Thanksgiving: For Karen and Courage

The opinions expressed herein are exclusively mine. 

I  have many reasons to be thankful this Thanksgiving. I am alive. I have many people to thank and I will. But I want to acknowledge my friend Karen. She made the call that led people to my door when I was probably hours from death.

For my thankfulness I want to honor her courage. She died on August 27 after years battling Ovarian Cancer. The cancer started in her ovaries. It was temporarily contained by chemotherapy only to migrate to her brain where it was stalled by radiation. But then it found her spine and crept into her spinal fluid. There was no mistaking what was before her.

The Centers for Medicare and Medicaid Services (CMS) said it wants to reimburse doctors for end of life discussions. This provision, if passed, will not start until 2016. It is solely about discussion. Not action. Many already rail against it. But we need theses discussion with our families and physicians about what we want at the end of our lives or we could die in ways we would not wish.

Much attention focused recently on a terminally ill young woman who moved to Oregon so she could have a dignified death she could control. She did not have that choice where she lived in California. Only three states have Death with Dignity laws now: Oregon, Vermont and Washington.  http://www.deathwithdignity.org/acts

We won’t all agree on Karen’s path. It is, however, what she chose. We do deserve to have control over our own lives. Our lives are ours. Atul Gawande, MD, in his new book Mortal Lives examines the importance of discussing our choices so they reflect our wishes at the end of our lives when people too often are faced with others making decisions for them. As nearly happened to me.

We need these end-of-life discussions. Continue reading

Posted in patients' voice | Tagged | 1 Comment

From the Heart: Too Many Mired Mantras

New attempts after attempts to slaughter the Affordable Care Act drive stakes into my heart.  I cannot be silent and remain true to myself and others.

From 2003 to 2009 we at CodeBlueNow! had the honor of working with the American people to learn what they wanted in a health care system.  They did not care about specific prescribed, slogan solutions from the right or the left. They said they wanted a fair system that works for them, their  families and neighbors. They want accountability, equity and affordablity: http://www.oconnorreport.com/old/codeblue/VotersHealthCarePlatform.pdf

We were honored by The Seattle Post Intelligencer which  ran a 10 consecutive week series on the need for health care reform. Authors included former Republican and Democratic governors, a national technology executive, small business owners and franchise business owners among others. Read the papers here:  http://www.oconnorreport.com/old/codeblue/vital-signs/codebluenow-papers-seattle-pi-series/CBNpapers.pdf

In 2000 I wrote: The Buck Stops Nowhere: Why America’s Health Care Is All Dollars and No Sense. A second edition was published  in 2003.  I am now updating it. The following testimonials supported the second edition: http://oconnorreport.com/testimonials/

Continue reading

Posted in consumer protection, Health Care Reform, patients' voice, policy and politics | Tagged , , , , , , , , , | Leave a comment

A Story of Courage, Grit and Love: Don’t Be Passive–Be Engaged

This could be just Bill’s story but his courage and determination are intertwined with the love and tenacity of his wife Kerri. He would not be alive without their mutual grit.

Bill was a successful banker with a full life. And then little things began happening to him that seemed odd. His face burned and he could not stop constantly hiccupping. It became so bothersome that his doctor finally recommended an MRI. They found a cyst on his brain stem.

They interviewed neurological surgeons. One did seven to eight such surgeries a year. Through a friend they found another neurological surgeon who did seven to eight such surgeries a day.

It was complex surgery. Bill needed it to live. When they asked if the surgery was life threatening, the surgeon said: “Absolutely. You need to get your affairs in order.” But the surgery was a success.

He was in the neurosurgery ward. Bill was in the ICU for a week and in the hospital for another week. He went home thinking all was well.

A month later the symptoms returned. The surgeon could not do a biopsy. The nerves were too entangled. They did another MRI. The cyst had re-filled. Bill faced another surgery to put in a stent to drain the cyst. Within three months Bill’s symptoms returned. Then came another surgery with a longer stent.

Within a month a staph infection developed in the stent and it had to be removed. This was Bill’s fourth operation in 15 months.

Kerri navigated his care from the beginning. She is an attorney and is particular about details. She double checked the neurosurgeon’s appointments and orders. She made sure Bill was getting the right medications at the right time and in the right form. Nothing escaped her attention. She had had her own health care experience and knew the importance of paying attention. When she was given the wrong medications once she refused to take them until they brought the right ones—even though she was labeled a “medication hoarder and a thief.” Continue reading

Posted in patients' voice | Tagged , , , , , , , | Leave a comment

Health Care is Foreign: Excerpt From Gifts From A Stroke

Health Care Is A Foreign Country

Do you have a passport? In this case that means insurance. Even if so, the question is: Is this country friend or foe?

Let’s see: If you are sick you are pretty much on our own. Entering the health care system is like arriving in a strange land without a guide or translator. There is no embassy to explain local customs. The customs and rules vary by state and insurer.

No one speaks the same language even among health care professionals, not to mention insurers. They all have their own dialects. There is no interpreter to tell you what something means, even in English.

There are no clear rules. The insurance you have or don’t have dictates the care you can receive and how much you have to pay. Many insurers tell you what hospitals you can use, the doctors you can see, the medications you can take, how much they cost and how much time you can spend with your doctor. Costs differ between insurer and health system. Some are based on your income, age or disability.

Continue reading

Posted in consumer protection, patients' voice, policy and politics | Tagged , , , , , , , , , , , , , | Leave a comment

What Hospital Executives Earn: Part III–What You Can Do

Every day since June 2013 people have opened the  story:  “What Hospital Executives Earn.”   Sometimes one person, sometimes 13 or 14 and sometimes 4 or 5, but it is opened every day.  Some click on the link to the data. Others don’t.  But people come to that story every single day.

I have written three stories about hospital CEO compensation:

http://oconnorreport.com/2013/06/what-hospital-executives-earn

http://oconnorreport.com/2013/09/hospital-ceo-compensation-and-community-benefit-where-is-accountability

http://oconnorreport.com/2014/06/what-hospital-executives-earn-2013-update

These stories are based on filings hospitals send to the IRS and report to the Washington state Department of Health.  Washington was probably the first state to require this.  Not every state does.  The bill was introduced by Representative Laurie Jinkins.  http://apps.leg.wa.gov/billinfo/summary.aspx?bill=2229&year=2011

Problems of patient safety, incomprehensible billings and lack of transparency remain.  There is only one thing I think we can do–each in our own communities:  hold the boards of directors accountable and hold your local Congressman/woman and state representative/senator accountable for patient safety and understandable bills. 

They live in our communities. They read the local newspapers and listen to local radio and TV. They follow social media.  As does their public relations staff.

We must also be accountable.  Tirades and rants are too easy to dismiss.  But, if we are going to have safe and accountable health care it is up to us to demand it.

This will not solve all our health care system’s ills but it will be one step in the right direction.

We will never have accountability unless we demand it.

Coming Next: Gifts From A Stroke:  Follow the Money–If You Can.

Continue reading

Posted in consumer protection, Health Care Reform, health insurance, hospitals, patients' voice, Uncategorized | Tagged , , , , , , , , , | Leave a comment

Lest We Forget: A Look at Nixon’s Health Reform

In sorting through old papers I found an article about Nixon’s 1974 health reform proposal. Here is why he proposed reform:

  • The cost of a day in a hospital exceeds $110
  • The average cost of delivering a baby and postnatal care is nearly $1,000
  • The average cost of terminal cancer care exceeds $20,000

Here is what he proposed:  http://www.kaiserhealthnews.org/Stories/2009/September/03/nixon-proposal.aspx

These Costs Today:

Continue reading

Posted in Health Care Reform, patients' voice | Tagged , , , , | Leave a comment

Major Cost Variations Between Hospitals for Stroke Care

The Washington Health Alliance in Washington State just published a report on significant cost variations between hospitals for stroke care. While this data is only for Washington State it mirrors national practices:  http://wahealthalliance.org/new-report-on-hospital-sticker-prices-reveals-tremendous-variation-among-hospitals-for-similar-procedures-and-treatments/

This is one reason I intend to offer a platform for patients:   http://www.madisonparktimes.com/Content/News/Top-Stories/Article/Creating-a-platform-for-patient-empowerment/26/284/29625

Kathleen O’Connor (c) October 1, 2014

Posted in consumer protection, hospitals, patients' voice | Tagged , , , , | 1 Comment

Gifts From A Stroke: Excerpts–Chapter 2: Rehabilitation: What You Should Know

My memory began to return when I was moved to Rehab…..I soon learned Rehab specialists are like drill sergeants and chief petty officers. Their job is to be sure I was “up and at ‘em.” They trained, trained, and re-trained so even the smallest task was embedded into my brain. They were to assure I would win on the battlefield of my recovery. Or at least have a fighting chance of surviving with my new normal….

There is a concept called “neuroplasticity” of the brain. The brain has the capability of healing depending on the injury. If a harmed patient is not challenged mentally or physically, however, the brain will not build new neural pathways to replace those lost or connect those torn apart….

Does everyone get…rehab care? And who pays for it? Turns out the answer is: It Depends…..

I was still in a life boat on strange seas, but by this time I had at least learned how to row even if I had no idea how I was going to get back to known shores…

What You Should Know: Continue reading

Posted in health insurance, hospitals, Medicare, patients' voice | Tagged , , , , , | 1 Comment

Gifts From A Stroke: A Veteran’s Cancer Story

In the last post Gerrit said he had to take a loan against his house.  He had health insurance but he could not work.  He had mortgage and living costs in addition to medical.  Social Security will enroll people in Medicare if they are disabled.  It takes about a year to activate.  Here’s another story.  This time about a cancer patient who’s a veteran:  Continue reading

Posted in consumer protection, hospitals, Medicare, patients' voice | Tagged , , , , , , | Leave a comment

Gifts From A Stroke: Gerrit’s Story

Gifts From A Stroke: A Hard Look At America’s Health Care is not just my story. It is podium for others to share their stories.  I will publish more stories as I finish my book. Here is Gerrit’s Story.  Please feel free to share: 

********

My stroke experience began in August 2003 with what felt like a sudden crick in my neck.  The pain started interfering with my sleep and for some reason I would begin to black out if I held my head a certain way.  I went to see a chiropractor, but his neck manipulations did not help the pain.  He didn’t realize that he was actually aggravating a tear which had formed inside my vertebral artery, the real cause of my pain.  After three days of treatment I quit, but a clot began to form at the tear.

Continue reading

Posted in health insurance, patients' voice | Tagged , , , , | Comments Off