Too soon

It was after shoveling winter snow that Brett began to cough. It was a dry cough, a morning cough, a “smoker’s cough.” It persisted, grew deeper. Several weeks later, there was a particularly harsh cough and in the sink was a crimson blob. Frightened, he called his doctor.

For 71 years old, Brett looked healthy. His lung exam was clear and the cough was gone. A case of bronchitis?   The chest x-ray said otherwise. At the top of his left lung, almost touching his shoulder, was a white shadow. His doctor, now also worried, ordered a CT scan. The scan showed a solid mass, about 3 inches in size. Brett was referred to an oncologist.

A PET scan “lit up” brightly, as well as lymph nodes in the middle of his chest. The rest of his body was clear. A needle biopsy confirmed; Brett had lung cancer and it was beginning to spread.

The thoracic surgeon could not operate. Brett started on several months of chemotherapy and radiation, which burned his throat, made it hard to swallow, so he lost weight. Toxic drugs sapped strength. Brett spent ten days in the hospital with a blood infection. He developed a clot in his left leg. Shingles erupted around his forehead, with needle-like pain deep into his left eye.

In May, Brett completed his planned therapy. A repeat PET scan showed that the tumor was no longer growing and in fact appeared to be dead. His blood counts recovered. The pain in his eye, improved, although he would need a corneal transplant. He gained weight. Brett was in complete remission; no evidence of active cancer at all.

That summer went well. The family took a trip to Maine. Brett ate well, although his endurance lagged. He was mildly short of breath, the result of lost lung tissue and radiation damage.

On Labor Day, Brett did a peculiar thing. He tried to barbeque hamburgers and hot dogs, without ever turning on the grill. He laughed at the raw meat. An MRI showed a two-inch mass in the front of his brain. Neurosurgery removed the lump. Brett was home in four days. Pathology showed that the lung cancer had spread, metastasized, to his brain.

To follow up the surgery, Brett received a brief course of radiation. CT scans of his body were performed. A growth was found in his right adrenal gland and there was something vague in the left lobe of his liver.   New chemotherapy was begun.

Through the fall and winter, Brett was treated with several different chemotherapies, but the disease grew. When a tumor threatened the spinal cord, he was given proton beam therapy. He got cyberknife to his brain, for another mass.

Brett became weaker, more short-of-breath, thinner. Mild confusion meant that he could not be left alone. Bone marrow suppression from treatment, and possible bleeding, mandated six blood transfusions. His kidneys began to fail. Everyone came to visit for the holidays.

In the middle of March, as fell a light snow, Brett collapsed at the kitchen table with a temperature was 103. The rescue squad could barely feel his pulse. He did not respond to shouted words, at all.

Brett moaned briefly as the nurses transferred his scarecrow thin body to the hospital bed. His head, bald, with sunken muddy eyes, lay to the side, as saliva gurgled in his throat and ran, red tinged, onto the white pillow. Brett veins were so frail that three attempts at sticking an IV through paper-thin skin failed. The resident inserted an IV into Brett’s neck. A pressurized mask was placed, but his breathing was so shallow, in brief quick gasps, that oxygen levels remained critical. His blood pressure barely measured on the monitor. The catheter inserted into his bladder drained no urine.

Brett was in septic shock, his weakened system unable to contain a minor urinary infection. The admitting doctor knew that a patient with advanced cancer who ends up in an intensive care unit is unlikely to ever leave the hospital.

In a cheap molded plastic chair, the doctor sat in front of Brett’s family, white coat rumpled, a small stain of blood on the left sleeve, hands folded softly in his lap, hair a bit of a mess. He leaned forward.

“I am Doctor Goldstein. I have been taking care of Brett, since he arrived. He is very sick. We need to talk about what we are going to do. We have given him some fluids and oxygen, but he is very weak. I also put a call into his oncologist and I will talk to him as soon as he calls back.”

Dr. Goldstein asked, “What do you understand, in general, is happening to him?”

“He was fine, last night. I helped him with his shower,” answered the son.

“I mean, what do you understand is happening to him about the cancer?”

“We know he has lung cancer. We know it’s not curable, but he has done everything. We are waiting for that new gene drug to be approved. He has been home and doing pretty well the last week or two,” answered his daughter.

“He’s a fighter,” said his son. “He will do whatever it takes. Dad has been eating better. Last week I took him to the VFW for a beer.”

His wife, sat silent. Dr. Goldstein asked her, “What do you understand is happening to him?”

She looked up, smiled weakly, “He has been though a lot. He spends a lot of time sleeping on the couch.”

It was quiet for a moment. An alarm beeped. A baby cried. Someone laughed. Dr. Goldstein said. “Brett is very sick today. He has an overwhelming infection. His blood pressure is very low and he is not breathing well.”

“Where did the infection come from? Did he get it from the grandkids?”

“No, the infection is not the kind you catch. It comes from inside you, from your own gut, when you are very weak. It happens all the time to cancer patients.”

Dr. Goldstein continued. “Has Brett talked to you, have you talked about what he would want done if something terrible like this happened? Does he have an advanced directive or a living will?”

“I don’t understand,” responded the daughter. “Are you saying that he is dying?”

“I am saying that this is the kind of thing that happens to very sick patients.   This is the kind of thing from which cancer patients die.”

“He is dying?” Responded the son, eyes wide, as he slumped back in his chair, hand over his mouth.

Dr. Goldstein spoke slowly, carefully. “Your Dad is very sick. It will require aggressive medical care to revive him. He will need lots of intravenous medications and will need to be put on a respirator machine to breath for him. Judging by his blood tests, he may need kidney dialysis. And, even then, he may never come off the machines. There is a very good chance that he will die, while he is in the hospital.”

“When … now?” exclaimed the daughter.

“During this hospitalization. In fact, if we do not do aggressive things now, today, he may die very quickly. He is very weak and, yes, the infection may be too much.”

“But, how is that possible?” gasped the son, now turning red, brows furrowed, leaning forward.

“The cancer is overwhelming him.”

“But, I do not understand,” whispered his wife.

Silence filled the room.

“I do not understand. It is so sudden. It is too soon.”


  • I remember recoiling and responding in a similar way when my Mom's situation must have been obvious to everyone but me. In later years, bearing witness to that experience over-and-over as a hospice volunteer, and when I got to be a hospice nurse. It never got old or easier. Each time was like reopening a fresh, clean, new bleeding cut. The encouragement of my pastoral director at Cabrini Hospice would echo at these worst of times: "If you hold his hand and look in his eyes, you can't say the wrong thing."
    • meyati
      You are braver, kinder, and stronger than most.
    • You are doing what I hope to be doing at my local hospital soon. I am waiting for a volunteer position to open up in hospice. God bless you. And God help me! :-)
      • I hope you are doing it by now. I remember saying "God help me" too.
    • D Someya Reed
      One thing I would caution about the words of your pastoral director is that you CAN say the wrong things if you are NOT the right kind of person to be working in hospice. The hospice social worker who enrolled my wife held both our hands, looked directly at each of us and told us not a single truthful thing about how we'd be treated once enrolled. I've since learned that this lack of marketing ethics, unfortunately and to varying degrees, is not uncommon. On the day my wife was brought home from the hospital this same MSW would turn a blind eye to her transport staff having struck (and cut the very thin skin covering) the tumor growing out of my wife's spine even though I had just told them that she had two such growths and to be extremely careful moving her. The MSW chose to exclude any mention of any of this from her written report of that day. The next time we encountered her at the required 72 hour complete assessment she asked my wife, in my presence, if she had completed a will. My wife replied that she had not but that we were discussing it. While again holding my wife's hand, she encouraged us to expedite our discussion and added, "You might want to consider leaving a little something to the hospice." When she left our bedroom, my wife asked me, "Was I just hit up for a donation?" I replied, "That's what I heard." We laughed. It really wasn't funny. Every hospice is different. Every hospice worker in any position is different. Before she died, my wife asked me to promise her to do everything in my power to make sure that what happened to her in hospice doesn't happen to someone else. To this day and in every way and at every opportunity I can, I am and will continue to fulfill my promise to my wife. I implore you (I will beg you, if need be) to always be that "right kind of person" with patients and families and to report and seek to expel any workers from any hospice who will do harm of any sort to either the dying, their families, their caregivers, even their friends. Most people don't want to hear about the bad that happens in hospices or believe it when it occurs. Nor does any hospice (including management or board) want you to know of the skeletons in their closets. If you have been in hospice for any length of time, you know that bad does happen and can at any time. Just like any other business, hospice is not immune to bad staff. Sometimes the bad is done deliberately, sometimes it's out of carelessness. But it happens and more often than anyone wants to admit. Please be the right kind of person who will not do harm and will not stay silent when such harm, in any form, is caused by others. Thank you.
  • Liz
    This speaks to me, yet again, that many doctors don't want to really discuss with patients, so they actually understand, that they are likely going to - or will - die of their cancer when its spread like this. The studies that document the huge percentage of patients (and their families) with stage 4 cancer who don't realize the chemo/treatments are palliative, not curative, and no one makes sure they really get it, for what ever reason, also attest to this problem. Heck when I even asked my oncologist how people die from my most recent cancer (have had a string of them, this most recent one has no cure), he first responded - you don't need to worry about that yet - there are plenty of treatments out there and you are NED at the moment. Nope was not looking for reassurance a that time. Was looking for information about dying from this cancer. One of my other ones tends to be a very painful death. Fortunately for me this one is generally not. People are going to be blindsided if the truth is not presented in ways they understand and the oncologist/doctor doesn't repeatedly make sure they get it. The excuse I have seen most often (and was present in one study as the excuse for not doing this) was not wanting to rob the patient of hope. Hmm well you rob them of other important things when they (patients and family) don't understand they will die of this. You rob them of arranging their remaining life in ways they want to live, making decisions about treatment that might be different if they weren't hoping for a cure, of allowing the family and the patient to prepare for the fact that they will not live as long a life as they had hoped...
    • L Haller
      I agree with you completely. I hope every oncologist has the opportunity to see these patient posts. I would like to add that one of the other unrecognized consequences in keeping a patients prognosis from them is that WE TRUST YOU to lead us through this journey with compassion and care. We know their are no guarantees with cancer. Our expectation is that you do the best you can with the treatments you have availabe at the time, and when that time has run its course, your honesty may be the most effective weapon we have against enduring useless treatments. Anything less than honesty is a betrayal of that trust and of he relationship between doctor and patient.
    • D Someya Reed
      I agree with your comments, as well. There are many ways in which all of these (family) questions could have been answered more directly and definitively but still compassionately. Perhaps Dr. Goldstein thought it wasn't his job to do so rather it was up to Brett's oncologist to provide that level of conversation (with the family). However, Dr. Goldstein said more than enough for any family member willing to hear it that Brett would likely die. He simply did not expand on "when." An "I can't say that Brett's dying at this very moment but..." would certainly have been in order here.
  • Liz
    Relevant to the conversation January 26, 2016 Family Assessments of End-of-Life Care in Cancer Patients Allan S. Brett, MD, Thomas L. Schwenk, MD reviewing Wright AA et al. JAMA 2016 Jan 19. Higher ratings are associated with less-intensive care. Patients with advanced cancer often receive aggressive end-of-life care. To examine associations between family satisfaction and aggressiveness of end-of-life care, U.S. researchers conducted a national interview study of families of 1146 patients who had died from lung or colorectal cancer. Most interviewees were spouses or adult children who always or usually accompanied patients to medical appointments, discussed important medical issues with patients, and spent every day with patients in the last week of life. The median time from death to interview was 145 days. Most family members rated patients' end-of-life care as excellent (51%) or very good (28%). In adjusted analyses, family members more commonly rated end-of-life care as “excellent” for patients who received >3 days of hospice care versus ≤3 days or no hospice care (59% vs. 43%), patients who did not die in the hospital versus those who did (58% vs. 41%), and patients who were not in intensive care units in the last month of life versus those who were (52% vs. 43%). However, family members reported that patients' end-of-life preferences had been followed about 80% of the time, regardless of aggressiveness of end-of-life care. COMMENT The high frequency of “excellent” or “very good” ratings for end-of-life care is somewhat surprising but reassuring, although we don't know how the patients themselves perceived their care. Because higher ratings by families correlated with less-intensive care, some treating physicians likely failed to provide adequate guidance on deescalating care near the end of life. However, other influences — such as contemporary culture, family psychodynamics, and the often-fragmented healthcare system — also shape expectations and satisfaction of dying patients and their families. EDITOR DISCLOSURES AT TIME OF PUBLICATION Disclosures for Thomas L. Schwenk, MD at time of publication Nothing to disclose Disclosures for Allan S. Brett, MD at time of publication Editorial boardsUpToDate CITATION(S): Wright AA et al. Family perspectives on aggressive cancer care near the end of life. JAMA 2016 Jan 19; 315:284. ( See more at:
    • D Someya Reed
      A few things about this study and results need to be understood. 1. The deceased patients relevant to the study had to be elderly and receiving Medicare. 2. The deceased patients must have had only one of two forms of cancer that had been diagnosed a median (50% above, 50% below) of 7 years prior to the "computer-assisted family interview." 3. The two cancers chosen are generally long-suffering symptomatically and often painful or disabling over time and often more painful (enhanced) nearer to death. Having been at work on the body for so long prior, these cancers do not generally have an expectation of good outcomes in the elderly regardless of care. It would be very easy (and likely, I believe) that more families than not would have rationalized their elder's condition under the "they've had a good life and are ending their long-standing suffering" logic we often use for psychological defense and would have seen palliative care methods as gentler on the patient (therefore expressed as good or above by 47.7% of respondents whose decedent had hospice, and 43.1% of those using the rating of excellent) even had that meant heavy to possible round-the-clock patient sedation. Contrary to what was included in the commentary, I don't see the results as "somewhat surprising" at all and a rather predictable built-in bias. My comments above are supported by the stated limitations of the study as quoted below and which can be seen at in an easy to read, graphic form. Limitations: 1. Families asked to report on patient's preferences and EOL experience at variable time periods, including years after the death. 2. Cohort restricted to bereaved family members of older patients with lung and colorectal cancers who died by 2011. Findings may not be generalizable to families of younger and commercially insured patients or those who died of other cancers at later times. These are some pretty heavy-duty limitations not to mention the ever present built-in biases. There is also a direct implication that there may be a disparity between the care provided to a Medicare beneficiary patient as opposed to one not on Medicare and, quite possibly, an age component as well. Most importantly and still, this study found that 1 in 5 patients (20%) were claimed not to have had their wishes/preferences honored. 80% compliance sounds good but my concern begs the question... "Do we simply ignore the 20% whose wishes were ignored and say we did good enough simply because we were "perceived" as doing more good than bad?" Thank you, Liz, for adding this study to the conversation.
      • Liz
        Thank you for adding these details. I did not have access to the actual study to see the limitations. Those are significant. Another limitation comes to mind: Families may not know patient preferences or may decide they know patient preferences better than the patient/or justify that their preference is that of the patient, especially if the patient is not in good enough shape to express their preference.
        • That is the purpose of the advance directive and living will. So that the family DOES know when the time comes.
  • Nancy
    The astonishment of the family at this turn of events demonstrates why the different negative scenarios should be discussed way beforehand. If family isn't made aware of what CAN happen, they are likely to keep on believing that 'everything is o.k.'
  • D Someya Reed
    Another Response to Liz (and all) from above...getting to narrow to be readable so moved down here: You're right Liz. I think that happens a lot. Sometimes families change things in the heat of the moment or if they've later decided that they disagree with previous choices made, even if in writing. One of the dangers of giving someone medical power of attorney. That person should be most trusted to carry out YOUR wishes, not theirs or be swayed by anyone else. I've read these before but thought them appropriate to include here. Ken Murray, retired MD from Southern California wrote a story titled 'How Doctors Die' years ago. He later followed it up with 'Doctors Really Do Die Differently' due to comments made regarding the first article. The Post's link is of a reprint so the dates seem odd but it was actually published first in another venue. Here are the links: I suspect he is largely correct even if applied nationwide among doctors. I don't understand though if they can think this way and plan for themselves, why is it so difficult to discuss with their patients? It's not as though they're telling them what to do just giving them their options just as Dr. Murray said he did.
    • Liz
      I have seen those articles about how doctors generally don't choose aggressive treatment all the way to the bitter end; they understand the limits of medicine and the implications for their quality of remaining days. Last May another person who has had the same multiple cancers I have had and we also share the same oncologist, said to me she was afraid she was going to die (wasn't staying in remission with one of the non-hodgkin's lymphomas). She was seeing the oncologist the week after I was and I shared (she asked me to do this) her fear with him because she said she didn't like to talk about that in front of her husband as it stressed him out so was giving her/our oncologist a heads up she might want to talk with him privately and to help her make an opening to do that without hurting her husband's feelings or making him wonder what they were talking about behind his back. She had further chemo after her May visit and it only sort of did some good - some nodes shrank and some grew. She couldn't get in remission enough for a stem cell so it was cancelled while they tried something else. August she couldn't get into a trial soon enough and for the first time the oncologist told her she needed to do something else as he didn't think she'd live long enough to wait for that trial. For the first time he finally talked to her about the fact that she was that sick (which she already knew even if he wasn't admitting it). So then she started another trial. She died a couple of weeks later. Gives me a heads up he is one who will keep trying something, anything up until the bitter end. I like this oncologist otherwise. He is fairly young and likely has some growing to do. Hope he does. When I see him again in May we are going to talk about this whether or not he wants to. Carefully. I don't want to be fired as a patient. Might print these out and leave them for him.
      • D Someya Reed
        I'm so sorry to hear about your friend. It's sad to hear about conversations that don't happen between spouses or significant others as well as between doctors and patients when they absolutely should. Yet, we always come up with some reason why we shouldn't. This lack of discussion is far too common. In the case of doctors, no matter how much information they give you about a procedure or treatment you cannot have informed consent if the patient is being misled about the underlying reason (or that reason is being minimized) for having the procedure or treatment in the first place. Is it any wonder then (I'm looking at you, doctors) that patients turn to the internet? Not to mention, books, magazines, friends, family, or TV infomercials. If doctors won't tell you what you already suspect or outcome you hope for, you're going to go elsewhere to get it then ask doctors for their opinion or why they didn't think of it themselves. It's in our nature. I am horrified to hear that you have ANY concern about being "fired as a patient." I realize that no one wants someone to care for them who doesn't really want to but doctors should not be able to fire a patient except for a very narrow set of reasons. Even then, there had better be an awful lot of proof to back it up. I wish you nothing but the best, Liz.
  • Familydoc
    As a doctor who cares a lot about getting this right, I just have to say that this thread is pretty hard on the docs. I spend a lot of time talking to my patients about end of life planning. I teach medical students and residents how to do this work and am considered are source on difficult cases in my practice. Even so, I find that some patients and families are more ready to hear the news and engage with it than others. Like all physicians I know, I've found myself in similar situations to the doc in the story when I know the oncologist or PCP had all the right discussions with the family. Just recently I cared for a dying patient and no less than four physicians talked with the family and patient about the inevitable course of her illness. I know it happened, I was one of them and consulted two others when I felt I needed assistance. The family was still shocked when their loved one died. Sometimes, it can just be too painful for family members to hear of an impending loss. There's no need for blaming in this situation. We can and should strive to get better, but I think our societal and human fears of death make this a very difficult task for patients, family and doctors alike.
    • Liz
      Yes is probably is hard on the docs... there are good ones out there. Unfortunately docs are human too and some don't like to think about/talk about death, some may be competent but are otherwise jerks, some are burnt out, most don't have enough time to have all the conversations they'd like to have (or at least some of them would like to have)... There are many reasons, some of which reflect poorly on the doc, some poorly on the patient/family and some poorly on the system.
  • smsmpicer
    Being a person who works in hospice, I am stunned by the callousness of this MSW. You are right- she is not the kind of person who should be working in hospice. Not only was she not empathetic, she was not ethical. And I am wondering if she also left out the (required) statement when doing admission that you have the right to switch hospice companies at any time. I am so sad reading this- and want you to know that this is NOT what hospice is about.

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