By any measure, American healthcare is flawed. Exposing those flaws for examination and remediation is a legitimate way of dealing with them, or so I thought when writing my book Waking Up Dying: Caregiving When There Is No Tomorrow.
The flaws are nowhere more obvious than those on the very doorstep of 216,000 residents of Whatcom County, Washington, in the person of PeaceHealth St. Joseph Medical Center, Family Care Network (FCN) and Whatcom’s array of smaller clinics, individual practices and supporting services.
I set out to expose these flaws by documenting my encounter with them while caring for my terminally ill wife stricken with glioblastoma brain cancer from August 2009 to February 2011. I thought that by validating and verifying, in print, the impact of flawed healthcare on patient and caregiver, I could persuade an audience of healthcare providers to undertake the self-examination needed to reform obvious healthcare shortcomings and problems.
I was quickly proven wrong when I offered free copies of my book to the St. Joseph Cancer Center patient library, which instantly banned it as reported by Robert Schober in his July 2014 Whatcom Watch article titled Worse Than Cancer? Getting Needed Care, Says Local Author.
When I published my book in 2014, the Whatcom Alliance for Health Advancement (WAHA) was convening a group of experts and community leaders to transform Whatcom County healthcare – or so I thought.
WAHA, was established in 2002 by the St. Luke’s Foundation, with PeaceHealth and Whatcom County Health Department, “. . . to counter eroding access to healthcare” in Whatcom County. The outcome, though, in 2014, was its mission was diverted into a minor role of being “. . . a center of excellence for those impacted by serious, life-threatening illness,” not the more ambitious and major goal of “. . . transforming the current healthcare system,” WAHA’s original 2002 mission. The 2014 results were the Northwest Life Passages (NWLP) Coalition, which created Whatcom Cares (whatcomcares.org), the website for access to end-of- life care and services.
These results did not address WAHA’s original top two Whatcom County healthcare issues:
- The current health care system is broken. As a nation we pay more but receive less than most other industrialized countries. We need to change the way we deliver health care, beginning with our local delivery system.
- Economic forces need to be aligned so providers are paid according to the quality of their treatment, and the extent they help keep people healthy. Individuals using the service need clear information about pricing and payment obligations to effectively manage their own care.
The diversion has been so slick that reform’s history is now being retold as though it were the place where it was headed to from the beginning. Reformers are congratulating themselves on achieving their high aspirations when, in fact, evidence suggests reform is far off course, pushed into a corner where major reform is now out of sight.
Where do I think we are? Personally, I am no nearer my goal than I was in 2012 when I decided to write my book, but I still have my personal goal in sight. Others tell me, those who are pleased to have accomplished something that addresses any healthcare problem, that they are satisfied to have made life (and death) better than it was in the past. Of course they have, it’s just not where they were headed when they started out.
The Whatcom community has demonstrated it cares, but I insist that corporate healthcare has not demonstrated it cares. Rather, it has successfully diverted legitimate criticism and is the same today as in the past. As one local MD admitted to me, “We’re about 25 years behind times here.” Or, as I think, we’ve been bamboozled into focusing on the end of life instead of improving daily healthcare.
PeaceHealth, in its Whatcom County guise of St. Joseph Medical Center, dominates discussion and dictates the form and delivery of treatment and care for 216,000 Whatcom County residents. Family Care Network (FCN), the major alternative family medicine clinic, is ineffective in reforming county healthcare because it routinely abdicates initiative to PeaceHealth.
I was obviously delusional when I published my 2014 book, Waking Up Dying, expecting documented criticism to reform healthcare in Whatcom County and Washington State. It didn’t and it hasn’t (and it probably won’t), but I was determined to keep trying by writing a monthly healthcare column titled Whatcom: Chronic & Acute, which first appeared December 2013 in the monthly newspaper, Whatcom Watch.
Despite publishing approximately 40 columns about specific healthcare problems and needed reforms, and my Waking Up Dying blog attracting more than 86,000 hits in its four years of posting, I failed to have accomplished measurable reform.
For about four years I’ve been asking PeaceHealth to define a Hospitalist MD’s duties and responsibilities for inpatient care at St. Joseph’s, but I’ve received nothing. Letters about reform to 21 St. Joseph Foundation directors went unanswered by directors. I’ve pointed out that doctors diagnosing patients with cancer fail to promptly refer them to the cancer center; lung cancer patients had to assigned care navigators just to get them into treatment as early as possible. I reported about the unacceptable delays in getting appointments with specialists, routinely up to two months, and then receiving superficial and incomplete treatment. I complained about getting treatment based on a quota system instead of personal medical need.
And to anyone reading this who thinks this is about making a million dollars writing a healthcare book four years ago, I can tell you from writing other books, that the best way to make $1,000,000 writing a healthcare book in this remote corner of the U.S. is to have begun with $2,000,000. Everything I do I pay for out of my pocket.
In a small town such as Bellingham in a remote county it’s easy for a corporate bully to take over when it has you cornered.
For a contrarian view of corporate healthcare under PeaceHealth and St. Joseph Medical Center, and Whatcom Alliance for Health Advancement, Northwest Life Passages and others see the following:
- Waking Up Dying: Caregiving When There Is No Tomorrow – available at Village Books in Bellingham, Washington, and Amazon in print or kindle versions, or from the author’s web site.
- Waking Up Dying blog at robertaduke.com, online.
- Whatcom Watch column Whatcom: Chronic & Acute, monthly in print and online.
Useful books about national healthcare reform and patient/caregiver support include:
- You Bet Your Life! The 10 Mistakes Every Patient Makes, by Trisha Torrey (a book I continue to refer) updated 2014, diagKNOWsis Media.
- The Patient Advocates Handbook, 300 Questions And Answers To Help You Care For Your Loved One, by James Thomas Williams, 2010 Panglossian Press (excellent guide in talking to healthcare professionals).
- The Not So Patient Advocate, How to Get the Health Care You Need Without Fear or Frustration, by Ellen Menard, 2009 Barndolf & Company (the title says it all).
For more action-oriented healthcare reform books see the Resources page of my Wake Up Dying blog.
Not the end, hopefully.
