DYING, ILLNESS, AND AGING WITH GRACE

by Pat McNees (updated 1-14-19; original post 10-10-15 was 'Taking the mystery out of health care prices')
Can we lift the veil on health care prices? Are we moving toward pricing transparency (getting doctors, patients, service providers, and insurance companies on the same page)? When our doctors send us for tests and procedures, must we be like the dinner guest in a fancy restaurant who is handed the menu without prices? How many of us know up front what a colonoscopy costs -- or how much charges for any procedure vary from one clinic or doctor to another? What does an MRI cost? Are prices uniform or predictable?

Until recently, it has been difficult to know in advance what a particular health problem or procedure will end up costing us, as patients. Or how much health care costs vary between practices, cities, and states. Some things are changing, but you have to do your homework to be a smart health care consumer. The following articles shed light on a changing system and improvements in which information consumers have access to.
• As Hospitals Post Sticker Prices Online, Most Patients Will Remain Befuddled (Julie Appleby and Barbara Feder Ostrov, KHN, 1-4-19) "As of Jan. 1, in the name of transparency, the Trump administration required that all hospitals post their list prices online. But what is popping up on medical center websites is a dog’s breakfast of medical codes, abbreviations and dollar signs — in little discernible order — that may initially serve to confuse more than illuminate....That’s because the price lists displayed this week, called chargemasters, are massive compendiums of the prices set by each hospital for every service or drug a patient might encounter. To figure out what, for example, a trip to the emergency room might cost, a patient would have to locate and piece together the price for each component of their visit — the particular blood tests, the particular medicines dispensed, the facility fee and the physician’s charge, and more....And there’s this: Other than the uninsured and people who are out-of-network, few actually pay full charges....Even when consumers do locate the lists, they might be stymied by seemingly incomprehensible abbreviations....Nevertheless, some experts say that merely making the charges public shines a light on the often very high — and widely varying — prices set by facilities....Billing expert George Nation, a finance professor at Lehigh University, said that rather than posting chargemaster lists, hospitals should be required to provide the average prices they accept from insurers. Hospitals generally would oppose that, saying negotiated rates are a trade secret."
• In Health Care, A Good Price (Or Any Price) Is Hard To Find (Jenny Gold, Reporter's Notebook, KHN, 9-14-17)A recent story about why Northern California is the most expensive place in the country to have a baby began as a tip from an obstetrician. Dr. Sarah Azad told me that insurers were paying her just a third of what they pay doctors employed by large hospital systems in her town of Mountain View, Calif. "As it turns out, the vast majority of contracts between doctors or hospitals and insurance companies are subject to a gag clause, which prohibits either party from disclosing negotiated rates. That means it’s almost impossible for consumers, researchers or journalists to find actual, accurate numbers, despite the fact that cost differentials among doctors can be so stark.... I have long understood that the lack of price transparency is one reason our system stays so expensive. It was a surprise, though, to find out that this opacity is cemented by legally binding contracts....It’s no accident that data on physician costs are so hard to find. Its inaccessibility allows hospitals to keep raising their prices. It’s simply not in their interest for the public to know how much they’re charging. And insurers don’t want other doctors or hospitals to see the high prices they’ve agreed to pay, for fear they would demand the same....In the end, all of us — through our insurance premiums and our taxes — pay a price for non-transparency."
• The Risky Game One Doctor Plays To Help Patients Find Affordable Insulin (Martha Bebinger, Commonhealth, WBUR, 4-19-18) "There are several websites that list the cash prices for insulin and hundreds of other drugs. But most of [Dr. Hayward] Zwerling's patients have health insurance, and each health plan varies. When Zwerling meets with patients, he can't tell what the copay will be for each drug. He doesn't know if the patient has met their deductible. Those on Medicare may be in the so-called doughnut hole. The brands of insulin Zwerling prescribes are covered by some plans, with varying costs for members, and not others. And the negotiated price for each drug may be different from insurer to insurer and pharmacy to pharmacy....There are some remedies in the works. CVS Health has just rolled out a program that lets pharmacists show patients the cost of a prescription before they fill it, as well as cheaper options....Massachusetts is, in theory, ahead of many states because doctors, hospitals and insurers are required to help patients find the price of services. But that requirement does not apply to pharmacies or prescriptions, and there's no move to amend the law. That's disappointing to some consumer advocates."

• Truecostofhealthcare.org (David Belk MD's site is a "treasure trove of information and analysis for journalists and highly regarded by academics as well" (Randy Barrett, AHCJ, Spring 2019) Hover over the heading "healthcare" and dig deep into material under subheads: Medications, Pharmaceutical Industry, Billing, Medicare, Hospitals, etc.
• Clear Health Costs: Cracking the Code Coverage. In April 2017, New Orleans PriceCheck, reporting on and crowdsourcing health prices with partners WVUE FOX 8 Live and NOLA.com/The Times-Picayune, began saving its readers and listeners lots of money by comparing health care prices publicly. Says Jeanne Pinder, "We use shoe-leather journalism, data journalism and crowdsourcing to reveal the mysteries of pricing. The project is on fire, with hundreds of people sharing their stories, commenting, and sending in their EOB's [explanations of benefits]. The hospitals are extremely upset with us, and we have been able to save people hundreds of dollars Read More 

by Pat McNees
Resources for when terminal or life-threatening illness requires decisions about what individuals, families, and professional caregivers should do. Let's start with
• Five Wishes (Aging with Dignity -- changing the way we talk about and plan for care at the end of life). Five Wishes lets your family and doctors know:
---Who you want to make health care decisions for you when you can't make them.
---The kind of medical treatment you want or don't want.
---How comfortable you want to be.
---How you want people to treat you.
---What you want your loved ones to know. Read More 

Updated 5-24-18. by Pat McNees
I've listed here various "scorecards" and ratings for different aspects of the U.S. health care system, because they're a step toward helping consumers figure out how to choose healthcare providers, services, and institutions. The problem is, different groups choose different ways of evaluating doctors and hospitals and to the extent that some use some punishment measures to protect consumers (measures which might work against ratings for doctors or hospitals that try to provide more and more sophisticated services, for example), and that some measures seem to conflict, this must all be taken with a grain of salt. Also, some ranking systems don't rank all hospitals in a system-- rank only those that fit criteria that group (e.g., Leapfrog) chose to rank. Be sure to take a look at the bigger picture because the ranking organization may not be. There is also at least one paradox in ranking systems: Sometimes the better academic hospitals get worse rankings (in a system such as Leapfrog) because they're better at reporting adverse events, they tend to treat more difficult cases, and they often treat patients of lower socioeconomic status, whose health may be worse to begin with.
Ratings are an important step toward making health care more transparent for consumers. Scroll to the bottom for some fairly recent criticisms and Norman Bauman's analysis of problems with various rating systems.

[Back to Top]

• Hospital Compare (Medicare)
---CMS unveils updated hospital star ratings formula (Maria Castellucci , Modern Healthcare, 12-21-17). An explanation for after the methodology changed, so that instead of 83 five-star hospitals using CMS data there are now 337.
---Kevin MD writes: "While the federal government has steadily expanded the number of publicly available measures on its Hospital Compare website, it still falls short of what many patients, payers, and providers would like. This is particularly true in the realm of outcomes such as infections and mortality rates, and in provider-level ratings." (2015)
---What journalists should know about hospital ratings (Liz Seegert, Covering Health, Association of Health Care Journalists, 6-24-16) "Journalists should take hospital ratings with a healthy dose of skepticism, according to experts at a recent AHCJ New York chapter event. Simply looking at an institution’s overall rating is just the start. Reporting that without understanding what’s being rated and how 'success' is measured does a disservice to your audience."
---Only 251 U.S. hospitals receive 5-star rating on patient satisfaction (Sabriya Rice, Modern Healthcare, 4-16-15)
---CMS gives 215 hospitals 'five stars' for patient experience. See how yours fared on our map. (Advisory Board, 8-15-17) CMS recently updated its Hospital Compare website with new Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) summary star ratings for 3,504 hospitals.

• HospitalInspections.org (website/database run by the Association of Health Care Journalists, AHCJ) makes federal hospital inspection reports easier to access, search and analyze. Includes details about deficiencies cited during complaint inspections at acute-care, critical access, or psychiatric hospitals throughout the United States since Jan. 1, 2011. Does not include results of routine inspections or those of long-term care hospitals. See A Q&A with CMS: Getting up to speed on inspection reports, in which the Centers for Medicare and Medicaid Services answers questions about the inspection process and the 2567 forms used to complete the inspections. Other sidebars include How to read inspection reports, Sample inspection report, Points to keep in mind about this data, States that put hospital inspection reports online.
• The Leapfrog Group The Leapfrog Group (a nonprofit) promotes improvements in the safety of health care by giving consumers data to make more informed hospital choices. It compares hospitals using data from survey responses. Search by location to compare hospitals against criteria such as inpatient management, maternity care, high-risk surgeries, etc. Says one health care journalist, "One caveat: If your hospital is good at finding and reporting complications, they look bad, even if they are doing everything right."

• Quality Check. Search and compare hospitals that have received a gold seal of approval by The Joint Commission, which oversees the accreditation and certification of nearly 21,000 healthcare organizations and programs in the U.S. You can see accreditation history for each qualifying program, and quality reports are available to download. (Highly rated by HealthWeb Navigator.)

• Room for Better Safety at Surgery Centers, Survey Finds (Joyce Frieden, MedPage Today, 10-22-19) Ambulatory surgery centers (ASCs) and hospital outpatient departments (HOPDs) aren't doing all they could to ensure patient safety, according to a report from the Leapfrog Group--which finds gaps in board certification, hand hygiene monitoring.

• Medicare Compare search pages
---Dialysis Compare
---Home Health Compare
---Hospital Compare
---Inpatient Rehabilitation Facility Compare
---Long-Term Care Hospital Compare
---Medicare Plan Finder
---Nursing Home Compare
---Physician Compare

[Back to Top]

• Medicare Prepares To Go Forward With New Hospital Quality Ratings (Jordan Rau, Kaiser Health News, 7-22-16) "Despite objections from Congress and the hospital industry, the Obama administration said it will soon publish star ratings summing up the quality of 3,662 hospitals. Nearly half will be rated as average, and hospitals that serve the poor will not score as well overall as will other hospitals...The government says the ratings, which will award between one and five stars to each hospital, will be more useful to consumers than its current mishmash of more than 100 individual metrics."

• HospitalFinances.org (AHCJ, Bringing transparency to nonprofit hospital finances). See New site gives access to nonprofit hospital financial data (Len Bruzzese, AHCJ, 5-23-18)

• Surgeon Scorecard. ProPublica's informal website shows death and complication rates in eight types of surgery, showing results on all surgeons, good or bad. with 20 or more surgeries in a category. See USA Today story 'Surgeon scorecard' measures docs by complications.But also, see Kevin MD's criticism of  Read More 

Norman Bauman posted the following story, about his experience with
his mother, on the Association of Health Care Journalists listserv.
I reprint it here under Creative Commons license 2.0 (with author's permission)
https://creativecommons.org/licenses/by/2.0/

When living wills are not enough
by Norman Bauman

My experience is that living wills aren't too useful (and there is
published research to support that). I would suggest that you  Read More 

Updated 9-18-21   
First published 02/29/2012. The CDC estimates that about 30,000 Americans have Lyme disease (a tick-borne disease, particularly common in areas with big deer populations), but the numbers may be much higher. Chronic (or late-stage) Lyme disease is a disease for which patients have trouble getting a timely diagnosis and adequate treatment. The disease can affect the skin, joints, nervous system, and other organ systems--and some patients present initially with psychiatric problems (full-blown manic episodes, for example). Dissension in the medical community  Read More 

Updated 11-17-22

 

Writing about wartime experiences and memories? Some of these resources may be helpful or inspiring:

• My Grandfather’s Secret D-Day Journal (Barry Svrluga, Washington Post, 5-30-19) A powerful story in which voices from the past and present reveal a lifetime's emotional history, with a journal from the past bringing the horrors of D-Day vividly to life.
• Veterans History Project (capturing personal accounts of American war veterans and U.S. citizen civilians involved in war efforts, such as USO workers, flight instructors, medical volunteers). You can download the VHP field kit and forms online.
• Veterans who write -- and writing about wars and the military (Pat McNees's site about dying)
• History Interpreters Keep Alive Memories of Fallen D-Day Soldiers (Bill Hinchberger, Epoch Times, 6-5-19) Cambridge and Normandy count among the 26 U.S. military cemeteries and 30 memorials in more than a dozen countries administered by the American Battle Monuments Commission (ABMC), a U.S. government agency. Most commemorate the service of Americans in World War I and World War II. As the generations who lived through those wars have nearly died off, the agency's mission and “target audiences” have shifted, said Jerry Lefler, deputy director of cemetery operations at the Normandy American Cemetery. “ABMC is making a transition from a mourning to a commemorative agency.” “Most of the direct relatives of people from World War I and World War II have passed away,” said Lefler. “How do we keep our cemeteries, our story, and the stories of those buried there relevant?” Constant Lebastard added, “We are not teachers. We give people an idea of what happened and make people think.”
• Writing War: A Guide to Telling Your Own Story (Ron Capps, CreateSpace). Written by a veteran for veterans, it details the elements of craft involved in writing both fiction and non-fiction. The Veterans Writing Project uses the book in its  seminar and workshops for members of the armed forces, active and reserve, who want to learn about writing in order to tell their stories. Capps is also author of the memoir Seriously Not All Right: Five Wars in Ten Years.
• Soldiers Lost and Found: Students Rediscover the Fallen (Michael M. Phillips, WSJ, 10-20-12). A generation of Tom Clark's high school history students have been tracking down the families of Indiana's war dead and creating an archive of their stories. "His classroom is like a forgotten corner of the Smithsonian."
• Top Reasons to Record Your Military History (Mary V. Danielsen, Documented Legacy).
• Writing Vietnam (Donna Apidone, Next Avenue, 11-11-22) For military veterans who served in Vietnam, the past few years have been a time to open the memory vault. Decades after their service, they feel free to document and publish their experiences.The catharsis of writing their memoirs helped two Vietnam veterans heal. Some discussion of teh book
• Because Our Fathers Lied: A Memoir of Truth and Family, from Vietnam to Today by Craig McNamara. The author came of age in the political tumult and upheaval of the late 60s. While Craig McNamara would grow up to take part in anti-war demonstrations, his father, Robert McNamara, served as John F. Kennedy's Secretary of Defense and the architect of the Vietnam War. "This unforgettable father and son story confronts the legacy of the Vietnam War across two generations." In filmmaker Errol Morris's 2003 documentary =The Fog of War, Robert McNamara admitted he was wrong in his directives in Vietnam. His son says that apology was not enough.
• Long Time Passing: Vietnam and the Haunted Generation by Myra MacPherson. As this important book makes clear, we will be paying the costs for Vietnam for long years to come. Myra MacPherson not only lived through the Vietnam years, she writes with the insight of one still deeply caught up in the issues of that tragedy." ~George McGovern
• A Year at War (stories of the 30,000 men and women of First Battalion, 87th Infantry, taking part in the Afghanistan surge), excellent New York Times video series.
• Writing the War (Colin Wilhelm, Narratively, 11-14-13) Distraught by his peers’ disengagement from a war still being waged, a shaken Afghanistan veteran helps fellow fighters put their war wounds into words.
• If I Die in a Combat Zone: Box Me Up and Ship Me Home by Tim O'Brien. An intensely personal account of his year as a foot soldier in Vietnam. NY Times review: ""O'Brien brilliantly and quietly evokes the foot soldier's daily life in the paddies and foxholes, evokes a blind, blundering war."
• The Things They Carried by Tim O'Brien. "They carried all the emotional baggage of men who might die. Grief, terror, love, longing--these were intangibles, but the intangibles had their own mass and specific gravity, they had tangible weight. They carried shameful memories. They carried the common secret of cowardice.... Men killed, and died, because they were embarrassed not to."
• Writing About War: I Hate It but Can’t Stop (Don Gomez, Daily Beast, 9-2-13)) Among veterans of war, there has always been a tension between wanting to tell everything and wanting to say nothing at all, writes Army veteran Don Gomez.
• Home Fires (George Packer, New Yorker, 4-7-14) How soldiers write their wars. The new war literature by veterans is largely free of politics and polemics.
• The Last Ring Home: A POW’s Lasting Legacy of Courage, Love, and Honor in World War II by Minter Dial. Minter Dial’s grandson, named for him, spent years of his own life tracking down facts, and interviewing more than one hundred interviews with experts, survivors, and descendants of the Greatest Generation to tell the powerful story of American prisoners of war in the Pacific.
• Women Writing War: A List of Essential Contemporary War Literature by Women Kayla Williams, Los Angeles Review of Books, 5-26-14)
• Dad's Message Recorded At War, A Gift Given Decades Later (NPR, 1-4-14). See also At 71, finally hearing her father's voice (Susan Reimer, Baltimore Sun, 12-27-13) and listen to the hour-long original show.
• Ben Patton on interviewing military veterans . Listen to 21-minute R.J. McHatton's audio-only interview with documentary filmmaker Ben Patton about the process of making short films about veterans.
• Veterans, Alone Together, Share Stories They Can’t Tell You (Lawrence Downes, NY Times Editorial Observer 10-5-08,writing about weekend workshop run by Vets 4 Vets, a Tucson nonprofit that is setting up peer support groups around the country for a new generation of veterans making the transition from "hunter-killer" mode to husband-student mode)
• Harry Lamin's letters from World War I, a blog on which letters from an English soldier are posted by his grandson exactly 90 years after they were written; now the son has died and the grandson has taken over, but there are also links to new blogs that this one inspired. Maybe it will be a model for someone you know!
• Virtual Wall, Vietnam Veterans Memorial (look up Vietnam War casualties by name, place, date, and other details--get more info, add a photo, etc.)
• African American history records (Ancestry.com). Slave narratives, troop records for U.S. colored troops in the Civil War, Freedman's Bank and Bureau records, World War I draft cards, etc.
• After the Wars. Chicago Public Radio's weekly series of short radio stories and images of America's veterans--a Points of View Production by Paul and Ben Calhoun, ed. by Cate Cahan. Click on image to hear vet's story.
• Lives During Wartime (Home Fires Readers, NYTimes, American Veterans on the Post-War Life, launched 11-10-09)
• Mama Always Comes Home (Debbie Brodsky, Bethesda Magazine, 2-10, on creating a deployment video: a military mom's messages to her children)
• My Son, My Soldier, My Sorrow.(Janet Burroway, St. Petersburg Press 6-13-04). Three essays written over 20 years by a liberal, pacifist mother struggling to understand her conservative son, a proud soldier and member of the NRA
• World War 2: 'We All Had a Piece of Hitler's Desk'. Joy Hunter recalls a remarkable life, working in Churchill's War Rooms and attending the historic Potsdam conference in 1945. (Elizabeth Grice, Telegraph, 9-3-09)
• Singing Away the Wounds of War (Niva Dorell Smith, Narratively) Chuck saw atrocities in the jungles of ‘Nam. Chris was attacked by America’s allies in Afghanistan. Anni was assaulted back at home. How a legion of traumatized vets are turning tragedy into song.
• Memoirs of war and conflict: A reading list (Writers and Editors)
• More War and Peace stories (Narratively)
• Pasadena Veteran Collects War Stories For Posterity (Jenny Dumont, Pasadena Voice, 9-23-15). If you aren't a writer, find someone to record your story!

 

Organizations for veterans who write

• Veterans Writing Project . Offers no-cost seminars and workshops for members of the armed forces, active and reserve, who want to learn about writing in order to tell their stories. Their core curriculum is Ron Capps's book Writing War: A Guide to Telling Your Own Story. Written by a veteran for veterans, it details the elements of craft involved in writing both fiction and non-fiction. The Veterans Writing Project publishes a blog and a literary journal O-Dark-Thirty .
• Warrior Voices ( Cecilia Capuzzi Simon, NY Times Education Life, 2-1-13). Veterans learn to write the words they could not speak.
• A Million Strong: Helping Them Through (James Dao, NY Times Education, 2-1-13). Serving the surge in military students puts colleges to the test. Teaching veterans to express their experiences helps them heal.
• Veterans group, Maxine Hong Kingston together use writing to heal (Justin Berton, San Francisco Chronicle, 1-7-08)
• Back From The Brink: War, Suicide, And PTSD (Ron Capps, Health Affairs, July 2010)
• Veterans Writing Project: Nation's Heroes Write of Pain, Personal Triumphs (John Bachman, Newsmax, 5-27-12)
• Warrior Writers (based in Philadelphia)
• Syracuse Veterans’ Writing Group
• Veterans' Writing Group of San Diego County
• Black Hills Veterans Writing Group
• Military Veterans Writing Workshop (Writers Guild Foundation)
• The Journal of Military Experience
• The Veterans' PTSD Project , which also has a page linking to resources for veterans who want to write

[Back to Top]

These days it is far easier to access the rich store of U.S. military records. Here are some links to resources:
• U.S. military service records, how to get copies (U.S. National Archives)

• Fold3 (for the third fold of the flag) and the Fold3 blog. Original historical and military records from the National Archives, “most never before available  Read More 

T.L.’s mother was a supermodel and his father was a photographer of horses and high society. T.L. trained as a physicist, working in underwater acoustics on Navy contracts for anti-submarine warfare, but his passion was photography. Kristie and I had fun putting together a book of his photos, which he refused  Read More 

T. L. Hawkins died Sunday, October 5, after a long illness. I'm posting one of my favorite of his beautiful photographs. Taking photos and listening to music were the two things he loved best, next to spending time with his wife, Kristie.

Here's a photo of TL. Read More 

Having spent four weeks in a hospital this year, for a near-fatal infection that wouldn't have become so serious if medical practitioners had advised the right thing early on, I am particularly interested in what doctors can do to regain the trust of their patients and what patients can do in their own interests. Not until my brother flew in to monitor what was going on  Read More