Apr 26, 2016
By Daniel W. Bowles, MD
University of Colorado School of Medicine
All too often, our patients with terminal cancer and their providers are given a choice as though they are deciding their allegiance in the Star Wars universe, where one can follow the light or dark side of The Force. In the case of cancer, the sides of The Force are palliative/hospice care and anticancer therapy (chemotherapy, radiation therapy), and no one is quite certain which side is light and which is dark.
Several randomized trials indicate that early initiation of palliative/hospice care with active anticancer therapy, so called “concurrent care,” improves quality and, potentially, quantity of life for patients with advanced cancer.1-3 Yet, outside of the confines of research, most health care systems and payers have been slow to adopt this model.
The Veterans Health Administration (VA) has been at the forefront of offering concurrent hospice/palliative care and cancer therapy in the United States. Starting in 2009, the VA’s Comprehensive End-of-Life Care Initiative set forth to increase palliative care utilization within the VA, regardless of ongoing disease-modifying therapy. A recent evaluation of concurrent care within the VA by Mor et al. demonstrates a thirst for this model, as concurrent use of hospice increased by 50% (16.2% to 24.5%) from 2006 to 2012.4 While the absolute percentage of patients receiving concurrent care in this study remained low and the ultimate endpoints of this model are unknown (quality of life, survival, health care utilization), the study suggests that it is feasible to have a model that balances the “light and dark sides” in a large health care system. In the following article, Dr. D. Ross Camidge and Dr. Jeanie M. Youngwerth review the current state of simultaneous palliative/ hospice care and cancer therapy in the United States and beyond, and call for changes to improve the partnership between these two care models.
- Brumley R, Enguidanos S, Jamison P, et al. J Am Geriatr Soc. 2007;55:993-1000.
- Temel JS, Greer JA, Muzikansky A, et al. N Engl J Med. 2010;363:733-42.
- Bakitas MA, Tosteson TD, Li Z, et al. J Clin Oncol. 2015;33:1438-45.
- Mor V, Joyce NR, Coté DL, et al. Cancer. Epub 2015 Dec 15.
Palliative Care as a Partner, Not an Alternative, to Active Anticancer Care: Will the United States Catch Up With the Rest of the World?
By Jeanie M. Youngwerth, MD
University of Colorado Hospital Palliative Care Service
D. Ross Camidge, MD, PhD
University of Colorado Cancer Center
Americans are not dying well. In a recent analysis, the United States was ranked as only the ninth best country in the world in which to die, based on (among other things) policy frameworks for palliative care, levels of health care expenditure, training in specialist and generalist palliative care, financial subsidies, availability of opioids, and public awareness of palliative care.1 The aphorism “Nothing is certain except for death and taxes” is commonly attributed to Benjamin Franklin, one of America’s Founding Fathers, so one might think the United States would not be so backward when it comes to improving one of the inevitabilities of existence. Yet, in the 2015 Quality of Death Index, the United States trailed behind the Netherlands, Germany, Taiwan, Belgium, Ireland, New Zealand, and Australia, with the United Kingdom (UK) and its single payer National Health Service—a favorite topic for U.S. political football—topping the international rankings.
Despite the current gap between the United States and the UK in terms of the quality of care provided for those with terminal conditions, the concept of active symptom management as a distinct medical need, particularly for those with advanced cancer, started off very similarly in both countries. In 1963, Dr. Cicely Saunders, who had been working with the terminally ill in Britain for nearly 15 years at that time, presented a lecture at Yale University about the concept of holistic hospice care and the benefits of active symptom control for patients with cancer.2 In 1967, she created St Christopher’s, the first-ever true hospice, in the current sense, in a suburb of London. Florence Wald, then Dean of the Yale School of Nursing, pursued a sabbatical at St Christopher’s in 1968 to learn all she could about the new hospice movement before founding the first modern hospice in the United States in 1974.
In both countries, the medical specialty was built on the principle that terminally ill patients were removed from the mainstream of medical care and transitioned to a new place, a new medical team, in association with new rules of engagement. The priorities became symptom control, together with optimization of the patient’s psychological and spiritual well-being, rather than the prolonging of life at all costs. Funding was derived almost exclusively from charitable/philanthropic sources. However, in the UK, starting in the late 1970s, the National Health Service began to support hospices directly, and in 1989 the Royal College of Physicians recognized palliative care as a distinct medical specialty with a formal training program.3 In the United States, palliative care was not formally recognized as a distinct medical specialty by the American Board of Medical Specialties until 2006, nearly 2 decades after the UK.
Importantly, in the UK and in many other countries, after growing the specialty apart from main hospital services, palliative care was then slowly moved back into the mainstream of acute medical care. Staff trained in advanced symptom control began to work alongside their colleagues engaged in direct disease control. According to a 1996 report from the UK, hospitals with cancer units were required to offer at least three to five sessions (half days) of Consultant (“Attending”) level palliative medicine time plus one specialist nurse per week.4 In contrast, in the United States, the idea of “hospice” and its associated services as a destination decision has persisted, with seamless integration of palliative care into the full extent of standard oncology care remaining the exception rather than the rule.
The argument for close integration of palliative care with active disease control specialties can be made on many levels. The first palliative care battle fought and won in the United States was based on health economics. Palliative care services for hospital inpatients began to gain a foothold during the past decade through consistent evidence that these services provided cost savings by minimizing potentially inappropriate resource utilization while also decreasing readmission rates. Both of these factors are highly valued given the Diagnosis Related Groups reimbursement model (which sets forth a system of payment for acute care hospital inpatient stays based on prospectively set rates) and the Centers for Medicare and Medicaid Services (CMS) penalties to hospitals for 30-day readmissions.5,6 Currently, almost 90% of large hospitals (300 beds or more) in the U.S. have inpatient palliative care programs.7
However, the real prize for the United States is to establish a functional partnership in the outpatient setting, which would mean keeping patients well, rather than simply salvaging them after they are overwhelmed.8,9 In September 2014, an Institute of Medicine report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” identified the lack of palliative care services, especially in the outpatient setting, as a major gap in the care of people with serious illnesses.10 Unfortunately, for many years, for most health care insurers and providers, outpatient palliative care has been equated with hospice, and in the United States, enrollment in hospice means patients must relinquish their coverage of active disease treatments. Consequently, patients who may benefit from extra support and hospice-type symptom control delivered by staff trained in the same medical specialty tend not to utilize it until the last days or weeks of life. This “all or none” mentality of hospice has built a wall preventing most U.S. patients with advanced cancer and other serious illnesses from receiving the palliative support they need earlier in their treatment journey.
Remarkably, though, the United States may—at last—be catching up with the rest of the world.
In 2010, a landmark study published in The New England Journal of Medicine demonstrated that patients with advanced lung cancer did better in terms of both quality and quantity of life when they received palliative care integrated with standard anticancer care as opposed to receiving anticancer care alone.11 CMS, through the Medicare Care Choices Model, is now piloting a new option for Medicare beneficiaries (representing approximately 50 million Americans) to receive palliative care services from certain hospice providers while concurrently receiving anticancer therapies provided by their oncology providers.12 CMS has enrolled over 140 Medicare-certified hospices to participate over 5 years. To participate in the model, beneficiaries must fall into certain categories outlined by CMS, including the traditional CMS-defined prognosis of less than 6 months to live if the disease follows its natural course, together with a diagnosis of certain specific terminal illnesses (advanced cancer, chronic obstructive pulmonary disease, congestive heart failure, and HIV/AIDS).
Interestingly, the Department of Veterans Affairs (VA), which provides medical care to nearly 9 million Americans per year, has no policy limitations on providing “curative” therapies while a veteran is receiving hospice care. Consequently, in theory, the VA would permit life-prolonging measures, such as chemotherapy, to be administered while a patient simultaneously receives hospice services. Unfortunately, there is currently no standard for this more open-access hospice care in VA medical centers across the nation and barriers still exist relating to the coordination of VA hospice care with Medicare Hospice Benefit (as hospices are currently limited by their reimbursement of services from Medicare).
Beyond hoping for a positive outcome from the Medicare pilot, two other obvious hurdles remain to be cleared before U.S. patients can truly claim access to the best care in the world, from cradle to grave. The first is to recognize that occasional miraculous recoveries can occur in highly symptomatic patients with some of the newest anticancer treatments. Consequently, concurrent outpatient palliative care provided through hospice services may need to be highly flexible in terms of what can be provided for patients, and ideally the Medicare pilot should not evolve into some sort of prix-fixe menu version of hospice. Secondly, and perhaps most importantly, the reality of palliative care in the United States—which was built by our awkward financial systems rather than guided by a fit-for-purpose plan— needs to be discussed more openly. The irony that improvements in quantity of life, as reported in the New England Journal of Medicine paper, is the potential key driver behind the wider implementation of a movement traditionally focused on quality of life may reflect the country’s ongoing collective discomfort with death. However, it is only by pushing through that discomfort that we can remove the focus on “early versus late” hospice referrals as a relevant question and instead work on developing world-class cancer care as a true partnership between oncology and palliative care. This kind of policy would bring Ben Franklin’s quote up to speed for the new millennium: Death may be inevitable, but death without dignity does not have to be.
The opinions in this article are the author’s alone and do not constitute the official position of the United States Government or the Department of Veterans Affairs.
- The Economist: Intelligence Unit. economistinsights.com/healthcare/ analysis/quality-death-index-2015. Published October 6, 2015.
- National Hospice and Palliative Care Organization. nhpco.org/history-hospice-care. Updated July 23, 2015.
- Finlay I. J R Soc Med. 2001;94:437–41.
- Cancer Services in Wales. www.wales.nhs.uk/sites3/documents/322/Cameron_Volume_1.pdf. Published November 1996.
- May P, Normand C, Morrison RS. J Palliat Med. 2014;17:1054-63.
- O’Conner NR, Moyer ME, Behta M, et al. J Palliat Med. 2015;18:956-61.
- America’s Care of Serious Illness: State-By- State Report Card on Access to Palliative Care in Our Nation’s Hospitals. reportcard.capc.org. Published October 2015.
- Rabow M, Kvale E, Barbour L, et al. J Palliat Med. 2013;16:1540-49.
- Groh G, Vyhnalek B, Feddersen B, et al. J Palliat Med. 2013;16:848-56.
- Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. iom.nationalacademies.org/Reports/2014/Dying-In-America-Improving-Quality-and- Honoring-Individual-Preferences-Nearthe-End-of-Life.aspx. Published September 17, 2014.
- Temel JS, Greer JA, Muzikansky A, et al. N Engl J Med. 2010;363:733-42.
- Centers for Medicare and Medicaid Services. cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2015-Factsheets-items/2015-07-20.html. Published July 20, 2015.