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When A Daughter Dies

324 pointsby jvilaltaover 12 years ago

25 comments

enduserover 12 years ago
I lost my sister to cancer 9 years ago when she was in her early 20s and I was in my teens. Her experience with the medical system was humiliating, futile, and expensive. My parents have never fully recovered emotionally. It has taken me years to integrate the experience, and I still have ghastly memories of the pains she endured recovering from unnecessary surgeries. When I read something like this i feel how much I would like to see a change. It's only partly a techological change--it is also imporant for us as a people to let go when nothing can be done, not to make things worse out of a need to be seen doing something. Unfortunately when a panicked parent is demanding that something be done to save their child, someone will be willing to do something even if the first person knows that nothing can be done.<p>When it is my time to die I intend to fully engage with the experience of dying, and not to numb the experience with knife wounds, drugs, and over-stimulating hospitals. Until then I intend every day to live fully, with great sensitivity, and to remember that each day I live is one my sister did not have. There is no entitlement to health or longevity; some things cannot be predicted nor controlled.
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mcmattersonover 12 years ago
This hits close to home. I came within a hair's breadth of losing my infant daughter to cancer just over a year ago, and a few things come up in my thoughts:<p>- Not all medical systems are the disaster described here. We elected to move back from the US to our native Canada to undergo treatment, and our experience in ward (pre and post-op as well as on the oncology floor) was a dream (at least given the circumstances). We experienced nothing but exemplary inter-disciplinary cooperation, compassion for the patient (and family) experience, and a professionalism driven by clinical need rather than liti-mitigation. These qualities were exhibited even more strongly during the initial phases of treatment post-discovery, which unfolded along a timeline similar to the one discussed here.<p>- Academic hospitals <i>are</i> exhausting. My spouse ended up being the real hero in this story (she was still breastfeeding at the time, and only one parent was allowed to overnight in the room). My job was to make sure she and our daughter had recovered enough each day to make it through a night of vitals, endless beeping, and the occasional overnight chemo administration (don't even get me started about that).<p>- The need for patients and their families to drive the narrative of their hospital experience and be their own champion is critical. I had worked in healthcare for many years before this nightmare began (my old office was at the hospital across the street from her room) and knew the system very, very well. We divided up responsibilities so 'I looked outward, and [my spouse] looked inward', meaning that I spent my time making sure that the relevant referrals happened, that medications were administered on time and on dose, and so on. My wife looked inwards towards our daughter, making sure she was fed, entertained, and comfortable. This setup worked very well for us, and was a likely contributor to our level of care.<p>- The power of parents to be strong in the face of terrible (often inevitable) odds is truly inspiring. We were lucky enough to know with reasonable certainty fairly early on that we would one day be leaving the hospital and resuming a normal life. Many, many families we met were not so lucky. To see a parent express joy and love in the face of such long and terrible odds is a truly unique experience. I myself am a measurably better parent for having witnessed it.
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dandrewsover 12 years ago
I was struck by the amount of care that was seemingly influenced by fear of litigation. An ambulance driver diverted to a closer e/r despite having a physician onboard. A nurse wouldn't sanction ice chips without the admitting physician's chop. Exhausting and time-consuming tests needlessly repeated.<p>I once asked a veterinarian acquaintance of mine why he hadn't become a physician. "Wouldn't you rather drive something fancier than that pickup truck?" I needled, gesturing out the window at his old F150. "Yeah" he replied, "but those guys spend most of <i>their</i> time doing paperwork. <i>I</i> get to practice medicine."
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javajoshover 12 years ago
&#62;The purpose of this brief chronicle is not to criticize the practice of medicine.<p>Perhaps that wasn't his purpose, but that was the result. And it is a scathing, justified criticism, especially coming from an experienced doctor.<p>My father died of lung cancer, and we went through similar experiences with the health care system.<p>Before claiming that something is not a criticism, we have to ask whether or not we can imagine a better outcome, ask what is getting in the way of that outcome, and then make a change. This could be something small, like moving patients around less, and with less resistance. (The purely <i>informational</i> resistance in medical care is appalling, and this story shows it's real human cost. Electronic patient records is not about assuaging "people who can't be bothered to fill out forms".) Or it could be something huge, like revolutionizing what late-stage cancer patients, and their families, expect, and how they will be treated.<p>If you get late-stage cancer, the health insurance company should hand you $100,000 in cash, a large supply of morphine that can be easily self-administered, and a ticket to Hawaii. Huge bag of weed optional. The message is clear: you're going to die soon, so make your peace with it. Talk to your family.<p>My father fought until he fell unconscious, his personality ravaged by whole-brain radiation and chemo, in complete denial. He never got a change to face his sentence with courage, and he never really talked to me before he died.<p>So yes, the practice of medicine needs to be criticized.
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VBprogrammerover 12 years ago
I don't want to de-rail the conversation too much but this line brought home to me one of the most sickening injustices of the civilised world - “When the chemotherapy does not work, you will have to finish the job.”<p>No one should have to plead with their father to end their life early, this should be a choice that anyone can make without fear of consequence to their loved ones. This should be a well established and regulated part of terminal illness.
noonespecialover 12 years ago
In the thankfully few times I've had to endure hospitals, I've always been struck by how unbelievable primitive what they're doing actually is. Sure there are some genuine technical miracles (dialasys, pacemakers, etc) but I always get the distinct impression that most of it is window dressing; a kind of theatre to make it seem like they're more in control and much less helpless than they really are.
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citricsquidover 12 years ago
He described her as a "previously healthy 50 year-old daughter" and then she went from feeling weird to death in a month? I had no idea cancer could be so aggressive, is it 1 in a million that it can be this aggressive (from showing symptoms to death) or is this something common? This would explain why early diagnosis is so emphasised, I still didn't understand how much it could matter.
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brudgersover 12 years ago
Stage four cancer? These are things I've learned from almost twenty years as a "hospice spouse."<p>It's probably time to call hospice, not the "We can beat this oncologist." It's probably time to write a living will and a sign the DNR. It's probably time to decide how and where you want to die.<p>It's most assuredly time to decide how you want to live the rest of your life.
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nnqover 12 years ago
Not to be insensitive (I've had a few encounters with cancer myself, from both the p.o.v. of a healthcare professional and from that of a relative/friend of a patient), but WHY is this on the front page of HN?! The story is (unfortunately) very typical and repeats time and time again in all parts of the world... but this type of description really brings no new information to "the anti-cancer game"... I know it touches everybody's emotions and stuff, but is this really the place to have these conversations?
lostloginover 12 years ago
Your point number one occurred in New Zealand too. And the US is pressuring the NZ government to abandon its very successful drug purchasing agency as part of a free trade agreement. Having one agency purchase drugs for 4 million people creates a fair bit of bargaining power, which US companies do not like.
tokenadultover 12 years ago
Steven D. Levitt's father Michael Levitt<p><a href="http://www.med.umn.edu/gi/faculty/vamc/home.html" rel="nofollow">http://www.med.umn.edu/gi/faculty/vamc/home.html</a><p><a href="http://www.mayoclinic.org/news2009-rst/5207.html" rel="nofollow">http://www.mayoclinic.org/news2009-rst/5207.html</a><p>is a medical doctor and academic researcher in medicine at the University of Minnesota. I used to file his grant applications into the office file drawers as a duty of my part-time job while pursuing my undergraduate degree. Michael Levitt is perhaps the world's leading authority on intestinal gas and still has an active research program in diseases of the human bowel. He indeed has seen many patients at a research hospital over the years, the same hospital where my mother worked as a nurse for most of her career.<p>Dr. Levitt writes in the submitted article, "Overnight admission to the hospital is recommended for 'observation' and rest prior to the trip home. Fifty years of experience have taught me that admission to an academic hospital is not restful. I have stopped counting the patients who want to be discharged to get some rest." I have an immediate family member who was given excellent care at the same academic hospital Dr. Levitt knows so well. My relative is in excellent health now decades after that treatment. But indeed, even with best care, the patient experience at a research hospital is not restful, as world experts on the patient's case vie with medical students and a variety of other health science trainees and practitioners to learn from the patient. When a case is puzzling, as was the case of my relative, research-oriented practitioners are curious about how to understand the case, trying to find established, verified practice to help the patient, and otherwise working "empirically" (an ominous word--to me--used by my relative's main doctor to describe a procedure he attempted when he wasn't sure what to do next) to do whatever they can to help.<p>As the father of a daughter, I can hardly imagine a rougher kind of news to hear. Another immediate relative lost a fiancee to cancer years ago, and that relative's memories of that time are full of frustration. The various kinds of cancer are still so varied--as mentioned in the article--that there is essentially NIL prospect of ever having a general treatment that will be an effective first-line treatment for most forms of cancer. Instead, there will continue to be surgical treatment for come cancers, a growing variety of chemotherapies for a variety of cancers, in the best luck genome-matched to vulnerable cancer cell strains, and radiation treatment for other cancers.<p>Ultimately, though, we will all have to learn to die better,<p><a href="http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/" rel="nofollow">http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how...</a><p>because we will all eventually die of something. Meanwhile, if you are a parent, this submission is a reminder to cherish your children while they are here, and if you are a medical researcher, as Michael Levitt is, this is a reminder to continue to strive for better understanding of health and disease, while remembering the patient experience as new tests and treatments are devised.
philwelchover 12 years ago
My father spent much of his last year of life in hospitals. It was a frustrating experience as well.<p>As far as the expenses went, he had Medicare in addition to supplemental insurance as a retired Marine. So he paid nothing out of pocket. I can definitely understand how this would add to the frustration of the experience.<p>A huge problem is that no one is actually in charge of a patient's treatment. The individual doctors were quite good, with maybe one or two exceptions, but there was never enough evidence of actual coordination between them for me to feel very confident. I saw him on a daily basis, but much of my time was spent staying on top of what half a dozen doctors and nurses were doing or planning to do at any given time and keeping everything coordinated. I worry about people who end up in the hospital without anyone else around to watch over them.<p>Hospitalization can be a very frustrating and disorienting experience, especially for older patients. The thing about hospitalization is that it's essentially a form of captivity. You could write a good psychological horror story that took place in a hospital, and it wouldn't be too far from reality.
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VMGover 12 years ago
Very sad, very scary.<p>What is the cost-benefit ratio for a routine MRI scan every six months?
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jostmeyover 12 years ago
An awesome book titled "The lives of a cell" by "Thomas Lewis" delved into the problems of Medicine (among other things) in the later 70s. He was amazingly prescient about the problems that Medicine faces today. He also offered some wonderful solutions for fixing Medicine.
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jeffehobbsover 12 years ago
Heartbreaking. I hope for a cure for cancer in our lifetimes.
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akg_67over 12 years ago
Very sad and heart-breaking. While reading the story, I couldn't stop imagining myself in his daughter's shoes and wondering "what would I do if I was in her place?"<p>Would I struggle and suffer in the hopes of living a few months longer or accept the fate and go in peace sooner. This reminded me of discussion with my wife during will preparation about how long should I be kept alive before plug is pulled.
newbie12over 12 years ago
We are all working on the wrong things. How can society not be spending far greater percentages of GDP on health care research? Yet the medical establishment, supported by Congress, operates as a guild that keeps people/innovation out, and the system wastes billions of dollars a year on futile treatments in the last year late in life, instead of finding cures.
sireatover 12 years ago
Selfish question here: can one actually screen reliably for most cancers from age 40 to say 60 and actually do something about it?<p>That is say, do as complete as possible cancer screening every 3 months?<p>The worst seem to be the ones like pancreatic cancer, you have a very little chance of catching it before it has spread.<p>I just want to see my daughters grow up that is all.
platzover 12 years ago
I suffered a mini-panic-attack halfway through reading this, and had put my head on the floor until the nausea passed.
gbeesonover 12 years ago
Great read and for myself, someone who is not part of the medical community though who is a father of a daughter, I can imagine the professional and personal frustration that must have been felt. Thanks for the write up - could not have been easy (even clinically) to put together.
fabiandesimoneover 12 years ago
Oh wow, this brought back some painful memories. My mom died of lung cancer 3 years ago (in a third world country)<p>I can't begin to tell you the things my family and me had to put up with.
velarover 12 years ago
Effective treatment against cancer can be found outside the USA, not inside. Eg: See <a href="http://www.lef.org/magazine/mag2012/nov2012_Innovative_Laser_Therapy_01.htm" rel="nofollow">http://www.lef.org/magazine/mag2012/nov2012_Innovative_Laser...</a>
maskedinvaderover 12 years ago
very touching and heartbreaking read..
johnx123-upover 12 years ago
FWIW, my Indian friend says there's a medicine for cancer in South India with Siddha. When I searched <a href="http://en.wikipedia.org/wiki/Siddha_medicine" rel="nofollow">http://en.wikipedia.org/wiki/Siddha_medicine</a> some editors seem to have removed references to cancer from the article.
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thrwaway1over 12 years ago
This reminds me of the story of Dr. Ben Carson, a famous neurosurgeon who also teaches oncology at John Hopkins. In 2002, he was diagnosed with prostate cancer and successfully underwent traditional treatment.<p>However, Dr. Carson has stated publicly, both at conferences and on radio interviews, that he believes he was largely cured by a controversial holistic treatment called glyconutrients.<p>However, due to legal liabilities on the company's part, they banned all testimonials and would threaten lawsuits to anyone who publicized this information.<p>20/20 did a story on glyconutrients, disproving them based on glycobiologist Dr. Ronald Schnaar from John Hopkins School of Medicine. Dr. Schnaar said, "All of the sugar building blocks that we need in our body are made from the most common foods we eat."<p>Contrary to this, Dr. Carson says we do not get these simple sugars from our natural diet and said that his family, his employees and everyone he knows uses glyconutrients with great results.<p>He said he considered not having traditional surgery but he didn't want others mistakenly following his path to the detriment of their health.<p>Dr. Carson is not a glycobiologist. However, he is the Director of Pediatric Neurosurgery at John Hopkins and a colleague of Dr. Schanaar. He's been awarded the Presidential Medal of Freedom and had a film made about his life story starring Cuba Gooding Jr.<p>But none of this information about his alternative cancer treatment is widely known. Not one word on his Wikipedia page (<a href="http://en.wikipedia.org/wiki/Ben_Carson" rel="nofollow">http://en.wikipedia.org/wiki/Ben_Carson</a>) nor on the page about glyconutrients.<p>It's disappointing there's no unbiased scientific research to explain what is factually true. And it's unbelievable that such a high profile cancer survivor could make these claims with virtually no one knowing.<p>Dr. Carson's speech <a href="http://www.youtube.com/watch?v=ROzftYwJihg" rel="nofollow">http://www.youtube.com/watch?v=ROzftYwJihg</a><p>Dr. Carson's Story in the Dallas Weekly <a href="http://glyconutrientsarevital.blogspot.com/2006/08/dr-ben-carson-glyconutrients.html" rel="nofollow">http://glyconutrientsarevital.blogspot.com/2006/08/dr-ben-ca...</a><p>Related Local News story on Baby Hadley <a href="http://www.youtube.com/watch?v=oK3U4mrqslk" rel="nofollow">http://www.youtube.com/watch?v=oK3U4mrqslk</a>
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