Preparing an End of Life Care Plan: Nurses Should Lead the Way

Preparing an End of Life Care Plan: Nurses Should Lead the Way

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.

Prepare for Your Care video on end of life care planning
Screenshot fom Prepare for Your Care video

There are resources that can help people approach and settle end of life planning issues. Organizations such as Prepare for Your Care, The Conversation Project, and Our Care Wishes offer step-by-step guides and workbooks to help people decide upon and formalize plans for end of life care.

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.

PICS (Post-ICU Syndrome): A Serious Challenge for COVID-19 Survivors

PICS (Post-ICU Syndrome): A Serious Challenge for COVID-19 Survivors

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.

References

Alberta Health Services (July 17, 2020). COVID-19 Scientific Advisory Group Rapid Evidence Report.
Retrieved from https://www.albertahealthservices.ca/assets/info/ppih/if-ppih-covid-19-sag-rehabilitation-needs-rapid-review.pdf

Inoue, S., Hatakeyama, J., Kondo, Y., Hifumi, T., Sakuramoto, H., Kawasaki, T., … & Kenmotsu, Y. (2019). Post‐intensive care syndrome: its pathophysiology, prevention, and future directions. 
Acute Medicine & Surgery6(3), 233-246. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6603316/

Jaffri, A., & Jaffri, A. (2020). Post-Intensive Care Syndrome and COVID-19: crisis after a crisis? 
Heart & Lung: The Journal of Cardiopulmonary and Acute Care. https://doi.org/10.1016/j.hrtlng.2020.06.006

O’Hanlon, S., & Inouye, S. K. (2020). Delirium: A missing piece in the COVID-19 pandemic puzzle.
Age and Ageing 1-2. doi:10.1093/ageing/afaa094. https://academic.oup.com/ageing/article/49/4/497/5831131

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

Phillips, M., Turner-Stokes, L., Wade, D., & Walton, K. (2020). Rehabilitation in the wake of COVID-19: A phoenix from the ashes.Accessed on May 12, 2020. Retrieved from https://www.bsrm.org.uk/downloads/covid-19bsrmissue1-published-27-4-2020.pdf

The Clinical Nurse Specialist Who Helped Transform AIDS Care

The Clinical Nurse Specialist Who Helped Transform AIDS Care

In an interview with Florida International University’s FIU Magazine, alumnus Cliff Morrison recounted the battle to treat AIDS patients with care and humanity in a time filled with widespread fear and misconceptions about the illness.

As described in the Johnson & Johnson nursing newsletter, “the stigma around the disease wasn’t limited to the general public, it also permeated healthcare systems around the world. Many healthcare workers were afraid to touch patients diagnosed with AIDS, sometimes refusing to provide treatment. Even as more information about the virus was discovered, patients were often isolated at their last stages of life, receiving reluctant treatment by healthcare professionals who hid behind layers of protective clinical uniforms.” As a clinical nurse specialist at San Francisco General Hospital, Morrison noticed—and was disturbed by—numerous instances of mistreatment owing to ignorance about how AIDS was spread. “I began to think, there are a number of people here who agree with me—nurses that I consider my allies, doctors of infectious diseases that I had worked with. So [I thought], maybe we should have an AIDS unit,” but instead of isolating patients, Morrison’s intention was to “develop the expertise and develop a standard of care.”

So, armed with evidence-based data from University of California-San Francisco and medical experts at San Francisco General Hospital, in 1983 Morrison founded San Francisco General’s Ward 5B for the care of AIDS patients. In Ward 5B, according to FIU Magazine, “Nurses embraced their patients, held their hands and even ate lunch with them when their friends and family had abandoned them.” As Johnson & Johnson (which sponsored a documentary on Ward 5B) puts it, “Nurses showed that you didn’t have to hide behind heavy clinical gear while treating AIDS patients or burn their beds when they passed away… By pushing back against stigma, the Ward 5B nurses showed the world the power of compassionate care and exemplified the profound impact nurses have on transforming human health.”

Morrison continued his crusade for the humane treatment of AIDS patients and went on to administer the Robert Wood Johnson Foundation AIDS health services program in 12 states. He attributes his advocacy to “a combination of things: the family values that I was taught growing up, the fact that I grew up with a religious foundation. I went into nursing, and all of those things complemented each other greatly. My work matched where I was as a person, and I stayed true to myself.”

The documentary on the revolutionary ward at San Francisco General Hospital, Ward 5B, can be viewed on a variety of video streaming sites.

Are Telehealth Advances Leaving Seniors Behind?

Are Telehealth Advances Leaving Seniors Behind?

Telehealth appointments with physicians. Family gatherings on Zoom and FaceTime. Online orders from grocery stores and pharmacies.

These have been lifesavers for many older adults staying at home during the coronavirus pandemic. But an unprecedented shift to virtual interactions has a downside: Large numbers of seniors are unable to participate.

Telehealth have-nots include older adults with dementia (14% of those 71 and older), hearing loss (nearly two-thirds of those 70 and older) and impaired vision (13.5% of those 65 and older), who can have a hard time using digital devices and programs designed without their needs in mind. (Think small icons, difficult-to-read typefaces, inadequate captioning among the hurdles.)

Many older adults with limited financial resources also may not be able to afford devices or the associated internet service fees. (Half of seniors living alone and 23% of those in two-person households are unable to afford basic necessities.) Others cannot make use of telehealth resources because they are not adept at using technology and lack the assistance to learn.

During the pandemic, which has hit older adults especially hard, this divide between technology “haves” and “have-nots” has serious consequences.

Older adults in the “haves” group have more access to virtual social interactions and telehealth services, and more opportunities to secure essential supplies online. Meanwhile, the “have-nots” are at greater risk of social isolation, forgoing medical care and being without food or other necessary items.

Dr. Charlotte Yeh, chief medical officer for AARP Services, observed difficulties associated with technology this year when trying to remotely teach her 92-year-old father how to use an iPhone. She lives in Boston; her father lives in Pittsburgh.

Yeh’s mother had always handled communication for the couple, but she was in a nursing home after being hospitalized for pneumonia. Because of the pandemic, the home had closed to visitors. To talk to her and other family members, Yeh’s father had to resort to technology.

But various impairments got in the way: Yeh’s father is blind in one eye, with severe hearing loss and a cochlear implant, and he had trouble hearing conversations over the iPhone. And it was more difficult than Yeh expected to find an easy-to-use iPhone app that accurately translates speech into captions.

Often, family members would try to arrange Zoom meetings. For these, Yeh’s father used a computer but still had problems because he could not read the very small captions on Zoom. A tech-savvy granddaughter solved that problem by connecting a tablet with a separate transcription program.

When Yeh’s mother, who was 90, came home in early April, physicians treating her for metastatic lung cancer wanted to arrange telehealth visits. But this could not occur via cellphone (the screen was too small) or her computer (too hard to move it around). Physicians could examine lesions around the older woman’s mouth only when a tablet was held at just the right angle, with a phone’s flashlight aimed at it for extra light.

“It was like a three-ring circus,” Yeh said. Her family had the resources needed to solve these problems; many do not, she noted. Yeh’s mother passed away in July; her father is now living alone, making him more dependent on technology than ever.

When SCAN Health Plan, a Medicare Advantage plan with 215,000 members in California, surveyed its most vulnerable members after the pandemic hit, it discovered that about one-third did not have access to the technology needed for a telehealth appointment. The Centers for Medicare & Medicaid Services had expanded the use of telehealth in March.

Other barriers also stood in the way of serving SCAN’s members remotely. Many people needed translation services, which are difficult to arrange for telehealth visits. “We realized language barriers are a big thing,” said Eve Gelb, SCAN’s senior vice president of health care services.

Nearly 40% of the plan’s members have vision issues that interfere with their ability to use digital devices; 28% have a clinically significant hearing impairment.

“We need to target interventions to help these people,” Gelb said. SCAN is considering sending community health workers into the homes of vulnerable members to help them conduct telehealth visits. Also, it may give members easy-to-use devices, with essential functions already set up, to keep at home, Gelb said.

Landmark Health serves a highly vulnerable group of 42,000 people in 14 states, bringing services into patients’ homes. Its average patient is nearly 80 years old, with eight medical conditions. After the first few weeks of the pandemic, Landmark halted in-person visits to homes because personal protective equipment, or PPE, was in short supply.

Instead, Landmark tried to deliver care remotely. It soon discovered that fewer than 25% of patients had appropriate technology and knew how to use it, according to Nick Loporcaro, the chief executive officer. “Telehealth is not the panacea, especially for this population,” he said.

Landmark plans to experiment with what he calls “facilitated telehealth”: nonmedical staff members bringing devices to patients’ homes and managing telehealth visits. (It now has enough PPE to make this possible.) And it, too, is looking at technology that it can give to members.

One alternative gaining attention is GrandPad, a tablet loaded with senior-friendly apps designed for adults 75 and older. In July, the National PACE Association, whose members run programs providing comprehensive services to frail seniors who live at home, announced a partnership with GrandPad to encourage adoption of this technology.

“Everyone is scrambling to move to this new remote care model and looking for options,” said Scott Lien, the company’s co-founder and chief executive officer.

PACE Southeast Michigan purchased 125 GrandPads for highly vulnerable members after closing five centers in March where seniors receive services. The devices have been “remarkably successful” in facilitating video-streamed social and telehealth interactions and allowing nurses and social workers to address emerging needs, said Roger Anderson, senior director of operational support and innovation.

Another alternative is technology from iN2L (an acronym for It’s Never Too Late), a company that specializes in serving people with dementia. In Florida, under a new program sponsored by the state’s Department of Elder Affairs, iN2L tablets loaded with dementia-specific content have been distributed to 300 nursing homes and assisted living centers.

The goal is to help seniors with cognitive impairment connect virtually with friends and family and engage in online activities that ease social isolation, said Sam Fazio, senior director of quality care and psychosocial research at the Alzheimer’s Association, a partner in the effort. But because of budget constraints, only two tablets are being sent to each long-term care community.

Families report it can be difficult to schedule adequate time with loved ones when only a few devices are available. This happened to Maitely Weismann’s 77-year-old mother after she moved into a short-staffed Los Angeles memory care facility in March. After seeing how hard it was to connect, Weismann, who lives in Los Angeles, gave her mother an iPad and hired an aide to ensure that mother and daughter were able to talk each night.

Without the aide’s assistance, Weismann’s mother would end up accidentally pausing the video or turning off the device. “She probably wanted to reach out and touch me, and when she touched the screen it would go blank and she’d panic,” Weismann said.

What’s needed going forward? Laurie Orlov, founder of the blog Aging in Place Technology Watch, said nursing homes, assisted living centers and senior communities need to install communitywide Wi-Fi services — something that many lack.

“We need to enable Zoom get-togethers. We need the ability to put voice technology in individual rooms, so people can access Amazon Alexa or Google products,” she said. “We need more group activities that enable multiple residents to communicate with each other virtually. And we need vendors to bundle connectivity, devices, training and service in packages designed for older adults.”

Originally published by KHN (Kaiser Health News), a nonprofit news service covering health issues. KHN is an editorially independent program of KFF (Kaiser Family Foundation), which is not affiliated with Kaiser Permanente.

DN Interviews Oncology Nurse Diane Paul, Founder of the Cancer Hope Network

DN Interviews Oncology Nurse Diane Paul, Founder of the Cancer Hope Network

Oncology nurse Diane Byrnes Paul founded the Cancer Hope Network (CHN) in 1981. CHN is a non-profit organization that provides free one-on-one emotional peer support to adult cancer patients and their loved ones. The Support Volunteers are all cancer survivors who are at least one-year post-treatment or are successfully undergoing maintenance therapies. The volunteers are available to support patients during diagnosis, treatment, and recovery. In this interview with DailyNurse, Diane Paul discusses her experiences with patients as an oncology nurse and describes the work of the Cancer Hope Network and its volunteers.

DailyNurse: How does CHN address the needs of cancer patients?

Diane Paul: Our goal is simple: to connect cancer patients, survivors, and loved ones with someone who understands what they’re going through. Our professional Programs Team, made up of healthcare and social work professionals, connect clients and volunteers based on a variety of factors. Ideally, matches are based on shared diagnosis or similar treatment protocols.

Cancer is more than just a physical challenge. Life experiences have a huge impact.  Our Programs Team works to meet those needs as well. Psychosocial factors – working through treatment, facing a diagnosis as the parent of young children or the helplessness of a husband who has spent his life as provider now finding himself dependent on his wife– can play a key role in finding the right volunteer/client connection. A case in point, our team matched a client who was a teacher requiring a leg amputation with another teacher who had undergone amputation. While their shared diagnosis and treatment created the initial connection, their ability to discuss how and what to disclose to their students was incredibly helpful.

One key benefit offered by CHN is the fact that our Programs Team follows up with each match, following the client and volunteer for the length of the connection. The team can provide additional resources when helpful and can step in when the needs of the client require additional support – or in the occasional instance when a client and volunteer are not a perfect fit. Using our cadre of volunteers, CHN is able to provide efficacious peer support for patients and caregivers.

DN: What are usually the first questions nurses hear from families and caregivers?

DP: Many cancer patients ask, “how are other patients doing on this treatment?” To tolerate the side effects of treatment and maintain a fighting spirit, patients need to know they are not alone in their feelings or their fight. They need hope that only a cancer survivor can provide. 

Connecting with a trained survivor who is on the other side of treatment is a powerful driver of hope. As doctors and nurses, we tell patients about potential side effects and challenges. But when a survivor tells you of their isolation after a stem cell transplant and the things that got them through it,  or you can talk with a survivor who’s neurogenic bladder hasn’t stopped them from playing tennis, “you will get through this” takes on new meaning. Anecdotally, we have seen that connecting with a CHN Support Volunteer can improve treatment compliance and help patients continue treatment through challenging side effects.

DN: What can cancer survivors do to support current patients?

DP: There is hope in knowing that no matter how difficult the diagnosis, how terrifying the treatment plan, or frustratingly exhausting the side effects, you are not alone and can survive. Someone who has walked this path before you and are here to walk with you. And that is where CHN’s volunteers often have a dramatic impact.

Hearing your doctor say “you have cancer” is a time-stopping moment. Our cadre of trained survivor volunteers have faced more than 80 types and subtypes of cancer, representing more than 98% of the cancers that will be diagnosed this year. They speak 15 languages and represent a cross section of demographics and life experiences (our youngest volunteer is 24 and our oldest 94.)

Thanks to that diversity, when a patient or their loved one calls CHN, we can connect them with someone who has been in a similar situation. That is what made us revolutionary in 1981 and keeps us relevant in 2020. Clients matched with a Support Volunteer can speak to someone who truly understands what they are going through.

DN: How do you find survivors and caregivers who are willing to mentor those who are currently facing the challenges of cancer treatment?

DP: Many volunteers come to us after having been matched with a Support Volunteer during their own cancer experience. People like Cyndie, who found great comfort with her Support Volunteer and has now served as a CHN volunteer for more than 20 years, helping others find comfort and hope through their treatments. Others are referred through their oncologist’s office or via support groups they have been a part of, while some find us online when researching ways to give back.

We hear time and again that training and serving as a Support Volunteer is an important step for many through survivorship. It is a way for them to “pay forward” their own experience and an opportunity to create something positive out of one of life’s worst experiences.

CHN welcomes volunteer applications from any survivor or caregiver more than one-year post-treatment. Learn more at https://www.cancerhopenetwork.org/how-to-help/volunteer/become-a-volunteer.html.

DN: What are some of the key points that you stress when training volunteer mentors?

DP: Our volunteers complete an extensive application process that includes an interview and then are required to attend either in-person or online training sessions. The training helps volunteers prepare to share their own cancer experience in a way that is helpful and supportive to patients and caregivers. It also covers best practices – setting boundaries, actively listening, guiding conversations and more.

Support Volunteers share their own experiences, but do not make treatment recommendations. The organization is nonpartisan and non-denominational. After training is complete, our volunteers are supported by our professionally led Programs Team. In addition to making matches, the team provides ongoing training and guidance for volunteers.

DN: Was there a specific experience that prompted you to make CHEMOcare/CHN a full-time project?

DP: In the early 80’s when CHN was founded, the physical side effects of treatment were more difficult than today.  There were limited medications to combat the gastrointestinal, hematologic, and other toxicities patients suffered through the course of treatment. Today there are a variety of medications and complementary therapies to help people combat the side effects of undergoing cancer treatment. However, one thing has not changed. That is the psychosocial impact of the diagnosis.

 I had an uncle at the time undergoing cancer treatment, and something he said resonated with me.  He told me that the worst part of the treatment was what it was doing to his mind, not his body.  The fear of dying, the feeling of loneliness even when surrounded by loved ones, the multiple changes to one’s life the disease evokes; these are the issues my uncle and patients all talked about. The idea for the program evolved from my uncle and my patients all needing help I could not provide. They needed to see a cancer survivor, someone who knew and understood exactly how they were feeling.  I saw that after meeting with a survivor, patients had a renewed sense of hope. Through that vicarious experience they felt that they, too, could survive. That is the essence of CHN and that is why the program is so necessary to include in the armament of resources provided to patients.

About Cancer Hope Network (CHN)

Cancer Hope Network (CHN) provides free one-on-one emotional peer support to adult cancer patients and their loved ones. Our 400+ volunteers are at least one-year post-treatment or successfully undergoing maintenance therapies. They offer support from diagnosis, through treatment, and into recovery.

Most support visits take place by phone, with conversations that last between a half hour and an hour. Support visits between survivor and cancer patient or caregiver occur as often as needed.  Some individuals prefer to remain in communication throughout their treatment and into survivorship – connecting before or after a major milestone like surgery or a first radiation treatment – or during regularly-scheduled calls. Email communication is also an option to stay connected. In non-pandemic times, support visits take place in person or onsite at one of our hospital or community partners.

Patients and caregivers can request a confidential match by calling 877.467.3638 (877-HOPENET) or visiting cancerhopenetwork.org. They may also be referred by nurses, social workers and other healthcare professionals   An online form can be completed at https://www.cancerhopenetwork.org/. Oncology professionals may refer clients or request materials at https://www.cancerhopenetwork.org/get-support/support/referral.html  

Death and Dying in a Pandemic: Preparing Nurses for End-of-Life Care

Death and Dying in a Pandemic: Preparing Nurses for End-of-Life Care

Nurses in every clinical practice specialty will encounter a patient who is dying and will provide care to that patient as well as give support to the patient’s family. This is not a new phenomenon and the experiences of nurses providing end-of-life care have been extensively documented (Coffey, et al., 2016; Holms, Milligan, and Kidd, 2014; Hussin, et al., 2018; Lusignani, et al., 2017; Puente-Fernandez, et al., 2020; Zheng, Lee and Bloomer, 2018). Over the last several decades, nurses continue to report a lack of education and preparation to manage the complex care associated with dying and decision making at the end of life (Holms, et. al, 2014; McCourt, et. al, 2013; Suryani, et. al, 2018). Nurses’ experiences with death and dying under “normal” circumstances can be challenging and emotional as they advocate for patients’ wishes and promote a comfortable, dignified death (Griffiths, 2019; Peterson, et al., 2010).

Enter COVID-19 – a coronavirus that affected the globe and caused healthcare workers, including nurses, to change their routine practice of caring for patients, particularly dying patients. There is no current literature on the effects of this global pandemic on nurses caring for this special population of dying patients.  Pattison (2020) reviewed some literature on disaster management and end-of-life care with outbreaks such as the H1N1 virus; palliative and end-of-life care planning is not fully developed and still needed. In this current pandemic, COVID-19 has caused a high number of unexpected deaths, there has been greater demand for beds and other resources, and provision of end-of-life care has been hampered due to respiratory transmission of the virus and maintaining safety for nurses at the bedside.

Nursing students, often employed in hospitals as patient care technicians, are witnessing death and dying at an alarming rate. As a professor at a local university, I have spoken with third and fourth-year nursing students who were working in hospital units designated for COVID-19 patients. The students shared that they were performing multiple post-mortem cares on patients that had died from the virus. Students also discussed the difficulty of trying to manage communication between the dying patient and their family, since visitors were restricted. Technology such as smart phones or tablets were used to have video conversations between patients and families as the patient was nearing the end of life.

It is imperative that nurse educators in both academia and healthcare systems provide additional and continuing education and support to nursing students as well as nurses practicing at the bedsides of the dying. The high stress environment of a COVID-19 unit paired with critically ill patients who may die unexpectedly may cause burnout in nurses. Resources such as the End of Life Nursing Education Consortium (ELNEC) are available online for educators to share with students and nurses.  ELNEC has provided educational resources for palliative care and end-of-life care to nurses for the last two decades. Information in the modules includes physical symptom management, pain, spiritual care, ethical/legal issues and communication. ELNEC has created free online resources in response to COVID-19 and may be useful for pre-licensure education as well as continuing education and support for nurses (ELNEC, 2020).

Further support which can be provided to students and nurses includes virtual support groups, arranged by nursing faculty, hospital nurse educators or referral to social media support groups. When nurses are ready to talk about their experiences with dying patients, they need an outlet to express their emotions regarding their participation in end-of-life care during a pandemic. This may assist in validating their feelings and sharing their grief. Additional strategies to enhance positive coping mechanisms include self-care such as exercise, sleep, healthy diet, leisure activities, and spiritual or religious support (Zheng, Lee and Bloomer, 2017).

COVID-19 has changed the way nurses interact with patients and families at the end of life. Technology has been a useful tool; however, we must not forget the human side of care. The need for pre-licensure and continuing education on end-of-life care is essential. Nurses have been reporting high anxiety and lack of preparedness about caring for a dying patient over the last several decades. We must provide education as well as emotional support to our front line during this pandemic as well as prepare for future pandemics and other unusual circumstances surrounding the end of life.

References

Coffey, A., McCarthy, G., Weathers, E., Friedman, M., Gallo, K., Ehrenfeld, M., Chan, S., Li, W., Poletti, P., Anotti, R., Molloy, D., McGlade, C., Fitzpatrick, J. & Itzhaki, M. (2016). Nurses’ knowledge of advance directives and perceived confidence in end-of-life care: A cross-sectional study in five counties. International Journal of Nursing Practice, 22, 247-257. DOI: 10.1111/ijn.12417

ELNEC (2020).  End of life nursing education consortium.  https://www.aacnnursing.org/elnec

Griffiths, I. (2019).  What are the challenges for nurses when providing end-of-life care in  intensive care units?  British Journal of Nursing, 28, (16), 1047-1052.

Holms, N., Milligan, S. &  Kydd, A. (2014). A study of the lived experiences of registered nurses who have provided end-of-life care within an intensive care unit. International Journal of Palliative Nursing, 20, (11), 549-556.

Hussin, E., Wong, L., Chong, M. & Subramanian, P. (2018).  Nurses’ perceptions of barriers and facilitators and their associations with the quality of end-of-life care. Journal of Clinical Nursing, 27, (3-4), e688-e702.

Lusignani, M., Gianni, M., Re, L. & Buffon (2017). Moral distress among nurses in medical, surgical and intensive-care units. Journal of Nursing Management, 25, 477-485. DOI: 10.1111/jonm.12431

McCourt, R., Power, J. & Glackin, M. (2013).  General nurses’ experiences of end-of-life care in the acute hospital setting: A literature review.  International Journal of Palliative Nursing, 19, (10), 510-516.

Pattison, N. (2020). End-of-life decisions and care in the midst of a global coronavirus (COVID19) pandemic.  Intensive & Critical Care Nursing, 58. DOI:10.1016/j.jccn.2020.102862

Peterson, J., Johnson, M., Halvorsen, B., Apmann, L., Chang, P-C, Kershek, S., Scherr, C., Ogi, M. & Pincon, D. (2010).  What is so stressful about caring for a dying patient? A qualitative study of nurses’ experiences.  International Journal of Palliative Nursing, 16, (4), 181-187.

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