by Sara Billings, RN

I believe knowledge is power. There is no more complex topic in the healthcare debate than end-of-life care. I have been a Registered Nurse for thirty years. I deal with this every day. All of us will confront this issue eventually. When it’s your turn, I hope the medical profession will guide you to the best options for you and your family.

Often I see patients who have prepared living wills and think a document will protect them. This is frequently not the case. Often these documents are not specific enough to guide family members. Occasionally they are completely ignored.

Imagine you’re in a nursing home. You no longer know your family. Chronic illnesses ravage your body and render you bedbound. Your life becomes an endless series of hospitalizations that only benefit your providers. Does your living will advise your family to stop treatment? Do they step in only if you end up on life support? Would you choose to live like this for years until you finally succumb?

Perhaps this is why nearly 70% of ICU beds are filled with “Do Not Resuscitate” patients. I have seen these patients on life support, on dialysis machines and receiving chemotherapy. What are we doing? In the last 2 years I have interviewed dozens of patients for my book, not one of them chose this course.

When you create a living will, you think that you have made your wishes known and that you are protected. Were you advised that “DNR” orders aren’t honored in operating rooms? Did you know that if a distant family member intervenes, your doctors, fearing liability, will violate your wishes?

There is much to debate on the end-of-life topic, but let’s begin with an honest discussion of how the system works. The crisis in healthcare is about money. End of life care consumes 25% of the Medicare budget, in many cases on futile care. Yet billable procedures are performed on patients that just delay the inevitable and prolong suffering. Each time a treatment is offered someone should ask: Will this procedure improve the quality of  life?

Recently a 92-year old woman entered a Wisconsin Hospital with a heart attack. She had bypass surgery and a pacemaker implanted. Shortly thereafter, she died in a nursing home.  If a doctor had fully counseled this family on the likely outcome and asked them for a $250,000 check to cover her care, they might have said, “Let’s keep mom comfortable.”

Because it was Medicare’s money, she endured high risk surgery. It did not improve the quality of her life, ease her suffering or comfort the family. But everyone: the hospital, the device company, the pharmaceuticals and the physician got paid. It’s not that these people are wrong, it’s that the system defaults toward treatment rather than compassion. Just because we can do a procedure, doesn’t mean we should.

The idea that government will dictate your end-of-life care is misleading. Medicare rarely denies procedures, while private insurance companies do it everyday. Physicians need greater reimbursement for their time in presenting difficult options. They need to ask themselves, what care they would offer their own parents. Medicare incentivized procedures and doctors often choose the course of least resistance. We shouldn’t blame them. We should change the system to encourage care over procedures.

I’ve seen enough suffering for a lifetime. I am grateful for the public debate. It takes real courage to counsel dying patients. I’ve done this for hundreds of heart failure patients and for my own father as well.

My dad suffered complications of diabetes: blindness, cardiac problems and amputations. His surgical site, covered in gangrene would never heal. His doctors continued to work on him planning more surgery, dialysis, and tube feeding. When none of the MDs presented his options, I did. When I mentioned the nursing home, he stopped me. “How long will I last?” he asked.  I told him that his future would include many hospitalizations, but the quality of his life would never improve. He made an informed decision. We stopped all treatment, including antibiotics for infection. He died peacefully 6 weeks later. One of the doctors, shocked by our decision asked, ‘How could you do this to your father?” I responded, “Because I love him that much.”

These are challenging times in healthcare, but with compassion and honesty, we can lead our way out of this mess. Fear and greed in healthcare are what need reforming. Scare tactics about rationing care and having the government make your decisions do not help in educating the public on the true issues on end-of-life care.

Sara Billings is a nurse.

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