https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779776/pdf/atm-04-04-77.

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Review Article
Page 1 of 11

Rethinking autonomy: decision making between patient and

surgeon in advanced illnesses
Lauren M. Wancata1,2, Daniel B. Hinshaw1,3
1
Department of Surgery, University of Michigan, Ann Arbor, MI, USA; 2Department of Internal Medicine, Hospice and Palliative Medicine,
University of Michigan Geriatrics Center, Ann Arbor, MI, USA; 3Palliative Care Program, VA Ann Arbor Health Care System, Ann Arbor, MI, USA
Contributions: (I) Conception and design: All authors; (II) Administrative support: All authors; (III) Provision of study materials or patients: All
authors; (IV) Collection and assembly of data: All authors; (V) Data analysis and interpretation: All authors; (VI) Manuscript writing: All authors; (VII)
Final approval of manuscript: All authors.
Correspondence to: Lauren M. Wancata, MD. Department of Internal Medicine, Hospice and Palliative Medicine, University of Michigan, 2215 Fuller
Road (11G), Ann Arbor, MI 48105, USA. Email: [email protected].

Abstract: Patients with advanced illness such as advanced stage cancer presenting with the need for possible
surgical intervention can be some of the most challenging cases for a surgeon. Often there are multiple factors
influencing the decisions made. For patients they are facing not just the effects of the disease on their body, but
the stark realization that the disease will also limit their life. Not only are these factors a consideration when
patients are making decisions, but also the desire to make the decision that is best for themselves, the autonomous
decision. Also included in this process for the patient facing the possible need for an intervention is the surgeon.
While patient autonomy remains one of the main principles within medicine, guiding treatment decisions, there
is also the surgeon’s autonomy to be considered. Surgeons determine if there is even a possible intervention to be
offered to patients, a decision making process that respects surgeons’ autonomous choices and includes elements of
paternalism as surgeons utilize their expertise to make decisions. Included in the treatment decisions that are made
and the care of the patient is the impact patients’ outcomes have on the surgeon, the inherent drive to be the best
for the patient and desire for good outcomes for the patient. While both the patient’s and surgeon’s autonomy are a
dynamic interface influencing decision making, the main goal for the patient facing a palliative procedure is that of
making treatment decisions based on the concept of shared decision making, always giving primary consideration
to the patient’s goals and values. Lastly, regardless of the decision made, it is the responsibility of surgeons to their
patients to be a source of support through this challenging time.

Keywords: Advanced illness; autonomy; palliative care; shared decision making; surgery

Submitted Jan 21, 2016. Accepted for publication Jan 25, 2016.
doi: 10.3978/j.issn.2305-5839.2016.01.36
View this article at: http://dx.doi.org/10.3978/j.issn.2305-5839.2016.01.36

Mr. Jones presents to a surgeon’s office for a second opinion presents to the hospital 1 month later with what appears to
regarding his colon cancer. He has advanced disease with be a malignant bowel obstruction.
metastases to his liver and lungs complicated by multiple Patients like Mr. Jones present a challenging clinical
other medical co-morbidities. Prior to this consultation, dilemma for surgeons; how can they best use their skills
he has been seen by other physicians, both surgeons and and knowledge to address the needs of patients with
medical oncologists. Previously, surgeons have declined advanced illnesses? There are many dynamic factors at play
to operate while the oncologists offered him palliative that can influence the decision making for patients and
chemotherapy. Consistent with the recommendations of their physicians. In medical decision making the ethical
the other consultants, the surgeon does not offer operative principle of autonomy, or right of self-determination
treatment for his advanced cancer at this time. Mr. Jones must be respected. Physicians must adequately inform

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Page 2 of 11 Wancata and Hinshaw. Patient and surgeon autonomy in advanced illness

their patients to ensure that they can make autonomous paternalistic view in which the physician made decisions
decisions. While the goal is always to respect patient for the patient to that of patient autonomy and the right to
autonomy, surgeon autonomy must be considered as well. decide as the standard. While the patient’s right to decide
Consistent with the ethical principles of beneficence and is of utmost importance it still remains the responsibility
non-maleficence, surgeons are responsible for determining of the physician to ensure patients have been provided
possible interventions to offer their patients that might be the knowledge they need, to elicit their preferences and
beneficial and not harmful. However, only patients’ values collaborate with the patient in the decision making process
and goals in collision with the reality of a limited prognosis in what has become known as shared decision making.
can provide a meaningful context for understanding what Among the many challenges and complexities that are
is truly beneficial and not harmful. Whether terminally ill an inherent part of the practice of medicine, caring for the
patients’ goals of care are primarily focused on enjoying patient who is in the late stages of an advanced illness can
their remaining time with relief of any distressing symptoms be particularly challenging. It can be a stressful time for
or the continued pursuit of life-prolonging treatment, all involved, patient, family and physician, with personal
determination of a course of action will depend upon a values and goals at stake and no perfect algorithm to follow.
shared decision making process that respects both patient It can become a medical and moral dilemma, especially
and surgeon autonomy. for patients who may benefit from operative interventions,
but pose an inordinate operative risk or for those patients
who greatly desire an operation even when it will likely not
Introduction
provide any meaningful benefit. An ethical tug of war may
The patient-physician relationship is undoubtedly distinct ensue between patients’ and surgeons’ goals and desires,
and unlike almost any other relationship between persons. always keeping in mind the oath to do no harm. In such
For the physician there is a desire to help patients, whereas difficult situations, how can patient and surgeon autonomy
for the patient entering into this relationship there is a need be balanced with the ultimate goal of helping the patient
for the physician’s services. An important foundation of this while avoiding harm?
relationship is the principle of implicit trust; trust that the
physician will do what is best for the patient. Unfortunately,
The patient
patients are often confronted with limited options regarding
their choice of physicians due to the requirements of health Autonomy, beneficence, non-maleficence and justice, the
insurers and the nature of acute inpatient care. Even then four main principles of bioethics, are often utilized to
the primary physician responsible for a patient’s overall care shape our decision making within the medical field. While
can be constantly changing. Ideally, patients can develop one does not take precedence over another, the concept
meaningful, ongoing relationships with their physicians, but of autonomy or self-rule has become the basis of patient
urgent or emergent situations may limit such opportunities. decision making. Respecting autonomy allows patients
The patient-surgeon relationship poses some unique to make decisions that are in their best interests, as they
challenges for both patients and surgeons. For surgeons, are usually the best judges of those interests (1). In past
there is a unique tension between the goals of beneficence years much of the decisions made in medicine were made
and non-maleficence; the invasive interventions they by physicians determining what they felt was best for
offer their patients, while intended to help, can also bring the patient. Since then there has been a transition from
significant harm. Patients place their trust and confidence medical paternalism to an increasing recognition of patient
in surgeons with the assumption that their interventions are autonomy or the patient’s right to decide (2,3). Although
always meant to and expected to help. When determining this shift in authority has clearly occurred between
treatment plans and care options for surgical patients, physician and patient decision making, there still remains
additional factors influence the final decision and plan. the responsibility of the physician to the patient. While
Those factors include, but are not limited to, what resources the physician is not making the decisions for the patient,
does the hospital have, what skills does the surgeon have, the physician has a depth of knowledge the patient will
the patient’s anatomy, the patient’s overall status and what not have and thus, it is incumbent upon the physician to
are the surgical options for the patient. Over the years guide the patient through this process (1,4,5). With the
medical decision making has been transformed from a specialized medical knowledge and relationship of trust that

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ideally is formed between surgeons and their patients, it is as discussed above. In order for surgeons to fully respect
the responsibility of surgeons to sufficiently inform their their patients’ autonomous decision the information
patients so that they can make decisions based on their provided should be pertinent to the issues and of sufficient
goals and values. When they are not adequately informed, detail so that patients can determine how it correlates
patients will be unable to balance the benefits and harms with their values and goals. The subsequent process of
and how each will affect their goals and quality of life; in a shared decision making that follows the delivery of this
sense this is not respecting patient autonomy (6). For each information is essential to respecting the patient’s right
individual it is important to remember that decisions will to decide. Within this process it is not just a statement of
be individualized; the decisions made will be based on the facts with the patient left to decide, but a dialogue among
weight given to different elements of the decision and how all involved. This dialogue must involve an understanding
the likely outcomes will in turn interact with and affect the of the disease, what are the possible treatment options, and
values of the individual (1,4). the risks and benefits involved. While the patient listens
For our patient Mr. Jones, while the standard of care to the surgeon’s thoughts, it is crucial for surgeons to elicit
for someone in his situation is in line with the surgeon’s and listen to their patient’s values and goals before true
initial recommendation for no operative intervention shared decision making can occur. After this has occurred,
(as determined at the clinic visit), the surgeon is still patients can make informed decisions in collaboration
responsible for ensuring that the patient is provided the with their surgeons. In the context of advanced illness,
information and reasoning as to why the decision was made. when considering a potentially dangerous procedure that
For patients who are not experts in their disease, what they may be of limited benefit, it is important to realize that
are most often left with are trust. It is trust that the surgeon shared decision making is not a static event, but an evolving
will provide them with the information and explanation process. Ideally, shared decision making can create the
they need to make decisions or why a decision was made opportunity for patients to explore all of their concerns
(1,7). This can be challenging as each patient may require and questions, eventually leading to the choice that is best
different levels or kinds of information and knowledge. for them, even when faced with limited options. When the
In an ideal situation there will be adequate time to truly options are limited to choices the patient would prefer not
get to know patients and determine what knowledge to make, it may be essential that the process extend beyond
should be shared with them based on their values, but a single discussion between surgeon and patient. Facing
unfortunately this often does not occur (3,8). What the gut wrenching possibility of less than ideal or even no
physicians are left with is trying to provide the information treatment options other than comfort care can be a very
that a “reasonable” person would want to know (3). Thus, bitter pill to swallow for some patients facing their death.
providing information to a patient may not be based on Allowing patients to fully participate with the surgeon in
what the patient needs, but on what a physician feels is what reviewing their options in relation to achievable goals can
most everyone else in the same situation would want to help honor their autonomy and restore a sense of control.
know. While this has become the standard in bioethics, the For the patient faced with progressive disease, nearing
physician must keep in mind that each patient is different, the end-of-life, there are often many changes occurring,
with varying needs which must be respected in order to emotions felt and evolution of relationships. While Mr.
honor the patient’s autonomy. Jones is facing the prospect of a difficult decision, other
While the previous recommendation for no operative patients often face the choice of no other “treatment”
intervention is considered standard of care, Mr. Jones has options from their physicians. During this time as patients
now presented to the hospital with a new diagnosis. As contemplate the prospect of their impending death,
all of the facts are not known, it is safe to assume there they may also be sensing or even grieving a loss of the
is a reconsideration of possible interventions to address relationship they have with their physician (9). With the
and treat this new complication of his disease process, loss of this relationship, patients may also fear they are
malignant bowel obstruction. Mr. Jones is likely facing losing their physician’s medical expertise (9). Physicians at
treatment of his obstruction by conservative (medical) the same time may harbor concerns that during this time of
management or operative intervention. As he is facing this transitions in care patients will feel a sense of abandonment.
possible decision, it will be imperative for the physician to Situations such as these highlight patients’ fears of being
provide him with the adequate information he will need, abandoned by their physicians not just at the end-of-life,

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Page 4 of 11 Wancata and Hinshaw. Patient and surgeon autonomy in advanced illness

but in other times of need as well (10). Regardless of the The surgeon
initial reason for its foundation, once patient-physician
Surgeons, like other physicians and health professionals,
relationships have developed, there must be an ongoing
have an inherent desire to heal patients, which may often
commitment to care for patients within these partnerships,
be colored with an unwavering dedication to curing the
which continues as shared decision making between patients
disease. While surgeons may often be accused of living
and physicians throughout the course of the illness to the
by the mantra to cut is to heal, those entering the surgical
greatest extent possible (10). While non-abandonment is
specialties initially focus their attention on learning how
viewed as an ethical and even legal obligation of a physician,
to operate, but spend the rest of their careers learning the
it is also a core value of the medical profession that is
more subtle art of when not to operate. In many cases,
reflected in the commitment to care for all patients (10).
especially those in which palliation is the primary intent,
Patients are ensured the care of their physician and the
as is the case for Mr. Jones and treatment of his bowel
physician’s commitment throughout the course of their
obstruction, a fine line must be traveled in deciding whether
entire illness, regardless of the outcome.
an operation will help or cause more harm to the patient.
For patients facing the prospect of a palliative procedure
at or near the end-of-life, these concepts of autonomy For surgeons these are the most challenging cases, both
shared decision making and non-abandonment become physically and mentally. Often the patient’s disease process
even more important. With the prospect of limited time, is such that the operation will not be quick, easy, or with
every decision becomes important as the patient focuses minimal blood loss and without complications. Frequently,
on what will help them achieve their goals. Likewise, in advanced illnesses like cancer, patients’ bodies have
for their surgeons the limited time remaining in which been ravaged by their disease, taking even the simplest of
to honor their terminally ill patients’ autonomy while operations to a more challenging level. Also impacting
faithfully accompanying them to the end of their journey the physician is the amount of mental fortitude involved
poses a direct challenge to surgeons’ commitment to non- in the decision making for these patients. The desire to
abandonment in the context of an emotionally charged and help patients has to be balanced with the intention not to
taxing relationship. Death can often be a difficult topic to maim the patient; how to help without adding undue harm.
discuss, with many often shying away from or completely Unfortunately, the decision to operate on such patients is
ignoring the subject. While it may be uncomfortable to not straight forward and there are no established algorithms
discuss future care plans regarding advanced illness or even or guidelines. The decision rests in the relationship formed
death it leaves a gap in the patient-physician relationship. between the patient and surgeon; while the patient has
Patients have reported a lack of communication regarding the final authority to say yes or no to a proposed course of
eliciting their preferences, outcomes of their disease and action, what role does the surgeon’s right to choose play in
advanced care planning for many years (11). While the final this situation? What about the surgeon’s autonomy?
decision regarding one’s care plans ultimately should be the The patient-surgeon relationship is a unique relationship
patient’s decision, it has been shown they do value the input in medicine. It must be one that is entered into with mutual
of the physician (12,13). As uncomfortable and uneasy as the acceptance and understanding of both the nature and risks
conversation may be it becomes the duty of the physician of surgical intervention from both parties; otherwise the
to explore these topics with the patient. Misalignment in physical impact of surgeons on their patients could be
this understanding can lead to unrealistic expectations and considered a form of assault. By performing operations,
even excess or unwanted treatment (14,15). This process surgeons gain an intimate view of their patients that no
of eliciting the patient’s wishes will always remain in flux; others have, which can create a bond that can only be
as conditions change and treatment decisions evolve there appreciated fully by those individuals (19). In order to create
will always be a need for continued communication and and sustain the patients of this relationship must trust that
reassessment of patients’ understanding and wishes (16,17). their surgeons will uphold the principles of beneficence and
The importance of this communication is ensuring the best non-maleficence during their care and treatment. It is this
decisions are made to honor the patient’s goals and values, unique relationship that is the foundation to many decisions
and for the physician to remain a source of empathy and the surgeon makes; always weighing what realistically can
support for the patient even when they have no curative and cannot be done to help the patient.
treatment options to offer (16-18). Insight into the surgeon’s mind was first presented by

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Charles Bosk in Forgive and Remember: managing medical therapies in the face of apparent futility they may be
failure (20). Since that initial study there have been attempting to prove to themselves and the patient that they
other studies that have tried to understand the surgeon’s can fix their mistakes and make their patients better. Caring
perspective and how decisions to operate and not to operate for patients upon whom one has operated, is a way of life
are made. By offering an operation, surgeons are not only with an emotional impact that one cannot just turn on and
agreeing to perform the best operation they can, they have off or disregard.
also acknowledged an intense personal responsibility to While on the way to meet Mr. Jones to discuss his
their patients (21). It is this responsibility to patients before, malignant bowel obstruction, the surgeon will likely be
during and after operations that often shapes the actions of pondering many different issues and decisions. One of the
surgeons. Work done by Schwarze and colleagues, which first decisions to be made is whether to operate or not.
evaluated surgeons’ conversations with patients regarding While in some cases the decision is straight forward, in
high risk operations and life support offers insight into the others it may not be so simple. Most often, the especially
minds of surgeons and what they inherently feel is their difficult and challenging decisions are encountered in high
responsibility to their patients (22). When entering into risk procedures or those with palliative intent. Mr. Jones is
the patient-surgeon relationship there is an agreement by not only in poor health, but with his diagnosis of malignant
both sides, that each will commit to getting through the bowel obstruction his median survival is dismal, making
operation and any issues that may arise in the postoperative the decision making process in his situation extremely
period (22). After this mutual understanding is forged, challenging. While patient autonomy is the standard
surgeons often retain a strong sense of responsibility, for decision making, there remain elements of physician
which may make any future deviation from the original autonomy that are essential to determining viable treatment
plan challenging. Any subsequent complications follow options. When deciding whether to operate and which
up visits, readmissions, or need for further interventions procedure to offer, surgeons must determine what they
are addressed by the surgeon who entered into the initial believe are the best options for their patients and make
agreement with the patient. Often surgeons feel they this determination by careful calculation of the trade-offs
intimately know their patients. After all, their hands have involved (24).
altered the patient’s anatomy and this act forms the basis A n o t h e r m a j o r f a c t o r i m p a c t i n g t h e s u r g e o n ’s
for the deep sense of responsibility the surgeon feels to the deliberations is the surgeon’s perception of patient
patient. Surgeons only ask for another surgeon to share in expectations. Even if the patient’s expectations have been
this responsibility when assistance is needed or the care the unrealistic from the beginning of their relationship, they
patient needs is outside of their expertise. will weigh heavily upon the surgeon at an emotional level.
The patient will always retain the central role in the Now, when evaluating him again, the surgeon may be
patient-surgeon relationship but it is also important to painfully aware that Mr. Jones may still be hoping that a
consider the impact of this unique relationship on the cure is somehow possible, or at least that the surgeon can
surgeon. For most surgeons there is a strong drive to do “fix” his obstruction. Patient denial can cause persistent
better, not only for their patients but also, to improve differences in understanding between patient and surgeon
the care they deliver to current and future patients. This of the true nature, goals, and limitations of a proposed
dynamic of the surgeon always wanting to do better within operation in the context of terminal illness. Emotions
the surgeon-patient relationship may contribute to the run high in such situations and rational discourse may be
common perception of surgeons as “never giving up” (even severely compromised, thus threatening true autonomous
if a patient may want to stop certain therapies), fighting for decision making both on the part of patient and surgeon.
the patient to the end. In a survey of vascular, cardiothoracic The surgeon’s own rational autonomous decision making
and neurosurgeons regarding withdrawal of postoperative will be in tension with the powerful emotions elicited by
life support, surgeons were less likely to withdraw the the patient’s desperate plea to do something, even though
support if the complication was due to surgeon error or in that ‘something’ may not be appropriate, purely on rational
the context of elective (as compared to emergent) cases (23). grounds. Thus, a surgeon’s sense of self-determination
These results offer further insight into surgeons’ thought or autonomy can be challenged at its core as compassion
processes, but also into their own consciousness of any fuels the desire to help the patient in spite of the rational
mistakes they have made. By prolonging life-sustaining probability of not being able to achieve the desired

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Page 6 of 11 Wancata and Hinshaw. Patient and surgeon autonomy in advanced illness

outcome. As the relationship between patient and surgeon help Mr. Jones achieve his goals possibly without operative
grows and the goals and values of the patient are further intervention; thus, allowing for a shared decision to be made
explored, rational discussion and reasoned autonomous that honors both the patient’s and surgeon’s autonomy.
decision making by both parties can become more difficult
as a result of the emotional bonds that are formed. For the
The patient and the surgeon
patient and surgeon facing a high stakes decision, emotions
can trump reason and threaten the autonomous decision- For the patient contemplating a procedure that is palliative
making of both sides, leading to decisions that may not in nature there are very few times when the decision to
truly honor the patient’s wishes or be consistent with proceed with treatment is straight forward. Many factors
the surgeon’s better judgment. Surgeons may sometimes are often at play and the decision is rarely made by one
find themselves offering futile or inappropriate surgical person. For Mr. Jones he would like improvement in his
interventions to avoid abandoning their patients even when symptoms and may also still be hoping for a cure, but it
their own clinical judgment and autonomy argue strongly must also be considered what is possible for Mr. Jones.
against it. Patients with incurable disease who have painful and
In navigating these challenging situations it is not only distressing symptoms are a clinical dilemma. For physicians
essential to recognize the strong emotional factors affecting there is an inherent and powerful desire to relieve suffering
surgeon decision making, but also it is often a lack of and make their patients better. While data has shown the
competency and training in caring for and communicating possibility of successfully relieving a patient’s malignant
with patients in palliative and end-of-life situations; bowel obstruction it is often accompanied by significant
which further exacerbates the problem (25,26). Surgeons morbidity, mortality and even failure (29). With limited
are first and foremost physicians who can operate. The data and experience available in treating patients with the
challenge for the surgeon is to know when not to operate goal of palliation and having no clear algorithm the surgeon
but still provide appropriate medical care for a very ill is left to determine the treatment plan based on the benefits
patient. Not understanding this fundamental principle can and burdens. Unfortunately, how to determine those
lead to suboptimal care at times, provided in the form of relative benefits and burdens prior to having an informed
overtreatment or treatment that is not in line with patients’ conversation with the patient remains largely unknown and
values and will result in considerable frustration on the a challenge in this patient population. In this process the
part of the surgeon. A concern as to why this occurs is the definition of success must be determined. Is it to be pain
physician’s fear of taking away hope from their patients by free, is it to eat one’s favorite meal again, and is it to live to
discussing these topics (16,27,28). Even though Mr. Jones the family reunion a few weeks away? In further defining
presents with an urgent medical issue there is most likely what is success can help to determine what is possible and
still some time for his surgeon to explore what Mr. Jones what is a burden to the patient. Ultimately, patients’ values
is hoping for as he reaches the end of his life. Within these and goals placed within a realistic understanding of their
conversations there will be time to allow the high emotions prognosis must define success.
and denial to dissipate, for the surgeon to get to know While one’s path can never truly be predicted, the idea
Mr. Jones as a person and for the surgeon to help guide of prognostication has be utilized to help inform those
Mr. Jones through this challenging time drawing on the conversations of what is to be expected and possibly help
surgeon’s knowledge and past experiences. Even though to define success. The concept of prognostication is based
it may be quite uncomfortable to discuss a poor prognosis on many elements including patient factors, available
or end-of-life issues, the physician must remember there treatments, prior experience and known data regarding a
is a duty to provide patients with the truth regarding their disease process. With so many data points’ prognostication
disease and that doing so can actually help the patient to remains a difficult process and is often not accurate, as the
be more hopeful (27,28). As the dialogue with Mr. Jones estimate is always in flux depending on the clinical situation.
continues, he relays that he would really like to have his Physicians often are poor prognosticators; an accurate
obstruction “fixed.” He finds joy in spending time with estimate only occurs a fraction of the time and quite often
his family, but the nausea and pain has been detrimental is an overly optimistic guess (30,31). Prognostication
to those important interactions. This knowledge can help does improve with experience, but interestingly when a
focus additional discussions of treatment options that can physician has a stronger relationship with the patient this

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is associated with a lower accuracy (30). Whether this has basic Activities of Daily Livings (ADLs) and some complex
to do with maintaining hope, one’s personal bond with the or instrumental ADLs (e.g., domestic chores, shopping)
patient, or clinical factors it is unclear, but what is clear is likely have months to live (ECOG 1-2); those with
that while in respecting patients’ autonomy and informing incurable, advanced disease who are needing to rest up to
them physicians are still limited by the boundaries of half of the day time and need some assistance with basic
being humans and not knowing all the answers. Even ADLs (e.g., bathing) likely have weeks to a few months at
with dramatic advancement of medical technologies and best (ECOG 3); those with advanced, incurable disease who
the continuous improvement of health care, determining are now essentially bedfast have days to a few weeks at best.
patient outcomes remains an imprecise science at best. As well, poor pain and symptom control can contribute
Often enough, patients undergoing palliative procedures significantly to what appears to be a worse prognosis.
meet their surgeon when the situation is urgent or even While the various prediction models may be helpful in
emergent, which leaves little time for the two to form an in- adding to the conversation, at a more fundamental level
depth relationship, in which to explore the patients’ goals there is another factor that guides the decision making
and values in order to fully address their questions and for many if not most patients and that is the implicit trust
concerns (8). Because of this there have been many scoring patients have in their surgeon. Surgeons have an inherent
systems created based on clinical and patient factors to help knowledge base due to their training and past experiences
provide possible prognostic information to the patient, that help them to make clinical decisions in patient care.
to guide the decision making process, when faced with And while it is the responsibility of surgeons to use this
limited time to make decisions (32-34). While determining knowledge to provide their patients with the facts they
these factors are helpful to physicians to supplement their need to make informed decisions regarding their care, there
decision making process and discussions with patients there is also an element of patient entrustment in the surgeon
is an unfortunate fact that these models can have variable to guide them in the “right” direction. During these
accuracy and at times are not helpful (35,36). The surgeon difficult times patients may not only lack knowledge and
must keep in mind that while these prediction models can understanding regarding their disease, but are in a state of
help to add clinical information and even an idea regarding disbelief and distress that creates further challenges to the
possible outcomes, they are not a substitute for talking with decision making process. Previous studies in esophageal
the patient and determining what their goals are so that a and pancreatic cancer patients have shed more light into
plan can be developed to possibly achieve those goals and this concept of patients placing trust in their surgeon
improve symptoms for the palliative patient. (39,40). There is the idea that surgery is the way to a cure,
While the scoring systems that have been established to which is often based on patients’ prior experiences or the
determine a patient’s prognosis or prediction of outcomes experiences of others who have undergone an operation.
remain imprecise there are ways to determine a general These perceptions may be further affected by prior
prognosis. For patients with advanced illness, especially experiences with loved ones or friends whose disease was
cancer, there are a few main factors that can be utilized too far advanced for an operation, raising the lingering
to estimate a prognosis. These include (I) the stage and question of a different outcome, if an operation could have
relative aggressiveness of the disease; (II) the risk of been performed. There is also the thought that if one is
any emergent complications of the disease; and (III) the being referred to a surgeon, there are good reasons this
patient’s functional status. Scoring systems such as the referral occurred at this time and to that specific surgeon.
Eastern Cooperative Oncology Group (ECOG), the Thus, patients place trust in what many may view as the
Palliative Performance Scale and Karnofsky Performance surgeon’s skill and expertise to provide ‘curative’ therapy
Status that determine a patient’s functional status have been and tend to accept any treatment they may recommend.
demonstrated to correspond with survival estimate for their And finally for many patients, trusting surgeons and their
disease (37,38). These scores in consideration with disease recommendations also means being resigned to the risks
factors and risk of complications from the disease can give involved. The risks would have to be accepted, whatever
the patient and the physician an estimate of their prognosis. they may be, in order to undergo the operation, especially
Patients with advanced, incurable and progressive illnesses when it is viewed as their only option (39-41). This concept
(e.g., metastatic cancer) without any immediately life- of feeling that there are no other options other than
threatening complications but who can perform all their what the physician or surgeon is recommending has been

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observed in other disease processes and treatment plans that not only symptom relief, but also cure of the disease
involve a high risk to benefit ratio. In children undergoing causing the symptoms. While this is the best outcome that
bone marrow transplants, often parents have felt there was one can achieve, most often for this patient population
no decision to be made, it was either undergo the treatment it is a rare situation, such as the patient presenting with
or die (42). Physicians and especially surgeons must realize advanced cancer and acute cholecystitis undergoing a
and be cognizant that often patients are placing their cholecystectomy, relieving them of the disease (cholecystitis)
trust and essentially their lives in the hands of the medical and the associated symptoms. Another situation that can
profession with the expectation that their physicians will be viewed in many ways from the standard definition of a
provide them with recommendations that have their best clinical success (cure) to that of utter failure is for patients
interests in mind. who may have been cured, but in the process, the procedure
There will always be an internal struggle for the did not help or even made their symptoms worse. For
surgeon caring for the palliative patient when attempting some, the symptoms and the distress they cause can be
to weigh the many forces that go into deciding to offer an worse than the security of having a cure. A third outcome
operative intervention. One must first make the decision of undergoing a procedure is that of not achieving cure, but
of what realistically can be offered to the patient under improving the patient’s symptoms and, in turn, their quality
the circumstances. If the surgeon does decide to offer an of life. This is the definition of a truly palliative procedure.
intervention, one must keep in mind truth telling and Lastly, the surgeon must realize there is one other possible
providing patients with the information they need to make outcome, one in which no improvement is made in the
an informed decision, while also realizing patients will patient’s symptoms; as well, the symptoms and poor quality
often place a significant amount of trust in the surgeons’ of life of the patient may have been exacerbated by the
recommendations. While patient autonomy is of the utmost procedure. While it is impossible to determine for each
importance, in reality the surgeon, must retain some level patient what outcome they may have, the surgeon must be
of paternalism, using the best interest standard, when prepared to discuss these possibilities with the patient and
the patient, through an act of trust, relinquishes further care for them after the operation.
decision making to the surgeon during the actual operation. With these many possibilities in mind, one can be left
It becomes the surgeon’s duty to balance the desire to help wondering what the definition of a good outcome for
the patient yet to prevent harm when treating and caring these patients might be. As noted above, the practice of
for the palliative patient. The ethical challenge for surgeons medicine is fraught with uncertainty leading to deficiencies
is to continue to honor their patients’ autonomy during the in prognostication so that no prediction model is perfect.
postoperative period by restoring as much shared decision At the same time when trying to relay our predictions to
making as possible. patients there is a lack of meaningful outcomes data to
Palliative procedures compose up to 20% of a surgical help shape this decision making process, in no small part
oncologist’s case load (26,43,44). While many definitions due to the great difficulty inherent to performing clinical
may exist to define a palliative procedure; in general, research with patients at the end of life. If the definition of
palliative procedures are those viewed as being performed a palliative procedure is based on symptom improvement
with the primary intention of improving or relieving a and not cure or even necessarily prolonging a patient’s life,
patient’s symptoms (pain, bleeding, nausea, obstruction, then outcome measures other than mortality are needed.
etc.) without the direct intention to cure or prolong life But the stark reality is that mortality and morbidity are
(26,45). When discussing a palliative procedure with a the outcomes that are recognized for all physicians and
patient this distinction regarding the primary goal of hospitals. It is these values that are reported when grading
symptom improvement and not cure must be emphasized. and ranking hospitals and individual physicians (46). Due
The surgeon must keep in mind that while a procedure to this fact, morbidity and mortality are often what is
is being performed for palliative intent with the above reported in patients undergoing a palliative procedure (47).
definition in mind, there can be many potential outcomes While understanding the likely morbidity and mortality of
(and unfortunately complications) for which the patient a procedure are important issues to discuss with a patient,
should be informed of, when making treatment decisions. there is still a lack of information on the success of achieving
For some patients undergoing an operative procedure patients’ goals, including symptom improvement. There
there is a chance of achieving the best ultimate outcome, needs to be more reporting and studies structured such that

© Annals of Translational Medicine. All rights reserved. atm.amegroups.com Ann Transl Med 2016;4(4):77
Annals of Translational Medicine, Vol 4, No 4 February 2016 Page 9 of 11

the outcomes measured include symptom improvement physicians can continue to uphold their duty to the patient
and quality of life scores. With this approach patients and to relieve their suffering and not abandon them; ensuring
their surgeons, together can utilize more pertinent data to that patients know they have the empathy of their physician
help them determine if the procedure being contemplated and that they will be present to shepherd them through this
will aid them in achieving their mutually constructed goals. challenging time (19,25).
With this there also would need to be a rethinking of
publically reported outcomes for this patient population,
Conclusions
with different goals for a palliative intervention come
different success measures (48). Sadly, Mr. Jones is not an uncommon patient seen
Lastly, it is important to consider the patient for whom by surgeons. He is also one of the most challenging
operative intervention may cause more harm than good. encountered in surgical practice. While in desperation
While surgeons strive to achieve the very best outcomes for he may express a strong desire to do anything to treat his
their patients there are times, unfortunately, when failure cancer, his surgeon must determine what treatment options
occurs. For patients contemplating a palliative procedure it are even available to him. In medicine a patient’s autonomy
is a time of unknowns, difficult decisions and a realization is the basis of decision making, but there remain many
of their own possible mortality. It can also be a time of other factors that the physician is responsible for in this
loneliness, fear and loss of control. And as seen in many process. The physician needs to ensure the patient truly
studies, patients are better able to face these challenges by understands, taking the time when needed to counsel and
the level of trust they place in their surgeons, confident listen to patients so that they can make informed decisions
that they will make the right decision and have their that correspond with their goals and values. At the same
best interests in mind (22,39,40,42). For surgeons whose time, there are many personal factors (e.g., commitment
first impulse may be to offer an operation, their greatest to the Hippocratic principles of beneficence and non-
professional challenge may be to acknowledge both to maleficence, surgeon autonomy in the operating room,
themselves and to their suffering patients when it is not non-abandonment) the surgeon faces that while not always
appropriate or in their patients’ best interests to offer a discussed with their patients impact the surgeon, especially
procedure. No surgeon or any other physician ever intends when contemplating surgical intervention in advanced illness.
to add to a patient’s suffering or recommend a therapy or For surgeons taking care of patients facing the prospect of a
procedure that in error hastens a patient’s death. At times palliative procedure or any surgical intervention at the end-
the best treatment may not be an operative intervention, of-life, there remains a lack of scientific data to guide decision
but being a support to the patient, someone they can rely making. Once a decision has been made, the surgeon retains
on during the course of their illness (19,23,25,49,50). Even a sense of responsibility to the patient to care for them not
though surgeons may feel unprepared for dealing with just during the operation, but afterwards. The unfortunate
the unique needs of patients at the end-of-life, patients reality for patients in these situations is the poor outcomes
want their surgeons to be present for them during this many face and even though surgeons’ strongest desires are
time (19,25,51,52). Stepping back from the familiar role to fix their patients, death cannot be ‘fixed’. Ultimately, one
of surgeon, the sworn enemy of death, to that of being must remember that often what patients near the end-of-life
a physician and fellow human being who witnesses and need most is for their physicians and surgeons to be sources
supports one’s patients as they encounter the inevitable of support during this time.
‘facts of life’ is extremely difficult, but has rewards that can
only be discovered in the doing. While we may struggle
Acknowledgements
as physicians with poor outcomes and our own limitations
we must always remember that the patient comes first. None.
We may not be able to offer the patient an operation, but
there remains the opportunity to care for the patient, to
Footnote
help relieve their symptoms by other means and to help to
improve the quality of the time they have remaining. By Conflicts of Interest: The authors have no conflicts of interest
utilizing the principles of palliative care the surgeon and all to declare.

© Annals of Translational Medicine. All rights reserved. atm.amegroups.com Ann Transl Med 2016;4(4):77
Page 10 of 11 Wancata and Hinshaw. Patient and surgeon autonomy in advanced illness

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Cite this article as: Wancata LM, Hinshaw DB. Rethinking

autonomy: decision making between patient and surgeon in
advanced illnesses. Ann Transl Med 2016;4(4):77. doi: 10.3978/
j.issn.2305-5839.2016.01.36

© Annals of Translational Medicine. All rights reserved. atm.amegroups.com Ann Transl Med 2016;4(4):77