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Two Timelines

Debi Santini

Timeline One

Day 1: For over thirty-five years my strong, spirited spouse, Carlo, served around the world in the Air Force. Now retired from the military, he still serves at the air base as a civilian security police officer.

His neck hurts. A lot. He blames the pain on the unbalanced weight of the bulletproof vest that Uncle Sam added last year to the uniform he proudly wears every day.

Even though Carlo is a military veteran, he does not use the VA program for health care.

On this day, Carlo calls his longtime doctor because the pain is preventing him from working, and his hands have started to shake.

The receptionist says that Doc has no openings for eight weeks. Instead, she schedules Carlo to see a physician’s assistant in three weeks.

Day 21: The PA orders x-rays and ibuprofen and tells Carlo to return in four weeks. Doc has an opening in five weeks, so we schedule that instead. X-rays at the hospital, then on to the pharmacy. Carlo takes the first giant pill in the car, hoping for relief.

Day 30: Carlo has called several times to ask for x-ray results. Today someone finally calls back to say that the films show arthritis, and that they’re sending him for physical therapy.

Day 56: We are checked in at Doc’s office and anxious to see him. Carlo’s pain is now so severe that he can only stay upright for maybe thirty seconds at a time. He lies on the waiting-room floor for forty-five minutes, praying for his name to be called.

Doc reads the radiology report for the first time: There is a distinct step-off at C2 and C3 of unknown etiology. Further imaging is recommended.

Translation: the top two vertebra in Carlo’s neck aren’t lined up properly, for reasons unknown.

We are confused. No mention of arthritis? What could this mean? No answers.

“The report recommended further imaging, so let’s do that,” I say.

“We haven’t tried conservative measures long enough,” Doc says. “Increase the drugs. Continue PT. Come back in two weeks.”

“No one ever returned my calls asking about PT,” Carlo says.

Doc checks the record: PT was noted, but never ordered.

Day 69: It’s the New Year, and we’re back to see Doc. Carlo feels lucky to have squeezed two PT sessions into the center’s holiday schedule. Still, the pain in his neck is worse, encompassing his whole head now.

Doc says that PT takes time to help, so stick with it and return in two weeks.

Armed with advice from our brother-in-law (a radiologist who lives 350 miles away), our sisters (both critical-care nurses) and physicians from the medical school that employs me, we’ve decided to stand our ground this time.

“I have a really, REALLY bad feeling about all of this,” I tell Doc. We refuse to leave until he orders an MRI scan. Doc isn’t happy, but he eventually complies.

Day 73: The scan takes place on a cold Friday afternoon. As the images appear, everyone jumps to attention. When it’s over, the radiologist enters and tells us that Carlo’s C3 vertebra has been completely shattered by a five-centimeter mass that is displacing the spinal cord and invading C2. He has spoken to Doc, who agrees that Carlo must be admitted to the hospital to stabilize his cervical spine and have more scans.

Radiology transports him to the ER, where a dismissive physician conducts a cursory neurological exam in the hall, then leaves Carlo there for six hours. No scans, consults, admission orders or pain relief.

Finally, a nurse tells us, “Since it’s the weekend, you’ll be better off at home.” They hand Carlo a paper directing him to see a neurosurgeon, give him a strip of white foam to Velcro around his neck and tell him not to stumble or bump his head.

Stunned, confused and terrified, we cautiously drive home. I give Carlo an extra pill to try to get some control of the pain. Then we sob.

Day 78: The neurosurgeon orders a CT-guided needle biopsy and promises to call with the results in three or four days.

Day 92: We called after five days, but they had no results yet. Now, fourteen agonizing days after the biopsy, a nurse calls and tells us that Carlo has a type of cancer known as sarcoma–but there’s good news: it is not metastatic, so it hasn’t spread from somewhere else in his body.

She says the neurosurgeon doesn’t believe the tumor is operable, but wants Carlo to get another opinion. So they’ve scheduled an appointment for him with another surgeon in three weeks.

Three weeks???

I call the second surgeon’s office and tearfully plead. They move the appointment up to the next week.

Day 93: I pick up a copy of the final, official biopsy report.

High Grade Metastatic Sarcomatoid Carcinoma.

It’s not sarcoma. It is metastatic. We scour the internet, but Dr. Google is virtually speechless. Dr. Neurosurgeon doesn’t return our frantic calls.

Day 101: The second surgeon sadly shakes his head and sends Carlo home.

For twenty-eight days, all of the doctors involved in Carlo’s case have known of the tumor. The biopsy report says that there is more cancer, but no one has looked for it. I’ve failed to get anyone to return our calls.

“What did I ever do that they won’t help me or even call us back?” Carlo asks.

This crushes my heart. So I break the rules and email the doctors, begging for someone to take charge. Doc responds, promising to get tests ordered.

Day 113: Several days of scans have brought us to an oncologist. His verdict: the cancer is in too many places, and it’s not clear where it might have started. He recommends radiation and chemotherapy to try to slow the cancer down and buy Carlo more time. Overall, the outlook is very grim.

Day 127: Second opinion: very weird cancer, very rare and aggressive. Carlo has maybe a few months. Exactly what the first oncologist said–but we’re shocked, because it took just two weeks to get this opinion, at a major cancer center 100 miles away, when it took almost four months to find out anything from our own doctors.

Day 128: Carlo has accumulated six months of paid time off, during which he can keep his health insurance. To authorize this, the air base requires that he submit a form signed by a doctor. I deliver the form and a preaddressed, stamped envelope to the oncologist’s office. They promise to get it signed and sent right away.

Day 155: Radiation was a breeze, but the toxic chemo drugs have brutalized Carlo. Barely able to stand today, he prays that the treatments provide a miracle.

Day 165: Peculiar neurological changes prompt a scan of Carlo’s head and neck. The radiologist who initially found Carlo’s tumor comes to tell me that Carlo’s neck is unchanged, but that there is a large tumor in his brain. They have no way of knowing if it’s new, because Carlo’s head was never scanned.

Doc emails me that he forgot to order a scan of Carlo’s head when the original scans were done. We’re stunned that no other doctor along the way even noticed.

Day 169: The oncologist tells us that the brain tumor may be where Carlo’s rare cancer started. And that the drugs used in his chemotherapy were not a type that crosses the brain’s protective barrier. Essentially, Carlo suffered terribly from treatments that probably couldn’t have helped him.

Day 173: A termination notice arrives from the air base human resources department.


They have no choice, they say; it’s simply policy. Carlo has failed to return to work, and the signed form that would have excused him was never submitted.

I frantically call the oncologist’s office. Three days later they find the form, still unsigned, sitting on someone’s desk.

Day 206: The rare, weird, aggressive cancer takes Carlo’s life.

He was fifty-eight. He had honorably served his country for more than half his life. Failed by clinicians and staff in our healthcare system–some of the very people he’d dedicated his life to protecting.

Day 271: I meet with Carlo’s doctors. Their awkward apologies provide zero comfort. They swear they didn’t know that we couldn’t get appointments, or that we were repeatedly given inaccurate information. And no one ever told them that we’d called, so how could they have known to call us back? They soothe themselves by saying that nothing really would have changed the outcome.

I tell them that Carlo’s life was worth their effort. That, at a minimum, they might have eased his terror.

I suggest that it might help to implement patient-safety and quality-improvement initiatives on the front end, where patients and caregivers first interact. They nod, look thoughtful and promise.

Day 951: Carlo’s case has been presented at grand rounds and patient-safety conferences at the medical school. In response, studies of the handling of appointments and patient calls have been implemented.

Yet I still hear every single day of patients experiencing the same things Carlo did.

Timeline Two

Day 1: It’s been a few months since Carlo died. A simple white stone now stands watch for him at Camp Butler National Cemetery.

I have put off canceling his cell-phone service as long as possible. His children, friends and family from all over the world still call to hear him say “Leave me a message,” then weep and pour their hearts out into his voice mail.

But money is tight. The phone has to go. It really wasn’t much good, when none of his doctors would call him on it when he so desperately needed them.

Within minutes, the phone company representative verifies Carlo’s death, cancels his phone and tweaks options to reduce the bill.

Just like that, it’s all done. They act like helping me with that stupid cell phone is a matter of life or death.

About the author:

Debi Santini works in administration in the Office of Residency Affairs at Southern Illinois University School of Medicine. During Carlo’s illness, he and Debi kept family, friends and colleagues up to date through the CaringBridge website. The entries they wrote for CaringBridge are the basis for this story. “My hope is that telling Carlo’s story will bring about much-needed improvement in what patients unfortunately encounter regularly in the healthcare system.”

Story editor:

Diane Guernsey


47 thoughts on “Two Timelines”

  1. This is a very sad situation. You really realize that no one really care of Carlo!
    Hospital staff should care of each patient as they will care for a member of their family. Who knows, how many people out there are walking in Carlo’s path?
    May each of us do what he is supposed to do in other to give the best of his ability when we are at work.

  2. Dear Deb So sorry for your loss. Especially the way it had to come about through neglect. I want to thank you for the the hard work and dedication your husband but in to serve our country. What a hero. You both were. Thank you pamy

  3. Dear Debi,

    What a touching and sad story.

    The only way for all those who dragged their feet in your husband’s fatal disease to learn is to sue them. Contact a good medical malpractice attorney.

    Carlo, you, your family, and future patients who could get the same “treatment” – all deserve to talk to those involved in the only language they really understand. Otherwise there will be empty promises.

    Ron Banner, MD

  4. I’ve had a few disappointing health care scenarios with my son and my father recently. I can’t help but observe that if everyone were putting 110% into their thoughts and behaviors everyday, any person “on the inside,” i.e., a doctor, nurse, admin person, office manager, medical assistant, ANYONE, could have made a positive difference at any point in the story. Maybe eventually we would arrive at the same outcome, or maybe we might add just a few days or weeks to our loved ones’ lives, but feeling neglected and blown off at every turn just makes us more jaded and cynical. Anyone can make a difference. As health care workers, we all have to be vigilant and conscientious and put all our efforts into doing our best in every single moment of every single day.

  5. Rio, I wish it was that simple. In fact, having worked with the NHS for 4 years as a health care improvement specialist, this is less likely to have happened there. However, these types of terrible scenarios occur in EVERY health care system too often. Carlo’s story is particularly agregious- no words can express the sadness at his loss, the regret of his terrible suffering and indginity of his treatment. I work with health care systems all over the world, Debi, and his story will be told. Your gift will be our learning and, I pray, good comes from it.

  6. I’m not sure the unusual presentation of a rare, malignant tumor really teaches us about things (as 99+% of the time NSAIDS + PT is appropriate 1st line tx. for this kind of symptom), but this article actually demonstrates the long term sequalla of the influence of the Feds on medical practice and is pretty consistent with the way a lot of people would be treated in Universal Healthcare systems like the NHS in Great Britain. It’s the opposite side of the coin from the criticism that we overdiagnose, overimage, and over treat traditionally here in the United States.

  7. i have linked to this at Sermo, a website for doctors. it needs to be told to the smug republicans who dominate that web site. -texas MD

  8. Wow. I am glad you wrote this, sad you experienced it. Stories like this need to be told. Your courage is amazing- I doubt I could find the strength to write this! What you and Carlo went through no one should ever have to endure. It fills me with such inarticulate rage. I admire you greatly for finding a way to give voice to such frustration. I hope Carlo is at peace. And I hope that those who made his last months so difficult will one day face their own karma.

  9. This devastating sequence of events and unfeeling negligence is staggering to contemplate, and raises many more questions. While the family has somehow resisted a malpractice suit, hopefully they have lodged a complaint to trigger a multi-level investigation by the state medical board. While I may be wrong and this is not mentioned in the story, I cannot help but wonder if our out-of-control pain-medication epidemic in some way contributed to his physicians seeing him as simply another opiate-seeker to dodge. While we as physicians have become jaded and suspicious, we must always satisfy ourselves that every pain complaint is evaluated appropriately and in a reasonable time frame.

  10. Carol Roberts Gerson

    Despite all of the safeguards that should prevent experiences like this, the system clearly is not adequate. Our only recourse until something changes in our healthcare delivery system is to empower patients to demand that their appointments are not delayed and their questions answered.That requires some medical sophistication and we should be educating patients at every opportunity that they can be demanding and not take no for an answer, if people are not hearing and understanding their situation. There is always somewhere higher to go, hospital administration, patient representatives, office managers, who can expedite care. It is hard to question medical personnel but we need to encourage patients to do just that.

  11. Ms. Santini- Thank you for taking the time to share this painful (on so many levels) experience. I connected with this on a personal level in terms of people in my life who have had somewhat similar experiences with bureaucratic inefficiencies. But also as a health professional I feel ashamed and just plain perplexed how we have so many well-trained doctors and nurses and yet as often as not it doesn’t translate to good care. Of all people this should not have happened to Carlo–he dedicated his life to protecting us, but when it came time for us to protect him, we dropped the ball.

  12. There should be 1) checklists for all processes with clear guidance for normal follow up outlined and 2) empowered patient navigators familiar with different cancer treatments at each facility should be assigned to every new patient. Percentage of compliance with the checklists should be reported at the executive level. “What gets checked gets done.” Care givers dealing with very sick people need standardized tools and processes to help them ensure the best care for their patients. It shouldn’t be the families/friends of patients who have to work to prevent problems/oversights/poor treatment, etc for their loved ones.

  13. I feel physically ill reading this and I am so so sorry for all that your husband endured and for your loss of this great man. Thank you for telling the story and for honoring Carlo by making sure change happens. I will share it with our residents and students (and colleagues)

  14. [quote name=”Dan J Schmidt MD”]If I had a day for every time
    I have heard “we have the best
    healthcare system in the world”
    when I argue for change, I
    would give them all to Carlo.[/quote]

    Dear Deb, this is heartrending, and I am sending it to all the best docs I know. I am also using it to push myself to keep trying, even though the computer systems and protocols are killing me with their blind obtuseness, because I see your husband and his shoulder and neck pain, and the weeks of shaking hands, and the ANGER helps give me the energy to keep trying not to give up. With love and prayers for you and your family.

  15. Thank you for all of your kind, caring comments and thoughts. You have all helped us immensely. We have beaten ourselves up with what-if’s and maybe’s. What if someone had actually followed up on the first x-ray immediately instead of Doc reading the report on day 56? What if Carlo had been hospitalized when the tumor was found – would scans have been done promptly and the brain tumor found? What if appropriate treatment was started promptly? Were we somehow at fault? What if I had just known more, or spoken more eloquently or intelligently, maybe the staff and physicians would have acted. And just maybe Carlo’s cancer journey would have been very, very different.

  16. We were very aware that what Carlo endured constituted serious negligence and medical malpractice. Before Carlo died I promised him that I would make sure all of his doctors knew how they failed him and I vowed to work to get the system fixed. I chose not to take legal action or seek restitution, going against the wishes of our son and daughter. I preferred that all efforts go towards fixing the very broken system that failed Carlo instead of having resources focused on defending a lawsuit. I question that decision every day – would legal action have forced the improvements that still have not been made? Another maybe.

    To answer Barry Saver’s question – Doc’s practice received PCMH/FQHC certification a few years after Carlo died.

    And Dr. Schmidt – we would gratefully take your generous offer of more days for Carlo. If only it could be.

    Thank you all again – God bless you and please go forth and make things better in our world.

  17. Words hardly seem adequate when it comes to reacting to what you presented so well in latest offering.
    I heard only this week a speaker, an official from Mass General Hospital, explain in way of a history of that institution, how Mass General ( and most hospitals) in the beginning was largely a place for the poor to go to die. The rich made other much more suitable arrangments. Can’t be that bad today but when one views onTV the endless advertisements for drugs and hospitals and related products, you begin to wonder what it is all going to add up to ultimately. Buyer beware I suppose it is, as it is with most things in life.

  18. This is so sad. Part of the problem is the physician office/clinic management.The front office workers in clinics and physician practices are often young women with little formal training. Many of them feel their job is to not upset the doctor. There is often conflict between front office staff and back office staff. Cost savings have resulted staffing with medical assistants whose training may be on the job or without consistent standards. Nurses seldom work in physician’s office. Often times the physicians have no process to capture and report the waiting time for a patient to get an appointment. Many offices and clinics are simply not professionally managed, and if they are, the manager is stretched thin responding to urgent problems. It is frustrating and overwhelming.

  19. Margie, I had to respond to your comment. I would give anything to have the health care sysytem you, other European countries and Canada have. I was among those who totally supported Obama in an attempt to develop universal health care. I agree wit you that the odds of the type of series of events eould be far less likely to occur if that was in place.

  20. Margie Gottlieb MBBS

    As an Australian family physician let me say that even though our government funded universal health care scheme, Medicare, is often far from perfect, the extraordinarily poor treatment Carlo received would be quite unlikely to occur here in Oz. Sadly our current very conservative government is trying to Americanise (privatize) our relatively good medical system. Debi’s story send shivers down my spine. It seems to us that you guys could, but don’t, support President Obama who’s been trying his heart out to introduce some kind of system like ours and is being thwarted at every turn. Here in Oz we just don’t understand why the people of America put up with such awful, often financially ruinous, fund directed health care when there are better alternatives in countries not dissimilar to your own. Am I naïve or have I missed something??

    1. I agree, this story is very tragic. However, the story was not an issue of access or payment for medical services. Carlo had access to doctors, and had good health insurance. The family was not buried by medical bills or denied care for financial reasons. However, the doctors involved certainly failed at every turn. This is an example of gross negligence, not access to healthcare. Don’t bring politics into this. Obamacare is not what it was purported to be, and with recent revelations about the crafting of the law, it looks worse every day. You have certainly missed something.

      1. [quote name=”Steve”]I agree, this story is very tragic. However, the story was not an issue of access or payment for medical services. Carlo had access to doctors, and had good health insurance. The family was not buried by medical bills or denied care for financial reasons. However, the doctors involved certainly failed at every turn. This is an example of gross negligence, not access to healthcare. Don’t bring politics into this. Obamacare is not what it was purported to be, and with recent revelations about the crafting of the law, it looks worse every day. You have certainly missed something.[/quote]

        Agreed – I am somewhat dismayed that so many are trying to see this as a healthcare access issue rather than negligence. This has nothing to do with Obamacare. It is thinking like this that bogs down improvements that are really needed.

  21. If I had a day for every time
    I have heard “we have the best
    healthcare system in the world”
    when I argue for change, I
    would give them all to Carlo.

  22. Haunting story. Its good that the case was presented and efforts to improve are under way, but nevertheless the author reports hearing of these stories continuously. We need to do better.
    -Internal Medicine, PGY3

  23. I am deeply saddened by this story on so many levels.As a social worker, I would like to think that that a social worker coupled with a patient advocate could have helped. I agree with Veneta, this story must be told to a broader audience.
    Debi my thoughts and prayers are with you….

    1. I wept.I am frustrated. I see this way too often. I have been a nurse and manager for 42 years. Our healthcare system has become a disjointed, disorganized mess with no physician willing to take responsibility for a person’s medical care.I see frequent referrals with no one taking charge. Few doctors will discontinue a medication that is doing no good but that they did not originally prescribe.

  24. This is heartbreaking. What a powerful story. “I tell them that Carlo’s life was worth their effort. That, at a minimum, they might have eased his terror.” Is patient experience just periphery? Or is it the entire continuum of care, safety, outcomes, well-being, processes, caring, service, etc.? Not-for-profit health care systems are empowered to provide care for vulnerable people, and are provided incentives and exemptions to do this. When things like this happen, shame on them for not holding up their end of that arrangement. Thanks so much for sharing!

  25. This journal breaks my heart. It makes me ashamed for our professions, all the healthcare workers, as we have now become, let this family down. Veneta is right, yes to publishing this further, Washington Post, New York Times, Huffington,I hope you are ready.

  26. I expect to see this powerful story reprinted in the Washington Post where it will reach even more readers. Other stories published here have been honored in this way.

  27. Debi, My heart breaks for you! I have seen this first hand both as a Family Nurse Practitioner, and as the wife of a dying husband (leukemia) trying to negotiate a complex, confusing, and disorganized health care system. I wish that I could say what you experienced was the exception, but sadly, I know that it is all too common. Our health care system is overloaded and fragmented. Those of us in the system are increasingly bogged down with regulations, forms, prior authorizations, and clicking away on our electronic medical records, when what we are trained to do is SEE PATIENTS and actually TALK to patients. We in primary care are supposed to be advocates for our patients and help them negotiate a difficult and sometimes dangerous system. Your story inspires me to do better.

  28. I’m a physician. This broke my heart. Dare I suggest that each patient be assigned an advocate – someone on the inside of the system who would aggressively and actively navigate the patient through the system? But wait – isn’t that what a primary care provider is SUPPOSED to do?

  29. This is a heartrending story. It never should have hsppened. I agree with the comment to send what happened to some higher authority .

  30. Dear Debi thanks for your extremely truthful account of what goes on in the health system these days.your pain and anguish has been felt not just for the time your family experienced all these failures first hand but also for the time when you wrote this account for the benefit of others.it takes a lot of courage to do that! Having medical background and knowledge of our illness also makes us in my opinion more vulnerable to this kind of assult.even worse,when confusion is brought in by the system failure it is the people like us who additionally suffer with self-doubt,even when we suspect danger beyond just an intution.challanging our medical colleagues and the very system we ourselves are a part of,becomes almost impossible.our loved ones look at us with questionning eyes and all we can do is try and explain to them how difficult it is often to catch the disease early enough for them to have respite from it.
    Death is inevitable but what hurts most is when it becomes-the Respite.

  31. This story broke my heart, too (even if I am a guy…). It made me reflect on the times I have had to throw my weight around as a physician to get the right thing done for family members and how unfair it is that most patients don’t have someone able and willing to do that. I wondered if Carlo’s primary care physician’s office was a certified “PCMH.” Our measures of “quality” and “patient centeredness” will not fix the failures depicted here. Where is the push to truly put the patient at the center of care?

  32. This had me in tears. So incredibly tragic. And so incredibly common. I’ve heard similar stories more times than I can count. And have experienced my own decline in health to the point of disability due to the same kind of experiences in the mainstream medical system. When will somebody pay enough attention, instead of dismissing these experiences, to make some changes. How many people have to suffer and die. I agree with another commenter that this story be sent to the President, as well as state representatives and human rights organizations. I, for one, would give permission to include my signature on that letter in support.

  33. I can’t help but notice that the great preponderance of commenters on this tragic story are women.

    Men, do you care as much as the women? Write then!

    Just in case, I would definitely send a copy of this beautifully-written, extremely tragic story to President Obama in the White House. He does read 10 letters a day, and one of mine got read. I received a reply, too.

  34. This absolutely broke my heart. How terribly unfair, how sad, and no matter the restitution that Debi seeks – it still does not ameliorate the pain nor make it right. I hope that telling this story to so many will bring her comfort, and ultimately help to bring about change in this terrible system.

  35. Elizabeth Ackerson

    Dear Debi, My heart goes out to you, to your children, to your brave husband. Our medical system failed him. He has much to teach us still, from his suffering and his death, about compassion, about listening to our patients, dropping the “idiotic gate keeper” and stepping forward as real, caring physicians, nurses and caregivers. I believe in you. I believe in your husband. I believe medicine has to change.

  36. Thank you so much for telling your story. I am so deeply sad for the suffering Carlos endured, and for your suffering. I commend you for talking to his doctors and telling them the truth of what their system caused. It all needs fixing and your story will, surely, help that along. I am sorry for your loss.

  37. I am so sorry you had to experience this. How different the experience might have been had even one person gone the extra mile, expressed concern, compassion and the effort to make the situation better. Regardless of what the eventual outcome was to be, the road there certainly could have been made a gentler one. Thank you for writing about this painful experience.

  38. What a tragedy and my heart goes out to Ms. Santini. I hope she has a good lawyer and suggest that she send her account to the new director of the VA. He seems like he cares and more importantly he gets things done.

    1. Editor’s note: In the third paragraph of the story, it is noted that Carlo did not receive his medical care from the VA.

  39. I am so sorry for your negative experience and for your grief There is no excuse for the disorganization and inefficiency of our health care system. I can identify w your reluctance to discontinue the phone. We are still paying for our son’s phone 2.5 yrs after his death. I pray for comfort and blessings for you.

    1. I am deeply sorry for your loss and heartbroken at what you had to endure. Such gross negligence. I will keep you in my prayers. And to the person who asked we keep politics out of this, politics are personal for many of us.
      Ms. Santini you and your family are exceptionally brave.

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