I have an acquaintance who is suffering from advanced ovarian cancer. The cancer has metastizeed and is now in her lungs, her liver, and her kidney. She is in constant pain. Finding it hard to eat, she has lost almost half of her body weight. Though a tall woman, she now weighs less than a hundred pounds. Over the last three years, she has exhausted every possible treatment option that the best of American medicine has to offer. When told by her doctors that there was nothing more they could do, she refused to give up hope.
She travelled to Germany to a clinic that offered a menus of alternative cancer treatments that are unavailable in the U.S.: radio-wave hyperthermia, mistletoe therapy, photodynamic therapy, insulin potentiated chemotherapy, Galvano Electro therapy, vaccines, and so forth. When the German doctors failed to halt the progress of her cancer, she booked herself into one of the sixty cancer hospitals and clinics operating in Tijuana, Mexico. The clinic she chose claimed that they had discovered a virus that would literally eat her cancer, thereby ridding her body of the disease. As I write this, she is still under their care, so I cannot comment on the outcome.
I don’t pretend to understand the nature of these therapies. I do understand that the German and Mexican cancer clinics stay in business because enough of their clients survive their cancers and attribute their survival to the treatments they received at the hands of the clinics’ doctors and nurses. Did they survive because these alternatives and “unorthodox” treatments actually work, or is something else going on here?
While I can’t gauge the merits of these treatments from a scientific or medical point of view, I can argue that there is “something else”—the placebo effect of hope. The dictionary defines hope as “ a feeling of expectation and desire for a certain thing to happen.” The key word is expectation. Expectation is a combination of hope and faith. If I have faith that the treatments will send my cancer to coventry, then that drastically increases the chances of that happening. Why? Because my belief unleashes in my body the very chemicals that it requires to mute the pain, to heighten my immune system, and even to cure diseases once thought to be uncurable. As is explained in the December, 2016 of National Geographic: “For some, a strong belief that a treatment will heal an ailment can prompt the brain to tap into its own pharmacy, flooding the nervous system with medicating nerutransmitters and hormones. This is the pacebo effect.” 1
I know from past experience hope can make the difference between life and death. In 2004 my mother was hospitalized with multiple organ failure. She was so weak that my brother had to carry her from the car into the doctor’s office. Believing that she was at death’s door, the doctor sent her directly to the hospital. The specialists there told my brother that she would never leave the hospital. They assured him that their palliative care unit was the best in the area, and that her last days would be without pain.
Rather than share their prognosis with my mother, my brother kept talking with her about how much she was going to enjoy life in the sunny new villa into which she had moved only weeks before. He kept her smiling, and believing in her future. The doctors were astounded when her heart resumed a normal beat, and her kidneys began working again. They discharged her less than two weeks after rendering their bleak prognosis. What saved her? A strong immune system bolstered by a major dose of hope. She lived another two years. Except for the last month, those were good years.
As my mother’s story illustrates, even when hope, bolstered by faith, does not manage to effect a total cure, it can extend a person’s life. It can also improve the quality of the additional weeks, months or years that unfettered hope has provided. In his book, Learned Optimism, Martin Seligman offers convincing evidence that the mind, or mindset, can influence both the likelihood that a person will get sick, and the outcome of the illness if they do succumb. Hope saves lives while hopelessness and its first cousin, helplessness, destroy lives. In his words, “...learned helplessness doesn’t just affect behavior; it also reaches down to the cellular level and makes the immune system more passive.” 2
Given the importance of hope to people who are fighting to survive, what do we do when a loved one is dying? Do we tell them what the doctors have told us: that their chances for long term suvival are nil? That they will be dead within six months? That they will never experience another Christmas? When they ask us to give or loan them $40,000 for a month at a cancer clinic in Germany or Mexico, do we refuse, telling them that the doctors who offer these unorthdox therapies are charlatans? Do we suggest that the best thing for them to do is to lie down, take their pain medication, relish their memories, and try to come to grips with the idea of their own demise?
I couldn’t do that. While I would hesitate before taking out a second mortgage on my house to find a loved one the $40,000 they would need to secure a place at one of these clinics, I would try to sustain their hope. I would behave like David Rieff, Susan Sontag’s son, as he watched his mother struggle valiantly to beat the cancer that he knew was killing her. In his words, he acted as her “cheerleader” as she endured months of agonizing treatments and procedures. In Swimming in a Sea of Death, he writes, “…I gave the answers that I believed she wanted to hear, the answers that would give her the strength to go on. And it was so clear that what she wanted to hear was good news and nothing else.”3
But what if the doctors intervene, and deliver their bleak prognoses directly to their patient? While this is a possibility, chances are it don’t happen that way. It certainly didn’t happen that way when Susan Sontag was dying. “It is true that he (Doctor Nimer) never allowed himself to be drawn out on whether he personally thought my mother would suvive or not…Instead, he would reframe the question, and in doing so…let the hope back in.” 4
Doctors are mortal beings, too. As such, they hate having to tell another mortal being that they are going to die. Instead, they consider the averages…..ninety percent of patients with this disease die within five years…and then assume that the patient sitting before them will be one of the exceptions; one of few who defy the odds, and, statistically speaking, are out there on the long tail of the bell curve. They resist giving specifics as to how much time the patient has to live, and instead dwell on the abstract. When forced to give a number, they tend to err on the positive side.
In his provocative book, Being Mortal, Dr. Gawande explains: “Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed ….. You (as a doctor) worry far more about being overly pessimistic than you do about being overly optimistic.” 5
Their attempts to err on the positive side often take a more active form, such as recommending treatments that are unlikely to work. In discussing Sara, a patient who was dying of metastaic lung cancer and also suffered from thyroid cancer, Dr. Gawands reveals his own vulnerabilities. “After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possiblity that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.” 6
Doctors and loved ones are often in cahoots, colluding to sustain the dying patient’s hope. They do so for very good reasons. Hope strengthens the immune system. Hope also helps defeat the terror of confronting one’s own extinction. Chances are, the harder they fight to live, the greater that terror. As David Rieff says of his mother, “Surely it was better to die hoping than cowering in terror, as I feared she might have done.”7
And yet, I have to close with a question. Is false hope better than no hope? Can the chalice of hope actually be, in David Reiff’s words, a “poison chalice”? Is there a downside to hope based soley on fantasy, fiction, and an inability to face the truth? I believe there are serious downsides. Rather than dying peaacfuly at home surrounded by loved ones, the patient with false hope endures a final round of pointless and often painful procedures. Neither the patient nor the family are prepared for the end. And, too often, the patient’s loved ones sacrifice so much to sustain a false hope that they, too, are at risk of an early grave. But that is for another blog.
1 Vance, Erik. (December, 2016), “Mind Over Matter,” National Geographic, 42.
2 Martin E.P. Seligman, Ph.D., Learned Optimism. (New York, Alfred A. Knopf, 1991), 17.
3Rieff, David. Swimming in a Sea of Death: A Son’s Memoir. New York: Simon and Schuster, 2008. 98.
4 Ibid. 111.
5 Gawande, Atul, M.D. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, Henry Holt and Company, 2015. 282
6 ibid. 168
7Reiff, David. 169.
She travelled to Germany to a clinic that offered a menus of alternative cancer treatments that are unavailable in the U.S.: radio-wave hyperthermia, mistletoe therapy, photodynamic therapy, insulin potentiated chemotherapy, Galvano Electro therapy, vaccines, and so forth. When the German doctors failed to halt the progress of her cancer, she booked herself into one of the sixty cancer hospitals and clinics operating in Tijuana, Mexico. The clinic she chose claimed that they had discovered a virus that would literally eat her cancer, thereby ridding her body of the disease. As I write this, she is still under their care, so I cannot comment on the outcome.
I don’t pretend to understand the nature of these therapies. I do understand that the German and Mexican cancer clinics stay in business because enough of their clients survive their cancers and attribute their survival to the treatments they received at the hands of the clinics’ doctors and nurses. Did they survive because these alternatives and “unorthodox” treatments actually work, or is something else going on here?
While I can’t gauge the merits of these treatments from a scientific or medical point of view, I can argue that there is “something else”—the placebo effect of hope. The dictionary defines hope as “ a feeling of expectation and desire for a certain thing to happen.” The key word is expectation. Expectation is a combination of hope and faith. If I have faith that the treatments will send my cancer to coventry, then that drastically increases the chances of that happening. Why? Because my belief unleashes in my body the very chemicals that it requires to mute the pain, to heighten my immune system, and even to cure diseases once thought to be uncurable. As is explained in the December, 2016 of National Geographic: “For some, a strong belief that a treatment will heal an ailment can prompt the brain to tap into its own pharmacy, flooding the nervous system with medicating nerutransmitters and hormones. This is the pacebo effect.” 1
I know from past experience hope can make the difference between life and death. In 2004 my mother was hospitalized with multiple organ failure. She was so weak that my brother had to carry her from the car into the doctor’s office. Believing that she was at death’s door, the doctor sent her directly to the hospital. The specialists there told my brother that she would never leave the hospital. They assured him that their palliative care unit was the best in the area, and that her last days would be without pain.
Rather than share their prognosis with my mother, my brother kept talking with her about how much she was going to enjoy life in the sunny new villa into which she had moved only weeks before. He kept her smiling, and believing in her future. The doctors were astounded when her heart resumed a normal beat, and her kidneys began working again. They discharged her less than two weeks after rendering their bleak prognosis. What saved her? A strong immune system bolstered by a major dose of hope. She lived another two years. Except for the last month, those were good years.
As my mother’s story illustrates, even when hope, bolstered by faith, does not manage to effect a total cure, it can extend a person’s life. It can also improve the quality of the additional weeks, months or years that unfettered hope has provided. In his book, Learned Optimism, Martin Seligman offers convincing evidence that the mind, or mindset, can influence both the likelihood that a person will get sick, and the outcome of the illness if they do succumb. Hope saves lives while hopelessness and its first cousin, helplessness, destroy lives. In his words, “...learned helplessness doesn’t just affect behavior; it also reaches down to the cellular level and makes the immune system more passive.” 2
Given the importance of hope to people who are fighting to survive, what do we do when a loved one is dying? Do we tell them what the doctors have told us: that their chances for long term suvival are nil? That they will be dead within six months? That they will never experience another Christmas? When they ask us to give or loan them $40,000 for a month at a cancer clinic in Germany or Mexico, do we refuse, telling them that the doctors who offer these unorthdox therapies are charlatans? Do we suggest that the best thing for them to do is to lie down, take their pain medication, relish their memories, and try to come to grips with the idea of their own demise?
I couldn’t do that. While I would hesitate before taking out a second mortgage on my house to find a loved one the $40,000 they would need to secure a place at one of these clinics, I would try to sustain their hope. I would behave like David Rieff, Susan Sontag’s son, as he watched his mother struggle valiantly to beat the cancer that he knew was killing her. In his words, he acted as her “cheerleader” as she endured months of agonizing treatments and procedures. In Swimming in a Sea of Death, he writes, “…I gave the answers that I believed she wanted to hear, the answers that would give her the strength to go on. And it was so clear that what she wanted to hear was good news and nothing else.”3
But what if the doctors intervene, and deliver their bleak prognoses directly to their patient? While this is a possibility, chances are it don’t happen that way. It certainly didn’t happen that way when Susan Sontag was dying. “It is true that he (Doctor Nimer) never allowed himself to be drawn out on whether he personally thought my mother would suvive or not…Instead, he would reframe the question, and in doing so…let the hope back in.” 4
Doctors are mortal beings, too. As such, they hate having to tell another mortal being that they are going to die. Instead, they consider the averages…..ninety percent of patients with this disease die within five years…and then assume that the patient sitting before them will be one of the exceptions; one of few who defy the odds, and, statistically speaking, are out there on the long tail of the bell curve. They resist giving specifics as to how much time the patient has to live, and instead dwell on the abstract. When forced to give a number, they tend to err on the positive side.
In his provocative book, Being Mortal, Dr. Gawande explains: “Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed ….. You (as a doctor) worry far more about being overly pessimistic than you do about being overly optimistic.” 5
Their attempts to err on the positive side often take a more active form, such as recommending treatments that are unlikely to work. In discussing Sara, a patient who was dying of metastaic lung cancer and also suffered from thyroid cancer, Dr. Gawands reveals his own vulnerabilities. “After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possiblity that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.” 6
Doctors and loved ones are often in cahoots, colluding to sustain the dying patient’s hope. They do so for very good reasons. Hope strengthens the immune system. Hope also helps defeat the terror of confronting one’s own extinction. Chances are, the harder they fight to live, the greater that terror. As David Rieff says of his mother, “Surely it was better to die hoping than cowering in terror, as I feared she might have done.”7
And yet, I have to close with a question. Is false hope better than no hope? Can the chalice of hope actually be, in David Reiff’s words, a “poison chalice”? Is there a downside to hope based soley on fantasy, fiction, and an inability to face the truth? I believe there are serious downsides. Rather than dying peaacfuly at home surrounded by loved ones, the patient with false hope endures a final round of pointless and often painful procedures. Neither the patient nor the family are prepared for the end. And, too often, the patient’s loved ones sacrifice so much to sustain a false hope that they, too, are at risk of an early grave. But that is for another blog.
1 Vance, Erik. (December, 2016), “Mind Over Matter,” National Geographic, 42.
2 Martin E.P. Seligman, Ph.D., Learned Optimism. (New York, Alfred A. Knopf, 1991), 17.
3Rieff, David. Swimming in a Sea of Death: A Son’s Memoir. New York: Simon and Schuster, 2008. 98.
4 Ibid. 111.
5 Gawande, Atul, M.D. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, Henry Holt and Company, 2015. 282
6 ibid. 168
7Reiff, David. 169.