People diagnosed with head and neck cancers often face significant challenges throughout their treatment journey. Multimodal therapies, while effective, come with a high risk of side effects that can severely impact a patient’s quality of life. Ensuring timely access to and effective utilization of interdisciplinary palliative care and supportive services is crucial, yet often complicated by the complex needs of these patients and their unfamiliarity with the treatment landscape.
The intricate nature of head and neck cancer treatment, combined with potential pre-existing health conditions, can significantly hinder a patient’s ability to complete cancer treatment, maintain functional status, and preserve their quality of life. Declining functional status, escalating malnutrition, and poorly managed side effects can lead to increased healthcare utilization and a more challenging patient experience. Furthermore, the possibility of long-term complications raises concerns about the overall value of cancer treatment success if health and functional status remain permanently compromised.
Optimal cancer care, enhanced patient experience, and improved clinical outcomes are intrinsically linked to the accessibility and integration of interdisciplinary palliative care and supportive services. In head and neck cancer care, fragmented approaches are unfortunately common. Recognizing and addressing these silos presents a significant opportunity to improve the organization of care for these individuals, who are often at high risk of complications and delayed access to palliative care. Clinical oncology standards increasingly emphasize the early integration of supportive and palliative care throughout cancer treatment. These standards underscore that early assessment and intervention are especially critical for patients with high-risk malignancies and advanced disease, such as those with squamous cell carcinomas of the head and neck, the most prevalent pathology in North America. Despite widespread recognition of the vital role of supportive and palliative care in optimizing patient experience and cancer care outcomes for individuals with head and neck cancer, persistent obstacles to early access and comprehensive utilization remain a significant clinical challenge.
Oncology nurse navigators (ONNs), in their increasingly vital role in optimizing cancer care and patient experience, offer a promising avenue for advancing interdisciplinary palliative care and supportive services for those diagnosed with head and neck cancer. The ONN role has gained national acceptance and is now widely implemented across cancer centers in America. Although in-depth research on oncology nurse navigation in head and neck cancer care is still emerging, clinical experience suggests the significant value of this role. However, its full impact on interdisciplinary palliative care and supportive services for these patients and their families is yet to be fully elucidated. Crucially, the ONN role provides a potential solution to bridge existing silos, facilitate early introduction of supportive and palliative care, and personalize head and neck cancer care. This personalization aims to improve patient experience, enhance clinical care coordination, and promote favorable healthcare utilization.
For over a decade, our model has evolved from a focus on cancer cachexia to encompassing comprehensive palliative and supportive care management for individuals living with and beyond a cancer diagnosis.
This paper aims to describe the innovative integration of the ONN role into our interdisciplinary palliative care and supportive services program to optimize access and utilization for individuals with head and neck cancer. We initially introduced our Cancer Appetite and Rehabilitation (CARE) Clinic nearly a decade ago. This clinic, a core component of our broader supportive and palliative care program, was designed to enhance nutrition and facilitate rehabilitation for patients at risk of cachexia, malnutrition, and deconditioning during and after cancer treatment. Drawing on over ten years of clinical experience with this interdisciplinary program that is integral to supportive and palliative care delivery at our center, we now share our efforts to address the specific needs of individuals with head and neck cancer and the clinical advancement achieved by incorporating an ONN into the interdisciplinary team.
Methods
This paper utilizes a clinical program description, supported by relevant clinical standards and current literature, to highlight the crucial role of the ONN in our model of interdisciplinary palliative care and supportive services for individuals with head and neck cancer. We will review the current CARE Clinic model, outlining the contributions of each participating discipline. Subsequently, we will detail the ONN role, emphasizing interactions with patients, families, and interdisciplinary team members, and highlighting key supportive and palliative care assessment and management strategies for individuals with head and neck cancer across the cancer care continuum. Finally, this paper will conclude with a summary of the practical implications and guidance for replicating the CARE Clinic Plus ONN Gate Opener model to enhance supportive and palliative care in other cancer care programs.
Findings
The CARE Clinic Model: An Interdisciplinary Approach
In 2007, the supportive and palliative care leadership team within our cancer program established the Cancer Appetite and Rehabilitation (CARE) Clinic, a pioneering multidisciplinary clinic focused on cancer cachexia. The CARE Clinic was among the first to proactively and comprehensively address cancer cachexia through an interdisciplinary team. Over the past decade, our model has expanded its scope from a primary focus on cancer cachexia to encompass a broader spectrum of palliative and supportive care management for individuals living with and beyond a cancer diagnosis. A subsequent study involved a gap analysis to evaluate and refine services specifically for individuals living with and beyond head and neck cancer. This analysis led to a redesign of the original clinic model. While retaining the CARE acronym, the redesigned program reflects an expanded focus, gap analysis outcomes, and the development of a team equipped to meet the evolving needs of patients and families. Consequently, the program is now known as the Cancer Rehabilitation (CARE) Clinic.
With its initial emphasis on comprehensive assessment and early intervention for cancer cachexia, our current multidisciplinary team is exceptionally well-suited to care for individuals with head and neck cancer. The team comprises clinical experts in nutrition, physical therapy, speech and language pathology, and advanced practice nursing who—along with nursing administrative leadership—provide patients and their family caregivers with tailored assessment, intervention, and education. This tailored approach addresses the specific needs commonly encountered by patients with head and neck cancer. Table 1 provides a detailed overview of each team member’s role in delivering interdisciplinary palliative care and supportive services to individuals living with and beyond head and neck cancer through the CARE Clinic Plus ONN Gate Opener model.
Table 1.
CARE Team Members and Core Role Elements in Care Provided to People Living with Head and Neck Cancer
| Team Member | Core Role Elements |
|---|---|
| Oncology Registered Dietitian | • Assess nutritional status and establish nutritional goals• Education on management of nutrition-related symptoms with emphasis on mucositis, dysphagia, and xerostomia• Based on speech and language pathologist recommendations, provides options for texture modifications and nutritional supplements• Evaluation of current treatment plan and risk of needing a feeding tube• Assist patient in decision-making if tube feeding is recommended |
| Physical Therapist | • Education on strategies to manage cancer-related fatigue and sleep hygiene, including the use of energy-conservation techniques• Individualized exercise program to address weakness, balance deficits, shoulder dysfunction, range of motion impairments, and endurance• Referrals for outpatient physical therapy for lymphedema or cancer-related fatigue• Work and lifestyle modifications• Durable medical and adaptive equipment recommendations |
| Speech and Language Pathologist | • Assessment and treatment of voice and resonance disorders; articulation and speech intelligibility, including needs for compensatory strategy training or alternative/augmentative communication• Assessment and treatment of swallowing, including clinical and instrumental assessment via modified barium swallow study or fiber-optic endoscopic evaluation of swallowing• Treatment may include diet modification, prophylactic or rehabilitative swallowing exercises, compensatory swallowing strategies and maneuvers, and postural changes• Assessment and treatment of cognitive communication disorders• Measurement of patient- and clinician-reported outcomes for communication and swallowing function• Referrals to other healthcare providers as needed |
| Palliative Care Nurse Practitioner | • Assessment and management of symptoms related to cancer and cancer treatment• Assessment and management of emotional coping• Assistance with medical decision-making• Anticipatory guidance regarding expected treatment-related symptoms• Caregiver support• Coordination with oncology specialists and other healthcare providers |
| Nursing Administrative Leadership | • Ensuring appropriate staffing, multidisciplinary participation, and space• Advocating for and securing funding• Advocating for supportive care disciplines• Identifying key partnerships within healthcare system• Facilitating opportunities for nursing education |
The Oncology Nurse Navigator: Opening Gates to Interdisciplinary Care
It is noteworthy that, due to the CARE Clinic’s historical development and the specific clinical needs of our cancer center’s patient population, a significant proportion of individuals treated in the clinic are those living with head and neck cancer. The inherent complexity of multimodal head and neck cancer treatment, involving numerous appointments with various providers and clinicians, often leads to feelings of overwhelm and confusion for patients and their families. The degree of complexity during treatment can exceed the tolerance threshold for some patients and their caregivers. Consequently, patients may miss scheduled appointments or treatment sessions. Critically, they may become so overwhelmed that they outright reject appointments for supportive and palliative care services, preventing them from exploring the potential benefits of these essential services. Therefore, despite robust scientific evidence and best practices validating the value of early interdisciplinary palliative care and supportive services, patients in our program—and in many others—may not fully utilize the CARE Clinic and other available supportive and palliative care resources. Contrary to the traditional healthcare concept of a gatekeeper who manages healthcare utilization, individuals with head and neck cancer in our care appear to require a “gate opener” to facilitate access to care and prevent complications.
Our cancer center provides ONN services to individuals diagnosed with a range of cancers, including head and neck cancer. The ONN role was integrated into our head and neck cancer team in 2016. A natural collaboration quickly emerged between the ONN and the CARE Clinic team following the introduction of the ONN role. This collaboration logically connects two parallel initiatives aimed at breaking down silos and enhancing communication to improve patient experience, streamline care processes, and achieve better quality outcomes. Simultaneously, the ONN team, serving all patient populations, completed a project to standardize initial patient assessments based on relevant oncology navigation standards. As a result, the ONN role as a gate opener for individuals with head and neck cancer needing early supportive and palliative care was developed to encompass:
- Comprehensive initial assessment at diagnosis or the first meeting.
- Early needs assessment and foundational education.
- Seamless coordination between cancer care providers and the CARE Clinic.
By engaging with individuals early in their treatment trajectory, often perioperatively, the ONN establishes an early and trusting relationship with patients and their family caregivers. The subsequent assessment, education, and referrals facilitated through this connection represent the “gates to care opened.”
ONNs prioritize personalizing the patient and family experience, preventing delays and misuse of supportive and palliative care to alleviate distress, improve self-care capabilities, and avert complications.
The concept of the ONN as a “gate opener” signifies the ONN’s role in enhancing the accessibility and usability of health and social care services through a therapeutic relationship, structured assessment, personalized education, and targeted referrals. This “gate opening” approach goes beyond the more conventional notion of gatekeeping or gate management to optimize healthcare utilization. The familiar gatekeeper model, often employed in primary healthcare optimization, is ill-suited to the complex structure, multifaceted processes, and critical timing inherent in cancer care. Conversely, in our model, the ONN metaphorically opens gates to care, encouraging individuals with head and neck cancer to actively utilize supportive and palliative care services tailored to their specific needs.
The ONN focuses on personalizing the patient and family experience, preventing delays and misuse of supportive and palliative care to reduce distress, enhance self-care, and avoid complications. Concurrently, the ONN becomes a communication director for patients and caregivers, fostering an ongoing, trusting, therapeutic relationship. Trust, personalization, education, and relationship building are instrumental in opening gates to healthcare. Simultaneously, the ONN aims to remove obstacles that might impede a patient’s ability to benefit from the full spectrum of cancer care and supportive and palliative care services available. Quality care for individuals with head and neck cancer necessitates that both cancer-specific and general healthcare services are readily accessible and easily navigable for effective utilization. Patients, who often experience discomfort, along with their supporting family members and friends, require dedicated support and guidance to access, navigate, and effectively use the healthcare they need.
The rise and success of the ONN role in cancer care underscores that achieving accessible treatment and other services requires dedicated, knowledgeable navigation to ensure safe, high-quality care. In our model, navigation extends beyond managing scheduling, insurance, transportation, and other logistical aspects of cancer care. Crucially, our CARE Clinic model and our overarching approach to supportive and palliative care emphasize the vital role of administrative staff in ensuring accessible and navigable care. Well-informed administrative staff who efficiently schedule clinical appointments and help resolve insurance and financial concerns are essential members of the interdisciplinary palliative care and supportive services team. Their actions significantly reduce frustration and distress for patients and their families when dealing with these administrative matters. The clear distinction between the responsibilities of administrative staff and the ONN ensures that the ONN, who typically holds a master’s degree, can operate at the peak of their professional capabilities and provide optimal care to patients and families.
Access to supportive and palliative care, including the CARE Clinic, often requires education, explanation, and encouragement. We screen patients, including those with head and neck cancer, using our standardized ONN intake assessment for frailty and nutritional compromise. A positive screening result for frailty, nutritional compromise, or both triggers a referral to the CARE Clinic for comprehensive assessment and intervention planning. Critically, the ONN opens the gate to supportive and palliative care by introducing the CARE Clinic and its team before cancer treatment begins or as soon as possible thereafter. The trusting ONN-patient-family relationship facilitates timely and clear communication throughout the treatment course. Consequently, the ONN is better positioned to intervene and provide appropriate education and referrals to the CARE Clinic and other services should patients experience escalating side effects or worsening disease symptoms. Collaboration between the ONN and the multidisciplinary supportive and palliative care team in the CARE Clinic relies on the application of evidence-based practices combined with relevant clinical guidelines to personalize care for each individual. Within the CARE Clinic, the team focuses on appetite, nutrition, and functional status, utilizing a set of established measures to assess individual outcomes.
Dietitian: Core Member of the Interdisciplinary Team
Nutritional care is paramount in supporting individuals with head and neck cancer and achieving optimal clinical outcomes. The oncology specialist registered dietitian (ORD) prioritizes early intervention, relying on timely referrals from the ONN for focused assessment. The ORD typically employs the Patient-Generated Subjective Global Assessment tool for nutrition assessment, a process for which the ONN effectively prepares patients. The ORD routinely collaborates closely with the ONN and the palliative care nurse practitioner (PCNP) to address educational and medication needs.
Physical Therapist: Enhancing Function and Quality of Life
The role of physical therapy in oncology rehabilitation is rapidly expanding, increasingly emphasizing prehabilitation to enhance both the patient experience and outcomes for individuals with head and neck cancer and other malignancies. The ONN and the physical therapist (PT) collaborate closely with patients and their family caregivers to ensure timely assessment and seamless access to home and ambulatory therapy, as well as the CARE Clinic itself. The PT typically conducts a baseline examination focusing on the cervical spine, shoulder, and posture. The ONN and PT frequently extend their partnership to monitor individuals at risk of developing lymphedema, a treatment sequela that can be particularly functionally debilitating for many. Additionally, the focus on assessment and intervention for cancer-related fatigue becomes a priority for the PT and the ONN as a patient’s treatment progresses.
Speech and Language Pathologist: Addressing Communication and Swallowing
The speech and language pathologist (SLP) is frequently recognized by patients and caregivers as a central figure in ensuring a positive head and neck cancer treatment experience. The SLP addresses speech, voice, and swallowing function at baseline for prehabilitation and later in treatment as functional changes arise and rehabilitation needs intensify. Assessment includes both clinical and instrumental evaluations to ensure a comprehensive understanding of individual function, needs, and preferences. Nevertheless, the ONN typically needs to open gates for SLP assessment and intervention, as patients and caregivers may initially be unfamiliar with these clinicians’ roles. The ONN and SLP frequently collaborate to ensure optimal care for individuals who may face barriers to adhering to recommended assessments and home exercises or other challenges. Critically, the ONN often works closely with the ORD and the SLP when patients require enteral feeding or experience symptoms such as odynophagia or trismus, again with the goal of ensuring fully comprehensive care.
The SLP is commonly among the disciplines best identified by patients and their caregivers as central to a successful experience of head and neck cancer treatment.
Palliative Care Nurse Practitioner: Expert Symptom Management and Goal Clarification
The PCNP applies core palliative care principles, supporting medical decision-making and coordinating complex interdisciplinary care for individuals with head and neck cancer. The ONN may arrange an initial consultation with the PCNP when a patient’s goals of care remain unclear following the initial assessment. With this referral to the PCNP, the two colleagues can collaborate closely, working directly with the patient and family to clarify goals and determine the most appropriate course of action. A joint decision to refer to the CARE Clinic, focusing on prehabilitation or rehabilitation as appropriate, rather than revisiting medical decision-making and reorienting the focus of care to be primarily palliative, typically results from this collaborative approach.
Administrative Leadership: Essential Support for Program Success
Nursing administration played a pivotal role in the development and implementation of the original CARE Clinic and the CARE Clinic Plus ONN Gate Opener model. This leadership encompasses advocating for and securing funding through institutional budgeting processes and philanthropic and scientific grant opportunities. Ensuring a sustainable and effective supportive and palliative care program is essential in an era where evidence supporting such care is accumulating more rapidly than institutional budgets may accommodate. Demonstrating the economic benefits of the model further necessitates a sophisticated quality evaluation strategy, including process mapping to avoid sequential processes and create parallel processes aligned with the “gate opening” concept. Improvements are not solely clinical; the most recent advancement in the CARE Clinic is the addition of a dedicated administrative staff member to support the multidisciplinary team, clinic organization, and increasing patient volume.
Case Study – Mr. Bearen: Illustrating the CARE Clinic in Action
A case study effectively demonstrates the operation and impact of the CARE Clinic. Mr. Bearen (a pseudonym) presented to our emergency department with a painful tongue lesion that had been bothering him for approximately four weeks. A biopsy confirmed squamous cell carcinoma of the oral tongue. CT scans of the face and neck revealed an irregular mass along the left side of the oral tongue, with no evidence of lymphadenopathy or distant metastasis. Discharge instructions directed Mr. Bearen to follow up with head and neck surgical oncology.
The CARE Clinic model appears to foster a sense of importance in patients, strongly aligning with national and international initiatives focused on addressing what matters most to patients.
The ONN met with Mr. Bearen in person one week later during his appointment with head and neck surgical oncology. The head and neck surgeon planned a composite resection, including total oral glossectomy and modified radical neck dissection with a left anterolateral thigh free flap. Mr. Bearen required a tracheostomy and percutaneous endoscopic gastrostomy tube placement at the time of resection. The plan included discharge to a subacute rehabilitation facility following his inpatient postoperative recovery, with routine home care follow-up. His treatment plan also incorporated concurrent chemotherapy and radiation after postoperative recovery. During their meeting, Mr. Bearen reported experiencing severe pain, rated as 10 out of 10, at the tongue lesion. He had been using Vicodin several times daily since his emergency department admission and reported difficulty swallowing and eating due to the pain. The ONN’s comprehensive assessment is detailed in Table 2.
Table 2.
Oncology Nurse Navigator Assessment
| Past Medical History | Seizures; chronic back pain; osteoporosis; chronic obstructive pulmonary disease; motor vehicle accident 4 years prior with right femur fracture; fall 2 years prior with humerus, shoulder, and elbow fractures. |
|---|---|
| Social History | 20 pack-year history of smoking cigarettes. History of alcohol use greater than 35 drinks per week for several decades. Currently drinking 6 standard alcoholic drinks per day with occasional binge drinking of up to 20 drinks in a day. Currently disabled, having worked as a union carpenter with exposure to asbestos. Has received Social Security disability for decades. |
| Medication Review | Manages medications independently and does not identify barriers. |
| Gender, Cultural, and Religious Identification | Self-identifies as a man. Does not identify any religious affiliation. |
| Language and Learning Preferences | Reads and writes English. His preference is for pictures and reading. He is motivated to learn about his disease. |
| Home/Functional Assessment | Lives with his wife in a 3-story home with a bathroom and bedroom on the first floor. Requires minimal assistance with activities of daily living, using a cane for walking and a shower chair. Does not self-identify as a caregiver. He has limitations in shopping and cooking his own meals. |
| Support System | Wife is a nurse working 2 part-time jobs and is patient’s primary caregiver. Three adult children and multiple siblings live nearby. No one residing with him has a history of drug misuse. |
| Nutrition | Five percent weight loss in 1 month and 14% weight loss in 6 months. Reduced oral intake due to pain and dysphagia. |
| Coping | States “Nothing I can really do. I just have to deal with it,” becoming tearful and expressing concern about leaving his wife alone. |
| Finances | Currently able to meet financial obligations. His wife expresses concern about loss of income due to missing work for appointments and transportation. |
| Insurance | Adequately insured. |
| Transportation | Does not drive. His wife is available most days to drive him but is concerned about missing work. |
| Frailty Screening | Negative for frailty by Flemish version Triage Risk Screening Tool.22 Reviewed summary of barriers to care, necessary initial education, and a plan for intervention with Mr Bearen. |
| Barriers | Physical disability from chronic back pain and history of syncope with seizures; fall risk; need for pain and symptom management; malnutrition; dysphagia; current tobacco use; current alcohol use; need for transportation assistance; need for emotional support; need for financial assistance. |
| Education | Smoking cessation, alcohol counseling, emotional support, and anticipatory guidance provided regarding expected treatment plan and transitions in care. |
| Intervention | CARE Clinic for nutrition, fall risk, dysphagia, and symptom management assessment.Transportation assistance provided through local charity organization. Refer to Social Services for emotional support and assessment and financial counseling. |
Mr. Bearen’s clinical situation and personal circumstances effectively illustrate how the ONN’s initial assessment facilitates early referral to the CARE Clinic. Without timely referral from the ONN, standard care processes could easily lead to a focus solely on surgical and postoperative care, neglecting crucial supportive and palliative care. A potential delay in comprehensive assessments by the ORD, PT, and PCNP could extend to weeks or even months under typical referral approaches for these services in healthcare systems nationwide. While SLP referral and assessment might occur at the surgical visit for preoperative evaluation, the delay in the coordinated interdisciplinary service bundle for combined assessment and planning represents a clinically significant gap in best practices. This gap increases the likelihood of missed opportunities to intervene in pre-diagnosis morbidities that significantly impact cancer care outcomes. The ONN effectively opens gates within both cancer care and the broader healthcare system, seizing every opportunity to support prehabilitation and early rehabilitation.
Implications for Practice: Adapting the Model for Broader Impact
The ONN “gate opener” role, integrated with the CARE Clinic model, provides a viable and innovative approach to enhance patient experience and improve clinical outcomes through integrated interdisciplinary palliative care and supportive services for individuals living with and beyond head and neck cancer. The ONN becomes the key team member who facilitates access to improved cancer care and healthcare for patients like Mr. Bearen through a systematic approach to program development, a clearly defined team structure, and established care processes, including comprehensive ONN assessment. From the clinicians’ perspectives, assessing individual needs, establishing a trusting therapeutic relationship, and working collaboratively with the interdisciplinary palliative care and supportive services team are essential for success. Patient and family feedback, gathered through quality improvement evaluations, suggests that the patient- and family-centered focus of this model is paramount. The CARE Clinic model appears to cultivate a sense of importance in patients, aligning strongly with national and international initiatives focused on addressing what matters most to patients.
Other cancer centers can greatly benefit from adapting our CARE Clinic Plus ONN Gate Opener model to meet their specific needs. Our experience in designing, developing, and sustaining this approach relies on strong nursing administration leadership and leverages an interdisciplinary model. The model itself is fundamentally person- and family-centered. Initiating with a thorough needs assessment to define requirements, identify barriers, and engage key stakeholders creates a robust foundation. Our experience highlights the fundamental importance of early discussions with colleagues in billing and electronic health records to ensure program sustainability, initially focusing on accurate documentation and billing for interdisciplinary team visits. Developing clear vision and mission statements supports consistent communication with patients and families and reinforces consistent messaging to colleagues and the broader institution. The interdisciplinary care model necessitates that team members function at the highest level of their licensed scope of practice. Therefore, team members make timely and appropriate referrals to other supportive services, advanced practice providers, and physicians as needed. For example, the SLP directly refers patients to gastroenterology, and the PT directly refers patients to occupational therapy or physiatry. This “top of license” function promotes parallel rather than serial clinical processes. Additionally, direct referrals from the ONN and care team foster collaboration with a broader network of specialists and primary care providers.
In conclusion, the CARE Clinic Plus ONN Gate Opener model offers a novel and effective strategy to integrate oncology nurse navigation with nurse-led interdisciplinary palliative care and supportive services. Our experience reflects high levels of patient and family satisfaction with the model and a decade of institutional success as we have evolved this model from its initial inception to its current form. We continuously track patient satisfaction scores and conduct focus groups to evaluate the various components of this model, including the ONN role and the CARE Clinic. While unpublished, these data consistently demonstrate high patient and family satisfaction and qualitative expressions of highly valued experiences. Future clinical research, coupled with ongoing quality improvement initiatives, is essential to further detail the effects of this model and to identify and define appropriate metrics necessary for further development and broader dissemination. We encourage colleagues interested in replicating our model to contact us via email (Sarah Kagan, [email protected]; Mary Pat Lynch, [email protected]).
Acknowledgment
The authors gratefully acknowledge the critical insights and valuable guidance provided by Robert C. Goodacre, MBA, in the conceptual model’s genesis and in developing foundational work for the project reported in this manuscript.
Financial Disclosures
This project received no funding.
Footnotes
The authors declare they have no conflicting or competing interests.
