A 72-year-old, obese male patient and a poor operative candidate is diagnosed with esophageal carcinoma. He has multiple comorbidities and a past history of colon carcinoma. His staging workup, which included a colonoscopy, revealed recurrent colon carcinoma. Thus, we have a patient who we initially thought may not be fit enough for even one operation but now is looking at the prospect of two operations.
A 92-year-old female patient presents to the emergency room with abdominal pain whose workup, including a computed tomography scan, reveals pneumatosis, suggestive of ischemic bowel. She is emaciated, malnourished, dehydrated, and does not appear to be a good candidate for any operation, let alone an operation of this magnitude.
The families of both patients are very supportive, cooperative, and willing to do anything or everything to make their kin better.
Anything but a Clear Answer
How do we go about approaching these patients and their families about the various operative and nonoperative treatment options? How do we obtain consent for these major procedures, if an operative intervention is decided upon? How do we explain the risks and benefits of the proposed procedures/interventions? How do we explain that sometimes the best operation is actually none?
Adherence to the well-accepted principles of informed consent and shared decision-making do not guarantee ease of solution.1-3 These scenarios are very common, as most of us can attest from personal experiences, which usually consist of patient/family education about risks and benefits, but ultimately they weave through an agonizing labyrinth that leads to anything but a clear answer—while the families demand nothing short of a clear answer. We can only expect a rise in these situations due to the increasing number of aging baby boomers.4
Trust and Compassion
Years ago, the very fact that patients came to see the physician implied that they had given consent to be examined and treated. This was possible due to the bedrock of trust that the patient and the physician placed in their relationship. The physician’s emphasis was on patient care and nothing else, and the families placed their faith in the physician and no one else. This level of trust permitted compassion to flourish, which made it easier to deal with all the medical and nonmedical issues at hand.
Due to various factors, including risk of litigation and the consequent need for patients to be completely educated, we have shifted to the principles of informed consent and shared decision-making. Informed consent has ushered in a world where patients and families are supposed to be made as informed as the responsible physician, which should be considered an enormous benefit. Shared decision-making is supposed to ensure that both parties partake of all of the burdens equally.
In reality, we know very well that in the majority of situations, we share the information and the patient bears the burden, leaving them alone for decision-making. Similarly, somewhere along this path from “simple consent” to “informed consent,” we have noticed a phenomenon whereby the plethora of information provided erodes or, in some instances, substitutes for the true personal bond between the parties. When this happens, trust in the relationship can be one of the elements that is compromised. When trust is in short measure, compassion often suffers the same fate. A lack of compassion, the fundamental building block of the patient-physician relationship, can only make it more difficult for both parties.
Personal Touch
In discussions with the patient and family, we try to provide data from the recent literature, describing the landmark randomized controlled trials, phase III studies, levels of evidence or lack thereof, and so on, presuming that they comprehend it all. This makes us feel safe, since we feel like we have satisfied the legal requirements that are being constantly drummed into us by the risk management teams. Where does that leave the patient and families? Informed, maybe. Trusting, maybe. But have we achieved the level of compassion needed to make them feel comfortable and not alone in a difficult situation—not always.
Science can offer an everlasting fountain of information, but it does not usually instill compassion. Compassion comes from the personal touch, which most patients and families are very astute to detect when present. There is no science to teach how to obtain a “shared” and “informed” consent that is also “compassionate.” It is more of an art—that is, the art of human communication—whereby we communicate well enough to keep patients informed but also be honest enough to retain the personal side.
We try to keep the information simple so that they can understand what we are trying to convey. We stand as a bulwark for them to lean on in their difficult times. We make it known that this decision is not for “me” or “you” to make, but will be made together as “us,” on this unexpected journey that fate has destined us to travel together.
Useful Algorithm
After going through so many of these heartbreakingly painful experiences, I have come to realize that an algorithm along this pathway might be helpful. Depending on their individual style and comfort level, other physicians may prefer any of several other potential algorithms that could be used. But I have found this algorithm useful for my style of practice. This is not based on any randomized controlled trial or level I evidence, since the circle of compassion does not always fit into the rigid squares of science.
After completing the exam and disclosing the diagnosis and treatment options, it usually helps to tell patients that they fall into one of three groups regarding the need for intervention: group I needs the intervention, group II does not need the intervention, and group III represents those cases where we are not sure whether they need it or not. This is based on the willingness to admit to patients that we are not masters of all (or, in fact, any) medical ailments. It may well be that some or many of our patients fall into group III. But at least they will be aware of our honesty and realize where we all stand, thereby tempering their expectations.
Depending on which group they fall into, the next step would be to tell them about the risk-benefit stratification: For group I, benefits outweigh risks; for group II, risks outweigh benefits; and for group III, risks are equal to benefits. This is a simple algorithm that is very easy for almost everyone to understand.
The 92-year-old patient described at the beginning of this piece would fall into group I for treatment and between groups II and III for risk stratification, regardless of the final decision. This categorization would give the patient and family a measure of what lies ahead in terms they can clearly understand, which makes it easier to move on to the next phase.
Shared Decision
Next we tell them, this is a decision that will be made by “us”—not by “me” or “you.” This makes the patient and family realize that we are not dictating care and allows them to feel comfortable about truly being an integral part of the treatment plan, which is how it should always be. The role-playing is described as follows: my job is to give you all the medical information we have and be available for all your needs and questions, your job is to understand the situation, and our job is to share the burden, so as to reach a decision together that we all think is the most beneficial.
At this stage, some patients and families pose this difficult question: What would you do if it were you? I wish more patients asked this, but failing that, we should always try to volunteer an answer. This is the time to be utterly honest about what one thinks, although it may be difficult at times in the current legal environment. When you are honest, patients and families immediately realize it and are very appreciative of your sincerity.
This leads to the ideal physician-patient relationship based on compassion. Once compassion sets in, the ground is fertile for seeds of trust. Patients and families are more likely to trust your compassion, sincerity, and honesty than your medical knowledge. By this stage, the patient and family appreciate the compassion in our efforts to share their burden of decision-making. This is far better than drowning them with information alone, which may actually prevent them from finding the comfort of compassion.
Solemn Duty
The purpose of the consent process is to inform patients and families of the proposed treatment in detail. The provision of adequate or excessive information does not absolve us of the responsibility of remaining compassionate and having the willingness to share their burden. Patients come to us with fear of the disease, some trust, and the hope of obtaining answers. It is our solemn duty to not only dispel the fear, establish complete trust, and provide answers, but also to offer compassion. The ultimate consent should be not only informed, but compassionately informed. ■
Dr. Are is Associate Professor of Surgical Oncology, Vice Chair of Education, and Program Director of the General Surgery Residency Program at University of Nebraska Medical Center, Omaha.
Disclosure: Dr. Are reported no potential conflicts of interest.
References
1. Whitney SN, Holmes-Rovner M, Brody H, et al: Beyond shared decision making: An expanded typology of medical decisions. Med Decis Making 28:699-705, 2008.
2. Lantos J: Informed consent. The whole truth for patients? Cancer 1:2811-2815, 1993.
3. McGuire AL, McCullough LB, Weller SC, et al: Missed expectations? Physicians’ view of patients’ participation in medical decision-making. Med Care 43:466-470, 2005.
4. U.S. Census Bureau: Statistical abstract of the United States: 2008, Section 1: Population. Available at www.census.gov/prod/2007pubs/08abstract/pop.pdf. Accessed November 4, 2013.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO. Some details have been changed to protect patient privacy.
