Two weeks ago, at a local hospital, I taught a two-hour continuing education course about advance directives for an audience of hospital administrators, nurses, and social workers. “Advance directives” are documents such as the Living Will, the Do Not Resuscitate Order (DNR), and the Health Care Power of Attorney. A primary goal for people who sign these forms is to avoid unwanted resuscitation and other “heroic measures” when there is no hope of recovery and returning to an enjoyable life.
Often, older adults have told me stories of doctors and/or hospital staff who ignored the refusal of life-prolonging care wishes of a now-deceased loved one. They tell me that they had insisted that their loved one did not want life-prolonging treatment, but nonetheless a doctor ordered feeding tubes, ventilators, and other life-prolonging measures. I have wondered—is this fear of wrongful resuscitation real or imagined? The short answer appears to be that the fear is real.
Recent studies show a real “lack of regard” for patient’s preferences in life-sustaining treatment decisions by doctors and hospital staff (National Quality Forum: Safe Practices for Better Healthcare 2009 Update).
Another 2008 published study (Pieracci) reviewed life-sustaining treatment decisions that occurred between hospital medical staff and their patients and/or their health care agents under advance directives. The conclusion of the study is frightening. “Despite patients’ wishes, the indiscriminate use of technology and the lack of communication between patients and health care providers have been shown to result in unnecessary pain and suffering for patients.” In addition, the study notes that the medical costs of prolonging a dying patient’s life via artificial ventilation and intensive care often range between $11,000 and $36,000. Another study entitled Support demonstrated that 46% of dying patients received mechanical ventilation in the last three days of their lives. Many of those individuals never wanted to be on a ventilator—yet they were forced by their physician’s decisions to live on in a state of hopeless suffering.
What can you do to prevent “wrongful resuscitation” from happening to you or someone that you love?
- Create a written advance directive such as a Health Care Power of Attorney, Living Will, and/or a Do Not Resuscitate Order (DNR) in appropriate circumstances;
- Insist that your advance directives are placed in all of your medical records and that your physician is well aware of the existence of such documents;
- Have “the talk” with your family and doctor to make sure that everyone is very aware of your feelings regarding life-sustaining treatment in the event there is no hope of recovery. This will allow you to get all of your family members “on the same page”; and
- Choose an “advocate” as your Health Care Power of Attorney and/or surrogate decision maker. That advocate is someone who can look a medical professional in the eye and insist that your wishes be carried out. I recommend that you look through your family and friends and choose someone who can insist that your desire regarding life-prolonging treatment be respected by the medical profession.
It’s important to know that there is substantial legal authority for health care directives to be followed. In fact, it is now considered to be a “sentinel incident” when a hospital performs a wrongful resuscitation. The Center for Medicare and Medicaid Services (CMS) has emphasized that patients have the right to make decisions regarding their long-term health care, and that those decisions should be respected by physicians and hospitals.
In Illinois you can find the statutory Health Care Power of Attorney at http://www.idph.state.il.us/public/books/PwrOf.PDF . If you are not in Illinois, just go to Google and type in your state’s name and the words, “health care power of attorney.”