Most nurses understand the importance of discussing end of life care and preparing advance directives, but they are only human—and it is very human to avoid confronting the prospect of one’s own death. The pandemic should serve as a wake-up call, though, especially for nurses, who are even more vulnerable to the virus than other healthcare workers. With the number of lives lost to COVID-19 passing 200,000 in the US and 1 million worldwide, if you have not already discussed end of life care with your friends and family, it’s time to act.
Nurses know from first-hand experience that most patients who run the code blue gauntlet never sat down with their loved ones to discuss the decisions and consequences that come with end of life care. There is a natural reluctance on both sides. Most people shy away from thoughts about their own death, and it is painful even to imagine losing someone you love. It can be so distressing and awkward to discuss end of life care, that a spouse or parent who tries to broach the subject is often shut down without a hearing.
People tend to agree that they should make preparations for their end of life care, but there is a substantial gap between beliefs and deeds. In a 2017 Kaiser Family Foundation poll, 87% of the respondents—young adults as well as senior citizens—said they considered it “very important” to have a document of their wishes for end of life treatment. However, only 34% had actually documented their wishes for medical care if they became seriously ill, and just 18% had discussed end of life issues with their doctor. Ironically, 95% of the respondents to a 2018 survey by The Conversation Project said that they were willing or wanted to talk about their end-of-life wishes. It can be that difficult to take action on a matter one believes to be “very important.”
What can you do to help? If you make plans for your own end of life care, you will be in a better position to persuade patients to make and document their own arrangements. Perhaps you already make a point of discussing these issues with patients, but haven’t prepared your own plans? The pandemic is giving many nurses a new sense of urgency. A 27-year-old ICU nurse, Deborah Szeto, shared her experience on The Conversation Project blog, admitting, “as someone who frequently talks to her patients about having honest conversations with their loved ones about their end-of-life preferences, the COVID-19 pandemic was the final push I needed to truly practice what I preach.” She found herself “reading article after article about seemingly healthy young adults being hospitalized for COVID-19 symptoms. Some of the most chilling stories were about young ICU nurses. I imagined myself on high flow oxygen—or worse, intubated…” Instead of hiding from her fears or denying them, she proceeded to fill out an advance directive and emailed a copy to her healthcare provider.
You can read ICU nurse Deborah Szeto’s blog on COVID-19 and end of life planning here. Our Care Wishes offers a series of guides and helps users to create a free custom document recording their medical care decisions. To find an advance directive designed for your state, visit the Prepare Advance Directive page on the Prepare for Your Care site and select your state from the drop-down menu. For information on how to select or be a health care proxy, see this guide from The Conversation Project.
Enterprise High School students refused to allow anti-mask protesters to disrupt the start of the new school year. Senior Dalee Cobb, a cheerleader and javelin thrower, declared, “I feel like the opinion of parents and adults in general right now are just a big part of that problem.” Prior to a football game in late August, Cobb and other student athletes at the Utah school urged their community to take a stand against a growing anti-mask movement that threatened to postpone local school reopenings: “We, of all people, know that wearing a mask is not fun, “Cobb said. “Neither is wearing a seat belt or a life jacket or pads for football, but we do all these things so we have a future.” (As of September 1, there have been over 52,000 COVID-19 cases in the state).
As the public becomes accustomed to the ebb and flow of COVID outbreaks, a resurgence of protests against the state mask-wearing mandate came into conflict with the reopening of Utah’s public schools. Students became alarmed when hundreds of parents demonstrated outside the school district administration office and circulated threats to engage in a #NoMaskMonday. Enterprise students decided to use the football game as a platform to take action to protect their own health—and persude parents to send their kids to school in masks so they would be able to resume classes. “We ask that you put your mask on so we can get our game on,” Cobb said, as she urged local football fans to look out for the best interests of their community.
That weekend, Enterprise students also made use of social media to counter parents attempting to organize a #NoMaskMonday protest. Cobb told the Deseret News, “It’s sad to say, but the parents that are doing this, they aren’t us.” School Principal Calvin Holt supported students’ efforts and remarked, “[Students] were concerned about what a rebellion against masks was going to do to their opportunities for school and other activities.”
When schools did open, according to Deseret News, “Most students complied with the mask order, though the school district received some phone calls from concerned parents who got calls or messages from their children that not all students were wearing their masks all the time inside school buildings.” By the end of the first day, the local school district reported that no more than six students had been sent home for refusing to wear masks.
Anti-mask protesters cite a variety of reasons for their refusal to wear a mask. Some refer to the mixed messages that prevailed in the early stages of the pandemic; some are vehemently opposed to statewide mask mandates (at present 34 states require that masks be worn in many public settings); others say that they are still dubious about the severity of COVID-19 and have adopted various conspiracy theories promulgated on social media; a large contingent of anti-mask protesters, of course, use all of these arguments.
Nurse of the Week Stephanie Walker had been a registered nurse for almost 40 years when she was diagnosed with metastatic breast cancer (MBC) in 2015. After working in pediatric intensive care, she had spent the last 15 years as a hospice nurse. Her MBC was asymptomatic, and Stephanie continued to work at the hospice. At the time, she had an average person’s knowledge about MBC: “They said, ‘well, you’re a nurse!’ They assumed I knew, but I knew nothing.”
What did her nursing experience teach her about cancer? “In the pediatric world, I dealt with a lot of pediatric oncology. That’s different, but I used that as my guide when I was confused and didn’t know who to reach out to. I went back to the days when these kids would have to get chemo, and they would get up the next morning—I’m sure they felt like garbage; their hair would be falling out… But you know? They wanted to go to the playroom and play! And that’s where I would go, ‘those kids can do it, and they’re just 4, 5, 6 years old; I’m 57. Why can’t I?’”
Stephanie, now 61, is living in a rural community in North Carolina. Although health issues forced her to leave work in 2018, she has become an active MBC advocate and was recently featured in a video on the Facing MBC Together site. DailyNurse met with her to talk about life with MBC before and during the pandemic.
DN: Has living in a rural area during the pandemic affected your cancer treatment?
SW: “It isn’t bad as far as treatments are concerned. I get my cancer treatment at a community center that’s 25 miles away, and when I talk to the nurse-managers here, they’ve not missed a beat.”
DN: What made you decide to try to locate other MBC patients in your community?
“I’m an easy person to talk to; I’ve never met a stranger. I can easily strike up a conversation with anybody. When I came to North Carolina, I thought, ‘I’m doing well; there’s got to be other MBC patients that… live in NC, who want to get together and do stuff. Not talk about medicine, but you know, have fun.’ I got together an online MBC group and started reaching out through Facebook groups. I had 20-25 people who were members of the group, and we met in the center of the state.”
DN: When did you have to stop working? How did you adjust?
SW: “In February 2018 I was diagnosed with a blood clot on my lung and had a stroke. That was when I lost the job I’d only had for 90 days after we’d moved here [to NC], and I lost my insurance. That was when I started needing mental health support. I wasn’t even close to retiring, and I loved my job—being a hospice nurse. I still keep in touch with some of the families that I met. It wasn’t just a job; it’s a calling from God. I loved what I did; I loved nursing.
I had no income, and I was the primary bread-winner of the family, as my husband’s retired. So, when I started looking for organizations that could help us, I ran across this conference, and they were offering travel grants to get you there. I said to my husband, ‘hey, maybe I can go, and I can learn more about MBC.’ So I went.
That’s when my world really opened up to MBC. I went to my first conference in April 2018, ‘Living Beyond Breast Cancer.’ I walked around that whole conference, I’m sure, like a deer in the headlights. That was my first exposure to a big group of people like me—and a lot of them were African-American women! [Ms. Walker is African American]. I was amazed at the number of people.”
DN: So you’ve since become seriously involved in cancer advocacy and patient education?
SW: “From there on I’ve been advocating and speaking and doing everything I can to get people to take a look out here, eastern North Carolina to the coast area. The more conferences I went to, the hungrier I got to learn more, and I wanted to learn more about research as well. I’ve done a lot of research and medical literacy is a big issue here. Educational levels are very low; it’s heavily farmland. You have people who come in to work the land, and that’s it. There are also a lot of Latinx people who don’t know the language and don’t know a lot about healthcare. And then you have African-Americans, and African-Americans don’t trust the healthcare system for—you know, reasons, and they don’t want to talk about it.”
DN: Cancer is a frightening thing. It’s sort of a cultural taboo, so it’s understandable that some people try to ignore their diagnosis and hope it will just go away.
SW: “It’s one thing to ignore an early stage breast cancer diagnosis, but you can’t ignore a late-stage diagnosis. I mean, I’m at five years. I celebrated myself living with it for five years because being diagnosed with stage 4 breast cancer right out of the gate, even asymptomatic, you’re told [that you have] 36 months. So it’s like, ‘hell no! I’ve got things to do!’ My daughter’s pregnant; I’ve got to see this grandbaby. There are driving forces, but not enough to put my head in the sand.
But just last week I met a lady who has MBC—she goes to the same community clinic that I do, and we’ve met in various online support groups—and she told me that she had progression; the cancer has started to go to her lungs. I said, ‘my goodness. What treatment are you on?’ She said, ‘oh, I don’t know. I show up; they give me my treatment. I sleep while they give it to me, and when it’s over I go about my day.’ And she’s not a young lady. She’s 57 years old. So, to have that kind of attitude… Don’t put your head in the sand; it won’t make you live longer. I’m not saying everyone should embrace it, like I do, but it will kill you quicker if you don’t address it.”
DN: How has the pandemic changed the way you connect with other people with MBC?
SW: “Before Covid came along, there were support meetings. They were for all cancers, but the people who normally show up at those meetings usually are breast cancer patients. This year, I had my heart set on a couple of conferences… The first one was the LBBC (Living Beyond Breast Cancer) Metastatic Breast Cancer conference in April, but Covid came along, and took it away. The conference was virtual. My husband took part in it, too, and he was very pleased with the caregiver aspect. I’ve done a few other virtual conferences. I’ve done ASCO (American Society of Clinical Oncology) and Careers and Cancer—that one is for people who have cancer and are trying to go back to work. There are a few others coming up that deal with MBC, like the MBCRC, the Metastatic Breast Cancer Research Foundation (September 9-11). That one was going to be in Salt Lake City, and of course it got blown away too, so that one’s virtual.
I do a lot virtually, but it’s not the same. You don’t get to see the people you’ve met online, or met at past conferences, and a lot of us don’t go very many places.”
DN: What has daily life been like for you during the pandemic?
SW: “I walk every morning between 6-6.30 (as almost no one is out at that time); I go to doctor appointments. I go to the grocery store occasionally. I wear a mask whenever I go out. But I don’t want all the time I have left to be spent in the house. My husband and I are actually planning a cross-country trip, and that’s going to be a big one for next year. Also, next month a friend of ours has a time-share, and we’re going to spend a week at the beach. We can get takeout and eat in the condo, so we don’t really have to be around other people. I just need to get out.”
DN: How has your health been lately? And has your medical treatment changed during the pandemic?
SW: “As far as cancer is concerned, I’m stable and have been since 2016. I’m still getting my monthly treatments—I’ll be in treatment of course forever—but I’m doing well, considering.
I still go to most of my doctor appointments [in person]. The only telehealth ones that I have are with my psychologist. With Zoom, I can see him, and we can talk, but you miss that… I don’t know. You can see someone’s facial expressions, but you can read a person a little bit better if you’re face to face. I pray that the isolation ends soon; it’s really a drill.”
DN: What would you say to someone who has just been diagnosed with MBC?
SW: “I always want people to know you should take somebody with you to your appointments. Get a notebook and write down your questions beforehand—because when you get there, all bets are off, and you’re not going to remember most of them. Stay off Doctor Google. If you Google everything initially, it will scare you to death. And just have an open, positive attitude.
Ask questions—please ask questions! Don’t take what someone says as the Holy Grail, and don’t let someone steer you into a direction you don’t feel good about. I actually fired one oncologist. Not only do you need to have that open relationship with your oncologist, but their staff is important too. Nine times out of ten, you’re going to talk to the staff before you talk to him or her. If you can’t have a positive, cordial, open relationship with the front staff, you should find somebody else. And you should tell them, ‘I left because your staff sucks.’ You have to find somebody that you’re comfortable with, because you’re going to forge a relationship with that person. They’re going to see you at your best and see you at your worst. You need to find somebody you trust, so you can come out being the best you can.
My first oncologist was the director of the hospice where I worked. He knew how hard I worked, how much I cared, and he knew that quality of life was very important. I asked him, one, ‘have you ever seen anybody with MBC?’—I mean, I didn’t know, and then, ‘are they still living, and how long has that person been living with it?’ And I said, ‘your goal is to make me have the best quality of life for as long as I possibly can.’”
DN: Finally, where should someone with MBC go to find reliable information?
SW: “You need up-to-date, evidence-based material. You can find that at the American Cancer Society, Living Beyond Breast Cancer, and Susan G. Komen. Those are my go-tos. They tell you what questions to ask on your first visit, information on side effects, financial toxicity, mental health—you can find all of that in one area, and they have help lines.”
Stephanie is also an ambassador for Facing MBC Together, a public education and patient support campaign that addresses isolation for people living with metastatic breast cancer (MBC). The Facing MBC Together website includes videos featuring Stephanie and 8 other people of diverse ages and backgrounds as they share insights about the challenges they face, sources of support, and offer words of encouragement for others living with MBC. For more information visit www.FacingMBCTogether.com.
Even healthcare professionals may not be aware and prepared for a condition called Post-ICU Syndrome (PICS) that can occur in the aftermath of COVID-19. What about those who were hospitalized for COVID-19, treated in ICU, and are unaware of the possible long-term impact and rehabilitation phase? There is a tendency to think that once the patient is discharged from the hospital, has tested negative, and looks well, the problem is resolved. However, the struggle of COVID-19 survivors and family members or caregivers may not end there.
PICS is an ongoing challenge that may potentially present as a public health crisis. PICS is a term used to describe the group of impairments faced by ICU survivors. It can persist for months or years. PICS encompasses a combination of physical, neurological, social, and psychological decline (Jaffri & Jaffri, 2020). The physical impairments include intensive care acquired weakness, classified as critical illness myopathy, neuropathy, and neuromyopathy. Cognitive and psychological impairments involve impaired memory, language, delirium, depression, anxiety, and post-traumatic stress disorder (Inoue et al., 2019). Especially in COVID-19 ICU patients, some of these impairments are not just because of critical illness, but the invasion of virus in multiple tissues (Papathanassoglou, Manhas, & Kusi-Appiah, 2020).
During the COVID-19 pandemic, critically ill clients are considered the most vulnerable to PICS. Among these, 30% suffer from depression and 70% experience anxiety and post-traumatic stress disorder after ICU discharge (Inoue, et al., 2019). Moreover, survivors can experience additional stress as a result of isolation and limited contact with loved ones/family and reduced contact with staff due to precautionary measures such as personal protective equipment (O’Hanlon & Inouye, 2020). Therefore, every patient suspected of PICS needs early rehabilitation and a formal mental assessment at acute and post-acute phase.
The risk of PICS is not confined to patients. The aftermath of critical illness affects not only ICU survivors but also has a great impact on their families, who may suffer from anxiety, somatic symptoms, stress and complicated grief. Such adverse effects are classified as post ICU syndrome-family (PICS-F) (Inoue et al., 2019). Another challenge PICS clients face is potential financial instability. The majority face difficulty in returning to their usual work, some become jobless and some experience occupational challenges, and the list does not end here. They may encounter extreme difficulties in performing daily living activities and limited mobility, social responsibilities, and interactions (Jaffri & Jaffri, 2020).
So, what can be done to meet the challenge of PICS? Mobilizing an early rehabilitation response is vital. Multidisciplinary teams including nurses, doctors, physiotherapists, occupational therapists, psychologists, nutritionists, and so forth can develop early rehabilitation protocols to curb PICS complications in survivors and increase their functional capacity. COVID-19 survivors may require extensive and prolonged rehabilitation. Some require tertiary rehabilitation centers and others may need community-based care (Papathanassoglou, Manhas, & Kusi-Appiah, 2020). Therefore, an appropriate post-acute care setting is required to address physical, psychological, and cognitive impairments resulting from infection, mechanical ventilation, and prolonged ICU stay. Additionally, to ensure rehabilitation and healthcare professional safety to prevent viral transmission to clients and providers, tele- or virtual rehabilitation facilities need to be initiated early to address impairments encountered by PICS survivors of COVID-19 (Phillips et al. 2020). A comprehensive discharge plan inclusive of immediate needs, goals, interventions, follow-ups, and a comprehensive rehabilitation assessment are strongly recommended to facilitate the diversity of rehabilitation issues and planning of treatment post-hospitalization (Alberta Health Services, 2020). A crucial time has arrived. There is an immediate need to implement tailored care to address PICS related impairments in COVID-19 survivors.
Papathanassoglou, E, Manhas, K. P., & Kusi-Appiah, E. (2020). Beyond acute respiratory distress: Multiple organ effects and early rehabilitation in COVID-19. Connect: The World of Critical Care Nursing, Vol 13 (4), 1–7. DOI: 10.1891/WFCCN-D-20-00008. https://connect.springerpub.com/content/sgrwfccn/13/4/155
The Official Journal of the World Federation Of Critical Care Nurses
Connect: The World of Critical Care Nursing
This international, peer-reviewed journal provides a forum for critical care nurses and allied health practitioners to share their critical care practice and research that has an impact on patient outcomes and practice innovations. Additionally, CONNECT empowers the voices of persons with a critical illness experience and their families and caregivers, allowing them to inspire the critical care community through making their perspectives, struggles, and successes visible.
Healthcare providers all over the globe are fighting the good fight, working to inculcate healthy hand hygiene habits among youngsters.
In Ottawa, Canada, schoolchildren aged 6 through 9 are following the World Health Organization’s (WHO) six-step hand-washing routine while singing kid-approved lyrics to the tune of “Frere Jacques”:
“Scrub your palms, between the fingers
Wash the back (one hand), wash the back (other
Twirl the tips (one hand) around (other hand)
Scrub them upside down
Thumb attack (one thumb)! Thumb attack (other
To test the effectiveness of the didactic sing-and-wash routine, researchers applied fluorescent marks to the kids’ hands prior to hand-washing and checked for the reduction of the markings afterwards.
India, researchers from the University of Glasgow in Scotland and Amrita
Vishwa Vidyapeetham University have been conducting their own experiments in
improving kids’ hand hygiene. At a government primary school in Kerala, 45 Indian
students ages 5-10 were trained in hand-washing skills while guided by an anthropomorphic
hand-shaped attendant named Pepe.
Mounted on a wall beside the school’s hand-washing stations, Pepe consists of a basic robotic arm assembly with a plastic hand and a videotronic “mouth” through which he “speaks” to students as they wash. As kids clean their hands, Pepe refers them to an illustrated poster depicting an eight-step hygienic hand-washing routine, and “follows” their progress with his moveable eyes. Pepe has taught students to wash their hands before meals and after using the toilet, and overall has improved their hand-washing skills by 40%, according to the researchers.
In addition to the marked improvement in the children’s hand
hygiene habits, Pepe was a hit. Over 90% of the students said they would like
to see Pepe again after their summer holiday, and “over seven in 10 of them
thought Pepe was alive, largely due to its ability to talk.”
Other projects focus on the spreading of germs to emphasize the importance of proper hand hygiene. During a height-of-flu season lesson at Angie Grant Elementary in Benton, Arkansas, a school nurse, Ronda Wagner, collaborated with second-grade school teacher Anna Lawrence to depict the ease with which germs can be transferred. They coated a soft football with a special powder, which students then tossed among themselves in the room. Afterwards, viewing themselves under ultraviolet light, the kids could see that the powder had spread—not only to their hands—but also to their faces and arms.
The Centers for Disease Control (CDC) presents compelling reasons to encourage training in hand hygiene at an early age. According to the CDC, hand-washing education can:
Reduce the number of people who get sick with diarrhea by 23-40%
Reduce diarrheal illness in people with weakened immune systems by 58%
Reduce respiratory illnesses, like colds, in the general population by 16-21%
Reduce absenteeism due to gastrointestinal illness in schoolchildren by 29-57%
And if plain statistics on hand hygiene are too dry for youngsters with dirty hands, you can always refer them to the revolting findings of the (figuratively) viral “Bread” science project of behavioral Specialist Jaralee Annice Metcalf in Idaho.
When Nicole Baldwin, MD, made a playful TikTok touting the benefits of
vaccination, she wasn’t expecting to fight an endless social media battle that
destroyed her online ratings — and even led to a threat against her life.
In her TikTok, Baldwin, a pediatrician in suburban
Cincinnati, listed a handful of diseases that vaccines prevent to the pop song
“Cupid Shuffle,” ending on the note that vaccines don’t cause autism.
wasn’t an instant hit when she posted it on Saturday, Jan. 11, but by Sunday it
had 50,000 views so Baldwin decided to share it on Twitter.
“That’s when everything exploded,” she told MedPage Today.
Members of the “anti-vax” community discovered it and launched a
“global, coordinated attack,” posting negative comments across
Baldwin’s social media pages including her Facebook
They also went for the jugular: knowing that a physician’s online presence
is critical, they barraged her online review sites, including Yelp and Google Reviews, with one-star reviews to sabotage her
Some even called her practice, Northeast Cincinnati Pediatric Associates,
and harassed the staff. One woman — whom Baldwin described as “very
angry” — threatened to “come and shut down our practice,” prompting
Baldwin to call the police.
But most intimidating was a post from an anti-vax Facebook group that said, “dead doctors don’t lie.”
“Shots Heard Round the World:” A Pro-Vax Sheriff in Town?
“Ultimately what the anti-vax community wants is to scare us into
silence,” she told MedPage Today.
Baldwin first tried to stem the tide on her own by deleting comments and
reporting abuses. Then she enlisted the help of a friend, and then her husband,
until it became too much to manage — which was when she called in Shots
Heard Round the World, a network of vaccination advocates who describe
themselves as a “rapid-response digital cavalry.”
Founder Todd Wolynn, MD, a pediatrician in Pittsburgh, knows what it’s like
to be on the receiving end of a global social media attack from anti-vaxxers.
In 2017, his practice Kids Plus Pediatrics posted a video promoting HPV
vaccination that triggered a massive blast from the anti-vaccine crowd.
Some 800 different accounts posted more than 10,000 negative anti-vax comments to the practice’s Facebook page, Wolynn said. Associates of Shots Heard who had infiltrated some of the anti-vax Facebook groups sent him screen shots of commenters who were celebrating their efforts of posting bad online reviews for the practice.
Baldwin had learned about Shots Heard through a talk Wolynn gave in Ohio and
had signed up to be part of that team. Little did she know she’d be the one
needing the help.
“One doctor has no time to handle all of this,” Wolynn told MedPage
Today. “We have a vetted rapid-response network that can come to your
He said anyone can send an email to the Shots Heard alert box, and once it’s
vetted, the request for online help is distributed through an email blast to
their network of vaccine advocates — other doctors, nurses, paramedics,
parents, and others who promote vaccination science.
Baldwin said that since she allowed Shots Heard to take over her Facebook account, they’ve been posting positive comments and blocking commenters from her page; a total of 5,000 anti-vax accounts have been banned as of Monday night, she said.
“Docs Need to Know That There’s Help Out There”
Shots Heard is also helping to get the fake online reviews taken down, which
is never easy, particularly with Google, Wolynn said. But ongoing media
coverage likely pressed the tech giant into taking down the reviews, Baldwin
Yelp, which has a process for removing fake reviews, took most of them down
and posted a box on the page noting that the practice has been in the news
recently. Some fake reviews could still be seen on the page on Monday
“They’ve been amazing,” Baldwin said of Shots Heard. “Doctors
need to know that there’s help out there if we’re attacked. We don’t need to
give in to these bullies.”
While there’s been debate in the medical community over the utility of TikTok
for sharing messages about medicine and health, Baldwin said she won’t be
quitting anytime soon, and that it’s an effective way to reach the young people
who are her patients.
That includes aspiring physicians, she said: “I’m getting messages from young people who say they want to go to medical school, asking about classes.” She adds, “It’s also showing that doctors are human and can have fun.”
by Kristina Fiore,
Director of Enterprise & Investigative Reporting, MedPage Today