Hospitals: What Every Patient Needs to Know 

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. 

The Foothills Hospital in Calgary is one of Canada’s largest medical facilities.

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.

If These Walls Could Talk

Women in southern Alberta who are diagnosed with gynecologic cancer become patients at the Tom Baker Cancer Centre and are treated by the gynecologic oncologists there. However, when surgery is required we become patients on Unit 42 B, located in the adjacent Foothills Hospital building. I first enter the unit like almost all of us do, I’m wheeled in on a gurney following major abdominal surgery that has just been performed by one of western Canada’s top pelvic cancer surgeons. It’s the evening of December 13, 2011, and I can vaguely remember being transferred to a bed in a darkened room, beside me is one other patient. Outside the sun has already disappeared, and as I drift in and out of consciousness I visualize the rush hour traffic—thousands of people racing home for dinner, perhaps some rushing to the nearest mall for yet another round of Christmas shopping.

The first night I struggle with some post-operative vertigo and I can hardly focus each time I open my eyes. The room gradually stops spinning as the dawn approaches, meanwhile morphine dulls my pain and I reach down once or twice to feel a large compression bandage covering my abdomen. At first, I mistake the female resident who comes to examine me on rounds in the morning for one of the nurses. I don’t yet realize that residents do most of the rounds on the Foothills cancer wards and report back to the oncologists and surgeons. The other morning routine that soon becomes engrained in me is having my blood drawn, the hospital lab technicians regularly make their rounds of the unit at five or six in the morning. 

So, what is the worst thing about being on Unit 42 –aside from being sick or having cancer of course? A number of things: the helplessness; the feeling of anonymity; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness. I watch as the occasional short-term stay patient is relegated to the hallway due to the unavailability of rooms. It’s a reminder to me how drastically the situation for patients and their families has changed in recent years. Once hospitals were where you stayed when you were too sick to return home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

In hindsight, I admire the nurses who work on Unit 42— I remain grateful for the ones who went out of their way to make me more comfortable, especially those who took a couple of extra minutes to offer me some needed words of encouragement. In general, the staff does their best to provide first-rate care, even on an overcrowded unit in what is unmistakably a vintage 1960s building.

I can still visualize myself under their care and the thoughts racing through my mind. It’s only the second time in my life that I’ve been hospitalized, and the previous time it wasn’t on a large oncology unit. This time my situation seems more unbearable to me, I feel somehow traumatized. Being on a cancer unit shakes your illusions of immortality. It robs you of the sense of invincibility and innocence that once protected you. I’ve never directly experienced such an atmosphere—one filled with hope, fear, anguish and despair. There are times during my stay when I think there should be tears oozing out of the drab, greyish walls that I have surrounding me.

LIke many of the other patients my surgery has been fairly extensive, it has ultimately involved a small bowel resection as well as the removal of my appendix and omentum. Time creeps slowly as my condition gradually improves. Due to some unexpected complications, it takes until December 24 for the oncologists to finally agree that I am well enough to be discharged. During the course of my stay I’ve required several blood transfusions, numerous tests and scans and too many pain and nausea medications for me to keep track of. I am so incredibly anxious to go home that I’m already changing into my clothes when my mom and brother appear in the door of my room. When I leave the building through the busy lobby on Christmas Eve, I fear that psychologically I will never actually leave behind the experience of being a patient on Unit 42. I sense that it will influence the remainder of my life.

Hospitals: Are They Still Places for the Sick to Get Well?

I suppose I’m incredibly lucky, having never been admitted to a hospital as an overnight patient until a few years ago. Inevitably like many cancer survivors I’ve undergone an unhappy transformation, I’ve been transformed from a hospital newbie into an experienced pro. Now that I’ve completed active treatment for ovarian and uterine cancer, I can boast approximately 70 days of my life spent looking at the world from a hospital bed. It’s no wonder that I was almost brought to tears recently while reading an article by André Picard, the Globe and Mail’s public health reporter. Picard nailed it perfectly with his recent opinion piece Taking patient-centred health care from rhetoric to reality. Here is an excerpt:

“So, what do patients dislike about being in the health system – aside from being sick, of course? A number of things: the helplessness; the feeling of anonymity; the discontinuity of care; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness.”

This epitomizes my experience as a cancer patient in so many ways and it also hints at what I believe are the limitations of most Canadian hospitals.

 

What Hospitals Are Not

During my cancer surgeries I often felt an urgent need to leave the hospital and go home, I never felt relaxed or like I could take my time to heal. These days, it may be easier to define hospitals by what they are not. They are not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense. My hospital treatment was primarily covered by Alberta’s universal health insurance, but I needed my personal Blue Cross insurance plan as well. Through it all I was aware that hospital beds in Alberta cost around $1000 per day and that those beds are in limited supply.

I watched as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. It was a reminder of how drastically the situation for patients and their families has changed in the past couple of decades. Once hospitals were where you stayed when you were too sick to survive at home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

Foothills_Hosp

The Foothills Hospital in Calgary is one of Canada’s largest medical facilities.

 

Turn Down the Noise

Like overcrowding the noise level in most hospitals has grown considerably worse over the past several decades. Dr. Brian Goldman recently discussed this topic in a blog post titled Hospitals bring down ‘da noise. Since 1960, the average daytime noise level in hospitals has gone up 200 per cent. Over the same period, the noise level at night has gone up 400 per cent. The World Health Organization says that for optimal health, the noise level in a patient’s room should be no higher than 35 decibels during the day, and 30 decibels at night. That’s the level of quiet conversation. In spite of these guidelines a 2012 study by researchers at The Ottawa Hospital found that the noise level on one unit averaged 76 decibels, that’s the noise level of a vacuum cleaner.

My personal experience gives an even more graphic example. At one point I had the misfortune of being hospitalized during some construction on the gynecologic oncology unit. Many staff members were apologetic and upset by the constant racket that we all had to endure. There were times when it sounded like a jackhammer and the noise levels had to be over 100 decibels. I believe that these circumstances were detrimental to my health and curtailed my ability to rest or heal properly. Actually, several studies have confirmed that excessive noise or disturbed sleep affects the immune system and delays recovery from major surgery.

 

Hello My Name Is

The medical professionals that I’ve encountered have all been competent, but what is often lacking is a sense that I’m a unique human being and not just a numbered chart or an illness to be discussed. British doctor Kate Granger recently passed away from cancer, but before she died she drew global attention to the impersonal care that patients in hospitals often receive. When Granger entered the hospital, her greatest anguish came from the fact that she was not treated as a person, but as an object on which tasks were performed. “I just couldn’t believe the impersonal nature of care, and how people seemed to be hiding behind their anonymity,” she recalled. Dr. Granger noted that, when people introduced themselves, it was comforting and made her feel safer and more like a person than an illness.

kate_Granger

Dr. Kate Granger left an important legacy.

While facing her own terminal cancer, Granger launched a spontaneous “Hello my name is” campaign urging health professionals to introduce themselves to patients. More than 400,000 staffers with the National Health Service in England have embraced the philosophy, and there are offshoots in Australia, France, Germany, Italy, the United States and Canada. Meanwhile the campaign is still gaining momentum on social media, the hashtag #hellomynameis has been used more than one billion times.