The nature of a cancer diagnosis and subsequent treatment is that patients are not only faced with the challenges of undergoing complex, often intensive, treatments, but also with the many changes in their care setting, providers, ancillary services, and goals of care that may occur over the course of their cancer journey. Unlike diseases like community-acquired pneumonia, in which care is limited to a discreet episode, the longitudinal nature of care needs for patients with cancer requires a different, more comprehensive system of care delivery. This, by necessity, requires that our system deliver care throughout the numerous transitions that our patients experience. High-quality cancer care can only occur when these “transitions in care” are delivered in a prospectively planning, systematic, patient-centered way. There are diverse arrays of transitions of care that mark the cancer care experience: inpatient to outpatient care, pediatric to adult care, therapy with curative intent evolving toward therapy directed towards palliation. 

Throughout these transitions of care the stakes for the patient are very high; we have both an opportunity to contribute substantively to the patient-centeredness of care or to undermine the delivery of effective care. In this issue of 

™), we attempt to illustrate some of these episodes of care and highlight the opportunities for improving the effectiveness of care through these transitions.

One example of an immensely important transition of care for patients is that of ensuring the early integration of palliative/supportive care into post-cancer diagnosis treatment planning. However, the early use of palliative care is often a missed opportunity. There is a common misperception that palliative care solutions are only germane to patients at the end-of-life, thus initiation of these services are often delayed until patients are referred for hospice or comfort care services.

 Cancer patients have an extraordinary number of care needs that are frequently under recognized and therefore unaddressed within our current care delivery system.

The World Health Organization defines palliative care as:

An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Given the breadth of clinical skills that palliative care physicians can bring to the patient, this set of care services has the ability to complement the skills of the medical oncologist/hematologist in serving unmet patient care needs through treatment and survivorship.

The unique expertise of palliative care physicians can, in fact, help us bring increasingly more patient-centeredness to our care delivery system. In a study comparing the impact of an early versus delayed model of palliative care referral for patients with non—small-cell lung cancer, there was no difference in the total number of chemotherapeutic regimens used per patient in either group, but there was a significant improvement for the early consultation group in the use of chemotherapy in the last 60 days of life, a longer interval between the last chemotherapy regimen and death, and a higher proportion of patients who survived for more than 1 week under hospice care.

Palliative care represents only one of the many opportunities for mindful, value-added care transitions that can enhance the lives of our patients. The idea of carefully aligning expertise and clinical skills, delivered through carefully orchestrated transitions of care, represent a major advance in cancer care. In this issue of 

™, we explore a number of these key opportunities to improve the experience of patients affected by cancer. Sanjeev Arora, MD, and colleagues review the ECHO model of palliative care that brings together primary care physicians and expert specialists for transition- of-care mentoring and communication of best practices. Brandon R. Shank, Phuoc Anh Nguyen, and Emily C. Pherson provide an overview of the role that pharmacists may serve in enhancing the effectiveness of transitions of care for cancer patients in ways that improve medication safety. Amy Byer Shainman shares her experience as a cancer “previvor” in navigating transitions in care for patients who are at high-risk of eventually developing cancer. Finally, Rufus Collea, MD, and colleagues provide their perspective on innovative strategies that can be used to improve palliative care, patient navigation, and interdisciplinary patient-family communication.

How can we ensure that more patients can benefit from effective, early palliative care? Perhaps this involves the breadth of stakeholders who participate in the care of these patients to overcome their prejudices over the word “palliative.” Palliation involves an acknowledgement that a patient’s cancer care needs extend well beyond the need for surgery, chemotherapy, and radiation therapy. In embracing the full range of needs of our patients, including the need to manage the distress associated with a cancer diagnosis, we can continue to bring increasingly effective, patient-centered care to those in need. A partnership between the oncologist and the palliative care physician provides an increasingly robust response to the needs of our patients and their families. 

Joseph Alvarnas, MD, is director of value-based analytics and clinical associate professor, Department of Hematology/Hematopoietic Cell Transplantation, City of Hope, Duarte, CA. He is also the editor-in-chief of 

		Berry LL, Castellani R, Stuart B. The branding of palliative care. 

. 2016;12(1):48-50. doi: 10.1200/JOP.2015.008656.

		WHO definition of palliative care. World Health Organization website. 

http://www.who.int/cancer/palliative/definition/en/

		Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non—small-cell lung cancer. 

. 2012;30(4):394-400. doi: 10.1200/JCO.2011.35.7996.

Articles

Evidence-Based Oncology

High-quality cancer care can only occur when the “transitions in care” are delivered in a prospectively planning, systematic, patient-centered way.

The Transition to Integrate Palliation in Cancer Care

— 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

Although the US healthcare landscape appears to be shifting yet again with a new Congress and administration vowing to replace the Affordable Care Act 7 years after its passage, at least one trend remains stable: the healthcare sector will continue to shift towards becoming more patient-centered, while emphasizing quality and improved, measurable outcomes of the population served.

Further, the rise of new value-based payment models that prioritize quality over quantity of services will lead to new benchmarks for care. This, in turn, is driving the redesign of our healthcare delivery model, transforming it into one that puts patients and families at the center of care management. Increasingly, providers are beginning to organize into integrated practice units (IPUs) and integrated care delivery systems that shift providers away from their traditional role as siloed institutions and towards a more cohesive network of care delivery.

These trends are both good for the patient and good for the payer, as providers who are implementing new models are seeing and experiencing on the front lines of care.

Nowhere could this trend be more evident than in the oncology sector, where a major reorganization in the way cancer treatment is delivered is currently underway. Patients and families have become essential voices in decisions on care delivery and the care experience. Embracing this new model of team-based care, in which responsibility for a patient’s well-being is shared among clinical and nonclinical staff alike, will lead to more integrated, interdisciplinary units while improving quality and lowering costs across the spectrum.

As we fully embrace this new model of oncology care delivery, it is crucial that communication and information sharing among care providers continue to develop, while workflows between different segments of the care cycle remain integrated. Three key areas lie at the forefront of this shift:

		Prescription and delivery of palliative care

		An increasingly important role for clinical staff in navigating a patient through the treatment process

		The ever-increasing importance of interdisciplinary patient-centered communication through the Family Meeting Model

The transition to a patient-centered care model must include thorough attention to the enormous role palliative care plays in cancer treatment. Palliative care is a critical component of cancer treatment due to its focus on improving both a patient’s functional status and overall quality of life, regardless of treatment outcomes. Recently, palliative care has gained attention as a specialty that is critical to improving patient quality of life while also improving efficiencies.

This is good news for the transition to patient-centered care, as palliative care, especially specialized palliative care, has been proven to reduce hospital stay lengths, lower provider expenditures, and free up resources previously devoted to critical care. On average, palliative care consultations result in savings of up to $1.3 million for a 300-bed community hospital and up to $2.5 million for the average academic medical center.

 Palliative care also plays a role in improving patient survival rates, since the relief from pain and symptoms of cancer treatment actually helps patients complete their course of treatment.

Furthermore, palliative care intervention can be a crucial window into exploring the value of treatment, enabling patients and families to make better decisions regarding their goals for care.

For this to happen, however, substantial changes must be made in the realm of palliative care delivery:

		Patients should be afforded increased access to specialist services so that high-quality palliative care can be available to more people.

		Palliative care delivery must move beyond inpatient and outpatient consultations. Patients, providers, and practitioners must be committed to moving palliative care forward to reach individuals earlier in their course of illness. This can be done by exploring open-access models that allow palliative and cancer treatments to be pursued simultaneously, as is currently allowed by CMS’ Care Choices Model.

		Stronger patient outreach and education initiatives and improved physician-patient communication is critical to ensuring that patients and doctors are aware of all available options. Efforts must be undertaken to ensure practitioners are well-versed in primary palliative care so that some of the basic elements of palliative care can be delivered early in a patient’s treatment regimen.

		Practitioners will need innovative approaches to delivering services to all patients, especially the seriously or terminally ill.

Such a cultural change in palliative care delivery can encourage patients and their families to become more engaged with practitioners, opening the door for better physician—patient relationships and easing the transition to a better patient-centered model of cancer care delivery.

New York Oncology Hematology (NYOH), a leading provider of community-based cancer care services, has started implementing many of these approaches to palliative care delivery, with positive, measurable results. At a time when services are generally restricted to the inpatient and home settings, NYOH’s team has experimented with bringing services into the outpatient community setting, expanding access for patients while maintaining a high quality of care.

NYOH’s palliative care program is helping change the perception of palliative care: applying this integrated, coordinated approach to a mainstream care model that is available to all oncology patients has moved the perception away from that of a “crisis intervention” service that is typically assigned only to patients in a serious condition or near end-of-life.

Improving Navigation and Social Work Services

Physician practices are just 1 component of the oncology clinical setting. Equally important are the roles played by nonclinical interdisciplinary teams whose holistic management services impact a patient’s care plan, care experience, and overall well-being. Such an interdisciplinary team—which includes nonclinical staff, social workers, and nurse navigators&mdash;provides a critical link between the patient and the rest of the healthcare delivery process. This “navigation team” provides continuity of care over the course of treatment and ensures that important details are addressed as a patient transitions throughout the healthcare continuum. One way to enhance this coordination, and develop effective navigation teams, is to look at the strategies undertaken by IPUs and integrated care delivery systems. These networks have been successful in ensuring patients are cared for throughout the duration of their treatment, thanks to robust and effective interdisciplinary teams.

Any transition towards a patient-centered care model should ensure that special attention is paid to social workers, whose role in a patient’s treatment and recovery extends far beyond what a physician alone can provide. Social workers meet patients and families where they are at any given moment: at home, at the hospital, or in a community care setting. They are trained to deal with the psychological issues associated with chronic illness that many medical providers may not be equipped to observe or address. By listening to the patient and their family, social workers focus on bringing to light the mind, body, and spirit connection element of an illness, and they work on integrating it into the patient’s care plan. Any movement towards patient-centered care would benefit by ensuring that the interdisciplinary team remains an integral part of the care delivery model.

Improved Physician-Family Communication and the Family Meeting Model 

The transition to patient-centered oncology care would be incomplete without open physician-patient communication and the full involvement of a patient’s family. Therefore, it is necessary to develop family support structures to facilitate communication among physicians, patients, and families.

Recent studies reveal significant room for improvement in the area of the physician-patient communication. Studies have found a high degree of discordance between the prognoses held by a physician and that physician’s oncology patient. Patients are often more optimistic about their prognoses than their doctors, and they are usually unaware that discrepancies exist between the two. A study of 236 oncology patients found that 68% of patient—oncologist survival prognosis ratings were discordant. About 89% of discordant patients did not know that their opinions differed from those of their oncologists. Nearly all believed that their prognoses were better than their doctors’ professional opinions.

Meanwhile, oncologists and other specialists also face significant challenges with delivering bad news. Researchers in the conversation analysis field have consistently demonstrated that even when physicians are experienced in delivering bad prognoses, there is still an incentive to downplay or avoid giving the bad news. A study by Elizabeth Lamont and Nicholas Christakis found that physicians provided completely honest answers to patients only 37% of the time regarding their survival estimates, even when patients explicitly requested the information.

 Instead, doctors preferred to give inaccurate information (40% of the time, according to the study) or none at all (22.7% of the time). This trend held true even for patients with advanced or incurable cancer diagnoses. Clearly, there is a need for a better model of direct and honest physician-patient communication.

Fortunately, programs that emphasize patient-centered communication and family involvement have been shown to have a substantial impact on a patient’s well-being. The Values and Options in Cancer Care study, conducted by researchers at cancer clinics in western New York and northern California, found that individualized communication training programs for oncologists can result in clinically and statistically significant improvements in physician-patient communication.

 Participants who received the training scored better on the researchers’ composite measures of physician-patient communication than those who didn’t receive the training.

Furthermore, the Family Meeting model, which recognizes that cancer care frequently involves the patient’s entire family, can be an effective approach to developing sound patient-centered care. By recognizing that patients are almost never alone in facing their cancer treatment, practitioners—oncologists, nurses, and social workers alike&mdash;can orient their practice to be more patient-focused.

Paolo Gritti at the Second University of Naples has outlined several methods for implementing the Family Meeting model.

 It begins with the need to create a setting where open, frank discussions on patient health can take place. Oncology practitioners implementing the Family Meeting model should then be prepared to do the following:

		Share complete and accurate information about the patient’s diagnosis, condition, and prognosis.

		Discuss quality of care and establish an understanding of the patient’s/family’s views on cancer treatment and their goals for care.

		Inquire about how the family is coping or planning to cope with the disease and develop coping strategies.

		Recognize individuals’ emotions surrounding the patient’s diagnosis and account for differing feelings among family members.

At NYOH, practitioners are moving towards their own Family Meeting model to move cancer care from a reactive to a proactive process. Team members are coming together to share and develop a care plan that is driven by patient and family needs and goals, which reflects the whole patient experience. This is done via a forum where families can be educated and can discuss care options prior to an actual crisis. The NYOH Family Meeting model also encourages patients to be empowered to identify personal goals related to their treatment in a setting that welcomes open and honest discussion of all aspects of health, including topics previously considered taboo.

The transition to value-based, patient-centered care is not always simple or straightforward. However, with versatile interdisciplinary teams using effective tools and strategies that recognize the value of the patient and their support system in the treatment process, community-based cancer providers are measurably improving the care experience and outcomes for their patients. 

Rufus Collea, MD, is medical director and physician lead for the Oncology Care Model project for New York Oncology Hematology.

Linda Pulver, RN, BA, is quality and clinical program lead for the Oncology Care Model project for New York Oncology Hematology.

Claire Ralli, LCSW, is a social worker at New York Oncology Hematology. Amanda Burgess, RN, OCN, is a nurse navigator at New York Oncology Hematology.

1. Porter ME, Lee TH. The strategy that will fix health care. Harvard Business Review website. https://hbr.org/2013/10/the-strategy-that-will-fix-health-care. Published October 2013. Accessed April 19, 2017.

2. Morrison RS, Penrod JD, Cassel JB, et al; Palliative Care Leadership Centers’ Outcomes Group. Cost savings associated with US hospital palliative care consultation programs. 

. 2008;168(16):1783-1790. doi: 10.1001/archinte.168.16.1783.

3. Davis MP, Temel JS, Balboni T, Glare P. A review of the trials which examine early integration of outpatient and home palliative care for patients with serious illnesses. 

. 2015;4(3):99-121. doi: 10.3978/j.issn.2224-5820.2015.04.04.

4. Medicare Care Choices Model. CMS website. https://innovation.cms.gov/initiatives/Medicare- Care-Choices/. Updated February 13, 2017. Accessed April 19, 2017.

5. Casarett D, Teno J. Why population health and palliative care need each other.

. 2016;316(1):27-28. doi: 10.1001/jama.2016.5961.

6. Gramling R, Fiscella K, Xing G, et al. Determinants of patient-oncologist prognostic discordance in advanced cancer. 

. 2016; 2(11):1421-1426. doi: 10.1001/jamaoncol. 2016.1861.

7. Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. 

8. Epstein RM, Duberstein PR, Fenton JJ, et al. Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced cancer: the VOICE randomized clinical trial. 

. 2017;3(1):92-100. doi: 10.1001/jamaoncol.2016.4373.

9. Gritti, P. The family meetings in oncology: some practical guidelines. 

. 2015;5:1552. doi: 10.3389/fpsyg.2014.01552. eCollection 2014.

As the American healthcare sector transitions towards value-based and patient-centered care models, New York Oncology  Hematology has seen success in modernizing palliative care delivery, integrating social services with the overall care experience, and using the family meeting model to ensure families remain involved throughout the patient’s treatment process.

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

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

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.

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.

June 2017

The Transition to Integrate Palliation in Cancer Care

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

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

Project ECHO: An Effective Means of Increasing Palliative Care Capacity

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

Transitions of Care in Patients With Cancer

Conference Coverage: NCCN

Conference Coverage: COA

Medical World News, June 2017

AJMCtv® Interviews, June 2017