Ethics Case
Integrating Palliative Care with Disease-Modifying Therapy
Virtual Mentor. December 2013, Volume 15, Number 12: 1017-1021.
Craig D. Blinderman, MD
Mr. James had been a heavy smoker most of his life. At 76, he had
moderately severe chronic obstructive pulmonary disease (COPD) and
coronary artery disease, and he had been feeling weak and coughing for
several months. When he began to cough up blood his son took him to the
emergency room, where a chest x-ray showed a speculated 3-centimeter
right upper lobe mass and enlarged mediastinal nodes. Mr. James was
admitted to the hospital. A positron emission tomography (PET) scan
showed both the mass and the nodes to be highly reactive. A needle
biopsy of the mass showed poorly differentiated adenocarcinoma
(non-small cell cancer) that was stage III-B.
Mr. James’s tumor did not have any of the mutations that would have
enabled him to be treated with targeted therapy, so he was offered
standard chemotherapy with cisplatin and paclitaxel.
After two rounds of
chemotherapy he began to feel slightly better. He had more energy and
was no longer coughing up blood. His three children and their families
had been a constant source of support; everyone tried to be optimistic,
hoping that a remission would last for many years. But within 2 months,
Mr. James began to notice back pain.
His first follow-up computed tomography (CT) scan revealed that,
despite the chemotherapy, the tumor mass in his right lung was larger
and the cancer had metastasized to his ribs and spine. The oncology
resident on Mr. James’s care team, Dr. George, had the responsibility of
delivering this news to Mr. James and his family. Dr. George was aware
of studies that had found associations between early referral to
palliative care services and improved quality of life.
So, when he met with Mr. James and his family, Dr. George explained
that the cancer had metastasized to Mr. James’s ribs and spine. He said
that, if chemotherapy were to continue, different agents would be needed
and that radiation was indicated for the areas of Mr. James’s spine
that showed evidence of cancer. Dr. George introduced palliative care by
saying, “I would also like you to talk to the staff in our palliative
care service.”
“Wait, what?” exclaimed Mr. James’s daughter. “We’ve barely started
fighting this thing and you want us to give up? You want us to just let
him die? To help him die faster?” Murmurs and exclamations from the
family followed. “No. No way. We’re not going to let them pull the plug,
Pops. We’re going to fight this, and we’re going to win.”
Dr. George was unsure of how to proceed. He believed the sooner
palliative care measures were started, the better off Mr. James would
be. At the same time he wanted to assure the family that he wasn’t
“giving up” on Mr. James.
Commentary
This case addresses the common—and challenging—issue of when and how
to bring up referral for palliative care services to patients with
serious illnesses, such as class-IV heart failure, end-stage chronic
obstructive pulmonary disease, or, in this case, advanced, incurable
lung cancer.
Palliative care attends to the physical, emotional, and spiritual
condition of patients and their families. Research has consistently
shown that cancer patients experience high symptom burden (e.g., pain,
lack of energy, difficulty sleeping) associated with poor quality of
life [1, 2] and have significant psychological distress [3, 4]. Families
of patients with cancer also experience a high degree of emotional and
psychological distress [5]. It would, therefore, seem appropriate that
care dedicated to the alleviation of patients’ symptoms be integrated
early in the disease course to decrease the level of suffering
experienced by patients and their families.
While multiple studies have shown the benefits of palliative care
services on symptom distress and quality of life, physicians may feel
that merely mentioning the words “palliative care” to patients and
families suggests that the patient’s life is nearing its end, that
palliative care hastens death, or that a referral to palliative care is a
sign that we are “giving up” and the best we can hope to do is simply
treat the patient’s pain and symptoms. In addition, some physicians may
believe that a referral to palliative care is only appropriate when
“there is nothing more that we can do.” This dichotomous construct—that
the patient can receive either disease-modifying therapy or
palliative care—is incorrect. Palliative care should be integrated with
disease-modifying therapy, regardless of prognosis or the success (or
failure) of disease-specific treatments.
The most important study to date demonstrating the benefits of
palliative care in advanced lung cancer patients [6] has recently led
the American Society of Clinical Oncology to update its guidelines—with a
provisional recommendation that patients with metastatic or advanced
cancer be offered concurrent palliative care and oncologic care starting
at initial diagnosis [7]. In this landmark study by Temel et al., 151
patients with stage-III-B or -IV adenocarcinoma of the lung were
randomly assigned to receive either standard oncologic treatment or
standard oncologic treatment and outpatient palliative care visits
initiated at the time of diagnosis. Patients who received
early-intervention palliative care experienced better quality of life
and lower rates of depression, and, despite receiving less “aggressive”
end-of-life care (32.7 percent versus 53.6 percent, p=0.01), survived
longer than those assigned to usual care (11.6 months versus 8.9 months,
p=0.02).
In addition, patients who received early palliative care were less
likely to be hospitalized (55 percent standard care arm, 38 percent
palliative care arm) and less likely to die in the hospital. They had
increased referral to hospice, increased length of stay in hospice, and
were less likely to receive chemotherapy close to death. Another study,
using a retrospective statistical analysis on selected cohorts from
large databases of Medicare beneficiaries with cancer and congestive
heart failure, showed a similar survival benefit for patients who
received hospice services. Patients enrolled in hospice had a mean
survival of 29 days longer than patients who were not (P=0.08) [8].
In my own clinical experience, palliative care services are most
beneficial when they are integrated early in the disease course. Indeed,
the coordination of care and collaborative relationships that result
from early involvement of palliative care services positively impact the
entire care team, as well as the patient and family.
So how can we improve referral to palliative care services while
patients are receiving disease-modifying therapy? One strategy is to
introduce palliative care services “as an extra layer of support” at the
time of initial diagnosis of advanced cancer or other life-limiting
condition (assuming an appropriate level of palliative care outpatient
services is in place). Another strategy is to identify a set of criteria
or “triggers” to alert the primary clinician that palliative care
services should be offered as a matter of best medical practice when the
patient is found to have a high symptom burden or difficulty coping
with the diagnosis, prognosis, or treatment plan.
A self-administered screening tool to assess unmet palliative care
needs and patient distress can be implemented at each visit. Appropriate
tools for this function are the Edmonton Symptom Assessment System
(ESAS), the Memorial Symptom Assessment Scale (MSAS), or a
disease-specific quality of life measurement tool (e.g., FACT-L for lung
cancer patients). A cutoff score suggesting significant distress or
poor quality of life (e.g., rating 5 or more symptoms as being moderate
to severe on the ESAS) can be identified prior to implementing such
measurement tools, and a score above the cutoff score could trigger a
referral to palliative care. The oncologist can then simply say the
following: “Given the number and severity of symptoms you are
experiencing, I would like to refer you to our palliative care service.
They have the expertise to focus on improving your symptoms and can help
you and your family best cope with all the stress of living with
advanced cancer while I continue to find ways to treat the tumor.”
Indeed, the Center to Advance Palliative Care (CAPC) has led the way
by providing a comprehensive definition of “palliative care” cognizant
of the phrase’s connotations. Palliative, after all, is related to the
Latin word palliare, “to cloak.” After testing it with focus
groups, CAPC has offered the following definition, which may help both
clinicians concerned about referring their patients to palliative care
and patients and families, who may misunderstand what palliative care is
and how it may be helpful to them:
Palliative Care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support.
It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment [9].
This definition, which accurately characterizes the role of
palliative care, is certainly far from “giving up,” and does not imply
that “there is nothing more we can do.” Indeed, it provides the kind of
medical attention patients and their families expect and deserve.
References
- Portenoy RK, Thaler HT, Kornblith AB, et al. Symptom prevalence, characteristics and distress in a cancer population. Qual Life Res. 1994;3(3):183-189.
- Chang VT, Hwang SS, Feuerman M, Kasimis BS. Symptom and quality of life surgery of medical oncology patients at a veterans affairs medical center. Cancer. 2000;88(5):1175-1183.
- Massie MJ, Holland JC. Depression and the cancer patient. J Clin Psychiatry. 1990;51 Suppl:12-19.
- Kaasa S, Malt U, Hagen S, Wist E, Moum T, Kvikstad A. Psychological distress in cancer patients with advanced disease. Radiother Oncol. 1993;27(3):193-197.
- Rhee YS, Yun YH, Park S. Depression in family caregivers of cancer patients: the feeling of burden as a predictor of depression. J Clin Oncology. 2008;26(36):5890-5895.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8);733-742.
- Smith, TJ Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30(8):880-887.
- Connor SR, Pyenson B, Fitch K, et al. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007;33(3):238-246.
- Center to Advance Palliative Care. Palliative care tools, training and technical assistance. http://www.capc.org. Accessed October 22, 2013.
Craig D. Blinderman, MD,
is director of the adult palliative medicine service and co-director of
the Center for Supportive Care and Clinical Ethics in the Department of
Medicine at Columbia University Medical Center in New York City.
Related in VM
The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.
© 2013 American Medical Association. All Rights Reserved.
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