She was thin, white skin stretched over bones like worn parchment over old sticks being rhythmically blown in the wind as her chest rose and fell, each time with what seemed like a major effort. Incongruous with the rest of her body, her abdomen was distended, a balloon that looked dangerously close to popping, also rising and falling with each breath. She moaned softly and looked at me.
I introduced myself, told her I was a surgeon, and continued, "Your oncologist asked me to see you about your belly pain."
"Go ahead," she croaked, hardly acknowledging my presence in the way that patients who had become so utterly used to being poked and prodded multiple times a day by doctors that they no longer thought it odd or unusual anymore.
Before entering the room, I had perused the woman's chart. She had been diagnosed with colon cancer three years ago and undergone an apparently successful resection. Unfortunately, she had had mesenteric lymph nodes that had been found to have tumor in them; so she then endured adjuvant chemotherapy and come out of it thinking that she was home free.
She wasn't. A few months ago, she started losing weight, although she was also on a diet. She thought little of it initially but had been thinking of seeing her doctor because she was concerned that maybe she was losing more weight than she should have been when her nausea and vomiting struck.
Cancer is a patient and clever foe. Even after being cut out with steel and electrical fire and blasted with toxic chemicals, all too often a few cells remain, and a few cells are all it takes for the tumor to reassert itself, which is exactly what this woman's tumor had couple of days prior, although she hadn't known it yet, when persistent feelings of nausea, vague abdominal pain and bloating, and obstipation had led her to seek medical attention, as she noticed that she hadn't had a bowel movement in several days and hadn't passed flatus in at least a day. Her doctor admitted her, of course, as nausea had become more and more intractable as her abdomen had grown and grown She was hydrated with IV fluids, and a nasogastric tube was inserted to relief what had become incessant vomiting, and there had been some decrease in the size of her belly. A CT scan was ordered as soon she was adequately hydrated, and to no one's surprise it showed a high grade bowel obstruction.
Would that were all it showed! I had thought as I had pulled up the images on the hospital computer system.
It also showed carcinomatosis, a feared way that colorectal cancer all too often recurs, in which tiny tumor deposits spread along the peritoneum, the membrane that covers the organs within the abdomen. The deposits had spread and grown and coalesced into masses ranging in size from golf balls to cannon balls. I exaggerate, but not by much. Worse, her liver was studded with dozens of tumor deposits that practically filled its entire substance, and there were several small masses in her lungs. Cancer, that disease that she thought that she had beaten, had had the last laugh.
I questioned her a bit more about her history and then examined her. Her abdomen was quite distended, but she had no signs of peritonitis. Not surprisingly, she had an Sister Mary Joseph lymph node on physical examination and Blumer's shelf on rectal examination. She clearly had not only carcinomatosis but widespread metastases. As is all too often the case when a surgeon is called for these situations, there was little or nothing I could do for her. Certainly there was nothing I could to do relieve her obstruction enough that she could ever eat again. Wading into an abdomen of carcinomatosis is not something to be undertaken lightly, as even in the best of circumstances the chances of relieving the obstruction and getting the patient out of the hospital and back to eating regular food are not great, even worse if the carcinomatosis is widespread. It is definitely not something to be undertaken in a patient whose life expectancy due to widespread metastases will be slow short. It's generally only to be done if there is no evidence of disease outside of the peritoneal cavity (because metastases in liver or lung portend such a poor prognosis) and if the surgeon, in his or her judgment, has a reasonable chance of doing some good with an acceptable rate of morbidity and mortality. Truly, few things drive home the limits of surgery more than a case like this. Still, her oncologist (or, more likely, the oncology fellow) had called to ask us to take a look, and I was obligated to discuss the patient's situation with her honestly.
But first I had to know one thing. I sat down in the chair next to her bed, looked her in the eye, and leaned in as I said, "Has anyone discussed the issue of code status with you? What would you want done for you if things got really bad?"
"No," she said. "What do you mean by code status?"
Then it hit me. No one had discussed with this patient just how dire her situation was; so, as used to happen all too often when I still took general surgical oncology call, it fell on me to break the news to her. Think about it. It was the first time I ever met this woman, and I had to explain to her that her disease was terminal, she didn't have much time left, and that there was probably nothing I could do to relieve her bowel obstruction. The only thing I could do would be to suggest that a gastroenterologist try to place a percutaneous gastrostomy (PEG) tube, so that she wouldn't have to die with a tube in her nose, or, if the GI doctor couldn't do it because of abdominal wall tumor masses, to undertake a surgical placement of such a tube. Palliation, that's all that could be offered. I had to explain that, if I were to operate, there would also be a not inconsiderable chance that she would never make it off the ventilator and would end up spending her last days in the ICU, hooked up to a ventilator and other machines. Was that the way she wanted to go out? Sometimes such discussions even happen in the emergency room when an acute deterioration leads the patient to seek emergency medical care, which is arguably last place on earth they should happen.
If the patient above were the only one presenting like that, I could write it off as a fluke, but she wasn't. In fact, she's an aggregate of several patients with terminal cancer whom I've been asked to see over the years for acute abdominal complaints. Others have included patients with even more extensive metastatic disease who developed signs of acute intra-abdominal infection, a situation that is in a way even more difficult to deal with. I intentionally constructed the hypothetical patient above as only having been diagnosed with metastatic disease in the last couple of days. One might be able to cut her doctors some slack for not yet having had "the talk" with her. Also, she probably did have some time left and could go into hospice and have a chance at a decent few weeks or months to get her affairs in order before her disease claimed her. However, I've been called to see patients with widespread metastatic disease whose dismal prognosis has been known for a months at the time they present with an intra-abdominal catastrophy of some sort: peritonitis or dead bowel, for example. For such patients, the decision not to operate is in essence a decision to let the patient die now rather than weeks or months from now. If the way hasn't been prepared with a discussion beforehand with the patient about what she wanted her doctors to do in just such a life-threatening catastrophe, end-of-life issues are much more traumatic and difficult than they need to be for the patient and her family, as well as for her doctors. Moreover, if the doctor hasn't discussed the issue with the patient, you can be sure that the family won't be prepared for an acute deterioration in the patient's condition and will flounder over what to do if the patient cannot voice her wishes for herself. Aggressive intervention may be undertaking, up to and including an operation, even though it would almost certainly achieve little.
I don't mean to be criticizing oncologists. Many are incredibly good about discussing frankly end-of-life with their patients. However, all too many are not, and now there's hard evidence that shows just how bad we as a profession do at dealing with these critical issues in oncology. A study presented at the ASCO Meeting a couple of weeks ago showed:
CHICAGO, Illinois (AP) -- One look at Eileen Mulligan lying soberly on the exam table and Dr. John Marshall knew the time for the Big Talk had arrived.
Eileen Mulligan's doctor told her upfront that there are no good treatment options left to try for her cancer.
He began gently. The chemotherapy is not helping. The cancer is advanced. There are no good options left to try. It would be good to look into hospice care.
"At first I was really shocked. But after, I thought it was a really good way of handling a situation like that," said Mulligan, who now is making a "bucket list" -- things to do before she dies. Top priority: getting her busy sons to come for a weekend at her Washington, D.C., home.
Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive.
New research shows they are wrong.
Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.
Like Gruntdoc, I had always suspected as much, ever since I first started specializing in cancer surgery and getting called to see patients like the ones I discussed above. Why do we physicians fail to have frank talks with terminal illnesses about their true prognosis, choosing instead to couch our discussions in euphemisms and vagueness often designed to avoid a direct discussion of the uncomfortable issues involved? Why do we surgeons sometimes offer patients with stage IV cancer big operations to try to reverse only temporarily terminal progression of their disease? We're not talking aggressive tour de force operations intended to cure, which can sometimes be justified, either. I tend to think it's because, despite all our training, we are human and fear death as much as anyone else. We fool ourselves into thinking otherwise because we see it so often and tell ourselves we've become inured to it. Also, even in 2008, we still appear to labor under a myth that discussing these issues with patients will hurt them somehow, perhaps by crushing their hope or inducing intractable depression. This study suggests that such fears are indeed myths:
Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.
If this study is correct (and in my heart I strongly suspect that it is, although I won't be able to evaluate it fully until it is published), we are doing our patients a grave disservice. One thing that I wonder about is how the authors may have taken into account the deadly power of denial. It is quite possible that the percentage of patients who actually did have "the talk" is much higher than 1/3 but that some patients did not recognize or accept what they were being told. Even if it's two-thirds who have had "the talk," it is far too low a number. Unfortunately, there is still a strong belief among some physicians that talking about death with terminally ill patients will somehow harm them by taking away their hope or inducing depression as part of the steps of grief described by Kübler-Ross. If this study is correct, such fears are overblown:
Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices.
"Boiled down, it's 'Talking about dying will kill you,' " she said. In reality, "people crave these conversations, because without a full and candid discussion of what they're up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it."
It's even worse than that. Showing just how entrenched these myths are, physicians in California are resisting a state law being discussed that would mandate such discussions:
Some doctors' groups are fighting the bill, saying it interferes with medical practice. But at an American Society of Clinical Oncology conference in Chicago earlier this month, where the federally funded study was presented, the society's president said she was upset at its finding that most doctors were not having honest talks.
"That is distressing if it's true. It says we have a lot of homework to do," said Dr. Nancy Davidson, a cancer specialist at Johns Hopkins University in Baltimore.
No law should be necessary to compel physicians to do what they should just be doing as a matter of compassionate care based on humanistic values that respectfully and honestly inform the patient of what medical science tells us to be true of their prognosis. Indeed, as the article points out, nearly all patients with cancer want these conversations. They crave them and often express relief when the topic is finally faced squarely. I've only rarely had this experience, unfortunately, because usually when I have to have this sort of converasation with a patient it is as a stranger with whom neither they nor their family have a prior relationship at a time they are in dire straits, like the case described above. Sometimes the family even perceives me as the one who is taking away the patient's last hope by suggesting that an operation would not be in the patient's best interest.
We all die. There's no getting around it, and as I have passed out of my youth and firmly into middle age I can no longer pretend that I'm somehow exempt from that immutable fact of nature. For patients with a terminal illness for whom time is short often the greatest gift we can give them, if not hope, is the gift of truth: To tell them, with all the compassion and understanding that we can muster, that we have run out of potentially curative therapies and that all that's left that we can offer is palliation. Doing so not only shows respect for their autonomy but allows them to plan for what little time they have left and to take steps to make sure that they do not die in an ICU, hooked up to a ventilator, doctors futilely trying to hold back the inevitable.
More like this
Excellent post, Orac. I hope I never have to have a discussion with my doctor like you described, but if necessary, I hope my doctor is frank and honest.
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Wonderful post. Not pretty thoughts to think about but seemingly all so true. Even as I too "have passed out of my youth and firmly into middle age" I find this type of discussion both incredibly 'scary' and incredibly helpful.
...tom...
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My first reaction to hearing that a doctor might withhold information about something as fundamental as my chance of survival makes me very upset. "How dare he, the patronizing, pompous prick!" Much of our life is run under the reasonable assumption that we will live for many years to come and this affects a lot of our decisions. To ease a her conscience, a doctor denies us the ability to properly deal with the end of our life? I can understand that no one wants to be the bearer of bad news, but withholding is worse.
If a patient asked one of these doctors about their prospects for survival point blank, what do you think their reaction would be? What do you suggest that we, as patients, can do to ensure we are getting this kind of information in a timely fashion?
On the issue of denial, when my father was told that a tumor had essentially destroyed his kidney, and that the kidney would need to be removed, he didn't hear it. We sat in the oncologist's office, and the oncologist explained very carefully what was at stake. Hours later, when we went to the surgeon, my dad asked the surgeon, "What can we do to save the kidney? The oncologist said there was a possibility to save the kidney." I had to correct him. The oncologist had said no such thing. The kidney had to come out, but he had himself hoped to keep it, and so had interpolated saving the kidney into the words of the oncologist.
Hope is a tricky thing.
Really excellent post. Do you think the CA bill is motivated in part to reduce extraordinary end of life medical costs, especially when (due to lack of "the talk") the patient is unaware their case is truly terminal?
Susanne
What a great post! I think you strike close to the crux of the matter when you write:
Unfortunately, far too often, physicians - and others - conflate nothing more curative with nothing more at all. So perhaps we need to reframe the conversation and say that care is being shifted from one stage to another - from curative to palliative, or a term I personally like - to comfort.
I don't like the idea of "running out" of options as the framing of the conversation. Rather, transforming the aim of care to that of support and comfort is no less a legitimate goal of treatment and care, and so it should not be viewed as a last resort - it simply comes at the end of the life span.
The hospice folks are really the experts in the framing and delivery of end-of-life issues and care goals. They would serve well as teachers for those of us who spend most of our energies in the curative arena.
Parent to child, or adult to adult?
My organic mechanics are usually taken aback (even my GP, who should know better) when I address health issues with them as an adult looking for information on my options and asking for quantifiable alternatives. Bless 'em, they get over it and after that things go well.
I strongly suspect that's because most of their interactions with patients are much more of the parent/child variety than adult/adult. Not so much because they want to be parental as because when threatened we all want to revert to the comfort of childhood, with Big People to take care of us and Make It All Better.
Which is horribly unfair to our caregivers, because of course they can't aways. Add to the fact that nobody wants to tell a child bad news, but somewhere deep down that "parent to child" model includes the corollary that "children can't understand" -- I don't want to imagine the emotional cost to the caregiver.
A while back we had a fatality at our hill, and I honestly don't know whether it was harder or easier for us that we couldn't tell the family that the patient was dead (not our call to make, legally.) I don't know that it was better for the family, either. I do know that as soon as the helicopter was off the ground they rerouted from trauma center to organ recovery.
Keep those living wills current, people.
Yes.
There is not much more to say but wholehearted agreement.
I'm an ER doctor and the worst time to have to have this conversation with patients (or worse distraught family) is when the patient is failing on BiPap and looking at intubation. With the possible exception of pro wrestling and a code in radiology there is almost nothing worse in the known universe than this.
I agree "No law should be necessary to compel physicians to do what they should just be doing" but I also feel that a law is still a bad idea. Each case is different and making it a matter of law (with inevitable lawsuits) is just shoving more government bureaucracy into the mix.
But it is critical to properly inform patients. If the odds are not good, why put a patient through this hell?
This is the most frightening possibility for me, to drag from treatment to treatment, watching my body deteriorate in a futile search for 'cure'.
Excellent post. I've observed this situation several times from the sidelines as a relative or friend of a dying patient, and it always astounds me that the physicians often appear to be in greater denial than the people they're treating.
I very much agree with Annie's sentiments. Hearing it as "there's nothing more we can do" almost seems like abandonment, what, should the patient go home with no guidance?
Rather, switching to a different arena (hospice/palliative care/end of life counseling) with assurances that CARE will continue, with the goal of making things go the best that they can (pain management, keeping mental functions as long as possible, etc) sounds more... comforting, to me. The goal can then be to have the best death possible.
That is the problem: How to tell the patient that you can't cure her without sounding like you're abandoning her. The problem is, a lot of docs view failure to cure as really not being able to do much else. Hospice care and palliation are undervalued, but they're very important.
My Mom's sister was ill with late-stage stomach cancer. My Mom had traveled to England to visit her. She had never been, but always wanted to see Ireland.
The doctor and hospice care had always kept her informed. When asked if the trip was wise, there was little discussion. The doctor said "of course". Wouldn't she rather die doing that than in hospital? They were stocked up with pain killers and sent on their way. They had a wonderful trip, and she died two days after returning.
Without the frank care leading up to that discussion, they probably would never have even proposed the option and that wonderful trip would have been missed.
There is *never* "nothing more we can do." You can keep the patient comfortable. You can manage his/her symptoms and pain. You can provide emotional and spiritual support for the patient and family. There is always *something* you can do, even when restoring the person to health is no longer an option.
When patients are seemingly in denial, do you guys ever ask yourself what's really going on?
Maybe the patient has low health literacy. Maybe they haven't previously been given enough information about their condition. You have to have the right information, after all, in order to be able to ask the right questions. Maybe they're too overwhelmed for bad news to really sink in. Maybe they've had a bad experience with another doc and they're afraid to ask the hard questions outright because they fear they'll get a blunt, compassionless response.
Everyone has different ways of coping. Sometimes people just mentally shut down; it takes longer for them to process what they're hearing and you have to be patient and give it to them in bits and pieces over time. Sometimes people go into denial because that's what helps them manage the fear. Sometimes people just aren't ready to hear the words; they'll be ready eventually, but not right now.
I had cancer in my 30s so I know what it's like to be facing these issues. One of the things that upset me most was the amount of information that was withheld from me, that I didn't find out until much later when I got copies of the medical record. I don't know, maybe it was just a misguided sense of compassion... but it was a shock to learn that my initial prognosis was so shaky. No one ever told me. And I think I had a right to know.
What kind of training is there -- or should there be -- for this? I've heard about both ends of the spectrum -- the doctors who can't give the patient the truth, and those who present the truth far too bluntly. Kicking off with "you're going to die" isn't exactly a great way to proceed, for example (someone I knew heard that from an oncologist. She found another one. She knew that her prognosis was grim, but she was determined to hang on as long as possible, no matter how much she suffered, so that she could be alive around her young children until the last moment). But I think what's being discussed here is the problem of patients being completely in the dark about what lies ahead. But even if the oncologist in my anecdote thought this woman hadn't a clue of what was going on and needed to know, he just didn't go about it in a very thoughtful way. My guess also is that many of us, irrespective of occupation, hate having to be the bearer of bad news. Others are much better at it. The thing is how to turn naturally varying abilities into professional standards.
My mom had already had the talk with the oncologist, had already called off the chemo and put her affairs in order. The oncologist was on holiday when she developed hypercalcemia and quickly deteriorated. She stayed in the hospital for five days because doctors were unwilling to let her go home; she wasn't their patient, so it wasn't their call, even though we were standing right there asking when she could be discharged to hospice care. Every day, the nurse: "Can she get up?" She's fucking comatose, so no. Every day, more IV fluids, more antibiotics, more poking at her trying to get her to sip breakfast drinks. Her oncologist came back, and two minutes later my mom was discharged. She died the next day at home.
Not only do doctors need to be honest with their patients, they need to talk to their colleagues as well. There was no reason my mom had to stay in the hospital when it was clear this was it: she was never getting out of bed again, and in fact on her third day in the hospital she had said her last word, and from then on acknowledged only pain.
We have been dying for millennia; you'd think we'd be better at it than we are. If I - too young, not ready, and fucking devastated - could face the fact that my mom was dying, why can't those dispassionate professionals who traffic in this stuff all day do the same?
It's interesting to see a bit of this from the other side.
In my support group for women under 40 with breast cancer, the women often have angry responses to hearing about a doctor telling one of our members that their days are coming to an end (even if it's obvious). They feel that no one should lose hope, and that doctors are just arrogant and often wrong when they make these kinds of predictions.
Sure, we have some women in the group who have outlived their doctor's predictions, but most seem to go so quickly, before they switch from "fight" to "acceptance" modes.
It's interesting to me that there are almost never posts in my group supporting a doctor's prognosis. Most posters prefer to tell the woman not to believe her doctors, and to "keep fighting." I suppose it's only human nature.
Have you ever heard of the Trial Lawyers' Association?
I am not surprised a large percentage of medical caregivers avoiding these talks. To the best of my knowledge there is no 'formal' training for this. ( may differ by country ) and next to everybody has a problem with it.
I ( as a lay-person ) remember avoiding talk of death with friends and family who I knew were dieing. Partly this was because I had no way of knowing if they knew. Partly because by ignoring their death we can continue to ignore our impending death. ( I certainly want to pretend that I need not worry about it because it is 40 to 50 years off. )
Yes, any good doctor SHOULD have those talk(s) with the patient - however it is also very difficult.
I don't think a law will lead to better results: better training might. ( these days though I wonder if even priests who SHOULD be trained in this are: I know of some who would avoid comforting the dieing if they have a choice. )
I am though in favor of training for this. And standard psychological backup for caregivers.
Orac,
Based upon my personal experience both as family member and as patient, docs are often terrible at having these sorts of conversations. Perhaps it's that they hate to admit failure; maybe it's just because it makes them stare their own mortality straight in the face and realize they're just as human as their patients. All I know is that I've also seen it from yet another angle as part of my job in medical records, and even just from that you can almost hear the horror and trepidation when a physician realizes their patient has a potentially or likely fatal condition, especially, for some reason, cancer. There have been times I've seen stuff like this and in some warped way I found myself thinking, "Maybe it was a good thing I never got the chance for med school...this kind of thing would have driven me into the psych ward..." I certainly admire the forthrightness and strength of those docs who DON'T try to sugarcoat a bad diagnosis, and yet, sometimes I think there are a few who tend to be overly blunt with such matters. The delicate balance between the two is perhaps one skill that takes a long while to perfect. I don't think I could have ever chosen oncology as a specialty if I had managed medical school; fortunately there are some like you who can handle that kind of thing without crumbling to bits.
Eep! It never occurred to me.
When we lose a patient, there's a formal debrief for the team. All of us -- and one-on-one support as indicated. We have this because we have (wait for it) organizational science-based reason to believe that it makes a difference, both to us personally and to our ability to perform out duties.
I'm guessing that the people who face this kind of stress far more than we do are expected to "tough it out" and be above human emotional responses to tragedy. If that's true, no wonder disfunctional adaptations are common.
Orac, you're letting your humanity show *grin*:
Those are educational and professional biases/values issues, and they can be addressed by the clinical and academic experts in the palliative/end-of-life arenas.
In the olden days, I worked with many a physician who refused not to code every last patient, regardless of appropriateness, diagnosis or prognosis. It takes education, case exposure and acknowledgment about appropriate end-of-life care alternatives and treatment goals to affect permanent change.
Viewing an inability to cure as a medical failure just isn't supported by the evidence. Humans have a 100% mortality rate. It's absolutely appropriate to alter the treatment goal from cure to comfort and to partner with patients in deciding when and how best to make that transition. In no way is that patient abandonment.
I would argue that it's very empowering for patients and their loved ones. The difficulty is that with it often comes anticipatory grieving and that can feel like loss and failure. In one respect, the physician IS losing the patient, but only to natural lifespan processes, and not due to abandonment, negligence or carelessness.
Sometimes, ya gotta hug the docs, too. It hurts to lose patients. Period. (((ORAC)))
Nobody likes the idea of having to tell someone else that they are terminally ill. It's one of those things where anyone with any empathy at all can easily put themselves into the shoes of the person who needs to be told.
And that's the point. The patient needs to be told.
Holding out false hope where there is none would be worse.
That being said:
Orac writes : "But first I had to know one thing. I sat down in the chair next to her bed, looked her in the eye, and leaned in as I said, "Has anyone discussed the issue of code status with you? What would you want done for you if things got really bad?"
It's a question your notional patient had to be asked.
I'm not sure I could summon the courage to say it.
Excellent post. Excellent. I can't tell you how many times I have stood by the gurney as the poor ER doc has had to give the grim news to the family of a patient who is dying of a terminal illness. A conversation that should have happened days, weeks, months earlier by their own doctor who has an established relationship with the patient. It's not fair to the ER doc. It's not fair to the patient who was robbed of a chance to greet death on their own terms and it is not fair to the family to be robbed of the chance to make every moment count. I seriously doubt anyone would choose to die on an ER gurney in a noisy, crowded, impersonal ER while being assaulted by a multitude of painful procedures.
Wonderful post Orac. Here's something worth reading -
"German photographer Walter Schels was terrified of death, but felt compelled to take these extraordinary series of portraits of people before and on the day they died. His partner Beate Lakotta recorded the poignant and revealing interviews with the subjects in their final days."
http://www.guardian.co.uk/society/2008/apr/01/society.photography
Orac, an an ID specialist I have exactly the same problem.
Some of our haem/onc docs have a reputation for only stopping chemotherapy when the last nail is hammered into the coffin.
I've lost count of the number of times I've consulted on terminally ill haem/onc patients, where I've (usually indvertently) been the one to tell them that they've got incurable cancer. Rarely if ever has the DNR order been discussed, and if it has, the team often thinks that pointless broad-spectrum antibacterial / fungal therapy, costing thousands of dollard daily, is appropriate for "palliation".
With my HIV patients, I always try to have the discussion well ahead of time (when their is time).
In my opinion, all haem/oncs should do a compulsory rotation through palliative care.
Human reactions to impending death are all over the map, and docs being human(!), it's not at all surprising that they have a full range of reactions to the impending death of a patient.
Since "the talk" needs to be had, and human nature can't be relied upon to ensure it takes place in the absence of incentive/coercion, a legal requirement seems reasonable.
I still remember the way the Doctors passed my Mother around when her MS was clearly in its final stages. It got to the point were she didn't have any doctors looking after her because none of them wanted to tell her what we all already knew. The medical profession has dramatically failed to address caring for terminal patients. We were just lucky enough to get her back home to spend the last few weeks with her family.
Another excellent, thought-provoking post.
I read it yesterday and it took until today for me to realize that you defined part of the problem in your sentence, "Has anyone discussed the issue of code status with you?"
WTF? I'm a scientist, but in a field unrelated to medicine, and I really would have had no idea what you were talking about, had I been the hypothetical patient to whom you were speaking.
It's not the main issue here, but it is important, and that is the tendency of physicians (you could substitute most scientific specialities here, I realize, but perhaps none are so uniquely personal as medicine) to use jargon when speaking with their patients. If you meant, "Has anyone discussed what you want done if your heart stops and you need to be resuscitated?" then that's what should have been said. If that wasn't what you meant, then I have just illustrated the problem.
Thanks for raising this issue; it needs to be addressed.
As an aside: As a young mother, my physician announced that my son had bilateral medial otitis. Scared the crap out of me, until I found a dictionary in which to look it up. I will never understand why he didn't just tell me that both of my son's ears were infected.
Another excellent, thought-provoking post.
I read it yesterday and it took until today for me to realize that you defined part of the problem in your sentence, "Has anyone discussed the issue of code status with you?"
WTF? I'm a scientist, but in a field unrelated to medicine, and I really would have had no idea what you were talking about, had I been the hypothetical patient to whom you were speaking.
It's not the main issue here, but it is important, and that is the tendency of physicians (you could substitute most scientific specialities here, I realize, but perhaps none are so uniquely personal as medicine) to use jargon when speaking with their patients. If you meant, "Has anyone discussed what you want done if your heart stops and you need to be resuscitated?, then that's what should have been said. If that wasn't what you meant, then I have just illustrated the problem.
Thanks for raising this issue; it needs to be addressed.
As an aside: As a young mother, my physician announced that my son had bilateral medial otitis. Scared the crap out of me, until I found a dictionary in which to look it up. I will never understand why he didn't just tell me that both of my son's ears were infected.
An answer of "what are you talking about?" would be sufficient to inform him, and the question wouldn't be quite so blunt for most patients (and for those of us who understand the jargon, the news shouldn't be such a surprise.)
Yeah, it's more mulberry-bush choreography but at least it's not outright running away from the question.
"I read it yesterday and it took until today for me to realize that you defined part of the problem in your sentence, "Has anyone discussed the issue of code status with you?"
WTF? I'm a scientist, but in a field unrelated to medicine, and I really would have had no idea what you were talking about, had I been the hypothetical patient to whom you were speaking.
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"An answer of "what are you talking about?" would be sufficient to inform him, and the question wouldn't be quite so blunt for most patients (and for those of us who understand the jargon, the news shouldn't be such a surprise.)"
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Yes, but...
Many patients, especially elderly ones, are acculturated to doing what the doctor tells them and not asking too many questions. I don't see this changing overnight, not with the current elderly population.
Many patients simply have a hard time being assertive. Maybe they lack the confidence, or maybe their health literacy isn't very good. Oftentimes people will pretend they understand - even when they don't - because they're afraid they'll look stupid. And don't forget that even someone who's normally very articulate and lucid can have a hard time speaking up when they're sick/in pain/under a great deal of stress.
And a lot of times the atmosphere is so hectic and the physician is in such a hurry that it precludes having any kind of conversation at all.
"For those of us who understand the jargon..." What percentage of patients might this be? And how does this help the vast numbers of patients who don't understand the jargon?
In Orac's hypothetical case, the patient *did* ask what this meant. And then, hypothetically, he was confronted with explaining the situation on the spot, to a patient who didn't know him and who should, ideally, have had this discussion much, much earlier. Which is what I took his point to be: these discussions need to take place upstream, before things deteriorate to this point.
Thank you, Orac, for bringing up a very important topic. If I'm ever in a situation where I think the doctors are getting evasive, I will remember to ask for the direct approach! I would certainly prefer to be able to plan, and I think most people would.
@PJ
Yes, these discussions need to be held before the need arises---but seldom are. That doesn't obviate the need to discuss them in a crisis.
Many of us do this every day. We don't like discussion end of life issues with people who don't know us, but not to do so would be even more cruel.
This is an issue, too, that affects all of the professionals working with a patient. As a speech-language pathologist, most of the time I've spent working in hospitals has been spent in evaluating swallowing safety. I've had to work closely with doctors and dieticians as part of the decision-making process about whether or not a patient can eat, and whether or not a feeding tube should be placed. In a lot of cases, it's a decision that depends as much on the prognosis as it does on the actual ability of the patient to swallow safely. (I'm not going to tell someone who has only weeks to live that she can't have any thin liquids if good coffee is among her greatest pleasures. No way.) In cases like that, I need to be able to speak frankly with the patient and/or the family about specific risks and benefits of following one course over another, which is impossible if they aren't aware of the prognosis. My role is not to inform patients of what their prognosis is, and many times, I've had to end those conversations by telling the patient to speak with their doctor about the issue.
Wow. Excellent post, excellent responses. Nothing more to add, just wanted to add my back pats.
As a Stage IV colon cancer patient who was initially diagnosed on my birthday in July of '04, I had a totally different experience. The great doctors in my state had no problem letting me know that I had 18 months to live, but that I could die at any moment. And yes, I had several doctor's opinions.
I was in total denial, even more so since I had a colonoscopy as a fluke and my gastroenterologist tried to talk me out of it. He said, I was too young, I had no symptoms, my insurance wouldn't pay for it, and the original doctor who suggested it to rule out Chron's or IBS instead of my suspected food allergies was probably not a good doctor.
Thank goodness that I was in total denial, had they not been so adamant that I had no hope, my adrenaline may not have given me the energy to do a lot of research and find some doctors in another state that were willing to save my life. I signed up for a Stage II clinical trial and have had no evidence of disease since September of 2004.
These doctors told me in a very compassionate manner, one even gave me a hug. I thought they were very nice and I do not fault them. There is a good way to tell a patient that they are going to die, however, some of us, as I still am, are in denial.
In February of this year, my aunt was diagnosed with brain metastasized melanoma. She has seven tumors in her brain and at least thirteen in the rest of her body. The hospital's oncologist... I still have mixed feelings about how he treated my aunt.
After leaving her initial surgery to remove the largest tumor, in her frontal lobe, the oncologist informed us that, if her cancer went untreated, she had roughly three months to live. He was recommending palliative care. Treatment, he said, would probably have little effect, and he was unaware of any clinical trials at the time. He also informed us that, if there were any, by the time my aunt qualified for them she would probably be too ill to participate.
My mother would not accept this answer. She consulted more doctors until she found one that provided her with an answer that she liked. Her current oncologist is a good one, who specializes in metastisized melanoma. Yet, I think, I like him less than the first. He found several clinical trials, yes, but he never informed us that he thought she was too sick to qualify. He found her a chemo pill that crossed the blood/brain barrier, but never honestly informed us of the odds that it would take.
My mother, I think, found the ignorance refreshing- finding herbal and alternative 'cures' to use along with the chemo, 'visualization' tapes that told the patient to visualize the cancer being destroyed. She, and the second oncologist, filled my aunt with false hope, to the point that my aunt refused to let her friends visit. She wasn't going to die any time soon, she said.
Now, she is lying in hospice. Sepsis has left her too weak to walk, tumors in her lungs have left her unable t breathe without assistance. And it is at such short notice that few of her friends can make it down to LA to visit her. I am glad that she fought the cancer as best she could, and I would not change that, but I wish the second oncologist had been frank, and I wish that we had listened to the first.
My mother was diagnosed with lung cancer in 1984. Right off we were told that her cancer was of a particularly aggressive type and that the odds were against her surviving her disease. We were assured that everything that could be done, would be done, to help her fight, but acceptance of the situation was important as well. I found this realistic approach comforting. All of us appreciated the straight forward information and the fact that her oncologist talked to us together as a family. Against the odds, my mother survived for another fifteen years.
In 1999 she was diagnosed with lung cancer again. It was of a different type, she was told, and not a recurrence of the original disease. The difference in her care was remarkable. First of all, she was misdiagnosed for well over six months. But that is another story. I lived in a different state at the time. I saw my Mom in September of that year, a couple of weeks after her diagnosis, and just days before her scheduled chemotherapy. I saw her again in November. I was surprised as how much she had deteriorated. It was apparent to Mom, to me, and to my Dad, that Mom was dying. But as of that time, neither her physician nor her oncologist had talked to her about end of life care. She had been told the chemo was not effective, and the doctors had scheduled more to begin after the holidays. Mom said she told the doctors she did not want more chemo, but they were trying to convince her otherwise. The appointment to begin was still on the books.
I encouraged my parents to get home care, later to be hospice care when needed. Which they did. My mother wanted a DNR. Just before Christmas, my mother started to have difficulty breathing despite the oxygen. And my father got scared and called the EMTs instead of the hospice nurse. They intubated her. I got the call from Dad that Mom was in the hospital. Dad said that he was told that she was still intubated, but stable, and that her family did not need to hurry to see her. She will be with us for days, if not weeks yet, he said. I insisted on talking to her doctor. I got a call from his nurse. The message was the same: don't worry she's okay for now. My husband did not agree and bought an airplane ticket for me for that night. Thank fate for his instincts, my Mom died about an hour after I arrived.
So because of her doctors' negligence to be truthful, my Mom died in the middle of the night, in the hospital, with a tube down her throat. She was not quite alone, Dad and I were with her, but this is not how she wanted things at all. My charge is, not only did the doctors in this case fail to inform their patient or her family of the true state of her condition, they were in greater denial than the patient herself. They failed to assess the situation correctly. And they failed to listen to their patient's wishes to discontinue treatment. Though I suppose Mom settled the issue of whether she would continue treatment in a very final way.
Now I read that my Mom's story is all too common, so common in fact that a law has been introduced in California, my Mom's state BTW, to force doctors to do the right thing. So what happened between 1984, when the care and information was given compassionately, but straight forward; and 1999, when the doctors failed so miserably; to 2008, when lawmakers are ready to enact yet another Patient's Bill of Rights to include receiving the truth from their doctors? It is interesting to note that the years 1984 and 1999 represent different generations of doctors. And the years from 1999 to 2008 almost another. What exactly is happening in medical schools these days?
Orac, fantastic post, and more doctors should be like you.
And on a related note, I don't think it's moral to go through numerous futile and highly expensive measures on patients who are pretty clearly gone.