Tag Archives: ACCC 33rd National Oncology Conference

Life, Interrupted: One AYA Patient’s Cancer Journey

From the recent ACCC 33rd National Oncology Conference, this is the second in a two-part blog series highlighting featured speaker sessions focused on adolescent and young adult (AYA) cancer patients.

NOC 2016 Crowd

On Friday morning, October 21, conference attendees heard the AYA patient voice loud and clear in a riveting presentation by Suleika Jaouad, author of the award-winning New York Times column, “Life, Interrupted.”

“My name is Suleika Jaouad, and I am a cancer survivor.” With that Jaouad began the story of her experiences as a young adult with cancer.

“Looking back, the symptoms had been there for awhile,” she said. But getting to a diagnosis turned out to be a lengthy, arduous, and scary process.  Originally told she had “burnout syndrome,” it took months to eventually learn that she had an aggressive form of leukemia. At 22 years of age, Jaouad had no family history of cancer, she always ate organic, and was a straight A student. Lesson learned: “Cancer doesn’t care what your GPA is or how good a person you may be, because cancer doesn’t discriminate.”

Life interrupted is what cancer feels like, Jaouad said. Overnight she lost everything she had worked for as a young adult, having to move back home into her childhood bedroom. “I lost my job, my apartment, and maybe worst of all, I lost my independence.”

Knowledge is Power, But. . .

Where and how to find the “knowledge” about your cancer and treatment “was a bigger challenge than I expected,” she said. With providers, she often felt “lost” in the conversation. “I wanted to understand what lay ahead, but often felt too overwhelmed, intimidated, and sometimes embarrassed to ask them to explain and re-explain.”

While searching the Internet, she came across a list of side effects and “one word stuck out to me—infertility.” No one on her medical team had mentioned this side effect to her. “Lack of information on that felt like a breach of trust early on in my treatment. . . . I wanted to make this decision with my medical team,” she said, not have it be a decision that was made for her. “Preserving my ability to be a mother one day felt like a very important lifeline to a very uncertain future.”

Once she brought the topic up with her team, she was provided with resources. But lesson learned: Clear, open communication between herself and her medical team was not always a given. She would have to take an active role in her treatment.

Echoing Thursday morning’s Helping AYAs Be Loud! session’s call to action, Jaouad emphasized that AYAs face unique medical, professional, and psychological challenges. It’s almost as if AYAs are oncology’s tweens, she said, too old for pediatrics but too young for the adult oncology unit. Young adults are a misunderstood and overlooked part of the cancer patient population.

I Wanted a Cure, Not a Trial

In 2011, at the end of the first round of treatment a biopsy showed that standard treatment hadn’t worked and she was going into bone marrow failure. Because a bone marrow transplant was becoming less likely, Jaouad said, she had to face the possibility that she might not be cured. It was then that she learned about clinical trials. Ultimately, she enrolled in a trial and after 8 months was in enough remission for a bone marrow transplant.

Survivorship: Unknown Terrain

Although she received excellent care, Jaouad did not learn about her cancer program’s survivorship care clinic until after she wrote a column focused on how, as a cancer survivor, she lacked any kind of roadmap for the way ahead. She was then connected to the cancer center’s survivorship program, which provides resources to help patients stay healthy in the long-term both physically and psychologically.

Lesson learned for providers: Make sure patients are connected to the resources that are already in place. After all, “what’s the point of going through all these treatments if it’s not to live a good life and a healthy and meaningful life?”


Stay tuned for more from the ACCC 33rd National Oncology Conference. Read about an innovative program for AYAs at Seattle Children’s Hospital’s Building Hope (Oncology Issues Nov/Dec 2013).

 

 

 

 

 

 

Helping AYA Patients to Be Loud

By Amanda Patton, ACCC Communications

What does it mean to “be loud”? Sometimes it means just being heard.

Lauren Lux speaks at the ACCC 33rd National Oncology Conference.

Lauren Lux speaks at the ACCC 33rd National Oncology Conference.

For adolescent and young adult (AYAs) cancer patients, that can be a challenge. Two powerful sessions at last week’s ACCC 33rd National Oncology Conference focused on how to “hear” the voice of AYAs and understand what patient-centered care looks like to this under-served patient population. This two-part blog series recaps key session takeaways.

In the opening session of the conference, Lauren Lux, LCSW, UNC Lineberger Comprehensive Cancer Center, along with Niklaus and Lucy Steiner, co-founders of the Be Loud! Sophie Foundation, reminded the hundreds of conference attendees just how important it is to raise the volume about the unique and unmet needs of AYA cancer patients. In establishing the Be Loud! Sophie Foundation, the Steiners are honoring the vision of their daughter, Sophie Steiner, who passed away in 2013. The foundation’s name comes from lines of a poem Sophie wrote:

The Steiners speak at the ACCC 33rd National Oncology Conference.

The Steiners speak at the ACCC 33rd National Oncology Conference.

. . . Be loud

And move with grace

Explode with light

Have no fear…

Sophie’s vision was to help young cancer patients stay true to themselves in the face of overwhelming illness. The foundation has helped create the Adolescent and Young Adult Program at UNC Lineberger Comprehensive Cancer Center.

Why Be Loud?

Each year nearly 70,000 AYAs (roughly between the ages of 15 and 38) are diagnosed with cancer, Lux said. This group is:

  • Severely under-represented in clinical trials
  • Less likely to access “adult” oncology support services
  • More likely to experience financial toxicity as a side effect of cancer
  • Seeing only a modest increase in cure rates over recent decades.

The bottom line: AYAs have unique and unmet needs, Lux said.

How can cancer care providers better “hear” AYAs—and help these patients’ needs be addressed? The first step is establishing effective communication. Lux, who is director of the Adolescent and Young Adult Program at the UNC Lineberger Comprehensive Cancer Center, shared practical communication tips for connecting with and empowering AYAs. “You don’t have to be cool,” she reassured attendees. What you do have to be is:

  • authentic
  • flexible
  • compassionate
  • honest
  • willing to get to know the PERSON not just the PATIENT

A second step is to recognize how important having some control over their lives is to AYAs. “I consider myself an ‘opt in’ activity for people,” said Lux. Rather than scheduled appointments, she will drop by patients’ rooms and ask if the timing is good for them. She also encourages lots of visits from friends. The Steiners, too, stressed how important it is for AYAs to have connection with the non-medical, outside world.

Have the Sex Talk

Conversations about fertility preservation and sexual activity are not one-time events for AYAs, Lux said. Fertility preservation is a huge issue for this patient population. It is expensive and is usually not covered by insurance. AYAs need information about sex before, during, and after treatment, and these conversations should also involve their partners, she emphasized. For cancer programs, it is essential to decide who on the care team “owns” having this conversation with patients and their significant others, she said. “When no one owns it, it doesn’t happen.”

With the AYA population, the caregiver role is complex and nuanced. Helping ensure that adolescent and young adult patients are empowered to voice their choices is important, Lux said, and it’s important to empower them in their conversations with their providers.

Take Action

Lux offered some no-cost steps that cancer programs can take today to improve care for their AYA patients:

  • Schedule AYA clinic days—arrange for adolescent and young adult patients to come to clinic on the same day
  • Create an AYA Advisory Council
  • Explore social media options, for example, blogs
  • Provide information on local and national AYA organizations
  • Check out online resources, such as Stupid Cancer and Stupid Cancer meet ups.

The session’s number one takeaway: Ask your AYA patients what’s important to them.


Learn more in part two: “Life, Interrupted, One AYA Patient’s Cancer Journey.”

ACCC 33rd National Oncology Conference: “How To’s” for Patient-Centered Care

NOC 2016 Crowd

Attendees at the 33rd National Oncology Conference.

Nearly 600 attendees came together in St. Louis last week for the 33rd ACCC National Oncology Conference and companion pre-conferences. Across sessions the focus was on practical, proven “how to’s” for improving the delivery of patient-centered care in today’s challenging healthcare environment. Echoed throughout presentations were key messages for improving patient-centered care that apply regardless of cancer program size, structure, or geographical setting:

Listen to our Patients.

From a pre-conference Metastatic Breast Cancer Symposium to Thursday morning’s powerful opening session with speakers Niklaus and Lucy Steiner from the Be Loud! Sophie Foundation and Lauren Lux, LCSW, from the UNC Lineberger Comprehensive Cancer Center, to Friday morning’s inspiring session with New York Times columnist Suleika Jaouad, to the ACCC President’s theme panel on “Empowering Patients, Engaging Providers,” the message was loud and clear. Providers need to elicit and listen to the patient’s story.

“You’ve got to get to know the patients. . . . That’s something we’ve moved away from with [all of the] time constraints,” [Empowering Patients, Engaging Providers Panel].

“We have to take the time to ask the patients about [their] needs, wants, expectations…” [Empowering Patients, Engaging Providers Panel].

“You can’t have true patient-centered care unless you make the patient an active part of the conversation,” Suleika Jaouad.

Break Down Siloes.

To improve patient-centered care delivery, oncology needs to bridge existing healthcare siloes. This was the message in Anabella Aspiras’ conceptual talk on “Bringing the Cancer Moonshot Down to Earth” and the real-world experience described by ACCC 2016 Innovator Award winner Cone Health System, which described how to use data to identify “hot spotter” patients, assess gaps in care, and then connect across disciplines to improve care.

Connect with Existing Resources & Partnering Opportunities.

Innovator Award Winners

2016 ACCC Innovator Award Winners at the National Oncology Conference.

Multiple presenters focused on ways to connect and engage with community partners and resources to benefit the communities they serve. For example, Amy Montgomery and Robin Hearne, RN, from 2016 ACCC Innovator Award winner Outer Banks Hospital described steps to engage their county health department and school district leaders as strategic partners in a multi-faceted educational campaign that led to improved HPV vaccination rates for adolescents in their community.

Communicate. Communicate. Communicate.

It’s important to look for opportunities to improve communication not just outside the walls of the cancer program with primary care providers and other specialists, but within all members of the cancer care team. Explore strategies to leverage your program’s EHR to streamline information sharing among disciplines and team members.

Recognize the need for training for difficult conversations, not just between providers and patients, but internally among the oncology care team.

One-size-fits all communication does not work for a diverse population of cancer patients. In particular, it’s important to pay attention to opportunities to improve communication with underserved or under-recognized patient populations such as metastatic breast cancer patients and adolescent and young adult patients (AYAs).

Featured speakers addressing gaps in care for AYA patients provided practical suggestions for connecting with these young adults. In her dynamic, down-to-earth talk on “Helping AYAs BE LOUD,” Lauren Lux, LCSW, UNC Lineberger Comprehensive Cancer Center, shared that in communicating with AYAs it’s important to be:

  • authentic
  • flexible
  • compassionate
  • honest
  • willing to get to know the PERSON (who they are, what’s important, what drives them) and not just the PATIENT.

Be Ready for Culture Change.

On the business side, the culture shift to value-based payment reform is already underway.

From the patient perspective, the move is toward more patient-directed care. At the conclusion of Friday’s “Empowering Patients, Engaging Providers” discussion, panelists were asked what patient-centered care might look like in five years.

“I think patients want to get more involved with their biological information,” said ACCC President Jennie R. Crews, MD, MMM, FACP. “I think we’re going to see more patient insistence on ownership of the process.” Providers need to engage with patients as this culture shift is occurring, she said, as patients become more engaged, informed, and connected.

Upcoming blog posts will provider a closer look at takeaways from some key conference sessions. Stay tuned.

Connecting the Moonshot to Patients

By Amanda Patton, ACCC Communications

ACCC President Jennie R. Crews, MD, MMM, FACP, welcomes conference attendees.

ACCC President Jennie R. Crews, MD, MMM, FACP, welcomes conference attendees.

The Cancer Moonshot framed Thursday’s  sessions at the ACCC 33rd National Oncology Conference in St. Louis. “I’ve been privileged to be part of the conversations around the Moonshot,” ACCC President Jennie R. Crews, MD, MMM, FACP, told attendees in her opening remarks. On Monday Dr. Crews participated in panel discussion at the White House as part of the Moonshot Task Force Report unveiling. With a goal of making a decade’s worth of progress in cancer prevention, diagnosis, treatment, and care in five years—it’s an “audacious” initiative that will bring challenges and significant opportunities to community oncology, she said.

In a heartfelt video message to conference attendees, Vice President Joe Biden, called community cancer centers the “bridge” between the Moonshot and cancer patients. “For the overwhelming majority of those patients who are diagnosed [with cancer], the next step leads to you,” he said. “Community oncologists treat as much as 85 percent of cancer patients . . . .Not only do your patients need you, your country needs you.”

It was a message reiterated at the end of the day by Anabella Aspiras, Director for Patient Engagement, Cancer Moonshot Task Force, in a session exploring how the Cancer Moonshot will affect providers in the community setting. “You truly connect the work of the Cancer Moonshot to cancer patients,” she told attendees. Ms. Aspiras highlighted the three Moonshot reports announced on Monday:

The Vice President’s Executive Report, a summary of work accomplished to date and challenges that must be addressed, which was presented to President Obama on Monday. The report outlines five strategic imperatives:

  • Realign incentives in the research system
  • Enhance prevention efforts
  • Engage patients as partners in research
  • Expand access to care
  • Convene a national conversation about cost.

The Task Force Report, covers the implementation plans for accelerating progress and includes Moonshot efforts underway over the past year.

The Blue Ribbon Panel Report, which integrates feedback into the panels 10 recommendations.

Anabella Aspiras and Jennie R. Crews, MD, MMM, FACP, at the ACCC National Oncology Conference.

Anabella Aspiras  with ACCC President Jennie R. Crews, MD, MMM, FACP, at the Cancer Moonshot Report unveiling earlier this week.

In her remarks, Ms. Aspiras called attention to existing ACCC initiatives that support the Blue Ribbon Panel recommendations, including the Institute for Clinical Immuno-Oncology (ICLIO) and ACCC’s educational work related to integrating biomarker testing in the community setting.

In her role at the Moonshot Task Force, Ms. Aspiras’ primary responsibility is to represent the voice of the patient in four areas: addressing cancer inequities, enhancing community cancer care, improving clinical trial participation (accrual and retention) in particular in terms of under-represented populations; and survivorship. Research must benefit all segments of society, Aspiras said. “We must ensure advances in treatment are distributed equally.”

In closing, Ms. Aspiras thanked ACCC members for the work they do. “You bridge the gap between our efforts on the Cancer Moonshot and the patients we aspire to reach,” she said. “Every day you change the face of cancer as we know it.”

Stay tuned for more from the ACCC 33rd National Oncology Conference. Follow the conferences highlights on Twitter #ACCCNOC.

 

OPEN Pre-Conference Highlights

By Amanda Patton, ACCC Communications

New ACCC "Hub" in the Exhibit Hall, one-stop for resources, informatiion, and membership information

ACCC “Hub” in the Exhibit Hall welcomes conference attendees with a central source for resources and information on everything ACCC.

We’re in St. Louis for the ACCC 33rd National Oncology Conference this week. Events got underway on Wednesday, October 19, with dynamic pre-conference sessions focused on some of the most challenging and rapidly evolving areas in cancer care delivery. Read on for highlights from the Oncology Pharmacy Education Network (OPEN) pre-conference.

A morning panel discussion during the OPEN Pre-Conference focused on strategic planning for the oncology pharmacy. Zaven Norigian, PharmD, BCOP, Beth Israel Deaconess Medical Center, moderated a discussion with Steve D’Amato, BSPharm, New England Cancer Specialists, and Ali McBride, PharmD, MS, BCPS, BCOP, University of Arizona Cancer Center, that touched on some of the toughest challenges for oncology pharmacy today. Among these:

Cost of drugs. Pharmacy budgets continue to increase, the value of inventories in clinics is escalating, and if programs are not paid in a timely manner, cash flow problems will result. With the increase in immunotherapies and new oral agents, programs are wrestling with how to afford of these therapies and provide access to these for all of their patients. “The bank is going to break eventually,” said D’Amato.

Implementing genomic testing. Operationalizing this in the community setting is creating big challenges for the oncology pharmacy, panelists agreed. It requires a multidisciplinary approach providing integration and education for clinical pharmacists and nurses. There must be buy-in from everyone.

EHR and data issues. Programs need to be able to mine their data, understand their data, and reduce the staff time needed to collect and report data. Pharmacy is looking to technology to solve some of these important issues—without being “nickel and dimed to death” by their EHR vendors, panelists said.

USP 800. This is top-of-mind if you work in pharmacy, panelists agreed. Among the pressing challenges: How do you explain issues related to USP 800 compliance to the C-suite? Attendees were urged to act now—if they haven’t already—and at a minimum bring in a consultant to determine what it will cost to be compliant by 2018. “We know it’s going to be costly…it’s not something you can flip the switch one day and start it,” said Norigian.

Succeeding with Oral Oncolytics

An OPEN Pre-conference session tackling a critical current day challenge highlighted ACCC’s education initiative, Steps to Success: Implementing Oral Oncolytics. (The session was broadcast live, and will be available on the ACCC website on-demand soon.)

“One of the biggest challenges with oral oncolytics is that we put so much responsibility on the patient,” said presenter Niesha Griffith, RPh, MS, FASHP, West Virginia University Health System. Pharmacists need to be “on the frontlines” of taking care of oncology patients, she said.

Calling attention to the Steps to Success white paper developed as part of this ACCC initiative, Griffith focused on the project’s key programmatic recommendations for successful integration of oral oncolytics:

  • Take a multidisciplinary approach
  • Assign responsibilities; clearly identify who is responsible for what
  • Work collaboratively with specialty pharmacy (as needed)
  • Provide financial advocacy services
  • Develop a robust patient education program
  • Put in place effective processes for monitoring for adherence and toxicity
  • Maximize the use of technology

Griffith stressed the importance of developing robust case management platforms so that all providers can document information from patient visits. Where possible, develop methods to streamline processes. For example, devising a streamlined process for prior authorizations can help avoid pulling staff away from frontline care for this time-consuming task. Access more resources from ACCC on successful integration of oral oncolytics here.

Stay tuned for more from the ACCC 33rd National Oncology Conference from ACCCBuzz. Follow the conference highlights on Twitter #ACCCNOC.

Tele-Health Technology Connects Patients with Nutrition Services

by Nicole Esco, MPA, RD, LDN

Innovator Seal16singularAfter receiving a cancer diagnosis, patients suddenly face a schedule full of appointments. Not only can this be overwhelming, the schedule can also leave patients feeling that there is little room for additional, potentially beneficial appointments such as a consultation with an oncology dietitian. Even when patients want to schedule a visit with the dietitian, transportation is often a barrier and a source of additional stress for patients unable to drive or with limited support at home. Those living in rural communities may have to travel a significant distance just to receive their treatments, and as care providers we want to limit the burden on our patients.

At Baton Rouge General Medical Center Pennington Cancer Center in Baton Rouge, Louisiana, all patients receiving radiation therapy have access to the services of a registered dietitian for individual nutrition consultations, follow-up care, and referrals to community resources. Some patients will encounter challenges with eating during treatment, and the dietitian can ensure that these patients have the tools to manage any side effects that may interfere with eating well, adequate hydration, and maintaining a healthy weight.

Registered dietitians apply evidenced-based nutritional intervention to improve patient outcomes. For example, patients at high nutritional risk (those with cancers of the head and neck, stomach, pancreas, and lung, and patients receiving tube feeding/IV nutrition) need weekly follow-up since they are at greater risk for eating difficulties, dehydration, and/or maintaining a healthy weight due to treatment side effects.  But the fact is that scheduling a separate appointment with the dietitian in addition to their daily treatment schedule and other medical appointments is challenging for these patients. At Pennington Cancer Center our focus is on providing patients with comprehensive care with as little disruption to their schedules as possible.

Delivering Care Close to Home

In 2014, Pennington Cancer Center expanded its radiation oncology services, adding a third center located in Zachary, Louisiana, 16 miles north of our Baton Rouge clinics. This new clinic serves the surrounding rural communities in Louisiana and Southern Mississippi –areas where patients previously had to travel significant distances to receive radiation treatment.

Pennington Cancer Center is committed to ensuring that nutrition services are available to all patients undergoing radiation treatments. Our challenge: finding a way to make these services convenient for patients and efficient for staff scheduling.  As a result, we explored various telemedicine solutions. One challenge was finding a telemedicine option that was both HIPAA-compliant and easy for staff to use. We wanted a program that provided secure data transmission, safeguarding patient information. Our IT team was integral in helping us to implement an effective telemedicine program and ensure the security of video conferencing.

Today, we offer patients virtual nutrition counseling sessions conveniently scheduled when they are already at the radiation center for their daily treatment appointment.  Scheduling these sessions in conjunction with their treatment schedule eliminates the need for additional appointments or having to arrange transportation to other clinics for an in-person visit. These virtual sessions provide patients with the same nutrition information and resources that they would receive if they were meeting with the dietitian face-to-face.

During these virtual sessions, the dietitian’s role is to engage the patient and help build rapport. Video conferencing is a new concept for a lot of our patients, and some are more comfortable initially than others. On the other hand, some patients are very comfortable and open up immediately. Watch our short video to learn more.

Pennington Cancer Center’s initiative Tele-Health Technology Connects Patients with Nutrition Services is being recognized with a 2016 ACCC Innovator Award. Join us at the ACCC 33rd National Oncology Conference in October and learn more about how we implemented this patient-centered service.


Guest blogger ACCC member Nicole Esco, MPA, RD, LDN, is the registered dietitian in the Radiation Oncology Center, Pennington Cancer Center Baton Rouge, LA.

 

 

Three Ways to Support Your Cancer Registrars

By Linda Corrigan, MHE, RHIT, CTR

Check boxCommission on Cancer (CoC) Cancer Program Standards 2016 are designed to ensure a comprehensive approach to the care and treatment of patients. Cancer programs seeking CoC accreditation must demonstrate that they’ve met or exceeded these standards—many of which require data tracking. Your cancer registrar can assist your clinicians in designing the best “tracking tool” for your program. For many programs, the best tool will be your cancer registry software. Cancer registrars well-versed in high quality data collection are key to the success of a cancer program. In turn, there are three critical ways your program can support its cancer registrars:

  • Make sure your cancer registrars are up-to-date by supporting training and continuing education opportunities. Change is a constant in the world of oncology. Treatments are advancing, CoC standards are added and/or revised, and state cancer registry data-collection guidelines are updated annually. A prime example of this constant change is the American Joint Committee on Cancer’s (AJCC) soon-to-be-released Cancer Staging Manual. The new 8th edition, scheduled for publication in October 2016, will revise how cancer is staged.
  • Encourage your cancer registrars to get involved in state and national organizations and provide funds for them to attend meetings and conferences. The key to helping your cancer registrar stay current is networking and continuing education. Some registrars have as many as three separate organizations and/or federal agencies that “set” the standards for exactly how and what data are collected from a facility’s cancer program. Cancer registrars who attend national conferences and state meetings or who are encouraged to volunteer for national and state-level organizations develop a network of colleagues from across the country that can be tapped as a resource when your program has questions.
  • Staff your cancer registry appropriately. The best way to support and retain your cancer registrar and to ensure high-quality data collection is to make sure you have the staffing bandwidth for the number of cancer cases your facility manages each year. Review NCRA’s Workload and Staffing Study: Guidelines for Hospital Cancer Registry Programs to help assess your staffing needs.

The National Cancer Registrars Association (NCRA) and the Association of Community Cancer Centers (ACCC) are two national associations that can help cancer programs support their cancer registrars. NCRA’s Annual Educational Conference provides a thorough and cost-effective way for cancer registrars to stay informed and to network. Attendees learn about updates to treatments and staging, CoC standards, clinical trials, and national trends. The 2017 conference, scheduled for April 5-8, in Washington, D.C., will focus on the AJCC’s 8th edition of the Cancer Staging Manual. Look for conference updates on the NCRA website here.  NCRA’s Center for Cancer Registry Education is a learning management system designed to provide easy access to high-quality educational programming. The website offers a variety of online products to help registrars tailor training and manage the continuing education credits needed to maintain their Certified Tumor Registrar (CTR) credential.

ACCC is also a great resource for cancer registrars. ACCCExchange, the association’s online member discussion forum, connects registrars with peer-to-peer solutions, strategies, and resources for how to best meet CoC standards. ACCC’s journal Oncology Issues provides in-depth articles on programmatic innovations implemented by ACCC member programs, coding updates, and advocacy issues—and can be a valuable resource for registrars to better understand advancements in cancer treatment and care. Coming in October, the ACCC 33rd National Oncology Conference in St. Louis will focus on practical “how to’s” for cancer programs and practices, with peer-to-peer learning on process improvement strategies, putting data to work to improve care, and more. Learn more here.

Contributing blogger ACCC member Linda Corrigan, MHE, RHIT, CTR, is president, National Cancer Registrars Association.

Palliative Care: Patient-Centered Support

By Sandy Balentine, MSN, RN, OCN, MBA

HC provider cupping patients hand (for web)The understanding that palliative care is not hospice care has been, and continues to be, a challenge for both patients and providers to grasp. Palliative care is “. . . specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”1  Palliative care is appropriate at any age and at any stage of a serious illness. It is offered alongside—not instead of—curative  care.

Hospice is a philosophy of care for people who are near end of life and are no longer seeking curative treatment.

Palliative Care—Part of Team-Based Care

The role of palliative care is to treat pain and other symptoms, and help patients realistically review the goals of their care. Clinicians trained in the subspecialty of palliative care work together with the patient’s disease-directed care team, helping to better meet the patient’s needs with a team-based approach. The team includes nurse practitioners, physicians, social workers, dietitians, chaplains, pharmacists, registered nurses, and others. The team helps patients gain control of their illness by exploring their goals of care, better understand their treatment options, and avoid unwanted care.  A partnership develops that includes the palliative care team, the patient, and the patient’s family. Patients are relieved to have help with understanding what to expect and how to handle it, and difficult decisions can be made with more information and insight.  Palliative care can help patients and their families cope with the challenges of living with a serious illness. Family members receive support, and as a result feel they can, in turn, better support their loved one.

A Focus on Quality of Life

A pivotal study of patients with metastatic NSCLC by Jennifer Temel and colleagues demonstrated that early palliative care showed significant improvements in quality of life and mood, as patients received less aggressive treatment at end of life but experienced longer survival.

The Institute of Medicine’s (IOM’s) 2013 report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, cites the need for improved access to palliative care for patients with cancer, noting that:

“Care often is not patient-centered, many patients do not receive palliative care to manage their symptoms and side effects from treatment, and decisions about care often are not based on the latest scientific evidence.”

At Valley Hospital, we recognized the difference that palliative care can make in the quality of life for our cancer patients.  We started with an inpatient palliative care program and today also offer palliative care in the outpatient setting or for homebound patients at home in the privacy of their residence. This service is an extra layer of support for an improved quality of life for our patients.

Growing Services to Meet Patients’ Needs

By the end of 2014, our inpatient palliative care service was extraordinarily busy, and the team knew that this service needed to be available to patients before they were admitted to the hospital in a crisis situation. With improved symptom management, hopefully some of these patients could avoid being admitted to the hospital. So we began the process of developing a palliative care service for our outpatients. Our first step was to put together a multidisciplinary weekly meeting that included a psychiatrist, pain management physician, palliative care nurse practitioner, chaplain, pharmacist, social workers, registered nurses and others. This team would review cases and give input and recommendations, combining the joint knowledge of the group. Patients were identified through the physician practice providers, Infusion Center or Radiation Oncology staff, or by self-referral.

As we began to develop the outpatient program, it quickly became obvious that there was a population whose needs we were not meeting. These patients were homebound or had an extremely difficult time getting in to the office.  Still, these patients needed the support that palliative care could provide. To meet this need, our home care agency has now started to integrate palliative care support to our homebound/home care patients as well.

Improving Access for All

Although great strides have been made in palliative care in the last few years, access to these services remains uneven. Palliative care is not available in many smaller hospitals or in rural areas. According to a 2015 report from the Center to Advance Palliative Care (CAPC), Alabama is one of the states with the lowest access, with less than one third of hospitals offering palliative care.  Reasons for this low coverage include a lack of knowledge about palliative care among healthcare providers, socioeconomic factors, geographic factors, transportation issues, and other factors. CAPC is a national organization dedicated to increasing access to quality palliative care for people facing serious illness. CAPC has helped the advancement of palliative care services by providing tools, training, and technical assistance to clinicians as a catalyst to change the conversation around palliative care.  CAPC’s vision is simple: to have palliative care available everywhere.

To ensure that health professionals understand the quality of life issues that exist for their patients, students in medicine, nursing, social work, psychology, and pastoral care, all need to have a robust educational program to help them understand what palliative care encompasses and how it can help patients. This training needs to include early lessons on discussing end-of-life decisions, how to handle anger and sadness from families, and how to respond personally to the loss of a patient. Only then will we be able to approach CAPC’s vision of palliative care available to every patient.

Stay tuned for an upcoming blog from 2016 ACCC Innovator Award winner University of Maryland Upper Chesapeake Health, Kaufman Cancer Center on how to build a palliative care program “From the Inside Out.”

_________________________

Reference
1Center to Advance Palliative Care.  About Palliative Care. Available at www.capc.org/about/palliative-care.


ACCCBuzz contributing blogger Sandy Balentine, MSN, RN, OCN, MBA, is the Director of Clinical Oncology at ACCC Member Program, The Valley Hospital.

HPV Vaccination: Engaging Community Partners for Success

By Amy Montgomery

ACCCBuzz guest blogger Amy Montgomery is Senior Administrator of Operations at The Outer Banks Hospital in Nags Head, North Carolina.

Innovator Seal16singularThe recent American Cancer Society (ACS) endorsement of the U.S. government’s HPV vaccination recommendation signals the start of a new and refreshing conversation.  The updated (ACS) guideline supports the Centers for Disease Control and Preventions (CDC) Advisory Committee on Immunization Practices (ACIP) recommendation to vaccinate both males and females at ages 11 to 12 to protect against HPV.

We have known for years that the vaccine was designed to prevent the human papilloma virus (HPV), which is associated with the vast majority of cervical, vaginal, vulvar, anal, penile, and oropharyngeal cancers.  What we have done, to some degree, is avoid the topic all together.  Until recently, the HPV vaccine was a conversation about whether or not giving the vaccine to a child would lead to early sexual behavior.  Simply put, early sexual behavior is a scary topic for most parents of preteen children.  So, the conversation stopped there.  In the doctor’s office, at the bus stop, at book club – all the places where the topic might come up – it most likely turned toward early sexual behavior, with the cancer prevention benefits of the vaccine left unexplored.

Not any longer.  With the guidance of the CDC and the leadership of the American Cancer Society, the common ground upon which most of us can agree is that HPV vaccination is a powerful tool in our cancer prevention kit.  This is a message that resonates with parents.  The conversation starts like this, “If you could prevent your child from developing a certain type of cancer as an adult later in life, would you do it?”  As a parent, you had me at “prevent my child from getting cancer.”  The door is now open to how, when, and where can I have my child vaccinated.

The Outer Banks Hospital Cancer Committee began using this new conversation when we undertook an initiative to increase the HPV vaccination rate among students enrolled in our local public schools.  This approach helped us gain the support of key community partners including our hospital president, the school system superintendent, and local health department director.  This approach also resonated with parents, demonstrated by the increase in our vaccination rates from 6 percent to 16 percent among 8th grade students in just one year.

Some strategies we used to start this new conversation included:

1)      a cover story in our hospital’s community newsletter

2)      a letter to local physicians from our Cancer Committee physician liaison

3)      flyers sent home in report cards

4)      presentations at back-to-school parent meetings

We also found modest success with older students.  Our efforts increased the vaccination rate from 20 percent to 23 percent among rising high school seniors.  What we learned is that different strategies are needed to encourage catch-up vaccines for this age group.  That is something our team will be exploring as we continue this cancer prevention work.

The Outer Banks Hospital is honored to be a recognized with a 2016 ACCC Innovator Award for our initiative on HPV Vaccination: Engaging Community Partners for Success. At the upcoming  ACCC 33rd National Oncology Conference October 19-21, in St. Louis, Missouri,  we will be describing  how we worked with our community partners to encourage conversation about HPV vaccination and cancer prevention.  Watch our short Innovator Award video to learn more about our initiative.

Join us and all of the 2016 ACCC Innovator Award winners in St. Louis, and hear inspirational, real-world approaches to complex challenges in delivering quality care to serve our communities. View the conference agenda and register today!


The Power of Sharing Your Story

One in an occasional blog series on topics from Oncology Issues, the journal of the Association of Community Cancer Centers.

By Susan van der Sommen, MHA, CMPE, FACHE, ACCC Editorial Committee Chair

Talking heads At the upcoming ACCC 33rd National Oncology Conference October 19-21, in St. Louis, Missouri, the 2016 ACCC Innovator Award winners will be showcasing their pioneering efforts aimed at improving the provision of care to cancer patients with initiatives that can be replicated in other community cancer programs.

Spreading the Word

In addition to speaking at the National Oncology Conference, every ACCC Innovator Award winner has the unique opportunity to write a feature article for Oncology Issues, ACCC’s bi-monthly journal.  The just-released July/August 2016 issue presents in-depth, “how we did it” articles from several of the 2015 Innovator Award winning programs. But opportunities for ACCC members to share their cancer program’s initiatives and successes are not limited to Innovator Award winners. Oncology Issues features insightful articles from ACCC member programs throughout the country – large and small. And every issue includes a “Spotlight” article profiling an ACCC Cancer Program member.

For instance, in the January/February 2016 issue, authors from two ACCC Cancer Program member institutions wrote about how to “Unlock the Potential of the Cancer Registrar,” describing the integral role their cancer registrars are playing in their organizations’ lung screening programs. And the May/June 2016 issue featured an article from ACCC Cancer Program Member The Valley Hospital’s Blumenthal Cancer Center on its Oncology Nursing Fellowship Program. In feature articles such as these, ACCC members share their real-world strategies for overcoming challenges and improving oncology care delivery, enriching the oncology community as a whole.

What better way to feature your cancer program’s success than through an article or profile published in a journal with national coverage? Many of our colleagues have used the opportunity to garner local media coverage in their respective markets; others have showcased their work among their peer group – which sometimes includes much larger centers.

In a recent ACCC Communications Survey, ACCC members were polled on the association’s journal, Oncology Issues:

  • 90% said that Oncology Issues is the “primary benefit of ACCC membership.”
  • 98% said that Oncology Issues “contains practical information, insights, ideas, and tools.”
  • 92% said that Oncology Issues “contains information that I do not find in other sources.”
  • 88% said that Oncology Issues “helps my cancer program stay ahead of the competition.”
  • 88% said that Oncology Issues is “must reading for me to stay ahead in my profession.”

What makes the Oncology Issues so successful? Input from ACCC cancer program members like you! To help spread the word to ACCC members about opportunities to contribute to the journal and how Oncology Issues’ content can be leveraged to benefit your program, this year’s National Oncology Conference will feature a new agenda item – “Oncology Issues Live!” hosted by members of ACCC’s Editorial Committee. Interesting in learning more about contributing or having your program featured in Oncology Issues? Want to be part of the Editorial Committee? Come to “Oncology Issues Live!” at the ACCC 33rd National Oncology Conference, October 19-21 in St. Louis, and connect with us.