Practicing primary palliative care: A call to action

The history of surgery and the moral imperative to palliate pain and suffering are intimately intertwined. Despite the evidence that concurrent palliative care is clinically beneficial and of high value for patients with life-limiting illness and at the end of life (EOL), contemporary surgical literature and educational initiatives for surgeons and surgical trainees demonstrate a concerning lag in incorporating primary or specialty palliative care into standard surgical practice when all operative interventions have failed or been withheld.

This article describes surgery’s traditional reluctance to provide palliative care as a precursor to transitioning to comfort-focused care at the EOL. It addresses the barriers to educational opportunities for surgical trainees and surgeons that would enable this level of care, given the aging and infirm patient population who would benefit from it. It also serves as a call to action to train more surgeons and other clinicians in palliative care and shared decision making.

An unmet need

Underuse of palliative care for patients with life-limiting illness and barriers to the provision of quality EOL care are hardly limited to the surgical profession. A recent survey of health care providers revealed that 34 percent of participants either disagreed or were neutral when asked whether they feel well prepared to provide palliative and EOL care, and 30 percent of the respondents reported that they felt ill prepared to determine when to refer patients to palliative care and hospice. More than half of the respondents said they did not believe that team members delivered clear and accurate information to patients and families, and 82 percent agreed that training in palliative and EOL care should be mandatory.¹

Betani and colleagues surveyed 102 surgeons and medical physicians who treat patients with advanced cancer and symptomatic surgical conditions.² They found that surgeons reported fewer hours of palliative care training—a median of 10 hours—compared with medical oncologists, who had a median of 30 hours, and medical intensivists, who had a median of 50 hours. Betani and colleagues also reported that 25 percent of surgeons had no palliative care training and that those surgeons recommended major operative interventions more frequently than those who had undergone 40 hours or more of palliative care training. The report stated, “These findings highlight the need for greater efforts system-wide in palliative care education among surgeons, including incorporation of a structured palliative care training curriculum in graduate and continuing surgical education.”² As the U.S. population ages, health expenditures skyrocket, and outcomes plateau, we must incorporate the basic tenets of primary palliative care into our practices and when training the next generation of surgeons.

To date, the most studied surgical patients with unmet palliative care needs have advanced malignancies, need emergency general surgery, or suffer from traumatic injuries. In 2017, Gani and colleagues found that inpatient palliative care services were used 8.5 percent of the time during an initial admission for cancer. They concluded that patients admitted with gastrointestinal or thoracic malignancies undergoing surgery had 79 percent lower odds of receiving a palliative care consultation than patients who did not undergo a surgical procedure during their inpatient admission.³ Temel and colleagues and El-Jawahri and colleagues both found in their prospective randomized controlled trials that patients coping with life-limiting illness from either nonsmall cell lung cancer or hematologic malignancies undergoing hematopoietic stem cell transplantation had improved in quality of life (QOL), mood and depression, and post-traumatic stress disorder when offered palliative care concurrent with standard oncologic management.^4,5 Moroney and Lefkowits concluded that high-quality data from medical oncology should inform our practice as surgical oncologists with respect to palliative care integration, and surgeons should adopt American Society of Clinical Oncology (ASCO) recommendations for routine palliative care integration from the advanced cancer time of diagnosis.⁶

Upstream palliative care intervention also was found to reduce less aggressive care at the EOL at the same time as conferring a longer survival benefit.⁴ And although insufficient data are available to support early palliative care for patients with operable malignancies, multicenter randomized control trials are in progress to determine its impact.^7,8 Lilley and colleagues concluded that surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients’ physical, emotional, social, and spiritual well-being and QOL.⁹ The therapeutic benefits of technical advances, such as image-guided interventions and laparoscopic and robotic approaches to surgery, have expanded opportunities for surgical palliation, as well as resection for curative intent.

Professional guidelines

In 2017, ASCO published updated palliative care practice guidelines that call for integrating palliative care into standard oncologic management when a patient is diagnosed with advanced cancer, highlighting the clinical benefit of concurrent oncologic and palliative care.¹⁰ The National Comprehensive Cancer Network (NCCN) practice guidelines—a recognized peer-reviewed standard for clinical policy in cancer care—specify that the goal of palliative care is to anticipate, prevent, and reduce suffering and to improve QOL throughout the oncologic care continuum. Based on these data, surgeons should consider integrating upstream concurrent palliative care into standard surgical oncologic management.¹¹

The trauma and acute care surgery literature identifies this patient population as similarly burdened with suffering and at high risk for unmet palliative care needs.¹² An estimated 25 percent of patients hospitalized for trauma are older than age 65.¹³ Cooper and colleagues found that 16 percent of patients ages 65 and older who underwent emergency laparotomy died during their admission, and 30 percent died within six months after discharge.¹⁴ Therefore, it is possible that one-third of this study population was eligible for hospice enrollment and may have chosen that care option had it been discussed during their hospital admission or postoperative course. Improved communication during the decision-making process—including efforts to routinely address advance care planning by surgeons with patients and/or their surrogates—are necessary to ensure that patients receive the care that they want and to avoid nonbeneficial treatment.¹⁵ A recent study by Lavanchy and colleagues reviewed roughly 150 octogenarians undergoing emergency abdominal operations and noted that one-third of early mortality was attributable to withdrawal of care. They conclude that interdisciplinary decision making with patient and family involvement may avoid ethically questionable interventions in octogenarians.¹⁶

Lilley and colleagues recently conducted a review of Medicare claims data for patients older than 65 years of age who were admitted with traumatic injury over a five-year period. They found that only 2 percent of these patients who died within six months after discharge received inpatient palliative care.¹⁷ These data suggest that palliative care may be underused in trauma care and, therefore, a potential means of greatly improving patient-concordant outcomes while at the same time reducing unwanted care and the associated costs.

The American College of Surgeons (ACS) Trauma Quality Improvement Program (TQIP^®) Palliative Care Best Practices Guidelines recognize that palliative care should be delivered in parallel with life-sustaining trauma care throughout the care continuum from injury through recovery. The TQIP guidelines state, “Core trauma palliative care can and should be provided by trauma center teams even if palliative care consultation is not available,” and “optimal care requires trauma physicians and nurses to have basic competencies in primary palliative care, pain and symptom management, and end-of-life care.”¹⁸

What is palliative care?

Palliative care is an emerging medical and surgical subspecialty focused on improving QOL for patients and their families facing life-limiting illness. Palliative care services are unique and strengthened by an interdisciplinary team that addresses eight domains of care, such as structure and process; physical, psychological/psychiatric, social, spiritual/religious/existential, and cultural care at the EOL; and ethical/legal aspects of care that may be affecting patients and their families during life-limiting illness. Palliative care providers facilitate patient-centered communication between all the stakeholders involved in a patient’s case, enhance patient-family unit understanding of illness and prognosis, and strive to improve patient and caregiver QOL through an informed consent and shared decision-making process that seeks to arrive at a comprehensive patient-concordant care plan. The arduous path traveled while receiving health care for life-limiting illness requires that providers frequently engage in goal-oriented discussions to define and redefine what patient-concordant care is for each individual across the care continuum.¹⁹

The distinction between palliative and hospice care often gets blurred because both involve an interdisciplinary team approach to care for patients with life-limiting illnesses. Therefore, one can think of hospice as palliative care during the last six months of life, whereas palliative care has no prognostic correlate. Additionally, primary palliative care refers to interventions that all clinicians should perform when caring for patients with life-limiting illness, such as basic symptom management, goals of care, and code status discussions. Specialty palliative care refers to interventions that a dedicated interdisciplinary team would offer for more complex goals of care discussions, symptom management, and transitions of care to hospice.²⁰

In 2005, the ACS Statement on Principles of Palliative Care expanded on an earlier statement to include a broad range of surgical patients and clarified the misconception that palliative care is synonymous with EOL care.²¹ Today, the patient population most thought to benefit from concurrent palliative care includes all patients with a life-limiting illness, regardless of life expectancy. National Palliative Care Registry data suggest that 1 to 1.8 million patients admitted to U.S. hospitals annually could benefit from palliative care but are not receiving it.²² Taking all patients regardless of clinical setting into consideration, the Center to Advance Palliative Care suggests that approximately 6 million people in the U.S. could benefit from palliative care.²³ It is worth mentioning that Congress initiated the Medicare hospice benefit in 1982, which became permanent in 1986, for patients with a terminal diagnosis, defined as a prognosis of six months or less. Today, physicians working in hospice certify that patients enrolled have a six-month or less prognosis if their terminal condition runs its natural course, and most hospice patients have transitioned their goals of care from disease-directed to comfort-focused.

In 1998, 10 years before the first American Board of Surgery (ABS)-sponsored Hospice and Palliative Medicine board exam—an effort championed by the late Olga M. Jonasson, MD, FACS—the ACS gave voice to the value of palliative care for surgical patients, making palliation and EOL care a College priority. All 10 principles outlined in the 1998 ACS Statement of Principles of Palliative Care have been preserved but modified to reflect contemporary language. The following five principles are worth highlighting in this article:²⁴

• Honor the right of the competent patient or surrogate to choose among treatments, including those that may or may not prolong life
• Identify the primary goals of care from the patient’s perspective, and address how the surgeon’s care can achieve the patient’s objectives
• Strive to alleviate pain and other burdensome physical and nonphysical symptoms
• Provide access to therapeutic support, encompassing the spectrum from life-prolonging treatments through hospice care, when they can realistically be expected to improve the QOL as perceived by the patient
• Recognize the physician’s responsibility to discourage treatments that are unlikely to achieve the patient’s goals, and encourage patients and families to consider hospice care when the prognosis for survival is likely to be less than a half-year

The ACS represents more than 80,000 clinicians worldwide and has been a driving force for improving the care of surgical patients since 1913. In the early days of the ACS, Fellows pledged “to place the welfare of my patients above all else.”²⁵ In 2016, the ACS Fellowship Pledge was amended to state, “I pledge to place the welfare and rights of my patients above all else.”²⁵ This new pledge acknowledges a patient’s right to treatment that may or may not prolong life as described in the 1990 Patient Self-Determination Act, which requires institutions to honor health care decision-making rights by recognizing and respecting patient advance directives at the time of hospital admission.

Another initiative that highlights the importance of honoring patient rights and encourages the practice of patient-centered care is the fourth edition of The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, published in 2018. These evidence-based guidelines were designed to promote consistent, accessible, comprehensive, optimal palliative care after research demonstrated high value for patients with serious illness served by palliative care teams across care settings.¹⁹ The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care define serious illness as “a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or QOL or excessively strains their caregiver.”²⁶

The Institute of Medicine (now known as the National Academy of Medicine) published a consensus report in 2014, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, which indicates that improving the quality and availability of medical and social services for patients and their families not only enhances QOL up and until EOL, but also contributes to a more sustainable health care system.²⁷

Training residents to care for patients with serious life-limiting illness

Surgical culture values palliative and compassionate EOL care, but also places barriers to its provision in training and practice.²⁸ In addition to systems issues, such as limited resources and miscommunication across medical specialties and among other health care professionals, surgeon knowledge and training has been cited as the largest barrier.²⁹ Several aspects unique to surgical training and practice likely represent barriers toward increased use of integrating palliative care into standard surgical management, such as surgeon attitudes, exposure, lack of training, and difficulty with prognostication.^28-30 Surgical intervention is more likely to be invasive than medical or interventional care. Therefore, the selection of candidates for surgery potentially poses a conflict of interest when a patient with life-limiting illness and a limited life expectancy might benefit from a palliative procedure to improve QOL without extending life. In addition, surgical practice and decision making is traditionally hierarchical, with ultimate responsibility for surgical outcomes resting on the shoulders of the attending surgeon. Personal responsibility and ownership of surgical outcomes are inherent to surgical practice and culture, such that adverse events or deaths may be perceived as personal failures even when death is anticipated. In the context of metrics that track surgical morbidity and mortality as indicators of health care quality, providing palliative surgery may be an unfortunate conflict of interest. A Current Procedural Terminology code modifier that would categorize interventions as palliative in terminal patients might overcome this underlying tension of morbidity and mortality statistics for proceduralists in the privileged position to perform palliative interventions for patients at the EOL. Punitive metrics may reinforce the surgeon’s sense of personal failure and may discourage prioritization of a palliative approach to care.^31,32

As surgeons working with learners, our responsibility in caring for our patients includes modeling patient-concordant surgical care for the next generation of clinicians. In this regard, Klaristenfeld and colleagues found that “most surgical programs have no formal curriculum to teach palliative care.”³³ Communication skills, like technical skills, should be considered invaluable to surgical practice. Bakke and colleagues reported that despite caring for patients near the EOL, surgeons report low confidence in their ability to facilitate EOL conversations, a discrepancy that exists despite competency requirements and professional medical society recommendations.³⁴

Larkin and colleagues demonstrated significant improvement in empathetic communication for first-year residents. The authors concluded that a unique and comprehensive human factors curriculum is effective in building communication competency for junior-level residents.³⁵ In 2014, Falcone and colleagues asserted that communication skills-based training is needed across all residency levels.³⁶

The Surgical Council on Resident Education (SCORE)—a not-for-profit consortium composed of the ABS, ACS, Accreditation Council for Graduate Medical Education (ACGME), and other professional organizations—created a 2017–2018 curriculum that includes a section addressing interpersonal and communication skills, along with other relevant medical ethical issues that present in clinical practice.³⁷ Although this national curricular intervention is timely, it remains unclear to what degree each program will incorporate protected time for learners during surgical residency. And relevant to this issue, the SCORE curriculum still characterizes palliative care as an ethical issue in clinical surgery at the EOL.³⁸

Similarly, at a time when our nation is facing an opioid-prescribing crisis, our role in responsible pain management warrants educational advances and constant review. Last year, the Journal of Surgical Education published a report by Chui and colleagues that indicated that 8.5 percent of a surveyed cohort of all level residents reported receiving no formal best practice training in pain management, and 6 percent said they received no training in opioid prescribing.³⁹

With learner performance on the ABS in-training exam being a priority for most program directors, it is unknown how much dedicated time will be spent teaching primary palliative care skills. Literature looking at specific educational interventions, such as an ICU-based palliative and EOL care curriculum,⁴⁰ case-based palliative care workshop,⁴¹ or surgical palliative care immersion training,⁴² consistently suggests that a little time spent during surgical training pays dividends to increase knowledge, change attitudes, and gain confidence in palliative and EOL care for learners. One can only postulate that such educational initiatives for learners will translate to more patient-informed care and satisfaction.

To date, the most comprehensive and foundational teaching tool for primary palliative care skills is the 2009 ACS Surgical Palliative Care: A Resident’s Guide.²⁴

Putting the dearth of palliative care physicians and surgeon specialists into perspective, as of January 2016, nearly 6,400 active hospice and palliative medicine (HPM) physicians and surgeons were reported by the American Medical Association. On average across the U.S., there were 15.7 HPM physicians per 100,000 people aged 65 years and older.⁴³

Using those statistics, that is one HPM physician/surgeon for every 6,250 people versus one cardiologist for every 71 people and one medical oncologist for every 141 people. As of the 2018 hospice and palliative medicine certification exam administered by the American Board of Internal Medicine (ABIM) and sponsored by the ABS, 79 surgeons have become board certified in HPM.⁴⁴ A total of 17 surgeons since 2012 also are HPM fellowship trained. According to the ABS website, only a minority of surgeons have sat for the HPM board exam since 2012, when fellowship training became a requirement.⁴⁵ This tiny subset of hybrid surgeons is not anticipated to flourish now that a one-year, time-based fellowship is required to sit for the HPM board exam, but efforts are under way to support the development of competency-based fellowship training programs, which are a more viable option to accommodate HPM training simultaneously with clinical practice, research, and other professional endeavors.⁴⁶ This and other part-time options for fellowship training would be particularly beneficial for surgeons interested in remaining engaged with their surgical practices.⁴⁷

Unfortunately, the number of surgeons who will complete time-based fellowship training in hospice and palliative medicine is unlikely to equal or exceed the number of surgeons grandfathered in who will retire in the next decade. Furthermore, the growing health care demands of the aged population are expected to outstrip the total number of palliative care specialists across the country.⁴⁸

To optimally and responsibly care for our surgical patients, it is incumbent upon us as surgeons, mentors, teachers, and leaders to integrate primary palliative care skills into our daily intention in practice, and consult palliative medicine specialists when indicated—either directly when available or, if necessary, by alternative means, such as the emerging use of telcommunication.⁴⁹ This article is a call to action for surgeons to persist—in keeping with our history, innovative tradition, and ethical duty as patient advocates—in obtaining primary palliative care skills and ensuring that we do what is right for our patients.

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