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.

The Importance of Spirituality in Healing

Spirituality has gotten a bad rap. This is understandable, given the watering down of and movement away from organized religion in the late 20th century through today. The use of the term spirituality to describe any inclination beyond the purely physical – often based solely on “it feels right” – makes it difficult to assign any validity to the term. Add to that the oft-accompanying rejection of organized religion (most especially Christianity), and the term spirituality becomes as ethereal as the east wind.

I don’t believe this type of spirituality – this vague notion of otherworldliness or mysticism – has any particular benefit. I doubt it does much harm, either. It is just there. However, a spirituality that equates to magical thinking is not benign; it can be quite harmful. Spirituality is not a golden ticket to physical healing. 

Those who “claim” physical healing based on the strength of a person’s faith or the perceived closeness of a person’s relationship with God are gnostic charlatans peddling a vile snake oil that insinuates that those who are not healed are spiritually inferior and somehow less worthy than those who are. I have had the honor of participating in the cure of thousands of cancer patients over my career. Some of those cases have been so remarkable or unusual as to be “a miracle”, but I have never actually observed a truly miraculous healing. Any such healings that might occur must be ascribed to God and God alone, and God is not a lifeless puppet manipulated by human prayers.

I wish everyone would be cured, but that is not the world we live in. I have also had the privilege of caring for thousands of dying patients in my career, and providing comfort through the dying process is every bit as important – and rewarding – as the curative treatment I provide.

Ultimately, healing is more than just a physical event, as much as we strive for that. Dame Cicely Saunders, founder of the modern hospice movement, famously coined the phrase “total pain” to include not just physical pain, but also the emotional, social, and spiritual components of pain. That holistic concept translates to the overall healing process as well. I might cure a patient’s cancer, but their persistent financial distress, guilt, broken family relationships, and spiritual angst can result in no actual relief of suffering.

Anecdotally, I get a strong sense that patients who have a more than superficial faith cope better with the suffering associated with illness and death than those who do not. There is data showing that faith and religious practices do help patients not only cope with their illnesses but have a better quality of life.

Patients who continue to suffer spiritually despite good medical care often seem to fit in one of two categories: those who have no belief in a hereafter (and worry they have not accomplished enough in this life), or more commonly, those who fear death and eternal punishment for not having lived a good enough life. Either way, they worry they haven’t been “good enough” and it’s kind of late in the ballgame to turn things around. 

On the other hand, orthodox Christian faith starts with that very acknowledgement that none of us are “good enough”. Comfort – the healing of our spiritual pain and suffering, if you will – comes from accepting that God loves us anyway. Further, our suffering ironically can have meaning. That is not to say, as many well-meaning people too often do, “God meant it for good,” or worse yet, “What sin in your life have you not confessed that caused this to happen?”

The Christian faith – more so than any other – speaks volumes about the significance of suffering. Others may teach suffering is something to be overcome by quashing our desires, or that suffering is just a test from God (or worse, always a punishment). Biblical Christianity teaches not only the universality of suffering but the provision of comfort in and through suffering, whatever the cause.

Having a major illness is expensive, stressful, and often all-consuming. Without a comprehensive approach to care for the total person, we will never truly heal. That means more than doctors and nurses need to be involved in the healing process. We must include social workers, chaplains, and frankly, the entire community.

We need to recognize the spiritual struggles that attend our illnesses and the importance of spirituality in promoting comfort and healing. We can do this by sharing our stories with one another, listening without judging, and by mending and strengthening relationships within families, our houses of worship, and the broader community. And, yes, we need to pray for healing and comfort, not as a magical spell compelling some god to act on our command, but as a partner with the one true God who knows what it is to suffer. Let the healing begin.

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…

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.