Coronavirus and Patient Empowerment
By Ilene Corina, BCPA, President, Pulse Center for Patient Safety Education & Advocacy
At a time when the term “coronavirus” is a common everyday word, there is more to it than a disease that is affecting millions of people. When we think of coronavirus we may think of either those who have died and left loved ones behind, those who are sick and may be suffering with new and unusual symptoms, or those who fear getting sick. Most of us are thinking about (or living out) at least one of these.
The coronavirus pandemic has led me to reflect that for almost twenty-five years, this is what we at Pulse CPSEA have been preparing for. It started with telling people to wash their hands. At Pulse, since the beginning we have been promoting handwashing and the importance of reminding caregivers to wash their hands. As difficult as that is, it needs to be done. Now, it’s the hottest topic around the world.
People must stop thinking of medical care as only the healthcare professionals’ responsibility. People — all people — must start becoming better prepared as patients. Covid-19 isn’t the only illness affecting us, but it seems to sneak up fast.
The TakeCHARGE Campaign is off to a great start with people recognizing the importance of completing their advance directives. When we hear of thousands being put on ventilators, sedated and unable to speak, the legal step of choosing a spokesperson in advance take on a new urgency in many people’s minds. Step # 1 of the TakeCHARGE Campaign is to understand and complete your advance directives.
The Campaign is now moving to Step 2 of 5, keeping medical histories and medications lists. But that’s no reason not to complete Step 1 — advance directives — if you haven’t already done it.
Let’s move into Step #2 together. During May 2020 the TakeCHARGE Campaign will focus on keeping a list of your medications and medical history. Is this important? Share why, and how. Your stories and experiences may change the healthcare outcomes for someone else.
We hope you will take this one-minute survey so we can learn what you found out about so far through the TakeCHARGE Campaign.
Called into Action
Abby Briggs from Las Vegas, NV is a sophomore at Hofstra University studying Community Health. She is an intern volunteer at Pulse Center for Patient Safety Education & Advocacy on the TakeCHARGE Campaign. Abby, creator of “Ask Abby” videos for the campaign, interviewed a fellow student who was called upon to be his grandfather’s health surrogate.
“The first step of the TakeCHARGE Campaign focuses on advanced directives. One of the documents that is considered an advanced directive is known as a healthcare proxy, which also may be called a durable power of attorney or a healthcare surrogate. This legal document expresses what kind of medical care you want if you become too ill or injured to express your wishes for yourself. They give you a way to tell your family, friends, and health care professionals what care you want while you can speak, to avoid confusion later on.
“Many young people are unaware of what a proxy is, but one young man, Ralph, came face to face with this reality when his grandfather fell ill with coronavirus and assigned him as his proxy. Ralph is 21 and goes to Hofstra University. He was always very close to his grandpa, spending many nights at his house and playing sports with him as a child.
“Unfortunately, Ralph’s grandfather contracted the coronavirus and passed away earlier this month. When asked about what it was like to serve as a proxy, Ralph explained that, ‘It doesn’t really hit you until you’re in that situation,’ because as his grandfather’s proxy, he had ‘to tell [the doctors] if they should let him die or live.’ In the end, Ralph followed his grandfather’s wishes, stating that ‘He just wanted to go because he was suffering so much.’
“Now more than ever with the coronavirus pandemic, it is important to have a healthcare proxy in place so your wishes can be known. Without having a proxy in place, Ralph’s grandfather’s wishes would not have been known and the doctors would have continued to treat him and keep him alive.”
To learn more about advanced directives and how to assign your own proxy, visit www.takecharge.care
Maia Buchman is a fourth-year undergraduate student at Hofstra University from San Diego, California. She is studying Community Health and Spanish, and wishes to continue her education in Public Health and Health Administration. Maia is an intern working at Pulse Center for Patient Safety Education & Advocacy on The TakeCHARGE Campaign among other projects.
“I had known for a little while about what an advanced directive is, but I didn’t realize how important it is until I learned more about it through the TakeCHARGE Campaign. I asked my friends and siblings if they knew about advanced directives, and I was shocked to find that most of them have never heard of them. On the other hand, my parents knew a lot about them, but they didn’t have any official advanced directives completed. I realized that talking about advanced directives is usually something that people do when they get older in age. However, I know now that it’s just as important to talk about one’s advanced directives at the age of 18 as it is at the age of 50.”
The TakeCHARGE Campaign’s first month step is to “understand and complete your advance directives.” As a long-time associate of Pulse, I thought, “No worries, I’ve already done a healthcare proxy document.” So I went to look for it, just to make sure, and to refresh my memory about where it was stored.
Imagine my surprise and shock when I was only able to find blank proxy forms in my files. But I was pretty sure I had scanned what I had completed and stored it on the computer. Sure enough, there it was. But guess what? It had not been witnessed nor signed — not to mention that nobody else knew it was on my computer.
I asked my wife; like me, she “was sure” she’d done it, but had no idea where it might be amongst her papers.
Our mission was clear: get the things (re)filled, signed and witnessed, and make sure copies are in known and accessible places.
The TakeCHARGE Campaign recommends giving copies to family members, your health care agent (proxy), your doctor(s) and your hospital or care facility.
For Old and Young Alike
Janelle Williams is a junior at Hofstra University with a major in community health. She is working on The TakeCHARGE Campaign.
“The TakeCHARGE Campaign’s first step highlights what an advanced directive is, and its importance. From this step, I learned that anyone over the age of 18 is at risk unless you have taken action to sign forms that can protect you. For me, this was a big deal as I, for one, am over 18 and had never even heard about what an advanced directive is and how important it can be to me. This step made me take my own healthcare into my hands and discuss more with my family what I would want to be my end-of-life care decisions. Furthermore, I felt safer and more protected knowing that in the event of an emergency my loved ones can be there with me and make decisions for me if I am not able to.
The Joint Commission Supports the TakeCHARGE Campaign
The Joint Commission’s mission is to continuously improve health care for the public. One of the best ways to do this is to encourage people to become informed and active participants in their health care. That’s why The Joint Commission is proud to support the TakeCHARGE Campaign.
We kicked off the campaign in March with a display in our employee entrance, including a banner with the 5 Steps to Safer Health Care, TakeCHARGE pens, information about the campaign and a wallet card to keep track of medications. Staff were very interested in learning more, especially around advance directives. Each month we are highlighting the respective step of the 5 Steps to Safer Health Care in our internal newsletter and encouraging staff to visit The TakeCHARGE website.
In April, we focused on advanced directives, sharing information about what advance directives are, what types of health care advance directives there are and where you can find them. We shared some information from our Employee Assistance Program related to advance directives and also pointed staff to CaringInfo, a program of the National Hospice and Palliative Care Organization (NHPCO), where you can download a free advance directive form for your state. Currently, we’re working on a webinar with our Director of Quality and Patient Safety on advance directives.
Our staff are more aware of ways they can take a more active role in their health care thanks to the TakeCHARGE Campaign. The campaign has also raised awareness around the importance of completing advance directives before becoming a patient. We are looking forward to continuing to promote the TakeCHARGE Campaign in the coming months.
The New York StateWide Senior Action Council is proud to be a partner with the Pulse Center for Patient Safety Education & Advocacy and several other organizations in the new national TakeCHARGE Campaign.
We urge our Chapters, members and aging network organizations to learn about this important effort to increase patient safety and empowerment. This is a perfect activity to work on during the pandemic and this time of limited travel. It is something we can all so to further protect ourselves and our families Learn more on the website New York StateWide Senior Action Council
To help continue this important work, please consider making a donation in honor of, or in memory of someone special to you.