My chair scrapes across the frayed carpet as I shuffle and readjust my posture. There is a slight hum in the background from the fluorescent lights. Do I keep my back straight or does this make me appear too tense? My pager vibrates incessantly, and I try not to mentally go over my growing to-do list, the pending orders I still need to place, the patients I need to reexamine, the endless documentation to write.

I am in the medical intensive care unit’s family conference room sitting across from my patient’s daughter and 2 siblings. Each flew in from different parts of the country over the past 2 days in response to my phone call telling them that their loved one was in critical condition and may not make it through the week.

Too often, I find myself in this situation, where a patient has exhausted all lines of therapy and I am sitting across from their family trying to decide when enough is enough. The brother drums his fingers nervously across the table, looking at me with a determined gaze. The sister appears dazed; dark circles underneath her eyes, tears glistening with a glimmer of hope. The daughter looks resigned, eyes fixed on the muted TV screen hanging on the wall behind me.

In a 2010 article, Atul Gawande, MD, MPH, wrote, “In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”

Physicians are taught how to deliver bad news. We initially learn about it in the abstract while sitting in a lecture hall in medical school. Then we observe residents and attendings do it. Then one day, you are the one in the white coat at the other end of the table, leading the family meeting, the term for the conversation with family members when we are expecting the worst. The “goals of care discussion” ultimately falls on you as an oncologist as you try to honor the oath to “do no harm” when salvage therapies are available and families want to exhaust every possibility.

A mentor once told me, “Never walk into a family meeting with the intent of pushing your own agenda.” I remind myself that what is a routine day for me is likely the worst day of their lives.

No matter how tired you are or how busy, you need to be present; the next 30 to 60 minutes demand your undivided attention. Consider your body language, and weigh your words carefully, knowing that this encounter will stay with them for a very long time. This meeting could be a source of solace or grief for years.

Before morning rounds, my resident said to me, “He is mechanically ventilated, on 3 vasopressors, with multiorgan failure. We doubt that there will be any meaningful neurological recovery in the setting of a catastrophic CVA [cerebrovascular accident].”

Those words mean very little to anyone outside the medical field. Instead I say to the family, “The infection has spread throughout his body. The machine is breathing for him, and he needs a lot of medications to help his heart pump blood to the rest of his body. He had a big stroke that has likely affected his ability to wake up or breathe on his own.”

They stare at me as I do my best to explain in simple terms how his metastatic cancer has left him in an immunocompromised state that is worsened by neutropenic adverse effects from his chemotherapy. I tell them that there has been one complication after another over the past few days.

“Do you think he can recover and get back to where he used to be?” his daughter asks. “Two weeks ago, he was playing with the grandchildren in the backyard.”

I pause. Research has shown that clinicians’ abilities to prognosticate outcome are often imprecise. We do what we can in attempting to map out a trajectory according to each individual’s progress, but there is always a chance for error.

I confess that, on occasion, I am haunted by decisions I’ve made. I wonder if, in the past, I’ve given up too soon.

“I don’t think he can,” I reply. “I don’t think that he can come off the breathing machine. And I am worried that he has too much brain damage.”

In 1 published study, more than 50% of caregivers reported regret about end-of-life care for a patient with cancer. Results from that study showed that better patient quality of death reduced the risk for bereavement regret.

 It falls on us to tell patients and their loved ones when our therapies are doing more harm than good.

My goal is to always remind the family that, ultimately, the burden of decision is not on them. Rather, they merely serve as the voice of their loved ones. “What do you think he would have said if he was sitting here with us?” I ask during a lull in our conversation.

“He was full of life and very proud of his independence. He wouldn’t have wanted this,” his brother says, his shoulders slumped. The family had talked about what my patient would want if the disease progressed and recovery became unlikely. He wanted to fight for as long as it made sense. It no longer did.

His sister and daughter nod in agreement, and we spend the next few minutes discussing further steps in terms of transitioning to comfort measures.

“Thank you for everything,” his daughter says quietly.

It is hard as a physician not to feel the sting of failure when you lose a patient. Yet, it serves as a reminder that at the end of the day, we uphold our oath by knowing when enough is enough, by ensuring that there is dignity, not only during life, but also in death.

Gawande A. Letting go: what should medicine do when it can’t save your life? 

. newyorker.com/magazine/2010/08/02/letting-go-2. Accessed December 24, 2018.

Garrido MM, Prigerson HG. The end-of-life experience: Modifiable predictors of caregivers’ bereavement adjustment. 

. 2014;120(6):918-925. doi: 10.1002/cncr.28495.

Articles

Do No Harm

My college roommate called on Thanksgiving to discuss his recent test results. He had been experiencing worsening headaches that weren’t going away. After the phone call, I broke into tears, knowing the road ahead. His mother, who would be heroic throughout the ordeal, texted me to confirm what she already knew: Her only son was going to die from a glioblastoma multiforme (GBM).

A few short months later, after 1 of his radiation sessions, he had a seizure. I received a call that he was admitted to the intensive care unit and intubated. The prognosis didn’t look good. His mother, tearful over the phone, kept repeating, “I’m so scared.”

As an oncology fellow, giving bad news can just beat you down. It’s been the most difficult transition from internal medicine. All throughout training, we do our best to help patients and their families. But there are more cases with happy, complete endings in internal medicine.

Caring for patients with cancer requires a change in perspective. The reward is the fight itself, the daily work. It’s the lives we’re able to save and the dignity we’re able to preserve in death. But the grief, I learned, is not limited to patients or their families. It is also an unaddressed part of the cancer continuum.

Over the 6 months following his diagnosis, I saw surgery, chemotherapy, and radiation treatments ravage my friend’s body. I spoon-fed him. I held back tears when I helped him to the bathroom at night. The last time I’d held a bowl for him to vomit, we were in our prime health, college students celebrating after a week of finals. Now, a few short years later, he was thin and had lost the ability to walk.

We tried to share some old stories, but he had trouble focusing. I couldn’t tell if it was fatigue or sadness that was pulling him down, but it deepened with each day. He told me that his favorite part of the day was being asleep—he was never sick in his dreams.

The disease was relentless. He no longer had the will to live. A few weeks later, I watched him drift into a coma in the intensive care unit where I rotated as a medical student. Days after that, I prayed silently at his funeral service.

I still keep in touch with his mother. She’s never regained her vigor, even though it’s been years since her son died. Every time our eyes connect, I can see her searching for him. I, too, feel a sense of guilt that is difficult to explain. Why was I so lucky to remain in good health? Should I ask how she is doing or not bring up her son? Do I tell her I miss him? Or will that make her relive a traumatic memory?

During a rotation 3 years later, I was discussing the care of a young patient with terminal GBM who was in the process of transitioning to hospice with some other residents. There were no viable treatment options left, and the care team muttered a series of negative commentaries on this young patient’s family and their reluctance to “give up” on life and “accept that he was dying.”

One of the more experienced oncologists had stopped by after clinic to see his admitted patients and shared a moment of compassion, surprising both the grumbling residents and the patient. “Sometimes,” he said, “there are things in life worse than dying.” I tried to comfort my patient’s mother while she broke down weeping. She was unable to hold her only son’s hand.

The senior oncologist was familiar with the grief and suffering that continues for all those who experience the loss of a loved one. He interrupted any arguments among the assembled doctors, helping us to imagine how the patient must have felt. And while I realize that situations will always arise that cause moral distress for providers, we must remember the uniqueness of the dying experience.

We cannot always choose who will be here with us to receive our love, but we can still choose to be loving, patient, and understanding. And this is how I remember those dying in front of me each day—that each story comes with a history of suffering, sacrifice, and pain.

The experience of losing my friend has affected how I approach patients’ family members as they’re watching a loved one die. It is easy for physicians to pontificate about what we think is best, but we often forget about the memories that extend beyond our interactions to their families and loved ones. There is no role for contention in a medical setting. Our care extends beyond our patients, to their wives, husbands, children, parents, and friends.

As a matter of good practice, I’ve begun writing letters to the families of patients I’ve cared for and lost. I share what I learned from caring for them, that it was certainly a privilege, and that it has prepared me to help a future patient suffering through a similar experience. I don’t know how the families take it, but for me it provides closure and an opportunity to recover a tangible piece of what was lost.

We all want to hold on to a few more moments with the people we love—we are never taught how to die. But always remember those you've have lost along the way. It humanizes the caregiver experience. I’ll forever miss my friend, but he has taught me so much about how to care for others.

Caring for patients with cancer requires a change in perspective. The reward is the fight itself, the daily work. It’s the lives we’re able to save and the dignity we’re able to preserve in death. But the grief is not limited to patients or their families. It is also an unaddressed part of the cancer continuum.

What Oncologists Can Learn From Personal Loss

Oncologists have traditionally been the major specialists delivering supportive care to patients with cancer. However, surgeons may be the first physicians to diagnose metastatic disease or cancer recurrence and are frequently consulted to assist in the care of terminally ill patients with cancer. In addition to providing timely referrals to palliative care specialists, having difficult end-of-life discussions with patients and families, and managing pain in the setting of advanced malignancy, there is still a role for surgery in certain palliative situations.

It is important for oncology surgeon trainees to learn to recognize when a palliative surgical procedure for an advanced malignancy might be appropriate, be familiar with the conduct of these operations, and understand the nuances of postoperative care and management of complications in this unique patient population. As stated by Hanna et al, “Palliative care is not so much a new specialty as a rediscovery of a tradition of surgery in which palliative surgical interventions that do not cure are once again acknowledged to be of tremendous benefit for those with disease.”

 Research, including randomized controlled trials and meta-analyses, has demonstrated that the addition of palliative care to oncology care improves symptom control and patient quality of life (QoL). There are even data which suggest that receipt of palliative care can decrease the rate of suicide in patients with high-risk lung cancer, which may be applicable to patients with gastric cancer, who are also at increased risk for suicide.

 QoL benefits have been shown to increase with earlier referral to palliative care, emphasizing the importance of training all physicians in the basic tenets and potential benefits of palliative care.

The American College of Surgeons recognizes the importance of palliative care, and the American Board of Surgery (ABS) mandates that “Certified general surgeons additionally must possess knowledge of the unique clinical needs of the following specific patient groups: Terminally ill patients, to include palliative care and pain management . . . and counseling and support for end-of-life decisions and care.” 4-6 Nonetheless, many surgeons continue to lack formal training in palliative surgical care.

A 2005 survey reported that 84% of surgeons did not receive any palliative care training in residency and 44% did not receive training during continuing medical education (CME).

 More recently, a 2018 study reported that 20% of surgeons received no palliative care education during residency, fellowship, or as part of CME while in practice despite the incorporation of palliative care into the Accreditation Council for Graduate Medical Education’s 6 competency domains.

In complicated patients with advanced malignancies, the potential palliative benefits of invasive procedures and operations must be balanced with the risks associated with surgery, particularly because complications could have profound effects on a patient’s QoL in a limited timeframe. Investigators conducting a recent study compared palliative care training between surgeons and medical physicians and analyzed the effects of this training on clinical decision making. They found that surgeons received significantly fewer hours of palliative care training than medical oncologists or pulmonary critical care physicians and that physicians without palliative care training were more likely to recommend major operative intervention.

A meta-analysis showed that surgeons are generally aware of the potential benefits of palliative care but lack knowledge about palliative care and are uncomfortable providing such care to their patients.9 Surgeons, like oncologists, have a responsibility to provide realistic data regarding anticipated treatment outcomes and long-term prognoses while preserving hope, but they often lack the training necessary to accomplish this goal.

Moreover, the benefits of palliative care training go beyond patients and their families. Such training has been shown to combat burnout in medical oncology fellows and has the potential to help mitigate symptoms of burnout in surgical trainees and attendings.

Efforts are increasing to include palliative care training during medical school and surgical residency, but it is even more important to include this training in fellowships in which physicians frequently care for patients with terminal diagnoses.

 Ninety-eight percent of respondents in 1 survey of surgical oncology and hepatobiliary fellows generally or completely agreed that learning to care for dying patients is important.

A recent study of surgical oncology and hepatopancreaticobiliary fellowship program directors found that only 60% of programs currently offer formal training in pain management, communication of bad news, or framing a conversation about disease prognosis.

 The availability of this type of training is likely to grow as more institutions recognize the importance of education in these aspects of oncology care. Successful training in palliative care will require integrating existing departmental and institutional palliative care resources with fellowship and CME curricula.

According to results from the same survey, many resources for increased and improved training already seem to be available.

 All of the responding programs reported having a palliative care consultation team, 42% have a surgical faculty member with clinical interest or expertise in palliative care, and 35% have a surgical faculty member with board certification in hospice and palliative medicine.

Lack of department support and a belief by curriculum program directors that fellows are uncomfortable dealing with death and dying patients—which could be due, at least in part, to the absence of training in the appropriate care of these patients&mdash;can act as barriers to the implementation of palliative care training. Furthermore, although the American Board of Surgery has a partnership with the American Board of Internal Medicine to provide certification in hospice and palliative medicine, not all surgeons who treat cancer will be able to complete an additional full year of training in palliative care.

The Society of Surgical Oncology and American Hepato-Pancreato-Biliary Association have recognized the value of palliative care training during fellowship, but these national leadership organizations can better integrate palliative care training into the defined curriculum objectives for fellows by developing short, intensive courses that can be provided at medical conferences and by advancing partnerships with existing committees on palliative care education.

Progress has been made in the presentation of palliative care research at prominent surgical meetings and the integration of patient-centered care goals in the general surgery residency curriculum objectives, but surgical departments need to further recognize that improved palliative care training, particularly for surgeons treating patients with cancer, has the potential to dramatically improve patient satisfaction and outcomes.

The ongoing development of CME related to palliative care is undeniably important for surgeons in practice. There is great potential to integrate palliative care training into the curriculum of surgical fellowships to better prepare the next generation of surgeons to practice evidence-based, multidisciplinary patient care to maximize patient QoL.

Hanna NN, Bellavance E, Keay T. Palliative surgical oncology. 

. 2011;91(2):343-353. doi: 10.1016/j.suc.2010.12.004.

Sullivan DR, Forsberg CW, Golden SE, Ganzini L, Dobscha SK, Slatore CG. Incidence of suicide and association with palliative care among patients with advanced lung cancer. 

. 2018;15(11):1357-1359. doi: 10.1513/AnnalsATS.201805-299RL.

Hui D, Hannon BL, Zimmerman C, Bruera E. Improving patient and caregiver outcomes in oncology: Team-based, timely, and targeted palliative care. 

. 2018;68(5):356-376. doi: 10.3322/caac.21490.

Brasel KJ, Weissman DE. Palliative care education for surgeons. 

Dunn GP. Surgery, palliative care, and the American College of Surgeons. 

. 2015;4(1):5-9. doi: 10.3978/j.issn.2224-5820.2015.01.03.

The American Board of Surgery: Specialty of General Surgery Defined. http://www.absurgery.org/default.jsp?aboutsurgerydefined. Accessed December 31, 2018.

Galante JM, Bowles TL, Khatri VP, Schneider PD, Goodnight JE Jr, Bold RJ. Experience and attitudes of surgeons toward palliation in cancer. 

Bateni SB, Canter RJ, Meyers FJ, Galante JM, Bold RJ. Palliative care training and decision-making for patients with advanced cancer: a comparison of surgeons and medical physicians. 

. 2018;164(1):77-85. doi: 10.1016/j.surg.2018.01.021.

Suwanabol PA, Kanters AE, Reichstein AC. Characterizing the role of U.S. surgeons in the provision of palliative care: a systematic review and mix-methods meta-synthesis. 

. 2018;55(4):1196-1215. doi: 10.1016/j.jpainsymman.2017.11.031.

Mougalian SS, Lessen DS, Levine RL, et al. Palliative care training and associations with burnout in oncology fellows. 

Amini A, Miura JT, Larrieux, et al. Palliative care training in surgical oncology and hepatobiliary fellowships: a national survey of the fellows. 

. 2015;22(6):1761-1767. doi: 10.1245/s10434-014-4226-0.

Larrieux G, Wachi BI, Miura JT, et al. Palliative care training in surgical oncology and hepatobiliary fellowships: a national survey of program directors. 

. 2015;22(suppl 3):S1181-S1186. doi: 10.1245/s10434-015-4805-8.

It is important for oncology surgeon trainees to learn to recognize when a palliative surgical procedure for an advanced malignancy might be appropriate, be familiar with the conduct of these operations, and understand the nuances of postoperative care and management of complications in this unique patient population.

Oncology Surgeons Need Better Training in Palliative Care

Immuno-oncology, the redirection of one's immune system to fight disease, is the single most important recent discovery, both in oncology and all of medicine. Immuno-oncology is the redirection of one’s own immune system to fight off cancer. It has produced remarkable clinical outcomes in patients who were previously given a death sentence.

Although only in early stages of development, there are a host of adverse events and failures associated with immuno-oncology. However, investigators are expanding on the work done by this year’s winners of the Nobel Prize in Physiology or Medicine, James P. Allison, PhD, and Tasuku Honjo, MD, PhD, at an extraordinarily rapid pace. We are discovering new targets for immunotherapy and learning how to use these agents in combination with other anticancer therapies.

As a medical oncologist in training, the most frequent question I get asked by peers outside of the medical field is when we will “cure” cancer. I am always astounded and disturbed by the simplicity of the question. Some cancers, such as testicular cancer and certain hematologic malignancies, are effectively curable already. But the biology of cancer development is so complex and individualized to each patient’s tumor that it is incredibly difficult to categorize even tumors of the same organ and histological subtype.

However, an incensed rant is not what the average layperson is looking to hear from an oncologist, so this is my not-so-simple answer to the “curing cancer” question.

First, most early stage cancers are curable simply by removing them. One may argue that there will be more early stage curable cancers and less advanced cancers as screening mechanisms improve. But it is nearly impossible to imagine a situation where we could successfully prevent all advanced cancers from ever developing simply through early detection.

Colon cancer screening will still require regular colonoscopies, although there is always the possibility of novel biomarkers. Breast cancer will still depend on mammography and/or MRI. Hematologic malignancies will be caught on routine blood tests, and screening CT scans will never be a financially realistic option to catch all lung and upper gastrointestinal cancers.

Therefore, the primary focus of the question of curing cancer centers on advancements in the treatment of metastatic cancer. During training, oncologists are taught to call all metastatic cancers incurable and to emphasize the point that all treatment for metastatic disease is palliative. Recent developments in targeted therapies and immunotherapy have challenged this treatment paradigm.

In the very best, albeit exceedingly rare, cases, tumors dissolve away with immunotherapy, leaving no radiographic or clinical evidence of metastatic cancer. More often, the targeted agents and immunotherapy treatments lead to a prolonged state of stable disease. How cancer frequently detail women with metastatic disease on targeted therapy living otherwise healthy and normal lives for 10 years or more. Many patients with metastatic melanoma and lung cancer previously treated with immunotherapy are also nearing or surpassing a decade of survival living with metastatic cancer. Although oncologists will never call these patients “cured,” they certainly do not fit the traditional mold or trajectory of patients with metastatic cancer.

As more and more of these patients accumulate through the improved therapies, this country will continue to collect a substantial population of patients with “chronic cancer.” These patients will represent an overwhelming majority of our cancer clinic population and represent a new normal for the meaning of and our treatment approach to metastatic cancer. Patients will always be horrified and distraught from the diagnosis of metastatic cancer, but rather than immediately planning their will and traveling the world before they die, they can be assured that the new normal could easily mean 10-plus years of quality living with a chronic disease.

An appropriate analogy is to compare cancer to the evolution of HIV. In the early stages of HIV, the diagnosis was a death sentence. As treatments dramatically improved, however, and we learned about the complex biology of HIV, we have still been unsuccessful in curing HIV. But we have managed to turn HIV into a chronic disease. The virus remains dormant in one’s cells just as cancer remains controlled in one’s organs or lymph nodes. Stopping antiretroviral therapy may result in disease relapse much as how stopping targeted therapies will result in disease progression.

The often-asked simple question of “curing” cancer has 1 simple answer: NO! We will not cure cancer; we will never cure cancer. We will not figure out every mechanism of resistance and every mutation that causes every type of cancer. And yet, advancements in targeted therapy and immunotherapy have led to a rapidly increasing number of patients with metastatic cancer becoming patients with chronic cancer. We will continue to see more and more metastatic cancers become chronic conditions, and the oncology world will be full of patients living with the chronic disease known as metastatic terminal cancer.

Advancements in targeted therapy and immunotherapy have led to a rapidly increasing number of patients with metastatic cancer becoming patients with chronic cancer. 

March 2019 | Oncology Fellows

Do No Harm

What Oncologists Can Learn From Personal Loss

Oncology Surgeons Need Better Training in Palliative Care

Metastatic Cancer Is a Chronic Condition