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ONLINE EXCLUSIVE
Patient and Surgeon Decision Making Regarding
Surgery for Advanced Cancer
Betty R. Ferrell, PhD, FAAN, David Z.J. Chu, MD, Lawrence Wagman, MD,
Gloria Juarez, RN, PhD, Tami Borneman, RN, MSN, Carey Cullinane, MD,
and Laurence E. McCahill, MD
Key Points . . .
Purpose/Objectives: To describe a program of research related to
outcomes of palliative surgery and focus on one phase of this research
involving decision making by patients and surgeons considering surgery
Surgery is an important aspect of comprehensive cancer care,
for advanced disease.
potentially enhancing quality of life in advanced disease.
Design: Descriptive.
Surgeons and patients face difficult decisions in determining
Sample: 10 patients undergoing surgery and 3 oncology surgeons.
treatment options to balance risks and benefits of care.
Methods: Qualitative interviews were conducted with patients and
Patients with advanced cancer need expert nursing care to sup-
their surgeons pre- and postoperatively. Transcripts were content ana-
port decision making and outcomes related to palliative surgery.
lyzed to identify major themes in patient and surgeon interviews based
on study questions.
Main Research Variables: Decision making, palliative surgery, quality
Literature Review
of life.
Findings: The study findings highlight the issues of greatest concern to
patients and surgeons considering palliative surgery. This phase was an
Researchers have expressed the difficulty that comes with
important component of the overall program of palliative surgery research.
communication among patients, families, and physicians dur-
Conclusions: Comprehensive care for patients with advanced cancer
ing the transition from curative to palliative care (Bruera, 2000;
seeks to achieve a balance of providing aggressive care, ensuring optimum
Bruera, Sweeney, Calder, Palmer, & Benisch-Tolley, 2001;
symptom management, and maintaining a focus on comfort. Further study
Jewell, 1994; Karlawish, Quill, & Meier, 1999; Petrasch et al.,
of palliative surgery as an aspect of interdisciplinary care is warranted.
1998). This becomes increasingly challenging when the inter-
Implications for Nursing: Patients undergoing surgery for advanced
vention considered is operative. Several authors have investi-
disease require expert nursing care to address quality-of-life concerns.
gated preferences of patients with cancer in the decision-mak-
Further research is needed in this area.
ing process (Bottorff et al., 1998; Rothenbacher, Lutz, &
Porzsolt, 1997). Rothenbacher et al. evaluated the extent to
which patients hospitalized with advanced cancer who were
reatment decisions in the case of incurable disease can
T
receiving palliative treatment wanted to be involved in the de-
be difficult for patients and the physicians who treat
cision-making process. The vast majority of patients preferred
them. Basic tenets of palliative care deem that a frank
a collaborative role and wanted to decide with their physicians,
discussion takes place regarding the risks and benefits of any
treatment and that these options take into consideration each
Betty R. Ferrell, PhD, FAAN, is a research scientist in the Depart-
patient's wishes. Perhaps in no aspect of palliative care is this
ment of Nursing Research and Education, David Z.J. Chu, MD, is a
more evident than for patients being considered for major pal-
surgeon in the Department of General Oncologic Surgery, Lawrence
liative surgery, where risks often are greater than those faced
Wagman, MD, is chair of the Department of General Oncologic
from chemotherapy or radiation. Physicians may find difficulty
Surgery, and Gloria Juarez, RN, PhD, is an assistant research sci-
in maintaining hope while effectively redirecting treatment
entist in the Department of Nursing Research and Education, all at
goals from cure to symptom relief or quality of life (QOL).
the City of Hope National Medical Center in Duarte, CA; Tami
Borneman, RN, MSN, is a research specialist and palliative care
Better communication may translate into improved patient sat-
nurse educator in the Department of Palliative Care at Georgetown
isfaction, but how this is to take place and what patients want
University Medical Center's Lombardi Cancer Center in Washing-
as part of the discussion are sources of considerable debate.
ton, DC; Carey Cullinane, MD, is an assistant surgeon in the De-
This article aims to contribute to an evolving understanding
partment of General Oncologic Surgery at the City of Hope National
of decision-making and communication to improve patient
Medical Center; and Laurence E. McCahill, MD, is an assistant
care at the end of life. It describes a program of research in the
professor for the Department of Surgery at the University of Vermont
area of palliative surgery and reports findings from one phase
in Burlington. (Submitted February 2003. Accepted for publication
of that research. The purpose of this phase was to explore
February 20, 2003.)
decision making by patients and surgeons considering surgery
Digital Object Identifier: 10.1188/03.ONF.E106-E114
for advanced disease.
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E106
nant disease. To explore those issues in depth, qualitative in-
whereas some patients preferred to make treatment decisions
terviews were conducted. This method of data collection al-
alone. Less than 20% wanted to leave the decision making en-
lowed patients and surgeons the freedom to express their per-
tirely to the physicians. However, other studies suggested that
spectives about decision making in the context of the social,
patients faced with a life-threatening disease do not necessar-
cultural, and illness views that affect their decision-making
ily want to make treatment decisions and would prefer a more
process. This article reviews the expectations and methods of
passive role (Stiggelbout & Kiebert, 1997).
decision making of patients and their surgeons before and fol-
Braddock, Edwards, Hasenberg, Laidley, and Levinson
lowing a surgical intervention for advanced disease.
(1999) documented the process of informed decision making
between patients and their physicians, noting that only 9% of
Methods
decisions met the definition of informed decision making and
fewer than 10% included a discussion about treatment alter-
Conceptual Model and Program of Research
natives, risks, and uncertainties. Gattellari, Voigt, Butow, and
Tattersal (2002) reported the extent to which patients with in-
Figure 1 presents the conceptual model for decision making
curable cancer were able to make informed decisions about
in palliative surgery that has evolved across the program of
their treatment and explored the effect of information disclo-
research described in Table 1. As depicted, decisions are in-
sure on patient well-being and satisfaction with their medical
fluenced by patients, family, and the healthcare team. The
care. Although most patients were told about the aim of treat-
process of making decisions involves identifying goals, rec-
ment, informed that their disease was incurable, and made
ognizing values, acknowledging alternatives, and weighing
aware of the uncertainty of whether treatment would achieve
risks and burdens. Treatment choices are made that result in
a benefit, few patients were explicitly offered a choice in their
patient outcomes that affect dimensions of QOL as well as
treatment and given time in the consultation to clarify their un-
additional outcomes. This study contributed to the conceptual
derstanding.
model by refining patient and surgeon factors that influence
Additional data suggest that patients with metastatic disease
decisions. The investigators will apply the model to future
frequently may overestimate their survival time and that those
phases of this research program to include evaluation of the
who do so are more likely to favor life-extending treatment,
model in a patient intervention.
perhaps without adequate understanding of the limitations of
Sample
current available treatments to cure and without full knowl-
edge of potential treatment-related side effects on QOL
(Weeks et al., 1998). Reliable prognostic assessment assumes
Patients were selected from a comprehensive cancer center if
perhaps even greater importance in palliative care when pa-
they met criteria of being aged 18 or older and were scheduled
tients may consider treatment-related morbidity if the likeli-
for surgery for advanced cancer. Advanced disease was defined
hood of cure is remote given current treatment options. A
as distant metastases, recurrent solid tumors, or initial presen-
number of studies have suggested that survival predictions of
tation of suspected stage III or greater malignancy of particu-
physicians are only moderately associated with survival
larly poor prognosis (e.g., esophageal, pancreatic, or gastric
(Maltoni et al., 1994).
cancers). Patients were required to have a major operation,
Clinicians' primary obligation is to provide professional
which was defined as involving general anesthesia and requir-
expertise in diagnosis and treatment of disease. Consequences
ing an inpatient stay. Ten patients and their respective surgeons
of treatment, such as patient discomfort, associated treatment-
were interviewed. This included three surgeons across the 10
related morbidity, or even mortality, may be viewed as accept-
patients. Interviews were conducted preoperatively--generally
able risks when the goal of the treatment or surgery is cure. In
one to three days before surgery--and approximately two to
the setting of a palliative intervention, however, the value of
four weeks postoperatively. Interviews were tape-recorded, and
treatment outcomes relative to treatment risks is less well
the transcripts were prepared verbatim. A total of 556 single-
understood (Miner, Jaques, Tavaf-Motamen, & Shriver,
spaced transcript pages resulted from the interviews. Key top-
1999). Data regarding interventions for specific advanced
ics of the patient interviews are captured in Figure 2, and the
malignant conditions are limited, and, thus, clinicians' knowl-
topics of the surgeon interviews are identified in Figure 3.
edge base regarding outcomes may be limited.
Analysis
Patients who are referred to surgeons after courses of chemo-
therapy or radiation have failed to contain their disease may feel
The interview guides were developed by the research team,
desperate after having been informed that surgery is all that is
pilot tested, and refined based on pilot interviews. Patient inter-
left. Patients may not participate in active discussions about
views were conducted by a research nurse, and physician inter-
their options for care of symptoms when they anxiously hope
views were conducted by a physician. Mock pilot interviews
and anticipate an offer of any anticancer treatment. In turn, sur-
were conducted, tape-recorded, and reviewed by the team to
geons may offer treatments to preserve patient hope. The fact
provide feedback for interviewing. A research team comprised
that patients and physicians often avoid discussing prognosis in
of two surgical oncologists and three nurses with extensive ex-
the case of incurable disease is well known, perhaps because
perience in qualitative methods analyzed the interviews, and the
frank palliative care discussions may uncover problems with-
principal investigator listened to all tape-recorded interviews
out solutions or are perceived as destroying any remaining hope
and reviewed all transcripts. Members of the entire research
for cure (Lo, Quill, & Tulsky, 1999).
team read the transcripts and discussed their interpretations.
The purpose of the current study was to allow for in-depth
Transcripts were analyzed using content analysis methods as de-
exploration and increased understanding of the complex pro-
scribed by Krippendorff (1980). Meaningful statements were
cess of decision making between surgeons and patients being
bracketed from the transcripts and then assigned to tables using
evaluated for major surgery for treatment of advanced malig-
a "cut-and-paste" approach in which key themes and subthemes
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E107
Process
Impact on Quality of Life (QOL)
Influencing
Treatment
Factors
Choices
Patient
Physical Well-Being
Psychological
Identifying goals
Palliative surgery
and Symptoms
Well-Being
Recognizing values
Chemotherapy
Functional ability
Anxiety
Acknowledging alternatives
Radiation
Strength and fatigue
Depression
Weighing risk versus benefit
Combination treatments
Family
Sleep and rest
Enjoyment and leisure
Other treatments
Nausea
Pain distress
No invasive treatment
Appetite
Happiness
Constipation
Fear
Pain
Cognition and attention
Healthcare Team
·
Difficulty of the palliative pro-
cedure
QOL
·
Duration of hospitalization
required
·
Required recovery time at
Social Well-Being
Spiritual Well-Being
home
Financial burden
Hope
·
Percent chance of achieving
Caregiver burden
Suffering
the palliative goal in the short
Roles and relationships
Meaning of pain
term
Affection and sexual
Religiosity
·
Anticipated durability of the
function
Transcendence
intervention
Appearance
·
Anticipated malignant dis-
ease progression
Additional Outcomes
Low morbidity
Durable palliation
Patient satisfaction with treatment
Survival
Family caregiver satisfaction, QOL, and burden
Health system outcomes (cost)
Figure 1. Clinical Decision Making in Palliative Surgery
were identified. Tables were reviewed and discussed by the
well-being, patients described anxiety and coping mechanisms
research team during several meetings. The tables underwent
predominantly as they related to anticipating a future surgery.
numerous revisions based on team discussions.
In the area of social well-being, patients described changes in
their lives as a result of advancing disease, including strain on
Results
personal relationships and their employment status. Patients
generally believed that, through symptom relief, surgery could
Demographics
remedy some of the social strain brought on by disease. The so-
Table 2 includes demographics of the patients and surgeons
cial impact of symptoms was a clear secondary motivation for
interviewed for the study. The mean age of the patients was
surgery beyond the physical impact. In the area of spiritual
57, and frequently represented diagnoses were esophageal and
well-being, patients commonly acknowledged their faith as an
colon cancer. Surgeons interviewed had a mean age of 48
integral part of coping, especially to combat surgery-related
years and had been in oncology practice an average of 15
anxiety, and they indicated an increased reliance on faith as
years. Surgeons estimated their hours of palliative care edu-
their disease progressed. A need to maintain hope in the face of
cation to be minimal.
advancing disease by continuing to receive treatment emerged
as another important motivation for surgery.
Patient Interviews
The interviews also directly explored patients' decision-
In exploring the decision-making process, the investigators
making processes regarding surgery for their advanced dis-
first sought to describe patients' QOL to better understand the
eases (see Figure 5). Patients generally described the decision
life circumstances that could contribute to patient decisions.
to have surgery as not a difficult one but rather as the only op-
Figure 4 lists patients' descriptions of their QOL considerations
tion at that point in their care, having exhausted other treatments
such as chemotherapy and radiation. In general, patients were
before surgery in terms of physical, psychological, social, and
spiritual well-being. In the area of physical well-being, patients
eager to pursue surgery rather than delay treatment. Consistent
described symptoms, including pain, nausea, fatigue, and mul-
with the literature, although patients articulated their under-
tiple symptoms occurring together. The physical distress of
standing of having advanced disease and often described how
symptoms associated with disease was the primary motivation
their surgeons had presented the operation as palliative in in-
for seeking surgical treatment. In the area of psychological
tent, most patients still hoped for the possibility of prolonged
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E108
Table 1. Description of Program of Research of Palliative Surgery
Key Findings
Phase
Study
Design
Palliative surgeries comprised 240 (13%) of 1,915 surgical procedures (170
I
Surgical Palliation at a Cancer
Retrospective review of surgical
major and 70 minor). Neurosurgical (46%), orthopedic (31%), and thoracic
Center (Krouse et al., 2001)
cases (N = 1,915) during a one-
(22%) surgical procedures frequently were palliative. The most common primary
year period with a one-year survival
diagnoses were lung, colorectal, breast, and prostate cancers. Mean length of
follow-up. This descriptive study
hospital stay was 12.4 days (range = 0­99 days). Mortality for surgical proce-
began exploration of the extent of
dures classified as major was 22% and 10% for those classified as minor. The
palliative surgery to identify patient
investigators concluded that significant numbers of palliative procedures caus-
outcomes.
ing mortality were high; however, a significant number of patients had short
hospital stays and low morbidity. Palliative surgery should remain an important
part of end-of-life care. Patients and their families must be aware of the high risks
and understand the clear objectives of these procedures.
Prospective design allowed expansion of outcomes to include quality of life
II
Advancing the Evaluation of Pal-
Prospective review of palliative sur-
(QOL) and to explore the involvement of family caregivers.
liative Surgery for Cancer Pa-
geons (N = 50). The interview guide
tients (Krouse et al., 2002)
was pilot tested for use with pa-
tients, family caregivers, and sur-
geons to explore decision making
and goals.
Surgeons estimated that 21% of their cancer surgeries were palliative in nature.
III
Indications and Use of Pallia-
A survey (110 items) was mailed to
Forty-three percent of respondents believed that palliative surgery was best de-
tive Surgery--Results of Soci-
members of the Society of Surgical
fined based on preoperative intent, 27% based on postoperative factors, and
ety of Surgical Oncology Sur-
Oncology (N = 419 responses). This
30% on patient prognosis. Only 43% considered estimated patient survival time
vey (McCahill et al., 2002a,
phase was intended to provide a na-
an important factor in defining palliative surgery, 22% considered estimated
2002b)
tional perspective on the topic of
patient survival time an important factor in defining palliative surgery, and 22%
palliative surgery and to expand
considered yearly survival rate important. Patient symptom relief and pain re-
knowledge of surgeons' decision
lief were identified as the two most important goals in palliative surgery, with
making.
increased survival the least important. On a scale of 1­7 (1 = uncommon to 7
= common), surgeons reported that the most common ethical dilemmas in
palliative surgery were providing patients with honest information without de-
stroying hope and preserving patient choice. On a scale of 1­7 (1 = not a bar-
rier to 7 = severe barrier), surgeons rated the most severe barriers to optimum
use of palliative surgery as limitations of managed care and referral to surgery
by other specialists. They rated the least severe barriers to palliative surgery as
surgeon avoidance of dying patients and surgery department reluctance to per-
form palliative surgery.
Preoperatively, surgeons identified 22 (37%) operations as palliative and 37
IV
A Prospective Evaluation of
Prospective evaluation of patients
(63%) as curative. Thirty-three of 59 patients (56%) were symptomatic preop-
Palliative Outcomes for Surgery
undergoing palliative surgery (N =
eratively, and symptom resolution was documented in 79% surviving more
o f Advanced Malignancies
59) with longitudinal measures for
than 30 days. Good to excellent palliation, defined as more than 70% symptom-
(McCahill et al., 2003)
one year. Outcomes expanded to
free nonhospitalized days relative to postoperative days of life, was achieved in
provide more detailed evaluation of
53% of patients categorized as palliative. Among patients with postoperative
symptom management and QOL.
survival of less than six months, 63% had good to excellent palliation. The ma-
Qualitative evaluation included in-
jority of patients who were symptomatic and undergoing major operations for
depth interviews with patients, fam-
advanced malignancies attained good to excellent symptom relief. Outcome
ily caregivers, and surgeons pre-
measurements other than survival are feasible and likely to play a large role in
and postoperatively to further de-
defining surgery as an important component of multimodal palliative care.
scribe decisions and outcomes re-
lated to surgery.
The outcome and service needs of 302 consecutive patients with malignancies
Prospective evaluations of all sur-
V
A Comparison of Resource
undergoing surgeon-defined curative or palliative surgery were analyzed over a
geries during a three-month period
Consumption in Curative and
four-month period. Previous treatment history, comorbidities, symptoms, pro-
(N = 319) with six-month follow-
Palliative Surgery (Cullinane et
cedures, outcomes, and use of supportive services were collected. Patients were
up. The investigators extended the
al., in press)
followed for six months after the surgical procedures. Surgeries performed for
outcomes of surgery to be evalu-
cure were for breast or prostate cancer and for palliation were for breast, lung,
ated based on phases I­IV.
and bone or soft-tissue tumors. Three (1%) curative and four (6%) palliative
deaths occurred during surgical admission. Mean hospital stay was 5.1 days
(range = 0­58 days) for curative and 1.9 days (range = 0­34 days) for palliative
patients. Following discharge, a total of 4,690 encounters with the cancer cen-
ter occurred, including 1,676 encounters with surgery, 1,595 encounters with
medical oncology, 1,006 encounters with radiation oncology, 226 visits to medi-
cal specialists, and 187 visits to supportive services. Mean numbers of encoun-
ters for curative and palliative patients were 15 and 17, respectively (p = 0.41).
(Continued on next page)
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E109
Table 1. Description of Program of Research of Palliative Surgery (Continued)
Phase
Study
Design
Key Findings
Curative patients were more likely to have visits with therapeutic intent, includ-
ing chemotherapy (p = 0.01) or radiation (p = 0.003). Readmission occurred
for 82 (34%) curative and 28 (48%) palliative patients during the six-month
period (p = 0.04). Palliative patients were more likely to be admitted for symp-
tom management (p < 0.0001), whereas curative patients were more likely to
be admitted for repeat procedures (p = 0.006).
Family caregivers were assessed
The study findings indicated important family caregiver QOL concerns and
VI
Concerns of Family Caregivers
prior to planned palliative surgery
needs for support at the time surrounding surgery for advanced disease. Psy-
of Patients With Cancer Facing
and at two and six weeks postsur-
chological issues were most pronounced with common needs of uncertainty,
Surgery for Advanced Malig-
gery. Quantitative assessment of
fears regarding the future, and loss. Family caregivers voiced concerns about
nancies (Borneman et al.,
caregiver QOL occurred at each
surgical risks and care after surgery and experienced recognition of the pa-
2003)
time point. A subset of nine care-
tients' declining status. The investigators concluded that surgery is an impor-
givers also participated in a struc-
tant component of palliative care and is an area requiring further research and
tured interview presurgery and at
clinical attention.
two weeks postsurgery.
life with surgical treatment. For many patients, the surgery
intent was palliative and the degree of success might vary,
followed very extensive cancer treatment, often including
most patients still focused on the possibility of continued
chemotherapy and radiation and sometimes including multiple
treatment and prolonged life. Following subtotal resection of
surgeries. Patients did not seem to believe that the risks of sur-
the disease, one patient said, "I feel the surgery is not com-
gery were an important consideration in opting whether to have
plete. I still have a tumor in my kidney." Another described
it, but rather considered that "all surgeries have risk." Patients
having "umpteen million brick walls thrown in my face" but
acknowledged having been informed of the risks of surgery,
planned to continue the battle against the disease. Patients
including the possibility of death or worsening symptoms.
commonly recognized that even symptoms that may have
However, most believed that the risks were known and that
been effectively alleviated by surgery might return with future
their decision to proceed was deliberate and independent.
recurrent tumor growth. One patient described waiting for the
In the interviews conducted postoperatively, patients dis-
"little time bombs" to go off in his body.
cussed their overall QOL after surgery, the decision to have
Patients frequently discussed the importance of having faith
the surgery, suggestions that they would make for others, and
through the experience of surgery as well as for the future.
plans following hospital discharge and for the future. Figure
One patient described God as guiding the surgeon. This time
6 includes examples of patient experiences related to physical,
of illness was a time of reflection for patients. One patient
psychological, social, and spiritual well-being. Again, al-
described how "an unexamined life isn't worth living" and
though most patients clearly had been told that the surgical
that he had, in fact, examined his life. Others seemed to see
Preoperative
Preoperative
1. How would you describe your overall status at this time?
1. Describe the overall status of the patient, general condition for surgery,
2. Have you had any prior treatments for your symptoms or cancer?
major comorbidities, concerns, or worries.
3. What have you been told about the potential benefits of the surgery? What
2. Please identify the major problems or symptoms that are prompting this
do you think this surgery will accomplish?
operation.
4. What are your thoughts about any risks associated with surgery?
3. What are the major goals which you hope to accomplish in this operation?
5. Do you think other options are available to treat your problem besides sur-
4. Do you anticipate that the proposed surgery will significantly alter this
gery?
patient's disease course?
6. Was your decision to proceed with surgery difficult for you to make? Was
5. Are there any alternative options to treat this situation?
anyone influential (your doctor, a family member, your surgeon), or did you
6. How was the decision to proceed with surgery made?
make most of the decision yourself?
7. How likely is the proposed operation to result in good or excellent palliation
for this patient?
Postoperative
1. How would you describe your overall status at this time?
Postoperative
2. Can you recall the major problems or symptoms that led to your surgery?
1. How would you describe the overall condition of the patient?
3. How have those symptoms or problems been since surgery?
2. Could you discuss what you found at surgery and whether your original op-
4. Do you feel the symptoms or problems that prompted your surgery have
erative plans were altered?
improved?
3. Were you able to accomplish your major intended goals of the operation?
5. Have you had any unexpected problems or trouble after surgery?
4. How effective do you feel the operation was at alleviating the symptom or
6. Do you feel you were well aware of potential side effects or complications
problem that prompted the operation?
from surgery?
5. Would you say you were successful at achieving good or excellent palliation?
7. Do you feel good about your decision to have had surgery? Would you make
6. Given the same set of circumstances, patient situation, and comorbidities,
the same decision again?
would you offer the operation again?
8. Do you feel the surgery has or will enhance your overall quality of life?
Figure 2. Patient Interview Guide
Figure 3. Surgeon Interview Guide
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E110
Table 2. Demographics
Physical Well-Being
Pain
Variable
n
Yes, um, pain, I think my spleen is starting to bother me. . . . Cancer seems to
be more of a different kind of pain than other pains. I have had quite a lot of
Patient (N = 10)
surgeries. And cancer is more of a dull, nagging pain. Um, sometimes kind of
Age (years)
--
a stingy pain, but it's just there, so it gets kinda like a toothache. . . . I think it
­
X (Range) = 57.2 (42­74)
makes you irritable sometimes.
Gender
4
Female
Psychological Well-Being
6
Male
Anxiety
Ethnicity
I'm very, very vulnerable. To dying. They haven't really told me much. No. You
8
Caucasian
know nothing, ever, really; I don't have the experience that anything really gets
1
Asian
nailed, you know? I mean, I wouldn't know whether they--I know it's all brand
1
Hispanic
new. It seems to be brand new.
Primary language
Coping
9
English
The treatment--the treatment's a bear. That is not a mind-over-matter situa-
1
Spanish
tion. I'm a mind-over-matter person and I can usually say, okay, I'm sore from
Residence
the surgery, and I listen to my body and the pain and what I can do and can't
1
Lives alone
do, but the treatment . . . it controls ya. Yeah, so, you know, if I have to go. . .
3
Lives with extended family
. You know, I just have to look at the positive of it and say it's going to keep me
6
Lives with spouse
a little longer for my babies--that's how I look at it.
Employment
3
Disabled
Social Well-Being
1
Medical leave
Change in Relationships
6
Retired
Everyone is coping great. My wife is, ah, wonderful; she's holding down a job and
Patient and family income
coming here, helping me, doing my bandage changes, and sitting with me. My
6
$10,000­$45,000
oldest daughter is handling it very well. My youngest daughter is not handling it
4
$46,000 ­ > $80,000
quite as well. She's tended to withdraw a little bit. And we're looking into getting
Place of birth
her some professional help to get through this. But I think once I'm through the
8
United States
surgery, and she sees that my quality of life has improved 100%, then I'll be able
2
Other
to hang out with her and that should just solve everything.
Years of formal education
6
College graduate
Spiritual Well-Being
4
Graduate studies
Faith
9
Religious preference
You know, God is with me, and, you know, God will help me. And try your best
Diagnosis
to meet whatever you need to cure illness. And I think God will help me. What-
2
Esophageal cancer
ever comes. You know, I don't worry. Yeah, because I know God. God will help
2
Colon cancer
me and, if not, then I will, I'll be going to the heaven.
1
Breast cancer
1
Kidney cancer
Figure 4. Patient Presurgery Quality of Life
1
Stomach cancer
1
Melanoma
surgery as a pivotal time in their illness, allowing them time
1
Hodgkin's disease
1
Leg squamous cell carcinoma
to pause and consider life's meaning and priorities.
Figure 7 includes some of the comments patients made in
Surgeon (N = 3)
relation to their decision to have surgery. Patients seemed to
Age (years)
generally affirm that the decision to have surgery had been a
­
Range = 43­53
good choice and to recognize that, in most instances, surgery
Gender
would give the physicians an opportunity to evaluate their
0
Female
advanced disease. Patients had a strong sense of "not giving
3
Male
up" and continued to search for traditional or alternative treat-
Ethnicity
1
Caucasian
ments that might lengthen life.
1
Asian
Surgeons' Interviews
1
Hispanic
Born in the United States
Figure 8 describes the key findings from the surgeons' in-
1
Yes
terviews conducted preoperatively. In general, surgeons de-
2
No
scribed symptoms leading to the decision for an operation and
Number of years in medicine
the goal for symptom relief. They described the importance of
--
­
X (Range) = 22 (19­25)
helping patients understand surgical options and, as reflected
Number of years in oncology
--
in the literature, the challenge of maintaining hope while being
­
X (Range) = 15 (10­19)
realistic and honest in communicating the goals as palliative
Hours of palliative care education during medical school
--
­
X (Range) = 2.8 (0­4)
rather than curative in nature.
Hours of palliative care education during residency or fellowship
When discussing decision making regarding code status of
--
­
X (Range) = 4.7 (0­10)
patients, surgeons were conflicted between avoiding resuscita-
Hours of palliative care continuing education
tion because of the patient's advanced disease while recogniz-
--
­
X (Range) = 13.3 (10­20)
ing possible need for resuscitation in the situation of potentially
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E111
Surgery-Only Option
Physical Well-Being
Because this is one of the slower--slower growing cancers, radiation and
Gastrointestinal Symptoms
chemo wouldn't have helped at all. So, there was--there was no option other
I used to always, I had the constant urge that I was going to have a bowel
than--other than the surgery--there was no option.
movement. Well, I did not have a bowel movement, but, and this urge is so
strong I, I'd go in and sit on the toilet. And then, of course, I would pass some
Cure or Palliation
mucous and stuff. Um, there for a while before the surgery, oh, it was just ter-
At least I'll have a chance of being cancer free. . . . Well, somewhat cancer free
rible. And a lot of it would be quite bloody. And, ah, you know, I had a good day
for a while before the next bombardment, since it's obviously--it's obviously
yesterday. I had a good night last night and the night before that I had a good
a virus that I can't fight off. My immune system's been so compromised over
night.
the years that it's obviously one that I can't fight.
Pain
Increased Length of Survival
So, because I've had the pain, it's been a different pain than, than it was. So, I
My understanding is just to slow it down, because it's all the way through my
guess, it, that part changed. Maybe after the pain goes away totally from the
lymph system already. That means it's already metastasized. I'll guess we do the
surgery, I would notice that part. Um. Unexpected, um. Maybe just the way the
surgery and then I'll do treatment again. And then, if my body can withstand it,
pain was. I thought it was going to be different than it was. And then how he
then I'll do the last series and probably just have my CAT scans and wait for it to
told me how it was going to be, it was different than that. But, um, no. No. Not
pop up. That's my understanding. What they told me is I won't be in remission
really. Just the worries that if it's done correctly, I guess, but I guess that will
again. I'm in what's called a transition, and, um, so it just depends on how my
show itself.
body continues the transition--how fast or how slow it goes.
Psychological Well-Being
Accepts Risk
But now I feel even the surgery's not complete. I still have a tumor in my kid-
I don't see much risk. But I will accept the risk if there is a risk. Because that's,
ney. But that is not operable based on what [the doctor] told me. Just, just a
that's a condition. They will give me surgery; you got to accept the risks. So,
few alternatives. You know, it's a surgery, remove the whole kidney? Or do the
in my previous experience, it was very easy to remove. You open, then you take
gene therapy? Or do the freezing or burn technique, you know. So there's still
tumor. So, I know there always was a risk, but I, I don't worry.
a chance.
Risk of Death
Spiritual Well-Being
It might have been me. [Laughs] That I could have died. You know I could die.
They could go in, and I could die, right then and there.
It's, ah, I realize my days are numbered, you know. But, ah, and if, if I'm go-
ing to be in misery, I don't even want to be here. You know if, if, if they can, I'm
Risk of Complications
sure that's what they're trying to do is make me comfortable. And, ah, and that's
If my, if my heart doesn't stop, if I don't internally hemorrhage, my lung doesn't
fine with me. I, ah, I, ah, you know, if I can go out and do a little bit of this and
collapse, they don't inadvertently paralyze me, ah, yeah, it--I have--I have pretty
a little bit of that, and, ah, go watch my granddaughters play softball, what
good odds. I think that they originally started out as 60/40 but I--I think they
more? [Laughs]
bumped them up a little so I have pretty good odds of surviving it. But you do
have to--you have to live with those problems, all the excess baggage.
Figure 6. Patient Postsurgery Quality of Life
Self-Directed Decision
No, I, when I was evolving with all of this and watching Moyer [television spe-
cial on death] and everything like that, I knew that no one else could do this. I
mean, I couldn't have dumped this decision on anybody. If, for whatever the
Well, you know, this is really, it's difficult to answer because now [the doctor]
devil it was, I was trying to get clear about and what I was going to do, it had
has been in there and he has seen what is there. So, now, is it a question:
to be my decision.
Would I have another surgery, well really and truly knowing what [the doctor]
knows, and he is the surgeon, would he perform another surgery? Yeah, I prob-
Figure 5. Patient Presurgery Decisions
ably would. I think I probably would. 'Cause if you don't, if you don't do some-
thing, you're not going to get anything, you know. And, I put the faith in the
reversible complications. Physicians discussed an awareness of
doctors. I mean, the tumor in the lung is supposedly disappeared. . . . The ones
the risks involved with surgery and balancing this with poten-
on the lymph nodes is, is practically gone. The tumor that's on the liver is, is
tial palliative benefit. One surgeon described the challenge of
reduced significantly. So, he knows what he's doing. Yeah. So, no, I feel that
[the doctor] did, when he got in there and saw what he was faced with, I'm sure
continuing to provide care and his commitment to serve as the
that he did everything within his ability to help me.
primary physician for patients even as their health declined.
This surgeon described major fears of patients "being in pain
I don't think there was anything left. I mean, when I came here for that surgery,
and being abandoned." He described the value of assuring pa-
it was the end to me. I needed to take care of what needed to be taken care of
tients that the physician would "be there at the end" and the
or I just didn't want to go on, really. I haven't eat right for three years, and when
you spend all that time, you know, just having stuff go down your throat and
importance of continued care for the patient, despite the fact
pour out a hole and burn your skin. . . . It's just terrible. There's a place that you
that there was no role for further surgical intervention.
know it's over, you can't stand it anymore.
Postoperatively, surgeons were interviewed regarding their
perceptions of the outcomes of the surgery. They discussed
Yeah. Every time my friend, or whoever, has cancer, I told them don't give up.
the overall status of the patient, the operation itself, and their
Try your best. Find an alternative. If you're rejected by this doctor, don't just
give up. Keep on trying whatever possible, whatever you have to go through.
communication with the patient and the family. Figure 9 pro-
So, that's the only way. A lot of my friends are cancer patients. When they come
vides representative comments from those interviews. Sur-
to the end of the tunnel, they don't know how to do and they are so depressed,
geons described the status of the patient in terms of the extent
I say don't worry. We already have the problem. You got to face it. Your worry
of pain or other symptom relief that had been possible thus far.
doesn't help. You know, you got to ask God to give you a day. Use the medi-
When discussing the effectiveness of the operation, surgeons
cal technology available. . . . Somebody may save you. You know, a miracle.
acknowledged that the procedure often had been less than
This could happen to you, too. It happened to me many times. And I do see
completely successful in eliminating symptoms. One surgeon
something like this not just happen to me, happen to other people.
described, in detail, his own philosophy of balancing the extent
Figure 7. Patient Postsurgery Decisions
of surgically related hospital recovery time with the estimated
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E112
geon decision making in advanced disease. This qualitative
Symptoms Leading to Surgery
study is one component of a program of research in the area
Drainage. Through the rectum. That he cannot control. He says it bothers him
of palliative surgery that began in 1999. To date, this research
a lot all the time. He said it was a real burden over the Christmas and New
has included retrospective and prospective evaluation of the
Year's holidays. So, I think it, it interferes with him socially just because of
use of palliative surgery in a cancer center (Krouse et al.,
the drainage and the lack of control and the fact that he just can't get com-
2001), a national survey of surgical oncologists (McCahill et
fortable.
al., 2002a, 2002b), a study of QOL and symptom outcomes of
Goals of Surgery
palliative surgery, and an exploration of family caregiver per-
The major goal is cure. So, not only is it good in the sense of increasing sur-
spectives surrounding surgery (Borneman et al., 2003). This
vival, but it is also very good in decreasing symptoms such as swallowing and
study of patient and surgeon decision making contributes to
pain. So, although it does not affect the metastatic disease, obviously, it does
this program of research by sharing subjective information
affect quality of life, and most patients that undergo surgery eat the entire pe-
and adds to the understanding of QOL factors in this popula-
riod until they die. And that is a major advantage of surgery. It has to be done
with a low morbidity. If you have a high morbidity, then all the benefit of sur-
tion.
gery is gone.
The study findings indicate that the physical impact of un-
controlled symptoms is the primary motivation to consider
Patient Decisions Regarding Surgery
palliative surgery but that the social impact of these symptoms
I don't think they [patient and family], they think of it as a curative, but I do think
and the need to maintain hope also factor heavily. Thus, as fu-
that they think that his life will be prolonged. They know that it's going to re-
cur again, but they think if you can prolong the time between recurrences to one
ture investigators evaluate palliative treatments, these out-
to two years, his chance will be better. And I think there's also that, ah, element
comes are important to consider. Study findings also revealed
of hope that a new drug may be developed or a new form of treatment. I don't
that patients often held on to hope for cure even when they had
think they're grasping at straws, but I think there is that, that element of hope.
been given information about the palliative intent of surgery.
Patients generally considered surgery as the only option and
Discontinuing Treatment or Code Status
I don't discuss code status, because I think this guy has a year to live. I think
saw surgical risks as inherent and not major influences in de-
he's made the investment. He's made the commitment to go through a pain-
cision making. They believed that the decision to pursue sur-
ful surgical procedure. . . . It's a big investment on the part of the patient. And
gery was made deliberately and independently by themselves,
I think he's made a decision that he's not ready to give up. And to me the DNR
and they relied on faith to cope with the possibility of a nega-
[do-not-resuscitate order] is a give-up. So, if he had a cardiac event during the
tive outcome. Postoperatively, patients generally regarded
operation, I wouldn't stop the operation. I'd try to deal with the cardiac event.
surgery as the right choice because it served as a source of
If two days after a successful palliative procedure, he was still comatose and,
hope and gave them needed time for reflection.
um, had, ah, cardiac output of one, secondary to a myocardial infarction, then,
An important methodologic note is that the investigators
then I would want to make that decision.
found that the two-week time period between surgery and the
Risks Involved With Surgery
He has 30% three-year survival with chemo-radiation, but the five-year survival
is less than 5%. Most patients die before the third year--70% of them die be-
fore. But, basically, there are virtually no patients that survive past five years
Status of Patient
with chemo-radiation alone. The combination of chemo-radiation followed by
Postoperatively, the mucus discharge was markedly reduced. That was suc-
surgery achieves about 30% long-term survivors. And I think in, in young pa-
cessful. The patient has a lot less pelvic pain in general, maybe due to a par-
tients like this one, without significant additional morbidity that might be dying
tial obstruction from the tumor in that area, even though he had been already
off, this is a rational treatment, and the patient understands those options and
diverted. And early on he had better spirits and was eating a little bit more. I told
selected the most aggressive treatment, understanding that the risk is 5%
him that likely we would help at least the mucus discharge, but maybe not the
mortality up front.
pelvic pain. In general, he felt better at least early on. And, in fact, it helped the
pelvic pain also, so he was happy with that.
Physician Communication With the Patient
He had an excellent understanding of what we're going to do. I think he's prob-
Surgery Effectiveness
ably more optimistic than I would tell him to be about just the complete nature
He wasn't in the hope of having normal bowel function. He was just in hopes
of doing this. He doesn't completely understand his disease, but he under-
of removing the side effects of the tumor being present in the rectum and
stands the operation. He understands the goals of the operation, and he does
bowel. So, if it's three months now postoperative for the palliation for the pain
know what the limitations are. But I think he's still very optimistic. A better
and for the mucus discharge, I'm satisfied. So, for one week in the hospital, that
outcome from his disease as a whole. He knows that, absolutely. He knows that
was rational. . . . And he's not only exceeded the three months, he's also got-
this will define the fact that he will never be put back together.
ten very good palliation for the specific symptoms that were addressed.
It's a question of how long it takes the patient to have the surgical palliation and
Figure 8. Surgeon Comments Presurgery
recover from it to how long they are going to survive. So, if it's a 30-minute op-
eration of removing that critical symptom and they die in three weeks, I'm okay
with that. And if they die from progressive disease elsewhere three weeks later, I
survival time of the patient. In his example, he considered sur-
have no problem with that. If it requires one week of hospitalization. . . . An op-
gery that was anticipated to require minimal postoperative hos-
eration and one week of hospitalization, and the patient dies of their progressive
pitalization time to be justified even if the patient had antici-
disease three weeks later, I think that's unacceptable. So, there is some ratio there.
pated short survival time, but he considered it unjustified to
Communication
perform surgery with prolonged postoperative hospitalization
I met with [the patient's wife] on Thursday, spent an hour with her, going over
and recovery periods if the remaining life span was short.
all the issues, tried to help her deal with the loss of her husband. I usually do
that. I invite my patient's family to come back and meet with me as many times
Discussion
as they need, because I think if you understand what went wrong, it doesn't
bring people back, but at least you don't leave questions unanswered.
The investigators believe that this study contributes to an
Figure 9. Surgeon Comments Postsurgery
understanding of palliative care by exploring patient and sur-
ONCOLOGY NURSING FORUM ­ VOL 30, NO 6, 2003
E113
postoperative interview was too brief to fully assess symptoms
amidst advanced disease. The nurse investigators were im-
and the physical impact of surgery. Future phases of this re-
pressed by the evident compassion expressed by the surgeons
search will delay postoperative follow-up to better capture
and their difficult challenges in making treatment decisions.
patient outcomes. The investigators were impressed by the re-
solve of patients to keep fighting their advanced disease and
Conclusion
their continued hope for extended life. These findings were
important indicators of the need to understand patient perspec-
Comprehensive care for patients with advanced cancer
tives of treatment options and the need for palliative care con-
seeks to achieve a balance of providing aggressive care, ensur-
current with active treatment of disease.
ing optimal symptom management, and maintaining a focus
The surgeon interviews provided important perspectives
on comfort. Recent literature has explored the role of chemo-
about their roles in decision making and illustrated the impor-
therapy or radiation therapy with less emphasis on palliative
tance of the interdisciplinary approach to care in advanced
surgery. This qualitative study is a component of a larger, lon-
disease. Surgeons conveyed that the need to balance the risk
gitudinal program of research that hopes to advance the under-
of surgery with the physical and temporal benefit was fore-
standing of the role of surgery in palliative care. Study find-
most in their recommendations to patients. However, they
ings helped to advance the conceptual model and provided
were challenged frequently to maintain patients' hope while
direction for future intervention.
trying to communicate an honest assessment of patients' sta-
Patients with cancer undergoing surgery may be viewed in an
tus. All surgeons emphasized the importance of ensuring that
acute care focus with attention given to physical needs. This
patients and their families have a clear understanding of the
study illustrates the comprehensive needs of surgical patients
options available, although they did have some reluctance to
encompassing physical, psychological, social, and spiritual
discuss patient code status. Frequently, surgeons described the
well-being. These findings also indicate the importance of co-
surgical outcomes as somewhat poorer than originally ex-
ordinated interdisciplinary care in surgical oncology.
pected.
The surgeon interviews illustrated the commitment of these
Author Contact: Betty R. Ferrell, PhD, FAAN, can be reached at
physicians to patient comfort, QOL, and maintaining hope
bferrell@coh.org, with copy to editor at rose_mary@earthlink.net.
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