Opinion

VIEWPOINT

Arif H. Kamal, MD,

MBA, MHS
Duke Cancer Institute,
Duke University
Medical Center,
Durham, North
Carolina.
Thomas W. LeBlanc,
MD, MA
Duke Cancer Institute,
Duke University
Medical Center,
Durham, North
Carolina.
Diane E. Meier, MD
Center to Advance
Palliative Care,
New York, New York.

Corresponding
Author: Arif Kamal,
MD, MBA, MHS, Duke
Cancer Institute, Duke
University Medical
Center, PO Box 2715,
Durham, NC 27705
(arif.kamal@duke.edu).

Better Palliative Care for All

Improving the Lived Experience With Cancer
the overall patient experience. Patients often can avoid
invasive, debilitating procedures such as radical mastectomy in favor of options that improve cancer outcomes while also respecting the importance of cosmesis and emotional well-being. Patients and advocates
share a consistent message regarding the importance of
long-term morbidities, financial struggles, and poor
symptom management: The patient experience matters. Concurrent with a focus on cancer cures must be
a bold and determined mission to improve the cancer
care experience for all, regardless of cancer treatment
outcomes. This could be achieved by strategic investment in the clinical practice and science of the patient
experience through palliative care.
Palliative care is specialized care for patients with serious illness. Although palliative care has had an end-oflife connotation to many and denotes a service, clinic,
or person to some, it is a philosophy of care aimed at improving the patient and family experience and quality of
life, regardless of treatment outcomes. Palliative care recognizes the patient and family as a unit, serves to maximize both quality and quantity of life, and
understands that physical, social, finanAs billions of dollars are invested in
cial, emotional, and spiritual distress not
only influence the experience of having
seeking the cure for cancer, attention to
cancer but also influence cancer treatthe quality of life of people living with
ment outcomes.
Clinicians deliver palliative care in
cancer and the effect of cancer treatment
2 major ways: primary and secondary/
are at least as important to address and
specialtylevel service.4 Primary palliafar more achievable in the near term.
tive care is the basic, foundational attention to quality of needs, including
symptom
assessment
and management, sharing inforpalliative care as part of their treatment but also points
3
mation
about
what
to
expect, communication about
to prolonged survival. This counterintuitive finding
patient
priorities,
and
providing
accessible continuity
suggests that relief from the pain, symptoms, and
of
care
over
time
and
across
care
settings. This type of
stresses of a serious illness and the prevention of the
crises that result in avoidable hospitalizations actually care is generally delivered by oncologists concurrently
helps patients with cancer complete their course of when cancer-directed therapies are initiated.
treatment and live longer. Several randomized clinical Secondary/specialtylevel services consist of palliative
trials have demonstrated significant improvements in care specialists with additional training who work
the patient or family experience (quality of life, depres- along with treating physicians to provide additional
sion, survival)3 with early palliative care compared support. Both services are important for patients who
with usual-oncology-care alone. Additional emphasis are living with cancer, managing the effects of a previon and attention to concurrent palliative care yield ous cancer and its treatment, or nearing the end of life.
clinically important returns. If palliative care were a The oncology team is the principle source of primary
cancer drug, it could possibly be equivalent to a billion- palliative care for the majority of patients with cancer.
When needs are more complex or time consuming,
dollar blockbuster.
Palliative care provided concurrently with routine oncologists engage colleagues with specialist palliative
oncologic care has also proven beneficial in other ways. care expertise. This manage first, refer second pracChemotherapies once limited in administration by nau- tice reflects the ethos of the oncology professionthe
sea and life-threatening infections are now deployed notion that this is our jobwhile also reflecting a
regularly due to advances in supportive care, ulti- practical humilityIts hard to be everything to everymately improving treatment tolerance, adherence, and one all the time.

The recent announcement by Vice President Joseph

Biden of a cancer cures moonshot has brought renewed attention to the goals of 21st-century cancer care.
Not since the late President Nixons declaration of War
on Cancer has so much focus been directed toward the
experiences of the 1.66 million persons diagnosed with
cancer annually in the United States.1 The framing of this
initiative is focused on accelerating scientific progress
against cancer as a disease, with little attention to equity2
or to the experience of those living with cancer and its
consequences. As billions of dollars are invested in seeking the cure for cancer, attention to the quality of life of
people living with cancer and the effect of cancer treatment are at least as important to address and far more
achievable in the near term.
The oncology community is one of numerous specialties focused on improving the lived experience of
illness for patients and their loved ones. A growing
body of evidence not only points to better quality of
life and function for patients with cancer receiving
concurrent cancer-directed therapies and consultative

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Opinion Viewpoint

Does increased provision of palliative care run counter to the

focus on curing cancer? Does a concurrent movement for palliative
care for all distract from this new charge? No. Rather these
2 components of person-centered oncology carefocus on cure
simultaneous to a focus on the experienceare mutually interdependent. There are 2 central tenets to the cancer experience:
(1) A person who is cured of cancer must first live with cancer;
and (2) Living with cancer portends an experience for patients and
their loved ones that having cancer is life-altering, no matter what
the outcome. Supporting patients and families through this unique
experience requires careful attention, honed skills, and a recognition that sometimes an extra layer of support (the sine qua non of
specialty palliative care) provided alongside the oncology team is
valuable, and necessary. Rather than an either-or approach,
patients deserve both focused attention to the science of reducing
the burden of cancer, along with vigorous interest in improving the
cancer experience through palliative care. This strategy uses an
and-with approach that emphasizes the regular integration of palliative care and development of its science and workforce.
Cancer can be frightening, overwhelming, and exhausting,
and cancer care can be disjointed, distracted, and sometimes
toxic. Better delivery of palliative care, both by oncologists and
palliative care specialists, would change this. Success, however,
will require 4 strategic investments. First, access to specialist-level
palliative care for all patients with cancer must be increased. A
plan to address the estimated shortage of 10 000 palliative care
physicians must include pathways for training additional health
care professionals,5 as proposed by the Palliative Care and Hospice Education and Training Act8 legislation. Second, open access
ARTICLE INFORMATION
Published Online: May 31, 2016.
doi:10.1001/jama.2016.6491.
Conflict of Interest Disclosures: All the authors
have completed and submitted the ICMJE Form for
Disclosure of Potential Conflicts of Interest and
none were reported.
REFERENCES
1. Siegel RL, Miller KD, Jemal A. Cancer statistics,
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2. Horwitz RI. Equity in cancer care and outcomes
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JAMA. 2016;315(12):1231-1232.

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models that allow simultaneous palliative care with cancerdirected treatments should be explored. For example, the Centers
for Medicare & Medicaid Services Care Choices Model allows
patients to opt for hospicelike palliative care services while receiving care from oncologists. Eliminating the either-or model for highquality palliative care concurrent to cancer therapies should be a
priority. Eliminating the either-or model for high-quality palliative
care concurrent to cancer therapies should be a priority; patients
deserve both at all times. Third, oncology professionals should
receive training in the core knowledge and skills of palliative care.
Recent evidence6 shows that one-fourth of oncology trainees are
not taught the fundamental components of primary palliative care
(eg, conducting a family meeting, symptom management, how
and when to refer to hospice). Educational efforts should be
strengthened starting earlier in medical education and focusing
both on knowledge (eg, effective opioid titration) and skills
(eg, determining goals for care). Fourth, funding for palliative
care research and discovery should increase. Less than 1% of all
funded grants by the major National Institutes of Health institutes
were awarded to palliative care research.7 Improving the cancer
experience requires commitment from funders to drive the engine
of discovery.
While marching boldly toward a future that emphasizes prevention and improved treatment to minimize the morbidity and
mortality from cancer for current and future generations, it is
important to remember that 2 essential, complementary goals
exist: improving the experience for all, while curing cancer for an
unprecedented many. Cure without compassion is an exercise in
killing malignant cells, while failing to support the living person.

3. Davis MP, Temel JS, Balboni T, Glare P.

A review of the trials which examine early
integration of outpatient and home palliative care
for patients with serious illnesses. Ann Palliat Med.
2015;4(3):99-121.
4. von Gunten CF. Secondary and tertiary
palliative care in US hospitals. JAMA. 2002;287(7):
875-881.
5. Kamal AH, Maguire JM, Meier DE. Evolving the
palliative care workforce to provide responsive,
serious illness care. Ann Intern Med. 2015;163(8):
637-638.

6. Thomas RA, Curley B, Wen S, Zhang J, Abraham

J, Moss AH. Palliative care training during
fellowship: a national survey of US hematology and
oncology fellows. J Palliat Med. 2015;18(9):747-751.
7. Gelfman LP, Du Q, Morrison RS. An update: NIH
research funding for palliative medicine 2006 to
2010. J Palliat Med. 2013;16(2):125-129.
8. Palliative Care and Hospice Education and
Training Act. HR 3119, 114th Cong, 1st Sess (2015).

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