Lung Cancer in the Palliative Care Setting: Successes, Challenges, and Opportunities for Collaboration

Introduction

The World Health Organization (WHO) defines Palliative Care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”

Palliative Medicine provides additional support for the relief of pain, nonpain symptoms, and stress associated with serious illness. These services can be delivered by primary care physicians or oncologists (Primary Palliative Care) or by specialized Palliative Medicine teams. Specialty Palliative Care teams are comprised of palliative care–certified physicians, nurses, social workers, chaplains, and individuals from other disciplines who work together with a patient's primary team in an integrated fashion to deliver comprehensive care.

Palliative Medicine clinicians specialize in pain management (cancer-related pain) and nonpain symptom management (i.e., management of chemotherapy-induced peripheral neuropathy, nausea, vomiting, diarrhea, appetite disturbances, constipation, fatigue, insomnia, and mood disorders). The Palliative Medicine team also provides psychosocial and spiritual support to patients, families, and caregivers. The team collaborates with social workers and chaplains to provide counseling, education, respite, and bereavement care.

Palliative Medicine specialists also elicit patients' illness understanding and prognostic awareness. Patients' end-of-life preferences are carefully elicited and documented in the electronic medical record through the process of Advance Care Planning. Near the end-of-life, Palliative Care teams facilitate and support patients' and their families' decision to enroll in hospice care, and can ease the transition from receiving aggressive treatment to focusing solely on comfort.

These specialists also work hand-in-hand with the other specialties—medical oncology, radiation oncology, surgical oncology, physical medicine, and rehabilitation—not only to understand the patient's illness, goals, and overall prognosis; but to provide optimal symptom control and relief of suffering.

Palliative Care delivered early on in the course of a serious illness (ex. cancer) can improve patients' symptoms, satisfaction with care, and quality of life (QOL). Other benefits of early palliative care (EPC) interventions include increased patient and family level of understanding of what to expect as disease progresses and death approaches; relief of pain and other symptoms; increased family and caregiver support; decreased crises and health care utilization (i.e., 911 calls, emergency department visits, and hospitalizations); improved QOL; and sometimes survival (possibly due to decreased toxicity from tumor directed therapies).

Palliative care is often categorized as synonymous to hospice, and although the field of Palliative Care did evolve from the modern hospice movement, there are distinguishing factors among the two. While hospice is a “palliative care only” approach, palliative care begins at the time of diagnosis of a serious illness and can be delivered alongside curative or life prolonging therapies. In order to receive hospice in the United States, a patient must have a certified prognosis of less than 6 months if the illness runs its natural course. In addition, once enrolled in hospice, a patient agrees to forfeit insurance coverage for their “hospice-qualifying diagnosis.” Finally, while receiving hospice care, a patient must forego “curative” or life prolonging therapies, whereas palliative care services are appropriately delivered concurrently with all appropriate disease modifying treatments (ex. chemotherapy). Most importantly, palliative care is provided based on patient and family needs (independent of prognosis). It is also appropriate at any stage of serious illness from disease onset to bereavement for families.

Both palliative care and hospice care are underutilized in the United States. According to the Center to Advance Palliative Care, as of 2017, only 48% of Medicare deaths are preceded by hospice care. Among enrollees, 54% receive hospice care for less than 30 days, and 28% receive hospice care for a week or less.

Palliative care has become an integral part of the care of cancer patients. In the case of lung cancer patients, it is now recognized that integrative models of palliative care and oncology care in the management of advanced lung cancer patients can improve QOL and even survival when incorporated early on in the disease trajectory.

There are many palliative care needs in the advanced lung cancer population. Common symptoms reported by these patients include pain, dyspnea, cough, fatigue, depression, and anxiety. Patients with lung cancer have also been found to have higher levels of psychological distress compared with other cancers. In turn, higher levels of emotional and psychological distress are associated with increased symptom burden. The goals of palliative care are to improve QOL, which is diminished by both disease related factors and toxicities from disease modifying therapies. Palliative care interventions aim to improve QOL by ensuring the provision of impeccable symptom management and psychosocial support.

Lung Cancer Epidemiology

In 2018, lung cancer occurred in approximately 2.1 million patients worldwide and caused an estimated 1.8 million deaths worldwide. It remains the leading cause of cancer-related death in adults. In the United States, lung cancer occurs in about 234,000 patients and causes over 154,000 deaths annually. In the United States and other industrialized nations, it is primarily caused by exposure to tobacco products (ex. cigarette smoke). In other parts of the word, air pollution and cigarette smoke are likely the causative agents.

In the United States, nonsmall cell lung cancer (NSCLC) accounts for the majority (85%) of the cases, with the remainder as mostly small cell lung cancer (SCLC). For the majority of patients, the diagnosis is made late at stages (III and IV at presentation), where survival is poor, with an overall 5 year survival of 9.5%–16%.

Treatment and long-term outcomes of lung cancer depend on the extent of disease at presentation, a patient's overall health status, as well as a patient's performance status. Most cases remain incurable. Treatment modalities include surgery, chemotherapy, radiation therapy, as well as targeted therapy and immunotherapy. Palliative care can be provided to patients with serious illness and their caregivers, regardless of the intent of their treatments: supportive/palliative (aimed at improving QOL only) or with curative intent. For these reasons, the role of Palliative Care in the management of these patients has gained importance in recent years.

Integrated Interdisciplinary Palliative Care Alongside Standard Oncologic Care in the Management of Nonsmall Cell Lung Cancer Patients

Palliative care supports the best possible QOL for patients with serious and complex illnesses (such as lung cancer) by optimizing assessment and screening early on and incorporating symptom management strategies when most needed.

Given the threats to QOL presented by this illness, the effects of Palliative Care delivery in the lung cancer population have been the focus of significant research efforts. It is well established that early integration of Palliative Care in standard oncologic care improves QOL, depression, anxiety, and satisfaction with care. There are several studies supporting the role of Palliative Care in the medical management of lung cancer patients.

The ENABLE trial utilized four weekly educational sessions in Palliative Care, followed by monthly telephone follow ups, demonstrating an improvement in QOL for patients with advanced cancer. In the ENABLE II trial, patients with advanced cancer received early subspecialty Palliative Care consultations along with monthly follow-up interventions. This study also showed improvement in overall survival, and improvement in caregiver depression scores and stress burden. A landmark study by Temel et al. randomized 151 patients with advanced NSCLC to receive early Palliative Care (EPC) plus standard oncology care or standard oncology care (SOC) alone. EPC was associated with improved QOL, fewer depressive symptoms, less aggressive end-of-life care, and longer lengths of stay on hospice compared to standard oncology care alone. In addition, median overall survival in the EPC group was 11.6 months compared to 8.9 months in the standard oncology care arm ( P = .02). A trial led by Bakitas et al. of 322 pts, including 117 advanced lung cancer patients, randomized to usual oncologic care or usual care plus an advanced practice nurse led palliative care intervention showed improvement in QOL and mood. Zimmerman et al. led a randomized control trial of newly diagnosed advanced cancer patients with an estimated prognosis of 6–24 months at a single tertiary center. The study evaluated consultation with follow up with Palliative Care team versus standard of care, found improved QOL at the end-of-life, and improved satisfaction with care. In a retrospective analysis of a large cohort of patients diagnosed with advanced lung cancer, an improved survival was noted if a Palliative Care visit occurred between 31 and 365 days after diagnosis. The study also showed reduced likelihood of death in an acute care setting.

The American Society of Clinical Oncology (ASCO) recommends that patients (and their caregivers) receiving treatment for advanced lung cancer receive palliative care services within 8 weeks of diagnosis. However, referral patterns will likely depend on the availability of these services, given a shortage in the Palliative Care workforce. It is not unreasonable to refer lung cancer patients to Palliative Care when needs arise (ex. patient is experiencing pain and/or other debilitating symptoms). For patients with minimal symptoms and access to tumor-directed therapies, a Palliative Care referral can be reserved until worsening of symptoms or disease progression. Additional criteria guiding Palliative Care referrals include a life expectancy of less than 1 year and poor performance status (ECOG score of 3 or higher).

Several conceptual models for the integration and delivery of Palliative Care exist. They have been conceptualized by Hui et al. as follows :

• 1.

  The onco-centric or solo practice model—oncologists manage all patient symptoms and provide oncologic care

• 2.

  The congress model—oncologists refer patients to specialists who focus on symptom control

• 3.

  The integrated care model—oncologists make early referrals to specialty Palliative Care, and supportive care is provided by both the oncology and the palliative care teams in tandem.

The integrated model likely offers more support to oncology providers (and patients alike), as well as more comprehensive care to each patient than the congress model, which relies upon multiple subspecialty consultations.

Despite the benefits of the integrated Palliative Care model, opinions guided by personal biases and misconceptions regarding the role of Palliative Care (from both providers' and patients' perspectives) have led to delay of Palliative Care referrals to the advanced lung cancer population. In addition, the challenges of a limited Palliative Care task force have diminished the access to Palliative Care services for every patient who has advanced cancer. A potential solution to this problem may lie in introducing the concept of Primary Palliative Care in efforts to deliver comprehensive care to this patient population.

One strategy to enhance the delivery of Primary Palliative Care includes incorporating dedicated education on Palliative Care within oncology training. Because increasing the Palliative Care task force can take decades of investment from governments and health care systems, coming up with new and innovative ways of improving Primary Palliative Care and its intersection with Specialty Palliative Care will also become essential. Distress screening and patient-reported outcomes (PROs) can potentially bridge the gap of integrating oncologic care and palliative care.

Distress screening, which has been mandated by the National Comprehensive Cancer Network (NCCN) since 1997, can provide an opportunity to bridge the gap between oncologic care and palliative care. Distress is defined by the NCCN as “a multifactorial unpleasant experience of psychological (i.e., cognitive, behavioral, and emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.”

Patient-reported outcomes (PROs) have become an important outcome of interest in clinical practice. PROs provide information on the physical and mental health of a patient from a patient's perspective, as opposed to a clinician's report. “Basch et al. found that integrating PROs into the routine care of patients with advanced cancer led to a statistically significant improvement in overall survival in a single tertiary care center.” Patients randomized to PRO intervention had longer overall survival and were also able to tolerate continuation of chemotherapy for longer periods of time, compared to control patients. The study outcomes suggested that the use of PROs may have allowed providers to identify and manage treatment-related adverse effects more effectively and timely.

Systematic reviews have also shown that PROs help improve patient and provider communication, and increase patient satisfaction. Another trial with Stage IIA–IV lung cancer patients receiving web-based monitoring of PROs reported significantly increased overall survival. PROs can also potentially guide the appropriate timing of referrals to Palliative Care as they are used to monitor symptom burden. Given that currently recognized unmet needs in the advanced lung cancer population have not been fully addressed by present models of integrating palliative care and oncologic care, it is possible that PROs may provide an opportunity to integrate these two specialties, thereby improving cancer care and symptom management in this population.

Assessment of Patients—The Palliative Care Approach

A comprehensive assessment using a multidimensional approach is essential to the management of cancer patients with advanced lung cancer. Uncontrolled symptoms, including pain, fatigue, and dyspnea among others, often result in worsening well-being, psychological symptoms, and ultimately worsening QOL for patients and their families. Symptom assessment tools are widely available in the field of Palliative Care to ensure timely screening and diagnosis of symptoms, resulting in their timely management. The palliative care domains important to assess are physical symptoms, performance status; psychological/psychiatric symptoms; and social and economic needs of the patient, family, caregiver; religious, spiritual, and existential issues.

Validated tools such as the NCCN Distress Thermometer are effective in screening for untreated distress in the physical, social, or psychological domains. Patients can rate distress from 0 to 10 and designate particular areas of concern which may merit a palliative care consultation.

The Edmonton Symptom Assessment Scale (ESAS) and the Memorial Symptom Assessment Scale (MSAS) are reliable, validated tools used to assess physical symptoms in the clinical setting. The ESAS assesses 10 common symptoms (pain, fatigue, nausea, depression, anxiety, drowsiness, shortness of breath, appetite, feeling of well-being, and other symptoms) over the past 24 hrs. Symptom assessment by means of these tools can be administered at subsequent clinic visits, can guide treatment decisions, and assess QOL. Performance status tools used in Palliative Care include the Eastern Cooperative Oncology Group (ECOG) and the Palliative Performance Scale (PPS), among others. The ECOG Performance Status has been validated in patients with cancer and correlate with survival. For example, an ECOG score of greater than three is associated with survival of 3 months or less.

Tools to assess psychological, psychiatric, and cognitive domains include ESAS (Edmonton Symptom Assessment Scale), MDAS (Memorial Delirium Assessment Scale), and the PHQ-9 (Patient Health Questionnaire). The FICA (faith, importance, community, action) is a validated tool to assess the spiritual domain. The CAGE Alcohol Questionnaire (Cut, Annoyed, Guilty, and Eye) is used regularly in the assessment of chemical coping.

Role of Telemedicine in Palliative Care

Telemedicine provides a virtual means to support face-to-face clinical care and can include video conferencing or digital information (imaging, reports, and other resources) that can be accessed on demand. Telemedicine can also include patient education and self-care resources. Studies have shown improved patient and health care provider satisfaction with telemedicine. Several factors have contributed to the increase in telemedicine usage for health care delivery including a predicted shortage of oncologic providers, an aging population, and the absence of available services in rural areas. Telemedicine has other benefits too, including increased cost savings and the opportunity for interprofessional collaboration. Since health care providers do not have to travel to clinics or patient homes, there is more clinical time available for an increased number of encounters.

Telemedicine has played an essential role in the delivery of health care services to oncology patients particularly when there is limited availability of medical care. Patients with serious medical conditions are frequently faced with the decision to choose costly emergency medical services when their condition worsens. Many outpatient clinics are also not able to accommodate patients after hours. Poor physical health and limited social support present additional obstacles to obtaining health care resources. Calton et al. 2020 conducted a telephone-based survey among a small number of palliative care patients from a quaternary urban medical center receiving telemedicine visits, half of whom were cancer patients, and their caregivers. The results of the survey were very positive, with nearly all patients reporting that they would have another telemedicine visit if it was offered to them. The patients reported ease of use of the telemedicine services as 97% and 100% of caregivers “felt comfortable discussing sensitive topics by telemedicine.”

Studies have demonstrated that telemedicine communication provides an equivalent level of care to in-person medical services in specialties other than Palliative Care. Telephone-based interventions have been successful at improving QOL and lowering depression symptoms in newly diagnosed lung cancer patients. The benefits also extend to the patients' family members as telemedicine appointments allow increased opportunities for engagement while reducing travel time to appointments. One study by Chua et al. 2019 is currently investigating the effectiveness of telemedicine to improve QOL outcomes, end-of-life preferences, and length of stay in hospice. The intervention will include a telehealth-based early Palliative Care (EPC) intervention study arm and an in-person intervention study arm in 20 major cancer centers throughout the United States. The hope is to determine the applicability of using telemedicine for advanced Palliative Care patients and enhancing the ability to reach communities with limited care access. Another multicenter trial which aims to study the effectiveness of early integrated telehealth Palliative Care compared to in-person Palliative Care in a cohort of patients with advanced NSCLC is currently ongoing. This study will examine various aspects of palliative care including improvement of QOL and mood symptoms, communication about end-of-life care preferences, and patient/caregiver satisfaction with telehealth. These patients will be followed at 3-month time increments after being randomized to either the monthly in-person palliative care visits or telehealth monthly visits.

Current events have also necessitated the use of telemedicine to augment the direct communication which is essential to Palliative Care services. The COVID-19 pandemic has made in-person communication difficult due to restrictions surrounding in-person visitation. Palliative care has changed drastically to accommodate for the intimate nature of end-of-life care. Telemedicine has allowed patients to virtually address psychosocial issues, symptom management, goals of care, and bereavement to isolated patients and their family members. One interdisciplinary team at the VA Affairs healthcare system in Washington state developed a workgroup to implement quality improvement changes in a business model format with the intention of delivering health care services without minimizing human contact. They developed a formal operating procedure to teach communication strategies, technology modalities, and end-of-life care to stakeholders throughout the health care system.

Many studies are ongoing in the field of telemedicine including randomized controlled trials and pilot programs that are expanding access to care in rural areas. More data will aid health care providers on the effectiveness of telemedicine and Palliative Care delivery, as the need for this service continues to grow. This research will also benefit the lung cancer population.

Physical Symptom Management