What If We Don’t Flatten the COVID-19 Curve?

On April 5, 2020, US Surgeon General Jerome Adams said, “The next week is going to be our Pearl Harbor moment. It’s going to be our 9/11 moment.” The same day Dr. Anthony Fauci, arguably our most trusted spokesperson during this coronavirus crisis, said, “We’ve got to get through this week that is coming up because it is going to be a bad week.” One oft-cited set of projections showed deaths from COVID-19, the illness caused by the novel coronavirus, and resource use (including ICU beds and ventilators) were expected to peak this weekend. That all of this is happening during Easter and Passover only adds to the sorrow.

For those of us in Texas, the wait to peak is a bit longer. Estimates a week ago were for peak resource use on May 6, 2020, but that prediction has now moved up to April 22, with peak in daily deaths on April 24. Texas appears to be flattening the curve. In Angelina County, we have 16 confirmed cases of COVID-19 as of April 9, but only 283 people have been tested so far. We can only hope that the wise and early decisions by our local elected officials, including the Stay Home – Stay Safe order, will have flattened our curve enough to avoid the healthcare crisis experienced in New York, New Orleans, and other cities.

But what if our hopes are unfounded? What if we get a surge of COVID-19 cases beyond what our healthcare system can handle? In New York City, some COVID-19 victims could be temporarily buried in mass graves in a park, as morgues don’t have the capacity to handle the mounting casualties.

Thankfully, doctors across the nation have been giving much thought to this grim prospect. After the 2003 SARS outbreak, North Texas physicians came together to answer that very question: What would they do if a really big pandemic hits and hospitals are overwhelmed? The result was the formation of the North Texas Mass Critical Care Council. The council established that during a time of crisis, the ethical, moral, and medical approach should be that “access to treatment would be based upon the patient’s ability to benefit from it, using objective physiologic criteria.” In other words, medical evidence – rather than insurance status, social standing, what have you – would guide decision-making about which patients are most likely to benefit from ICU interventions when there are not enough ICU beds or ventilators for every patient. The goal – as it should be in any medical crisis – is to save “as many lives as possible.”

In a similar fashion, CommonSpirit Health, the Catholic health system that is the second-largest nonprofit hospital chain in the US (and the parent of CHI St. Luke’s Health Memorial Lufkin), developed Crisis Response Guidelines for Hospital and ICU Triage Allocation. These guidelines are not based on opinion or guesswork. The many criteria used to prioritize who would benefit from ICU and ventilator support are validated in the medical literature and have been compiled to arrive at a robust sequential organ failure assessment (SOFA) score, based on the degree of dysfunction or failure of the heart, lungs, liver, kidneys, brain, and blood system. This SOFA assessment, well known to emergency and intensive care specialists, is used routinely to predict mortality in any critically ill patient.

Based on SOFA scores and other medical criteria, doctors might determine that an elderly patient with COVID-19 whose organs are functioning well is more likely to recover using a hospital ventilator than a young patient with multiple organs shutting down from the virus, but the decision would be based entirely on whether the treatment is likely to help the patient recover. Doctors are expressly prohibited from considering social status, money or other nonmedical criteria when making these decisions. The last thing doctors want to be accused of is indiscriminately playing God.

A recent Wall Street Journal opinion implied that merely considering apocalyptic scenarios would lead to legalizing euthanasia, and that not having guidelines (and thereby wasting resources on those that would not benefit) was morally superior to sound medical decision making. Texas Health and Safety Code §166.009 acknowledges that sometimes difficult choices have to be made and states that provision of life-sustaining treatment is not required if it “cannot be provided to a patient without denying the same treatment to another patient.” There is a larger problem of futile care in this country that did not start with the coronavirus pandemic and it won’t end once this virus is under control.

Crisis guidelines are not written to decide who lives and who dies; they help direct the most aggressive care to those who are most likely to benefit so that the most lives can be saved. Regardless, all patients are to be treated with dignity and receive appropriate and compassionate care. If I, as a physician and community leader, have little to no chance of survival if placed on a ventilator – based on solid medical criteria – but an illegal immigrant (for example) has a good chance of survival, guess who gets the ventilator? Not me. And that is the way it should be.

We must continue to follow the social distancing recommendations of our city, county, and health district leaders in order to minimize the impact of the coronavirus locally. We can do this – we ARE doing this. As the Lufkin/Angelina County Chamber of Commerce is encouraging us, we are #BetterTogether and #AngelinaStrong.

End-of-Life Implications of the Coronavirus Pandemic

We are early in this coronavirus game of social distancing and hand washing. We haven’t quite become weary of it. We joke about it. And yet, I am starting to see – among my friends – some very real concern about our elder parents and grandparents. But we don’t allow ourselves to linger on those thoughts much. We should.

The United States has been accused of being late to respond to the coronavirus pandemic, late to test our US population compared to other countries (South Korea, for example), and “doomed” in our response. Even so, we are just beginning the initial rise of the now well-known bell curve of the Coronavirus Disease 2019 (COVID-19) pandemic. Known cases are doubling every day, it seems. Deaths are increasing as well.

As a cancer physician with additional hospice and palliative medicine (end-of-life care) certification, I view the coronavirus pandemic with increasingly darkened lenses. Coronavirus is a new and immediate threat to life, and we are not ready for what that means. If we don’t succeed in slowing the spread of coronavirus and suppressing new cases – now widely known as flattening the curve – 2.2 million people in the US could die. We are not talking openly – publicly –about how we are going to handle this massive number of deaths with COVID-19.

If the coronavirus epidemic is as bad as some predict it will be, discussions about end-of-life care with this disease will soon become front and center. There may not be enough ventilators for everyone who “needs” ventilator support. Italy has been forced to triage sick coronavirus patients based on age, given that the death rate among the elderly is so high. Italian doctors have admitted that there were simply too many patients for each one of them to receive adequate care. They describe a “tsunami” of patients and a more than 7% death rate (though researchers have lowered the calculated death rate in Wuhan, where the pandemic started, to 1.4%). Preliminary outcomes of patients with COVID-19 in the US show death is highest in persons aged ≥85, ranging from 10% to 27%, followed by 3% to 11% among persons aged 65–84 years.

The Italian society of anesthesiologists issued fifteen recommendations of ethical and medical criteria to consider if ICU beds are exhausted, saying doctors may have to adopt more wartime triage criteria of gauging who has the best chance of survival versus “first come, first served.” Those who are chronically ill with pre-existing lung disease, even if they survive a serious coronavirus infection, are likely to be left with even further reduced lung function and poorer quality of life.

Unlike a localized disaster – most memorably Hurricane Katrina, in New Orleans in 2005, where healthcare decision-making received intense scrutiny and prompted legal action – we are experiencing a global, acute healthcare emergency that may require historic moral and ethical decisions that impact who lives and who dies. We will be rationing healthcare on the fly. Are we ready for that? As family members? As a community? As a nation? Are our hospices ready for the number of patients needing immediate, short-duration, and contagion-related end-of-life care?
Perhaps the most terrifying aspect of the coronavirus epidemic in countries where death has become frighteningly common is the loneliness of the death. Hospitals in the US are already limiting or even forbidding visitors. In Italy, seriously ill coronavirus patients are isolated from family and often die alone. Families are not allowed to have a proper burial, and not just due to restrictions on gathering – morgues have an enormous backlog to work through. That is certainly not what we would call a “good death” and not what those of us in the hospice care field want for any patient.

Trump has labeled himself a wartime president, declaring we are at war with an invisible enemy. "Now it's our time. We must sacrifice together, because we are all in this together, and we will come through together," he said. What is not stated – and what I am afraid will happen – is the wartime sacrifice analogy will extend to real lives lost. In an ironic twist of fate, it very well may be that the remnants of the Greatest Generation are once again on the front lines. Even down to the Baby Boomers, our nation’s elders will bear the brunt of the coronavirus disease, certainly, but likely the financial catastrophe surrounding the pandemic as well. (I wonder if the economic collapse will kill as many or more people than coronavirus does.)

The time is now to have discussions with our older/elderly parents and grandparents about the very real risk of serious illness and death from COVID-19. Wills need to be written and advance directives and durable powers of attorney completed now – before our loved ones hit the hospitals. This is not morbid; it is both pragmatic and necessary. If we emerge from this battle relatively unscathed, we are no worse off for having had the discussions and done the planning. Patients and families should be driving end-of-life care decisions. We owe it to our hospitals and healthcare workers not to overburden the system with trying to care for those who neither want nor would benefit from aggressive measures.

How and Where People Die – Is it Good?

All of us, at some point, have pondered what it means to have a “good” death. A common theme is to fall asleep in one’s own bed and simply not wake up. Woody Allen famously said, “I’m not afraid of death; I just don’t want to be there when it happens.” The underlying desire is comfort, serenity, peace.

According to the Centers for Disease Control (CDC), the top ten causes of death in the United States in recent years were heart disease, cancer, accidents, lung diseases, stroke, Alzheimer’s disease, diabetes, influenza and pneumonia, kidney disease, and suicide.   These top ten account for three out of four deaths, and most are chronic diseases marked by decline over years with increasing need for medical care and hospitalization along the way. Yet all along there is this denial of illness and death.

We used to be familiar with death. Before the 1940s – prior to antibiotics, chemotherapy, heart surgery – people usually died in their homes over the course of a few days or weeks.  Sir William Osler, frequently described at the Father of Modern Medicine (d. 1919), called pneumonia – a leading cause of death in his time – the “friend of the aged” because it was an “an acute, short, not often painful illness.”  With the advent of the intensive care unit (ICU) and an ever-expanding medical-industrial complex, we now have approximately 4 million ICU admissions per year and about 500,000 ICU deaths annually.  The contrast between death at home versus in a technology-overrun ICU could not be more stark. In 2010, 28.6% of Americans died in the hospital.  Yet nine out of ten Americans say they would prefer to die at home if they were terminally ill and had 6 months or less to live. 

Unfortunately, death in the hospital is rarely pretty. Believe me; hospitals do not want patients dying in their facilities. It messes with statistics and quality ratings. It is also far more expensive.  So, if hospitals don’t want us dying there, it costs more money, and we say we would prefer to die at home, where is the disconnect?

There are several problems. Doctors don’t like talking with their patients about death and dying. Doctors don’t want to appear to be giving up hope by talking about end-of-life care, nor do they want to appear helpless, as if nothing more can be done. Patients, having watched one too many TV medical dramas, believe that technology and medicines are so good now that they can overcome any illness, even at the very end of life.

Perhaps the most egregious of these technological and communication disconnects at the end of life is with a procedure called cardiopulmonary resuscitation – the “Code Blue” you hear overhead periodically in hospitals. A code blue is an actual life-threatening emergency situation in which a patient is dying – typically their heart has stopped beating and/or breathing has ceased – and an entire medical team works to revive him/her with medications, chest compressions, intubation, electrical shocks, and more.

Cardiopulmonary resuscitation (CPR) can be life-saving in the community setting when a person suffers a heart attack or drowning, for example. According to 2014 data, nearly 45 percent of out-of-hospital cardiac arrest victims survived when bystander CPR was administered.

For hospitalized patients who suffer cardiac arrest (essentially, who die), the overall rate of survival from a “full code” procedure leading to hospital discharge is barely 10 percent. But most people, when asked in a scientific study, believe the survival rate to be more than 75 percent.  Unfortunately, the quality of life of patients who do survive resuscitation in the hospital is often not good. Rarely do the few survivors return to their previous functional status, which in hospitalized patients was probably poor to begin with. There can be brain damage from prolonged lack of oxygen, bruising and pain from broken ribs, and need for prolonged rehabilitation or nursing home placement.

But unless you – or a family member speaking for you – explicitly states otherwise, this likely will happen to you if you are coded in the hospital. And despite the resuscitation attempt, you will very probably die anyway. Is this really what you want your minutes to look like?

The good news is that we have far more control over where and how we die than one may think. First, talk with your spouse and your kids – and your doctor! – about how you wish to die and where you wish to die if you were to find out you had a terminal illness. Second, make every effort to write your wishes down. In Texas, there is a document called a Living Will available online at https://hhs.texas.gov/laws-regulations/forms/miscellaneous/form-livingwill-directive-physicians-family-or-surrogates. Both English and Spanish versions are available. This Directive to Physicians and Family or Surrogates lets you, the patient, tell your doctors and others what types of treatments you do or do not want if you are terminally ill and no longer able to make medical decisions.

In addition to this advance directive, Texas law provides for two other types of directives that can be important during a serious illness. These are the Medical Power of Attorney and the Out-of-Hospital Do-Not-Resuscitate Order. Don’t wait until a crisis to make your wishes known. It may be too late.

Finally, hospice care is available through Medicare, Medicaid, and most private insurers to help patients achieve the “good” death they say they want, not by hastening death, but by helping terminal patients to fully live the life they have left as comfortably as possible and most often at home.

Palliative Care: Something We All Want

As a hospice physician – in addition to my role as a doctor who treats cancer – much of my focus is on comfort care. Part of my motivation to study medicine stems from my childhood concept of who a physician was and should be: a healer and comforter. The physician of yesteryear came to the bedside to care for and comfort the sick (and yes, the dying). I love that the Latin root for comforter is confortare, meaning, “to strengthen much.” In Christianity, the Holy Spirit is also called the Comforter.

Frankly, all physicians should practice comfort care. We know we aren’t to harm our patients. That obligation not to inflict harm intentionally is the ethical principle of nonmaleficence. It is summed up in the Latin phrase Primum non nocere – First, do no harm. The Hippocratic Oath states, in part, “I will use treatment to help the sick according to my ability and judgment, but never with a view to injury and wrong-doing.” That oath – to help the sick – expresses our obligation to do good (the ethical principle of beneficence). Though the actual oath used in various medical schools has changed over time, the overarching mandate to help the sick – and, at a minimum, not to harm them – is universal.

What does it mean to help the sick? That seems, on the surface, like an obvious question. “To cure, of course!” we would say in the 21st century. But curing disease is a quite modern concept. For most of medical history, comfort care was the primary goal. Modern technology and the emphasis on cure got us advanced cardiac care, open heart surgery, amazing innovations in cancer treatment, and so much more. But by 1980, most people died in the hospital. This was rare just a generation or two prior to that, when nearly everyone died at home (or on the battlefield). 

Since 1980, the number of people dying in the hospital has declined somewhat, thanks in part to better end of life care (including hospice care). However, 7 out of 10 Americans still die in a hospital, nursing home or long-term care facility when 7 out of 10 of us say we want to die at home (only 25% of Americans actually do die at home). Utilization of hospice care at the end of life is still woefully low.

But, what about those in the hospital who aren’t expected to die, who want a better, more “comfortable” hospital care experience overall? “Cure sometimes, treat often, comfort always,” is a wonderful mantra attributed to the 19th century tuberculosis physician Dr. Edward Trudeau. This phrase sums up a newer movement in medicine called palliative care. 

Palliative care focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing any serious illness. To palliate means to relieve – literally, to cloak – with the focus being on symptoms. Symptom management obviously should not be limited to end of life care.

As an example, for an ICU patient suffering from an acute exacerbation of lung disease, probably on a ventilator for a short period of time (but expected to recover), the physician historically has been paying attention to oxygen and carbon dioxide measurements, volumes of air going in and out, the acidity of the blood, and other “numbers” that paint a picture of how the patient is doing. But not how the patient or family is feeling. Shortness of breath? Anxiety? Nausea? Pain? Dealing with prognosis and potential end-of-life decision-making? Social and spiritual support? These are issues that might benefit from a palliative care consult.

Every hospitalization (whether ICU or not) has the potential for needing some degree of palliative, or comfort, care in addition to and alongside the acute medical needs that precipitated the admission in the first place. Often, the treating physician can and should address these needs. Quality metrics such as patient satisfaction, length of stay, and even cost of hospitalization are improved with good symptom management.

And, believe it or not, sometimes patients live longer with good comfort care! In my field of oncology, randomized trials have shown improved quality of life and even improved survival with early use of palliative care. The American Society of Clinical Oncology (ASCO) recommends the integration of palliative care with conventional oncology treatment, and the American Society for Radiation Oncology (ASTRO) has urged early palliative care referral when cure is not expected, even if death is not imminent and treatment still is ongoing.

CHI St. Luke’s Health Memorial in Lufkin will be starting a new palliative care consult service later this fall. A team consisting of a physician, nurse, and social worker all certified in palliative care will be available to consult with and advise physicians on any patient with difficult to manage symptoms, regardless of whether or not the patient has a terminal prognosis.

As we learn more about palliative care, we remember the Golden Rule: “So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets (Matthew 7:12, NIV).” 

Comfort always.

What I Learned in Medical School That Was Wrong

I recently attended my 30th medical school reunion at Baylor College of Medicine in Houston. It was a grand time of reminiscing and reconnecting with war buddies from the trenches of medical school. Part of our reunion weekend included lectures on current hot topics, such as the absurdity and danger of the anti-vaccine movement. But the lecture most of us were anticipating was on what we were taught in medical school that turned out to be wrong.

The topic itself was quite an admission from one of the most prestigious academic institutions in the world. I mean, everything science tells us is true, factual, indisputable, and remains so forever, right?

One example where the teaching of the time was wrong was peptic ulcer disease. When we started medical school, surgery for ulcers was common. Ulcers were thought to be caused by stress-induced excessive secretion of acid in the stomach. The surgical procedure known as antrectomy (removal of the distal end of the stomach) and vagotomy (cutting the nerves that lead to acid secretion) was performed basically to stop acid production. But this was not a small operation. Patients were often left with really unpleasant gastrointestinal issues such nausea, vomiting after eating, and dumping syndrome (abdominal cramps and diarrhea after eating).

What we now know is that ulcers quite often are caused by a bacterium known as H. pylori, which can be easily treated with an antibiotic – to kill the infection – and antacids. Not only was this revolutionary (and simple), but the medical establishment refused to believe it at first. There were many reasons, but it just didn’t fit what they thought they knew. It was, so they thought, a psychosomatic illness. And bacteria weren’t thought to be able to live in the stomach. The Australian doctor who co-led the discovery was so desperate to prove his theory that he even drank a cocktail of the bacteria to prove his point. History shows he was vindicated. The whole bacteria/ulcer connection was a radical idea at the time. Yet it was right, and the two who discovered it were awarded the Nobel Prize in 2005.

In my own field of oncology, there has been significant progress over the last 30 years. We now cure 70% of cancer patients compared with just 50% a generation ago. It was still a fairly paternalistic time in medicine. You didn’t question what the doctor told you to do. Physicians were taught – wrongly – that we should treat all patients aggressively all the way up to the end of life; otherwise, we would be taking away hope and devastating our patients.

In retrospect, it seems obvious that was a ridiculous and cruel assumption. Informed consent demands honesty. Hope cannot be reduced simply to wanting to live one more day at all cost, especially when ravaged by an incurable disease. What about hope for reconciliation with estranged family members? Hope for a pain and symptom-free death? Hope to die at home surrounded by family and friends, not alone in an ICU? Of course, now we have an entire field of comfort care/palliative medicine – including hospice care – to help with end-of-life symptoms and care.

Another example is less about what we were taught that was wrong than with what we just didn’t know. My class of 1987 started medical school in 1983. The AIDS epidemic was so new at that time that we didn’t even know caused it. The human immunodeficiency virus (HIV) – originally called HTLV-III, or human T-cell leukemia virus – wasn’t even called HIV until 1986. Fear and judgmentalism drove much of the public and academic response to this novel epidemic. We even had a classmate die of AIDS before the identification of the virus was made. These were scary times. With HIV/AIDS, we were living in and experiencing a time when urgent research and rapid discovery were needed to fight a terrible (and terribly misunderstood) disease. Our own fear and prejudice slowed that effort down.

I am curious what we will admit to being wrong about when the current medical school graduates have their thirty year reunion in 2047. Perhaps a brilliant discovery about Alzheimer’s, for example, will turn the medical world upside down. That is an illness where everyone would rejoice in acknowledging what we either got wrong or just didn’t know. Of course, more or unique discoveries in the field of cancer prevention and treatment would be welcome. In any case, we must be willing to admit that we don’t know everything there is to know today, and that we just might be wrong about some things. However, in today’s political climate I am not holding my breath to hear a mea culpa from the scientific community any more than when H. pylori was discovered. Maybe I’m wrong…

The Role of the Hospital Ethics Committee

For most of my 25 years in medical practice, I have been involved in hospital ethics committees. You may not know that ethics committees exist, or that there are ethics consults in hospitals.

An ethics committee is a group of people ranging from physicians to chaplains, nurses, social workers, and sometimes community representatives who may meet to develop policies on topics like end-of-life care or medical decision making. It is easy to understand that conflict may arise, for example, when a patient is unable to voice their desires and family members don’t agree; it is much harder to devise or articulate a process toward a solution. Sometimes state or federal law dictates a path; more often, a Solomon is needed to split the proverbial baby. Hence, the Ethics Committee can be consulted to advise on a course of action.

In each institution I have been associated with, the Ethics Committee does not decide which course of action to take. They merely facilitate discussion between parties, advising on known statutes or regulations, and – more than anything – making sure each party is hearing what the other is saying. Most ethics consults end up being non-issues; once communication is clear between parties, agreement on a course of action is often reached.

On rare occasions, family members insist on care being provided or continued when, from a medical standpoint, that care is considered futile (or, in PC-speak, non-beneficial). This is a perfect example of #firstworldproblems. It was only in the 1960s that coronary care units came into existence. Prior to that, death in the home was the norm, with family at the bedside. With the advent of intensive care, we have come to expect immortality in the Temple of Medicine.

As reported in 2010 by PBS’s Frontline program Facing Death, nearly half of all Americans die in a hospital (nearly 70% in a hospital, nursing home or long-term-care facility), while 7 out of 10 Americans say they would prefer to die at home. More than 80 percent of patients with chronic diseases say they want to avoid hospitalization and intensive care when they are dying. Yet only 25% actually die at home. The difference between desire and actual care is striking.

Why, if we want a certain type of care, do we not get it? For one, we don’t effectively make our wishes known. In that same Frontline series, only 20 to 30 percent of Americans report having an advance directive such as a living will. And, even when patients have an advance directive, physicians are often unaware of their patients' preferences.

The default action in hospitals is to provide any and all care possible. Blame our perverse incentive to do procedures, our desire to avoid litigation, and our misguided belief that we can save everyone, and you get patients dying in the hospital not even knowing they are at the end of life. It is this window where a hospital Ethics Committee is most consulted.

In my personal experience, the ethical conflicts that arise within a religious context are the most frustrating. Some patients or families hold on to the miracle cure lottery ticket, demanding care that is both ineffective and injurious, afraid to let go of “faith”, as if death itself is under their control.

That type of faith – sincere as it may be – is nothing more than magical thinking that binds God to the believer, making God not even a god, but a puppet. As Billy Graham reportedly said, “Prayer is the rope that pulls God and man together. But, it doesn't pull God down to us. It pulls us up to Him.”

In healthcare, there is no “right” to expect or demand care that is not appropriate. Physicians have an obligation to “first, do no harm”. This is nowhere more important than at the end of life, where comfort care and quality of life are paramount. To bridge this unnecessary divide, open and honest communication between healthcare professionals, patients and family is key. When communication breaks down, the Ethics Committee can help.

Jimmy Carter's Cancer Revelation

When a current or former President of the United States has a major health problem, it is international news. And when a former president has cancer, we all take in a collective gasp. Especially when that former President is 90 years old. On August 12, 2015, Jimmy Carter announced that he had cancer.

As an oncologist, I read such announcements with particular interest. I look for certain words or phrases that carry a lot of meaning. According to the New York Times coverage that day, Mr. Carter has a diagnosis of “a spreading cancer that was detected by recent liver surgery.” Already, my antennae went up. No cancer in a 90 year old is good news, but a few are potentially more benign acting – not likely to be fatal – than others. For example, prostate cancer in the elderly may not even need to be treated. But just about any cancer in the liver is extremely serious, no matter what one’s age. The New York Times goes on to say that “a small mass” was removed, as if “small” is any more comforting.

But the next statement attributed to the former president’s office blew me away: “(T)he prognosis is excellent for a full recovery.” Full recovery, in my mind, means cure. What sort of propaganda is this, I wondered.

The Times noted that Mr. Carter has a strong family history of pancreatic cancer; his father and three siblings all died of pancreatic cancer, and his mother had it as well. If he had pancreatic cancer that spread to his liver, prognosis is likely months, with a chance for “full recovery” being zero. Most other metastatic cancers also have a poor prognosis, although time frames can vary. How could I reconcile what I presume medically to be a near zero chance of “full recovery” to a press release predicting an excellent prognosis?

What bothered me in the early discussion was not so much that the news media refused to speculate; that is understandable. But Mr. Carter’s team did a disservice to those who have cancer – and to those of us who treat cancer – by overly reassuring and misleading the public about his condition rather than owning up to it.

Thankfully, that misdirection did not last long. It was announced on August 20, 2015 that Mr. Carter, in fact, had metastatic melanoma. Surely that was known on August 12 (the liver surgery was August 3, after all). At a videotaped news conference on August 20, Mr. Carter explained that the melanoma in his liver had been completely removed, but that four small tumors were found in his brain. He started radiation treatment that afternoon and famously taught his Sunday School class three days later.

To Mr. Carter’s credit, he admitted on August 20 that his cancer is “likely to show up other places” in the future. And being the man of faith that he is, he is quoted as saying that his life was in God’s hands and that he was perfectly at ease with whatever comes. It was reported that when he first learned that the cancer was in his brain, he believed he “had just a few weeks left.” After radiation, he will pursue several courses of a brand new drug pembrolizumab – also known as Keytruda – over a period of several months, depending on how he is doing.

Regardless of how Mr. Carter responds to treatment or how long he lives, what started as obfuscation on the part of a press machine ultimately turned into an amazingly vulnerable self-revelation by a man of deep faith. I hope and pray President Carter responds well to treatment. I also hope that as he confronts treatment and end of life decisions he will spark an honest and open discussion of the role of palliative (comfort) care and hospice care. That would be as great a humanitarian legacy as any he has yet left behind.

Recognizing Stages of Grief

My father recently passed away from pancreatic cancer at age 81. What a devastating disease! He lasted a mere two months. Thanks to attentive physicians and great hospice care, he was comfortable and at peace when he died.

For my mom, who was married to my father for nearly 60 years, grieving will be a process. In the medical field, we are taught to think about grief in five stages first described by Elisabeth Kübler-Ross in 1969: denial, anger, bargaining, depression, and acceptance. Watching my mom walk through my father’s diagnosis and death, I caught glimpses of many of these stages in her emotions and responses. It is important to note that these stages were never meant to be all-inclusive or rigidly ordered. Depending on circumstances, certain stages may be more prominent than others, or not experienced at all.

Denial is indeed often the initial response to hearing that you have (or a loved one has) a terminal disease. We just can’t believe it is happening, especially when the one with the diagnosis looks so well on the outside or doesn’t feel that bad. Unfortunately, denial can result in poor judgment. Luckily for my parents, any flashes of denial were tempered by solid medical advice and faith in their doctors.

Anger is one of those ugly emotions that can pop up at any time. But, it is one that is not difficult to understand. I typically see anger as a reaction because of dreams that will go unfulfilled. My mom was humorously a little miffed that my father didn’t make it to their 60^th anniversary in April. But anyone familiar with my mother knows she is too strong a Christian to be truly angry. Significant, unresolved anger can signal deeper emotional or spiritual needs that can affect everything from pain management to dying a peaceful death.

Bargaining is the most interesting stage to me. There is a deep desire in us to bargain as Faust did with the devil for something unattainable… in this case, a cure. Sometimes we bargain with God: “If only you would spare him, I promise I would do anything!” In the terminal cancer arena, this bargaining often takes the guise of a search for alternative, unproven “snake oil” treatments. (Mexico, anyone?) To my parents’ credit, they did not pursue futile, expensive elixirs or elusive cures.

Depression and acceptance tend to wrestle with one another, with melancholy eventually fading and acceptance gaining the upper hand. At least that is what we expect with typical grief.

My mother is a strong, confident woman. She held her head high at my father’s funeral and presided over the reception and luncheon with poise and grace. She so appreciated having her sons and relatives with her! I feared she might not do well by herself after everyone left, but she firmly informed me that she needed some time alone to grieve. For her, that was the right decision. She will cry; she will remember. But she will go on, I have no doubt.

Grief shouldn’t be buried. Tears are OK, even desired. However, debilitating, ongoing depression is not healthy. A minority of people experience a complicated grief that requires significant emotional, psychosocial, even medical support. Hospices are obligated to offer bereavement services for families of patients. What most don’t know is that you don’t have to have lost someone on hospice to join a hospice bereavement group! If you are grieving a recent loss and want to talk to someone or participate in a support group, contact your local hospice for help. You don’t have to grieve alone.

Living Between the Dates

As a cancer physician, reading obituaries is, unfortunately, part of my job description. I don't mean to be morbid about it. Not everyone who gets cancer dies from it - far from it. We cure two-thirds of cancer today. But we still have a long way to go.

I recently read my father's obituary. Oh, he hasn't died yet. My mother, you see, is nothing if not organized. So both of my parents' obituaries have pretty much been written for some time now.

Obituaries are fairly emotionless documents. They also don't often convey the true sense of who a person is. Usually, an obituary is a simple compendium of facts - dates - such as when a person was born and when they died. Others before me have said that what is important is not the date of birth or death, but the "dash" in between. That dash is what symbolizes who a person is, how they lived, what they accomplished.

My father just had his 81st birthday on Sunday. He has been working full time as a financial consultant at the same firm in Midland, Texas (RBC Wealth Management) for more than 48 years. That is a remarkable accomplishment in a field where jumping between firms is not uncommon. But loyalty was important to my dad, and to his clients. They knew they could trust him. His honesty and integrity were natural, unspoken expressions of his Christian faith. But that won't be in his obituary.

My parents love to travel, and they have taken quite a few overseas trips since he reached retirement age, even though he didn't retire! In September, my wife and I were able to go with them to Ireland on a fantastic trip. At 80, their vigor and stamina was amazing. Those two weeks together were so precious, even more so now in retrospect.

Just weeks after we got home, my father was diagnosed with pancreatic cancer. He had the usual tests and meetings with specialists to determine what, if anything to do. His liver is involved and his prognosis is quite poor.

I consult often with patients who are bombarded by well-meaning friends and relatives who think they know what is best and are, frankly, a bit too vocal with their opinions. Thus, seeing my father have to deal with the "You ARE going to MD Anderson, aren't you?" pretentiousness was particularly difficult. Those of you who want to comfort someone dealing with a cancer diagnosis need to learn simply to listen. Don't give advice, because 1) your story or experience is almost always irrelevant, and 2) you unknowingly aggravate the situation by making the patient feel guilty or second guess their decision. Please remember: It's not about you!

Ultimately, after much deliberation, my father opted for comfort care only. I am incredibly proud of the strength it took to make that brave decision. His cancer is not curable and his prognosis is less than six months under the best of circumstances. He chose instead to share quality time with friends and colleagues, with each of his three sons' families, and with his wife of nearly 60 years. What a blessing that time has been!

The apostle Paul wrote that he has fought the good fight and finished the race well. Thank you, Dad, for finishing strong. For demonstrating integrity and commitment in your work for more than 50 years. For your quiet faith, service, and generosity. For your love of family. For filling that "dash" between birth and death with a life well lived and memories we will cherish. Maybe we can insert that into your obituary!

Being There for Those Who Suffer

Two articles appeared recently in major newspapers discussing how we can be more helpful to those who are suffering. The New York Times article by David Brooks (The Art of Presence) looks at helping those who are experiencing tragedy, while The Wall Street Journal column by Elizabeth Bernstein (To Be a Friend In a Time of Need, Talk Less, Listen More) specifically addresses helping those with depression. The lessons of each apply equally well to anyone who is grieving or suffering. To me, Brooks sums up our mission with one word: presence.

What does presence look like? Better yet, what does presence sound like?

First and foremost, silence. That means shut up. When I am sick or grieving, I don't want or need your advice unless I ask for it. Don't tell me I should go see XYZ doctor just because you or your Aunt Melba did. I can make my own decisions, thank you very much. But do let me vent sometimes, without thinking you have to fix it for me. Just be there for me; that is comfort. The Latin root of comfort means to come along side with strength. The Holy Spirit is also called the Comforter. Isn't that a beautiful image?

As friends, we don't feel very strong, though, so we try to overcompensate. Why do we always feel we have to solve someone's problems, rather than quietly comforting? Bernstein notes how we can comfort others with our notes and cards. Brooks agrees it is often simple non-verbal expressions like bringing soup that mean so much. Both emphasize: listen.

When I was in college, one of my best friends was very ill in the hospital from juvenile rheumatoid arthritis. She nearly died. She was a baby Christian, and I tried to "be there" for her. Unfortunately, there were others who told her that her faith was not strong enough or she wouldn't be sick. Not only is that terrible theology - Job, anyone? - it is devastating psychology.

Often, what presence boils down to is time. I remember conversation I had recently where I delivered some devastating news to a patient and her caregiver. It was near the end of a long day, and it would have been so easy to say some platitudes and "give hope" when what was really needed was simple truth delivered with compassion and grace. When the visit was over, the caregiver followed me out into the hall and said, "I know you are busy..." That's when I stopped in my tracks, paused, and replied, "You are the most important thing right now."

She asked some particular questions that made me realize we needed to have a much deeper conversation, and that the "truth" I delivered needed a little more "presence". So, we went back into the room and had the unrushed conversation we should have had all along. We talked much more about prognosis, treatment options, and whether or not to continue with plans to see another specialist and get more tests done.

Ultimately, I recommended hospice care - end of life care focused on comfort rather than prolongation of life. I wasn't sure if the patient would agree. But this lovely woman – who couldn't speak from a prior stroke, but who could understand fully the intricacies of the conversation – looked at me and gave me the most peaceful smile I have ever seen, along with her faltering, "Yes."

At the end of a busy day, that smile meant the world to me. The gift of presence, returned with a smile.