You’ve just been told you have a terminal illness. You’re terrified and desperate for someone, anyone, to hug you and tell you it’s going to be okay. Instead, you are put into isolation, your meals are left outside your hospital room door and health-care professionals only touch you wearing full isolation gear when they enter your room. Impossible to imagine, but if you had been diagnosed with AIDS, this would have been a likely scenario less than two decades ago.
If you were very lucky, you would have been transferred to Casey House (Toronto), where Tracey Human would have been waiting to give you a hug and help you live out the last days of your life with dignity – maybe even a laugh.
Human recalls: “Eighteen years ago, when I first started at Casey House, when our clients came off the ambulance the attendants would be in full SARS gear. The first ungloved hands that our clients felt were our nurses’ so we made sure we were waiting when they were wheeled off and the first sign of their skin we saw, we touched because we knew how isolated they had been. When we finally saw their faces, they were in tears because they hadn’t been touched in months.”
In 1988, Casey House opened as a hospice for people with HIV/AIDS when no other hospice for this population existed in the world. At the time, Casey House was a place people went to die. Today, Casey House is a world-renowned facility that provides supportive, respite, palliative and end-of-life care to people infected and affected by HIV/AIDS in both residential and community programs. Then, no patients were ever discharged. Now, 80 per cent of people who are admitted to Casey House are discharged.
With advancements in treatments for HIV/AIDS, people are living longer lives, necessitating the need for nurses who specialize in HIV/AIDS care. Many shun this type of nursing because of the multiple stresses and stigma associated with this disease. For HIV/AIDS nurses Tracey Human, Karina Wulf, (both are nurses at Casey House) and Brenda Done (St. Joseph’s Healthcare London), it is the most exciting, challenging and rewarding position a nurse could hope for.
Wulf explains: “The one thing about our clients is that they’re all experts. I have learned so much from listening to them and watching them overcome the odds over and over again.” For Human, the most rewarding aspect is when she has delivered care and made a difference: “When I’ve seen someone go from the bottom depths of despair to living again or when I’ve been given the honour of holding someone when they die and they’re terrified but they feel safe because I am there.” Both are quick to add that palliative care is now only a part of the care they provide and that while it is hard, having the privilege of being with their clients when they pass away and sharing such an intimate experience with them truly is a gift.
As with every nursing specialty, this too, has its challenges. One major challenge is the complexity of the disease. “It is a disease like no other, it can change so fast and affect every system in the body,” says Done. “There are new treatments all the time so we are constantly educating ourselves.” Done and Wulf are two of only 20 AIDS Certified Registered Nurses (ACRNs) in Canada. The ACRN is a credential that is recognized in Canada but not available here. Nurses can take the 1/2 day comprehensive test online and those who earn accreditation have to recertify every four years.
Perhaps the biggest and most unique challenge in HIV/AIDS nursing is the stigma associated with the disease. “The stigma is partly built on people making moral judgments and making assumptions that people have acquired their HIV through homosexual activity, injection drug use or by being sexually promiscuous. These misperceptions fuel the stigma when in reality, no one is immune to HIV.”
Sadly, all three HIV/AIDS Nurses have a story about one of their clients who has been mistreated or ostracized because of his/her diagnosis – from not being able to find a family doctor or dentist, to being completely shunned in their community. Even as nurses caring for patients with HIV/AIDS, they too experience the stigma – they refer to it as guilt by association – but admit it has gotten much better over the years.
While the stigma experienced by HIV/AIDS nurses has declined, the stigma and discrimination their clients experience has not. They often report feeling discriminated against and ostracized when trying to navigate the health-care system. So these HIV/AIDS nurses spend a lot of time educating health-care professionals through seminars and workshops about HIV/AIDS to help decrease some of the stigma and reluctance to treat HIV/AIDS patients.
“The stigma is not blatant like it used it to be, but it’s out there, people are just quiet about it. We are not anywhere near where we should be in this day and age, after 25 years of living with this disease,” says Human.
Joan Lesmond, Director of Clinical Programs and Chief Nursing Officer at Casey House Hospice, and Immediate Past President of the Registered Nurses Association of Ontario agrees: “We got a call here at Casey House the other day from a health-care facility who had a person with HIV/AIDS use one of their phones. They wanted to know what they should do, and if they should make sure nobody else used the phone until it was cleaned.”
While it seems mind boggling that there are still health-care professionals who don’t know how the disease can be transmitted, Done is not surprised. “Every health-care professional needs to have a general knowledge about the disease because that would go worlds in decreasing the stigma and discrimination.”
Part of the reluctance of health-care professionals comes from the stigma associated with the disease, part of it from fears about personal safety and part of it is that these are challenging, time consuming patients. Wulf offers advice for health-care professionals who are treating a patient with HIV/AIDS: “Every patient should be treated with compassion, but our clients, because of the stigma, need that more than others.” “Sensitivity is number one.” Human adds: “Be aware of the pain they live with every day. You are not at risk of getting sick so don’t be afraid to touch them – it’s so important. We are not here to sit in judgment; we are here to provide care to the best of our ability.”
There are currently 58,000 people living with HIV/AIDS in Canada, and in spite of public awareness campaigns and safe sex programs, 11 people are infected with HIV every day. Realistically, it appears that HIV/AIDS is going to be with us for some time to come. We are going to continue to need nurses to care for this population so this is a specialty that will continue to grow.
Lesmond acknowledges that the specialty has come a very long way but admits that it still has a long way to go: “I would really like to send the message that people with HIV/AIDS are people too, they are human beings and they need and deserve the care in caring. As we continue to nurse them and deliver exceptional care, we need to remember that it could be our mother or brother or friend who is diagnosed so let’s treat these individuals with respect and maybe that will break down this level of stigma that still exists.”