There are several recent trends I’m noticing in the healthcare industry, and I’m not liking what I see. In 2019, I had a migraine for the first time in my life, and as an older woman, this seemed like a good thing to mention to my doctor. She didn’t like the sound of that, so she ordered an MRI. When I left the screening, the techs were chipper and vague but said that I should definitely talk to my Primary Care doctor about the results…soon. Like, don’t wait for a call. Call her Monday. First thing. It was a Friday afternoon, and they were kind of freaking me out, but they also said they were not authorized to give me the results, only she was.
My results posted to the portal the following Monday afternoon, and I had an abnormality called a cavernoma. The recommended treatment is brain surgery. I called my then doctor’s office a few times. Finally, on Thursday the receptionist called to read me the same report I already read on the portal days earlier, except she couldn’t pronounce it and didn’t know what it was. I had already googled all that and knew what I needed to do. I got a referral for a neurosurgeon, and after a nightmare of being denied coverage by my so-called insurance, then changing insurance companies [1], I had the brain surgery and went through a fairly speedy recovery process.
Two older relatives of mine died from cancer recently. In both cases, they didn’t know they had cancer until much too late. As we dug through medical reports, we discovered that “irregularities” had been noted in the written records of visits to doctors or hospitals that included scans, but the medical staff had not alerted them to the potential for cancer, and these “irregularities” were buried deep in the techno-babble of their medical report on a portal they may never have even read. There was never any follow up with them by their doctors to find out if they had cancer, and no treatment options were given to them. For their final years, they handled their increasing pain with Tylenol because they didn’t know what was wrong. These are individuals who lived thousands of miles apart in completely different parts of the country.
What is causing this tendency (if these examples are indeed a trend) to avoid giving patients the “bad news” that their medical tests reveal? I have several possible theories.
Liability concerns. Increasingly, medical personnel seem to be dancing around giving bad news, using caveats like “consistent with” or “likely” rather than coming right out with the diagnosis.[2] Is it because only certain doctors are authorized to say certain things? Is it simply being afraid of confrontation?
Insurance policies. Is this lack of “pushiness” about diagnoses because insurance coverage is likely to be lacking, or the hospital or clinic doesn’t make enough from the procedure? Is it because people don’t pay their portion that isn’t covered by insurance? (I also have three stories from the last two years in which 3 separate clinics overcharged me, then suggested that I keep that overpaid amount “on account” for them to continue to use against my future visits. Prompting me to ask, “What am I, a bank?”) After all, treating cancer is very expensive–dying from cancer is practically free.
Staffing problems. I had to think the receptionist reading me my MRI results was a staffing problem as she was in no way qualified to give me medical information or advice. Being shuffled around in an ER is also pretty common, and there are staffing shortages in many areas. If you don’t have enough time to tell someone “you are terminal” and appropriately deal with family questions and grief, maybe that explains the game of hot potato some are playing when they take a wide-eyed look at the medical chart and then jet off to some (fictional?) emergency elsewhere.
Ageism. At what point do doctors just figure “old people are going to die anyway” and quit trying to treat them as if quality of life and longevity are even goals?
After these incidents, my first recommendation to everyone reading is that you 1) always, always read every medical report that is posted to your portal, and 2) for those over age 50, you have another person review them also, and 3) at a certain age (not sure what that is for you) you designate a trusted person to have your medical power of attorney so that informed decisions can be made on your behalf if needed. This third one is because you don’t know if you have dementia issues that are preventing you from remembering things that were said, your medical risks, your medications, or suggested follow up procedures.
- Have you or a loved one encountered these issues? Are they common? Are they a trend?
- Is healthcare getting better or worse? Why do you think so?
- What have you done to handle care for an older relative, or if you are older, what precautions have you taken or do you recommend taking?
Discuss.
[1] Thank you Obama for the ACA that ended insurance companies denying coverage for pre-existing conditions!
[2] Additionally, every medical report you get from every provider is going to say they talked to you about weight and diet, when at least in my case they absolutely did not. Is this because patients are offended? Is it because doctors are “required” to cover it even when it’s not a problem due to some “obesity epidemic” regulation? It seems pretty silly to me that the only reason my BMI was over 25 is because I was wearing sneakers, and then of course the doctor said nothing. It seems like the numbers themselves are generating a pre-written script into the report, and they can bite me.
Wheat & Tares 
I live in Canada so my experience is probably different from those in the USofA.
My wife was having abdominal pain we visited our GP in Scotland. He diagnosed gall bladder problems and told us to immediately drive to the nearest surgical hospital. When we arrived the consulting physician had xrays taken but he felt uneasy with the diagnosis. He recommended she wait in the hospital until he could do more xrays for a more definitive diagnosis.
While my wife waited for 3 days, she felt very uneasy with the cleanliness of the hospital and wanted to go home to Edmonton which was our home base. Within 3 days we were back in Canada and consulted with our Canadian GP. He felt that the diagnosis of gall bladder problems was correct and set up a consult with a surgeon. The next day my wife had a severe attack and we went to the ER. Then confirmed that there was a blockage in her bile duct and for surgery the next day. The surgery was completed and she was feeling much better.
A few days later we received a call from the surgeon to discuss the results of the surgery. With a serious look on his face he told her that she had adenocarcinoma of the bile ducts and that she had perhaps 12 months to live. In subsequent consultations with other oncologists the prognosis was confirmed…about 12 months to live. There were no sure-fire treatments available for her.
We received excellent palliative care and she did pass away 11 months after the final diagnosis. We had excellent care from our doctors and specialists, all of them keeping us informed about her condition, none of them pulling any punches. Our cost over the year came to about $100 for pain drugs. No medical fees or hospital fees. We also had no private medical insurance coverage, all of our coverage was through our provincial health service.
How do I feel about Trump’s offer to make Canada the 51st state? I can only say “No thanks, I like it here!”
There is an interesting trend going on in the healthcare field to a “patient-centered” model that centers decision-making with the patient (and the patient’s agents/advocates). What is changing is that “the doctor” isn’t the end-all-be-all expert and the patient gets the best care when the patient (and/or agents/advocates) double checks reports, researches and asks informed questions, and acts as if the patient’s life depends on what the patient is doing.
My father-in-law is not used to this reality of being the “balance” for the healthcare he is receiving. I’ve gone toe-to-toe with some medical experts for our family over some almost garden-variety stuff going on associated with autoimmune disease, and my father-in-law’s eyes get larger and larger as I tell him what I did and what the doctors did with the information I provided.
This actually ties into the church culture too actually. For a long time, the church centered itself as the authority on spirituality (as part of it’s truth claims). But there is a fair amount of cognitive dissonance about when a person shifts the paradigm to “individual-centered” spirituality and claims God-given moral autonomy centered in what their spirituality needs and not what the church says their role-based spirituality needs.
Healthcare has a problem with primary care providers. There are not enough of them and they are paid poorly. Because PCPs offices are not paid well, they do not pay their staff well. The receptionist is not going to be a seasoned person with any medical knowledge. The person escorting you into an exam room who asks you basic medical history questions and takes your blood pressure is a medical assistant. They may or may not have taken any sort of class or training. When your PCP tells you that their office nurse will call you back, that person is rarely an actual nurse. That person is usually an unlicensed assistant of some sort. There are exceptions, but this office structure is the norm. Large offices with large numbers of PCPs can do a little better.
The PCP is going to send patients out for scans, special exams and lab work. All of those things are going to be run through the expertise of some specialist before being sent back to the PCP with an expert opinion attached. A radiologist is going to look at the scans, a pathologist is going to look at biopsies, unusual lab findings will find their way to a variety of different specialists. Referrals to appropriate specialists are then made.
Some PCPs will list results and expert interpretation before they contact the patient directly. Others will hold those results until after direct contact is made with the patient.
This process of getting expert opinions of results and referrals for treatment is not always fast.
In healthcare, the PCP is the unsung hero who gets little respect within the system, they are the least paid and the most overworked. They are also the gatekeepers to everything else.
Healthcare has a problem with specialists. There are not enough of them and everyone wants to bypass their primary care provider and move straight to the specialist. Specialists are paid well. Insurance companies do not want to pay for specialists unless they are truly needed.
Healthcare has a problem with reimbursements. Medicaid pays horrifically awful. Medicare pays poorly. Private insurance reimbursements can be great or not. Some insurance companies attempt to deny just about everything.
The ACA was developed for very specific reasons. Any insurance plan purchased by an individual or small business that is outside of the ACA has such massive exclusions that they are pretty much trash. Those plans remain popular because they are less expensive.
Hard conversations in healthcare? Most providers have no problem having those conversations. Do all diagnoses have the same outcome? No. Scans and labs that look unusual need further follow up. Do all possibilities get discussed? Yes. Do all patients want to follow up on such things? No.
The US system requires a great deal of patient involvement and advocacy. There is no one set up within the system to have that role when someone is not within a hospital. Even in the hospital, there is inconsistency and a variety of quality in how that is handled. The PCP is supposed to be that person. They are often overwhelmed.
Healthcare remains a resource with finite supplies, limited hospital beds and a set pool of people with higher level skills and training. Who gets access to those finite resources and how are those resources funded remains the most difficult question in our society. Behind every medical statistic are real people with real medical conditions and lives that were changed for better or worse by the healthcare system.
My adult kiddo is a frequent flyer of surgical care since he was a day old, so I can tell you it isn’t cowardice, but probably incompetence that caused those diagnosis to be missed.
Radiologists (the person who takes the ultrasound, x ray, CT, or MRI) are not allowed to diagnose by law. They may have suspicions from glancing at the scan but they do not have the training or authority to diagnose or to talk with patients about the results. They are specifically forbidden from doing so and could lose their job if they did. If they said anything it would be like the janitor at the hospital discussing your possible prognosis with you. That would be extremely irresponsible, even if they had picked up a few things while working there from working around so many patients.
The scan is sent to a radiological doctor trained in reading scans, who writes up an in depth report about that scan. As you explained, sometimes, if you are lucky it may be posted to your online medical chart. At this point, the doctor who ordered the scan hasn’t had a chance to look at it yet. Some doctor’s offices choose not to post these scans to the online chart because they prefer the patient doesn’t read it, because the words and the details of the report are difficult to understand if you aren’t a doctor and are often misunderstood by patients. This can cause a lot of headaches for the staff of the doctor’s office if patients call frantic about test and scan results before the doctor has had time to look at it themselves.
Eventually your doctor who ordered the scan will read the report, and hopefully review the scan using their own expertise. Keep in mind this isn’t always a clear, obvious, black and white cancer/not cancer diagnosis. It’s a judgement call based on education, experience and expertise. Sometimes doctors make the wrong call. Sometimes they require more scans or tests to make a possible diagnosis.
At this point your doctor is supposed to report what he thinks the results are, to you. Sometimes this is done by phone but often they may have their office make an appointment for you to come in to receive the results. If you miss the phone call or the appointment you won’t get to hear what he thinks the diagnosis is.
Don’t drop the ball. There could be negative consequences if you choose not to follow up and make sure you get those results. Sometimes the patient shows their own cowardice and incompetence when they avoid calls, or appointments, or don’t listen or think clearly at the appointment.
This is a lengthy process. Patients can fall into the cracks. It’s important to follow up with your doctor and make sure you get those results. If your doctor seems unsure it’s possible you may wish to get a second opinion. I know from experience that they practice medicine just like a person practices the piano: there are always mistakes.
I haven’t seen any evidence of cowardice from my son’s several specialists dealing with his frequent difficulties and surgeries. However, each doctor, and each technician who does the scans, has limited expertise. I have seen plenty of evidence of that. Often, they are just guessing.
Speaking of adverse healthcare trends, consider the downright cruel antics of RFK and Trump. My beloved sister is a cancer patient currently receiving treatment at the Huntsman Cancer Institute. Since almost dying in 2021, she has been kept alive and well by participating in a clinical trial funded 50% by the NIH. Her treatment protocols have been remarkably successful, and the Huntsman medical staff has demonstrated great expertise in managing her outcome.
At a recent visit to Huntsman, the doctors informed her that the NIH has been randomly cutting funding for cancer trials, and her trial is now at risk. This even though lives are being saved, new treatments are becoming standardized, and future generations spared the uncertainty of ineffective treatments.
So, RFK/Trump are cutting funding for lifesaving trials based on their political whims. My sister cannot afford to pay the $30K/month out of pocket it would cost to continue her trial medication. The physicians at Huntsman are fearful the funding cuts will curtail trials that show real progress in treating all types of cancer – including childhood leukemia. Real people will suffer and die prematurely as a result.
Healthcare in the U.S. has become abysmal at each level. Insurance companies are incentivized to deny coverage, the NIH is severely cutting research funding, and physicians are unable to provide true comprehensive care. All this while Nero/Trump fiddles. It is unfathomable that he picked a wellness influencer to be surgeon general.
I discussed this situation with my MAGA neighbor who is also the current SP. He had the gall to claim that Trump/RFK were reducing fraud/waste by curtailing research funding from enriching the pocketbooks of physicians. I let him have it and challenged him to learn the facts by visiting Huntsman and talking to real cancer patients being kept alive by new research and clinical trials. He later sent me a lukewarm apology via text, but the damage is done.
I just cannot comprehend the level of human cruelty exhibited by RFK and Trump.
My mother in law died of AIDS in 2006 at the way too young age of 54. She saw all sorts of doctors every week. I joined the family in 2003 so only spent a few years with her. When we would sort her mail, she would tell us to never pay a medical bill until it said something like third notice. She said that her doctors had a long history of billing her immediately then “updating” the billing later after insurance chipped in (she was a CA state employee and had pretty good medical coverage). To Angela’s comment about being a bank, she wasn’t interested in financing anyone. She learned the right buttons to push when making calls and the right buzz words to get her way and now that I’m in my mid-40’s, I wish I had paid closer attention.
Can you imagine going to buy a house or a car or a big vacation with a travel agent and having them tell you not to worry just take the product and they will sort the invoice later? Yet that’s what we do at hospital. It’s maddening.
Working for a large employer with a young work force, my coverage and network is actually pretty great. I sometimes feel tied to my job as a result because healthcare coverage matters. Our neighbor worked for Kaiser his whole career and now he’s tied to them in his retirement, which sucks because he wants to retire in Utah where all his kids live but would lose the coverage he spent a lifetime building.
Regarding life, liberty, and the pursuit of happiness, I believe that healthcare, prisons, and education should not be for-profit, in order to achieve these goals. YMMV.
I join Ms. Hawk in issuing my strongest possible condemnation to medical cowardice of every kind. It possess a serious threat to our well-being.
I went to the hospital several years ago with severe abdominal pain. The doctor said they would check to see whether my appendix had burst. The doctor told me that if it was the appendix, I would die unless I had it removed.
After some tests, the doctor told me that my appendix had burst. He said that he “recommended” that I have it removed. I said, “I thought you said I had two choices, get the appendix removed or die.” The doctor said, “I don’t like to put it that way—it’s your choice.” I said I would choose the option that allowed my life to continue.
This was poor cowardice on the part of the doctor. Has I been inebriated by Irish nachos and German beer I would have been unable to make a sound choice. The doctor was unwilling to make it, and I would be dead.
testing
For me health care has vastly improved in going from Obamacare to Medicare. Obamacare is an insurance policy, not health care. For $6000 a year all I ever received were wellness exams and a generic statin. I was healthy enough to never even satisfy the Bronze plan deductables. Medicare on the other hand has given me better health care than I’ve had in my life (including company insurance plans), and at lower cost OOP. Knee replacement, annual hearing aids and glasses, several free generic drugs, monthly cash payments for wellness and OTC medical supplies. Viva Medicare Advantage!
What I have not seen addressed here is two quite different systems of healthcare that exist in the US: for profit, and not for profit.
I work hands-on in healthcare, and have a child with a serious lifetime chronic illness. I’ve experienced a range of quality of care.
First, I’ve noticed a few misconceptions in the comments, so maybe let’s start with understanding the Affordable Care Act. The Affordable Care Act (ACA) passed in 2010, then took effect January 1, 2014. It has at least 2 parts:
-It establishes a common denominator of essential standards that virtually all healthcare plans must follow.
-It has marketplace for health insurance that people who don’t have insurance through their employer can sign up for. All employers with >50 employees have to offer a health insurance plan with minimum standards.
About the Affordable Care Act from Google’s AI (bracketed with ••••, bc my formatting skills are nil):
••••
Minimum Essential Coverage (MEC) requires that health insurance plans cover a broad range of essential services without annual or lifetime limits. It includes coverage for 10 essential health benefits (EHBs) and must meet certain minimum value standards.
Here’s a more detailed breakdown:
1. Essential Health Benefits (EHBs):
* EHBs are a set of 10 categories of services that health insurance plans must cover.
* These benefits include:
* Ambulatory patient services (outpatient care)
* Emergency services
* Hospitalization
* Maternity and newborn care
* Mental health and substance use disorder services
* Prescription drugs
* Rehabilitative and habilitative services
* Laboratory services
* Preventive and wellness services
* Pediatric services
2. Minimum Value Standards:
* A plan meets the minimum value standard if it’s designed to pay for at least 60% of the total cost of medical services for a standard population.
* It also needs to provide “substantial coverage” for inpatient and physician services.
3. Other MEC Requirements:
* Plans must cover EHBs without annual or lifetime limits.
* Plans must offer coverage to dependent children up to age 26.
* Plans must meet the ACA’s preventive services standards.
4. Examples of MEC:
* Employer-sponsored health plans, including COBRA coverage.
* Health plans purchased through the Health Insurance Marketplace.
* Medicare Part A and Medicare Advantage plans.
* Most Medicaid coverage.
* CHIP (Children’s Health Insurance Program) coverage.
* TRICARE and certain VA-administered plans.
5. Importance of MEC:
* MEC ensures everyone in the individual and small group health insurance markets has access to comprehensive coverage.
* It helps to prevent individuals from being denied essential care due to pre-existing conditions or other factors.
* It helps to meet the requirements of the Affordable Care Act’s individual mandate.
••••
We’ve come to take these essential standards for granted. Many people in my age cohort seem to have forgotten what healthcare was like before the ACA was implemented, or didn’t have experiences that cemented them into memory. When I tell anyone who didn’t need to pay attention to health insurance before 2014, they are shocked at the primitivity of pre ACA conditions.
For me, the real life ACA standards translate to:
-paying for my own contraception until 2014.
-my small child could get health insurance, despite a preexisting condition.
-Having to pay COBRA, the full insurance premium for my old insurance plan for 9 months, when my husband changed jobs, so my child’s preexisting medical needs would be covered by the new one. (9months exclusion for preexisting conditions-oddly specific, no?)
-not needing to worry when my child’s healthcare costs would reach $1 million and insurance would no longer cover them.
-My young adult children had health insurance, whether or not they were in college.
People who were self employed were often denied insurance coverage for such things as a single elevated A1C. Or, the insurance premium was jacked up.
The fight for the Affordable Care Act was very nearly a Sisyphean task. The Clintons tried. Obama got it passed, but implementation may have been unlikely if he had lost his reelection.
The ACA dulls when compared to health insurance in most developed nations. It has flaws. But we have it.
Hope we can keep it.
Hawkgrrrl-I have no intention to derail your points. Kudos to you for great self advocacy. And sorry it was needed. And for relatives who paid the ultimate price, not knowing how to deal with a complex system.
I have not even addressed my leading point-that there is a difference between not-for-profit hospitals, and for-profit hospitals. My understanding of the difference is emerging, but how about if I go there in another comment?
Healthcare will get worse in the future for this one reason: the population in the US, Europe, and East Asia is aging rapidly. That means more demand for healthcare and less supply. That said, we should keep things in perspective. The advancements that have been made in healthcare in the past 100 years have been absolutely remarkable. Average human life expectancy has gone up significantly in both the developed and less developed worlds. Consider that in Chad, among the least developed countries in the world, life expectancy rose from 38 in 1960 to 53 today. But improving the quality and length of life will be a challenge. You have to do a lot of preventative stuff yourself. Eat healthy. Don’t eat crap. And exercise every day. Don’t be an unnecessary burden on the healthcare system.
I am supportive of more public spending on healthcare. I wish Obama would have passed a public option. However, the death of Ted Kennedy and the horrible Democratic candidate, Martha Coakley, to replace him in Massachusetts (Massachusetts!!) led to a Republican victory in that state thus preventing the Democrats from securing a supermajority in the Senate. Thus a public option was thwarted and Obamacare passed with less teeth in it. Still, I think that public healthcare systems in the developed world are going to face incredible strain. A mix of public and private healthcare is the best way forward (sorry Bernie and AOC). The developed world is at a point where it needs to import youth from the less developed world, which has a vast abundance of young people. They have to let migrants come in and naturalize them. It is a win-win. The migrants get to pursue opportunities in more developed countries. The developed countries get a younger population to support their aging populations and economies. The migrants maintain connections with their home countries and help build them up and build a better relationship with the developed countries. If only the developed world would get over its xenophobia and expand the definition of what it means to be Chinese, Polish, Italian, American, Canadian, or what not. In this regard, the US is way better off, even under the hostile xenophobia of Trump (he’ll never manage to deport ~14 million people in 4 years, in fact he has barely made a dent in the undocumented population of the US so far), than Japan and South Korea. I honestly have no idea what they’re going to do there. They have to have more migrants from other countries which they naturalize as Japanese and Korean.
“Thank you Obama for the ACA that ended insurance companies denying coverage for pre-existing conditions!”
Absolutely, but insurance companies have found a work-around to this law by taking advantage of the bifurcated health system you described. Everything beyond a basic check up by a PCP has to be referred out and “pre-authorized,” requiring the patient to either pay out of pocket (if they can) or seriously worse or die while waiting for business executives to decide if a procedure or test your doctor has ordered is medically necessary.
Was the ACA better than nothing? Sure. But it was also a huge gift to the health insurance agency. The best thing the ACA did was expand Medicaid. Should have expended it to everyone. Universal healthcare should be a right, not a privilege. If you have a right to own an ak-47, you should have right to get a CT scan in a timely manner without going bankrupt…. And yes, I voted (or caucused) for Bernie twice. He happens to be right. Why is it that a secular Jew seems to understand the message of Jesus way better than nearly every self-described christian in America?
As a pathologist, I write diagnostic reports form tissue biopsies and resections. The intended audience is primarily the doctor who ordered the test, rather than the patient. But with the implementation of the CURES Act, these reports now go immediately to the patient’s portal and are available to the patient before their doc has a chance to see it. These reports use a lot of jargon and require expertise to understand and put in context. So there are now issues occurring with patients reading these without the benefit of professional interpretation. It creates problems and misunderstanding. I think this aspect of the Act is a bad idea, and wish there were a way to put a hold on the posting of the report until the ordering clinician has read it.
This week I had to let a worker go for various reasons. This person is in his late 50s and he and his parter have significant medical issues. I felt like I was giving this man a death sentence because health insurance will end, government safety nets are usually ineffective, etc etc. I mean I literally felt that I was shortening his life expectancy.
In the last year due to my daughter’s medical challenges I’ve appealed three different insurance company decisions successfully. It took weeks and weeks for the whole process and I’m an adult male with means and ability to fight decisions. None of my daughter’s appeals were successful and I think it’s partially because I’m male that my appeals worked. I think 90% of patients will just accept the insurance decision and suffer or die in silence. I’m seriously worried about my own old age and – I hate to say it – I have a plan B.
Toad’s experience is just one example of many of why one’s health coverage should never be connected to one’s employment.