Benefits include improved quality of life and symptom management.
Palliative care is patient-centered, coordinated care intended to decrease suffering and improve quality of life for patients with advanced disease. Palliative care may be offered to patients at end of life to ease distress-associated symptom burden and facilitate goals of care discussion or may be utilized for patients undergoing surgical or medical treatment with curative intent. Literature shows there is a significant unmet palliative care need in urologic oncology, and it is crucial that surgeons perceive palliative care as a management option in parallel with ongoing surgical care as opposed to an incompatible alternative; these specialties and concepts are not at odds with one another but are often intertwined and complementary. Palliative care has been shown to have myriad benefits for patients including improved quality of life and symptom management, as well as benefits for the health care system at large including decreased costs and health care utilization.1-3
There are several important points when considering palliative care in urologic oncology. First, the scope of palliative care is broad, and many services directed toward prolonging and enhancing quality of life are included under the umbrella of palliative care. These services must be considered as part of the larger construct. For example, hospice care is reserved for the imminently dying patient with an expected survival of less than 6 months and refers specifically to end-of-life care. Unfortunately, there exists a misconception that hospice care and palliative care are the same when hospice care is merely a facet of palliative care. Similarly, palliative surgery aims to improve quality of life through procedural interventions, such as surgery to relieve malignant obstruction, but represents only an aspect of palliative care. Finally, palliative care can be delivered by a trained palliative care specialist via “specialty palliative care” or may be provided by health care professionals within their own medical or surgical subspecialty; in this case, urologic oncologists may provide “primary palliative care” directly to their own patients. Bolstering training for the latter may help fulfill the unmet palliative care need in urologic oncology.
Professional societies have published clear recommendations regarding palliative care: the American Society of Clinical Oncology recommends early palliative care initiation for patients with advanced malignancies concurrently undergoing active treatment.4 The National Comprehensive Cancer Network (NCCN) guidelines include multiple indications for palliative care involvement, ranging from moderate to severe distress related to cancer diagnosis, patient concerns about disease course, and advanced cancers associated with high morbidity and mortality.5 Although overall oncologic guidelines are clear, the integration of urologic malignancies and palliative care has been less emphatic. The term “palliative care” was present in the 2019 NCCN guidelines for penile, kidney, and testicular cancers but absent from guidelines for bladder and prostate cancer.6
The American Urological Association (AUA) emphasized the role of palliative care in a recent white paper, providing a qualitative review of selected issues including optimizing outcomes in urologic surgery. The 2019 white paper highlighted the importance of palliative care following surgery with recommendations for delivering bad news, establishing goals of care, recognizing spiritual issues, and providing palliative and hospice care referrals.7 Similarly, this year the AUA Quality Improvement Summit acknowledged palliative care as a critical issue in patients with both advanced benign and malignant urologic diseases.8 This program educated participants on the current state of palliative care and helped define clinical scenarios when palliative care is needed. Furthermore, the program provided guidance on how to build a primary palliative care model within urology and perspectives on how best to increase the use of palliative care in urology.
Over 360,000 patients were diagnosed with urologic malignancy in the United States in 2020; in men, urologic malignancies account for 35% of all new cancer diagnoses and 18% of estimated deaths due to cancer.9 Patients with urologic malignancies experience a high symptom burden, especially in the end-of-life setting. Furthermore, each urologic malignancy carries a unique symptom burden, with diverse opportunities for palliation that may be delivered directly by urologists or through collaboration with multispecialty teams including palliative care specialists.
Patients with bladder cancer have high rates of morbidity and mortality, and repercussions on quality of life persist even after local disease treatment.10 Advanced bladder cancer can cause ureteral/bladder outlet obstructions associated with poor quality of life, as well as metastatic burden and intractable hematuria.11 A 2019 review found that only 3.6% of 7303 Medicare patients receiving a diagnosis of muscle-invasive bladder cancer received a referral to palliative care, with patients more likely to receive palliative care if they were younger, female, or treated with radical cystectomy.12
Men with prostate cancer, particularly those with advanced prostate cancer, can also benefit from incorporation of palliative care. Although prostate cancer is often minimally symptomatic at diagnosis, treatment with surgery or radiation can cause impotence and incontinence; later symptoms include bone pain and ureteral/bladder outlet obstruction.13 The Advanced Prostate Cancer (2020) AUA/American Society for Radiation Oncology/Society of Urologic Oncology guideline acknowledges the importance of multidisciplinary, holistic care, including palliative care, in the management of this complex patient population—particularly in the face of an ever-changing therapeutic landscape.14 Utilization of palliative care for patients with advanced prostate cancer has been shown to decrease both inpatient and intensive care admissions at the end of life; despite this, data also suggest that palliative care consultation for these patients is still too low.15,16
Supportive care, including palliative care, is acknowledged as an important part of the treatment of patients suffering from advanced and metastatic renal cell carcinoma, which may spread to the lungs, bone, or brain. Patients face invasive surgeries as well as a risk of paraneoplastic syndrome–associated cachexia, fatigue, pain, and anemia.17 As therapies are being rapidly developed and improved, patients often experience increased longevity while being confronted with chronic treatment-related adverse effects, significantly impacting their quality of life.
The impact of palliative care on patients with urologic malignancies is relatively less well studied than other malignancies. This may be in part due to a lack of utilization. Palliative interventions, defined in the National Cancer Database (NCDB) as treatment directed toward alleviation of symptoms without attempt to diagnose, stage, or treat malignancy, are remarkably infrequent for patients with advanced urologic malignancy. Retrospective review of 76,016 NCDB-registered patients showed that 12.5% of patients diagnosed with stage IV bladder cancer received palliative interventions compared with 14.7% of patients with stage IV prostate cancer and 19.9% of patients with stage IV kidney cancer.18 Only 17.6% of patients with metastatic penile cancer received noncurative symptom management according to an NCDB review of patients with advanced penile cancer from 2004 to 2015; this rate fell to 7.11% in patients with locally advanced disease.19
Outcomes of palliative care interventions in patients with urologic malignancy are even less readily available in the current literature. Results from the creation of an integrated urology-palliative care clinic showed increased clinician perception of quality of care as well as high rates of patient participation in hospice and advance planning discussions, as well as maintenance of health-related quality of life throughout the palliative process.20,21 From a broader surgical perspective, participants randomized to receive early palliative care during the immediate postoperative period after noncurative surgical intervention showed a nonsignificant reduction in symptom distress and pain intensity.22 The SCOPE trial (NCT03436290) is an ongoing randomized controlled trial evaluating physical and functional outcomes and quality of life of patients undergoing nonpalliative surgery randomized to receive either usual care or specialist palliative care consultation; the trial is set to complete enrollment in December 2021.23 When complete, to the authors’ knowledge, the SCOPE trial will be the first randomized trial to evaluate the role of palliative care for patients undergoing surgery with curative intent.
Barriers to palliative care exist at many levels, including patient misconceptions about the meaning of palliative care and limited access within health systems, but certainly physician factors play a role as well. Although a minority of clinicians may not recognize the true impact of advanced malignancies on patient quality of life, a lack of “buy-in” or awareness regarding the added value of comprehensive palliative care may also influence low utilization.12 Furthermore, some urologists may feel that a referral to palliative care represents “giving up” on their patient, or they may simply be uncomfortable introducing the topic. One option for increasing comfort with palliative care may be expanding the language we use to describe it—Sanford et al have compared utilizing the phrase “supportive care” instead of “palliative care” to the transition from “watchful waiting” to “active surveillance.”24 Indeed, Suwanabol et al characterized surgeon-specific determinants of palliative care and found that limited knowledge and comfort contribute to underuse.25 Etiology of this discomfort may stem from training patterns because structured palliative care curricula within surgical education has traditionally been lacking.26
It is encouraging to see the urologic community acknowledging the importance of palliative care for our patients, particularly among patients with urologic malignancies. Urology-specific guidelines, white papers, quality improvement summits, and emerging data will undoubtedly inform the future landscape of urologic oncology. Although no target threshold for ideal utilization of palliative care within urologic oncology exists, data strongly indicate the improved care value associated with timely and appropriate utilization. We agree with NCCN Palliative Care Guidelines recommending “all health care professionals and trainees participate in the education that results in the acquisition of palliative care knowledge, skills, and attitudes.”5 Urologists need not be palliative care experts but must continue to consider palliative care, collaborate with palliative care specialists, and, when appropriate, provide primary palliative care within our own practices as we strive to deliver high-quality, patient-centered, cost-effective care.
Launer is a urology resident and Scarpato is an associate professor of urology at Vanderbilt University Medical Center, Nashville, Tennessee.
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