Monday, September 03, 2007

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) " 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.


  1. Your story about your friend is a sad one Joared. It seemed like she was consumed by the thought of getting cancer...and then it finally happened; and then, of course, the rest of her life was consumed with dealing with it. What a difficult way to live your days out.

    As for the health care system....I couldn't agree with you more. It's turned into a drive-through system....and it's wrong. We're all feeling more and more like members of a 'disposable' society.

  2. That is a very sad story, and it is terrible that your friend lived out her worst fears...The Health CVare System in our country is so very very bad now....It is truly atrocious....One more thing to send one into a deep depression...Lotd Help Us!
    I have signed that petition a number of years ago...That there needs to be a "law" about this is more than disheartening, isn't it?

    About this heat: I too pray the the DWP can keep it all together...This would NOT be a good thing at all. if we lost power....

  3. How sad this is!

    I am glad albeit outraged that my doctors haven't paid attention to that my mother is a breast cancer survivor and on my last visit someone actually listened and told me about a program for women like me who have no health care. It's called Pink Ribbon and funds annual mammograms and pap smears to at-risk women with no insurance. And yes, I qualify and am breathing a bit easier.

    Don't forget to go to The Breast Cancer Site and click to provide mammograms to women like me -- there's a link on my blog!

  4. Yes, I get so angry when I go to see my brother in law who is on Medicare and is in the hospital for lower back pain.

    He and a lot of other Medicare patients are kept in the hospital for weeks, having a good rest while down below women are enduring "DRIVE THROUGH" mastectomies. What a disgrace.

    Remember this at Election time. Forget the rich and their tax breaks. Give us Universal Health Care and have a little compassion .

  5. My daughter-in-law's mother is going through it right now. I hope that something is done soon.

  6. Yes, is a bit cooler now today....though yesterday was a tiny bit better...the late afternoon was horrendous so I'm still wiped....but very happy to feel that it is a bit cooler now....You stay cool, too!

  7. Joy: My friend was upbeat and enjoyed life, but did have the breast cancer concern in the back of her mind.

    oldoldlady: Stories like this can be depressing, but more importantly, I hope they personalize issues in such a way as to motivate all of us to prod our leaders to correct health care shortcomings.

    Yes, I'm finally getting cooled off here and hope you're continuing to benefit from the temp change.

    Kay: Glad you found a program like Pink Ribbon; new to me. As you and oldoldlady observed, the health care system is sadly truly not good. There are just too many people without coverage or unable to afford insurance. We have to keep prodding our leaders to take action to correct the problem.

    Nancy: If patients needs meet Medicare specified criteria hospitals will continue to care for them there. It does seems inconsistent to not do more for the mastectomy patient by comparison.

    Kenju: Hope your dtr-in-law's mother is doing well. I just think it's ridiculous that Congress has to legislate a matter like this in the first place, but wish it had been done sooner so her mother could benefit.

  8. Joared, I understand your loss and your anger at the "system." One of my dearest friends was taken by breast cancer over three years ago and every day I miss her. It will take all our voices shouting for change to make it happen. Thanks so much for this post.

  9. suzz: Yes, we must make our voices heard. I just learned a day ago after writing this piece, an 80+ yr old in-law has joined these breast cancer numbers.