Research priorities in surgical palliative care should go beyond generating data from traditional surgical morbidity or mortality metrics. Surgical researchers can seek to better understand care management complexities of surgical patients with serious illnesses in order to gather high-quality, patient-centered data; improve surgical patients’ experiences; and motivate surgical palliative care as a field.
Higher Risk for Iatrogenic Harm
More than 1 million patients with serious illnesses (ie, illnesses that are time limiting, negatively influence quality of life, and involve interventions that are burdensome to patients and families1) undergo major surgery annually.2 It is widely known that palliative care—focused on relieving pain, managing distressing symptoms, and improving quality of life3,4,5,—reduces health care costs6 and promotes better patient-physician communication.7 Yet seriously ill surgical patients are less likely than other seriously ill patients to receive palliative care.8 Two reasons for this disparity are a rescue-based cultural bias in surgery9 and an inability to accurately measure surgical palliative care quality solely with traditional surgical metrics (eg, morbidity and mortality). We argue here that failure to incorporate measures of seriously ill patients’ experiences10 undermines care that accords patients’ goals and exacerbates iatrogenic harm to patients.
Palliative Surgical Research
Measuring palliative surgical quality is complex. Surgical patients with serious illness often have competing conditions and priorities, making appropriate research outcomes difficult to identify.7 Patients with serious illness often prioritize health recovery outcomes (eg, time at home, relationships with loved ones)11 and are unable or unwilling to participate in research. Consequently, surgical palliative care research has used proxy outcome measures to capture key features of patients’ experiences when direct patient report is unavailable. For example, in a national study of Medicare beneficiaries with advanced cancer, patients’ end-of-life care intensity and quality was measured by health care utilization.12 Older patients who received a venting gastrostomy during their first hospital admission for a malignant bowel obstruction had fewer readmissions, less intensive unit care during their last 30 days of life, and greater hospice enrollment prior to death than patients receiving medical management.12
Data sources and analysis. Currently, national and quality program (eg, Medicare and the American College of Surgeons National Surgical Quality Improvement Program) data sets do not classify procedures based on surgeons’ intentions, which greatly limits researchers’ capacity to evaluate palliative surgery efficacy. Documenting surgeons’ intentions (eg, as curative or palliative) in patients’ health records provides critical data about surgical decision making and a procedure’s purpose so that appropriate metrics can be used to measure surgical performance, procedural success, and quality outcomes. Collecting longitudinal data about procedures having a palliative purpose from data registries and billing codes and then measuring associations between procedures and outcomes from patients’ perspectives (eg, symptom alleviation, pain relief, postoperative quality of life13,14) and from clinical viewpoints (eg, infection, death, prolonged hospitalization) would provide robust assessments of procedures’ quality and value to stakeholders.
Surgical patients with serious illness often have competing conditions and priorities, making appropriate research outcomes difficult to identify.
Patient-centered priorities. Outcomes that express whether and to what extent patients’ postoperative experiences accord with their values (eg, symptom alleviation, pain relief, postoperative quality of life, time at home, relationships with loved ones) must be prioritized in palliative surgical research. In one such study of 106 patients with advanced incurable cancer who underwent palliative surgery (ie, to control gastrointestinal obstruction, tumor-related symptoms, and jaundice), 90.7% reported symptom resolution or improvement.2 Another study of surgical patients with gynecologic malignancy found that 6 months of postoperative palliative care from advanced practice nurses resulted in patients experiencing less distress and better quality of life.15 Other metrics of quality outcomes from patients’ perspective include improvements in physical and psychological outcomes, functional independence, disability-free survival, social well-being, and numbers of days at home.13,16,17 For example, patients with symptomatic incurable cancer who received home-based postoperative palliative support had 5.5 more days at home in the last 2 months of their lives.18 Other researchers have evaluated quality in terms of patients’ postoperative recovery (eg, duration of postoperative mechanical ventilation, intensive care unit stay, and inpatient status in the last 6 months of their lives).19
Communication. Communication between surgeons and patients with serious illness should be regarded as a palliative surgery quality research priority,10 since linguistic and cultural differences between patients and clinicians can influence patients’ experiences.20 Clinicians’ clear communication about patients’ prognosis, underlying illness, and changes in health states is foundational to establishing and nourishing relationships, disclosing possible benefits and risks, promoting patients’ or surrogates’ informed consent to or informed refusal of procedures, and affirming clinicians’ ongoing support of patients and their loved ones.21,22 Communication is just one feature of surgeons’, patients’, or surrogates’ understanding23 that inform shared decision making about palliative surgical interventions. Little is known, for example, about how surgical patients with serious illnesses evaluate trade-offs (eg, between quality of life and survival duration). An abundance of literature evaluates improving communication interactions and improving documentation about advanced care planning,24,25,26 but patients’ or surrogates’ family perceptions about communication quality have been neglected.
The American College of Surgeons Geriatric Surgery Verification Quality Improvement Program to improve elders’ surgical care requires that preoperative documentation include a patient’s quotation about their overall health goals and goals of surgery and a surgeon’s description of how a surgical care plan is informed by the quoted goals.27 Measuring adherence to this practice standard will help assess perioperative communication and palliative surgical quality and help motivate goal-concordant care.
Kelley AS. Defining “serious illness.” J Palliat Med. 2014;17(9):985-985.
- Kelly MT, Sturgeon D, Harlow AF, Jarman M, Weissman JS, Cooper Z. Using Medicare data to identify serious illness in older surgical patients. J Pain Symptom Manage. 2020;60(2):e101-e103.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
- Rummans TA, Clark MM, Sloan JA, et al. Impacting quality of life for patients with advanced cancer with a structured multidisciplinary intervention: a randomized controlled trial. J Clin Oncol. 2006;24(4):635-642.
Morrison RS, Penrod JD, Cassel JB, et al; Palliative Care Leadership Centers’ Outcomes Group. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med. 2008;168(16):1783-1790.
- Morrison RS, Dietrich J, Ladwig S, et al. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood). 2011;30(3):454-463.
Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. National Academies Press; 2015.
- Olmsted CL, Johnson AM, Kaboli P, Cullen J, Vaughan-Sarrazin MS. Use of palliative care and hospice among surgical and medical specialties in the Veterans Health Administration. JAMA Surg. 2014;149(11):1169-1175.
- Mehtsun WT, Zheng J, Orav EJ, Lillemoe KD, Jha AK. Unintended consequences of the 30-day mortality metric: fact or fiction. Ann Surg. 2017;266(6):962-967.
- Sanders JJ, Curtis JR, Tulsky JA. Achieving goal-concordant care: a conceptual model and approach to measuring serious illness communication and its impact. J Palliat Med. 2018;21(suppl 2):S17-S27.
- Cooper Z, Courtwright A, Karlage A, Gawande A, Block S. Pitfalls in communication that lead to nonbeneficial emergency surgery in elderly patients with serious illness: description of the problem and elements of a solution. Ann Surg. 2014;260(6):949-957.
- Lilley EJ, Scott JW, Goldberg JE, et al. Survival, healthcare utilization, and end-of-life care among older adults with malignancy-associated bowel obstruction: comparative study of surgery, venting gastrostomy, or medical management. Ann Surg. 2018;267(4):692-699.
Myles PS, Shulman MA, Heritier S, et al. Validation of days at home as an outcome measure after surgery: a prospective cohort study in Australia. BMJ Open. 2017;7(8):e015828.
- Schwarze ML, Brasel KJ, Mosenthal AC. Beyond 30-day mortality: aligning surgical quality with outcomes that patients value. JAMA Surg. 2014;149(7):631-632.
- McCorkle R, Dowd M, Ercolano E, et al. Effects of a nursing intervention on quality of life outcomes in post-surgical women with gynecological cancers. Psychooncology. 2009;18(1):62-70.
- Lilley EJ, Cooper Z, Schwarze ML, Mosenthal AC. Palliative care in surgery: defining the research priorities. Ann Surg. 2018;267(1):66-72.
Chesney TR, Haas B, Coburn NG, et al; Recovery After Surgical Therapy for Older Adults Research–Cancer (RESTORE-Cancer) Group. Patient-centered time-at-home outcomes in older adults after surgical cancer treatment. JAMA Surg. 2020;155(11):e203754.
- Axelsson B, Christensen SB. Evaluation of a hospital-based palliative support service with particular regard to financial outcome measures. Palliat Med. 1998;12(1):41-49.
- Nabozny MJ, Barnato AE, Rathouz PJ, et al. Trajectories and prognosis of older patients who have prolonged mechanical ventilation after high-risk surgery. Crit Care Med. 2016;44(6):1091-1097.
- Sanders JJ, Berrier AI, Nshuti L, Tulsky JA, Lindvall C. Differences by race, religiosity, and mental health in preferences for life-prolonging treatment among Medicare beneficiaries. J Gen Intern Med. 2019;34(10):1981-1983.
- Pollak KI, Arnold RM, Jeffreys AS, et al. Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol. 2007;25(36):5748-5752.
Bernacki RE, Block SD; American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994-2003.
- Nabozny MJ, Kruser JM, Steffens NM, et al. Constructing high-stakes surgical decisions: it’s better to die trying. Ann Surg. 2016;263(1):64-70.
- Lamba S, Murphy P, McVicker S, Harris Smith J, Mosenthal AC. Changing end-of-life care practice for liver transplant service patients: structured palliative care intervention in the surgical intensive care unit. J Pain Symptom Manage. 2012;44(4):508-519.
- Mosenthal AC, Murphy PA, Barker LK, Lavery R, Retano A, Livingston DH. Changing the culture around end-of-life care in the trauma intensive care unit. J Trauma. 2008;64(6):1587-1593.
- Udelsman BV, Lilley EJ, Qadan M, et al. Deficits in the palliative care process measures in patients with advanced pancreatic cancer undergoing operative and invasive nonoperative palliative procedures. Ann Surg Oncol. 2019;26(13):4204-4212.
Geriatric Surgery Verification Quality Improvement Program. Optimal Resources for Geriatric Surgery: 2019 Standards. American College of Surgeons; 2019. Accessed July 31, 2021. https://www.facs.org/-/media/files/quality-programs/geriatric/geriatricsv_standards.ashx