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Bellingham writer recounts ups and downs of healthcare during wife's 18 months with fatal brain tumor

Bellingham writer Robert Duke's book, "Waking Up Dying: Caregiving When There Is No Tomorrow," is graphic, intense and frightening.

Graphic because he doesn't hold back describing the damage from the brain tumor that killed his wife of 40 years, Shearlean.

Intense because Duke lays out the challenges and emotional toil he and his wife faced dealing with healthcare providers in Seattle and Whatcom County, with Duke as his wife's caregiver.

Frightening because they ran into mistakes and frustrations even though they had good insurance, were articulate and educated, and had their "end-of-life" paperwork set to go.

Duke, now 76, is a retired technical and non-fiction writer with the sort of research and planning skills that should have made navigating the healthcare system a relative snap. His wife, 64, was journalism department chairwoman at Western Washington University.

The Dukes moved to Bellingham in 1999. A decade later she was diagnosed with glioblastoma, a terminal, fast-growing brain tumor.

She died in February 2011, some 18 months after her diagnosis, longer than usual in such cases. During that time, her husband cared for her at home, except for four days after surgery in Seattle and four days in the hospital just before she died.

Duke saw his role as overseeing his wife's treatment, medications, finances and comfort, so she could focus on remaining as positive as possible about her prospects. In running interference for her, Duke was sometimes confrontational with doctors, nurses and office workers.

"The reader could judge for himself what he thought of my behavior given the circumstance, and decide whether such behavior was suitable to him," Duke wrote in an email interview. "Or he could judge that my behavior was unsuitable, and so tailor his own behavior according to my good or bad example."

Here are some questions and answers from my interview with Duke:

Are the names of healthcare providers in your book fictitious?

Yes, I made up names because I didn't want to do any finger-pointing. I feel providers and patients are both victims of the system, and I wanted readers to focus on the system.

I never felt we encountered any "bad" doctors. No one "harmed" Shearlean, but the system made care and treatment more difficult than it needed to be.

Who is the audience for your book?

I wrote it for caregivers, especially male caregivers for whom there is little available. It also was aimed at providers, to give them documented examples of what patients and caregivers are confronted by when in the system. I always had two audiences in mind; that's why the book is a rather complicated design.

Your wife's condition was acute rather than chronic. How did that impact her care?

I felt trying to care for an acute condition in a chronic-based system was a big part of the problems we had. The chronic system - the general care system - is geared to care and treatment in a different time frame. A terminally ill person is dying right now, every day, and so time is important because delays in medication and treatment are threatening and frightening.

My main example is the MRIs that were required to check on the status of her tumor. Every MRI was a big deal: Has the tumor enlarged? Waiting and waiting for the MRI results was nerve-wracking.

In the general care system, waiting a couple of days for MRI results is no big deal, but when you know you've got a tumor growing in your brain and the question has been raised about where it has grown larger, you want an answer right away. When the MRI could be ordered on Monday and the result reported on Tuesday, it is thoughtless and cruel to order it on Thursday and make the patient wait until Monday for the results.

Other example occur when medication that is delayed. Other treatments, like radiation, require simultaneous Rx meds. If the meds are not delivered, the radiation treatment cannot be performed and so critical treatment is delayed, which causes fear in the patient.

What practical changes would bring the most improvement in the short term?

I am using the book as a tool to make providers realize how patients and caregivers are - not could be - overwhelmed by the system. Few providers seem to understand how daunting and exhausting the healthcare system is.

Before the book, when I tried to explain this to providers, they always replied, "Like what?" Now, with the book and documentation, I can say like this and this and this. Care cannot be made too easy. Right now it is way too hard, and so it must be reformed if it is to be survived.

Nothing was more irritating to me or Shearlean than the endless requirement to continually provide HIPAA (privacy) release forms. The last one we provided either could not be found, it was available electronically, had expired or hadn't been shared with whoever we were dealing with.

We didn't need or want HIPAA privacy and asked for a master release form that would waive it for us. Apparently there is no such thing.

We were told a HIPAA form was good for 30 days or 90 days. We were advised to enter lifetime in the expiration space. When we thought we finally had it figured out, the form was revised and issued with no expiration date, but not everyone knew that. Repealing HIPAA would be a worthwhile change.

A healthcare plan user's manual would be a good change. Right now, no provider understands the function of the patient's plan, unless it is Medicare. The patient doesn't understand the plan because she has never used it extensively. Her benefits manager doesn't understand the plan.

Do you see helpful improvements underway in Whatcom County's healthcare scene?

I investigated every improvement I've heard of, and as recently as Monday, July 21, concluded that there has not yet been an improvement that relieves the burden of the caregiver. Some may be coming, but it will be incremental and slow.

You were free with your praise and also your criticism of healthcare providers. What kind of response has the book received?

I've had wonderful reviews, much better than I could have hoped for, but utter silence from healthcare providers.

Off the record, doctors, nurses and other providers have agreed with the book. Experienced caregivers all nod approval at everything I quote from the book.

Every provider with whom I have had a serious, in-depth conversation agrees that we need a single-payer system that everyone understands how to use, and we need to rid ourselves of this corporate model we've stupidly adopted.

Many civilians have told me it was interesting and a good read. Many call it a love story. I call it a loving story with the practical goal of influencing healthcare reform and helping caregivers cope.

You begin the book with a heartbreaking description of your wife's death. Why?

I modeled the book on a type of mystery novel called a procedural. Shearlean was a great lover of reading mysteries. In a procedural, your reader starts off knowing who the victim is upfront. Then the novel goes into the police procedure in finding out who the murderer is.

I felt every reader would know at the beginning who died, and so there would be no surprise there, but I felt the reader would want to know what led up to her death. So I start and finish the book with her death.

How have you tried to cope with life without Shearlean?

Losing a partner of more than 40 years creates upheaval, but feeling certain that I had done everything possible and that Shearlean had had a very good life and, relative to all other possibilities, a good death, I was at peace with it all.

Plus I had 18 months to deal with the inevitable. I made sure I socialized all I could, and if I felt a need for company I would call a friend and invite myself to their place for dinner. I was lucky to have inherited all of Shearlean's friends, and each one made a specific effort of include me in everything.

As with caregiver support, I availed myself of all the grief counseling I could handle, to take all of the advice I was offered seriously and pursue it to see if it would help. I tried everything, and I conclude it must have worked because I think I came through the two years following her death in good shape.

COMING UP

What: Robert Duke discusses his book "Waking Up Dying: Caregiving When There Is No Tomorrow," $17.95.

When: 7 p.m. Wednesday, July 30.

Where: Village Books, 1200 11th St.

More: Duke's website and blog is robertaduke.com.

Extra: A support group for brain tumor caregivers meets from 2 to 3 p.m. the first Friday of each month at PeaceHealth St. Joseph Cancer Center. Participation is free and no registration is necessary. Details; 360-788-8220.

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