorship.

Economist Michael Porter defines value in healthcare as “patient health outcomes achieved per dollar spent,” emphasizing that the health outcomes achieved should focus on the patient’s preferences and defined measures for success, rather than strictly clinical effectiveness of treatment or survival rate.4 FFS cancer care does not factor in the quality of care provided and largely emphasizes impetus towards providing costlier and more aggressive services, thereby straining the healthcare system with the cost of experimental and targeted therapies and increasing the exposure of financial toxicity on patients and caregivers. Often, these treatments are in direct opposition to patient preferences.

 Even with health insurance, 10% of Medicare beneficiaries without supplemental insurance have been found to spend over 60% of their annual income on out-of-pocket expenses following cancer diagnosis.

 Twenty-five percent of participants in a Kaiser Family Foundation study reported using all or most of their savings dealing with cancer, while 33% of families reported a problem paying their cancer-care bills.

Despite the variability in quality of care and financial impact on patients and caregivers, advances in treatment and precision medicine have increased the number of cancer survivors in the United States.

 With growing urgency to balance the delivery of high-quality cancer care with costs, stakeholders—including the Centers for Medicare & Medicaid Innovation (CMMI)&mdash;are developing new financial and clinical models that emphasize value.

Earlier Attempts at Practice Transformation

When moving from clinical-imputed value of treatment to the patient-perceived value of cancer care, it is imperative to include additional domains to determine the overall value of a test, procedure, or treatment. Suffering in cancer patients can be derived from multiple factors, including uncontrolled symptoms, inadequate psychosocial support, financial toxicity, inadequate understanding of prognosis or treatment options, disregard for patient preferences for treatment or setting, or even prolongation of the dying process in terminal cases. In 2012, in an effort to mitigate this, the American Society of Clinical Oncology (ASCO) and the American Board of Internal Medicine Foundation launched, as part of the Choosing Wisely campaign, the top 5 list of tests and procedures in oncology care that should be questioned due to their failure to add further clinical value to the course of cancer treatment for a patient. The list was compiled with input from more than 200 oncologists and was used to promote communication among oncologists about best practices in delivering higher-value care. With 2 procedures highlighting improper management of pain and symptoms under Choosing Wisely, one recommendation from ASCO was earlier integration of palliative care into the treatment plan for those patients with advanced cancer.

In a retrospective review of this list and of adherence to the Choosing Wisely recommendations, it was found that not only was adherence highly variable, but that aggressive care did not decrease following implementation of these recommendations. Overall adherence to these measures ranged from 53% to 78%, with adherence being poorest for patients diagnosed with advanced cancers. With the palliative care measure in particular, adherence ranged from 60% at 90 days from the date of death to 89% at 14 days from the date of death.

 These results indicate that early integration of palliative care into cancer care is largely nonexistent, with referrals to hospice or palliative care coming consistently only in the last 2 weeks of life. This late-stage integration does not allow a patient or caregiver to experience the full effect of palliative care’s ability to alleviate suffering throughout the care continuum, and it suggests that aggressive, often unwanted, therapy is occurring until the patient is very near death.

Often overlooked as a hurdle to the integration of palliative care into cancer care is that graduate medical education includes only limited training in communication skills and care coordination. This training often does not continue once a new doctor selects a specialty, such as oncology. A considerable amount of evidence suggests that communication skills training in oncology practice has the ability to help healthcare professionals demonstrate feelings of empathy, address stressful and difficult situations, improve care transitions, and improve the quality of medical care and satisfaction for patients and families.

However, the receipt of such training is dependent upon the interest and initial comfort level of an oncologist to pursue and continue such training on their own time, as part of continuing medical education. This results in a workforce that is highly variable in its ability to communicate with patients and families about prognosis, treatment goals, or the clinical value of cancer treatment being administered.

Practice transformation is also limited by the variability in quantifiable process and outcome measures being used by all value-based purchasing programs, including those for cancer care. In a review of 129 publicly available value-based purchasing programs, the Rand Institute found that there is a high degree of variability in measures chosen for clinical appropriateness of care, patient preferences and satisfaction, and care centered on patient functional status.

The high level of experimentation in the area of value-based purchasing and bundled payments has generated mixed results on the effectiveness of these types of programs, further increasing the hesitance of providers to transform their practices to achieve stipulated targets. Among those successful programs, the elements determined to improve clinical outcomes included considerable financial incentives and alignment on quality, utilization, and performance targets, as well as provider training, engagement, and support for quality improvement initiatives and reporting requirements in the electronic health record (EHR).

Blending Incentives and Support to Integrate Palliative Care Into Oncology Practice 

The practice of integrating palliative care into oncology practice has been gaining considerable traction with the implementation of bundled payment programs for oncology and the introduction of the Oncology Medical Home (OMH) model.

 Most notable is the implementation of the Oncology Care Model (OCM) by CMMI, a demonstration project focused on improving the value of cancer care for Medicare beneficiaries. OCM and multiple other oncology bundled payment models being piloted throughout the country focus on the use of incentives and reporting criteria to align patients undergoing active cancer treatment to evidence-based pathways and additional support for care coordination. Performance is measured using cost, quality, and patient satisfaction targets.

Bundled payment programs for oncology, including OCM and OMH, require practice transformation (

 While these requirements may be possible to achieve by a larger oncology practice with considerable operational infrastructure and support, independent oncologists and smaller practices may have more difficulty implementing change. Because palliative care teams are focused on providing a team-based approach to care, care coordination, and a multi-dimensional care plan documenting treatment preferences, the integration of palliative care or a partnership with a palliative care team can be used to facilitate practice transformation and provide a higher degree of patient-centered care.

In addition to bundled payment reimbursement for providing oncology care, payers are experimenting with additional incentives and regulatory criteria to better integrate palliative care into oncology beginning at point of diagnosis. Incentives and regulation range from more standard approaches under value-based purchasing to those that are more innovative in nature, all with considerations that must be weighed prior to implementation.

One standard approach to incentivizing the integration of palliative care into oncology practice is the additional ability for oncology practices to achieve a higher percentage of shared savings or provider performance bonuses based on specific process and quality targets, focusing on this integration. For example, a proposed process measure by which to increase an incentive payout would be the documentation of a medical surrogate for all patients diagnosed with cancer or the documentation of Eastern Cooperative Oncology Group status, both of which are indicators of, or drivers for, early palliative care intervention. An example of a quality outcome measure would be the hospice referral rate or median length of stay (LOS) on hospice for patients with metastatic cancer. By incentivizing the median LOS on hospice, oncologists would need to engage the patient early and often regarding treatment preferences, including preferred place of death. Payers and providers alike must be cautious in measure selection, as not all patients will prefer hospice or wish to die at home, and this must be taken into account in reporting and calculation of incentive payouts.

Other approaches that have been proposed include additional reimbursement for palliative care, including bundled payments specifically for palliative care services that would align but not compete with the bundled payment for oncology. This approach allows for the oncologist and patient to receive an extra layer of support that focuses on pain and symptom management but does not compete with the payment made to the oncologist for care being provided. Models that embed or integrate a palliative care practitioner or team are most successful when incentives and outcomes are aligned and work together to minimize the impact of multiple providers and appointments on the patient and family undergoing treatment. Continuity and coordination of care should be at the center of treatment, with both the palliative care and oncology team remaining involved throughout the course of the disease, including through death. Some proposed payment methods reinforce this idea by continuing bundled payment reimbursement for the oncologist as the patient transitions to hospice. However, this is not ideal in practice transformation, as the goal of integrating palliative care into oncology practice is to ensure that all clinicians on the patient care team are operating at the top of their license. Continuing to have active management of the patient by an oncologist while the patient elects hospice does not encourage the best use of resources, but it is highly encouraged that the oncologist continues as part of the care team, monitoring and engaging with the patient even after hospice election.

As evidenced from the mixed results on the impact of value- based purchasing on clinical outcomes, financers and regulators of healthcare cannot depend solely on incentives, financial or otherwise, to transform clinical practice. To ensure that patients and families can receive high-quality care while being protected from unwanted medical treatment and financial toxicity, safeguards must be put in place to assist clinicians in making evidence-based decisions that align with the goals and preferences of patients with cancer and their caregivers. A majority of regulatory approaches proposed by payers to maintain value in cancer care and reduce the variability of care that is delivered are focused on the alignment of treatment protocols with evidence-based pathways as designated by the National Comprehensive Cancer Network’s Clinical Practice Guidelines. However, adherence to these guidelines does not outwardly encourage integration of palliative care into cancer care and often restricts providers from feeling like they can continue practicing the art of medicine.

One way to support providers in making decisions considering multiple domains of the patient’s care is through early and regular integration of palliative care into clinical treatment. Payers implementing an FFS or bundled payment model for oncology treatment often have prior authorization requirements. Integrating palliative care consultation requirement prior to authorization of any form of cancer treatment can ensure that the patient and caregiver remain at the center of the treatment plan, that they understand the prognosis and treatment options, and that they have documented goals of care. This is evidenced by studies showing that just the first palliative care consultation, in either an inpatient or outpatient setting, resulted in patients reporting an improved quality of life, improved satisfaction with the treatment plan and provider, improvement in physical and psychological symptoms, and reduction in financial toxicity.

 In addition, payers can require shared decision-making documentation and ongoing documentation of palliative care consultations at different points during treatment, including when a change is made in a treatment plan, upon beginning subsequent treatment, or following a cancer-related inpatient admission.

Other regulations that will further reinforce the integration of palliative care into oncology practice include the requirement for additional documentation in the patient’s EHR and the requirement of a care coordinator responsible for treatment team communication and care transitions. Both these criteria are requirements under the OCM and under many other OMH models being piloted. Areas necessary to be captured by the EHR include documentation of: the patient’s medical surrogate; the goals of care using a standardized assessment; and advance care planning documents, including an advanced directive and a Physician Order for Life Sustaining Treatment, where appropriate. Documentation of patient preferences and goals of care, as well as the implementation of a team-based approach to cancer care, become imperative with the intense needs of patients and caregivers facing a cancer diagnosis and the increasing complexity and cost of cancer care.

Undergoing practice transformation, including the integration of palliative care into oncology practice, is no small feat. It takes more than financial incentives and outcomes measures, including increased provider education, training, and support, for change to occur and be sustained over time. While regulations for oncology practice increase in an attempt to bend the cost curve and improve quality, palliative care can provide an extra layer of support for the patient and the provider alike, injecting the art of practice that keeps the patient at the center of care.

Torrie K. Fields, MPH, is senior program manager, Palliative Care, Blue Shield of California.

1. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. 

. 2014;383(9930):1721-1730. doi: 10.1016/ S0140-6736(13)62416-2.

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

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

3. Bakitas M, Lyons KD, Hegel MT, et al. The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions.

. 2009;7(1):75-86. doi: 10.1017/S1478951509000108.

4. Porter ME. What is value in health care? 

. 2010;363(26):2477-2481. doi: 10.1056/ NEJMp1011024.

5. Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S. Patient preferences versus physician perceptions of treatment decisions in cancer care. 

6. Narang AK, Nicholas LH. Out-of-pocket spending and financial burden among Medicare beneficiaries with cancer [published online November 23, 2016]. 

. 2016. doi: 10.1001/ jamaoncol.2016.4865.

/Kaiser Family Foundation/Harvard School of Public Health National Survey of Households Affected by Cancer. Kaiser Family Foundation website. http://kff.org/health-costs/ poll-finding/usa-todaykaiser-family-foundationharvard-school-of-public-2/. Published November 1, 2006. Accessed January 16, 2017.

8. Cancer treatment & survivorship: facts & figures, 2014-2015. American Cancer Society website. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/ cancer-treatment-and-survivorship-facts-and-figures/cancer-treatment-and-survivorship- facts-and-figures-2014-2015.pdf. Published 2014. Accessed April 30, 2017.

9. Schnipper LE, Smith TJ, Raghavan D, et al. American Society of Clinical Oncology identifies five key opportunities to improve care and reduce costs: the top five list for oncology. 

. 2012;30(14):1715-1724. doi: 10.1200/JCO.2012.42.8375.

10. Ramsey SD, Fedorenko C, Chauhan R, et al. Baseline estimates of adherence to American Society of Clinical Oncology/American Board of Internal Medicine Choosing Wisely initiative among patients with cancer enrolled with a large regional commercial health insurer. 

. 2015;11(4):338-343. doi: 10.1200/JOP.2014.002717.

11. Barth J, Lannen P. Efficacy of communication skills training courses in oncology: a systematic review and meta-analysis. 

. 2011;22(5):1030-1040. doi: 10.1093/annonc/mdq441.

12. Damberg CL, Sorbero ME, Lovejoy SL, Martsolf GR, Raaen L, Mandel D. Measuring success in health care value-based purchasing programs: findings from an environmental scan, literature review, and expert panel discussions. 

13. Sprandio JD. Oncology patient-centered medical home. 

. 2012;8(Suppl 3):47s-49s. doi: 10.1200/JOP.2012.000590.

14. Oncology care model. CMS website. http://innovation.cms.gov/initiatives/oncology-care/. Updated April 7, 2017. Accessed April 30, 2017.

15. Waters TM, Webster JA, Stevens LA, et al. Community oncology medical homes: physician-driven change to improve patient care and reduce costs. 

. 2015;11(6):462-467. doi: 10.1200/ JOP.2015.005256.

16. Newcomer LN, Gould B, Page RD, Donelan SA, Perkins M. Changing physician incentives for affordable, quality cancer care: results of an episode payment model. 

 2014;10(5):322- 326, doi: 10.1200/JOP.2014.001488.

17. Davis MP, Bruera E, Morganstern D. Early integration of palliative and supportive care in the cancer continuum: challenges and opportunities. 

. 2013:144-150. doi: 10.1200/EdBook_AM.2013.33.144. Review.

Articles

Evidence-Based Oncology

As cancer care moves to payment focused on improving value, payers are more often using regulation and incentive to improve the integration of palliative care into oncology practice.

The Carrot or the Stick? Integrating Palliative Care Into Oncology Practice

— Ellen Matloff, MS, CGC, CEO, My Gene Counsel 

Every cell in our body contains 23 pairs of long, thin structures called chromosomes. We inherit 1 chromosome of each pair from our mother, and the other from our father. Most mutations in the BReast CAncer susceptibility genes (

) are inherited from the mother or father, rather than representing new (or de novo) genetic changes. This means that at some point in time, the DNA of a relative changed or mutated and that genetic change has been passed down through the generations.

Our genetic information is stored on our chromosomes in tiny units called genes. We have tens of thousands of genes that help code for everything about our bodies: from eye color to hair color to disease risks. We all have 2 copies of 

, 1 on each of our two #17 chromosomes. A woman who inherits 1 mutation in 

 is at an increased risk of developing both breast and ovarian cancer, while a man who carries a 

 mutation is at an increased risk for breast and prostate cancer. 

is located on chromosome 13, and we all have 2 copies of this gene. Women with 1 

mutation are at an increased risk of developing breast, ovarian, and pancreatic cancer while men who carry 1 

mutation are at an increased risk of breast, prostate, and pancreatic cancer. 

No one could believe my sister Jan’s ovarian cancer was an early stage, contained cancer. How could Gilda Radner’s grapefruit-sized ovarian cancer be stage IV and Jan’s grapefruit-sized ovarian cancer be stage I? Another surprise was that Jan’s final pathology indicated, besides stage IC ovarian cancer, that she also had stage 1B uterine cancer. Her surgeon recommended she undergo 6 rounds of chemotherapy to make sure all the cancer was gone.

A year later, in the fall of 2009, life was slowly getting back to normal for my sister and our family. When Jan found out there was an ovarian cancer conference in Las Vegas, she had a feeling she should go to learn more. Her take-home message from the conference was: “Get genetic testing for B-R-C-A mutations!” Why? Because she learned she had many red flags:

		She had 2 primary cancers at the same time (uterine cancer and ovarian cancer)

		There was a family history of breast cancer on our dad’s side of the family

With her newfound knowledge, my sister made an appointment with a certified genetic counselor at the hospital where she was treated.

 positive. All that I could think about was my sister Amy. Then, the genetic counselor informed me that ALL my siblings needed to be tested, not just my sister, but my brothers, too. 

Although I didn’t know exactly what genetic testing would mean for me specifically, I knew that the outcome of my own genetic testing results was going to have an impact on my future. So, I started maintaining a journal, not just for myself, but also for my kids and for future generations of my family. Moreover, I felt in my gut that there was an opportunity for me to help others gain insight from my experience.

As a strong woman, I felt if I could get actionable, helpful information regarding my health, I needed to get it. As a mom, I felt a parental responsibility to not bury my head in the sand, to meet with a certified genetic counselor.

When women take care of their health, they become their own best friend. 

About 3 weeks after meeting with a certified genetic counselor and having my blood drawn for genetic testing, I discovered I was positive for a 

 gene mutation, too. The certified genetic counselor referred me to see a medical oncologist who specialized in high-risk patients. I was immediately compelled to share my genetic testing results in an e-mail to a few close friends and, of course, to my family, especially since many of them could be at risk, too. This is what I wrote:

Unfortunately, I tested positive for the 

 gene mutation #5385 (also known as #5382), the same gene mutation as Jan. It’s 1 of the 3 

 mutations associated with people of Ashkenazi Jewish descent. It’s most definitely what dad’s mom Lillian had and eventually died from...

Jon and I will meet with a medical oncologist who specializes in genetic patients at high risk for breast and ovarian cancer in the next few weeks. I may have some major decisions to make regarding my female reproductive organs. 

— Ellen Matloff, MS, CGC, CEO, My Gene Counsel

There are 3 specific mutations deemed “founder mutations” that are more common in people of Ashkenazi Jewish descent. Approximately 1 in 43 Ashkenazi Jews carry a BRCA mutation. 

Jon and I didn’t thoroughly understand exactly what having this genetic mutation meant for me, but we did realize that this information was about to lead my life, our marriage, and our family down a different path. As I actively began researching 

, neurosis kicked in and I found myself constantly thinking about my breasts. A few times every day I would feel my breasts, checking them for lumps. All the visuals in my life suddenly became about my breasts: making breakfast, 2 eggs sunny side up; driving in my car I’d see a bicyclist, the 2 wheels on the bicycle riding down the street; change for a dollar at the store, 2 quarters. Any image with 2 circles and breasts was all I could see.

— Siddhartha Mukherjee, MD, DPhil, in his book, 

 mutation (or any other hereditary cancer syndrome) is fundamentally changed by that knowledge—and yet it remains just as fundamentally uncertain. For some women, the genetic diagnosis is all consuming. It is as if their lives and energies are spent anticipating cancer and imagining survivorship&mdash;from an illness they have not yet developed. A disturbing new word, with a distinctly Orwellian ring, has been coined to describe these women: “previvors”&mdash;pre-survivors...the prophylactic treatments…mastectomy, hormonal therapy&mdash;all entail physical and psychological anguish and carry risks in their own right. 

My annual checkup would now include a transvaginal ultrasound, even though transvaginal ultrasounds aren’t 100% effective at detecting ovarian cancer. In addition, I would alternate every 6 months having a mammogram with a breast ultrasound and breast magnetic resonance imaging. I was aware it was important to get these tests done, but nonetheless, I had major anxiety. Knowing my genetic status was so all-consuming that I wished I could just “check out” for several weeks while processing all the information and hook myself up to a Prozac drip. However, I was a mom and there was the matter of taking care of the kids, so checking out for me was not an option.

My medical oncologist, Elisabeth McKeen, MD, FACP, gave me a rundown on my situation:

		Medication: tamoxifen (lacks sufficient research on whether it is good for hereditary cancers)

		Prophylactic surgery. Removing breasts reduces a person’s cancer risk by 95%, and my doctor believes it’s more likely 98% when you have a surgeon who is aggressive in removing breast tissue. Plus, it’s better to place breast implants behind the muscle, so any future issue (cancer) is much easier to feel/detect.

		Enhanced surveillance is, unfortunately, not effective at this juncture, and it is highly recommended that 

 carriers have their ovaries removed between ages 35 to 40 or after childbearing is complete. My situation warranted a full hysterectomy as my sister Jan also had uterine cancer, which meant that I now had a “family history” of uterine cancer in a first-degree relative. Removing ovaries before natural menopause also reduces your breast cancer risk by 50%.

		There may be some benefit with the use of birth control pills.

patients with melanoma and recommends an annual dermatological exam and formal eye exam, as melanoma can also manifest in the eye.

My doctor admits that doctors may not be well versed or have any knowledge about 

 gene mutation develop prostate cancer and advises BRCA1-positive men to start full prostate exams by age 40.

The protocol demands that I need to see a psychologist, as there are ramifications to undergoing these prophylactic surgeries. My daughter also needs to consider certified genetic counseling and genetic testing by age 25. At 25, 

-positive women need to consider starting enhanced breast screenings. My son needs to consider genetic counseling and genetic testing by age 40 as that is when he would need to start full prostate exams.

The therapist I was required to see before surgery said one thing, which stuck with me: “Make sure you are at peace with your decision—whatever that is. Once it is done, it is done. Once they roll you into surgery, there is no going back. You have to make sure you are at peace with whatever you decide.”

I was told my individual lifetime risk for ovarian cancer was as high as 50%. For me, I could not gamble with the silent thunder of that disease, especially since there are still no accurate surveillance methods to detect it. I knew deep inside that my sister was lucky. I couldn’t play Russian roulette with my life. I had to do what was in my best interest—remaining breathing.

In the pre-op area awaiting my oophorectomy and hysterectomy, the gravity of what I was about to do hit me hard. I was not going to be able to have any more children. The thought of jumping up out of the bed and running out of the hospital more than crossed my mind. However, something was holding me down. Both a physical and emotional weight, an arm on my thigh, was not letting me get up, and a voice was keeping me there saying I needed to do this now, it was not a good idea for me to wait. Although she died at age 33 in 1934, my grandmother Lillian’s presence was right there in the room. Her message to me was loud and clear:

This is what you need to do to be here, Amy. You need to do this to live. Do what I couldn’t...and go save your life.

Amy Byer Shainman, otherwise known as @BRCAresponder on Twitter and social media, educates others about hereditary cancer via many social media platforms and national media placements. As a passionate advocate, Shainman shares her own 

 story, offers support, and emphasizes the importance of certified genetic counseling in the genetic testing equation.

Reprinted with permission from Archway Publishing, a division of Simon & Schuster.

Amy Byer Shainman narrates how the knowledge that she was BRCA1 positive led to her decision to undergo prophylactic surgery.



Do What I Couldn't…and Go Save Your Life

Globally, the need for integrated palliative care has never been greater. Populations are aging, and rates of terminal non-communicable diseases continue to progress. Approximately half of all patients with cancer, for example, will eventually succumb to their disease—nearly one-third of cancer deaths happen within 6 months of diagnosis.

 Organizations, such as the National Academies of Science, Engineering, and Medicine (formerly Institute of Medicine) and the American Society of Clinical Oncology, recommend full integration of palliative care as a routine component of comprehensive cancer care.

 Integrated palliative care—which encompasses coordination of care for multiple severe, complex conditions; behavioral health concerns; and end-of-life care&mdash;can provide symptom control, psychosocial support, and coordinated transitions of care for patients and their families.

Yet, as Atul Gawande, MD, MPH, documented in his 2010 book, 

, best practices and innovations in creating or maintaining quality of life (QOL) for individuals nearing the end of their lives, or faced with life-threatening conditions, are not readily accessible to those who need them most.

Despite ongoing efforts to incorporate palliative care concepts and training in medical and nursing education,

 barriers to access persist, and palliative care remains an insufficiently researched topic.

 The World Health Organization estimates that 19 million adults across the world are in need of palliative care, the majority in low- and middle-income countries, but that in many areas, the level of palliative care provision and access to services remain extremely limited and clinicians often lack the capacity to provide care to all in need.

In the United States, large regional disparities in access to palliative care exist, especially in rural areas and among medically underserved populations.

 The number of palliative care specialists falls far short of demand, exacerbating geographic, racial, and economic disparities in access.

Culture- and country-specific assumptions, perceptions, and laws about palliation, pain relief, and drug prescription/use are also significant impediments to effective palliative treatments.

To overcome the gap between the growing need and the limited resources for palliative care around the globe, a transformative educational intervention is necessary. Such an innovation must effectively disseminate the principles, best practices, and applications of palliative care concepts for the frontline healthcare practitioners who serve communities most in need of that care. For the past 14 years, Project ECHO (Extension for Community Health Outcomes) has leveraged its innovative technology-enabled model for healthcare education to address global disparities in healthcare access for complex chronic conditions such as hepatitis C, HIV, tuberculosis (TB), and opioid use disorder. The ECHO model, which fosters and sustains communities of practice that bring together primary care clinicians with interdisciplinary specialist teams for ongoing case-based learning, mentoring, and sharing of best practices, also has the potential to tip the scales of the world’s integrated palliative care crisis. This article describes the work of 7 of Project ECHO’s replicating partners from around the world who are implementing the ECHO model to address the knowledge gap that underlies this crisis.

Project ECHO improves healthcare workforce capacity and increases access to specialty care for the world’s rural and underserved populations. A low-cost, high-impact intervention, Project ECHO links expert multidisciplinary specialist teams with frontline community healthcare providers via ongoing videoconference-enabled sessions. In these teleECHO clinics, specialists share their expertise and community providers share their experience with individual patients via case-based learning and telementoring. Overall knowledge is enhanced as cutting-edge research, treatments, and best practices from academic and research centers are tested and refined through ongoing discussion and application within community- and culturally-specific contexts on the ground. Participating community providers do not need any additional equipment to participate other than a laptop enabled with internet and a videocamera. The ECHO model builds and strengthens communities of practice through latitudinal learning and the free exchange of knowledge: all participants teach, and all participants learn from one another. Community providers develop the capacity to care for patients with complex conditions where they live.

Project ECHO benefits not only patients in need of care, but also the providers who care for them. The communities of practice built through regular teleECHO clinics reduce professional isolation for providers located in rural areas, building networks and new opportunities for collaboration.

 These additional resources and opportunities support clinic staff retention and increase professional satisfaction.

 The peer support and mentorship that teleECHO clinics provide enable critical incident stress debriefing and self-care strategies, reducing provider burnout.

Project ECHO moves knowledge, not patients (

). It provides increased access to high-quality healthcare and reduces travel to, and wait times at, centers of medical expertise. The ECHO model, originally designed and implemented in 2003, addressed the lack of hepatitis C care across rural New Mexico. Within 18 months of establishing the first teleECHO clinic sessions, which connected primary care providers and community health workers around the state with a multidisciplinary specialist team at the University of New Mexico (UNM), wait times at the UNM hepatitis C clinic had dropped from 8 months to 2 weeks. Rural providers reported a greater sense of self-efficacy and confidence in treating hepatitis C patients in their own communities. Subsequent research demonstrated that the cure rate of those providers was the same as that in the UNM hepatitis C specialty clinic.

Fourteen years later, Project ECHO has grown from 1 program serving rural New Mexico to over 110 partners in over 20 countries addressing over 55 conditions. The ECHO model has proved effective for hepatitis C treatment in the US Department of Veterans Affairs,

 for training primary care providers in the provision of buprenorphine for treatment of patients with opiate use disorder,

 and improvements in clinician geriatric mental healthcare knowledge/treatment and decreases in emergency room costs for their patients with mental health diagnoses.

 Providers participating in teleECHO clinics regularly report increased professional satisfaction and a reduced sense of isolation, along with improved self-efficacy and capacity to care for their patients.

 Globally, the ECHO model is being deployed in Europe, Asia, Africa, and India to expand frontline health workers’ capacity to care for underserved populations across complex chronic conditions like HIV, cancer, hepatitis C, multidrug-resistant TB, and behavioral health.

Project ECHO provides a unique model to address global disparities in access to palliative care. The ECHO model has been replicated by early adopters to expand, support, and disseminate knowledge of primary palliative care to providers working with rural and underserved populations, enabling them to address the complex needs of their patients with advanced serious illness. In its focus on ongoing mentorship and development of multidisciplinary communities of practice, the ECHO model is particularly suited to palliative care, which at its best involves care teams supporting patients and their families in the transition from medical support for a specific condition to a focus on overall QOL. Each of the brief narratives below recounts the experience of implementing ECHO for palliative care from the perspective of 7 of our replicating partners (also, see 

The UNM Hospital started the first palliative care teleECHO clinic in 2011. Pre- and post-surveys of participants have demonstrated improved self-efficacy (

 = .0073) and greater knowledge of pain and non-pain symptom management with participation (

 In the fall of 2017, a new session of the UNM Palliative Care ECHO will begin, this time with a focus on primary palliative care for non-specialists of all disciplines. In preparation for this next phase, members of the teleECHO clinic specialist team are traveling around the state to conduct needs assessments and discuss potential benefits of this clinic with nonspecialists.

Northern Ireland Hospice first implemented ECHO for palliative care in 2014 under the leadership of medical director Max Watson, MD. Community hospice nurses (CHNs) who were employed reported that ECHO created a safe space for those working in isolation to talk about and learn from failures and successes in their own work, and to support each other. The original 6-month pilot was evaluated using a mixed-methods prospective longitudinal cohort study involving 28 CHNs. Mean knowledge scores improved significantly, as did overall self-efficacy scores. Seventy percent of CHNs reported that the technology used in ECHO had given them access to education that would have been hard to access due to geography. The study provided evidence for Project ECHO-connected networks of CHNs as an affordable solution to the United Kingdom’s growing need for hospice and palliative care. The Northern Ireland Hospice has become an ECHO superhub, and in partnership with the Health and Social Care Board of Northern Ireland, has launched 19 different teleECHO clinics, many of which address integrated palliative care.

Northern California-based ResolutionCare launched a palliative- care-to-primary-care teleECHO pilot program in September 2015. Working with Partnership HealthPlan of California, a non-profit healthcare organization contracted with the State of California to administer Medi-Cal benefits, ResolutionCare implemented the ECHO model to provide hospice and palliative medicine training to primary care teams at 10 federally qualified health centers throughout Northern California.

 In addition to using ECHO for developing palliative care curricula and networking community partners with physicians and other healthcare professionals, ResolutionCare’s pilot explores value-based systems of payment. After April 2017, when California Senate Bill 1004 on Palliative Care goes into effect, standardizing value-based systems statewide, the ResolutionCare’s pilot program will become an ongoing initiative to address California’s exploding demand for palliative care.

The palliative care service of Montevideo’s Hospital Maciel in partnership with Universidad de la República, started a palliative care teleECHO clinic in August 2015. Prior to this, the ECHO model had been implemented to train hepatitis C providers in Uruguay. The palliative care teleECHO clinic for adults created an interdisciplinary network of health professionals who assist patients in advanced or terminal stage of their disease throughout the country. Multidisciplinary specialist teams collaborate with providers in comprehensive patient and family assistance, collective decision-making, and a holistic, QOL approach to patient care. Watson, of ECHO Northern Ireland, traveled to Uruguay during the initiative’s planning stages to engage local providers, share best practices for utilizing the ECHO model for hospice and palliative care, and learn about how palliative care is practiced in Latin America. Watson’s mentorship at the beginning of the teleECHO palliative care clinic in Uruguay further demonstrates the collaborative potential of the global ECHO network.

In May of 2016, the Department of Palliative Care, Rehabilitation, and Integrative Medicine at the University of Texas MD Anderson Cancer Center launched its Palliative Care ECHO Telementoring Program (ECHO PACA) in collaboration with clinicians in South Africa, Zambia, Kenya, Nigeria, Ghana, Brazil, and Mozambique. ECHO PACA’s goal is to build a network of palliative care experts in Africa, connecting experts and providers through the ECHO model to provide increased access and quality palliative care for patients with life-limiting cancer diagnoses.

The Alaska Native Tribal Health Consortium (ANTHC) in Anchorage is America’s largest and most comprehensive Native-owned health services organization. It serves over 150,000 Alaska Native people statewide, representing 229 federally recognized tribes. Through the Alaska Native Medical Center, ANTHC began offering oncology-based comprehensive palliative care services in October 2015 and launched a palliative care teleECHO clinic in the spring of 2017, extending palliative care services to inpatient, outpatient, and rural settings across the Alaska Tribal Health System. Project ECHO will enable ANTHC and tribal partners to utilize existing resources to support patients, families, providers, and communities throughout Alaska, providing support and mentorship for the development of community-based palliative care resources. The goal of the ANTHC Palliative Care Project ECHO is to establish regional palliative care resource teams throughout the state to offer primary palliative care support to patients and families facing advanced serious illness.

Trivandrum Institute of Palliative Sciences 

In India, the Trivandrum Institute of Palliative Sciences (TIPS) implemented the ECHO model for palliative care in January of 2017. This teleECHO clinic aims to strengthen the palliative care knowledge and capacity of practitioners from India and neighboring countries (including Nepal, Bhutan, and Bangladesh). TIPS conducts its teleECHO clinic with technological support and guidance from the Project ECHO superhub team based in Delhi, further evidence of the capacity of the global ECHO network to provide mentorship and support across regions and conditions.

The ECHO Institute in Albuquerque, New Mexico, is also leading a Palliative Care ECHO Collaborative, a broader community of practices that connects all ECHO replicating partners working in palliative care to share best practices and strategies for addressing the global palliative care crisis. The collaborative is exploring opportunities to engage in collective research and the development of a palliative care curriculum and certification that can be standardized for primary care clinicians and other healthcare providers around the world. Delivered through the culturally adaptive ECHO model, this curriculum and certification could then be effectively modified by palliative care ECHO teams working in diverse geographic areas to suit the specific needs of participants.

The network of palliative care practitioners, researchers, and interested partners built by the Palliative Care ECHO Collaborative would also shape the development of best practices and serve as a catalyst to raise awareness about global palliative care needs. Such conversations are already well underway: in India, for instance, the ECHO model has become useful for conversations with the oncology community regarding the scope of palliative care across the cancer spectrum. India’s National Cancer Grid, which connects 106 cancer centers,28 has included palliative care experts in its ECHO virtual tumor board. The engagement and dialogue among participants opens up possibilities for mutual learning and further collaborations in transforming quality of care provided and perceived.

There is growing national and international interest in palliative care but a recognized inability for specialists to provide such care to the patients and families who need it most. Project ECHO is an effective solution to the problem of disseminating the skills and expertise of centralized palliative care specialists to the frontline primary care providers working in geographically, culturally, and economically diverse communities.

The ECHO model can assist healthcare providers, medical staff, and community members to acquire new skills, competencies and best practices in palliative care. By working with administrators and community leadership, efforts to improve the QOL and coordination of care for patients with advanced serious illness will also help identify and address local, national, and regional gaps and needs in healthcare resources, services, and support. As the Project ECHO network in palliative care grows, so does the global stock of palliative care knowledge and best practices, as partners continue to teach and learn from one another in ever-widening communities of practice (

Director of the ECHO Institute and distinguished professor, University of New Mexico, 1 University Blvd, Albuquerque, NM 87110.

Program planning manager, University of New Mexico, 1 University Blvd, Albuquerque, NM 87110.

Strategic support manager, University of New Mexico, 1 University Blvd, Albuquerque, NM 87110.

Division chief palliative care and associate professor of internal medicine, University of New Mexico, 1 University Blvd, Albuquerque, NM 87110.

Visiting professor, University of Ulster and honorary senior lecturer, Queens University Belfast, 10 Moy Road, Dungannon, Tyrone, UK, BT716BS.

Associate professor, Department of Palliative Care and Rehabilitation Medicine, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX.

Executive director, ResolutionCare, 2440 23rd Street, Suite B, Eureka, CA 95501.

Alaska Native Tribal Health Consortium, 3900 Ambassador Drive, Anchorage, AK.

Project director, Trivandrum Institute of Palliative Sciences, Arumana Hospital, Vallakadavu P.O, Thiruvananthapuram — 695 008, India.

Professor, Universidad de la República, Montevideo, Uruguay. Clinical ECHO Coordinator of Adult Palliative Care in Uruguay. 25 de Mayo 172, Montevideo, Uruguay, CP 11000.

Clinical ECHO coordinator of adult palliative care in Uruguay. 25 de Mayo 172, Montevideo, Uruguay. CP 11000.

Physician, Palliative Medicine Service of the Maciel Hospital, Montevideo, Uruguay. 25 de Mayo 172, Montevideo, Uruguay. CP 11000.

Grant: 5R24016510 from the Agency for Healthcare Research Quality “Expansion of Rural Health Care Research Infrastructure through the ECHO Model”; Bristol-Myers Squibb Foundation “Project ECHO for Cancer Care: Reducing Disparities in Cancer Care”; General Electric Foundation “Expanding the ECHO Model to Improve Healthcare Efficiency and Quality in Federally Qualified Healthcare Centers”

1. Hui D, Elsayem A, De la Cruz M, et al. Availability and integration of palliative care at US cancer centers. 

. 2010; 303(11):1054-1061. doi: 10.1001/jama.2010.258.

2. Ferris FD, Bruera E, Cherny N, et al. Palliative cancer care a decade later: accomplishments, the need, next steps—from the American Society of Clinical Oncology. 

. 2009;27(18):3052-3058. doi: 10.1200/JCO.2008.20.1558.

3. Meyers FJ, Linder J, Beckett L, Christensen S, Blais J, Gandara DR. Simultaneous care: a model approach to the perceived conflict between investigational therapy and palliative care. 

4. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. 

. 2008;300(14):1665-1673. doi: 10.1001/jama.300.14.1665.

5. Higginson IJ, Finlay IG, Goodwin DM, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? 

Being Mortal: Medicine and What Matters in the End

7. Ahia C, Blais C. Primary palliative care for the general internist: integrating goals of care discussions into the outpatient setting. 

This article provides insight on the work of 7 of Project ECHO’s replicating partners from around the world who are implementing the ECHO model to address the knowledge gap that underlies integrated palliative care crisis.

Project ECHO: An Effective Means of Increasing Palliative Care Capacity

Research Tests Decision Support Technology for Guiding Cancer Screening Choices 

The results of a new study indicate that a technology-based intervention could help patients make informed decisions about cancer screening. The study, published in 

, tracked the outcomes from the implementation of a decision support module at 12 practices serving over 55,000 patients. The module was embedded in the online portals of 11,458 patients who faced an upcoming decision on breast, colorectal, or prostate cancer screening.

An initial assessment within the module gathered important information, such as patients’ concerns with cancer screening, desired levels of decision support, decision-making style, and optimal method of receiving information on the recommended screening options. Using this feedback, the module created a tailored page that provided the patient’s preferred amount of relevant information using words, numbers, pictures, or stories.

Patients could then indicate whether they had made up their minds on their next steps, and if so, whether they wanted their physician to receive a summary of their decision preferences that included discussion points, patient questions, and the preferred balance of decision making between the patient and the provider. Questionnaires collected feedback on the module from the patient and the clinician after the office visit during which the results were discussed.

Of the 11,458 patients invited to use the module, only 903 of the 2355 who started completed it. Around a quarter of module users clicked on at least 1 educational resource, and patients each accessed an average 3.5 resources. Patients most commonly sought information on options for getting screened (70.8%), what screening test works best (49.8%), and potential complications from screening (45.7%).

Patients who forwarded the decision summary to their physicians were more likely discuss the screening at their next visit, and 80.9% said the conversation helped reduce their fears or worries about screening. A majority of patients agreed that the module was easy to complete and understand, and sizable proportions reported that it had improved their knowledge before the office visit (48.1%) and got them more involved in the screening decision (47.7%). Finally, patients who had completed the module were significantly more likely to undergo screening within 3 months than those who had not started or completed it.

According to the researchers, these findings indicate that technology-enabled decision support initiatives are a feasible way to empower patients in decision making and help improve communication between patients and physicians. They noted that invitation response rates and module completion levels were relatively low, but could potentially increase with better workflow integration. This was also a self-selected sample without a control group, so future trials will need to be randomized and controlled to more fully evaluate the role of decision support technologies in cancer screening and other health choices.

The researchers acknowledged that implementing new technologies within practice workflows will not be an easy task, but if “future research confirms the benefits of this approach—more informed patients, better decisions, and wiser use of encounter time&mdash;the return on investment could offset the implementation costs and improve care.”

Krist AH, Woolf SH, Hochheimer C, et al. Harnessing information technology to inform patients facing routine decisions: cancer screening as a test case. 

. 2017;15(3):217-224. doi: 10.1370/afm.2063.

Lowering the Risk of Venous Thromboembolism With Ovarian Cancer Treatment 

Twenty-five percent of patients receiving neoadjuvant chemotherapy treatment for ovarian cancer develop venous thromboembolism (VTE), according to the results of a new study published in the journal 

Patients with ovarian cancer have historically been associated with developing VTE. Significant risk factors include obesity, older age, advanced disease stage, debulking surgery, and use of anticoagulants. Development of this hematological condition can, in turn, lead to a poor prognosis or a reduced quality of life for patients. Although postoperative efforts have focused on reducing the incidence of thromboembolic events in women with ovarian cancer, the 4-week standard treatment that is currently offered may not be sufficient to reduce the long-term risk.

With the hypothesis that neoadjuvant chemotherapy increases the incidence of VTE, the authors of the current study conducted a retrospective analysis among 112 patients with ovarian cancer who were being treated with neoadjuvant chemotherapy. Thirteen patients who presented with a symptom of VTE were disregarded prior to analysis. Thirty of the 112 patients at risk (26.8%; 95% CI, 19.3%-35.9%) experienced a VTE. Thirteen patients (11.6%; 95% CI, 6.8%-19.1%) experienced this hematological event during the neoadjuvant chemotherapy treatment, 6 (5.4%; 95% CI, 2.4%-11.5%) developed the condition postoperatively, and 11 (9.9%; 95% CI, 5.5%-17%) developed VTE during adjuvant chemotherapy.

Based on these findings, the authors confirm that neoadjuvant chemotherapy positions patients with ovarian cancer at an extremely high risk of developing VTE. Highlighting the importance of prophylactic treatment in preventing the incidence of VTE, they note that prophylaxis could improve survival in this patient population. This is especially important because of the rapidly growing population of patients with ovarian cancer who are administered neoadjuvant chemotherapy in the United States, they write.

1. Greco PS, Bazzi AA, McLean K, et al. Incidence and timing of thromboembolic events in patients with ovarian cancer undergoing neoadjuvant chemotherapy [published online May 5, 2017]. 

. 2017. doi: 10.1097/ AOG.0000000000001980.

2. Pant A, Liu D, Schink J, Lurain J. Venous thromboembolism in advanced ovarian cancer patients undergoing frontline adjuvant chemotherapy. 

. 2014;24(6):997-1002. doi: 10.1097/IGC.0000000000000164.

Pembrolizumab Plus Chemotherapy Approved for Metastatic Nonsquamous NSCLC 

Tumor response rate and progression-free survival (PFS) were the benchmarks that helped pembrolizumab (Keytruda) gain accelerated approval as first-line treatment for metastatic nonsquamous non—small cell lung cancer (NSCLC) in combination with pemetrexed (pem) and carboplatin (carbo), irrespective of PD-L1 expression.

An update on the latest developments in clinical and healthcare services research in oncology.

June 2017

The Carrot or the Stick? Integrating Palliative Care Into Oncology Practice

Do What I Couldn't…and Go Save Your Life

Project ECHO: An Effective Means of Increasing Palliative Care Capacity

Medical World News, June 2017

AJMCtv® Interviews, June 2017

The Transition to Integrate Palliation in Cancer Care

Transitions of Care in Patients With Cancer

Transitions in Cancer Care - Moving From Crisis Intervention to Care Planning and Management

Conference Coverage: COA

Conference Coverage: NCCN