I recently met with a patient who was diagnosed with throat cancer and metastases to his lungs. He was on a feeding tube and his weight was down to 109 pounds. A surgical procedure that he underwent this past June in an attempt to remove the cancer had permanently robbed him of his speech and his ability to ever eat or taste food again. He spent two months after surgery in a skilled nursing facility sharing a room with a stranger. After 2½ months of being away from his home, he was discharged.
His family contacted my office in September due to his rapid decline and because he had no direction or conversation with the multitude of healthcare providers that he had encountered over the course of his diagnosis, surgery, hospitalization and skilled nursing admissions. Unfortunately, he is just one of thousands of patients who yearly undergo non-beneficial treatments and are left with the physical and emotional scars. What little time he had left, he was now denied the joy of simple things such as tasting his favorite foods.
When I first met this patient whom I will refer to as “Joe” to maintain his privacy, he wrote on a piece of paper, “quality of life.” I wonder how many times he verbalized those words to the healthcare providers he trusted before he died on New Year’s Eve.
In fact, an article published in the Journal of American Medical Association (JAMA) Internal Medicine concluded: “The majority of participants overestimated intervention benefit and underestimated harm. Clinicians should discuss accurate and balanced information about intervention benefits and harms with patients, providing the opportunity to develop realistic expectations and make informed decisions.”
The Journal of Palliative Medicine reports: “Seventy-eight percent of patients received at least one form of intensive EOL [end-of-life] care, including 75 percent of those who preferred comfort measures at last documentation.”
As a practicing nurse, I know these studies are accurate because I have seen terminally ill patients die in hospital ICUs. These patients were subjected to non-beneficial exams and treatments, which resulted in increased pain, anxiety and needlessly prolonged suffering. I know many other nurses who feel the same way.
In response to this systemic failure, Compassion & Choices, which advocates for patients to have the full range of healthcare options, introduced a new initiative last November called “Truth in Treatment.” The goal is to bring awareness to the growing number of patients with life-threatening illnesses who are receiving non-beneficial treatments. The program is aimed at moving away from a “one size fits all” approach to healthcare and empowering individuals through educational tools, such as a “Diagnosis Decoder,” to help them build trusting, candid relationships with their doctors, ask discerning questions, and use the answers to make fully informed treatment decisions.
The Centers for Medicare and Medicaid Services (CMS) has also recognized the importance of end-of-life care decisions. In an effort to facilitate end-of-life care discussions with patients, CMS is now reimbursing physicians to participate in these discussions. While Medicare now reimburses doctors for conducting these discussions, a survey commissioned by the John A. Hartford Foundation, the California Health Care Foundation, and Cambia Health Foundation concluded: “Less than one-third (29 percent) [of physicians] report having had any formal training specifically on talking with patients and their families about end-of-life care.”
The responsibility of Truth in Treatment starts with all teaching medical institutions. Without incorporating end-of-life care discussions into the curriculum and limiting physician’s exposure to only a “curative” approach to healthcare, they are doing a disservice to the doctors and the patients in which he/she will be entrusted. Without education and understanding, the cycle of non-beneficial treatment will continue and it is the patient and family who will suffer.
Death is inevitable. Truth is a right. Knowledge is power.
Wendy K. Smith is a registered nurse in Richland, Washington who specializes in treating patients with life-shortening and terminal diseases caused by exposure to toxic materials in the workplace.