Start Discussions About Palliative Care Upon Initial Metastatic Diagnosis

Michael Rabow, MD

Palliative care generally refers to patient and family-centered care that optimizes quality of life by anticipating, preventing, and alleviating suffering across the duration of a patient’s illness. Historically, palliative care referred to treatment available to patients at the end of life who were enrolled in hospice. More recently, palliative care has become available to seriously ill patients regardless of their prognosis. In addition, its meaning has evolved to encompass comprehensive care that may be provided along with disease-specific, life-prolonging treatment.

In the 10 years since the establishment of The National Consensus Project for Quality Palliative Care, a program established to create clinical practice guidelines that improve the quality of palliative care in the United States, the number of hospice programs has increased by 56.5% and non-hospice palliative care programs have increased by 148% in hospitals with over 50 beds.^1,2 In 2013, there were approximately 1.1 million deaths occurring under the care of one of over 5000 hospices.1 Palliative care services have expanded similarly across hospital and community care settings, including acute care units, emergency and critical care departments, outpatient settings, and within innovative community programs for patients with chronic conditions, such as neurological, cardiac, and pulmonary disease.³

There are many myths associated with palliative care including that it can only be provided in a hospital and that pain medications used in palliative care lead to addiction. Perhaps the biggest myth is that palliative care represents a resignation or a form of “giving up” by the healthcare provider and signals the beginning of end-of-life care to the patient. The reality is that high-quality palliative care is focused on pain management, control of symptoms, and helping patients reach their specific treatment goals.

The goal of palliative care is improved quality of life for patients and their loved ones. In the urologic oncology field, urologists can play an important role in successful comprehensive care by incorporating palliative care in their treatment regimens.

“Patients should be aware of palliative care options right from the beginning of their diagnosis and treatment,” said Michael Rabow, MD, the Hellen Diller Family Chair of Palliative Care at the University of California San Francisco, Hellen Diller Family Comprehensive Cancer Center. “Palliative care is not just end-of-life care, it is not just limited to patients who are dying.”

The key begins with the urologist, said Rabow, who is professor of clinical medicine and urology. By making palliative care a part of routine urologic care, and especially in cancer care, it can prevent or alleviate, as early as possible, the symptoms and side effects of treatment associated with the disease. The objective of palliative care is not to cure but it should be provided alongside curative treatment. Palliative care is sometimes referred to as comfort care, supportive care, and symptom management.

“As urologists, we need to change our habits so that we can honestly tell patients that part of providing comprehensive care for prostate or renal cancer involves palliative care,” said Rabow. A frank discussion about palliative care should be initiated when the patient’s course of treatment is discussed.

The American Society of Clinical Oncology has come out clearly stating that any patient with metastatic cancer or very high symptom burden should be receiving concurrent palliative care and oncologic care as standard therapy.

“We know that in medicine, once we have good evidence of what we should do, it takes 17 years for it to become standard practice,” said Jonathan Bergman, MD, an assistant professor of urology and family medicine at the Veterans Health Affairs of Greater Los Angeles and the David Geffen School of Medicine at UCLA. “That’s not acceptable. We need to find ways to implement interventions much faster and much more broadly, once we are sure that it’s the right thing do.”

Rabow suggests that one way to incorporate palliative care into the comprehensive care regimen might be to think about palliative care like nutrition or other supportive interventions. The urologist can position the benefits of palliative care and referral to a palliative care specialist in a similar way that nutrition is positioned: As the patient undergoes urologic treatments, the urologist can make concurrent recommendations about nutrition directly, or refer to a nutritionist.

When certain patients require the expertise of a specialist, referrals to palliative care specialists may be warranted. Referring to a palliative care specialist may be particularly difficult for urologists in rural areas. The first step is for the urologist to identify the palliative care resources in the community and start building relationships with palliative care specialists in the area, said Bergman. If possible, schedule patients who are sicker or who are less mobile to see the palliative care specialist during urologic visits, which is helpful and more convenient for patients.

Palliative Care Training for Every Clinician

“Every clinician needs to have some basic palliative care skills,” said Rabow. “We need to start training medical students, residents, fellows, and practicing physicians. They need to know how to start antidepressants, they need to know how to assess basic pain and start opioids for severe pain, and how to manage constipation. We need to start expecting more of the basics of comprehensive cancer care from urologists. Every patient with a urologic cancer should be getting some basic pain management,” and that care can be delivered by the urologist.

Jonathan Bergman, MD

By building palliative care into routine urologic care, the idea that palliative care is the default once there are no more treatment options available is avoided. “That’s the message to get out to urologists who may not have learned about modern palliative care during their clinical training.” It also avoids associating palliative care only with hospice care, which is end-of-life care. “Your patients, who are fully expected to survive their cancer, might do better with concurrent palliative care,” said Rabow. “Every patient should be getting some reasonable communication about prognosis and goals of care.”

Urologists should make sure to assess each patient and to understand what each patient’s treatment goals are, said Bergman. “Once the patient’s individual goals are established, urologists can see how best to help them achieve them.”

Tools and Resources

The Quality and Practice Standards Committee of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association Research Advisory Council have developed a portfolio of valid, clinically relevant, performance indicators, called Measuring What Matters (MWM), for internal measurement by hospice and palliative care programs.⁴ The portfolio serves as a common core set from which programs can select to help create standards for quality measurement of palliative care in the United States and allow for national benchmarking.

The goal of the program is to create an initial set of process and outcome indicators that apply regardless of diagnosis, organizational structure, or setting, although the MWM team recognized that such indicators may not always be appropriate or not yet exist or may not apply across populations and settings. Promoting high-quality hospice and palliative care indicators for accountability with the Centers for Medicare & Medicaid Services and other groups is also an important goal.

In addition, the National Quality Forum (NQF) Board of Directors approved 14 quality measures on palliative and end-of-life care. The measures address a wide range of care concerns, including pain management, psychosocial needs, care transitions, and experiences of care. NQF sought measures focused on care concerns such as managing pain, weight loss, and depression. It also sought measures that would directly assess—and improve over time—the experience of patients undergoing palliative and end-of- life care, as well as the experience of their families. In all, 22 measures were evaluated against NQF’s endorsement criteria by a panel of providers, measurement experts, and consumer representatives; 14 measures were endorsed.

“Palliative care teams have been shown to help improve patient care quality throughout the course of treatment,” said R. Sean Morrison, MD, director of the National Palliative Care Research Center in a statement. “This measure set will help support such efforts, such as enhanced treatment of pain and other symptoms, improved communication between providers and patients, fewer admissions to emergency departments, and increased patient satisfaction,” said Morrison, co-chair of the Palliative Care and End-of-Life Care Endorsement Maintenance Steering Committee.

Palliative care in urology seems to be in its infancy. “We need to figure out how to help the practicing urologist know the basics of palliative care,” said Rabow. One tool that he has used is the Edmonton System Assessment Score. “It’s a quick, effective, and validated tool to assess and understand the symptoms a patient is experiencing,” said Rabow. “We can use that to then focus on trying to address the patient’s symptoms.”

Bergman said the first step to addressing the greater use of palliative care begins with educating urologists about the benefits “and then to educate health systems about the fact that not only will their patients do better—their patients will live longer and likely at a lower cost.”

A core element is bringing the patient into the fold by educating him about palliative care. “We want patients to know that we’re actually being aggressive about treating all aspects of their disease, and that includes palliative care management. What we want as urologists is to help them the most we can.”

References

1. National Hospice and Palliative Care Organization. NHPCO facts and figures: hospice care in America. 2014. http://www.nhpco.org/sites/default/files/public/Statistics_Research/2014_Facts_Figures.pdf
2. Center to Advance Palliative Care. Analysis of U.S. hospital palliative care programs, 2012 snapshot. 2012. http://reportcard.capc.org/pdf/capc-growth-analysis-snapshot-2011.pdf.
3. Morrison RS, Meier DE, Augustin R, et al; Center to Advance Palliative Care. A state-by-state report card on access to palliative care in our nation’s hospitals. 2010. http://reportcard.capc.org/pdf/state-by-state-report-card.pdf.
4. Dy SM, Kiley KB, Ast K, et al. Measuring what matters: top-ranked quality indicators for hospice and palliative care from the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association. J Pain Symptom Manage. 2015;49:773-781.