Palliative care has undergone a dramatic evolution since its inception in the 1960s, from primarily community-based care focused on patients approaching death toward a vision for palliative care integration concurrent with conventional disease-modifying therapies throughout the course of illness and across medical treatment settings (17, 18) (Figure 3). The benefits of secondary palliative care are unequivocal (19–22) and can be extrapolated to patients with serious respiratory illness. Today, the major delivery models of specialist palliative care include inpatient consultation teams, acute palliative care units, and ambulatory, home, or community-based outpatient services. Hybrid models also include integrated, interprofessional clinics where palliative care specialists are embedded within a pulmonary clinic (18, 23, 24). These hybrid models are often disease-focused (e.g., lung cancer) (24) or symptom-focused (e.g., breathlessness) (18, 25). Models also differ in their team structures, care processes, components, patient populations, and reimbursement. Financial incentives can influence delivery models, such as the recently introduced Centers for Medicare and Medicaid Services reimbursement codes for advance care planning (ACP) (26) and the Medicare Care Choices Model demonstration allowing concurrent curative and hospice care (27). Unfortunately, access to palliative care is limited (4, 5), particularly in outpatient settings, and the looming specialist palliative care workforce shortage will exacerbate the unmet palliative care needs of patients (3, 28). As a result, there is an increased emphasis on the holistic model referred to as primary palliative care, or the delivery of palliative care by all clinicians who care for patients with serious respiratory illness and their families (9, 10).

Figure 3. Primary and secondary palliative care integration in serious respiratory illness. This figure has three panels. In the top panel, the x-axis denotes patient wellbeing and function, and the y-axis denotes time. The top panel illustrates the hypothetical integration of palliative care across illness trajectories of lung cancer (red dashed line), pulmonary hypertension (blue line), and chronic obstructive pulmonary disease/interstitial lung disease (COPD/ILD; gold line), each punctuated by declines in wellbeing at hospitalizations (stars) and potential lung transplant referral (diamonds). The integration of primary palliative care (orange circles) starts early (see Figure 4 for triggers), and the integration of secondary palliative care (blue circles) is added later, but well before the end of life. In the middle panel, the x-axis denotes palliative care intensity, and the y-axis denotes time. Primary palliative care increases in intensity after initiation (expanding orange triangle) as serious respiratory illness worsens, and secondary palliative care starts later and also increases in intensity but layers on top of secondary palliative care (expanding blue triangle). Through ongoing comanagement, a period of collaborative primary and secondary palliative care (overlapping triangles) should occur as illness severity worsens through the end of life. The bottom panel illustrates how palliative care may evolve across a continuum of serious respiratory illness. When illness is less severe, palliative care occurs concurrent with illness-directed therapies and then shifts focus from cure to end-of-life care (e.g., hospice and bereavement support) near and after death. This figure is adapted by permission from Iyer, AF. The Role of Palliative Care in COPD. Chest 2022;161: 1250–1262.

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In addition to potentially improving access, primary palliative care has several other potential benefits as it can leverage longitudinal therapeutic patient–clinician relationships and trust, use a continuum of care approach gradually integrating palliative with usual medical care over time, and normalize early components of ACP such as identifying surrogate medical decision-makers (29–32). Therefore, all pulmonary–critical care clinicians should screen patients for symptoms and palliative care needs and know how to integrate core aspects of palliative care within usual care for patients with serious respiratory illness (11). Inherent in this model are established best practices facilitated by comprehensive palliative care education and requisite training that includes, but is not limited to, serious illness communication and comprehensive symptom assessment and management (33–35). Clinician competencies should be commensurate with the degree of specialization and relevant to the populations served (e.g., patients with COPD or ILD). To date, the benefits of a primary palliative care model for those with serious respiratory illness have not been well studied, with limited evaluation of nurse practitioners in oncology clinics (36, 37). Other key unanswered questions regarding primary palliative care models include the following: 1) discerning strategies for early identification of patients who may benefit from palliative care; 2) identifying potential referral triggers for secondary palliative care when needs exceed that of a frontline pulmonary–critical care clinician (Figure 4); and 3) developing the most effective ways to teach pulmonary–critical care clinicians and trainees (e.g., fellows and respiratory therapy students) through continuing palliative care education, comanagement delivery models (particularly for more complex needs), and health system-level policies to support implementation. Sources for palliative care education, training, and other resources are included in Table 3.

Figure 4. Triggers for initiating primary and secondary palliative care in serious respiratory illness: the levers model. Hypothetical triggers for primary and secondary palliative care occur across multiple domains: lung function, symptoms, care needs, exacerbations, advanced therapies, and caregivers. The x-axis denotes worsening illness severity, whereas the y-axis denotes multiple domains, each with a circle functioning as a lever that can move up or down, crossing a threshold for primary or secondary palliative care, illustrated by the dashed lines. Any one or multiple domains can cross a trigger threshold for consideration for primary or secondary palliative care initiation. For example, a person can trigger consideration for primary palliative care when their FEV₁ drops below 50% predicted (lung function domain). Also, a person can trigger consideration for secondary palliative care when their breathlessness becomes severe on the Modified Medical Research Council (mMRC) (symptoms domain). 6MWD = 6-minute-walk distance; CSNAT = carer support needs assessment tool. This figure is adapted by permission from Iyer, AF. The Role of Palliative Care in COPD. Chest 2022;161: 1250–1262.

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The coronavirus disease (COVID-19) pandemic brought unprecedented changes to the delivery of healthcare, including the rapid implementation of telehealth and virtual technology (38). The potential value of telehealth in delivering palliative care is difficult to overlook, especially in partnership with community-based programs. Telehealth may be particularly advantageous in delivering palliative care to those with serious respiratory illness who may have mobility and transportation barriers and those in remote or resource-limited settings (39, 40). There also are legitimate concerns that technology could worsen inequities (41), and the unintended consequences of remote delivery of palliative care for patients with serious respiratory illness are largely unexplored (42). However, models of telehealth primary palliative care delivered in a collaborative fashion with rural, community nursing teams have been successful (43, 44).

Measurement is a fundamental principle of illness management. As Edwards Deming noted, “if you can’t measure it, you can’t improve it”. Interprofessional approaches to symptom assessment and management in serious respiratory illnesses offer opportunities for more effective collaboration and coordination of care across disciplines. This is vital as patients with serious respiratory illness can experience significant symptom burden (45–48); however, symptoms often go undetected by clinicians (49–51) or are underreported by patients during routine clinical encounters (52). Detailed patient-reported symptom assessments can increase rates of symptom discussions between patients and clinicians (53–55), intensify symptom management by clinicians (53, 56, 57), and improve patient symptom control and health outcomes such as QOL (58–60). Comprehensive, individualized symptom assessments help determine the true impact of an illness on a patient’s life, including limitations of activity, psychological manifestations of disease, missed work and economic hardships, and effects on family routines and overall wellbeing, among others. Accurate symptom assessment is also essential for consideration of additional therapeutic approaches and prognostication (61–66).

Individualized, evidence-based symptom assessments should occur routinely to assess change and identify new symptoms. Important symptoms to assess among patients with serious respiratory illness include chronic dyspnea or breathlessness, episodes of dyspnea crisis, cough, pain, fatigue, sleep disturbances/insomnia, psychological and spiritual distress or suffering (e.g., anxiety, panic attacks, depression, existential angst, and sense of meaning), and weight loss/anorexia (47, 67–69) (Table 4). These symptoms may present in isolation or as symptom clusters, which are a nonrandom distribution of symptoms suggesting a common etiology or pathway (131–134). Pain–insomnia–fatigue and dyspnea–cough are commonly recognized clusters (135). In addition, social assessments should be conducted periodically, including patient relationships with their partners or caregivers with attention to caregiver support and strain, as there is a significant correlation between patient and caregiver health status (20, 25, 136–138).

Central to symptom management in several serious respiratory illnesses is pulmonary rehabilitation; for people with COPD and ILD, it is an effective intervention for breathlessness, fatigue, and emotional symptoms (139, 140). This and other nonpharmacologic treatment options may complement disease-directed pharmacologic therapies such as inhalers, nebulizers, mucus clearance medications, immunosuppressants, and antifibrotics, among others (66). Although not exhaustive, some of the more common pharmacologic and nonpharmacologic therapies are listed (Table 5). Low-dose opioids are the mainstay of refractory breathlessness treatment in patients with advanced cancer; however, they are often underused in those with serious respiratory illness because of concerns they may reduce respiratory drive and hasten death. However, the potential for serious opioid-related side effects may be overstated, as a recent trial found that low-dose oral sustained-release morphine improved health status in patients with COPD without causing hypercapnia or other serious adverse effects (163). Additional advanced palliative therapies may be considered in select patients if the potential benefits outweigh the risks (e.g., endobronchial valves in COPD, palliative radiation, or stents in lung cancer).

Clinicians should encourage self-care maintenance among patients with serious respiratory illness as it is an essential treatment adjunct that can improve QOL, reduce respiratory-related hospital admissions, and decrease dyspnea (164). According to the middle-range theory of self-care in chronic illness, interventions may focus on one of three related dimensions: self-care maintenance, monitoring, and management (165). Self-management of breathlessness among patients with serious respiratory illness should be a focus as chronic breathlessness causes significant panic, distress, and desperation that significantly limits daily activities and social life (166). Among patients with serious respiratory illness, components of self-care interventions include recognition and treatment of exacerbations, physical activity and exercise behaviors, and education and tools to self-manage symptoms such as breathlessness (164, 167). For instance, clinicians can help patients and caregivers in developing an action plan for breathlessness with instructions for worsening symptoms, including crises. These action plans may include home spirometry monitoring, starting an oral corticosteroid, temporarily limiting strenuous activities, avoiding tobacco products (if applicable), practicing breathing–relaxation training, receiving massage therapy, or notifying their clinicians (168, 169). Patients and their caregivers can become adept at preventing, controlling, and managing the physical, psychological, and social consequences of respiratory illness, and clinicians should encourage self-care management activities while acknowledging their potential limitations.

ACP is a process that supports persons “at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness” (7). Goals of care (GOC) discussions may help ensure that care is consistent with patient preferences, and these discussions can be framed around specific medical interventions (e.g., intubation and mechanical ventilation). However, this committee considered a broader definition of GOC discussions as an important component of the ACP process in developing a better understanding of patient values and preferences and does not distinguish these as separate constructs. The ethical principle of respect for patient autonomy underpins the ACP process and autonomous decisions as those that are made intentionally and with substantial understanding and freedom from controlling influences (170). ACP positively impacts the quality of end-of-life care (171, 172) and can support patients, surrogates, and clinicians by avoiding crisis-oriented decision-making at the very end of life that may be inconsistent with patient goals and increase the burden and stress for surrogates (173–176). This is particularly relevant for patients with serious respiratory illness who are at elevated risk of losing the ability to communicate because of unexpected acute deterioration and the need for decision-making after acute respiratory failure (175, 177–180). As a result, pulmonary-critical care clinicians are well-positioned to be leaders in conducting ACP discussions among patients with serious illness and their families.

ACP conversations may include the creation of documents such as advance directives, living wills, assignment of a healthcare proxy, and POLST (Portable/Physician Orders for Life-Sustaining Treatment) that are readily available to the healthcare team. These forms should be reviewed and updated by patients on a regular basis as health or conditions change. However, completion of these documents without considering the quality of the preceding patient–clinician communication should never be used as a quality metric. In addition, ACP documents have limited ability to address all potential health scenarios; thus, healthcare proxies should be prepared to make substituted judgments (181–184) and, ideally, with patient consent, should be included as active participants in ACP discussions as healthcare decisions can be overwhelming.

ACP consists of structured communication and documentation that are woven into the regular process of care provided to patients and their families and should begin in the early stages of respiratory illness (Figure 5). This early and iterative approach may help to normalize these conversations and is a key recommendation of the 2014 Institute of Medicine, Dying in America Report (185). Early initiation of ACP also is consistent with a recent consensus definition that states that ACP should support persons at any age or stage of health (7). In addition, early ACP can strengthen patient–clinician relationships and provides an opportunity to introduce the concept of palliative care (186–188). Respecting Choices is one successful model intended to normalize ACP communication using a stepped approach in which the early stages of the process may only focus on asking patients to identify a medical decision-making surrogate (189).

Figure 5. Continuum of advance care planning integration in serious respiratory illness. The continuum of ACP in serious respiratory illness is a longitudinal process of communication that begins soon after illness diagnosis (stage 1: first arrow) and increases in intensity on the basis of patient illness trajectory (stages 2–4). This process should be free of coercion, and clinicians should be alert to signs of patient distress or discomfort. Patient-designated surrogates or healthcare proxies should be included across all stages with patient permission. ACP = advance care planning.

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Improving uptake of ACP is not without significant challenges (190–192), including the need for clinicians to acquire specialized knowledge and skills through feedback from ACP facilitators and/or serious illness communication experts, as well as ongoing opportunities to practice these skills. Unfortunately, a lack of knowledge or formal training in ACP persists among pulmonary–critical care clinicians (193–195) despite evidence that training and education have positive effects on clinician knowledge, attitude, and skills in conducting ACP (196). For these reasons, completion of serious illness communication and ACP training should be required of all pulmonary–critical care clinicians and trainees as a core competency. This training has been endorsed by representatives of the ATS, the American College of Chest Physicians, the Society of Critical Care Medicine, and the Association of Pulmonary and Critical Care Medicine Program Directors as Entrustable Professional Activities (197).

Despite the potential importance of ACP, it is worth noting emerging concerns about the limited evidence supporting the effectiveness of ACP in achieving goal-concordant care or in improving family member perceptions of quality of care (190, 198). These findings may be because of the inability to plan for or envision the myriad of potential health situations that may arise over the course of an illness and the inability to foresee the emotional and psychological challenges that can occur during in-the-moment decision-making (190, 198). Some dissensus existed within the committee regarding the importance and future role of ACP in serious respiratory illness, given concerns about its effectiveness and the focus within the ACP literature on the creation of documents (e.g., advance directives). These concerns reinforce the committee's consensus recommendations regarding ACP for 1) early identification of healthcare proxies to enable them to better prepare for in-the-moment decision-making using substituted judgment; and 2) a shift in focus away from document completion as the goal of ACP to ensuring high-quality serious illness communication occurs instead.

Informal caregivers or caregivers (e.g., family members, partners, and friends in unpaid roles) provide essential support to patients living with serious respiratory illness (199) which can be rewarding and provide caregivers a sense of accomplishment (200). Caregivers are alternatively referred to as “carers”, “care partners”, or sometimes “supporters”. The caring role can also have negative impacts on the caregiver(s), and both patients and caregivers report a range of unmet support needs throughout the illness course (199, 201, 202). These can include a need for disease education, learning how to use respiratory equipment (e.g., oxygen delivery devices), information about financial assistance, and help navigating the healthcare system. Supporting the caregiver helps to sustain caregiving, thereby supporting the patient (See Box 1).

The first step in supporting caregivers is identifying them (199). Many patients and caregivers do not recognize labels such as “caregiver” or “carer” and can confuse these labels with formal (i.e., paid) caregivers. Caregivers see themselves in relational terms (e.g., spouse or partner, child, or friend), and patients may not accept the idea of being “cared for” and so reject the label. It is, therefore, better to reframe identifying questions to patients as “who gives you help and support at home?” (199, 201). Clinicians can thus be instrumental in helping caregivers access crucial support services and financial benefits. Clinicians should also acknowledge that there can be multiple caregivers performing various roles, and these caregivers may be geographically distant and can change throughout the lifespan of the patient. Therefore, ongoing identification of caregivers should be revisited during follow-up clinical encounters.

Condition-specific needs related to caregivers of patients with serious respiratory illness exist (201). For instance, patients being evaluated for lung transplantation and those on the transplant waitlist are required to have an identified caregiver present at transplant evaluation and through posttransplant. Incorporating an assessment of caregiver needs early in the lung transplant process may be useful in identifying caregivers who need more support from the transplant team and/or a palliative care consult in the posttransplant period (202). Respiratory illnesses also often require technical equipment (e.g., mechanical ventilator and oxygen delivery device), and palliative care may include helping caregivers adjust to being responsible for this equipment (203, 204).

Caregiver support is everyone’s responsibility. The caregiver should be acknowledged by the clinician and, at a minimum, asked how he/she is doing (directly or via the patient if the caregiver is not present). Evidence-based approaches (e.g., CSNAT-1 [Carer Support Needs Assessment Tool Intervention]) (205, 206) allow caregiver support needs to be comprehensively identified and addressed. Exploring caregiver needs jointly with the patient can raise patient awareness of caregiver needs, but opportunities to talk about needs separately from the patient should also be provided. As needs change, conversations should be revisited along the illness trajectory, including into bereavement. It can sometimes take a clinician to identify caregiver needs, as caregivers themselves may not recognize them (i.e., being overprotective of the patient). Timely/early provision of information on support options can reinforce the idea that caregivers also need to care for themselves.

Clinicians should take a person-centered, caregiver-led approach to meeting needs and identifying solutions. Conversations around support needs are enough to make caregivers believe they are more supported. Other times provision of information or education, resource signposting (Table 6) or referral is required (e.g., support groups, advocacy organizations, psychological support, or wellbeing services). Caregivers should be kept informed and involved in decision-making (with the permission of the patient). Technology can facilitate this for geographically distant caregivers (e.g., telephone, video conferencing, or Caring Bridge [207]), although technical skills and preferential barriers may exist.

Given the evidence base for the benefits of palliative care in serious respiratory illness, it is imperative that palliative care services are equitably distributed, of similar quality, and meet the needs of all eligible people. Access to palliative care is a fundamental right regardless of citizenship status, sex, race/ethnicity, houselessness, LGBTQIA+ status, rurality of home residence, or insurance status. However, evidence demonstrates that social, cultural, and economic factors continue to limit access (208–210). Striking disparities in access exist among socially disadvantaged populations (211) as well as rural communities (4, 212). Inequitable access may be worse internationally, especially in low- and middle-income countries, as only 14% of the global population has access to the highest degree of palliative care, which outside of the United States and Canada is concentrated in Western Europe and Australia (5). Synonymous with inadequate access to palliative care, racial and ethnic disparities in opioid treatment and accessibility for pain exist in many communities (213–220). This is particularly meaningful as respiratory illness disproportionately affects individuals from disadvantaged populations (221), and the lowest socioeconomic groups are up to 14 times more likely to be afflicted than the highest group (222).

Even in similarly-resourced settings, disparities in the quality of palliative care are reported, particularly regarding clinician communication (223–226). Breakdowns in communication can result in more intense care at the end of life, increased in-hospital deaths, and increased financial burden and complicated bereavement for families (227). Ineffective communication also contributes to reduced knowledge and completion rates of advance care planning among African Americans, Hispanics, and Asians (228–233). Ensuring equitable access to advance care planning among disadvantaged populations is important; however, these efforts should emphasize efforts to determine patient readiness, avoidance of coercion, and development of a better understanding of cultural beliefs and practices about and attitudes toward end-of-life care choices enabling individualized approaches. Underlying ineffective communication may be a result of a lack of cultural awareness, such as proper language/linguistics regarding end-of-life issues among clinicians, which likely perpetuates the ongoing lack of trust among some groups (234). Both the National Quality Forum and National Consensus Project for Quality Palliative Care identify the provision of culturally sensitive care as one of eight core domains of high-quality palliative care (235). Successful palliative care interventions to reduce disparities have included strategies to enhance cultural awareness among clinicians and improve health literacy among patients (231, 236–239). In addition, efforts to diversify the palliative care workforce, including healthcare professionals, social workers, spiritual care workers, and community health workers, are long overdue and will require innovative solutions. Comprehensive training (e.g., palliative care terminology and communication; active listening; and cultural traditions, awareness, and sensitivity) of pulmonary–critical care clinicians is essential in the provision of primary palliative care. (Table 7)

Natural disasters and catastrophic mass casualty events, such as COVID-19 or influenza pandemics, are increasing in frequency and severity, resulting in widespread human, material, economic, and environmental impacts yielding thousands of victims whose needs overwhelm local and regional healthcare systems, personnel, and resources (255). These events generally fall into two categories: 1) ‘‘big bang’’ single incidents with immediate or sudden impact, such as airplane or train crashes, which yield large numbers of casualties at the outset of the event with few added over time; and 2) ‘‘rising tide’’ incidents that start with few casualties such as pandemics or widespread, ongoing exposures to chemical, biological, and nuclear agents yielding a gradual increase in the number of people affected over time, rising to catastrophic numbers with prolonged impact and necessitating a more prolonged response (256). Such conditions necessitate deploying scarce resources in a manner that is different from usual care, ranging from conventional to contingency to crisis standards of care.

The COVID-19 pandemic has highlighted increasing palliative care needs across healthcare systems (257). As illustrated by the pandemic, crisis palliative care focuses on three domains: 1) management of symptoms; 2) discussion of patient wishes, expectations, and values; and 3) supporting families of those with life-limiting injury or illness (209). At a minimum, palliative care in catastrophic disasters should include aggressive and appropriate treatment of pain and other symptoms and support and comfort for patients, their families, and their clinicians (256–260). Although the primary goal of a coordinated response to a mass casualty event is to maximize the number of lives saved, a comprehensive response should also seek to minimize the suffering of those who may not survive (256). As healthcare clinicians, there is always something to offer, even at the end of life. A framework for providing palliative care during a catastrophic event is summarized in Table 8.

Currently, there are numerous challenges to delivering palliative care to the right patient at the right time. In fact, it is unclear who ideally should receive palliative care, from whom it should be delivered, and what exactly the appropriate intervention(s) should be. Patient and caregiver populations for palliative care research studies should be identified on the basis of needs for, and the likelihood of benefit from, palliative care services. Palliative care trigger tools (i.e., tools that indicate the need or suggest the timing of referral) are available for specific patient populations, such as those admitted to an intensive care unit (ICU) (261). However, given that palliative care triggers may not be associated with palliative care needs (125), measurement tools to differentiate patients who could benefit from primary vs secondary palliative care further upstream in the illness trajectory (i.e., in ambulatory settings) would be helpful. Palliative care outcome measures should expand beyond healthcare system/usage outcomes (262, 263) as palliative care services often include complex interventions such as ACP and symptom management (264). Therefore, multiple outcomes (e.g., patient- and family-centered measures) and implementation outcomes like adoption and sustainability and the use of newer study designs such as MOST (multiphase optimization strategy) (265) are needed to examine which specific component(s) of the intervention are effective, including measuring specific impacts proximal to the intervention and potential harms (20). Research is needed to identify when to initiate palliative care to achieve maximal benefit for patients and families for specific chronic respiratory illnesses (e.g., COPD) (48). Effective telehealth-based palliative care delivery models that include sustainable payment models (266) are critical to reaching patients living in rural and/or underserved communities.

Developing and testing primary palliative care training interventions that are practical, scalable, and embedded within existing clinical settings is an additional priority. The critical shortage of palliative care specialists (267) necessitates pulmonary–critical care clinician competency in fundamental palliative care skills. More work is also needed to develop models with integrated or comanagement of primary and secondary palliative care in ways that are acceptable, sensible, and efficient (268). Application of novel methodologies and study designs are needed to improve the quality of palliative care evidence in pulmonary and critical care medicine. Examples include quasi-experimental/natural experiments, adaptive designs, hybrid and pragmatic trials, and mixed methods research. Pulmonary palliative care interventions that have been conducted in ICU settings can guide this work; however, further research is urgently needed for seriously ill patients and their caregivers managed in pulmonary outpatient clinics. Lastly, it is critical to include people of color, non-English speakers, and members of rural communities in future studies to ensure a better understanding of their unique palliative care needs (269). Expanding funding for the cultural and linguistic adaptation of effective palliative care interventions to diverse populations offers a high-value opportunity to broaden the reach of palliative care.

The “culture problem” of integrating palliative care into pulmonary and critical care medicine is a challenge that is not unique to the field. Despite recommendations from professional societies to offer palliative care to patients with advanced cancer, the adoption of palliative care is variable depending on the service and setting (22, 270). Therefore, trials are needed to test the effectiveness of efficacious interventions with primary aims focusing on the outcomes of implementation science, such as clinician adoption of the intervention and sustainability in different practice settings. A clearer framework could help the field guide and successfully implement palliative care while enhancing its scalability. Palliative care interventions in the ICU and pulmonary outpatient settings appear promising, but more research is needed to understand the full range of patient, family, and healthcare system impacts (271).

Technological advancements, including the leveraging of electronic health record systems for useful clinical tasks and the use of methods such as artificial intelligence and machine learning, are likely to accelerate the conduct of future clinical research. Examples include patient identification for study criteria and outcomes collection. Technology in the form of telehealth can be used to support clinician education, patient self-management, and improved care delivery and disparities. A number of self-directed mobile app-based interventions targeting psychological distress and physical symptoms are also available (272–274). Lastly, researchers from around the globe can meet and collaborate without traveling by using available technology to access data and conduct collaborative research to accelerate innovation.

Other important research priorities include characterizing the impact of clinicians engaging in early and regular GOC discussions on “in-the-moment decision-making” and goal concordant care (191, 275). The palliative care field is making progress in developing measures of goal concordance (276) and applying them in research studies. Approaches toward managing common symptoms in respiratory illnesses, such as acute breathlessness, cough, and fatigue, require further investigation to improve the efficacy of patient and caregiver self-care management as well as their QOL. For example, the effectiveness of specific opioid formulations and routes as well as target illnesses has not been established. Furthermore, the effects in daily life of supplemental oxygen in patients without hypoxemia and the use of heliox on dyspnea and functional ability are unknown (277). In addition, studies on the effects of nonpharmacological approaches to symptom management, such as graded exercise therapy for fatigue, are important next steps to tailor care. Lastly, caregiver research is a priority as the demand for informal caregiver involvement in patient care increases while the caregiver population ages. Developing and evaluating dyad-targeted palliative care interventions for patients and caregivers living with serious respiratory illnesses is important as they may improve QOL, and this research can inform state and federal policy initiatives on caregiver support.

In summary, to comprehensively address the research priorities identified by the members of this committee (Table 9), it is imperative to engage a broad group of partners that includes patients, families, caregivers, policymakers, and funders (e.g., National Institutes of Health, Patient-Centered Outcomes Research Institute, and foundations) to help prioritize topics and ensure adequate funding (264, 265).