I have to sacrifice me. Charleston Healthcare Stories

Judy L. Although eighty-two years old and partially paralyzed from a recent stroke, mother fights the idea of dying with each breath.  Her family is grateful that she has such a spirit, allowing us more time with her.

When we sat down to discuss what mother would want with a health care professional, mother was in her ‘I ‘m going to live forever’ mode. But a living will is more complicated than a ‘do you want to live?’ form.  It forced us think about the unthinkable ‘what if’s’ and discuss them openly.  We weren’t pressured or steered by the professional, but felt safe in a hypothetical environment reviewing best and worst case scenarios that might never exist. As we reviewed scenarios, our mother said, “Yes, I’d want that,” and “No, I wouldn’t want that.”  She appointed a daughter for medical custody, if she was incapacitated, who would know her wishes discussed, and now documented. She signed her living will. Living being the crux word of the matter. We didn’t leave that meeting feeling like we’d let our mother sign her life away.  To the contrary, we knew she would be getting the exact treatments she wanted, if she needed them.

Our mother took it a step further and made her funeral arrangements soon after that. She chose her own casket and prepaid for all the details she wanted.  It wasn’t the most comfortable shopping spree we’d experienced with our mother, but it was one of the most significant. Once all loose ends were neatly arranged, we breathed a sigh of relief.  We no longer had the burden of making tough decisions—or as families frequently do—have disagreements on a course of action.  It was a wonderful gift mother gave to her children.

Four years later it was such a comfort, after five hours in a surgery waiting room—not to have to make rash decisions based on the anxiety of the moment.  We didn’t have to question or second guess any of her decisions because those decisions had already been made by her.  And she can change her mind, even in the more restrictive life she leads now.  Her decisions made years earlier saw her through her surgery. Her caregivers respect her current wishes and her living will is always available for changes, should she choose them.

All these decisions were hers, yet she is in a federally run program, Medicaid.  There were no pressures or ‘death panels’ fears. Her worthiness of life has never been challenged or judged based on her condition. I resent the people who go to the suspicious, dark side without ever researching—let alone experiencing what a smart thing it is to plan ahead, as best you can.  Might you change your mind year to year as you grow older?  Yes.  And you are free to make different choices throughout the life of a living will—which is as long as you live. Freedom of choices still exists.

Painting pictures of  feeble old ladies or a sick child facing a panel of judges, American Idol style, is ludicrous. These horror stories and rumors tell you more about the people who started them, than anything about health care changes being offered.

If you have ever checked into an emergency room, hospital or any clinic where you might be sedated, a standard question is, “Do you have a living will?”  Every adult needs one, if only to assure some group’s decision about their life’s worthiness won’t apply to them. (And that group could be your relatives.) If not for yourself, one should have a living will to spare loved ones of the burden of life-and-death decisions on your behalf. Not only do those decisions affect loved ones at that moment when most vulnerable, but differences of opinion can cause strife and life altering rifts in a family.

Many families are afraid to approach the subject of death.  Not only do we not want to think about it, we often go to great lengths to avoid discussions about it.  But since we are all going to die someday, I believe it is smart and considerate to make your own decisions ahead of time when imminent fear is not an issue. Whether you are Medicaid or Medicare or you have a personal, on-call physician through the best insurance plan on earth, a living will is recommended by all medical and care-giving communities. If you are an adult, be an adult by making out your LIVING will, so all the choices will be yours.

Rosa W. worked until 1999 and was insured by her employer until she was forced to quit because of a disability. She is now on Medicaid and has no dental coverage. She has severe dental issues and stresses that it is affecting her life and self-esteem and she cannot afford dental work without insurance.

Tim C. has a 3 ½ year old daughter who has autism. None of her therapies designed to help integrate her into society are covered by his employer based insurance. They are paying 52,000 dollars a year out of pocket for her care. Her diagnosing physician requested both speech therapy and ABA therapy (applied behavioral analysis). The speech therapy costs $320 per week, the ABA therapy approximately $900 per week. The assessment before ABA therapy can start is $2,500, all of which must be paid in advance and out of pocket because his insurance doesn’t cover these doctor recommended therapies. The insurance company told Mr. Carmichael that Autism is an acquired disease and that’s their reasoning for not covering his daughters treatments.

John D. owns a company that converts existing trucks in to hybrids. He cannot afford insurance for his employees which makes it very difficult to retain highly skilled engineers and assembly workers. Not having insurance for his employees makes him unable to stay in competition with larger companies that have the funds to do so.

Joanne J. has a twenty-five year old daughter in medical school at George Washington University who cannot afford health care. Since she is twenty-five years old she can no longer be on her parents plan and they cannot afford private health insurance for her. She is in her second year of medical school and when she enters her third year it is required for all students to have coverage because they will be working in a hospital setting. Because of the rigorous course work of med school she is unable to work. She had a full scholarship for her undergrad education but is now incurring debt from loans she received for medical school.

Kim N. is unable to afford (at all) health insurance as a benefit for her 3 employees (plus 2 owners) due to the exorbitant price quotes they have received.  She is a breast cancer survivor of 4 years and is not eligible for consideration by traditional health insurance companies without ‘significant uprating’.  Her family’s personal health insurance was obtained before her diagnosis and is through National Association of Self Employed.  It carries no coverage for office visits or durable medical equipment (which includes breast prosthetics, mastectomy bras and compression garments) and has very high deductibles and out of pocket requirements.  Her rates were recently increased because of ‘her class and its new rating’.  Her business partner insures herself and family through Blue Cross Blue Shield at significant monthly premiums with very high out of pocket and deductibles, as well. Her business is affected by the current soaring health insurance rates and medical expenses and the increased number of clients who come in without any type of insurance, are underinsured or are on Medicaid (who is pared back their reimbursements).  Without being able to pay, these folks risk going untreated.

Ross H. owns a company that develops software for warehouse management. They have 3 full time employees who are not covered under their employment but through their spouses who work for larger companies. Affordable health care in a small business like Boxcar is far too expensive. They are less likely to hire skilled engineers because they are unable to provide health care to their workers. Employee retention is a key issue. Of the 10 employees who have left boxcar 4 have left the state, proving that high quality workers are leaving the state for better benefits.