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Medical safeguarding of vulnerable people leaves us feeling vulnerable too. In November, the sister of Good Things in Life host Genia Stephen was admitted to the intensive care unit and Genia has been supporting her in the hospital ever since. In this podcast, Genia reflects on her sister’s experience of being a hospital patient and her own role as a medical advocate. It’s just as important now as it has always been to make sure we remain strong advocates for our loved ones with disabilities. Medical safeguarding of vulnerable hospital patients can make the difference between life and death.
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Welcome to The Good Things In Life podcast. I’m Genia Stephen, if this is the first episode of the podcast that you’re listening to, I don’t know. You might want to go back and listen to a few other episodes. This is a little unusual. This podcast is just me and I’m reflecting on something that’s currently happening for my sister. So if you don’t know me or anything about me,
I have a younger sister that has a disability, and I have a son that has disabilities. And so this is unusual in that I’m not interviewing anyone and I’m just reflecting. So this month, March in Inclusion Academy, which is The Good Things In Life Membership, we’re talking about medical safeguarding of people with disabilities in the hospital system specifically. And it’s important at any time.
It’s particularly important when we’re in the middle of a global pandemic and our usual ability to be with people and support people is even more affected as, as people’s access to care. So we’ll be, I’ll be teaching a workshop on medical safeguarding for Inclusion Academy members. And if that’s something you’re interested in, you can check out Inclusion Academy by going to goodthingsinlife.org/join
So let me get into it. What’s happening right now as I record this, which is actually on New Year’s Eve 2020 is that my sister is currently living in the ICU. She got really sick a couple of months ago, and I have been staying with her who spent the first five and a half weeks, just exclusively me living in the hospital, not going home because of the COVID safety precautions
And now we’re able to have a couple of other people cycle in to support her for blocks of time. And so this is the first opportunity that I have had to spend a few days at home and start processing and thinking about what it means for my sister to be in the hospital. And the rest of this podcast episode is my reflection.
So here we go. I’ve titled this The Hands of 200 Strangers On Your Body. A few weeks ago, you were living in your own home and receive support from a small number of people who know you well, family, and some paid supporters. Suddenly you’re living in the ICU, unable to speak or move. They say that you’ll be here for a year.
there are more than 200 nurses here in the intensive care unit. They’re not able to provide you with any continuity. The hands of 200 strangers will touch your body this year. Every few minutes, someone walks into this new home of yours, a glass fronted room at the end of a hall, many don’t greet you. When you sleep only some lower their voices as they speak to each other, or to me.
Only some of those who do lower your lower their voices, or speak to you. Look you in the eyes and speak to you. Like they mean it. I think some people are trying to be unobtrusive at first. You gazed at them with interest, but less so now that you’re more used to being ignored. Only I seem to be truly bothered by this necessary, but infuriating, lack of privacy or control.
A nursing student enters, it’s dark and you are finally asleep. She flips on the bright lights above your head and tells you in a loud voice that she’s going to do her assessment now. The assessment that she needs to do in order to learn, not one that you need to keep you safe and well, I firmly decline on your behalf, but it’s too late.
You’re awake, uncomfortable, and you have to begin yet. Again, the healing act of falling into rest. Every two hours, two people enter and notify you that they will now move your body. Not the same two people, every two hours, of course, they pull the curtain and they are kind, but after their initial announcement, few, actually tell you what to expect step by step.
At one point, I gasped audibly shocked as a care assistant, casually thrusts, a wet cloth between your legs, without warning. What she looks up at me, surprised people, ask you stupid questions, meaningless questions you refuse to answer. And sometimes I know you’re confused about how to answer.
Do you have pain? They ask. Yes, always. Don’t you know that already? Why do you ask, can you finally fix it blink two times for yes and three times for no. Do you know where you are? They report that you are unresponsive, unwilling to comply with assessments. They assert that this means that you cannot be assessed. I tell them that you’re a 40 year old woman with an intellectual disability.
Who’s been asked her whole life to do stupid things for other people’s assessments. And decades ago, you stopped being willing to participate in your own denigration. I tell them that they are conducting assessments that do not take your disability, life experiences and previous traumas into consideration, nor are they listening to what you’re communicating. They’re open to my suggestions, but the next person who walks in just as the same thing.
And we go through this cycle over and over again. Though, last night I had met, you did think the assessment was truly funny. Joke. The ruggedly handsome nurse, who you very much appreciated, kept trying to convince you to stick out your tongue at him. I mean, clearly he justs you wouldn’t dare be so rude to a nurse. I can see in your eyes, as you look at me.
The first resident before the tests and before they had any clues as to what had caused your sudden health decline or, and before they had any idea of what the treatment options were or your chances of recovery starts her conversation with me by asking what my goals of care are. I’m sorry. I asked, I don’t understand, but I do understand.
This question what are your goals of care? Opens the door to the question of comfort care, no treatment letting you decline, Dr. Wolfensberger called this death making. I’ve seen it many times before. Well, she says the tests are invasive and uncomfortable. You might decide that you don’t want them. You mean the routine lumbar puncture that feels no different than an epidural, and the nerve tests that feels like a tens machine that they use in physiotherapy.
I think we’re okay with that, proceed. Your diagnosis and your treatment are perplexing to the team. Some of the symptoms are consistent, likely because of your disability and you can’t explain what you feel. I’m there and I explained what you’re expressing to the best that I can. I tell them what has happened. I tell them what you were able to do a few weeks ago.
They still seem inclined towards uncertainty. We show them photos. Oh, she could walk and talk and do things just like you said, somehow they seem inclined to see your current health to be more related to your disability than your medical crisis. And I just keep thinking God that I’m here and telling them and showing and interpreting you to them.
And them to you and pushing,and pushing and asking and asking them, watching, watching, always watching it takes time to get to know you, to understand your communication, to know things like your pain tolerance. And what that means for understanding you or the difference between worry, fear and pain in your furrowed brow, or the fact that you will smile at a good looking man, even when worried, afraid, or in pain.
It’s hard for you to discern where the pain is located and impossible for you to communicate that. It takes somebody who knows you well to notice that your right leg is flopping out in a painful way, that isn’t normal for your body and needs to be fixed, repositioned or that your neck is bent in a painful way. That sadly is normal for you.
And it shouldn’t be repositioned. The hands of 200 strangers will touch your body. The social worker keeps reassuring us that the nurses will get to know her over time. But what does that mean? If you’re here for a year and there are 200 nurses, how well and intimately will you be known? How many times will you be misinterpreted, misunderstood.
Your questions,go unanswered your body malpositioned, how will they keep your stories straight? It’s a game of telephone with more than 200 people playing. How will they know your story before you arrived here? How will they know all the very specific to you aspects of your communication and the supports? You need to get your message across. If we are not there with you.
When you were transferred from our small local hospital to the larger center in the city, they wouldn’t let us go with you in the ambulance. When we arrived, they wouldn’t let us in, COVID safety precautions. They say no visitors, but we are not visitors. We are essential disability supports and accommodations. How will you treat her? If you can’t understand her communication and you don’t know her baseline, I asked the charge nurse.
We can keep her safe, the charge nurse said. But how will you keep her safe? If you don’t have someone who can interpret for you and provide information? The doctor and I are confident that we can keep her safe. Who can I speak to, to appeal this decision? I ask up and up and up the late night ranks until finally they agree to let someone in just for the night.
By then your contracted mag is lacking all supports, and they have sedated you with double the dose of one of your medications and another that isn’t even something you take. Not because you needed sedation. It was just a mistake. This is going to delay their assessment for two days. They say it’s very hard to figure out how strong or weak someone is when they’re deeply unconscious. It took me two weeks to get an incorrect indication for admission out of your chart.
It took three weeks before people stopped suggesting that they substitute a generic drug that the hospital stocks, that is known to cause you seizures. With the brand name drug that we brought from home and that works. I review every single medication, not what’s written in the chart, but the actual pills for weeks until the error rate goes down. And I still watch for changes in the pills that come in the room.
It’s a game of telephone and there are more than 200 people in the circle, passing messages from one person to the next. The hands of more than 200 strangers will touch your body this year. And we can’t stop that, but we can make you safer, help those strangers’ hands to understand how to help you, minimize your discomfort, interpret for you. It’s not easy staying in the hospital.
It’s not easy to be grateful. And to know that the medical staff are providing high quality care and they are doing their best in their good people. But also reconcile that with the number of mistakes, the errors, the misinterpretation, it’s hard, but it makes a difference. And while there will be 200 or the hands of 200 strangers on their body, on your body this year, there will also be one of us with you.
Who love you and who can keep you safe. Well, thank you for bearing with me while I reflect and maybe unload just a little bit around our recent experiences, but at the time you listened to this, you know, it’s going to be a couple of couple of months and my sister will likely still be in the intensive care unit.
And we will still be providing this around the clock support for her. And I look forward to having conversations about medical safeguarding. As I said, we’re going to be covering, we’re going to be, I’m going to be providing a workshop to Inclusion Academy members or about medical safeguarding in March. And if this is a topic that is important for you, then I invite you to join us.
You can find the inclusion Academy information at goodthingsinlife.org/join. And I’d love to hear about your experiences with medical safeguarding. So email me, ge[email protected] Thanks very much. Take care, stay safe.