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What's in a Name
Palliative Care Growing, But Still Misunderstood
by Karen Stassi
PUBLISHED: November/December 2011
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If you believe that the terms “palliative care” and
“hospice” are interchangeable, you are not alone.
That is, in fact, the most common and perhaps the most challenging misconception about
palliative care. However, while hospice provides palliative care for those nearing the end
of life, palliative care, itself, has applications far beyond the dying. In fact, the goal of
palliative care is to improve the quality of families’ and patients’ lives while they are still
undergoing curative or life-prolonging therapies. Hospice is reserved for those who have
chosen to cease any aggressive curative or life-prolonging treatment and to live their final
days as comfortably as possible.
Although palliative care can be practiced
at any time, referrals for palliative
care are generally made for
those with terminal or chronic illness
with heavy symptom burdens.
Eventually many of those patients will require or opt
for hospice care, but a palliative care referral does not
mean death is imminent. “It’s a common misperception
that when we call in palliative care it means the
patient is never going to leave the hospital,” said Susan
Nelson, MD, who practices palliative care in her
daily work as a geriatrician, but also as medical director
of PACE, FMOLHS Senior Services, and St. Joseph
Hospice. The confusion between the two has created
a little bit of a learning curve among both providers
and patients. Mary Raven, MD, a member of the Palliative
Care Team at Our Lady of the Lake Regional
Medical Center (OLOL) said it has taken a few years
for the culture to change there. “Our physicians know
us now and are comfortable with it. We’re busier now
and I think that’s a sign that we are being utilized earlier
in the process, which is where we can really have a
better impact,” she said.
Although the concept may be new to some, there is a
growing trend of offering palliative care in the hospital
setting. “I think that the majority of hospitals
in the U.S. with a minimum of 300 beds either have
these programs or are actively instituting these programs,”
said Charles W. Mason, MD, who will head
Baton Rouge General’s brand new palliative care program
as medical director of Supportive and Palliative
Care Services. The numbers bear him out. In its 2011
report, The Center to Advance Palliative Care (CAPC)
notes a 138 percent increase in the number
of hospitals providing palliative care
programs since 2000.
Despite the growing numbers, access to
palliative care remains an issue according
to CAPC’s 2011 report card, which gave
the nation a B-grade overall. Seven states
plus the District of Columbia received an
A. More than half of the fifty states received
a grade of B. Twelve states, including
Louisiana, received a C—a marked
improvement over the D our state received
in 2008 (Louisiana can now boast
palliative care programs in 43% of hospitals
with more than 50 beds and 67%
of larger hospitals with 300+ beds). Four
states received a D in the 2011 report and
only two states—Delaware and Mississippi—
got an F. Out of a total of 2,489
hospitals nationwide who participated in
this survey, said CAPC, about 1,500 provide
palliative care services, but there is
still only one palliative medicine physician
for every 1,200 persons living with
a serious or life-threatening illness. The
CAPC report states that policy initiatives
that address workforce, research, and patient
access could rapidly bring palliative
care to scale in the United States.
Some of the growth in palliative care,
both recent and anticipated, comes as
a result of our aging population. As the
baby boomers age they become more
prone to experience chronic or life-threatening
medical issues. “I think as the population
is aging they are developing more
and more diseases we can’t cure,” agreed
Nelson. “So we need to treat their symptoms
and make them as functional as
possible.” In addition, Mason noted that
there is growing recognition that the care
in America has gotten out of kilter with
the disease processes that we are treating.
“American medical care was developed
on a curative model where someone
who was otherwise healthy gets sick, they
undergo medical care and become completely
well again,” said Mason. “There are
just so many people out there now, with
the aging of the population, that are in
what we would consider a chronic illness
state. We know they may never get completely
well, but they may live for years
or decades with chronic illness.” Palliative
care programs are designed to offer
these types of patients a higher quality of
life. “Just as a cardiologist goes on rounds
through the hospital and focuses on the
patients’ hearts, the palliative care specialist
spends the day focused on relieving
many aspects of suffering,” said Mark
Kantrow, MD who has led OLOL’s palliative
care program since 2007.
“The focus of palliative care is to relieve
physical suffering, improve communication
with patients and their families,
and provide the most ethical and highest
quality of care,” said Kantrow. “The
process of matching the high technology
treatments available to patients’
needs can sometimes be challenging for
palliative care workers, and requires extensive
exploration of the patient’s values
and expectations.” Raven explained
that, “Because of technology and new
therapies, it becomes hard to know when
enough is enough—when the burdens of
those treatments outweigh the benefits.”
For that reason, palliative care teams are
truly interdisciplinary, addressing far
more than just the patient’s clinical condition.
Hospital-based teams generally
consist of at least one board-certified palliative
care physician, hospitalists, nurse
specialists, social workers, and pastoral
care. In addition, the referring doctor
and other staff members involved in the
patient’s care such as pharmacists, dieticians,
and respiratory therapists, can
be involved. Mason terms the concept,
“total pain”—that is, addressing more
than just the physical pain. Sometimes,
explained Chaplain Pat H. Davis, Baton
Rouge General’s Director of Pastoral Care
and a member of the palliative care team,
families feel guilty about ceasing certain
treatments or making certain decisions
even if that’s not what the patient would
have wanted. “But no one had that conversation,
no one brought it up. It’s supporting
that family so they don’t feel like
they are making these decisions on their
own. We are helping families accept the
reality of what’s taking place.”
A palliative care consult may be requested
by the patient, their family, staff
members or the treating physician. Often
a consult is triggered when a physician
is unsure that he can do anything
else for the patient and the palliative
care team is restricted to providing comfort
to the patient and their family in
their final hours. Ideally, however, the
consult should be triggered much further
upstream in the process, preferably
upon diagnosis of a chronic or terminal
condition. The team can then work with
the family through the tough discussions
and decisions and ensure that any
further treatment is in line with the patient’s
wishes. “When we first started,
because we are in an acute care hospital
setting, we started with what you would
call the low hanging fruit; the people already
within our walls that were dying
and were suffering,” said Alice Battista,
RN, Divisional Director, Mission Services.
“Now we are trying to move more upstream
where we try to get involved earlier
in the diagnosis rather than at the
end of life for patients with life limiting
or life-altering illnesses.” In the beginning,
because the team was called in for
patients nearing death, about 70 percent
died. Now, because the team is involved
sooner, about 70 percent are actually
improving enough to leave the hospital,
said Battista.
While a consult may be requested for
any patient with difficult to control
symptoms, some of the most common
triggers for palliative care include:
• End-stage heart failure
• Coronary artery disease
• COPD
• Cancer
• Stroke
• Dementia
• Chronic illness requiring frequent
hospitalization
• End-stage renal disease
Other triggers might be patients that
come into the hospital more than one
time in a 30-day period with the same
problem or symptoms, have spent five
or six days in the ICU with no improvement,
or cannot get their pain under
control, explained Davis. “A lot of these
illnesses and therapies have a large
symptom burden that is not always addressed
completely by usual care,” said
Mason. He explained that offering palliative
care in the hospital setting makes
sense because that is where it is easiest
to identify patients that are appropriate
for those sorts of interventions.
There are also non-medical triggers for
consults said Raven. Perhaps there is
conflict in the family over treatment options
or difficult decisions to make about
the right treatment course. There may
also be spiritual or financial concerns
that are taking a toll on the patient and/
or family members.
Palliative care has been around for years,
but it is only in the last decade that it has
been recognized as an official specialty.
The American Board of Hospice and Palliative
Medicine was formed in 1996 by
the pioneers in that field with the idea
that palliative care would ultimately become
a recognized specialty, said Mason,
who was certified by that board
several years ago. In 2006 several of
the boards of recognized specialties got
together and finally recognized palliative
medicine as a medical subspecialty.
Since 2008 those who have been practicing
palliative care have become certified
by passing an exam given by the
American Board of Internal Medicine.
In 2012, board certification will require
a one year fellowship similar to other
subspecialties.
CAPC and other organizations also offer
courses for palliative care staff, but
Battista points out that this work is also
something of a calling. “It has to start
within. The people who are in this field
are called in some way to care for this subset
of patients. Not everyone can do it.”
Raven admitted that, “A lot of what we do
is really sad, but it’s strangely satisfying
in that we are able to help do things for
people that others can’t and to help them
through the most difficult time they have
ever experienced.” Kantrow agreed, “This
specialty’s focus on supporting end-oflife
patients and their families appealed
to me. I enjoy helping those who are navigating
through the technological jungle
of modern medicine, being able to interact
with them, and helping them better
communicate with one another. Relieving
physical pain, psychological distress,
and confusion that patients and families
deal with is challenging, but also most
rewarding.”
A better understanding of what the
patient wants or expects out of his or
her treatment can avoid what Nelson
described as the bouncing ball of creating
new problems when addressing one
set of symptoms. It also, says Mason,
avoids the full court press standard of
care which may include treatment and
results the patient doesn’t really want.
“One of the goals is to match up the desires
and the needs of the patient with
the medical treatment,” said Davis. “Often
patients are treated, but don’t always
want what they are getting. Instead of
just getting a little we just throw everything
we have and see which one sticks.”
Davis explained that once the palliative
care team identifies what is important
to the patient, they can do away with all
the treatments that are not producing a
cure, but are taking a lot of time, energy,
and money and exhausting the patient.
The 21st century system of healthcare
can be difficult to navigate because it’s
not geared toward palliative care said
Raven. “It’s geared towards do everything
at all costs and avoid the moment
of death no matter what the patient has
to go through.” Families get caught up in
that and often don’t have someone to sit
down with them, explain the gaps in information,
and help them put a plan in
place, said Raven. “We’re trying to set
up their expectations and help them understand
how to make choices. We do a
lot of reframing of things like ‘hope’ and
‘I’m a fighter,’” she explained. “Maybe at
the beginning of an illness we are hopeful
for a cure and when that’s not possible,
we hope to live for a long time despite
a serious illness. When that’s not
possible, we hope for relief of suffering
and at the end to have a good death.”
There is considerable anecdotal, as well
as some recent scientific evidence, that
patients who receive palliative care
along with their other treatments fare
better than those who undergo medical
treatments alone. An oft-quoted study
published in The New England Journal of
Medicine last year explored the notion
that palliative care is appropriate and
effective for patients at the time of diagnosis
of a life-threatening illness. The
randomized controlled trial by Jennifer
S. Temel, MD et al. compared patients
with non-metastatic non-small cell lung
cancer receiving standard oncology treatment
with those who received the same
treatment along with an initial consultation
and monthly meetings with a palliative
care clinician. The patients receiving
palliative care experienced better quality
of life, lower rates of depression, and also
lived longer despite opting for less aggressive
end-of-life care.
In addition to improved quality of life,
patients who receive palliative care may
also experience shorter hospital stays
and return to living their lives more
fully. Part of that comes as a result of
the treatment being better tailored to
the patient’s wishes. “It’s not the goal to
get people to limit care; it’s to help them
understand and let them make the decisions
that are important for them,”
said Mason. “I see people all the time…
they actually get better, they get up out
of bed, they go home, they feel better,
they enjoy their life.” Zachary Smith,
director of the Radiation Oncology/Tumor
Registry at the Pennington Cancer
Center, said the trend providers are seeing
is that with patients deciding what
treatment they want and where they
want to be and with symptoms being
brought under control sooner, they are
actually going home sooner. “Lengthening
the hospital stay really isn’t good
for them or the hospital,” said Smith.
Davis explained that palliative care is a
journey with the patient and the family
as they go through treatment and come
to appreciate the burdens of the treatment
and weigh those against the benefits.
“When they want to focus more
on quality of life than quantity of life,
then we can help them decide what the
right care is for them, the right setting
for that care, and their goals for that
care. We look at the patient’s values and
try to align the care with those values.”
Without palliative care, said Davis, the
full court press of aggressive treatment
designed to delay death continues.
Area hospitals have been growing their
palliative care programs in the past few
years and hospice programs have been
providing palliative care for a while now,
but palliative care may also be provided
in the outpatient or home setting. Physicians
who care for geriatric patients,
many of whom have chronic conditions,
may provide some palliative services
such as symptom control and care
planning as part of their routine care.
Also, in recognition that some terminally
ill patients are not ready for hospice,
some hospice providers, such as St.
Joseph’s Hospice have partnered with
home health providers to provide palliative
care in patients’ homes to those who
wish to continue with dialysis, chemotherapy,
radiation or other life-prolonging
therapies. Similar to the hospital
programs, St. Joseph’s AIM (advanced
illness management) Palliative Home
Health, a partnership with STAT Home
Health, provides patients with the services
of board-certified palliative care
physicians, nurses, social workers, and
chaplains, most of whom are also part
of the hospice care team. When the time
comes for hospice those patients can
transition with the same care providers.
“If you get too sick to be at home, that’s
when acutely you need to be managed
in a hospital,” said Smith. “But if certain
symptoms can be taken care of medically
and at home, that’s really best for
the patient. That’s an environment they
are most comfortable in and that’s really
what they want more times than
not.” Like Our Lady of the Lake, Baton
Rouge General hopes to eventually accommodate
patients’ wishes by offering
palliative care services in an outpatient
setting, but the inpatient consult is the logical place to begin
building those programs. “In an ideal world we would have an
outpatient palliative care clinic where we could see patients,
work on their symptoms, have the cost of that care covered
by insurance and then, when the time was right, bridge them
over to hospice,” said Raven. “We’re just not set up for that
kind of care right now, but these kinds of programs do exist in
places like New England where palliative care has been around
a lot longer.”
“Ultimately the goal is to change the culture,” said Mason.
“When I initially started in Monroe, oncologists didn’t understand
and didn’t see the need for a program like this. Now they
are all onboard and think it’s great. When you change the culture
you change the way people practice in their offices also.
You can’t just have a few palliative care specialists out in offices
practicing. You have to get everyone thinking about this.
It has to be part of what people do in their every day practice.”
Nelson acknowledges that there are some patients for whom
the goal of care is to live forever, no matter how many tests,
surgeries, or procedures, and others who would rather skip the
life-prolonging benefits of chemo so they can feel good enough
to pursue some personal goals. “Sometimes the problem is nobody
asks the patient what they want,” said Nelson.
Sources: America’s Care Of Serious Illness: A State-by-State Report Card on Access
to Palliative Care in Our Nation’s Hospitals, Center to Advance Palliative Care
(CAPC) and the National Palliative Care Research Center (NPCRC), 2011; Center
to Advance Palliative Care, www.capc.org; Early Palliative Care for Patients with
Metastatic Non–Small-Cell Lung Cancer, Jennifer S. Temel, MD, Joseph A. Greer,
PhD, Alona Muzikansky, MA, Emily R. Gallagher, RN, Sonal Admane, MB, BS, MPH,
Vicki A. Jackson, MD, MPH, Constance M. Dahlin, APN, Craig D. Blinderman, MD,
Juliet Jacobsen, MD, William F. Pirl, MD, MPH, J. Andrew Billings, MD, and Thomas
J. Lynch, MD, N Engl J Med 2010; 363:733-742, August 19, 2010, http://www.nejm.
org/doi/full/10.1056/NEJMoa1000678; AIM Palliative Home Health, http://www.
aimhome.org/; St. Joseph Hospice, www.stjosephhospice.com.
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