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What are Doctors for?
All the passages below are taken from the book “The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life” By: MD, Ira Byock. It was published in 2012.
July 1 of the third year of medical school is the day the rubber hits the road, or rather, the day medical students hit the wards. On that day, they begin required rotations in internal medicine, surgery, pediatrics, obstetrics, and emergency medicine. After two years of studying anatomy, physiology, pharmacology, genetics, pathology, and other basic sciences, they don short white coats and start seeing patients. In so doing, students enter a new phase of training, an apprenticeship with roots deep in the antiquity of the profession.
Modern medicine is steeped in science, but still taught in the tradition of a craft within a guild community. In academic medical centers, third-year students occupy the first rung of the hierarchy of junior apprentice, journeyman, and master. Medical students are part observers, part scribes, and part “scut puppies.” They run the errands, fill out the lab requests, and do routine chores that, well, someone has to do. They are usually happy to have scut work— medicalese for “some common unfinished tasks”— to do to feel useful. In return, students get to spend in-depth time with patients, taking histories, sometimes drawing blood for lab tests or assisting in bedside procedures, sometimes just visiting and supporting a patient. In addition, they get to be part of serious discussions among members of the team— their interns, residents, and attending physicians— about how best to care for seriously ill patients.
Medical students eagerly await their third year because, as anyone who has been through it knows, that is when you start to become a real doctor. You have been in school since age five and imagining being a doctor at least since college, and perhaps a lot longer. For two years of medical school, students have been relegated to classrooms and labs, or to being strictly observers of clinical care. Now, the pace of training quickens and in their third year medical students tend to grow up fast. The third year is at once exciting and scary; suddenly the things you have been reading about and watching, you are actually doing with— or to —real people. But students also feel the privilege— an earned privilege— of being present and involved in real medical care.
Medical students tend to look up to interns like they would big brothers and sisters. For interns— who were, themselves, medical students until July 1— taking on a teaching role can take some getting used to. Having graduated medical school, interns are doctors, but they are still a long way from being ready to practice independently. Interns are on a steep learning curve. While taking responsibility for patients’ care, they closely rely upon— and if they are wise, adhere to— guidance from the residents and fellows who are at a stage in training to safely know what they are doing. Atop the professional ladder at academic medical centers are the faculty physicians: assistant, associate, and full professors. They occupy the position of masters of the guild and provide firm direction, oversight, and teaching.
By and large, it is a benevolent community and hierarchy.
Well-functioning teams are collegial, each person pulling his or her own weight and supporting one another in getting work done, dealing with urgencies and mishaps, and picking up slack when necessary. During my own third- and fourth-year clinical rotations, I was often bone tired, but I never felt oppressed. As a medical student and later as an intern, my respect for senior residents and attending physicians bordered on awe. They seemed to know everything and I was grateful they invested time in teaching me and very glad to have them look over my shoulder. If all this sounds romantic, it is merely a reflection of how passionately I wanted to learn to be a doctor. My clinical training was exhilarating— and I loved it— but it was also exhausting and sobering. I think of it as postdoctoral training in devastating medical and social problems and human suffering. Through it all, my older colleagues and faculty physicians taught and modeled good practice for me and enabled me to become a real doctor.
Medical students’ passion for learning as much as they possibly can persists to the present day. And through all the unprecedented challenges to medical practice, generosity toward junior members of our profession pervades medical training.
Today, I am an attending physician in my fourth decade of clinical practice, ultimately responsible for the quality of care delivered by the team I supervise. Concomitantly, in my role as a faculty physician at a teaching hospital, I am responsible for furthering the education and professional development of each clinician-in-training on the team, and I strive to perpetuate this age-old spirit of generous collegiality. Something else changes abruptly in the third year of medical school. Students who have worked, studied— and played— intensively together for two years, are suddenly flung apart. Classmates and good friends one has seen nearly every day for two years are now dispersed across myriad rotations, clinical teams, and several hospitals. It can be jarring.
Each November, Dartmouth Medical School brings third-year students back together for two weeks for a seminar class called ICE, which stands for Integrated Clinical Experience. The ICE course delves into crosscutting clinical and ethical topics that the preceding third-year class nominated for inclusion.
For several years running, palliative and end-of-life care have been among the topics chosen by students. Each November members of our team— one or more physicians, usually with a nurse practitioner, chaplain, or social worker— have been accorded four hours to discuss how we approach caring for people whom we cannot cure.
Four hours may not seem like much for so important a topic. It’s not, but curriculum time is a precious commodity and those few hours are roughly a fifth of the total hours of course work that medical students have on these topics. So our team is determined to use the time well.
My two-hour session this day would challenge the students to explore how we can best serve seriously ill people and their families— and invite them to continue thinking deeply about these issues as they continue their training and enter their practices. The following day a physician colleague and social worker from our team would engage the students in practicing skills of communicating bad news and discussing with patients what treatments they would want, or not want, in life-threatening situations.
ICE is usually held in the medical school’s Chilcott Auditorium, which fits the seventy-five or eighty students who are able to attend. (Inevitably a few are away on off-cycle clinical rotations.) Chilcott is a comfortable setting for lectures; acoustics and audiovisual equipment are fine, but it is less than ideal for group discussions. The auditorium is a terraced arc of seats facing down and center, where instructors stand at a podium or pace before a whiteboard, looking up at students who, these days, tend to stare at their laptops rather than at the person teaching. It can be hard to spark a genuine conversation.
This November’s ICE class was scheduled for one p.m. and it was nearly eight minutes passed the hour before people took seats and began to settle. Knowing that our session would start after lunch, I planned to keep the lights on and the PowerPoint projector off, in hopes of keeping the students engaged.
I introduced myself briefly; most students knew me from a couple of lectures I gave during their first- and second-year courses. Additionally, at least a quarter of the class had already interacted with me or our team during clinical rotations at DHMC.
“I want to start by thanking you for including this topic in the ICE course again this year. Technically, my thanks belong to the senior class who chose this topic on your behalf. I am grateful and hope to earn your vote for these subjects to be included again next year.
“Secondly, I want to apologize to you. To this point in your training, we have not been preparing you as well as we should to care for seriously ill and dying patients, nor for the families who love, care, and worry about these patients day in and day out. I believe we have been setting you up to fail. It is not right and I am sorry.”
Even the students who had not quite settled in, and those who had been quickly checking their e-mails, stopped and looked up.
“I speak solely for myself as one member of the faculty— and my faculty colleagues may take exception to my belief. So, the apology is my own. We have been gradually improving our curriculum at Dartmouth Medical School, but change has been incremental and slow in coming. To be fair, our school is hardly alone in underemphasizing topics and skills related to life-limiting conditions. I often ask the residents I work with— who as you know come to DHMC from a wide variety of medical schools across the country, and other countries— about their education in palliative aspects of care. Most feel they have not been adequately taught basic skills: How to give the bad news to a patient that her cancer has progressed, or tell a family a loved one has died. How to introduce hospice care to a patient and family. How to explain CPR in a way people can readily understand. Interns and residents may recall having one lecture on pain management and another on the ethics of stopping life-prolonging treatments. They don’t feel competent to treat a patient’s cancer-caused pain, nor are they confident in guiding decisions that allow for a patient to die naturally, or even how to encourage people to complete advance directives. Only a few say that they had good training and mentoring in these skills. (It is a mark of national progress that at least a few do.)
“Just for interest, let’s take a quick straw poll of your collective plans for practice. How many people here plan to provide prenatal care and deliver babies in their practice?”
Three students raised their hands.
“How many plan to care for newborns?”
Four more hands went up.
“Thanks. And how many of you plan to specialize in one of the following: family medicine, internal medicine, cardiology, nephrology, neurology, oncology, pulmonology, anesthesiology, infectious disease, interventional radiology, radiation oncology, critical care, general surgery, or oncologic, thoracic, cardiovascular, or neurosurgery?”
All but eight hands went up.
“To those who just raised their hands, in each of your specialties a significant portion of the patients you will treat will be elderly. Many will have life-threatening conditions. Without a doubt, it will be common in your practices to examine, treat, and counsel people who go on to die. Whether you intend to or not, you will be providing end-of-life care.”
No one was looking at laptops.
“Think about the hours of course work you have had on embryology, reproductive medicine, prenatal care, labor and delivery, and neonatal care— and about the four- to six-week rotations in obstetrics and pediatrics that are required in this third year. Now consider how many hours of required classes and clinical rotation are devoted to topics related to dying, caregiving, and grief?
“In this regard, as in most medical schools, our curriculum seems well suited to the 1940s and ’50s when most doctors delivered babies and routinely took care of infants.
“Times have changed and health care has become highly specialized. These days every doctor who plans to care for pregnant women or deliver babies has to complete a residency in either obstetrics or family medicine.
“And last time I checked, only 50 percent of the population is at risk of having an obstetrical experience in their lifetimes, while epidemiological studies continue to find that 100 percent of Americans eventually die.”
That generated a laugh.
“Most medical schools do not require hospice or palliative care rotations, many do not even offer them as electives. Medical schools generally provide a lecture or two on pain management and discuss the ethics of end-of-life decisions and palliative and end-of-life topics within other courses. The total course content of these topics probably amounts to fifteen to twenty-five hours over the four years of medical school curriculum.”
I glanced at my watch, smiled drily, and said, “So, in the three hours and forty-seven minutes remaining to us, I am going to try to make up for these deficiencies.”
All kidding aside, I had ambitious goals for my brief time with these students.
“First and foremost, I hope to give you a sense that caring well for people who are dying is not merely a responsibility— and it is— but also offers deeply meaningful therapeutic opportunities. I hope to provide you with a framework for being the best doctors you can be for patients who are seriously ill and for their families. My goal is to equip you to evaluate all you will see and hear in the years ahead about care for people through the end of life; to critically evaluate the science and clinical guidelines you will read in journals and learn in presentations, as well as the interactions and practice patterns of your teachers and colleagues that you will witness.
“If you understand what really excellent care through the end of life looks and feels like— to your patients and as their physician— you will be able to distinguish not just good care from bad care but what is truly first-rate from what is merely mediocre. With this discernment, you can continue learning from it all.”
I paused. “That should suffice for the afternoon, eh?
“Okay, let’s begin. Now that you have had a few months of concentrated clinical experience under your belts, I’d like to pose a simple question for discussion: What are doctors for?”
I picked up a marker and walked to the whiteboard in the front of the room while looking around the auditorium. No one said anything for the first ten or fifteen seconds.
“I can start, if you’d like.” That was enough to break the ice.
“Saving lives,” a small young woman in the back of the lecture hall said in a strong voice.
“Good,” I replied. “Pretty much the prime directive, isn’t it? We are here to save lives. No doubt about it. Would it be fair to say, as an extension of this principle, that doctors are for diagnosing and treating the things that ail us?”
I paused and panned the room. No one objected and several nodded in agreement.
“For most people, most of the time, our job description is to save life— cure disease, fix serious injuries, mend broken organs and limbs— and restore people to physical health.
“How about when we are unable to cure people? When a patient has a life-limiting illness or injury, what are doctors for, then?”
“We can treat pain,” one student spoke out.
“Absolutely.” I wrote TREATING PAIN on the whiteboard and said, “If you’ll allow me, I would expand this bullet to say, TREATING PAIN & ALLEVIATING SUFFERING. We still can’t cure many diseases, including many cancers, but we can always diminish pain and alleviate suffering.
“We may not be able to completely relieve a person’s suffering— not all physical discomfort and certainly not all emotional and existential distress can be resolved— but we can always make a person’s distress at least a little less severe, a little easier for a patient to tolerate.”
I planned to spend about a half hour defining categories and writing bullet points on the whiteboard as the students explored various ways doctors can help people living with incurable conditions and facing the end of life. I was about to move on when a woman in the second row with short, red hair and an expression that telegraphed consternation raised her hand.
As I acknowledged her, she said, “Dr. Byock, I hear what you are saying, but I don’t think pain is all that well treated. I’ve had two rotations— surgery and neurology— in which I have seen patients whose pain wasn’t controlled at all. One woman had metastatic lung cancer and had emergency neurosurgery to drain an intracerebral hemorrhage. Our team saw her at least twice every day. She had terrible back and hip pain from her cancer— and had been taking high doses of pain medicine before her bleed— but they would only give her Tylenol. She asked for more pain medication every time I saw her. One time she squeezed my hand and said, ‘Why won’t you help me?’ It was awful. I told our resident and he spoke with the attending on rounds. But we were told, ‘We have to follow her mental status.’ ”
I sighed, reminding myself that examples of what not to do can be as valuable in teaching as examples to emulate.
“Obviously, I do not know the details of this case beyond what you have just described. I don’t want to second-guess or unfairly criticize my fellow faculty physicians. However, I can say that it is not necessary to withhold pain medications in order to accurately follow people’s mental status. If that is what that attending physician believes, I strongly disagree. Particularly in older patients, uncontrolled pain can cause mental confusion and even florid delirium. In one study of patients undergoing hip surgery, elders without dementia who were in severe pain after surgery had nine times the risk of becoming delirious, compared to patients whose pain was properly treated with morphine. The take-home lesson is that when pain is carefully treated and closely monitored, people’s minds usually remain clear.
“There is a famous aphorism in medicine: ‘To cure sometimes, to relieve often, to comfort always.’ ‘To comfort always’ does not apply only to patients with advanced disease. When I was in medical school, we were taught that it was unfortunate, but necessary, for patients being evaluated for possible appendicitis or gallbladder attack to go without pain treatment in order for physicians to accurately monitor sequential abdominal examinations. Since then, surgery and emergency medicine studies have proven that that is not true. Patients with a hotly inflamed gallbladder or appendix still tightened their abdominal muscles to guard from a physician’s examining hand, and patients with peritonitis still have ‘rebound tenderness’ when a doctor palpates and releases pressure on their abdomens. By being more comfortable, patients are better able to cooperate with doctors, who are, in turn, better able to perform adequate physical examinations. Simply put, allowing someone to be in severe pain is not good medicine.”
I continued, wanting to provide tangible support to the student who asked the question and to any others who have had— or will have— similar experiences.
“In contemporary medical practice if the steps at managing pain or other sources of suffering are not successful, there are always additional things we can try. During your rotations at DHMC, if pain is particularly difficult to control, you can always call the Acute Pain Service for help. Or if the patient has an advanced illness and either pain or a constellation of symptoms that is complex, our Palliative Care Service team is available to answer questions or see a patient in consultation at any time.”
I paused before making the next point.
“I understand that the attending physician in charge has to allow you or our team to formally request a consultation from the Pain Service or Palliative Care, but the large majority of them will. If not, enlist the help of the patient’s nurses. You have probably already picked up on a timeless truth that medical students and interns know: when a direct approach fails, nurses can almost always get the consultation.”
A few students chuckled and more than a few heads nodded in agreement.
Turning back to the student who asked the question, I said, “I appreciate the example; I wish I could say it was rare. Throughout the rest of your training you will learn from your teachers’ positive examples, and their occasional shortcomings. As I said, my purpose today is to sharpen your discernment. It is an important part of lifelong learning.”
I scanned the room. People seemed ready to proceed.
“Okay, let’s move on. What else are doctors for?”
A lanky male student on my right, seated near the back of the room, raised his hand and spoke. “Doctors give people information about their health and about treatments for their medical problems.”
“Right. We give information. A key reason that we give information is to teach people about their health. As you probably know, the Latin root of the word ‘doctor’ is docere, meaning ‘to teach.’
“We give people information about their medical condition and treatment options. We provide and make sense of technical information in the process of helping people make critical decisions. The term and concept in vogue these days is shared decision-making— the process by which doctors and patients work together in coming to sound decisions. We also can give patients and their families information about their prognoses, their chances for recovery, and what their capacities and needs will likely be in the future.
“Our role as a key source of reliable information and teaching continues through the end of life. As people’s conditions change, they continually need pertinent information about their condition and treatments, and help with learning how to take good care of themselves.”
The conversation continued for a while. Students asked questions about differences in communicating with patients with various diagnoses— cancer, heart failure, liver failure, and ALS (amyotrophic lateral sclerosis). We talked about the ways that quality of life, risks, and potential benefits of treatments all weigh into making sound decisions.
I felt we were making good use of our time, but if I was going to help these young doctors-to-be become all they could be, I needed to sail into deeper water.
“Is ending people’s lives one of the things that doctors are for?”
I paused again and looked around the room. A couple of people’s heads nodded, two or three shook a “no,” and a few cocked one ear in my direction, as if listening for an echo of the question. No student spoke.
“I’m not going to ask for a show of hands. I assume there are people in the room on both sides of the assisted suicide debate. Some of you will practice in states in which physician-assisted suicide is legal, or will become legal.
“Today’s discussion is not intended to be political, though we can’t ignore the fact that this political and social controversy can impact our clinical practice. In full disclosure, I have written and spoken against bills and referendums to make physician-assisted suicide legal. And I remain firmly opposed. However, several years ago I came to the conclusion that both sides— pro and con— are wrong and dropped out of the fight. My purpose today is to stay focused on clinical principles that can help you become the best physicians you can be and help you give people who are seriously ill the best care possible.”
The room was still. But the students were clearly engaged. So far, so good. I’d budgeted about twenty-five minutes for this discussion. I am keenly aware that the issue of assisted suicide is not just a hot political topic but a source of confusion and doubt in many physicians’ minds. Many lay people and more than a few doctors conflate intensive management of suffering or stopping life-sustaining treatments with euthanasia. It was worth investing the time to draw clear distinctions.
“It’s worth considering another question. Is it necessary to end some dying people’s lives in order to relieve their suffering?”
They recognized my question to be rhetorical: I was the only gray-haired, practicing physician in the room.
“I can say this: I have never willfully allowed a patient to die suffering. And in over thirty years of practice in hospice and palliative care, I have never found it necessary to euthanize a patient.”
I spoke in an unhurried manner so that the students could consider, absorb, or reject my assertions.
“To be sure, there have been plenty of patients whom I made sleepy with medications and some I rendered fully unconscious to ensure they were not suffering as they died. Some people ask, ‘Well, what’s the difference between that and euthanasia?’ Most concretely, the difference is that I have never injected potassium chloride to stop someone’s heart or given curare to stop a person’s breathing and cause a person’s death.”
I explained the critical clinical and moral distinction between killing a patient and letting the person die. Except in the midst of acute rescue efforts for casualties at the scene of an accident, or performing CPR on a previously vital victim of a sudden cardiac arrest, there comes a time in every life when it is acceptable to let a person die.
“Most people’s pain, air hunger, or anxious distress can be alleviated with medications that are, or will become, familiar to you: opioids, benzodiazepines, and the phenothiazine family of drugs. With good care, most people are relatively comfortable and interactive until the last days and sometimes hours of life. It would be great if it were possible to make every patient comfortable and alert. Research into novel pain treatments and medications may one day make this a reality. For now, sometimes being drowsy is the cost of being comfortable.
“Many of the patients and families we care for may not clearly distinguish letting die from ending life. On occasion a relative of an ICU patient who is unresponsive and having his or her life maintained has quietly confided to me, ‘We put dogs out of their misery’ or ‘This is why I believe in Dr. Kevorkian.’ I recognize the grief in such comments, yet am struck by a certain irony. It is true that we sometimes euthanize sick dogs and cats, but primarily we do not put them on ventilators or kidney dialysis machines and infuse vasopressor medications into them in ICUs. Instead, we allow them to die naturally.
“The people Jack Kevorkian euthanized were not being kept alive moment-to-moment by medical machines. If they had been, their doctors could have turned them off.
“The point I want to make is this: Alleviating suffering and eliminating the sufferer are very different acts.”
Doctors need to understand these distinctions. There are no clinical or ethical restrictions to alleviating pain when someone is dying. The established ethical principle of double effect allows for an unintended harm— including a person’s death— to occur while striving toward a good. High-risk surgery may be performed in the hope of saving a person’s life, or high-dose pain and sedative medications administered to relieve a person’s suffering. In neither situation does a patient’s death constitute killing; acting with the intention of shortening a person’s life does.
So much of medicine carries caveats, exceptions, and ambiguities. Particularly in the realm we were discussing, I wanted to give the students simple, unambiguous guidelines whenever possible.
“I really meant what I said earlier about alleviating suffering.” I pumped my thumb in the direction of the TREATING PAIN & ALLEVIATING SUFFERING bullet on the whiteboard.
“We will encounter people whose lives we cannot save— diseases we cannot cure and injuries too grave to repair— but we can always make dying people more comfortable. As the priorities of a patient’s care shifts from quantity of life to quality of life, comfort becomes paramount. When someone is dying, any concerns about long-term side effects of medications or addiction to narcotic pain relievers are unwarranted.”
Okay. Now that I had led the class into deep water, it was time to throw them a line.
“If all of this seems overwhelmingly complex or daunting right now, please don’t worry. As long as you have the interest, you will find caring for people through the end of life to be a natural extension of the knowledge and clinical skills you are already developing. Excellent care for people who are dying needs to be meticulous, methodical, proactive, and ongoing with regard to managing symptoms, conversations, and planning, but it is usually fairly straightforward.
“When specialists are needed, these days there are palliative care consultants to call in. As you go through your training, remember this: there is no ethical, physiologic, or pharmacologic reason today for any person to die in agony. On the contrary, allowing someone to die suffering is medically and ethically wrong.”
A student on the left side of the room raised his hand, hesitated, and then started to speak. “I have read and thought a lot about these issues. I agree with most of what you have said, but I guess I feel that dying people have a right to do what they want with their own bodies.”
“This is partially true,” I said. “I appreciate your comment. A number of ethics commissions, including the Presidential Commission for the Study of Bioethical Issues, and seminal court decisions, have said that people have a right to refuse any medical treatments that are offered and must be given a chance to decide among legitimate and available treatments for their conditions. If they are of sound mind— meaning have ‘decision-making capacity’— people can refuse antibiotics for pneumonia or urinary sepsis, so-called ‘feeding tubes,’ or even insulin if they are diabetic, knowing full well that they will die without treatment.
“But the commissions, blue-ribbon panels, and the courts have also said that people do not have a right to receive any treatments they desire. The responsibility for determining what treatment options are indicated and presenting those options to patients rests firmly with physicians. A patient might dearly want a heart transplant or a stem cell transplant for leukemia, but be ineligible because of coexisting conditions. A patient with widely metastatic melanoma may want neurosurgery for a cerebral lesion, but if the consulting neurosurgeon deems that the procedure is not in the patient’s best interest, she can refuse to perform the operation. Similarly, physicians need not perform CPR on a patient if the procedure would be literally futile.
“Consistent with this principle, most courts, legislatures, and ethics commissions have concluded that people do not have the authority to demand and receive from doctors legal medications intended to end their lives. But it feels incomplete to respond to your question solely from the perspective of rights. I want to refocus on the question I first posed: What are doctors for?
“Even if society deems it legal— for purposes of criminal liability and life insurance— for dying people to commit suicide, the medical profession believes— as do I— that intentionally ending a person’s life is beyond the scope of medicine.”
I explained that although I remain firmly opposed to society legalizing assistance with suicide, I believe it would be less erosive to physicians’ roles and patients’ trust if proponents kept doctors out of the process. After all, our expertise is needed only to certify that a person who desires the means for ending his or her life actually has a terminal condition. The doses of drugs used to hasten death do not vary by age or weight. Instead of a doctor’s prescription, responsibility for issuing permission to a certified patient to purchase a packet of lethal medications could be assigned to another civic authority, such as the county attorney or justice of the peace. I’d still vote against a referendum on such a policy, but compared to physician-assisted suicide, this approach would mitigate damage to the social architecture. It would leave doctors free to focus on alleviating suffering and improving quality of patients’ lives.
“I worry about the social and cultural consequences of doctors ending lives,” I concluded.
“I understand,” he said. “I am going to have to think about this more.”
“Very well. Of course, you have the right— and, for what it’s worth, my permission— to disagree. Thanks again for the comment,” I replied.
“We still have a few minutes before we take a break. We are already deep into the topic of physician-assisted suicide. I hadn’t planned to, but if you are willing, let me take this topic a couple of steps further in the short time remaining.”
Scanning the auditorium, there was no objection and more than a few nods of agreement.
“First and foremost: from a clinical perspective, any serious request from a patient for help in ending his or her life must be seen as a red flag that signals either that a patient is suffering or fears uncontrollable future suffering. ‘Doctor, will you help me die?’ should be considered an impending medical emergency until proven otherwise, much like a patient who says, ‘Doctor, I have a squeezing pain, right here,’ ” I said, holding my clenched right fist over my heart. “Until you are a senior resident, such statements will always require evaluation by someone more experienced. Not all such requests turn out to be emergencies. ‘Doctor, will you help me die?’ may be the way a person asks for assurance that she will not be in severe pain as she dies— perhaps like her mother or father in the last hours of life. At very least, such questions are opportunities to listen and respond to a person’s worst fears.”
I explained that in their next year’s seminar course we would discuss ways of responding to such requests that can reassure patients, build trust, and be therapeutically effective. And I encouraged them to consider taking an elective rotation with our Palliative Care Service during their fourth year.
“A moment ago, I said there was a distinction between suicide and assisted suicide. In my experience, seriously ill people who are hurting and scared usually already have the means to end their lives. People with cancer or heart, liver, lung, or kidney disease usually have cabinets or drawers full of prescription medications for pain, sleep, or anxiety that, when taken in combination with alcohol, will provide a swift and painless exit. Websites provide information on ways to do the job with tools as available as a car in a garage.
“People who feel helpless and hopeless frequently have the means, but may be asking for their doctor’s prescription to find out whether their doctor agrees they are helpless and without hope. From a therapeutic perspective, doctors must steadfastly stand for helping and hoping for a better quality of life.”
I wanted to peel the onion of this topic another layer and invite them to consider the psychology of a physician’s decision to assist or not to assist a terminally ill patient in ending his or her life.
“When a doctor cannot think of anything else to do for someone who is suffering, assisted suicide or even euthanasia may look like the right thing to do.
“You probably already have had a taste of how a doctor’s emotional state might influence this. If the doctor has had a long, hard stretch of being on call or a series of difficult cases, it is easy to understand how his or her own distress might contribute to a sense of feeling overwhelmed and constrain effective counseling or identification of viable therapeutic options.
“In fact, the decision to assist in preempting death may respond to the doctor’s suffering as much as to the patient’s fears or suffering. Proponents of legalizing physician-assisted suicide object when I say this, but I mean it with all humility.
“Dr. Robert Twycross, a venerable British physician and professor of palliative medicine at Oxford University, has written that ‘a doctor who has never been tempted to kill a patient probably has had limited clinical experience or is not able to empathize with those who suffer.’
“I have met many patients over the years that I thought would be better off if they were to die soon. I have been tempted to end more than one suffering person’s life. That is precisely why our profession has developed formal standards of practice and statements of ethical practice— to remind us that such acts are wrong.”
Again I paused and looked around the auditorium. This key point warranted the time.
“We are just human beings bringing special expertise to bear to serve others. We have feelings and are prone to stress and exhaustion, and even burnout. That is one reason why we work in teams. And that is why these days, in all academic centers and most large hospitals, we have palliative medicine specialists working within palliative care teams to call on for help. Effectively treating complex pain and counseling people with profound emotional suffering is difficult, time- and labor-intensive, and emotionally draining. Even the best doctors benefit from the perspective, knowledge, and skills of nurses, social workers, chaplains, pharmacists, and others.
“In case you haven’t yet noticed, doctors often get very attached to their patients. Truth be told, doctors often love patients. The warm positive regard that doctors feel for patients is wholesome and ethical. Codes of conduct and statements of professional practice serve as external checks when our feelings— pain or elation— threaten to sway our sound judgment.
“Like the cement foundation and I beams of a building, professional guidelines maintain the structural integrity of our profession through difficult times— including wars, economic depressions, natural disasters, and other social turmoil. From earliest antiquity, one professional boundary has been clear: doctors must not intentionally kill patients. This boundary is valid today, even in states and countries where the practice is legal. Our profession has consistently asserted other boundaries, sometimes against political pressures. It is, for instance, legal, but firmly unethical, for doctors to perform state-sanctioned executions. Even in times of war, doctors must refrain from using medical skills to inflict pain on prisoners. Right?”
Again, as I panned the hall, students were taking this in, no doubt deciding how much of what I said they agreed or disagreed with. A number of students were leaning forward on folded arms or elbow. Several heads bobbed in agreement.
“We live in a world in which resources are limited and suffering abounds, in which comprehensive care is costly and hard to come by and lethal prescriptions are cheap. Even today, when many emergency departments and hospitals are filled to overflowing with people who have fallen through our frayed social safety net, I worry “self-deliverance” is another expedient way for society to avoid the costs and the messy complexities of actually providing excellent medical treatments along with authentic person- and family-centered care.
“Whether you are in favor of legalizing physician-assisted suicide or not— and whether assisting in suicide is legal where you practice or not— let’s not allow our profession to become society’s answer to suffering and the high costs of dying.
“Having formal professional guidelines that clearly define what can and cannot be done can be liberating, rather than confining, in one’s practice. I have never had to abandon a patient who wanted to die at a time of his or her own choosing. By clarifying that I cannot and will not write lethal prescriptions, I have been able to avoid entangled negotiations, while unequivocally affirming my commitment to treat pain, alleviate suffering, and improve the quality of the person’s life.
“Okay. Once again, please feel free to disagree. As the song goes, ‘you take what you need and leave the rest.’
“Let’s break for ten minutes. When we come back I promise to lighten things up a bit and talk about imagination, friendship, and the many things we can do for people facing the end of life.”
When we reconvened, I began again. “To this point, our exploration of what doctors are for in serving people who are seriously ill has been pretty ponderous and heavy. At least some of you must be wondering why the heck I would choose to practice palliative medicine. In fact, caring for people through late stages of illness and through the end of their lives is the most satisfying and personally rewarding practice I have ever had.
“Doctors have existed in every society and culture to accompany patients on their journey through illness and death. Doctors have special skills and expertise to bring to the relationship. Whatever else I cannot do therapeutically, I can skillfully, confidently accompany the person who is ill for at least part of his or her journey.
“Although I am wary of overstretching metaphors, thinking of illness as an unwanted journey has been a useful way for me to explain my relationship to patients and their families. I may only see a patient and family for a short phase of their experience with illness but, like a captain of a passenger liner or the pilot of a plane, for the time they are in my charge my goal is to provide the best service possible.
“All the categorical things that doctors are for that we mentioned earlier fit nicely within this illness-as-journey concept. If you are a doctor accompanying someone on a journey— perhaps backpacking or rafting— and the person becomes hurt and is in pain, of course you are going to do what you can to make the person comfortable. If your companion develops a medical problem with which you are skilled in managing, naturally you would offer your advice and assistance.
“In thinking about the process of dying as a metaphorical journey, additional doctorly responsibilities and therapeutic opportunities come into view. Doctors can provide guidance for what lies ahead. On any journey with another person, if you know that a path widens and offers safe passage, naturally you are going to suggest taking it. If, however, you have previously traveled a road and know it becomes impassable a few miles ahead, naturally you are going to advise that you and your companion take a different route.
“Pediatricians refer to ‘anticipatory guidance’ in teaching parents of young infants what to expect and prepare for in the days, weeks, and months ahead. The concept applies well to the end of life. People commonly feel unprepared and at a loss in knowing how to get through this difficult, frightening, and often treacherous stretch in their and their family’s lives. Doctors come to know where the hazards lie, what to watch out for, what to do before people are too much further along. We come to know how people can best prepare for these difficult, unwanted, yet common life events.”
At the break a student had asked me when and how to bring up advance directives with patients. These topics were going to be covered in the next day’s session. Two of the faculty members from our palliative care team— Dr. Annette Macy and our social worker, Laura Rollano— would be engaging the students in exercises to practice these conversations. But I wanted to introduce the subject here.
“A word about advance directives: I advise every adult to have an advance directive. The earlier in the illness journey it is completed, the better. Occasionally, surgeons or oncologists who have heard me make this point challenge me, saying that it is very hard for them to bring up advance directives with patients at the time of diagnosis or when they are just starting treatments. ‘Ira,’ they explain, ‘that is when we are trying to build their hope.’
“The truth is, once a person is diagnosed, there is never a perfect time to bring up advance directives. It doesn’t get easier when people begin having side effects of treatment, or when they have a complication such as a blood clot or infection that lands them in the hospital. It is not easy when their cancer progresses— hope is an even bigger deal then.
“There’s a saying in palliative care: ‘It’s always too soon, until it’s too late.’ If a patient expresses concerns when you bring up advance directives—‘But doctor, I thought you said you might be able to cure me!’— you need to be able to say two things: First: ‘We ask everybody to complete advance directives, because we believe knowing who you would choose to speak for you and what your values and preferences are in case of life-threatening situations is important to providing you the best care possible.’ Second, you need to be able to say: ‘I have an advance directive, because I want the best health care for myself— and I want to support my family as much as I can if they are forced to make critical decisions about treatments for me.’ ”
I explained that, in our role as teachers, we can model that the optimal time for anyone to complete an advance directive is before it is needed.
“The single most effective way to prepare yourself to counsel patients about advance directives is to complete one yourself. Unless and until you do, it may feel awkward, a bit like a physician who smokes cigarettes counseling a patient on quitting, or a morbidly obese physician counseling a patient on weight loss.”
A few students chuckled and I noticed that several students were talking to one another.
“Where can we get them, Dr. Byock?” a student asked.
“Dr. Macy and Laura Rollano will bring a pile of both New Hampshire and Vermont forms tomorrow morning for you to read and, hopefully, complete. It is part of the class exercise. You can also get them from several sites on the Internet.”
I wasn’t through with the illness-as-journey metaphor quite yet.
“When a patient is dying, accompanying entails walking with a person on a journey that ends in the person’s death. Accompanying implies that we physicians will not abandon a person who makes a treatment decision with which we disagree. It may be that a patient refuses a treatment we think she really should have, or that a patient demands an operation or course of treatment that is not in her best interests. My consistent stance is: I am here to serve.
“But I need not relinquish my good judgment or sacrifice my professional integrity to continue this journey with a patient. In states where physician-assisted suicide is legal, not abandoning patients would entail continuing to care for people who had obtained a lethal prescription from other physicians. While I would not take part in the suicide, I would continue to walk with patients, alleviating the person’s discomfort, optimizing his or her quality of life, and assisting the person to accomplish whatever he or she feels it is important to do before he or she dies.”
I explained that professional boundaries are intended to protect and prevent doctors from acting in inappropriate or unprofessional ways. But professional boundaries on doctors’ conduct are not meant to be emotional armor to prevent us from being authentic with patients.
“You are going to be practicing medicine for much of your waking life. If you can’t be yourself during your working days— and nights— practice is going to feel pretty onerous.”
“Many students and physicians-in-training believe that professional boundaries prohibit doctors from being friends with a patient. Not true.
“It is fully acceptable to be or become friends with a person who happens to be a patient. It is only natural for it to happen from time to time. In fact, if you practice in a small town— and I have practiced in a few— it’s hard to avoid treating people who happen to be friends. Rural doctors inevitably end up caring for a few of their neighbors— as well as their lawyer or accountant or barber or beautician, or mechanics, or fellow congregants— patient-friends are nearly inescapable.
“Extending friendship to a patient invites true compassion, not merely sympathy or kindness but a willingness to suffer with the other. Authentic compassion on the part of a physician may entail expressing one’s own feelings of frustration, disappointment, and sadness to a patient.
“At the same time, ‘being real’ implies being willing to say difficult things to patients when necessary.
“Patients are not the only ones who benefit when a doctor is able to be real. It is within authentic relationships with patients that the personal rewards of our profession are found.”
It was time to illustrate these principles with a story from my own practice.
“Let me tell you about my friend Burt, a patient I met when the bone marrow transplant team asked us to help him with overwhelming anxiety associated with his illness and being confined to the hospital for long weeks at a time.
“Burt had myelodysplastic syndrome and unfortunately developed leukemia. In Burt’s case, his only chance of being cured was a stem cell transplant. I explained to the students that the stem cell or bone marrow transplant patients are sometimes confined to their rooms for weeks or even months at a stretch. In preparation for the transplant, patients are given highly toxic chemotherapy and radiation treatments to sterilize their bone marrow and bloodstream of the diseased cells, as well as the healthy immune cells— lymphocytes and granulocytes— that would reject the newly transplanted cells.
“By killing all of their blood-forming cells— precursors of red cells, platelets, and the full gamut of white cells— people are rendered utterly vulnerable to bleeding and germs. Many develop infections and require daily doses of multiple intravenous antibiotics, plus antifungal and antiviral medications. It is common— even expected— for people to feel weak and sick to their stomachs. And it is normal for people to be worried about their future. With good reason. The list of complications that hematological transplant patients are prone to is long and scary. While stem cell and other bone marrow transplants have revolutionized treatment of childhood and many adult blood disorders, including leukemia, for adults receiving cells from unrelated donors, transplants are successful in less than half of cases. Sometimes even when ‘successful,’ the condition recurs months or years later. Still, for many people, the arduous process is all well worth going through because it offers a real chance for a cure.
“Burt wanted to live, but he was reeling from the physical and emotional assaults of his disease and its treatment. For him, being in the hospital before and after undergoing a stem cell transplant was a bit like going to jail— except a whole lot worse.
“When our team met him, Burt had been in the hospital for over a week. He was figuratively climbing the walls, although if his bad hip, the result of an old injury, hadn’t hurt so much, he might have been climbing literally. As it was, he was tethered by a clutter of clear plastic tubes to two pumps and three IV bags clamped or hanging from a rolling steel stand. When he had the energy and his left hip wasn’t aching, he paced around his room with that stand— a bit like a mouse on a wheel— but much of the time he was too exhausted and uncomfortable to walk farther than to and from his bathroom. So he spent long hours lying in bed.
“Burt was a tough, no-nonsense guy— at least that was the persona he cultivated. Within the first two minutes of meeting him, Burt would proudly and loudly tell you that he was a right-wing conservative and that ‘Rush is right!’ When tests and treatments allowed— or he wasn’t puking— he listened faithfully to Rush Limbaugh, watched Fox News, or used his laptop and the hospital’s wireless Internet to stay current on right-wing websites. Before I met Burt for the first time, he had Googled me and had me tagged as a public radio– listening, latte-sipping, left-leaning liberal (all true). And he was eager for a fight.
“But his persona was ninety percent bravado. To me— or anyone skilled at reading people— Burt was an open book. Within about five minutes of meeting him, it was evident that he thoroughly enjoyed people and valued friendships. He just loved arguing, particularly about politics. He wanted my help and our team’s help, but I soon learned that we would have to deliver it on his terms.
“So political jousting became the currency of our daily visits. On most days, after my usual questions about his pain, how he slept, whether he had any appetite, and his bowels, he preferred to argue and advance his far-right political viewpoint. Through it all, Burt and I became friends. We could have serious conversations when we needed to— sometimes tender discussions about things that kept him awake some nights, things he regretted, including some that he had never told anyone else. According to the nurses on 1 West, who all knew Burt well, I also became a tonic for his anxieties and not-uncommon irritability.
“On one occasion, while in the hospital for a six-week stretch, Burt developed a serious infection— actually two infections, one bacterial and the other fungal— and was receiving high doses of potent antibiotics. Despite IV fluids and red blood cell transfusions whenever he became too anemic, the hematologists were having trouble keeping his blood pressure from falling. There was growing concern that he might need vasopressor medications, which would, in turn, require his being transferred to the ICU.
“When I visited he felt weak and had no appetite whatsoever, but said he was not in pain and did not otherwise feel ill. I noted to myself that he looked better than his ‘labs,’ or current blood counts, or the array of active medical problems in his chart. I felt hopeful he would once again pull through.
“The next morning I brought Burt something that I told him would help his recovery.
“On the wall of his room, directly in front of his bed, I taped an eight-by-eleven sheet of white paper on which I had printed in inch-high bold type: IN CASE OF LOW BLOOD PRESSURE, LIFT THIS PAGE. I explained that whenever his blood pressure got too low, I had instructed the nurses to lift and tape the cover sheet up. And I demonstrated, lifting the cover to reveal a color photo that I had copied from the Web and printed at home. It was of liberal cable TV talk show host Keith Olbermann, who stood with a large American flag behind him.”
I told the class, “Burt rose up as if stung by a bee. ‘I hate that sonofabitch!’ he blurted out.
“ ‘I think it’s working!’ I said. ‘I bet your blood pressure is up by twenty points,’ and I puffed out my chest and strutted around the room with mock therapeutic pride. That did it, the angry veneer collapsed, and Burt erupted in howls of laughter. Just then a nurse came in to see what the ruckus was about. Burt told her to report me to the authorities for abuse.
“We had a good laugh and I stayed for a while to allow him time to give me the right-wing news of the day, but (mercifully) my pager went off and I excused myself, saying I’d see him tomorrow.
“On rounds the following day, when I arrived at the counter of the charting station nearest his room, the nurses and aides were talking about the sign I had put up. They reported that Burt complains about it to everyone who visits— staff, family, and friends alike— but, they laughed, he hasn’t taken it down.”
The mood in the auditorium was lively. I only saw a couple of students who seemed aloof or otherwise engaged. In body language and murmuring, most evinced that blend of seriousness, perplexity, irony, and humor that characterize true immersion in tough subjects. Pedagogic bliss.
I checked my watch again and decided to go further still.
“You have put up with me so far, but I suspect I may lose some of you with what I am about to say about my approach to doctoring. I want to let you in on my deepest therapeutic secret. I imagine my patients well.”
I assumed that this would sound flaky to at least a few students. As faculty, we have been filling their minds with facts and the structure and function of organs, cells, proteins, and genes, and I am talking about imagination? Although it might sound “woo-woo” or New Agey to some students, an informed imagination is a doctor’s most powerful therapeutic tool. This applies to both physical and nonphysical realms of health.
“Imagining a person well suggests a route to an achievable destination. Particularly for patients who cannot be cured, this provides me with a direction for counseling of seriously ill individuals and their families. In fact, unless I am able to imagine a patient becoming ‘well,’ it is unlikely I will be able to help the person find his or her own way to well-being.”
I explained that the ability to use one’s imagination as a therapeutic tool is a skill that they can develop and refine over the years of training and practice ahead. At the beginning of clinical training it may be difficult for a medical student to envision “imagining a patient well” while he or she is trying to remember which laboratory test or type of scan to order, or which medication to use for a specific condition. I used the analogy of an apprentice sculptor who is just learning to use the variety of chisels, rasps, and mallets and must concentrate to avoid ruining a piece of marble, contrasting the apprentice to a master sculptor who can imagine the polished masterpiece within the uncut stone.
“In caring for people with far advanced illness, master physicians use imagination in two tangible, directed ways. The first is in taking a history, by listening carefully and trying to understand the perspective of the patient. One person cannot fully know the intimate experience of another. That is why saying, ‘I know what you’re going through’ can sound callous to a patient. However, if a physician has taken the time and invested the emotional energy to do so, she can say, ‘I can only imagine how hard this must be for you,’ in a way that conveys genuine empathy. Doctors can use their receptive imagination to listen to a patient’s story as if they were the speaker and try to see the world through a patient’s eyes.
“Once aligned with the personal perspective of a patient, a doctor’s creative imagination is invaluable in counseling. I might ask a person to imagine the time ahead as part of an ongoing life story. ‘Given what we know of the hero or heroine of this story, how might you hope for the story to unfold in the remaining chapters?’ ”
I explained that a physician’s imagination can be a wellspring of people’s hope.
“Hope is defined as ‘a desire for some good, accompanied with at least a slight expectation of obtaining it, or a belief that it is obtainable.’ Doctors can help people identify meaningful things they can still accomplish or achieve— and then work with them on a plan to do so.”
I looked around the room. I had lost a few students’ attention, but most were still with me.
“You have probably heard the nostrum, ‘It is not what we do, but how we are that matters.’ The exact words used in counseling a patient matter less than the doctor’s confidence and ability to be fully present. A calm voice, unhurried pace, and willingness to listen can allay a person’s fears. Perhaps on some level a patient feels, ‘The doctor is not overwhelmed, so I must be all right.’ Conversely, if a doctor is too uncomfortable to listen to a patient’s concerns or too upset by the thought that a beloved patient may be dying, the doctor’s own fears and anxiety can be contagious. We can be highly therapeutic simply by showing up, leaning forward, and listening attentively.”
A student who hadn’t said a word during the class, but had been leaning forward and clearly attentive throughout the afternoon, now raised her hand. She said, “I once heard a professor say that every doctor develops his or her own style of interacting with patients. How would you describe your style?”
I had never been asked that question. I had to think for a moment. My mind flipped through faces of patients I had cared for and counseled, and landed on Joyce.
“To be honest, in addition to using imagination in the way I just described, if I have a ‘style,’ I think it involves kibitzing.”
I explained that gently kidding with and even lovingly teasing a patient enables me to gain a good sense of their quality of life, the state of their personhood. “I don’t recommend this approach to everyone, but it works for me. Let me tell you about Joyce.
“Joyce was seventy-eight years old and looked as if she had spent most of those years out of doors. The wind had etched wizened lines around her expressive eyes and the sun had stretched her mouth into a permanent smile. Her daughter, Paula, and friends described Joyce as ‘spry,’ an indication of the feisty determination with which this sinewy Vermonter had lived. When her husband was seriously injured while felling a tree two days before his thirty-eighth birthday, becoming physically disabled and unemployed, Joyce held down a full-time bookkeeping job while also doing most of the chores on the small dairy farm the couple owned in northern Vermont.
“I had come to know Joyce over the better part of a year as our palliative care team helped her cope with the effects of chronic lymphoma. We were readily able to treat her pain, but she was gradually becoming weaker. Eventually the lymphoma was destined to claim Joyce’s life. But not for a while. Hospitalized three days earlier with a chest cold that had become pneumonia, she had rapidly improved with IV antibiotics and was nearly ready for discharge. She was getting physically stronger every day, but on the day I visited she was still far too weak to take care of herself. Her spirits were at an all-time low.
“Joyce usually bantered with me. At our first visit, she had asked me about my ‘accent’ and where I’d grown up and since then often teased me about being from New Jersey. She loved The Sopranos, the TV show about Mafia families in New Jersey, and wanted to know if I was ‘connected.’ That afternoon, however, her mood was somber. We talked about her health and I said that it was probably no longer safe for her to be at home alone.
“I knew Joyce’s family and was aware that her daughter, Paula, and eldest granddaughter, Ashley, along with Ashley’s husband, Jarod, had repeatedly asked Joyce to live with them in southern Vermont. Joyce consistently resisted.
“ ‘Paula’s a patent attorney— and good at it— makes a very good living. But she is divorced, has three girls, one still in high school, and Ashley’s pregnant. Don’t get me wrong, Ira.’ (We were on a first-name basis.) ‘I love those kids like flowers love the rain,’ she added loudly. ‘But Paula has her own problems. Bad relationships with a series of men— she picks real losers— and has never really found herself.’ She gave me an if-ya-know-what-I-mean look. I nodded, indicating I was following the conversation. ‘She’s seeing a high-priced shrink in Albany. Two hundred dollars an hour’— Joyce rolled her eyes—‘ twice a week!’
“ ‘I just want to stay in my own home— as long as I possibly can,’ she said. Sitting in the recliner chair in her hospital room, Joyce confided in me, ‘I really worry about becoming a burden to my family.’ ”
“I hoped gentle humor would get a rise out of her. ‘You needn’t worry, Joyce,’ I said. ‘I assure you, you already are.’ ”
“She chuckled and smiled wryly. ‘Oh, thanks a lot. That makes me feel MUCH better.’ A sparkle returned to her eyes.
“I explained that her family already owned her illness. ‘How could it be otherwise? Your daughter and her children love you, and it’s natural for them to worry about you. Do you really think it is easier on them with you so far away, living by yourself? The truth is, what they probably need most for their own peace of mind is to take care of you.’ ”
“She listened thoughtfully. ‘Joyce,’ I continued, ‘didn’t you tell me you had cared for both of your parents during the last part of their lives?’ ”
“ ‘Yes.’ She nodded.
“ ‘And you cared for your husband for nearly ten years, including the months before his death. Was that important for you to do?’
“Nothing I said or asked that afternoon visibly moved Joyce as much as that question.
“ ‘Yes, it was really important.’ She nodded again.
“ ‘When Paula was born, she required endless hours of care and, I’ll bet, kept you up nights. Wasn’t that a wee bit of a burden?’ She kept my gaze but wasn’t going to concede the point. ‘Of course, she was a baby, for Christsakes!’
“ ‘And when your husband was injured and you became the breadwinner for your family, as well as tending the farm, all the while caring for him— wasn’t his condition and need for help a burden?’
“ ‘Never for me!’ she shot back.
“ ‘How about for him? Did he ever express feeling that he was a burden on you and your family?’ She looked down and, after a moment, nodded as if in a conversation with herself.
“ ‘Yes, he did,’ she said thoughtfully. ‘For me, it just wasn’t even a question. I loved him and did what I had to do.’
“ ‘Joyce, my sense is that you have just described how Paula and your grandchildren feel now. You are their mother and grandmother, and they want to care for you. The fact is, they need to care for you, for their own emotional well-being. Their worse fear is having you die alone, maybe even on the floor of your farmhouse, with them miles away, unable to help.
“ ‘Like it or not,’ I continued, ‘you and your family are in this together. Their lives are already disrupted by your illness. You can’t fix that; you can only make the best of the situation. Consider that just possibly the best thing you can do for your family is to let them take care of you. They may need to pamper you to express their love for you.’
“I paused, before adding, ‘And there are still lots of things you can do for your family that no one else can do.’
“ ‘Like what?’ she asked with a theatrical expression, her head tilted, one brow raised in doubt, the other eye squinted against potential evil. Apparently, she’d been warned about shysters from Jersey.
“ ‘Well, for one thing you might consider telling your daughter that you are proud of being her mother. No one else on the planet can give her that gift.’
“At that point the theatrics evaporated and she abruptly began to tear up. I moved the box of tissues from her bedside table to the tray stand next to her recliner chair. Otherwise I was quiet, simply present, consciously creating a space in her hospital room in which she could do what she needed to do.
“After a few wordless moments, Joyce began to giggle. Curiosity got the best of me and I asked her what she was laughing about. Through her tears she said, ‘That’s what my daughter needs, Ira. She doesn’t need that shrink! She needs me, her mother, to tell her I love her and that I’m proud of her!’
“We laughed together, agreeing that if all parents would take the time— and spend the emotional energy required— to tell each of our children how much we love them and how proud we are to be their mother or father, we might put a generation of psychotherapists out of business.
“ ‘Another easy thing you might do is tell your stories. Maybe your daughter knows the details of your life, but do your grandchildren? Have they heard the history of where you grew up, about your brothers and sisters— their great-aunts and -uncles— when they were kids, and who your best friends were? Can they even imagine what your school was like, or your first job? Do they know the story of you and your husband meeting and falling in love?
“ ‘You get my point. These are your stories, but in a sense, they are theirs, too. Our No One Alone volunteers often help people record their stories, usually just with a microphone, sometimes with the help of a family photo album. If you were to do it, I’d bet a lot that one day the child that Ashley is carrying will listen to those stories and hear your voice.’
“ ‘Boy, you’re good! You could probably sell snow to the Eskimos.’ ” She shook her head and smiled. I noted to myself that her remark changed the subject. Teasing me allowed her to avoid agreeing to anything.
“Still, something began to shift within Joyce that day. I telephoned her a couple of weeks after she left the hospital just to hear how she was doing. She said, ‘As well as you could expect, I guess.’ The friendly sarcasm in her voice let me know she was glad I called.
“She hadn’t moved, but it was no longer out of the question. She allowed more paid help into her home. One granddaughter was now staying with her on weekends. And she said she’d taken my advice and begun recording some of her stories with the help of a hospice volunteer.
“I asked her whether it was hard for her to accept help from her daughter and granddaughters.
“ ‘I don’t like it,’ she said, adding, ‘but I guess that’s life.’
I asked the students to notice how I had built on the rapport I had established with Joyce— and employed imagination in counseling her.
“This is the sort of counseling that mostly requires a bit of time and the will to listen. This therapy is safe and nontoxic, and not esoteric. Even medical students can do it!”
That brought open laughter. At this point the auditorium felt like a living room. People were relaxed and our time was drawing to a close.
A student raised her hand and then said she had a serious question. “You clearly get close to your patients. What is the cost of caring to you? How do you deal with your feelings, especially during busy days?”
“Well, there are plenty of days that I feel drained. I am often glad for the evenings and the weekends I am not on call, and for vacations. Luckily I have a wife and children who love me, and a full personal life that balances the stresses and sorrows that I experience as a doctor. Sleep, exercise, meditation, good food, and humor all help a lot.
“Be wary of the notion that we doctors are like glasses that are either full or empty. In this view our emotional tanks are inevitably drained by our jobs. This assumption disserves us. In my practice, I am more often filled up by my relationships with patients, including those who are dying. After more than thirty years of practice, I often walk out of the hospital at night feeling struck with how lucky I am to do what I do. Sometimes, I feel that way even when someone I have cared a lot about dies.”
As the class ended, I reminded the students to complete an evaluation form and said again that I hoped they would choose this topic for next year’s ICE class.
Gathering my papers and walking from the auditorium, my thoughts went back to the student’s last question about the emotional toll this work sometimes exacts from me. My thoughts went to a young patient whose hard life and illness affected me deeply and I remembered the day that Sharon died. [151-185]
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