What is it like to be hospitalized, I mean genuinely hospitalized for weeks on end until a tiny antiseptic room with curtains around the bed gradually becomes your home? For most of my life I had no real idea, but an awareness of severe illness requiring prolonged hospitalization can be one of the terrible consequences of becoming a cancer patient. In this blog post I’ll provide tips to cope with hospitalization and to endure the experience of being in a medical institution, specifically when undergoing major surgery.
First: Don’t let them diminish your identity.
The health care system and the medical establishment are especially challenging—we are made to feel anonymous and are often reduced to nothing more than numbers or charts, it hurts that we are being robbed of our individualism. I was personally made to feel an acute lack of identity when some nurses and hospital workers didn’t call me by my correct or preferred name. Their error would stem from the fact that I’ve always been called by my legal middle name, and not my first like most people.
Loss of identity is the heart-breaking reality for many cancer patients as we find ourselves navigating the hospital or other medical institutions. We feel ourselves diminished and our individual worth slipping away. As patients much of our privacy and control is essentially gone, on a hospital unit we must wake when we are told, wear what we are told and eat what we are told. Often, we don’t have the luxury of a private room, we must share a room with whomever, they say we have to.
In his classic New York Times bestseller Being Mortal: Medicine and What Matters in the End, Atul Gawande examines identity and how it’s often diminished for residents of hospitals and nursing homes. The author, a medical doctor, uses case studies and also discusses the reality of chronic illness and ageing within his own family. Gawande writes that the battle of being mortal is the battle to maintain the integrity of one’s own life—to avoid being so diminished or dispirited or subjugated that who you are becomes disconnected from who you were or what you want to be.
Second: You deserve compassion and respect.
The best doctors or nurses make time to connect with their patients, and they genuinely care about what you are thinking and feeling. For example, if their patient is feeling cold, they arrange for a blanket, if their patient is thirsty, they get the individual some water. Without addressing these underlying human needs, impressive hospital designs and state-of-the-art equipment are useless. After a while it’s only our humanness that matters, the luxurious seating and lighting become insignificant compared with medical staff who consistently treat those under their care with compassion and dignity.
I remember an incident that occurred at one of the lowest points during my rigorous cancer treatment. It was the middle of the night and I’d already spent several grueling hours in the emergency room when I was finally sent for a CT scan. The radiologist performing the scan was very empathetic toward me. He immediately noticed that I appeared cold and nauseous, so he offered me a blanket as well as a small basin just in case I was sick. Next, he saw that my IV had been put in poorly by someone in the ER and that it required redoing. However, instead of replacing my IV before the scan, he explained that he didn’t want to put me through the unpleasant procedure right away. We ultimately used the imperfect IV line to administer the contrast solution for the scan and it held out unit after we were finished.
Third: Remember that hospitals can be dangerous.
A recent study conducted by the Canadian Patient Safety Institute confirmed how prevalent accidents and medical errors are in hospitals. One in 10 Canadians have personally experienced a Patient Safety Incident (PSI), with many more saying a loved one has. Not surprisingly caregivers and those with a chronic illness were significantly more likely to have experienced a PSI, both personally and having a family member who experienced one. According to the study, misdiagnosis, falls, infections and mistakes during treatment were the most common types of PSIs. Meanwhile, those who had suffered a Patient Safety Incident most frequently cited distracted or overworked healthcare providers as contributing factors that led to the incident.
Medicine as it is practiced now is so complex and time is so limited to healthcare providers that, even in the best hospitals, certain aspects of patient care can be overlooked or misconstrued. As a patient I quickly realized that I must be an advocate or have an advocate. Sometimes out of fear, pain or confusion I was unable to be my own advocate. This is why I believe it’s almost always essential to have a family member or loved one visiting you regularly and advocating on your behalf. However, the decision about which and how many visitors is still up to you. Remember it’s not your job to entertain visitors. You should encourage friends and family who understand your needs, and discourage those visitors who may not be completely in tune with you.