Futile Medicine
A Nurse Reveals what your Doctor has not told you or will not tell you about Today's Health Care Issues
by
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It had been a few weeks since I’d last seen Mr. and Mrs. Jones, a typical retired couple, in their cozy Florida mobile home. Mr. Jones had a bad heart and was approaching the end of life. During our first visit, I had been evaluating him for admission to the hospice I was working for. Under Medicare, the agency would be able to cover Mr. Jones’ equipment and cardiac medication, not to mention offer the couple the services of nurses, counselors, volunteers, home health aides, and chaplains to help both of them deal with the "end of life" process. Mr. Jones was too weak and frail to take an active part in any new decisions, but he was already receiving conventional nursing care from a non-hospice home health agency, and Mrs. Jones was hesitant to make any changes without thinking it over.
As this was a very common reaction by family members to hospice care, I handed Mrs. Jones our business card and urged her to call us when she and Mr. Jones were ready.
When we next met, Mrs. Jones was at the front sliding door, visibly upset.
"He had gotten so much worse," she explained, "that I brought him to the hospital. The doctor said there was nothing more he could do, and that we couldn’t stay. I had to bring him home like this, but now I don’t know what to do." On top of all this, no equipment or medications were sent home with him.
With all the confidence and professionalism garnered from twenty years of medical experience, I followed Mrs. Jones into the bedroom to examine her husband. There he lay on a flat single bed, his skin sallow and bluish in color, his eyes rolled back, his mouth agape. He was breathing very irregularly. The few breaths he could take were very irregular, shortened by the pressing of his stomach against his lungs. The now-familiar "death rattle" was audible when he did draw breath.
After taking his blood pressure and pulse, ordering the necessary equipment and medications he would need for comfort (which would end up arriving just as his life would end), I tactfully explained to Mrs. Jones that he likely had only a day or two left. Mrs. Jones, who was elderly and frail herself, denied being advised that the end was near, and so no arrangements had yet been made for services, or for anyone to keep Mrs. Jones company in those last hours. They had no children, and only a few neighbors the couple may have turned to.
Mrs. Jones thanked me for all my help, and bravely waved as I drove away. When my car pulled out of her view, I pulled over...and cried.
My tears were not due to fear or inexperience, but frustration and disappointment. Over and over throughout my career, I’d met patients and families who were trying to understand how things got so bad so quickly, and why the health care system had not been able to cure any and every problem that cropped up.
The reasons for this bewilderment are many. Recent medical advances, an ever-increasing average human lifespan, advertising by insurance and pharmaceutical companies, physicians who encourage or allow patients and their families to become dependent on them for decisions, unrealistic expectations, cultural and financial differences, denial of medical problems, and terminality. I could go on, but you get the point.
I may not be able to change our society, but I can and will give honest and straightforward information about our health care system and human life to help you form more realistic perspectives on our bodies, medical care and life situations.
Some of my information will be a relief. Some will be frustrating, disappointing, and, let’s face it, sad. All of it will be the truth.
I hope and pray that these perspectives may give you empowerment, confidence, and, God willing, comfort.
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About the Book
Since the early 1980’s, our health care options have been influenced less and loss by medical professionals with years of training and ethics, and more and more by accountants and bankers, who usually have very little medical expertise. This new breed of decision-maker is ultimately responsible not to you, but to CEO’s and stockholders. Their bottom, line is the bottom line-making a profit.
Patients and their families have followed physicians’ advice without question for decades, even centuries. Today, however, physicians are very often too busy, sometimes ill-informed, occasionally overconfident, or once in a while scared to tell patients everything they need to know to make fully informed health care decisions. When it comes to health care, what you don’t know has the potential to hurt You.
Professional nurses and nurse practitioners are often trained how to educate patients and their families about health-care alternatives. Many nurses are not only trained to discuss options, but by their nature and nurture are prepared to discuss options for pain management, treatment-outcomes, patients’ response to treatment, family situations, personal wishes, and families’ finances. This knowledge can make the difference between living and existing. If your physician chooses to not fully inform you of your options, even though he or she should, very often your well-trained nurse can.
About the Author
Marie Frances (not her real name), RN, BSN, has 20 years of experience in health care in a variety of settings, including hospitals and nursing homes, as well as in the fields of home care and hospice care. Mrs. Frances has long advocated patients’ responsibilities for planning for their own healthy futures.
Mrs. Frances has taught home health aide courses and continuing education classes to establish and improve the caregiving skills of home health aides, and has been published in Nursing Spectrum magazine. She is also an ongoing participant in the Harvard University Nurses’ Health study.
Mrs. Frances lives in the southern U.S. with her husband and their two daughters.