Abstract
Abstract
Background:
Integration of palliative care (PC) in oncology have been found to improve symptom distress, quality of life, and survival in patients with advanced cancer. Early integration is most appropriate in the outpatient setting. However, most PC services in the United States do not have an outpatient component. Our study aims to provide a snapshot of the type of patients and families who are referred to this novel setting for the delivery of early PC.
Conclusion:
Traditionally, PC has been delivered predominantly to patients with advanced disease and to aid in transition to end of life. In recent years, outpatient centers have dramatically changed the nature of PC work as in our snapshot, which shows that in addition to patients regarded as more traditional patients, such as those transitioning to end of life, there are now patients who come in very soon after arrival to a cancer center requiring specialized care to address a variety of symptom and educational needs, thus requiring adaptation of structure and processes to allow access for frequent follow-ups, counseling, and flexibility for walk-in visits. Our findings suggest that Supportive Care Clinic needs to practice in a very different way, which requires certain skills and assessment tools that are not conventionally present in traditional oncology clinic settings. More research is needed to identify the type of patients who would benefit most from a PC referral.
Introduction
P
Integration is best achieved in the ambulatory setting where patients with localized and curative disease as well as those with advanced disease can benefit from PC services. In a report that surveyed cancer centers in the United States, only 59% of National Cancer Institute (NCI) cancer centers, and 22% on non-NCI cancer centers have a dedicated outpatient PC clinic. 3 Ambulatory care models for successful PC integration are integral if we are to deliver such care to patients and their families.
Early referral to outpatient PC requires close partnership with primary oncologic teams, easy and rapid access to the PC team for management of symptoms, and a capable well-trained staff of physicians, registered nurses (RNs), counselors, and pharmacists.4–6 Recognition of benefits to early PC referral is crucial in delivering comprehensive cancer care. Prompt facilitation of PC consults and our clinic policy of accommodating patients who walk in for uncontrolled symptoms enable our team to timely address issues as they arise. Routine assessments that are conducted by the nurses assist in managing complex medical and psychosocial issues. The presence of a designated telephone nurse, pharmacist, counselors, and medical assistance ensure that all other aspects of care for patients and their families are being attended to.
The traditional patient population previously seen in PC is slowly changing. Our outpatient PC clinic sees patients at different trajectories of their disease as well as those with variable prognosis. Each scheduled patient is first assessed by the nurse using various assessment tools such as the ESAS, CAGE-AID, and the MDAS. Physicians receive information from the nurses and proceed with the patient visit. If other needs such as psychosocial counseling, medication education, and advance directive discussion are identified, our counselors, pharmacists, and social workers are asked to provide care to the patient and/or family. In some cases, where there is concern for substance abuse and inappropriate opioid use, a CHAT (compassionate high alert team) composed of a physician, nurse, patient advocate, and pharmacist with the goal of maximizing patient safety and minimizing the risks of aberrant opioid use will see the patient. For those nursing visits only, it should be emphasized that the nurses always communicate with the physicians in clinic for final decisions on care. The purpose of this case series is to illustrate the heterogeneity and complexity of patients, and the specialized skills that is required to address their array of medical and psychosocial conditions by presenting cases during a single day in an outpatient PC clinic in a major U.S. cancer center. In this snapshot, we focused on a single day in the outpatient center (February 2016). Forty-one patients were seen that day in the Supportive Care Clinic: 10 scheduled consults, 22 scheduled follow-ups, and 9 (22%) same-day unscheduled patients: 4 follow-ups, 1 consult, and 4 nurse triages. There were also 31 telephone encounters. Most patients seen were for routine follow-up and assessment of symptoms. However, 10 presented with worsening symptoms with one needing hospital admission. Twenty-one patients required additional counseling: 2 for hospice transitioning, 12 for psychosocial distress, and 7 for opioid education. This day demonstrates a typical clinic day where patients come with diverse needs and medical acuity. PC was delivered predominantly by physicians and nurses, with collaboration with our pharmacist, counselors, and case manager.
Cases
Patient 1 presented with her spouse to the center for her scheduled outpatient follow-up visit. The patient's initial consultation was one month prior. She was a retired electrical engineer in her 70s with metastatic non-small cell carcinoma of the lung. Patient's disease progressed despite completion of radiation therapy to the brain and bone. The patient was noted to have delirium, persistent fatigue, and uncontrolled pain. The PC nurse performed a thorough assessment, provided essential education, and counseling on issues such opioid neurotoxicity as well as delirium. The patient was subsequently transferred to the EC and admitted for further workup. The patient was eventually transferred to the inpatient PC unit and discharged home with hospice.
Patient 2 presented to the center with her sister, son, and daughter-in-law for her scheduled outpatient follow-up visit. She was a homemaker in her 70s, originally from Mexico, with advanced recurrent endometrial cancer.
The patient was well established in the center, and her original consult date was December 17, 2014. She reported progressive worsening of her fatigue, pain, and emotional/distress relating to her worsening functional status. A discussion initiated by the clinic nurse about goals of care, coordinating a hospice education home visit as well as options for her care at the end of life (EOL), was done. The patient and her family were open to the hospice education provided by our PC nurse.
Patient 3 presented to the center with her spouse for her scheduled outpatient follow-up visit. She was a substitute teacher in her 50s diagnosed with chronic myelogenous leukemia (CML). The patient was well established in the center, her original consult date was nine years before this visit. During the visit, there was a concern about safe opioid use and evidence of illicit drug use, necessitating a CHAT intervention composed of a nurse, physician, and pharmacist with emphasis on the establishment of trust surrounding safe opioid use as well as education to prevent dangerous opioid complications linked to unsafe opioid practices. Patients require more close monitoring and close follow-up to ensure safety and compliance.
Patient 4 presented to the center with her spouse and sister for her walk-in outpatient consultation visit as per the request of the breast medical oncologist for uncontrolled pain, opioid neurotoxicity, and fatigue. She was a retired school bus driver in her 60s diagnosed with metastatic inflammatory breast carcinoma. Patient was new to the institution for a second opinion. The patient was experiencing high levels of pain as well as neurotoxicity related to polypharmacy. The PC nurse provided medication education and assessed the neurotoxicity. Following the physician's assessment, the PC nurse provided opioid education and coordinated a follow-up phone call in the next week.
Patient 5 presented to the center with her spouse for her nurse-driven walk-in outpatient follow-up visit due to increased symptom burden. She was a homemaker in her 60s diagnosed with metastatic hurthle cell carcinoma. Although the patient was well established in the center, her original consult date was 10 months before the visit. The patient walked in to address increasing pain, anorexia with nausea, and vomiting. These symptoms were addressed and patient was able to discharge to home.
Patient 6 presented to the center with her spouse for her scheduled outpatient consultation visit. She was an education administrator in her 50s diagnosed with high-grade serous carcinoma of the ovary. She had completed her treatment and was on active surveillance. She was referred to our clinic for recommendations regarding chronic opioids prescribed by a local pain specialist. Opioid education was provided during this visit with particular attention given to careful dose titration as patient was keen on being off of opioids as soon as possible. Patient would be following up with her local care provider.
Patient 7 presented to the center for his scheduled outpatient follow-up visit following a hospital admission for a T8 vertebral compression fracture. He was a catering company worker in his 60s diagnosed with metastatic non-small cell lung cancer. He was receiving treatment with palliative intent. The patient verbalized his distress related to dying and extensive discussions about expectations at the end of life were done.
Patient 8 presented to the center for his scheduled outpatient follow-up visit. He was a 60-year-old gentleman with a diagnosis of squamous cell carcinoma of the larynx who was given the bad news of disease progression after completion of concurrent chemoradiation. Patient had significant emotional distress with high pain symptom expression, particularly pain. Expressive supportive counseling was done during this visit with the involvement of our counselors. Patient had a significant fear of opioids that caused distress and uncontrolled pain. Extensive education on safe opioid use and addiction was done.
Patient 9 was a nurse-driven walk-in follow-up after he presented with pain. The patient is an active military personal in his 20s and was accompanied by his wife and son. The patient had a history of frequently missed appointments. The patient had a diagnosis of metastatic neuroendocrine carcinoma. What was striking was that the patient rated emotional distress low on the ESAS scale, with only pain and other symptoms being uncontrolled. Nurse training on symptom assessment enabled identification of patient and family distress resulting in appropriate and timely intervention. Counseling and titration of medications were done to optimize patient's symptoms.
Nurse visits
There were four patients who were evaluated by the clinic nurse when they presented to the clinic without a scheduled appointment.
Patient 1 is a female in her 80s with recurrent left oral cavity squamous cell carcinoma who presented with her son. The patient came to the center for a nonopioid medication refill, but had several concerns regarding all her medications. The nurse reviewed the medications with the patient and son going through the indications, interactions, and side effects of all her medication.
Patient 2 is a male in his 70s with metastatic prostate cancer who presented alone with concerns about decreasing appetite and constipation from his medications. The nurse initiated discussions on cachexia and anorexia as well as constipation. Counseling regarding the underlying distress caused by cachexia was also initiated to be followed up on the next visit.
Patient 3 is a male in his 60s with recurrent prostate cancer who came to clinic for an opioid medication refill. Nurses routinely assess for pain, opioid toxicity, bowel movements, and other patient concerns. Working with the physician in clinic, medication adjustment and education were done.
Patient 4 is a male in his late 70s with recurrent sigmoid colon cancer who was concerned with declining performance status. Besides ordering physical therapy evaluation and rehabilitation services coordination, counseling regarding cancer-related fatigue and other coping strategies were discussed with the patient and his wife.
Discussion
This case series reports only a single day to illustrate how PC clinic is able to address a variety of symptoms and patient needs. Patients seen in the PC clinic are at various points in their disease trajectory and present with a multitude of issues with varying complexities. Medical providers need to be prepared to address simple routine concerns such as medication refills and education, to more complex issues such as uncontrolled symptoms, psychosocial distress, and acute medical deterioration requiring hospital admission. The cases showcase why outpatient PC needs to practice in different ways with an emphasis on symptom management, nutrition, assistance with treatment-related decision-making and screening and management of complex psychosocial issues.
The success of the PC clinic requires close collaboration with the primary oncologic team. The focus on symptom management as well as other psychosocial distress that may otherwise affect patient oncologic treatment is within the sphere of PC expertise.7–9 With the attention placed on these concerns, the primary oncologic team can be accorded more time to concentrate on other treatment considerations related to the cancer.
Incorporating PC has been shown to improve symptoms, reduce psychosocial distress, and enhance quality of life. Research on the best outpatient PC models range from the embedded model to the home/community-based model.10–12 The PC model that we presented involves close coordination with the primary team with regard to treatment goals without being physically embedded in the primary oncology clinic. Flexibility in clinic appointment schedules, accommodation for same day consults, and walk-in visits promote the same continuity and coordination of care reported in embedded PC clinics. This model offers the advantage of a more robust interdisciplinary team (IDT) presence in clinic and more resources available for PC-focused assessments and management, all while ensuring access to care for patients.
Early integration of PC requires more resources to be available for patients. As illustrated in our cases, access to an IDT benefit patients and families. Involvement of an IDT allows for interventions in multiple fronts and promotes the delivery of a consistent message in a single setting. An IDT approach to care has been shown to effectively improve symptoms, communication, and overall satisfaction of medical care. However, having a full IDT in clinic poses financial and logistical challenge for many. Traditionally, the various elements of the IDT come from distinct groups in the hospital. In our PC clinic model, the IDT is under one department, which helps streamline care and avoid unnecessary redundancy.
The PC clinic offers benefits that an inpatient-only model cannot provide. The acuity of patient's condition is less in the outpatient setting affording the medical provider, patient's and family more time dedicated to education, counseling, discussion of treatment decisions and resources, and transitioning of care. Emergency room visits may also be bypassed by a visit to PC clinic in patients who develop acute symptoms, but are otherwise in stable condition. In our own PC clinic, nurses are trained in PC partner with PC physicians to deliver impeccable medical care. Patients and their families have access to our IDT composed of psychologist, counselors, chaplains, pharmacists, dietician, and social worker.
As PC becomes more integrated with oncologic care, the traditional PC patient is now more multifaceted. Advance care planning, discussion about end-of-life goals, and focusing on transitioning to hospice care are still very much a part of the medical providers role. However, other patient issues are also beginning to emerge that require medical providers to continue to adapt and learn new skills in patient care. PC patients are not immune to issues with aberrant drug behavior and chemical coping. These new challenges highlight the importance of having an intensive, well-developed, ongoing PC training model established in clinic to ensure comfort with performing the patient centered care.
The consequences of the changing landscape of cancer treatment are that patients present with a variety of complex medical and psychosocial needs that need to be addressed. Referral to an outpatient PC clinic enhances quality of life, helps manage uncontrolled symptoms, reduce psychosocial and spiritual distress related to cancer treatment and progression, ease the transition to end-of-life care, and reduce the use of more aggressive treatment at the end of life. This series is useful for healthcare groups looking to set up an outpatient PC program as it illustrates the skills that are required for every member of the team as well as the resources that need to be available to delivery outstanding patient care.
Footnotes
Author Disclosure Statement
No competing financial interests exist.