When medicine took Peter from Ruth

You may not agree with what I have written.  You may judge me callous and cold.  I mean no disrespect to Dr. Bach or to the memory of his wife, Ruth.  I can never truly understand their pain and loss.  I am fully aware that I did not witness the actual events.  However, their story as written is powerful, deeply disturbing and is embolic of much that is wrong with modern medical care. I cannot help but believe there must be a better way.

In the May 6, 2014 issue of New York Magazine, Dr. Peter B. Bach, a lung doctor who studies health policy at Memorial Sloan Kettering, wrote a staggering and heart breaking piece about the death of his wife, Ruth, from breast cancer. In superb and honest prose, The Day I Started Lying to Ruth, tells the personal and medical events of their last eight months together. To read his words is to be deeply moved.

The major theme of the article, as presented in the title, is the emotional conflict Dr. Bach and his wife suffered, primarily because he was a physician.  Instead of being empowered by the knowledge and medical maturity, which his years of sophisticated background might have offered, Dr. Bach was crippled.  Rather than connecting with Ruth more deeply and helping her cope with what was to come, he spends much of the eight months “indulging myself…endlessly contemplating the inevitable,” “a silent participant in the conspiracy.”  Far beyond anticipatory grief, knowledge pulled Dr. Bach away from his wife at the time both needed the other most.

As Dr. Bach begins, “I started acting as my wife’s doctor, and I lied to her.”  From their story, one might even conclude that a doctor’s role is to lie.  At least as told by Dr. Bach, Ruth’s case is a litany of denial, distortion and increasing distance. Because of his experience and training, Dr. Bach has a long view of the events to come.  The resulting deep anxiety was reflected and amplified by her treating physicians.  At no point does one of her doctors take him aside and say, “Hey, your role is not to be her doctor, it is to be her husband.  Stop reading her records, interpreting results and worrying about tomorrow. That is our job. This is precious time. Live each day with her.”

Instead, they allowed him perceived and real control.  He was constantly communicating behind her back about diagnosis and treatment. Even as she is actually dying her treating physician tells Dr. Bach, not Ruth, that further chemotherapy is no longer possible. The doctor says that he does not want to tell her this decision, even though it is blatantly obvious to Ruth that she is deteriorating quickly. They agree that “maybe we won’t have to,” simply because death will likely relieve them of that responsibility.  Thus, when Ruth challenged the treating doctor he lied and said that it was best to “wait another day for chemo.

Apparently at no time did any caregiver tell Ruth in a specific and clear manner her prognosis and thus give her the freedom to plan the end of her life. This despite Dr. Bach’s admission that Ruth had said she wanted to be informed.  Among the few direct conversations about the disease, is a bizarre transcontinental phone consultation in which Ruth’s cancer specialist notes, “it can’t be cured anymore.”  Otherwise, there is apparently no attempt to counsel Ruth in any sort of honest manner and thereby allow her to make decisions about her own life.  I was astonished by the presence of the sentence “”she kept popping the poisonous pills because there was nothing else to do,” while completely absent at any point in the narrative are the words “hospice,” “end-of-life planning” or “palliative medicine.”

The failure of her physicians to have either of these conversations; “with your wife you are Peter, not Dr. Bach,” and “yes Ruth, you are dying,” resulted in disaster.  Such professional support might have allowed Peter and Ruth to share this very difficult journey together, rather then being driven apart by their individual fear.  While tragic and terrible, her death might have been calm and without crisis.  However, they were trapped by shallow medical support into a feeling that there were no positive alternatives.  Thus, in a final real and symbolic desperate medical intervention, the justification for which was “Why not,” Ruth undergoes a futile surgical procedure, which amplifies her suffering and obliterates irreplaceable time.

This very sad story is a microcosm of what is wrong with modern medical care. Our natural terror about pain, suffering, loss and death drives us apart when we most need to be together. The medical system colludes to amplify our denial and thereby increase our suffering.  Dr. Bach’s response to his wife’s disease was a natural result of his experience and training in the setting of his deep passion for his wife.  He, like her, was a patient in need.  Her physicians failed to guide either of them down a path, which while heartbreaking, might not have been brutal, lonely and dehumanizing.

Until caregivers get control of their own fears and understand that patients are strong and can, with proper support, handle the most difficult of crises, we will never find peace at the end of our lives.  It is not Dr. Bach who lied to Ruth.  Because of infinite love, he could not stand to make her suffer.  It was all of us.

 

 

14 Comments

  • Ellen Rand
    Thank you for this eloquent (as always!) commentary on the New York magazine article. What surprised me, following its publication, was the outpouring of sympathetic comments from readers relating their own difficult stories of loss. I admit that as a hospice volunteer, my view might have been biased about the article, but the stunning lack of any mention of palliative care and hospice as a possibility -- even in the context of, "we considered it but weren't ready for it" -- seemed unfortunate. A loss for Dr. Bach and his son, certainly, and a lost opportunity for him to help educate the public about end-of-life issues.
  • meyati
    This isn't much different than what happened to my father in the 1950s. He was opened up for an exploratory from a construction accident, and they found cancer. They told my mother, but not my father, that he probably wouldn't last for 6 weeks. It was left up to my mother, if anybody told my father.. They said that he'd pass happier if he wasn't worried about dying, etc. Many family members of cancer patients are in denial or push away emotionally-even physically. Right now, I'm talking to an English family, whose Mum died last week from lung cancer. They are dealing with guilt that they couldn't stop her from smoking, that one son took off because he couldn't deal with it. and the list goes on. Their oncologist did something that doesn't happen to most American families. He visited the family and told them that Mum was always in complete denial, so the family wouldn't feel so much guilt. Do you know why my mother told my father the complete truth? My father had been an Army medic for years, and he could read charts. She knew that it was a matter of time, until he got hold of his chart. Also, the hospital let us visit our father. This was when anybody under the age of 16 wasn't allowed to visit in a hospital. That was a good clue for my father. Then we were shipped out to our favorite aunt, as we really didn't have any roots, we just moved to Reno. I, personally, am a person that distances myself from family, and pushes them away. I told my family, I have incurable cancer. I don't mean to hurt anybody, but I push people away. I don't want the neighbors to know-I don't want my X to know- I don't want these people to know. If I need anything, I'll let you know. It doesn't bother me to care for others. I cared for my father-he lived for 3 more years. Every time my husband left for 'Nam, I started closing down emotionally. I wanted my agony to stop- for him to leave. He was desperately trying to hang on and cling-and it was more sex for him. So doctors lie. What's new? So does everybody else.
  • Thank you, as always, for your courage. And do I dare add that their "looking ahead" implies that the best doctors can see every hour of the future? There are still miracles possible, but it may take a kind of support she didn't get to allow for that possibility.
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  • Me
    This morning i'm going to attend my first meeting of a bereavement group. Why.???..because i'm trying to understand how others have gotten through this very difficult time and to learn how to come to grips with my loss. Your post, and the article, really caught my attention since so many of the details of their final days were a mirror of ours. What was missing was the truth. I In our case, thanks to your honest assessment of things, we had the time to be peaceful and not frantic. Thanks for giving us that opportunity.
  • Susan
    I'm in stunned disbelief that for all of the medical insight weighing in on this situation, NOT ONE OF THEM has had the insight to call out the current anachronistic travesty of the "lifelong chemo scheme perpetrated on metastatic breast cancer by ASCO" around the year 2000----which is a horror show of "medical protocol" ----attempted successive rounds of cancer dna damage by each type of chemo "hoping" to pause the cancer for successively less time with each treatment. It is failure incarnate,--- signed, sealed, and delivered with a medical smirk and lie by :ASCO. Why are doctors so surprised that this ends up with horrifying failure in most cases? Its not conceivable that people intelligent enough to graduate from medical school have not connected the dots on this medical protocol of assured failure, cooked up by the do nothings of American Society of Clinical Oncology. Strategies like Palbociclib, now pending FDA approval, a cell cycle inhibitor, which does not make the cancer more vicious, as chemo does, should have been developed years ago---- when they were first put on the table. Politics, money, and the Medicare drug bill prevented bringing that to the cancer fight, evidently. If Medicare doesn't want to pay for e a drug, it can't be approved for anyone. What a bottleneck. The enemy in this disgusting current situation of metastatic breast cancer treatment is the lame lifelong chemo strategy of ASCO as the treatment protocol for metastatic breast cancer, as well as the stonewalling of the FDA and its slow tracking of drugs like Palbociclib ----for years. It is almost as if the FDA does not want to turn the vast majority of metastatic breast cancer---the 60% which is Estrogen receptor positive------into a chronic condition, which looks to be at hand with these coming cdk 4-6 inhibitor drugs.This could have been done ten years ago with the potential savings of 240,000 lives over the decade. The FDA will surely write in and attempt to point to the drug companies as the slowdown, but lets be honest here: its the hand that holds the purse strings, the government, and the insurance companies, who are the real problem in this picture. They don;t want to pay for new classes of drugs. The horror show of lifelong chemo treatment and 40,000 women's lives lost each year is quite good enough for them. One European treatment group of doctors has just gone on record with the comment that the current "lifelong chemo strategy"----, ASCO's protocol,---- is "almost unethical." There is no standard lab work in this disease beyond the basic two receptors ER and her2. How in the world can this produce ANYTHING BUT FAILURE? This oncology platform does not even know the disease it is treating by lab or pathology work, past those two receptors. Chemo is just systematically thrown at any fast growing cells. That is not science, that is the work of charlatans.To expect anything other than failure out of this pathetic regime is disingenuous. There is a political angle as well. Judging from all of the "scientific and governmental emphasis" on racial equality of outcomes" of the various types of metastatic breast cancer,----- from ER+, which might now become a chronic condition in some number of cases with drugs like Palbociclib,----- to the harder to deal with her2, and the triple negative, it could be that a scandal of major proportions is brewing. The sacrificing of lives of ER+ women --- can be seen as an FDA shell game to mask the lack of progress in the other two harder to treat varieties. The vast majority of mbc is ER+,. Evidently it wouldn't be good to have racial disparities in cure rates, even though the several distinct types of cancer of this disease do discriminate by race and outcome. FDA has had to be dragged kicking and screaming to acknowledge this fact, with an embarrassing face slap by Cancer Research UK in April 2012. The harder to treat and deadlier triple negative phenotype is more prevalent in some races, which the FDA has been slow to acknowledge. This horror show of reverse discrimination, sacrificing the lives of ER+ mbc patients by slow tracking drugs which could have been developed for this type over a decade ago makes the VA scandal pale in comparison. Palbociclib has been around for a loooooong time, but just made it to development in recent years. Stonewalling this drug by the FDA for years needs to be investigated for the deaths of several hundred thousand women over the last decade. Not to mention subjecting hundreds of thousands of these women needlessly to the travesty of the lifelong chemo regime, which could have been avoided by drugs of the new cdk 4-6 inhibitor class. The story of the years long delay in development in cdk 4-6 inhibitors needs to be fully and criminally investigated, AND heads need to roll at ASCO and the FDA. In fact, take ASCO apart altogether for this fiasco. As well the American College of Radiologists deserve a criminal investigation for their long standing fraud of routinely hiding the mammographic density diagnosis from women ---the ONLY worthwhile and reliable information available from a mammography exam. Hiding this information for YEARS from the patient, and only providing this information in the "physician's letter"-----never seen by the woman---- when mammographic density is correlated with a significant increase in breast cancer,---- is outrageous and inexcusable. Women who are informed of their density diagnosis could seek an MRI, which is much more reliable information than the mammogram. But of course the mammographers would not like to see their practices and businesses become obsolete, so they have engaged in this fraud. With the health system, ASCO and the FDA, and the Mammograpers in this kind of vile campaign against women's health and well being, who possibly can not understand the abysmal medical failure in this country to deal with breast cancer? -----And one third of early breast cancer comes back at some point as more serious disease, a fact which the poohbahs have tried to downplay---which results in horrifying consequences to individuals and those who love them. Too much of this failure is unnecessary, from the primitive and barbaric chemo protocols ---designed to assure failure----which could be avoided in favor of better treatments, to the FDA's failure to act with appropriate haste---for years----to the Mammographers' fraud and greed in hiding the density diagnosis from the women who pay for these reports, to ,,,,,,,,,,need I go on?
  • Liz
    His is a story of an imperfect human coping with grief in the only way he could. Acknowledging his wife was dying to his wife (and then having the conversations they would have) would only make it more real. He needs were driving his behaviors, he was presuming hers (a common human failure) and hoping denial worked (another common coping mechanism except people aren't usually saying "gee I hope denial works' as they don't realize they are in denial). Being a doctor did not make him immune from being human. It was a shame he couldn't bring himself to do the things that would have brought them closer; that he lied to his wife…but I don't see that being a doctor made him somehow "special" in the sense that he should somehow cope better, behave better… many others lie to their loved ones about diagnoses, outlooks for a number of reasons, some of which are to protect themselves because they can't cope even if they couch it in terms of protecting the person with the disease that is killing them… When a loved one is dying people are reacting as husband, wife, mother, father, son, daughter… and not in their role as a professional. Familiarity with people dying does not make watching someone you love die or dealing with the anticipatory grief any easier. In his case he probably had more fears because of what he did for a living and he know how horrible the death process could be. I think the bigger story here is how we help patients and family (and their doctors) deal with end of life so that their fears, etc. as human beings, are less likely to get in the way of what choices are most likely to meet everyone's needs.
  • KJ Surkan
    Wow Susan I want to hear more about this and what can be done about moving ER+ cancer treatment forward! There has to be some way to leverage patient power given the sheer numbers affected.
    • susan
      KJ---- "Petition for cancer immunotherapy for all" Breaking in Huffpost, now.and concerns the pd-1 inhibitors for solid cancer and the CART immunotherapy for blood cancers. The eagle has landed. fda dot gov is being dragged kicking and screaming from prehistoric protocols and barbarism into reality. Confront the FDA on slow tracking these drugs ---Nivolumab has ALREADY BEEN APPROVED IN JAPAN FOR MELANOMA, and is expected to be effective in many cancer types allowing the immune system to recognize the cancer, ----and palbociclib, a cell cycle inhibitor for breast cancer, has been "in development" since 2002. Now being slow tracked by the ?competent? FDA. Both may effectively provide individuals with normal life expectancies. Both are being slow tracked. Games are being played with lives as Pharma is pulling out all stops, but FDA and Insurance are playing hide the ball with budget hold ups. FDA/Insurance is the broken wheel on the cart. Poor mouthing is the standard operating procedure and fda doesn't want it in this years budget. Nor next years, Nor the year after. Cancer especially breast cancer, is not a disease problem, it is a system problem. The insurance budget and medicare.gov doesn't want things to move any faster. A country of innocent women are being subjected to this bumbling and stupidity.
  • Margaret Hughes
    Thank you so much for this article. When I read the article "The Day I Started Lying to Ruth" I kept feeling that Ruth was disappeared from the article. You have articulated exactly what I felt but couldn't fully put in words myself.
    • Susan
      All of the replies to this article seem to assume that the doctor has perfect knowledge and perfect foresight. That is usually not the case. I am intimately familiar with a case where the doctor told the patient that she had "one year to live" after her metastatic breast cancer diagnosis. That resulted in the individual contemplating suicide for EVERY SINGLE DAY OF THAT YEAR. The patient is very well now, NED THREE YEARS past that debacle. Be careful of the crystal ball you attribute to these doctors. Most of them are not capable of predicting the future.
  • My husband, Peyton, died of esophageal cancer two years ago. He prepared for his death in every way possible from having total maintenance done on every item in our home to writing a book for me called “After Peyton” with lists of who to call for every eventuality and the appropriate sequence. His preparation made the difference in my survival. I learned through my experience that our society is sadly ignorant of death. We hide from it. We ignore it. We fear it and we fear those who are touched by it. Every instance is termed a shock, yet it is the one constant in our lives after birth. I want to help change that. I started a Facebook page on the second anniversary of Peyton’s death titled “Until Death Do We Part”. https://www.facebook.com/untildeathdowe My goal is to change public knowledge, attitudes and behavior towards dying, death and bereavement through open communications and shared experience. I plan for this to be a repository for information and an open forum for discussion. I am so impressed by the work you are doing. Any comments (good or bad) and suggestions would be valued.
    • susan
      Yes Sydney people all have to die. But people don't have to die from cancer. Poor medical protocols which are still in the dark ages have engrained the idea that cancer cannot be vanquished. I would urge you to look up the breaking news on the new pd-1 inhibitors. There is no need for the rollout of these drugs to go on for decades while people suffer and have their lives shortened needlessly. Now that these drugs are available, dying from cancer without them is like dying from lack of an antibiotic. Its shameful on the part of the medical society ASCO which has not insisted that protocols be updated.

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