From a mother: What my child’s oncologist should know

From a mother: What my childs oncologist should know

Please let us know that we’re not alone. We realize that our doctors are not our friends, but telling us that the medical team will be sticking with us during this journey that we were never on board with, is an empowering message when we are at our most powerless.

Show us that you care about our child, too. We know that you identify our child by her diagnosis, but we identify her as our daughter. Let us know that you understand our child and tell us something about her personality that will resonate with us. Talk to our child, rather than just to us, as much as feasible.

Hold off on the scan “show and tell.” Some parents want to see the imaging of their child’s tumor. I know I did — initially. But with recurrences, seeing evidence of the tumor that I was told would ultimately take my daughter’s life was horrifying. Some doctors seemed eager to share the scans — perhaps because it gave them a reprieve from my crumpled, tear-stained face? Ask us first, rather than assume that we would want to see it.

Ban junior doctors from sitting in on an emotional conversation. If you have devastating news to break, ask residents and fellows to exit the room while we come to grips with the ramifications of what you have to say. When emotions are high and we are at our most vulnerable, we don’t want to be politely scrutinized as if we were lab rats — even if it means that those in training might lose out on a one-of-a-kind lesson in patient-doctor communications.

Be accessible by email if you can’t make the phone. We won’t try to “friend” you on Facebook or e-mail you pictures of our cute dog, but some of our questions are best answered by you alone. If our e-mails are short, clear and seemingly important, please respond, however briefly, even if it’s just to acknowledge that we’ve been heard.  When our messages are relayed verbally from nurse to nurse, we worry that by the time they reach you, the crux of our concern has been lost in translation.

Remember our child. If our child is cured, we are bonded to you forever, because you were the one that treated her. If our child dies, we are bonded to you forever, because you were the one that tried to save her. Our relationship with you is paradoxically as intimate as it is distant; you are part of our family and you are the stranger beside us. We know little about you — we don’t know the names of your children, what you like to do outside of the hospital, where you live — but you’ve been there in those fist-pumping moments of glory when a scan has been clear, a tumor has been successfully resected or a drug has beaten a stubborn headache. And you’ve been there when a new symptom has revealed that the prognosis is grim. You’ve witnessed us laugh and cheer and you’ve witnessed us sob.

Remember our child; we will always remember you, probably with fondness and almost certainly with gratitude. If our child has died, we recognize that while the disease ultimately triumphed and the treatment failed, you did not fail our child.

Remember her, please.

Suzanne Leigh blogs at The Mourning After Natasha.

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  • Anthony

    As a graduating medical student, I appreciate your points and will keep them in mind as I start residency. However, I’m afraid your request to “ban junior doctors from sitting in” may have negative consequences. How are we supposed to learn compassionate and thoughtful ways to break bad news without watching and learning from our mentors? Breaking bad news can be one of the hardest communication skills in medicine. Do you really want future doctors to learn that process unaided? Am I supposed to figure out how to navigate difficult conversations by trial and error once I’m an attending?

    • http://www.themourningafternatasha.wordpress.com MomInMourning1

      It depends what you mean by “difficult conversations.” Having a resident sitting in for a conversation about, say, a tonsillectomy or a shunt – few parents would object to that. Having a conversation about a child’s cancer being terminal is something an oncologist should be having with the parents alone. Our need for privacy when we are at our most desperate and vulnerable trumps your desire to witness this excruciating conversation (and hopefully as a doctor you would have the compassion and empathy to know why this is excruciating).

      And what would you hope to gain from it, if a parent does
      not want residents there? Our oncologist always cleared the room before difficult conversations, but had residents been present, I would have been outta there … STAT.

      • FEDUP MD

        I think it also depends upon the relationship of the junior doctors to the patient. As a fellow, I spent far more time with patients during their hospitalization than the attending, and typically had a close relationship with them. Typically it would be the attending leading the discussion (when I was a senior fellow, sometimes myself) and the patient’s primary nurse. While I can understand not having a crowd of random residents and medical students who didn’t know the patient well there as a learning experience, it would have felt somewhat artificial for me not to sit in on these conversations simply because I was “junior.” I am in a field where bad news is not uncommon. I learned a great deal both by listening and by supervised conversations with feedback from my mentors later. I would no more have wanted to have the first day I gave bad news to a patient be the first day of being an attending than I would dream of doing a procedure for the first time being the first day I was an attending.

        • NewMexicoRam

          So correct. No one gets to be “experienced” until one can go through “experiences.”

      • NewMexicoRam

        I’m sorry for your difficult situation, and even though it is comforting for you to only have the attending physician in the room, you could be dooming parents for the next 30 years to have dreadful discussions with their physicians who should have learned how to have the difficult discussions in a caring way by being in the room with you today.

    • Patient Kit

      Difficult situation as it is, as a cancer patient who has gotten excellent treatment at one of NYC’s teaching hospitals, I agree with you on this. Besides being a skilled surgeon, my GYN oncologist is compassionate and has excellent communication skills. From the way he talks to me, his patient, I think he must be an excellent teacher. I’ve told several of the residents who work under him how lucky they are and they agreed. It’s very important for the next generation of doctors to learn those communication skills from those who already have them, especially the most difficult kinds of conversations doctors and patients must have. I feel like it is part of the deal when we patients choose to go to a teaching hospital. I don’t mind residents being in the room with us and learning from my awesome doctor. If it means we’ll have more docs as good as my doc, it’s well worth it.

    • JR

      Step number one to being a good doctor:

      It is critical to listen to patients and understanding their feelings and perspectives. You’ve just read a emotional story from a woman bearing her soul for your benefit.

      Your response is to dismiss her feelings as unimportant.

      When you are in a caretaker role, it’s important to validate the feelings of those you care for. If you dismiss the feelings of the people you care for, they will not listen to you. They will not trust you. If you validate their feelings they will feel cared for. For some patients, just having a someone care for them is enough to make their illness lessened as it invokes the placebo effect: here is someone who is doing something to make me better, someone who is really listening to me.

      • guest

        I think the important thing to remember here is that, although the parents’ grief should be handled empathically, the doctor is actually there to attend to and take care of the child, not the parents. If anyone stops to think about it, working with terminally ill children must be one of the most difficult jobs there is. The oncologist(s) referenced above may have included trainees in meetings specifically to support the parents in maintaining a professional and constructive demeanor, rather than regressing to the point that the meeting becomes about something other than their child’s illness and treatment.

        The doctor is the caretaker of the child, not the parents.

        • JR

          The Children’s Hospital of Philadelphia Center for Pediatric Stress has specific guidelines for families.

          Assess family members’ distress
          Gauge family stressors and resources
          Address needs beyond the medical
          http://www.chop.edu/professionals/pediatric-traumatic-stress/about-pediatric-traumatic-stress/trauma-informed-care-for-healthcare-providers.html

          Why?

          Because medical care doesn’t end with the child’s body. It doesn’t even end with the child. Medical care involves the body, emotions, and mind of the child, and the emotions and minds of the child’s caretakers.

          Secondary trauma is used to describe those that watch others who are harmed. Many doctors suffer fro secondary trauma, just like parents suffer from secondary trauma. I think there is a lot of resistance to recognizing the trauma in healthcare settings because to recognize it in patients means recognizing it co-workers, colleagues… and perhaps even oneself.

          • guest

            Yes, the entire thrust of that program is that parents who are experiencing medical trauma should be referred for their own support/therapy/counseling, and I would wholeheartedly agree with that conclusion.

            In fact, in my own work, I regularly deal with family members who are traumatized by their adult child’s illness and hospitalization. It is not possible for me to personally provide therapy services to those family members, as my primary responsibility to to my patient, not the family member. Focusing too much on a parent’s “crumpled and tearstained face” could seriously distract me from taking good care of their child. But I can certainly identify the stress, empathize with it, help the family member recognize it, and make appropriate referrals.

            The fact remains that I am the patient’s caretaker, not the caretaker of her parents.

          • JR

            Actually no that’s not what their documentation says.

            The goal is both preventing and treating traumatic stress in both patients and the patients family.

            Key: “Preventing”.

            That doesn’t mean “providing therapy” but approaching medical encounters with the training needed to reduce potential trauma.

          • guest

            Having a sick child is going to be traumatic, no matter how careful and caring the professionals are who care for the child. The goal, and the primary focus of the caretaker’s energy, still has to be to provide appropriate medical care to the child. To try and set a goal that the child’s illness not be traumatic for the parents, or that the physician’s energy must be directed towards the parent’s trauma, can only detract from the care of that child, since the child’s medical caretakers do not have unlimited amounts of energy, time and inner resources. A truly caring parent will recognize that their own emotional needs must be secondary to their child’s treatment.

          • JR

            I’m saddened you feel that way. Studies show that emotional health effects physical health. And physical health without emotional health isn’t health at all.

          • guest

            Actually, I feel that emotional health is critically important, and the emotional health of the family is crucial to the health of a child. That’s why I am encouraging us to remember that parents must take some responsibility for their emotional health when they have a sick kid, and stay mindful of the fact that there are going to be limits on what their child’s doctor can do to meet the parents’ emotional needs.

          • JR

            But that’s not the argument in play.

            The argument in play is that the mental health of the parents isn’t as important as a medical students education.

          • EmilyAnon

            The argument in play is the issue of entitlement in a teaching hospital.

            If the reluctant family of a dying patient has to be shamed or made to feel guilty for not wanting to provide a theater for their grief, so be it. According to comments here, the training agenda trumps any sensitivity the patient (family) might have, even at end of life.

          • guest

            Again, I think an important point for families to consider is this: medical trainees are not voyeurs. They do not enjoy watching dramatic family scenes (actually none of us do, since as medical workers we are trained to be averse to drama.)

            What they want, and need, is to see how their teachers deal most effectively with such difficult situations. You can rest assured that a trainee’s attention is focused almost exclusively on watching the attending manage a difficult situation. They are decidedly not deriving entertainment or stimulation from any display of emotion from the family.

            Referring to it as a “theater” borders on offensive.

          • EmilyAnon

            So what’s the bottom line? Would you refuse the family request to send the trainees out of the room?

          • guest

            Of course not, I never have. Furthermore, the request itself is useful information for me about the fact that the family probably has a lower level of coping skills than other families do. That lets me know that I need to look for ways to try and make sure additional supports are in place for the patient.

            The objection is not to families making a request for a specific conversation to be one-on-one. The objection is to the suggestion that there be a blanket “ban on junior doctors.” Any teaching attending would find this offensive. The suggestion is tantamount to saying “I want my child to benefit from the superior care that is available in a teaching hospital, but I think an important aspect of that teaching should be abolished, since it made me personally feel uncomfortable.”

          • EmilyAnon

            I was not endorsing a blanket rule of sending trainees away from any situation in a teaching hospital. Many patients wouldn’t mind, or might not even be aware of their presence in the room. But I did interpret the comments back that the patient/grieving family deserved to be met with guilt laden lectures if they didn’t cooperate. So I decided to play devil’s advocate. I’m glad the air has been cleared. And really appreciate you taking the time to respond to patient comments here.

          • guest

            You are welcome! I am always hopeful that some of these conversations can close what seems like a very big gap in understanding between us and our patients.

          • guest

            I don’t see the argument that way at all. I think part of the difficulty here is that the original writer presented a demand that those of us who are medical educators find difficult to agree with: “Ban the junior doctors from sensitive discussions.”

            That’s a pretty sweeping statement, and not all families are going to have such pressing emotional needs that they cannot cope with having trainees involved in all aspects of their child’s care.

            If the point were to help us understand Suzanne’s own feelings better, it would have been better for her to have focused on sharing them, rather than offering blanket statements on what a pediatric oncologist should or shouldn’t do in a teaching hospital.

            Something along the lines of “when trainees were present during difficult meetings with our child’s doctor, it sometimes made me feel like they were scrutinizing me and being curious or voyeuristic rather than being there to help me or to learn.”

            That could indeed open up a valuable discussion about her own personal feelings, that could be useful to all doctors, especially trainees.

            Opening up the conversation with a demand that trainees be banned is not a request to share her feelings or to let us help her with them. Suggesting that doctors be available after hours by email is likewise a demand, not an attempt to share her feelings. These are really requests to control the circumstances of her child’s care, and so that’s the way they are being responded to.

  • http://www.themourningafternatasha.wordpress.com MomInMourning1

    Just to clarify: This is not about being OK with the attending and not being OK with residents/fellows. Personally I don’t distinguish between the two groups because although the level of expertise is very different, unless our own oncologist happened to be the attending, we did not know any of them beyond a cursory, “Hi.”

    It’s about having these devastating conversations with the oncologist alone — in five years we had built up a relationship of mutual trust. She understood us, was in tune with our way of coping and knew how to approach us. We did not have this history with any other physician.

    I also wanted to point out that I would hope everyone would recognize that there is an enormous difference between telling a patient they have a terminal cancer and telling a parent that their child has a terminal cancer. Not that the former is a walk in the park, but as most bereaved parents will tell you, when we know our child’s time is limited there is nothing we would want more than to have that dx ourselves if it means our child would be well again.

    • NewMexicoRam

      It is a very difficult and emotionally draining time when one has a child with a (potentially) terminal illness. I had a niece die in an accident, so the pain is known very well.
      Parents have the right to request that junior fellows and doctors in training not be involved in the tough discussions. No argument.
      I’m just saying that unless those upcoming doctors can see those conversations, then there really isn’t any way to train them in how to appropriately handle the situations. Maybe everyone won’t allow them to be present, but someone has to or the future for caring is gone. I, for one, want trainees to be involved in as many situations as possible because I know how difficult it is to learn well.

    • guest

      Your child’s oncologist was able to approach you skillfully likely because during her own training, other parents were generous enough to allow her to be present and learn from her teachers and mentors as they conducted difficult conversations.

      Just something to think about.

  • EmilyAnon

    I’m sure there will be patients or family members that will not mind their grief being observed by people in training, but for those that do mind, I would hope there be understanding when to bow out graciously and without prejudice. That’s a learning experience too.

  • JR

    I’m so sorry that you not only had to go through the illness of a child, but that you had to face this with those who really do not understand how to handle the human heart as well as the human body.

    • FEDUP MD

      I don’t think we’re chastising people for their feelings. I think we are pointing out that in our experience that there are skills that need to be directly taught by mentors, both interpersonal as well as procedural, during training. I do a lot of breaking bad news to parents, including that their child has died. I can tell you from experience it is a learned skill, and your natural response may not actually be the best for families. For example, most inexperienced people I see, due to their feeling empathetic with the family and very upset themselves, just keep talking and talking out of discomfort without stopping to let people digest and process or ask questions. They do it because the silence feels uncomfortable. It is not due to them lacking social skills, because in many other situations this would be uncomfortable. It is just that this is a situation where you do not run into it in your normal social skills during day to day life, and most patients and families will not be able to give you direct feedback about what exactly you should do, because they may not know how to parse what was good about the conversation they had other than the doctor was “understandng.” I’ve seen lots of cases where the doctor was empathetic and understanding but it didn’t go well because they didn’t have a certain set of skills to adequately meet the families’ needs in addition to it.

      • JR

        And yet everyone is saying “it’s important to learn how to deliver bad news…” but shouldn’t they be saying “it’s important to learn how to console the family while delivering bad news”?

        By saying “learn how to deliver bad news” the focus is on the provider, not on the one hearing the news.

        It seems to me the students posting aren’t aware that people behave differently one on one then in front of an audience. That screams they lack even the most basic understanding of people skills. Watching people deliver bad news won’t remedy that.

        • FEDUP MD

          The provider needs training in order to best serve the family and patient’s needs. As I indicate above, just being nice generally won’t cut it. It is an unusual situation and requires some skils that one would normally not use. For example, in order to soften the blow of words, I often see inexperienced people use words such as “gone” or “we did everything we could” in lieu of “died.” At something like a funeral, this would be completely the right thing to say to a family. In the immediate shock, many people do not understand you unless you are very clear, although it may seem more cruel to say. Overall it is much crueler for someone to later realize you told them their family member died when they thought you were just telling them they were very sick.

          • JR

            If you go to tell a family their child has died, and you bring with you a batch of 10 2nd year medical students, what did the students just learn?

            The 10 students just learned that you consider their education more important than care for the patient. And its clear from this blog (not just this post) that this is the real lesson they are learning from their medical training.

          • FEDUP MD

            If you note above I have explicitly said that I don’t condone having random people in the room who do not know the patienf there as a learning experience. Is it reasonable to invite a med student or resident who had been deeply involved for the patient’s care for weeks to attend? They likely have spent more time there with the family than anyone else. It sounds as though the original poster did not have any residents or med students who had anything but the most cursory experience with her child, so the feeling is understandable and I would feel the same way. The problem consists of when blanket prohibitions are put on when “juniors” can be involved, it does affect the care in the future. This is the essential nature of teaching hospitals. If no one ever lets junior doctors observe or meaningfully participate in care, than in a few short years you will be cared for by incompetent doctors. There always has to be a balance. The education of future doctors is all about patients- the thousands each will see during their careers.

          • JR

            You know what the trauma informed care response to this post would be? The current responses are “what’s wrong with you! why don’t you know how valuable the experience is to students”.

            Let’s shift it to:

            “What happened to you?”

            Let’s try it.

            “Suzanne, I understand how you feel but it’s such an important part of training for students to learn how to work with care givers and patients when bad news had to be delivered.”

            “I know it’s a sensitive topic, but I’d like to learn more about your experience with receiving bad news. I think there must be a way to be sensitive to the patients while allowing students to learn.”

            Why this response?

            What if she was given bad news in front of 10 medical students? What if the “Juniors” she’s referring to are people who weren’t involved in her daughter’s care, or people who were strangers to her?

            Perhaps if we asked her she would tell us it would have been different if the doctor she was working with (who maybe was a resident) and an attending were the only ones there.

            But we don’t know. We don’t know the answer. No one has bothered to ask.

            That is the difference between our current system and trauma informed care.

          • FEDUP MD

            She did make that quite clear later on, and of course it is understandable. However, when the blanket statements are made “no learners” to an audience of physicians, as recommendation, of course we are going to present why we think this is not applicable to every situation. Nuance was not there in the original statement as well as some of the replies and I think it is an attempt to introduce some shades of gray into what appeared on its surface a very black and white statement. Probably this is a conversation that would be better had in person, where tone and follow up is much clearer than with typing.

          • JR

            The responses were that she shouldnt feel that way (her feelings aren’t valid) and that our training is more important than the way it impacts you.

            That’s not a healthy way to approach a grieving parent.

          • FEDUP MD

            Again, nuance. I don’t think anyone is invalidating feelings. When someone posts that a rule should be as a mother to a doctor that the room should always be cleared of learners, than we are going to point out why this may not be applicable to every situation. If she was used the wording “I was uncomfortable with it,” I think everyone would agree this is understandable. It’s when “we ” is used, implying she is speaking for the whole group of mothers to doctors as a whole. Perhaps that is not what she meant but that is how it reads to many, hence the response. She certainly was clear that she only meant to respond about her own feelings subsequently when talking about showing scans with recurrence, so this may just be an issue with word choice.

          • JR

            Instead of guessing what was meant, why not ask?

            This is social media. That’s the power of social media. Ask.

          • guest

            Patients (and more importantly, patient’s families) need to take some responsibility for how they present their feelings. Using “I” statements to explain how you feel, rather than making demands, is just a basic premise of effective communication. The burden of sussing out what is really on a parents’ mind cannot be the primary task of a child’s oncologist. They are a cancer doctor, not a therapist.

          • JR

            Trauma Informed Care can’t be implemented by one physician, it has to be training that is delivered to the entire staff: Doctors, Nurses, Technicians, etc. It’s a combined responsibility to be sensitive to preventing traumatic reactions.

          • FEDUP MD

            I did not guess what was meant. I went with the assumption that the words as written on the page were the means of communication and that they meant what they said. I think most commentators here agree. Of course, as people we cannot read minds, we can only use tools of communication at our disposal to try to understand the other person. When someone says, “we as mothers are telling you as doctors we want a blanket ban on junior physicians,” the assumption is that that is what is meant. If someone says, “my experience is it made me uncomfortable, take my experience into consideration” was said directly, then I think the response would be very different. After clarification it appears the author likely meant the second, but

          • JR

            The answer to your assumptions was left as a comment on this page by the original author.

            Part of trauma training is teaching caregivers that patients do not speak out if they aren’t asked how they are doing. By asking them they feel that it’s something they are allowed to talk about.

          • Michelle

            Thank you, JR, for teaching these students what they don’t seem to have picked up in clinical training, and for standing up for the parents.

            Although it doesn’t reach the magnitude of a diagnosis of terminal cancer, when my firstborn was just a few months old he was diagnosed with permanent, irreversible hearing loss. I will never forget the way the news was delivered – the doctor stood with us in a busy hallway while my son was in the recovery room, waking up from a test that had been done under general anesthesia. She was accompanied by a junior doctor whom we had never seen before. The setting and the junior doctor watching my reaction made the diagnosis that much worse.

            Doctors in training should never be invited to discussions of such magnitude, unless there is prior consent.

          • FEDUP MD

            I am not a student. Haven’t been for a while. I have been dealing with these situations on a professional level for years as an attending, and by unsolicited feedback from parents, doing well at it.

            Also i am a parent of a child who had a life- threatening illness at birth. Fortunately he is now fine. So I have been to some degree on both sides.

            It still does not change my original assertion that blanket bans on learners in a teaching hospital are not the answer, but that each situation should be considered

          • JR

            Thank you. We can’t improve the system if we don’t challenge ingrained norms of the system.

          • JR

            What we have here is a mother mourning the loss of her child. She’d like to share to her story. What was good. What was bad.

            We have here a mother willing to share not just with one medical student, but with the whole world.

            I imagine there are many other parents who lost their child who would love to volunteer and come and talk to medical students about what went right and what went wrong.

            But the response here is that we shouldn’t listen to them, they are just an ignorant patient. The medical student needs to learn from their attending, no one else can contribute to that learning.

            But we have studies that show that the doctor/patient disconnect is HUGE.

            http://www.medpagetoday.com/MeetingCoverage/MHNCS/44439

            The magnitude of disconnect between patient and physician assessments was one of the more surprising findings in the study.

            “I don’t think it’s unique to head and neck cancer. I don’t think it’s unique to our study. I don’t think it’s unique to medicine,” Vainshtein said. “I think physicians tend to underestimate the effect of their treatment — whatever it is — on our patients.”

            Shouldn’t that gap be bridged by… listening to the patients and learning from them? Listening to the parents of patients? Isn’t this a much more valuable learning experience because it changes our healthcare system to be something better, rather than continue to enforce the status quo?

          • FEDUP MD

            Of course listening to patients is key. The problem is that that is not sufficient for learning to serve their needs best. It is a good part of it but most cannot articulate specific steps a doctor should take to achieve what they want, because they have only their experience on the receiving end once. An experienced doctor can demonstrate and teach exactly how to use patient feelings and experiences to best help patients in the future.
            The fact that you use the words “console” indicates that you do not fully understand the doctor’s job. It is my job not just to console the family, but to ensure in the most empathetic way possible that they have a full understanding of what is/ has happened and to answer any questions or uncertainty. If they walk out without understanding than I have failed in my role. This does not mean I cannot also be a friend- I certainly commonly tear up during these and we have our share of hugs. But that is not enough and is not only what I am there for. Most medical students and residents I know are very empathetic and if their only job was to console, they would be fantastic at it. The issue is combining that with effective doctor-patient communication, which does not come naturally and which cannot be solely taught by only one end, the patient. If no learner is ever allowed to see how experienced doctors interact with patients, than half that learning is gone.

          • JR

            I never said learners should never be allowed to see doctors interact with patients.

            Rather, I suggest a model where we have patients who are seen come back for debriefing. The supervised meeting between patients and students would be primarily to benefit the patient. Then the students and their supervisor would meet and talk about their takeaways, and how their experiences and training conflict with the patients needs and requests. I think that would be a great experience for them.

            I do think doctors need to be trained in trauma informed care in order to make their delivery more effective. Unfortunately, current teaching on doctor/patient relationships don’t include all the research that has been done in preventing trauma. Therefore students are learning outdated methods.

            The brochure for parents I linked advises them to talk to their child’s doctor by saying:

            Say: “I’m feeling a little overwhelmed. It would help if I have someone to talk to.”

            That’s advice to the parent. To the child’s doctor. Not even their own doctor. Not a mental health worker.

            That’s trauma informed medical care.

          • guest

            Right, and as I mentioned below, the appropriate and indicated response to a parent who comes to you with this need is to help them find someone to talk to. That is what the brochure is attempting to help parents seek out for themselves. The language you are quoting above is intended to help parents ask for a referral to therapy, not ask their child’s doctor to spend more time with them processing their feelings.

          • JR

            Actually, if you read the documentation it’s about:
            Preventing trauma in children and their parents. How to prevent trauma in patients and their caregivers and loved ones. Its based on research in this area.

            Unfortunately, the most current research on trauma (it’s only 5 -10 years old by now) isn’t being implemented in medical care yet outside a few locations. It’s mainly being implemented in non-medical settings.

            I’m thinking medical students who haven’t yet interacted with real patients would benefit from talking to real patients… after their treatment. When they aren’t stressed out. It would be a good first introduction to working with real patients that compliments the actors/standardized patients the students work with. It would also be a way to teach trauma informed care to students.

          • guest

            The mother is not really sharing her story, though. She is making a list of things she thinks her child’s doctors should have done differently, and linking them to some vague references to the fact that she had feelings about her child’s illness and death.

            That is entirely different from honestly and completely sharing your innermost feelings, in a way that enables them to be understood and responded to in a collaborative and constructive fashion.

      • FEDUP MD

        On a related note, I will never forget the first time I told a family their young child had died. Unfortunately it was as a new second year resident. This was due to a horrible perfect storm in the PICU one night where we had 4(!) simultaneous codes, and the cardiologist, PICU attending, and fellow had each taken one of the other dying children’s cases, leaving me as the next senior peds doc there to run the 4th. It was a sudden, horrible, gruesome death in an otherwise healthy child which brought many nurses (and myself) to tears later on, and sadly one of those where the outcome was inevitable. I am forever thankful that I had been taught and had seen how more experienced docs had dealt with this before having to walk into a room of family and tell them their child had died. There’s nothing in daily life that can prepare you to do this properly. BTW, years later with much training in this skill, I generally receive very positive feedback from families and nurses about how these conversations went. I don’t think I have particularly special empathy or social skills, but I learned from some of the best.

  • guest

    Sometimes support groups are very helpful. Also, if you have persistent symptoms that conventional talk therapy is not helping, you may want to consider getting an evaluation to see if medication might be useful.

  • Patient Kit

    I don’t think anyone participating in this discussion has been dismissive of Suzanne’s feelings, nor have we chastised her for how she feels. That certainly was not my intention in responding. I think we can all agree that watching a loved one suffer from and die of cancer is emotionally wrenching. I see no lack of empathy for Suzanne in this thread.

    That said, an important and difficult issue was raised and I don’t think it’s a simple matter of which is more important: the emotional wellbeing of a current individual patient’s family or the education of new doctors that will effect the emotional well being of many future patients and their families. It is not a simple question of either/or. They are both very important.

    I’m not even going to get into the issue of whether it’s harder to lose a child than a spouse or sibling or best friend because I think the whole I idea of competitive pain and ranking which kind of loss is worse is fruitless.

    As with all major issues that must somehow balance the rights and needs of the individual with the rights and needs of the group, there are no absolute easy answers. Patients and their families must be treated with empathy but, at the same time, new doctors must be taught how to do that. And there are some things in life that cannot be truly learned by reading or hearing about them. There are some things that, both doctors and patients, can only really “know” by firsthand experience.

    I’m not a doctor. But as a cancer patient myself, my heart goes out to both Suzanne and to all the doctors who have treated me and Suzanne’s child and to all the future oncologists who want to learn to be good doctors. As a patient, I try to keep in mind that all of my oncologist’s patients have cancer, not just me. And I hope oncologists keep in mind that a cancer diagnosis is never a routine thing to any patient. I think that, whichever role we play, doctor or patient or patient’s family, the main thing is for us all to stay human with each other. There’s no way to make any of this easy.

    • guest

      Beautifully said. Thank you.

      • Patient Kit

        Thank you. I’m just so glad I found KevinMD recently. There are so many important and interesting discussions going on here.