Health Care Patient Rights

I remember only too well some years ago, when a friend phoned me in the wee hours of the morning, from her relatively new southeastern home across this continent from my Los Angeles area residence. She shared in great detail how one night earlier she couldn't sleep, that concern about breast cancer was on her mind, though she faithfully had regular mammograms and even had one quite recently. Still, she was uneasy, since ever-present fibroids made new lump detection difficult, plus there was a history of breast cancer in her family.

She related how she engaged in breast self-examination that night; described the uncertain but anxious feeling she experienced when she thought she had discovered a new lump. Finally, she woke her husband, whose examination of her breast was cautiously confirming that the lump did seem new. Subsequent medical consultations, examinations, tests, biopsies and all that entails, revealed she did, indeed, have a new lump; one her recent mammogram, and earlier ones, had failed to detect. Periodic phone calls from her kept me apprised of medical results, and then late one night, there was the dreaded call informing me of the unwanted malignancy diagnosis.

When we concluded that conversation, I thought of how we first met. We happened to move into neighborhood homes across the street from each other at about the same time. She came to my door to welcome me to the community, but as she soon confided, she was seeking someone she thought she could trust, with whom she could talk in confidence. She was having fibroid pain which raised breast cancer concerns in her mind.

During the years she lived in our town, another of her family members did develop breast cancer, which only served to heighten her self concerns. Twenty some years later, after having moved from our community, I received that late night phone call from her home in the southeast. I heard her pronouncement about herself, using a word I hoped I would never hear her speak, "malignant."

Ultimately, her breast had to be surgically removed and she went home with her husband to their relatively new residence. They did not have family in the state, but were gradually making friends in their new community. Their adult children resided on the opposite northwest coast from where my friends had moved.

We talked numerous times as she chose, using the three hour time difference for late calls west to me, to her advantage. Then, she phoned me again late one night, well into her battle against this ravaging disease. She described how she had to come home from the hospital with draining tubes protruding from her body, for which her husband was having to provide the care. She described feelings of distress, concern for his physical welfare due to the challenge of caring for her, despite some medical issues of his own.

I thought, for optimal gains during this time, she really needed to be thinking only about her own recovery, but not easy for her to do under the circumstances. I recall the sense of surprise and concern I felt that she had been sent home from a hospital setting still requiring all the care she described, not to mention the risks associated with possible infection.

Health care today, all too often, has workers other than the doctor and patient making medical care decisions. The insurer third party decision makers can be influenced more by financial considerations than what may be best for the patient. One medical problem that has aroused concern over just this issue is that of women who undergo breast removal surgery like my friend did.

My appreciation and thanks to DiAne Gillespie artist/musician who brought to my attention an important "Lifetime TV" article on the matter. A nurse's reality-based free verse emotional account of her thoughts and feelings associated with care of mastectomy patients is also printed there.

Reading the article, I am encouraged efforts are being made to address quality of care issues for women who have mastectomies, but our help is needed. We have an opportunity to sign a petition declaring a desire for bipartisan political support in passing Congressional legislation to benefit women who have mastectomies. The "Lifetime TV" article reports:

"In January 2007, Senators Olympia Snowe (R-ME) and Mary Landrieu (D-LA) and Representative Rosa L. DeLauro (D-CT) reintroduced the Breast Cancer Patient Protection Act of 2007 (S. 459/H.R.758). The bill would allow a woman and her doctor to decide whether she should recuperate for at least 48 hours in the hospital or whether she has enough support to get quality care at home following this emotionally and physically difficult surgery."

Last year Grammy-nominated singer-songwriter Jewel was joined by "Lifetime TV" in delivering 12 million petition signatures to Congress supporting the bill. Now they have 5,000 more signatures. Additional signatures are requested from any of us who share the desire to let our Congress persons know we want this bill passed and signed by the President.

Women and the men who care for them can sign the petition
at this "Lifetime TV" link urging Congress to pass the Breast Cancer Patient Protection Act of 2007 (Senate Bill 459/House of Representatives Bill 758) "...to ensure no more women are forced to experience a 'drive-through' mastectomy."

There are many worthy causes deserving of support. I won't always attempt to write about all of them, but this particular issue is of special significance to me.

As for my friend of strong character and courage, she participated in a medical research study at a highly respected hospital in her area. She entered the study with the expectation she would be one of the small minority, despite her high level stage of disease, to overcome her renegade cancer cells. In spite of chemo treatments, a bone marrow transplant, the strength she derived from her religious faith, her husband's, family and friends' support, supplemented by a local support team comprised of medical staff and others, she was unable to overcome the head start her cancer had in her lymph nodes before its detection.

She is another friend who has continued to be missed these years, just as far too many of us experience in our lifetimes and at any age.