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4 People Living With HIV/AIDS on Why Bedside Manners Matter

Stories of Kindness, Compassion and Crossing the Line

Summer 2013

Charles Dawson

Charles Dawson, 62

Charlottetown, PEI
Retired
HIV+ since: 1995

Last November I had to go to the hospital. The ambulance picked me up and when I got in, the paramedic's first question was: "How did you contract HIV?" I was in a lot of pain at the time and it caught me by surprise. I just looked him and said: "I don't think it's any of your business, is it?" He was taken aback. The other paramedic called him up to the front and about two minutes later he came back and apologized.

Later that night at the hospital, the nurse who signed me in asked me the same question. It was the first thing she asked. I gave her the same answer. She said that sometimes people "like to share" and I told her that it's up to me to share. The next day I talked to the head nurse about it. I told her that it struck me as kind of comical but some people might be bothered by it. The nurses I had after that were all fantastic.

In another incident, about four years ago, I was in the hospital because I was having a pancreatitis attack -- they're not a lot of fun, let me tell you. The doctor, who happened to be a woman, leaned over and said to me: "Well, that's what happens when you have homosexual sex." I laughed. I couldn't believe she said it! I thought, if you don't know better by now, lady, I can't be bothered. Getting mad wasn't going to do me any good.

I should add though that for every one of those, there have been 10 other healthcare providers who have been fantastic.

Message to healthcare providers: Don't judge people. These healthcare providers judged me before they knew my name. Put your prejudice aside, be professional and treat people with respect.


Francine Kelly

Francine Kelly, 38

Kitchener, Ontario
Practical support worker, ACCKWA (The AIDS Committee of Cambridge, Kitchener, Waterloo and Area)
HIV+ since: 2001

After my hysterectomy, I developed an abscess that led to my being admitted to the hospital. Due to health complications I was eventually brought to the ICU, where a resident treated me very poorly. I felt that I was neglected and discriminated against by this resident.

When I was transferred to a regular hospital room, this resident disclosed my serostatus to friends of mine who were visiting me and didn't know that I was positive. I didn't want them to know. The room was full of people and he came in and started talking about my serostatus, asking me how long I've been on certain medications and is it because of HIV that I'm taking these medications. I replied "yes" and then I just started crying. My daughter started crying, too.

There were four ladies in my hospital room that day. Two of them left the room and I've lost them as friends. The other two ladies, who had been coming to see me in the hospital on a daily basis, said that whatever they heard in the room would stay in the room, but since that day they have drifted.

I told the nurse what had happened and she told the resident's supervisor. Several people from the hospital came to talk to me about it, including a social worker. The resident came to my room, too, crying. He had no knowledge about what kind of impact his words would have on me. But now he realized that he had breached confidentiality. He said he was sorry and that he had learned a lesson. As a result of what he did, quite a few of my friends have drifted away with no explanation, and now I have to start working on how to deal with rejection and discrimination, as I have been excluded from social gatherings and church get-togethers.

Message to healthcare providers: Educate residents on the importance of privacy and confidentiality. And inform them about HIV and the impact it has on a person's life.


Doug McColeman

Doug McColeman, 50

Montreal
Canadian co-chair of GNP+NA (Global Network of People Living with HIV, North America)
HIV+ since: 1985

In 2010, I had a mini stroke. There were no problems after that until August 2012. Based on the results of blood tests taken during a routine medical appointment, I was told to report to the Royal Victoria Hospital emergency room. It turns out that I had had a cardiac event. I spent a week in the ER while they tried to identify what had happened.

The Royal Vic is a teaching hospital, so troops of med students led by their professors arrived at my bedside several times a day. The profs presented me and invited their students to ask questions. On more than one occasion, I was asked: "How did you become infected with HIV?" At first I was speechless and then: "Well, I dunno. I'm not from an endemic country, nor am I an injection drug user, ex-prisoner or sex worker. I am gay, however, so my best guess would be sex. And how did you become infected with the flu the last time you had it?" The profs and some informed classmates were quick to straighten them out, though at times I felt like an extra-terrestrial being studied.

During this week of constant tests, I was denied food fairly often while I waited to be taken for these tests (which often ran behind schedule). Luckily, a nurse noticed this and told the support staff to ignore the orders given to them and to bring me food, with the understanding that I wouldn't eat it until after my test. I started hiding the "unauthorized" food they brought me, to ensure they didn't take it away while I was gone. When my guardian angel nurse caught me doing this, she laughed and said it wasn't a bad idea. She also made sure to check that I had enough HIV meds and that I didn't forget to take them.

Message to healthcare providers: Teach med students that when a person with HIV is successfully treated, there is no risk to those providing us with healthcare services. A safe, nonjudgmental and collaborative environment in which people can disclose their serostatus is essential.


Romari

Romari, 58

Victoria, BC
Retired
HIV+ since: 1986

I remember one distressing encounter with a doctor who was filling in for my GP. I was concerned about some white patches in my mouth and wondered whether they might be related to antibiotic eye drops I'd been using for an infection. Within only a few minutes of discussion and after looking into my mouth, the doctor asked if I had any other health conditions. Upon answering that I was HIV positive, she very angrily asked: "Why didn't you tell me that when I walked into the room?" When I told her that I expected she would know this from my file, she said, "Don't waste a doctor's time by not telling them right away! Of course, you have thrush!"

The next time I saw my eye specialist, I asked if the antibiotic drops he had prescribed could have caused my symptoms. He said "absolutely." He had other patients, not HIV positive, who had also developed thrush-like symptoms from the medicine.

Over the years, I've experienced a wide range of side effects from my meds. Whenever I expressed to my specialist how miserable I was, he'd say something to the effect of "you just have to deal with it." About six years ago, when I was at death's door, my care was turned over to the Immunodeficiency Clinic at St. Paul's in Vancouver. I was resistant to many of the antiretroviral drugs, and a new medication, not in full release at the time, was requested as part of a salvage treatment.

Having been told that I would probably go through a month of hell with side effects, initially I refused the drug. However, my son pleaded with me to please try this one last thing, so I did.

It turned out to be more like two months of hell. During this difficult time, I consistently received calls from the St. Paul's team, checking in on me. They were so understanding, supportive and encouraging that I continued taking the therapy while managing the side effects with their helpful suggestions. Had it not been for their amazing support, I never would have made it through that point in my life.

I now travel to St. Paul's every three months for my care. My health, both physically and emotionally, is the best it has been since my diagnosis. I credit the best in bedside manners for making the critical difference between my living or dying.

Message to healthcare providers: You are not only there to diagnose and prescribe, but to listen to our concerns, too. No matter how insignificant some of these may seem, they are important to our overall feelings of self-worth. The more we feel cared for and validated, the more we are healed.




This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
 

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