I think that is the hardest question I have ever been asked. The emotional weight that goes along with asking how many days are left in a child’s life is staggering. I have been asked this question many times during my career, and I still don’t know how to answer it.
Some doctors answer this question based on disease-specific statistics. For example, since most patients diagnosed with a brainstem glioma die within a year of diagnosis, some will tell the family of a patient who receives this diagnosis that the child has less than a year to live.
Some doctors answer this question based on personal experience. It is personal experience that has led me to dread this question the most. I would like to share two of these experiences to illustrate why.
It was a Monday night. I was home having dinner with my family when I was paged by the resident covering our inpatient unit. My patient had just completed an MRI, ordered to help us determine why he had lapsed into a coma. The MRI had just been read, and the radiologist had called the resident with the result: not only had my patient’s tumor grown substantially, but it was causing an “uncal herniation” (this is when a part of the brain is compressed, often by blood or a tumor, cutting off the blood supply to vital structures and often rapidly leading to death). Since the family had already decided not to pursue further treatment of their child’s cancer, the progression was not a surprise, but I went back the hospital immediately to talk to them about the herniation, since that was a sign that their child could die as soon as that very night. The previous week, when asked how long they had left, I had estimated several weeks, so this change would come as quite a shock.
Picture Posted By Permission
When I got to the child’s room, we spoke at length about his prognosis. His parents asked me how long they would have with him. I answered honestly that I thought he would die within days, and that he could possibly die within hours. The next morning, when he was still alive, we started to arrange a discharge with hospice care. It was Friday when he was finally able to go home.
That was 52 days ago, as I type this. Since discharge, my patient has regained consciousness, resumed eating, and is considering an exercise program to regain some strength. He is on his second hospice company. My estimates of his lifespan were both way off base.
Picture Posted By Permission
Two weeks after my Monday night conversation, another patient of mine was admitted to the hospital for end of life care. After a couple of days in the hospital, his mother asked me how long he had left. I told her that I had no idea, and shared with her the story of the patient with the herniation, who I thought would die within days and who was still alive almost 3 weeks later (at that point). I told this mother that, based on my experience, the best I could do was to guess how long she had with her son. She really wanted an answer, though, so I guessed for her. I told her that her son’s lifespan could be measured in weeks. Probably not days, certainly not months or years, but weeks. He died three weeks later.
I suppose sometimes I do guess correctly.
Related Posts:
I went in to say "Good bye"
When My Patients Die
Oh, by the way...
20 comments:
Always a tough question. I don't envy you (or them).
Our son had local oncologists who worked well with his neuro-oncologist at NIH to provide excellent care. For over two years they were involved with our family, and they were greatly appreciated by us. Since our son died in December, there has been no official contact between us. No one came to the hospital the night he died, no one attended the visitation or service, no one offered to go over the autopsy report with us, etc. (We finally just went to medical records and picked it up on our own about a month ago.) Since we have regular contact with our NIH physician and have even been back to visit (though it's out of state), we find the contrast quite amazing. We know our son's physicians are people, we know they need to find ways to cope, but is there a way for us to somehow break the ice with them? For two years they were among the most important people in our lives, and now it's as if they have fallen off the face of the earth. We received one e-mail from one of the oncologists who was out of town when our son died. She offered her condolences and said she would like to see us when we are ready. We responded to her note and told her we would like that very much. She has never responded. We ran into one of the other physicians elsewhere and felt quite awkward, and we have not seen the one who was on service the night our son died. I have done my best to think this through from their perspective, and it makes no sense to me.
Thank you for any insight you may be able to offer.
Once again--I apologize for getting off topic!
Great post....I often wonder this about my aunt, as you know. It's hard. In times of uncertainty, we want definitive answers, to plan, to anticipate, to start building the armor up around our heart so it hurts a little less when it happens. But we can't get those answers, which is even harder.
Jaime, you're absolutely right... and the need to have some time frame to prepare is exactly why I told the second mother something. I couldn't keep saying "I don't know" because, even though I DIDN'T know, I had this rough idea, and the rough idea helped her with her plans.
DIPG Mom, no need to apologize for being off topic. I don't have a good answer to your question, though. I try to go to a viewing or a funeral for each of my patients, and I have always invited families back to review autopsy results when they become available. But keeping in touch is hard, and I have to say that it's only a very few families that I remained in touch with for any length of time. Partly it's a defense mechanism on the doctor's part to not be too emotionally close... and I'm sure for each patient/physician pair the answer is a bit different. I'm sure this doesn't answer your question, but I hope it helps a little.
Wow! I am so glad to have stumbled on this blog! I am a peds onc nurse at UNC in North Carolina. That would be the dreaded question, and always most painful when it comes from the child themselves...you never forget the first time you are asked!
DIPG mom: I am saddened to hear that you have lost touch with the team. I can tell you from the nurses perspective, that we LOVE it when our families return to see us, drop a card or an email, or call. Any kind or connection! We help families go through one of the toughest things a family ever has to deal with, and this process stays with us forever. We were discussing this on my floor just this weekend. Some of us attend funerals/viewings, others of us don't. For the ones that do, it seems to be the one last time they can offer the support they have offered since diagnosis. For the others, though they would like to continue to offer their support, they feel that they provided their support when it was their time, and they think the funeral is the time for family and friends to take over. They also often feel, that the presence of the staff may make the funeral more painful as we are often synonymous with difficult memories. I strongly encourage you to reach out to the team if you want to remain connected. It is very difficult from our perspective to recognize which famnilies may want to remain in touch, and which families may not want to. I hope this helps, and I am sorry for your loss.
Kellei - what a small world! I am taking prereq's at UNC and applying to the nursing program for January! I would love to hear more about what you do here at UNC!
(sorry, David, for co-opting the thread!)
To get back to the original topic - such an conflicting issue! We get a lot of education about Kaplan-Meier curves, OS and PFS numbers etc. But how to turn these numbers to the living days for the individual patient.
Sometimes it really feels that statistics are as good as a flip of a coin when it comes to individuality. And that's the way it should be, because the numbers are always averages, medians or means of a bigger group.
This is hard to explain to the patient (and especially to the relatives), though. Medicin is not an exact science.
No, medicine is not an exact science, and you're right, GynOnc, sometimes it feels like statistics are useless numbers on a piece of paper - biostats that don't really mean anything. But I think that's where the *art* of medicine comes in, for the patient and especially the relatives. In truly taking care of the patient and family, and actually going over all the stats and how they apply (or don't). Unfortunately, I have personally seen too many doctors lose that art, which adds to the difficulty with this question.
How to apply statistics (derived from a group) to an individual patient is very tricky. One approach that I was taught when I was a fellow was to remind a patient/family member that a patient is not 78% cured. The individual is either cured or not... either survives or does not. If we cure 95% of kids with low risk rhabdomyosarcoma, that is of no comfort to the parents of the 5% of kids who die.
I tend to give families fractions, rather than percentages, because it somehow feels less precise and therefore conveys a better sense of the uncertainty that comes with applying group statistics to an individual.
I'm not sure either of those approaches is the "right" one. There probably isn't one "right" answer to this... what works for one family may not work for another. I think that's where the "art of medicine" comes in... figuring out how to appropriately individualize care and this sort of discussion to match what the patient and the family need.
i can def relate to this. i remember the doc telling my mom my sister only had 3 more weeks to live. she lived for 3 more months! life is unpredictable. well...u can predict but u may not be right :) my mom does always tell this story though and I think she does still feel a bit of indignation bc of the early death sentence.
I was there at Hopkins on that "monday night" when Dr. Loeb delivered the sad news. I cannot begin to tell you how lovely and empathetic and compassionate and caring Dr. Loeb was to me and the family. How could he possibly predict what can only be described as "a miracle?" Working in hospice, I know how difficult it is to answer the question "how much time do I have?" I also know how much the family wants to know a time frame. You do the best you can and, Dr. Loeb, you were wonderful.
Interesting topic. As a parent of a 17 year old diagnosed a year ago with Gliomblastoma Multiforme, we were told that she has a 10% chance of living until the age of 18. I appreciate the honesty of the doctors and she also is aware of this information. We do however not dwell on the numbers but just are thankful for each day that we get. I have mixed feelings about giving families statitics like these because if one focuses on them, then they can be quite paralyzing but on the other hand, it is a question we all ask. We are so grateful for the doctors and nurses we have met, as so appreciate their caring and compassion and knowledge.
Birdie
Calgary, Alberta
Very interesting post. As I always thought, it does not matter if the mortality rate is 5% or 95%, if your loved one dies, it matters 100% to you. I usually tell patents,"I can tell you that 90% of patients who have similar condition do not make it more than 3 months but I can not predict if your loved one will in the 90% group or the 10% group."
Lung Cancer or Mesothelioma is tragic. That is why I cannot advocate enough for people to recognize the signs and know the Mesothelioma Symptoms. Please educate yourself, and don't think that just because you weren't a smoker or haven't smoked in years that you are immune from Mesothelioma.
I know this sounds cheesy but optimism sometimes is the best medicine.
I am the mom of the first patient Dr. David wrote about here. My son lived almost three months after that fateful Monday night. He died July 30 -- on Day 88. Our family will be forever grateful for the incredible gift of those 12 1/2 weeks and the quality of the time we shared. We'll always be grateful, too, for the compassionate way Dr. David conveyed the devastating news about the uncal herniation. His unflagging honesty and optimism make him not only a terrific doctor, but also a trusted friend.
We believe only God holds the answer to the question how much longer? Same for the beginning of life - pregnant moms always want to know the due date. We as humans cannot be sure of the arrival or departure times. We may estimate but we cannot pinpoint the date and time.
It must be vary hard when faced with that question as a doctor.
Hi my name is Marcelo Contreras I’m a medical student from Universidad Católica del Maule, Talca , Chile. I found the blog very interesting blog due to is about a very controversial theme and hard to deal with. As future doctors we will have the responsibility to inform our patients and them relatives difficult situations, like delicate diagnostics and the rest of time that they have left.
How to deal with this situation is a question that we ask to our selves’ from the beginning of our career, there is not an exact formula, due to that every person has a different way to deal with situations.
The blog content is consistent, besides treat the medical subjects from an informal perspective than the most of the medics, so you can approach the people to the medical things even without know something about medicine. Congratulations…Regards.
Hello Doctor David Loeb, my name is Claudia Ramírez Vielma and I'm a medicine student of Universidad Católica del Maule in Talca, Chile.
I want to thank you for the great work that you do with this blog. Personally I think it's very creative and interesting the way that you explain your medical experience.
I'm so interested in the oncology field and to know about the stories of your patients and your experience being a pediatric oncologist is very valuable to me. Specifically I'm grateful of this post, because reflects a difficult reality in medicine and mostly in oncology. Keep the great job with your blog and good luck in the future.
Post a Comment