Category Archives: Education

Creating a Caregiver Toolkit: 24 Tips for Caregivers

This is the final post in a two-part series on creating a toolkit for caregivers.

By Tricia Strusowski, MS, RN

Hands offering supportA recent symposium on Palliative Care in Oncology also called attention to the importance of ensuring that the needs of cancer patients’ caregivers are recognized. “Despite providing essential home and healthcare services, cancer caregivers are underserved and undervalued while facing a multitude of unmet needs,” said J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham School of Nursing. “There are 2.8 million cancer caregivers performing a variety of invaluable and time-consuming tasks that can take a marked toll on their physical and mental health.”1  Caregivers are tasked with daily activities in the home and at work, potentially child/elder care, appointments, transportation, medication administration, meals, and medical procedures needed by the patient just to name a few.  We need to ensure that we are discussing the needs of the caregiver, as well as those of the patient, on a routine basis.

As navigators, we can provide education information for caregivers, support groups, or educational programs.  Make the caregiver a high priority in your navigation program.

Here are 24 practical tips that patient navigators can share with caregivers to help them through the process.

  1.  Give yourself and your loved one time to adjust to the diagnosis.
  2.  A positive attitude is beneficial for you and your loved one.
  3.  Giving care to a loved one with cancer requires patience, flexibility, courage and a good  sense of humor.
  4.  Good communication is essential to learning how to best work with your loved one.
  5.  Plan special times together away from the routine of treatment, such as a special evening  out for dinner, a movie or play, etc.
  6.  Talk about the future.  Hope is very important.
  7.  Being a caregiver can reveal hidden strengths and enrich your family life.
  8.  As a caregiver, you can choose to take the primary caregiver role or, depending on the level  of support from family and friends, divide it between two or more persons.
  9.  Being a caregiver can affect you emotionally, physically, and financially. For guidance, speak  with your cancer program’s social worker.
  10.  To better understand your loved one’s diagnosis, treatment and progress, be an active  participant during clinic visits.
  11.  Stay organized (e.g., use a journal or notebook during your loved one’s appointments).
  12.  Encourage your loved one to engage as much as possible in normal daily activities.
  13.  Give yourself permission to feel emotions about your loved one’s situation, and confide in a  friend or counselor who can provide insight and support.
  14.  Set up a list of activities that your family or friends can sign up to do weekly or monthly.
  15.  To help reduce your stress, make time for regular exercise, meditation, or some other form  of relaxation.
  16.  If care is long-term, arrange for extended periods of relief (e.g., take a vacation).
  17.  Attempt to maintain as much of your routine as possible, but recognize that you may need  to alter some of your daily activities if you are the primary caregiver.
  18.  Take advantage of caregiver support groups and credible websites for resources and  support.
  19.  Taking care of YOU is important too. Get adequate rest and nutrition, and take time for  personal care.
  20.  Select funny movies to watch together. Good humor is healthy for the body and soul.
  21.  Allow yourself private time to do nothing, or something important to you.
  22.  Spiritual support through prayer or the guidance of a spiritual leader can be good  medicine.
  23.  Designate a family member or friend who can help field phone calls regarding your loved  one’s progress.
  24.  If you have children in the home, assign them age-appropriate tasks to accommodate the  necessary changes in the household routines.

Source:  http://cancer.ucsd.edu/coping/resources-education/Pages/patient-tips.aspx
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1 Doyle C. Palliative care for caregivers: Implementing caregiver support programs. Oncol Pharm. November 2016;(9)6. Available online at http://theoncologypharmacist.com/ton-issue-archive/2016-issues/november-vol-9-no-6/16928-palliative-care-for-caregivers-implementing-

Other Caregiver Resources are available from:
American Cancer Society
National Cancer Institute

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Patient-Centered Cancer Care: Personal Pain Goals

By Susan van der Sommen, MHA, CMPE, FACHE

Stethescope with idea light

Pain relating to a cancer diagnosis is one of the most feared symptoms by patients. Pain is subjective and can be attributed to multiple factors: spiritual beliefs, physical pain, and psychological, or social issues. Additionally, pain is a common occurrence that can dramatically affect a patient’s quality of life during and after cancer treatment.

A 1993 study performed by the Eastern Cooperative Oncology Group  (ECOG) notes that 86% of practitioners felt their patients were under-medicated for adequate pain control and only 51% felt their practice controls patients’ pain effectively. Poor pain assessment, a practitioner’s reluctance to prescribe, and a patient’s unwillingness unwillingness to take the medication were reported as barriers.

More recently, in 2014 the Journal of Clinical Oncology published a landmark study by David Hui and Eduardo Bruera that discusses an evidence-based approach to personalized pain assessment and management that engages patients in identifying a personal “pain goal” they find acceptable.

As cancer programs and clinicians strive to improve upon the delivery of patient-centered oncology care, the need for continuing practitioner and patient education related to management of cancer-related pain is clear.

Education was one of the many factors considered by the team at Park Nicollet Oncology Research and Health Partners Institute in Minneapolis, Minnesota, when they instituted their quality improvement (QI) initiative in 2014 focused on pain control in their cancer patient population. Patient satisfaction and out-of-pocket costs for patients were other factors, as they realized that they weren’t meeting their patients’ goals with regard to their level of pain control and that the high cost of some pain medications was resulting in high out-of-pocket costs for patients. The ultimate goal of the Park Nicollet team was to improve their patients’ quality of life through improved pain control and minimizing side effects while curbing out-of-pocket costs.

One of the most innovative and patient-centered approaches Park Nicollet took in its QI initiative was documenting a patient’s personal pain goals. A study published in 2012 notes that the assessment is entirely feasible in a busy outpatient setting and that patients are fully capable of establishing their desired pain relief on a scale of 1-10. The team at Park Nicollet experienced the same results. They increased documentation of their patients’ personalized pain goals from 16% to 71% in one year. Today, approximately 85% of patients report that they have achieved their pain goal. Read the full story of their experience here.

Allowing patients to determine their comfort level – with the appropriate education, of course – is one more way cancer centers can put their patients at the center of their care and encourage genuine shared decision-making.


Contributing blogger Susan van der Sommen, MHA, CMPE, FACHE, is Executive Director, DSRIP, Bassett Healthcare Network, and Chair of the ACCC Editorial Committee.

Patient Navigation: Creating a Toolkit for Caregivers

The first post in a two-part blog series focused on support for caregivers.

by Tricia Strusowski, MS, RN

Two hands offering support

Several years ago, I facilitated a Patient and Family Advisory Council at our cancer center.  Our patients and families provided us with great insight on our program and helped us create our yearly goals.  On one occasion, one of our family members said, “Hey, what about us? The patients get these great journals, but we need resources too.”  This became our next project.  Two important takeaways from our experience:

  • Don’t Reinvent the Wheel: In creating a toolkit for caregivers, first keep in mind that there are excellent caregiver resources available through national organizations, so there is no reason to reinvent the wheel.
  • Be Concise: Keep your information short, educational, and practical. Our advisory council and countless focus group participants at many cancer programs have said, “Don’t give us so much information! If I get too much, I don’t read anything.”

For navigators interested in putting together a caregiver toolkit, read on for some basic but very good information to share with caregivers.

Remind caregivers that “the care you give yourself is the care you give to your loved one.” The stress of caregiving can take an emotional and physical toll. Caring for someone you love with cancer is undoubtedly difficult. The stress of caregiving can often manifest itself both emotionally and physically.  While caregiving is a rewarding experience that can strengthen the bond between you and your loved one, 60 percent of caregivers report symptoms of depression and other painful signs of strain.

Physical effects of caregiving can include:

  • Sleep disturbances
  • Weight fluctuation
  • Fatigue
  • Stomach/digestive problems (cramping, constipation, gas, heartburn, etc.)
  • Headache
  • Weakened immune system
  • Skin changes

Emotional effects of caregiving can include:

  • Depression
  • Anxiety
  • Feeling of isolation
  • Withdrawal
  • Substance abuse
  • Mood swings/irritability
  • Lack of concentration/memory

While your main concern is surely that of your loved one, it’s vital to care for yourself as well during this difficult time. If you experience any of the symptoms listed above, contact your physician and ask what your healthcare provider suggests. Fatigue is usually the first and most common complaint of caregivers, so ask your doctor about effective ways to manage your fatigue.

Encourage caregivers to ask for help. Provide some practical tips, such as the following:

  • You may have had offers of help with everyday tasks such as running errands, getting groceries, making a meal, taking your loved one somewhere, etc.  At first, most people are reluctant to accept these offers. Consider that friends, family, and neighbors really want to help. People will often say, “If there is anything I can do, let me know.” Take advantage of the offer!
  • When asking someone for help, you may want to go over a list of things you need assistance with, letting them choose what they’d like to help with.
  • Some people report being the sole caregiver serves to increase stress and may cause tension within the family. One caregiver’s solution to this problem was to create a weekly calendar where family members could record the tasks they performed for their mother with cancer. This way, tasks could be spread out evenly among her children.

Offer some coping strategies for the caregiver, including:

Set Boundaries. Primary caregivers tend to absorb the entire caregiving role. Care recipients often go along with this, preferring the care of the primary caregiver to that of a less familiar family member or a stranger.  You cannot do everything; set limits on what you can do yourself and what tasks can be delegated to others.

List things you need for self-care. Make a list of activities that will provide a pampering break from your caregiver responsibilities. Give your morale a boost by such activities as taking a hot bath, exercise, going out for a meal, or reading a book.  Post this list as a reminder to yourself and others in the household.

Plan for respite care. Obtaining those short breaks for self-care requires a plan for others to care for your loved one. Your plan should include the type of care required, hints/suggestions on giving the care so that routines are not severely altered. The plan should also include how often and for how long a time period the respite caregiver will be used.

Make time for laughter. A funny movie, a visit from a fun-loving friend, reading a book authored by a humorist, sharing a good joke can really help lighten things up. Humor helps keep frustration in perspective and minimize anger.

Keep in touch with friends. When caring for a loved one, the primary caregiver’s social life is often the first thing to go. You may think you do not have either the time or energy for keeping up with friends; however, it’s been shown that caregivers who remain socially active experience less depression and physical illnesses. Socially active caregivers are less overwhelmed by the responsibilities than their counterparts who turn down social invitations and lose contact with friends.

Shift gears. When you begin to feel rushed, you need to slow down. Researchers have found that hurrying often actually slows down caregiving activities. For example, rushing can led to delays caused by dropping items, spilling liquids, and misplacing keys, just to name a few. Try to slow down during caregiving and take time to relax throughout the day.

Keep it in perspective. Take time to read the morning paper or listen to the news. Staying abreast of what is happening in your community and the world helps put your problems in perspective. If the major topics of conversation in the house are focused on the health and care of your loved one, plan to set time aside when the conversation centers on some other topics. Mealtime is a time when this works well. Everyone participating in the meal can agree in advance to discuss other topics.

Plan for occasional indulgences and rewards. We all need some occasional pampering to maintain both physical and mental health.  Take time for your favorite snack, listen to music, or just take some “alone time” and enjoy whatever makes you smile.

Join support groups.  Members of a support group offer you understanding at a level others cannot because they are going through a similar experience.  They have real-life experiences to share including tips on how to cope.

Source: Caring to Help Others, A Training Manual for Preparing Volunteers to Assist Caregivers of Older Adults, 2000.


Stay tuned for Part Two: 25 Tips for Caregivers.

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Journeying Beyond the Physical: Addressing a Patient’s Spiritual Concerns

By Susan van der Sommen, MHA, CMPE, FACHE

HC provider cupping patients hand (for web)Based on evidence presented in the Institute of Medicine’s 2008 report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,” the American College of Surgeons Commission on Cancer (CoC) has phased in a new standard – 3.2: Psychosocial Distress Screening. The goal of utilizing a psychosocial distress screening tool is to ensure patients’ emotional and psychological needs are being addressed – in addition to their physical disease and symptoms.  CoC Standard 3.2 includes the following description of the psychosocial assessment:  “This assessment will confirm the presence of physical, psychological, social, spiritual [emphasis added], and financial support needs and identify the appropriate referrals as needed.”

In an article published in the March/April 2017 edition of ACCC’s journal Oncology Issues, the Reverend Lori McKinley outlines how Mercy Health lived up to its promise to “make lives better – mind, body and spirit” by incorporating a rating for various spiritual concerns of a patient or loved one. The Spiritual Care Team at Mercy recognized that just addressing emotional and physical needs of patients is not enough.  After performing an extensive literature review and developing connections with community-based organizations, the Mercy team made significant quality-related, evidence-based changes to their electronic health record (EHR) to accommodate a new and improved distress screening tool. Learn more about their pilot project here.

Indeed, a patient’s spirituality is directly related to their quality of life and has a direct correlation to giving  patients meaning, a sense of purpose and understanding during a critical time in their lives. In “Spirituality in the Cancer Trajectory,”  author C.M. Puchalski writes that “Spirituality is an essential element of person-centered care and a critical factor in the way patients with cancer cope with their illness from diagnosis through treatment, survival, recurrence and dying.” Her article goes on to identify the link between spirituality and “inner peace, gratitude and positivity” when facing a life-changing diagnosis such as cancer. She writes that with proper support, a patient may begin to view their cancer diagnosis as a positive life-changing experience, ultimately paying greater time and attention to higher priorities in their lives. This is not possible if a patient’s spiritual needs are not addressed routinely throughout their care.

Puchalski further points out that religion is but one type of expression of spirituality so non-faith based organizations should not dismiss the concept or its importance. In fact, she writes, a majority of patients want their oncologist or healthcare professional to address their spiritual concerns and integrate their needs and wishes into their care plan.

Not surprisingly, this is what the Spiritual Care Team at Mercy discovered during their pilot program. With the addition of four questions addressing spiritual concerns in their distress screening tool, they were able to more effectively connect patients with their faith, alleviate fears, and assist patients with addressing their trepidation at the end-of-life. Isn’t that what all of us want for our patients?

Reference

Puchalski CM. Spirituality in the cancer trajectory. Ann Oncol. 2012;23(suppl_3):49-55.


Contributing blogger Susan van der Sommen, MHA, CMPE, FACHE, is Executive Director, DSRIP, Bassett Healthcare Network, and Chair of the ACCC Editorial Committee.

 

Oncology Social Workers’ Role in Patient-Centered Care

By Fran Becker, LCSW, OSW-C

JPG-2017SWM-LogoWebMarch is National Social Work Month.  This year, the National Association of Social Workers’ theme is “Social Workers Stand Up.”  This is a time to acknowledge the contributions of all social workers.  Some social workers are part of a team, others work independently—all are patient centered in their approach to care.  Oncology social workers are part of this proud group—but our work differs in several ways.  While master’s degree prepared social workers are trained in assessing the psychosocial needs of their clients and in provision of a range of services, oncology social workers often have additional expertise and specialized clinical training in the meaning and impact of a cancer diagnosis on patients and their families.

Oncology social workers must have a working knowledge of cancer treatments, the side effects of treatment, and the psychosocial impact on the patient and family.  This skill set is a broad one, especially for those working in community cancer centers who are called on to help patients and families at all stages of illness and diagnoses. Oncology social workers may assist patients with a wide range of concerns, including issues faced by patients at high risk of cancer, those newly diagnosed, patients in active treatment, as well as helping with survivorship, palliative care, and end-of-life issues.

Oncology social workers need to be knowledgeable about individual and family coping styles, resources, clinical interventions, and employ a myriad of other skills to help patients and families manage the multidimensional (emotional, financial, and physical) impact of a cancer diagnosis through their long journey. This management can range from distress and depression screening to assisting with transportation issues. It can encompass educating patients (and their caregivers) about stress management and self-care. It can entail working with parents on how to talk about cancer in an age-appropriate way with their children or with employees on how to discuss their needs with their employers, and extend to finding community resources to assist with a number of problems.  And, at times, it is sitting with a family facing the loss of a beloved family member.

Key to success as an oncology social worker is the ability to be present, to engage open-heartedly with empathy and compassion, to start where the patient is, focus on hearing the patient and/or family needs, and helping them to meet those needs, which may range from a simple referral to managing complex multidimensional issues.

I often hear—“Your job must be very hard, I don’t know how you do it.” In my career as an oncology social worker, one of the most important things that I’ve learned after 30 years of working with cancer patients and their families is that it is a privilege to walk alongside them during their journey, whatever the outcome.  There are fears and tears, but laughter and warmth, too. To me, oncology patients and their families are role models of courage and grace in the face of an often traumatic and life-changing experience.

As we join in marking National Social Work Month, I would like to acknowledge my fellow oncology social workers and say “thank you” for your contributions as part of the multidisciplinary cancer care team.


Guest blogger Fran Becker, LCSW, OSW-C, is manager of Cancer Support Services, Carl & Dorothy Bennett Cancer Center, Stamford Hospital, and a past member of the ACCC Board of Trustees.

ACCC thanks all oncology social workers for their efforts as part of the multidisciplinary team delivering patient-centered care in cancer programs across the country.

Navigation Metrics & Value-Based Care: Measuring Up

By Tricia Strusowski, RN, MSN

Compass pointing at answers-SMALLAs the move to value-based care and Alternative Payment Models (APMs) continues, oncology patient navigators need to become more business savvy and have a full understanding about value-based cancer care metrics.  Case in point: Medicare’s Oncology Care Model (OCM) pilot, the first oncology-specific alternative payment model developed by the Center for Medicare and Medicaid Innovation (CMMI). Data collection and reporting metrics are integral elements of this five-year pilot program, which seeks to achieve higher quality, more highly coordinated care, and smarter spending.

The challenge: Navigation programs lacked strong evidence-based metrics to demonstrate the impact of navigation on the key areas of quality, coordination, and cost-effectiveness.

The good news: the Academy of Oncology Nurse & Patient Navigators (AONN+) recently released 35 evidenced-based metrics in the key categories of patient experience, clinical outcomes, and return on investment.

These metrics were developed using the AONN+  evidence-based Navigation General Certification Domains:

  • Community Outreach and Prevention
  • Coordination of Care/Care Transitions
  • Patient Advocacy/Patient Empowerment
  • Psychosocial Support Services/Assessment
  • Survivorship/End of Life
  • Professional Roles and Responsibilities
  • Operations Management/Organizational Development/Healthcare Economics
  • Research and Quality Performance Improvement

The metrics were developed so that any cancer program or practice can utilize them regardless of the navigation model in place.  The goal in providing these standard metrics is for cancer programs and practices to use them “as a baseline to prove the efficacy and sustainability of their [navigation] programs.”1 Learn more and access metrics.

Partnering to Advance Value-Based Cancer Care
As oncology providers work to improve care coordination and demonstrate delivery of patient-centered, efficient, quality care, patient navigators can play an important role in establishing connections by partnering with physician practices.

For example, navigators can integrate with physician practices to:

  • Increase efficiency and timely access to services by providing comprehensive assessments and referrals to appropriate disciplines
  • Reinforce patient education and empowerment through decision aids and patient appointment checklists
  • Create standing order sets, physician profiles, pathways, and guidelines
  • Increase support for clinicians, i.e., provide early discussions about palliative care, goals of care, advance care planning, and pre-habilitation
  • Increase contacts with “frequent flyers” to decrease ER visits and avoidable admissions
  • Provide automatic referrals to financial counseling at time of diagnosis (generate self-referral reports)

On Thursday, March 30, I will present a more in-depth look at the potential for “Creating Partnerships Between Oncology Nurse Navigators & Oncology Practices” in a session at the ACCC 43rd Annual Meeting, CANCERSCAPE.  The oncology landscape continues to evolve at a rapid pace.  I believe now is the time to explore how navigators can support value-based care initiatives with physician practices, as we all work to keep patients at the center of care delivery.

I hope to see you at CANCERSCAPE, March 29-31, 2017, in Washington, D.C.

Reference

1 Strusowski T, Sein E, Johnston D. Academy of Oncology Nurse & Patient Navigators Announces Standardized Navigation Metrics. J Oncol Nav Survivorship. 2017; 8(2):62-68.

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ACCC member Tricia Strusowski, RN, MSN, is a consultant with Oncology Solutions, LLC, with 20 years of experience in patient navigation.

Does Your Cancer Program Have a Registered Dietitian?

March is National Nutrition Month, the ideal time for ACCCBuzz to spotlight the role a Registered Dietitian Nutritionist (RDN) plays in the delivery of high-quality, patient-centered cancer care.

By Kelay E. Trentham, MS, RDN, CSO

Heartshaped Fruits and Vegetables-smDo you have a Registered Dietitian Nutritionist (RDN) in your cancer center? If not—or if your RDN staffing is limited—you may be interested in what an RDN can do for your patients.

First, Some Background

What does it take to earn the RDN credential? To be a Registered Dietitian Nutritionist, you must first obtain, at a minimum, a bachelor’s degree in Nutrition from an accredited program. Next, you must complete a minimum of 1,200 hours of RDN-supervised practice in various settings including clinical, community, and food service rotations, among others. In the near future, a master’s degree will be the minimum required education, and currently many master’s programs are combined with internships. Finally, you must pass a registration examination before using the RDN credential. In some states, RDNs must also be licensed – which is denoted by the LD (licensed dietitian) or LDN (licensed dietitian nutritionist) credential.

Once you’ve earned the RDN credential , you must complete 75 units of continuing education every five years to maintain it. There are five RDN specialty certifications, one of which is for oncology. The CSO credential indicates that an RDN is also a Board Certified Specialist in Oncology. The CSO credential is earned by passing the CSO specialty examination, which is administered by the Commission on Dietetic Registration. To be eligible to sit for this exam, RDNs must have been practicing for at least two years and must be able to document 2,000 practice hours in oncology within the past five years. The CSO credentialing exam must be retaken every five years.

What Does an RDN Do?

Assessment. At a minimum, the RDN employs the nutrition care process and provides medical nutrition therapy (MNT) to patients deemed at malnutrition risk. The nutrition care process involves nutrition assessment, diagnosis, and intervention, as well as monitoring and evaluation. Nutrition assessment is the evaluation of a patient’s diagnosis and co-morbidities, anthropometrics, laboratory values, nutritional intake, psychosocial, socioeconomic, and cultural factors as well as a physical assessment. During a nutrition-focused physical assessment, the RDN notes changes in muscle and fat tissue, skin, hair, nails, and other physical indicators of macro- or micro-nutrient deficiencies.

Diagnosis. The assessment process leads to nutrition diagnosis: the determination of specific nutrition-related problems to be addressed such as malnutrition, altered gastrointestinal function, or impaired nutrient utilization. RDNs use standardized language for nutrition diagnoses, and indicate the etiology and related symptoms of the stated problem.

Intervention. With the assessment and diagnosis complete, the RDN next determines nutrition interventions to address the identified problems – such as diet modifications, oral nutrition supplementation, or enteral or parenteral nutrition support. Finally, the RDN will regularly monitor patients and evaluate the effectiveness of the interventions. The nutrition care process is ongoing until nutritional problems resolve or stabilize.

Nutrition Matters

Studies show that adult cancer patients with poor nutritional status experience decreased tolerance to cancer treatment, higher hospital admission or readmission rates, increased length of hospital stay, decreased quality of life, and increased mortality. A number of studies recommend that nutrition intervention for cancer patients be provided by an RDN, and others indicate that nutrition education on use of foods to maintain nutritional intake yields better quality of life over simply recommending oral nutrition beverages. Ideally all cancer programs would employ a validated nutrition screening tool, such as the MST or PG-SGA, to identify patients at malnutrition risk and refer those patients to the RDN for medical nutrition therapy. Indeed, the 2013 Oncology Evidence Analysis project of the Academy of Nutrition and Dietetics recommends these very practices: malnutrition risk screening (and rescreening), with referral of those who screen at risk to an RDN for MNT.

Engaging the Patient

In addition to identifying and treating or preventing malnutrition, a primary role for the RDN is the provision of patient education on topics ranging from dietary strategies for side-effect management to the pros and cons of vitamin, mineral or botanical supplement use during treatment to the efficacy (or lack thereof) of popular ”cancer diets.”  RDNs assist the healthcare team in identifying patients who would benefit from enteral or parenteral nutrition support during treatment, and can educate patients regarding the logistics of this therapy. RDNs can provide care coordination and navigation services when nutrition support is an integral part of treatment, for example, for patients with head and neck and esophageal cancers. The RDN may also address nutrition-related long-term and late effects of cancer treatments.  RDNs can play an important outreach role in educating patients and the community about evidence-based diet and lifestyle approaches for cancer prevention and survivorship.

The Bottom Line?

Malnutrition impacts patient outcomes, cost of care, and importantly, your patients’ quality of life. Nutrition care is a crucial component of the provision of not just adequate, but of high-quality, patient-centered cancer care. The RDN is your nutrition expert and should be an integral part of the multidisciplinary care of patients undergoing treatment in your cancer program.


ACCC member Kelay E. Trentham, MS, RDN, CSO, is 2016-2017 Chair, Oncology Nutrition Dietetic Practice Group of the Academy of Nutrition and Dietetics. She is Oncology Dietitian at the MultiCare Regional Cancer Center in Tacoma, Washington.

 

What’s in a Name? Is “Tumor Registry” an Outdated Term?

By Holly J. Kulhawick, CTR

Jigsaw puzzle question mark-smThe National Cancer Registrars Association (NCRA) recently asked members on its Facebook page, “Is tumor registry an outdated term?” The responses were spirited and detailed the ways tumor registry and the Certified Tumor Registrar (CTR) credential can be confusing. For example, NCRA members noted that some of their colleagues and patients think they help patients register for treatment or that a CTR “certifies” tumors. There was a strong sense that the current terminology belittles what cancer registrars do, or gives the impression the work is less technically sophisticated than it is. In a time when registrars are struggling to defend the profession from automation and the fear that this automation will compromise data quality, the Facebook discussion suggested the time has come for the profession to revisit its terminology.

First, the term tumor is outdated on a number of fronts. Cancer registrars track more than tumors. They collect information on blood cancers and some benign and premalignant conditions. Second, the term tumor registrar is confusing. What does a “tumor registrar” do? A more descriptive term, such as Oncology Data Analyst or Oncology Data Manager, explains in three words the actual work of a registrar. Many NCRA members suggested this would help to emphasize the analytical aspects of the job and allow them to highlight to hospital administrators the role they play in supporting the cancer program and other oncology support services. Some facilities are already taking the lead, re-naming their Cancer Registry Department as the Oncology Support Services Department and updating their staff titles to Data Analysts. For some real-world examples of how CTRs can support an organization’s cancer program read “Unlock the Potential of the Cancer Registrar” (Oncology Issues, January/February 2016).

The Facebook posts also noted that the lack of clarity associated with “tumor registrar” does not help a profession that struggles to be recognized. A clear, concise title would go a long way to help elevate the work in the eyes of other health professionals. A change in terminology may also help with the Physician Quality Reporting System (PQRS), which is a quality reporting program that encourages individual eligible professionals and group practices to report information to Medicare on the quality of care. A title such as Oncology Data Analyst or Oncology Data Manager flags the cancer registrar as someone who can assist with PQRS requirements, helping to advance the role of the registrar.

A name change would also help with the general public. Some registrars noted that they have spent time explaining to patients that they are not the hospital staff to help them register for chemotherapy. A more direct or clear term would help to eliminate this confusion. The concept of registration—while reflecting accurately the work of a CTR—makes some patients nervous. When they learn they are part of a large cancer registry, they want no part of it, believing it is too much government oversight. If the terminology were changed to Oncology Data Analyst or Oncology Data Manager, it might better convey that skilled and certified professionals are collecting the data and its use is highly regulated and needed to advance cancer care and treatment.

The Facebook discussion suggested there is strong agreement on possible new terminology: Oncology Data Analyst or Oncology Data Manager. But what are the next steps? The National Cancer Registrars Association (NCRA) established a task force in 2008 to study the issue. At that time, there was insufficient member support to make a change. If members want to bring the issue to the forefront again, they can use NCRA’s formal process for members to be heard through its Advocacy and Technical Practice Directors (ATPDs). These board members serve as the liaisons between members and NCRA on matters of advocacy and technical practice. Interested members can go to the Raise Your Voice webpage to contact their ATPD to get the process started.


Guest blogger Holly J. Kulhawick, CTR, is Remote Abstractor for HCA/Methodist Healthcare San Antonio and Flatiron. 

Learn more about the pivotal role your cancer registry can play in supporting your cancer program, during a session on how to “Improve Your Data Collection—Streamline Your Accreditation & Quality Reporting Processes” at the upcoming ACCC 43rd Annual Meeting, CANCERSCAPE, March 29-31, in Washington, D.C.  Read the full agenda here

 

On the Road to Value-Based Care: Operational & Cultural Change

By Monique J. Marino, Senior Manager, Publications & Content, ACCC

2017-Open-Road-smWhile there can be no single roadmap for transitioning to value-based care, a panel session at the 2017 Cancer Business Summit, February 6-7, 2017, co-hosted by the Association of Community Cancer Centers, focused on  Operational & Cultural Change  that can help cancer programs move forward on the path ahead.  Sarah Chavarria, Chief People Officer, NantHealth, shared that successful organizational alignment is centered around these key concepts:

  • Strategy: mission, vision, and values; organizational goals; brand.
  • Structure: placing the right talent in the right role; holding people accountable for meeting organizational goals.
  • Talent: managing against a set of value-based competencies; assessing, developing, and growing the “best and brightest.”
  • Rewards: creating incentives that drive collaboration to deliver on organizational goals; these incentives should be flexible in design to attract and retain top talent—in other words, identifying what your employees value so that the organization can package them and reward behavior they want.
  • Systems and processes: these should enable decision making and responsiveness, and support effective execution.

“Cancer programs should create a ‘Deliberate Culture,’” Chavarria concluded. “If you are not deliberate in defining your culture, it will just happen; and it will not be what you want.”

Panelist James Grayson, a High Reliability Organization Specialist at West Cancer Center, outlined five key steps to help cancer programs succeed operationally and culturally:

Step. 1 Set your bar higher than everyone else’s.

Step 2. Hire people with potential.

Step 3. Invest in your front-line management team.

Step 4. Invest heavily in safety, risk management, leadership, and talent development.

Step 5. Be the cancer program your patients and staff need you to be.

Rounding out the panel was 2017 Cancer Business Summit Innovator Award Winner, Barry Russo, MBA, Chief Executive Officer, The Center for Cancer and Blood Disorders, who told attendees about the steps his cancer program took to move to value-based care, including:

  • Centralizing patient intake from 9 practice locations to 1 location, streamlining and improving care coordination.
  • Establishing triage as its own business unit.
  • Implementing an internal case management program to facilitate proactive intervention and risk stratification of patients.
  • Growing supportive care services (an effort that requires continual identification of new funding avenues), such as palliative care, chaplaincy services, nurse navigation, survivorship, etc.
  • Implementing a new patient education program.
  • Identifying technology gaps and improving decision-support around data and analytics.
  • Developing communication tools around value-based care to share with employer and payer communities.

To help cancer programs prepare for the change to value-based care, Russo offered five high-level takeaways:

  1. Deliver a consistent message; identify the changes needed and understand how to make these changes.
  2. Establish a new norm—while still a physician-centric care delivery model, ALL members of the care team are essential to healing lives after cancer. Value-based care requires cultural change and significant organizational re-engineering.
  3. Understand that staff and clinician education is a journey and not a destination. Accept that leadership must focus on education, re-education, and then more education. Effective team building requires repetition—leadership rounds, nursing forums, regular reports from pillars in the cancer program, etc.
  4. Be aware that nursing needs a hyper-focus. Nurses enjoy the most touch points with patients, so nursing stability is of the utmost importance to successful cancer programs.
  5. Build strong teams at EVERY level of the organization; teams that can process constant change. The move to value-based care is not for the faint of heart. Staff must be able to accept feedback; brutal honesty is essential to the process. Staff must accept that the move to value-based care means change is interrupting their day, not making it easier.

Learn more about what lies ahead for value-based care at the ACCC 43rd Annual Meeting CANCERSCAPE, March 29-31, 2017, in Washington, D.C. Join your peers to hear from leading experts and decision-makers about the evolving healthcare policy landscape, the latest on alternative payment models, data collection and quality measures, and more. Explore the meeting agenda here.

 

Enhancing the Value Proposition: Embedding Palliative Care Services in the Oncology Setting

By Susan van der Sommen, MHA, CMPE, FACHE

nurse and patient holding hands 2In a feature article in the January/February edition of Oncology Issues, Patsy Astarita, LCSW-C, OSW-C, and Michelle Abramowski, MSN, CRNP, share how the Kaufman Cancer Center in north central Maryland developed a palliative care program from the inside out. Though the existing infrastructure of the Kaufman Cancer Center included some palliative care resources, their challenges in developing the program were similar to those faced by other cancer programs: a dearth of existing funding, a navigation program focused on newly diagnosed patients rather than those at the end of life, and limited outpatient palliative care resources, among others.

Despite these challenges, the interdisciplinary care team at Kaufman Cancer Center garnered the requisite leadership support, performed a literature search of evidence-based best practices, and, building upon their existing resources, developed a palliative care program that has met its stated goals: reducing hospital use of chemotherapy at the end of life, while increasing early referrals to hospice and advance care planning. In 2016 Kaufman Cancer Center was recognized with an ACCC Innovator Award for their forward-thinking efforts expanding access to palliative care.

Often confused with hospice (utilized for end-of-life care), palliative care services are intended to provide a patient-centered approach to anticipating—and  thus reducing—pain and suffering, while improving quality of life by addressing the physical, social, emotional, and spiritual needs of the patient and family. According to a study performed by the American Society of Clinical Oncology (ASCO) Ad Hoc Palliative Care Expert Panel, patients with advanced cancer should receive “dedicated palliative care services” within eight weeks of diagnosis, offered concurrently with active treatment. The same study suggests that palliative care services offered early in the treatment process promote clarification of treatment goals, assistance with medical decision-making, enhanced care coordination, and a reduction in stress for the patient, family, and caregivers. Another benefit of introducing palliative care services early in the treatment process is cost reduction and savings through reduced hospital readmissions and emergency room use in the last 30 days of life.

To streamline their processes, the team at Kaufman Cancer Center developed a palliative care screening tool very similar to the psychosocial distress screening tool that has become familiar to most cancer programs in the United States. The five-question palliative care screening tool, now embedded in their EHR, has a 13-point scale that assists the care team in determining if the patient is appropriate for a palliative care referral. Embedding these services into their workflow is further enhanced by a weekly Palliative Care Conference during which team members discuss and review cases to determine next steps for patients and their family and caregivers. Also included in their ongoing programmatic development is a resiliency program to help support their staff as they work with patients during vulnerable times in their lives.

When working to initiate or expand palliative care services in the outpatient setting, most cancer programs face a host of challenges: lack of resources and/or budget; multiple, and sometimes conflicting, priorities; disparate and often disconnected programs. Despite these challenges, the team at the Kaufman Cancer Center did what cancer programs do best: put the patient at the center of their planning processes and developed a program that has improved care and satisfaction while reducing costs.


Contributing blogger Susan van der Sommen, MHA, CMPE, FACHE, is Executive Director, DSRIP, Bassett Healthcare Network, and Chair of the ACCC Editorial Committee.

Learn more about the ACCC Innovator Awards program here.