Tag Archives: patient-centered care

Creating a Navigation Intake Assessment Tool

By Tricia Strusowski, MS, RN

Compass pointing at answers-SMALL      “I want to be aware of the navigator and support services as soon as possible.”

This is a frequent response from patients when asked about the optimum point in the cancer care journey to learn about navigation and support services.

And yet, during a first visit (or intake interview) with a patient, navigators may question how much to review. Where is the balance between too much information and not enough?  Based on my experience in care coordination and patient navigation, here’s my perspective on creating and using an intake assessment tool.

Number 1 Rule:  Assess if the patient is ready for this discussion. First, provide support. Let the patient and his or her family take lead in the conversation. Listen. Then, based on your assessment, ask the patient and family if they are ready to review the support services and their specific needs. Once you receive their permission, you can then initiate the intake assessment process.

Each cancer program should have a consistent process for assessing and educating patients and families about the cancer program and support services.  A well-crafted intake assessment tool can be used for all cancer disease sites and should include the following:

  • Role of the navigator and the support staff at your cancer center
  • Mini assessment of immediate support service needs
  • Preferred learning style for education
  • Questions that prompt a conversation on what the patient knows about his or her cancer
  • Questions to elicit from the patient specific concerns, goals, and family concerns
  • Family, medical, and surgical history
  • Mini symptom and behavior risk assessment
  • A listing of national and community resources (usually included in patient’s treatment journal).

Gathering this essential information at the time of your initial visit with the patient will establish a strong foundation for the multidisciplinary team. The navigator’s assessment process is an opportunity to begin the discussion about goals of care and/or goals of their treatment—a pillar for providing patient and family-centered care. Further, identifying patients’ preferred learning style and using it across the continuum sets them up to succeed in understanding their cancer and treatment plan. This information can be shared at tumor conferences, multidisciplinary meetings, huddles, or via email if a secure environment is established.  It is also vital to support the navigator role in educating the patient and family consistently, as well as providing an important resource tool for navigators who may be called on to cover for a colleague. An assessment tool is a key component for a consistent foundation to navigation, but health literacy training and patient education teach-back methods can enhance the process and support staff success in educating patients and their families.

Assessing the immediate needs of the patient and family, while providing education and support, establishes a patient-centered approach and lays the groundwork for a strong bond between the patient, family, the navigator, and the support services.

View a sample navigation intake assessment tool. You are welcome to revise this tool as needed for your cancer program.


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

The upcoming 34th ACCC National Oncology Conference, Oct. 18-20 in Nashville, Tenn., features multiple sessions focused on optimizing patient navigation services to improve the patient experience, and more. View the conference agenda.

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
____________________________________________________________________________________

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.

ACCC Expresses Serious Concern Over the AHCA

By Leah Ralph, Director of Health Policy, ACCC

U.S. CapitolOn May 4, 2017, the U.S. House of Representatives narrowly passed the American Health Care Act (AHCA), a bill that would repeal and replace key portions of the Affordable Care Act (ACA). The bill now heads to the Senate, where it faces significant concerns over the projected decrease in coverage and increase in cost, and will likely undergo a substantial re-write.

While the bill faces uncertainty, the Association of Community Cancer Centers (ACCC) remains very concerned about the impact the AHCA, as currently written, would have on cancer patients’ ability to access comprehensive, affordable health insurance coverage. The bill violates a number of ACCC’s health reform principles, which were central to our recent advocacy efforts on Capitol Hill.

Previous Congressional Budget Office (CBO) reports estimate that 24 million more Americans will be left without coverage under the AHCA, while disproportionately increasing out-of-pocket costs for elderly, low-income Americans in the individual and non-group markets. Recent amendments to the bill also weaken protections for patients with pre-existing conditions, like cancer, and the requirement that insurers cover defined Essential Health Benefits, such as cancer screenings. The current legislation also effectively rolls back the Medicaid expansion and proposes to fundamentally restructure the Medicaid program, inevitably shifting costs to the states and squeezing Medicaid benefits for low-income cancer patients across the country.

ACCC will continue to work with Congress to advocate for meaningful health reform policies that protect patient access to appropriate, affordable health insurance coverage and decrease costs for the patient and the healthcare system.

ACCC urges its membership to contact their Senators opposing the bill as currently written.

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.

Next Steps for Value Frameworks?

by Amanda Patton, ACCC Communications

ACCC17-Value Framework Panel (2)The mantra of “moving from volume to value” is ubiquitous in healthcare today.  So what do cancer programs need to know about evolving value frameworks in oncology? Attendees at the ACCC 43rd Annual Meeting, CANCERSCAPE, in Washington, D.C., heard real-time updates on two of the leading frameworks—ASCO’s work-in-progress Value Framework  and NCCN’s Evidence Blocks™.

Both value frameworks aim to be tools used in support of patient―physician shared decision-making according to panelists Stephen Grubbs, MD, FASCO, Vice President of Clinical Affairs, American Society of Clinical Oncology, and Robert Carlson, MD, CEO, National Comprehensive Cancer Network.

ASCO’s Value Framework was not built on drug pricing, but to have a discussion with a patient on potential financial toxicity and the benefit of the treatment in the context of how much the treatment will cost the patient, explained Dr. Grubbs. ASCO’s framework uses three primary parameters to calculate value: clinical benefit, toxicities of treatment, and cost. “Our goal at ASCO is to develop a tool that could be customized with information for each individual patient,” said Dr. Grubbs.

After receiving more than 400 comments on its original Value Framework draft, ASCO published a revised version in May 2016.  Grubbs made clear, however, that ASCO’s framework is still a work in progress. “It’s not yet ready for use,” he stressed.

In 2017 ASCO is working on improving the framework methodology, Dr. Grubbs explained, noting that a current weakness is that the framework is set up to compare a randomized clinical trial between two different treatments.  “If I have a treatment where I use drug A versus drug B, and than I have a trial that compares drug B to drug C—how do I compare drug A to drug C?” Work is underway at ASCO to address cross-trial comparisons and also to “anchor the net health benefit score in some meaningful way,” Grubbs shared. Finally, ASCO will continue work with patient advocates and patients to identify endpoints that are meaningful for patients.

On the other hand, NCCN’s Evidence Blocks are operationalized. NCCN’s goal was to create a “flexible value system that could be used to develop each patient’s equation for what is valuable,” said Robert Carlson, MD, CEO, National Comprehensive Cancer Network. NCCN Evidence Blocks are built on five metrics:

  • Effectiveness (efficacy)
  • Safety (adverse events, toxicities)
  • Data quality
  • Data consistency
  • Affordability

The Evidence Blocks are presented in a graphic format so that a user can look for “30 different options in about 4 or 5 seconds and come up with regimens that would be optimal for a specific circumstance,” Dr. Carlson said.

Like ASCO, NCCN intends the Evidence Blocks to support a patient-centered approach to integrating a value discussion into everyday practice. “We look at Evidence Blocks as a conversation starter, not an answer,” Carlson said.  “We don’t tell the patient, because the Evidence Block looks like this, this is what you should do. It’s a question of what’s most important to them.”

Currently, 33 of the NCCN guidelines have Evidence Blocks associated with them. By the end of 2018 all of the NCCN guidelines that have systemic therapies should have Evidence Blocks, according to Carlson. NCCN also intends to expand the Evidence Blocks into other treatment modalities. “We are now starting to look at other modalities, radiation oncology, surgical oncology, and diagnostics . . . in terms of the same sort of scales,” he said.

Rounding out the discussion, panelist Ali McBride, PharmD, MS, BCPS, The University of Arizona Cancer Center added perspective on the cost/value discussion as it may unfold on the frontlines of care. “Many patients may not be able to afford the 20% copay cost for IV therapy, let alone the out of pocket cost for many oral therapies,” he said. “We have to spend a lot of time detailing out those costs for patients, and if they can’t afford it, we have to say, then what’s our next step in that guideline pathway?”

All three panelists noted the need for financial transparency for patients and providers as one component of the value discussion.

In closing, panel moderator Christian Downs, JD, MHA, Executive Director, ACCC, asked panelists to consider what the value framework discussion might look like 10 years down the road.

Acknowledging the difficulty of making any predictions about the future shape of the oncology value discussion, Dr. Carlson envisions technology playing a pivotal role. “My own expectation and hope is that within a decade we will have computer-based systems that patients are able to interact with directly and help define and discover their own value system,” he said. Such a system would enable patients to indicate if they were more concerned with neurotoxicity or cardiotoxicity, for example. Plus the system would also have the capacity to query payers so that patients could know the financial impact of their therapy.

Big data (if the promise is realized) may change the face of value frameworks, noted Dr. Grubbs.  The potential of extensive real-world databases will bring “much more information on what happens to patients outside the narrow clinical trial that has the best, the most robust patients. . . [and extend to] what happens in the real-world. . . . if we had a big data system that had all this information about what happened to everybody and you could really home in on what happens to a 75-year-old person who was not in the clinical trial and have the cost data, you might come up with a very different looking value [framework] from what we’re showing you here today.”

Finally, as value frameworks continue to evolve, community cancer programs and practices have an important role to play, panelists agreed.  “There’s a huge reservoir of expertise and experience in community oncology, and we’d love to tap that, to learn from that. [One of the] ways you can help us, is to continually give us feedback in terms of whether we have it right or wrong. . . . talk to us,” Dr. Carlson said.

Dr. Grubbs concurred, adding that community oncologists are key to making value frameworks functional. “When you see this come out, please make comments back to ASCO on how to make this better, because nobody is going to get this right…right from the beginning.”

CANCERSCAPE Kicks Off with Perspectives on Policy and Business

by Amanda Patton, ACCC Communications

Last week’s events on Capitol Hill provided a dramatic backdrop for the ACCC 43rd Annual Meeting, CANCERSCAPE, March 29-31, bringing together hundreds of oncology professionals from around the country for insights, strategies, and perspective in the midst of healthcare reform ambiguities.

Cancerscape 2017-keynote panelIn a keynote session Thursday morning, policy insiders Kavita Patel, MD, MS, of The Brookings Institution, and Dan Todd, JD, Todd Strategy, LLC, shared insights on possible next steps toward Affordable Care Act (ACA) repeal or repair under the Trump Administration. ACCC Health Policy Director Leah Ralph moderated the point-counterpoint discussion covering what went wrong with the House Republicans’ American Health Care Act (AHCA) legislative effort at ACA repeal, mounting political pressures on Capitol Hill, legislative or administrative options to effect ACA repair, flaws in the design of the faltering individual insurance exchanges and what may (or may not) happen next, and whether the Administration will act on the hot button issue of drug pricing.

Cancerscape 2017 keynote panel 2Asked for one final takeaway that attendees should bring back to their programs to help their colleagues understand the policy landscape, Dr. Patel shared this perspective for frontline clinicians and administrators:

“No matter who is the party in power there’s always going to be this emphasis on cost. I don’t see the pressure to decrease costs going away. It may come in the form of programs like MIPS and commercial programs like ACOs and patient-centered medical homes, but as a physician who is in all of those programs, it’s all about having me [as a physician] understand where I’m over utilizing care . . . . If there’s one takeaway . . . it’s not to sit . . . and wait to see how things shake out.” Start looking for where you have unwarranted variation, where you can start implementing programs that actually matter to patients, Dr. Patel advised. “Take back some introspective ability to look at your variation, look at your costs, look at all the things that fall into P & L for administrators and how do you translate that to where clinical care is delivered.”

Dan Todd left attendees with one final advocacy takeaway: “It’s a new Administration with training wheels still on. . . they’ll ultimately get their balance. . . . If you have priorities, educate your congressional members on [them]. . . your voice is really, really important.”

For more, read OncLive’s coverage of the session here.

Conway-The Advisory BoardThe morning’s second session shifted the focus outside the Beltway to explore emerging cancer care delivery trends and potential impact on the business of providing cancer care. Lindsay Conway, MSEd, of The Advisory Board, briefed attendees on The State of Today’s Cancer Programs, highlighting five key trends shaping the delivery and business cancer care delivery:

  • Healthcare reimbursement and reform is at a pivotal point. Uncertainty continues around the future of the ACA and the insurance exchanges.
  • Increasing numbers of cancer patients with comorbidities requiring enhanced care coordination. From 2000 to 2010, the number of Medicare patients with multiple chronic conditions grew 22%. Proactive steps in care coordination for this population include regular distress screening to identify issues early and devising and implementing care maps for navigators.
  • Telehealth technology bringing care to patients where they are. These technologies and emerging patient-centered tools—ranging from real-time virtual visits, to phone apps, to patient portals, to remote patient monitoring—have tremendous capacity for expanding patient access to care
  • Growth of healthcare consumerism requiring cost and quality information. There are growing online resources for healthcare review, cost and quality information. To address consumerism in cancer care, it’s important for cancer programs to provide information to help patients select the right provider and the right services.
  • Genomic medicine is transforming cancer care. With the rapid pace of change in this area, cancer programs are challenged to invest carefully as they move forward to integrate precision medicine into practice.

More coverage on this session is available here.  To learn more about the ACCC 43rd Annual Meeting, CANCERSCAPE,  visit us at accc-cancer.org.

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.

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.

Medicare Oncology Care Model: Opportunities for Social Work Participation

By Fran Becker, LCSW, OSW-C

ThinkstockPhotos-467463476The oncology community continues to follow developments with the Center for Medicare and Medicaid Innovation (CMMI) Oncology Care Model (OCM), a program that aims to improve patient care, efficiency, effectiveness, and lower costs.

As participating cancer programs implement the changes mandated by the OCM, increased responsibilities for social work are clear.  In fact, under the model, the involvement of, and coordination with, social work is needed in a number of areas.

The OCM mandates that all patients receive patient navigation and supportive services during their treatment. These services encompass assistance in a number of areas, including financial, transportation, and facilitation of follow-up services.

As a component of the OCM, Medicare is requiring the documentation of a comprehensive Care Management Plan described in the National Academies (formerly, known as the Institute of Medicine) report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. All patients are to receive a care plan consisting of 13 items.  Among these, there are two areas that call for social work services:

Advance Care Plans – Social work has been involved in these conversations for some time in many settings. In fact, Medicare has revised payment policies to include advance care planning (CPT code 99497; add-on CPT code 99498). While the physician is the primary provider in advance care planning conversations, members of the cancer care team, including social work and other allied healthcare professionals, have an opportunity to be involved in these conversations

Distress Screening – Another important requirement under the OCM is screening for depression during each episode of care. As part of the patient’s care plan, OCM participants are required to screen and document a plan to address a patient’s psychosocial health needs. While many cancer programs screen for distress using the NCCN Distress Thermometer, Medicare has determined that this tool is not sufficient to screen for depression under the OCM, and asks OCM participants to use the PHQ-2 and PHQ-9 for depression screening.  The PHQ-2 self-report asks two questions to determine if a more extensive evaluation is needed.  If the patient scores at a three or above, the patient is asked to complete the lengthier PHQ-9.  During this meeting, if the patient screens in for depression, social work involvement escalates.  Social work has several options for helping patients, including offering counseling services in-house or referral to an outside agency, referral to the patient’s primary care provider, oncologist, or a psychiatrist. Even if the program is providing clinical social work services, follow-up on these referrals is needed to ensure patients follow through. In addition, social work is required to follow the patient to assess improvement or the need for additional services.

Social workers play an important role in helping OCM participating programs succeed under this innovative new model. Practices that are not participating in the OCM should do a self-assessment in terms of their social work capabilities, and their ability to support patients’ psychosocial health needs. As signaled through CMMI’s inclusion of social work and patient navigation services in the OCM model, this holistic approach to cancer treatment is sure to be the future of oncology care.

If you are a participating OCM practice, be sure to join ACCC’s OCM Collaborative, an online community of OCM practices sharing best practices, tools, and tips to succeed in the OCM. Join today.


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.