CAREGIVERS PROTECTING PATIENTS

For two months I had been searching for an audience for a presentation about my book, Waking Up Dying, without any luck.

I had written my book with three audiences in mind: healthcare providers (doctors and nurses), caregivers (friends, family and loved ones of patients) and patients (stricken men and women, mainly with terminal diagnoses).

Free review copies sent to providers had been ignored. A jury of doctors had banned my book from the patient’s library at the cancer center, which had treated my wife, the subject of my book.

Caregivers, mainly for terminal cancer patients, had so far proven impossible to reach. Active caregivers of current patients were temporarily inaccessible to me because I hadn’t figured out yet how to reach them. One barrier to reaching them was that they met in the cancer center where my book was banned. And while I hadn’t been personally banned from the cancer center, I felt that without a contemporary patient I lacked credentials as a caregiver and was not welcome. I did not want to test the suspicion by imposing on working caregivers in the cancer center setting. That would be too self-serving.

Cancer patients, especially terminal ones, had too much to deal with battling their disease and I lacked an introduction to any patient that might be interested.

Geography was against me. Bellingham, Washington, where I lived and where Waking Up Dying was set, was a small town with a small population of caregivers and cancer patients. There were not many sources, such as in Seattle, from which to recruit an audience.

There was a small organization of past brain cancer caregivers who were friends, family or loved ones who had lost someone to cancer. They were accessible and I was one of them, but presenting to them would have been preaching to the choir. Besides, they had already heard most of what I had to say.

Looking into a potential local audience a bit further I discovered that we past caregivers were kept firmly segregated from the active caregivers’ group by the barrier of no patient to endow us with credibility. We were has-beens. It was true. We were just hangers-on to those on the frontline of cancer.

So here I was with a book and information helpful to cancer patients and caregivers, and to cancer treatment providers, and no audience to whom to speak. So much time, effort and expense invested, and I could only send forth my book like a message in a bottle cast into the sea. I had already waited two years while I wrote and published the book, and I could only continue to wait.

Then an email arrived from Seattle, 90 miles south of Bellingham. The writer said she had heard of my book and me. She was the volunteer organizer of a brain cancer support group, which she thought would like to hear about my experience. The group was meeting that evening and didn’t have a guest speaker, and while it was terribly short notice, I could speak at their meeting this evening at 7:30 p.m.

It would be a mixed group of caregivers and brain cancer patients, sometimes including newly diagnosed patients, and typically with a mix of long-term survivors and others many months into initial treatment.

I was excited and enthusiastic. Long ago I had drafted a presentation, but had never presented it to an audience for whom I had created the book. This was the break I had been longing for.

My presentation was titled Six Things I Wish Patient’s Knew About Healthcare:

o   Bankruptcy Is More Feared Than Death

o   Acute Care For The Dying Is Rationed

o   The System Works Against You

o   Corporate Values Dominate Care

o   A System ofHealthcare Is An Enigm

o   Patient And Caregiver Are Powerless

That evening I spoke for about an hour, carefully explaining each of the six things I wished patients knew. Around the table the faces stared back at me as I spoke. As I let my eyes roam from person to person I saw looks of dismay.

I didn’t have to wonder what was upsetting them. What I was saying was frightening them. I quickly wound up my presentation, generalizing the remaining material and quickly switched to taking questions or comments.

A man raised his hand and said that the treatment he was getting where we were meeting was excellent and gave me a couple of examples. I quickly agreed and offered that the care my wife got at this facility was the best she had received and I wished all care could be as good. A sense of relief visibly swept around the meeting table. My host then suggested that the meeting take up the remainder of its agenda.

When the attendees broke up into separate discussion groups, my host leaned over from her chair and spoke quietly. “Patients need to feel they can trust their treatment,” she said. “They have to have hope even if there is none.”

Later, a couple of caregivers who had accompanied their patients to the meeting came up to me and said they knew exactly what I had been through and understood what I was saying, and bought my book.

I felt badly about frightening patients and realized I must think more carefully about tailoring my message more precisely for the audience. What made me feel even worse was that I knew better, but had lost touch with my own experience in the three years that had elapsed since my wife’s death.

I had taken on the role of an aggressive, assertive and determined caregiver in order to spare my wife from the threat and bitter reality of dysfunctional and indifferent healthcare. I didn’t want her, in her deteriorating and weakening condition, to have to confront the problems and unreasonable demands imposed by treatment and care by thoughtless providers she was dependent on for the quality of her remaining life.

Now here I was inflicting on patients like her the fears and doubts I knew patients needed protection from.

In a later exchange of emails with a patient who thanked me for my “very sobering talk,” she told me her personal story: “When I was diagnosed with leukemia back in 1976 (followed by a brain tumor in 2002,) my doctor sat down with me and told me that the cure rate was currently less than 50%, but as far as he was concerned, we were going for 100%. I believed him, and I must say that if it hadn’t been for his most positive and supportive insight in moving forward, I doubt I’d still be here today.”

Though my book focuses on healthcare system problems, and care and treatment issues, I mustn’t lose sight of my book’s bigger message, which is that caregivers can deal with these problems and issues to provide their patients with some of the trust and hope so beneficial to them.

My next presentation will focus on the caregiver as the patient’s hero rather thanthe terror of problems facing caregivers.

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