Portal de Periódicos da CAPES

“Good” Death During the Pandemic

2020; Elsevier BV; Volume: 21; Issue: 6 Linguagem: Inglês

10.1016/j.carage.2020.07.005

2377-066X

Joanne Kaldy,

Disaster Response and Management

“Surrounded by family” is a phrase often used to depict the concept of a “good” death. To die among loved ones is something we desire for ourselves and practitioners want for their patients. The COVID-19 pandemic has changed everything. “It’s hard enough to wrap your brain around death, but this is even more difficult when people have to die alone — without loved ones or even caregivers or other team members at their bedside. That, as much as anything, is making this pandemic about traumatic grief and loss,” said Carla Cheatham, MA, MDiv, PhD, TRT, author of Hospice Whispers: Stories of Life (SCIE, 2015). Add to that, she said, how quickly and unpredictably this illness kills, and it is devastating. Clearly, how we think and talk about death and dying has been turned upside down by the pandemic. However, there are stories of great courage, incredible expressions of love and compassion, and inspiring ways to help patients, families, and staff alike find comfort and strength during this pandemic and moving into its aftermath. “The lack of presence is among the most difficult parts of this pandemic. It taps into all of our biggest fears about dying alone and not having the chance to say goodbye,” said Dr. Cheatham. “A complicated grief comes from this lack of ability to be present with a dying loved one.” Although there is no substitute for the human touch and the ability to be with a dying loved one, communities have been agile and creative about ways to enable some connection. “We have seen the use of phone calls and video conferencing,” Dr. Cheatham said. She stressed the importance of not underestimating the value of these simple measures: “Having someone on the phone to say, ‘We are with you’ can be very profound and powerful.” Dr. Cheatham observed that music has been a powerful tool to help residents feel connected and comforted when in-person visits aren’t possible. For instance, she’s seen outdoor concerts and musical performances and residents able to listen and watch through open windows or on a screen. “This can be a wonderful way to provide something that is very meaningful and comforting for people,” she said. Family members can have their loved one’s favorite songs played; or if a relative or friend is a musician, he or she can serenade the resident. Hearing a loved one’s voice can trigger happy memories and bring great comfort. Family members can make videos or read messages, songs, poems, stories, and more, or they can record these on cards or stuffed animals. “These can be very meaningful and comforting for all residents, not just those with COVID,” said Dr. Cheatham, as no one is allowed to have visits while communities are on lockdown. Even when family members and staff can’t hug a resident or hold the person’s hand, it is important to realize the value of gestures that appeal to other senses. Dr. Cheatham stressed, “Don’t assume that touch is the primary ‘love language’ for everyone.” For instance, a smile and a meaningful gaze via video or from the other side of a door or window can be impactful. Dr. Cheatham said, “There is a tremendous amount of comfort in seeing and being seen. “Sights, sounds, and smells can trigger fond memories and feelings of love and happiness. Family members can leave a stuffed animal that looks like mom’s favorite dog. A wife can leave a sweater with her perfume on it for her husband. A granddaughter can record herself reading a favorite story for her grandfather. We can think about actions, gifts, or words of comfort or inspiration that will resonate with the resident. We can tap into other senses when touch isn’t possible,” said Dr. Cheatham. Carolyn Daniels, LCSW, CT, a faculty member in the Barry University School of Social Work in Miami Shores, FL, suggested that things like drive-up visits, artwork, pictures and photo albums, and social media posts are other ways to connect and show love when visits aren’t possible. “We can help people see how we are keeping their loved one comfortable in ways that are meaningful to that person. This means finding ways to share with families — whether it’s via emails, photos, videos, and phone conversations — how residents’ quality of life, needs, and wishes are being met.” When a resident dies during this pandemic, many religious and cultural rituals — such as viewings and traditional funerals with people gathered at a church or graveside — can’t be carried out. “We can substitute new rituals that will be meaningful,” said Dr. Cheatham. “We can have virtual memorial services with music, readings, and speakers. In fact, hospices across the country are reporting higher attendance at these events. We are learning new ways to grieve together virtually.” Helping families focus on and embrace what is possible is crucial. While there are things we can’t do for patients at the end of life during this pandemic, there is much we can do. For instance, Dr. Cheatham said, “We can focus on legacy. We can have Zoom sessions where family and friends share stories. We can capture videos, photos, and voice recordings.” Family members can focus on things about their loved one that influenced them and how they have and will continue to incorporate these in their lives. They can discuss how they will keep this individual’s legacy alive. Ms. Daniels added, “When the resident is still able to engage in legacy-making, they can do this through art, videotaped conversations, writings, or even a prayer shawl. This allows the anticipatory grief process to involve a celebration of life.” Of course, she noted, “this may or may not work for a resident who is physically declining. As the body shuts down, so does the individual’s stamina, ability, and need for socialization as they turn inward to prepare for the transition of death.” In these cases, she suggested, the family can coordinate with the staff to create what would constitute a “good death” for that person. While ensuring comfort for residents and families is the top priority, it is essential to take care of staff who also are grieving as they watch residents, some of whom they’ve known for years, die alone. “We are dealing with our own moral distress and injury. We need to acknowledge the reality of the situation and how terrible it is,” said Dr. Cheatham. It is important to give ourselves and each other permission to mourn and express our feelings. “We are all grieving. It’s a normal reaction to an abnormal situation. If we don’t find a way to deal with our grief, it can come out sideways,” said Dr. Cheatham. For example, someone may fall apart over a broken coffee cup or explode because a sandwich was made with the wrong bread. Expressing grief is healthy, she observed, and is an important first step in the healing process. Long-term care community leaders need to create a culture where the staff are comfortable expressing their feelings and seeking help when they need it. Ms. Daniels said, “Some facilities don’t talk about death and expect staff to move on quickly when a resident dies. Others have rituals and encourage self-care. COVID is striking down residents who didn’t have terminal conditions. More than ever, you have sudden deaths that impact people. We have to find a way to let everyone acknowledge their pain and grieve in their own way.” Everyone’s grief matters, stressed Ms. Daniels. She observed, “A lot of people working in nursing homes are trained to accept that death is part of the job, but we’re all only human. People may seem like they are okay when they’re really just stuck in the shock and disbelief stage.” She observed, “We’re all going around with grief right now. We need to level the playing field and start the conversation acknowledging that grief exists in this building, more than ever because of COVID. We have to recognize it and practice self-care.” The community can help by developing its own ritual for staff. For instance, a monthly memorial can give everyone an opportunity to grieve, express their feelings, and share stories about the residents who have died. All disciplines, as well as residents, can be involved so that everyone has a chance to share if they want to. Another option is to plant a bush or tree for every resident who dies from COVID-19. “Have rituals for the pain. There is a real opportunity for growth and to learn from our humanness. We can show that when we get knocked down, we can get back up; and we can appreciate and help each other in the process,” Ms. Daniels said. Team leaders and members alike should be encouraged to help each other. Ms. Daniels suggested, “We need to reach out to those in the depths of despair and seek support when we need it. The energy of friends, colleagues, and loved ones can pull us through when we are feeling zero energy.” She added, “If you need something specific, don’t be afraid to ask.” It is important to remind everyone, starting with the residents and families, how resilient they are. This means acknowledging their strengths and “their remarkable coping mechanisms,” said Ms. Daniels. For example, families may call in a panic, concerned about their loved ones and wanting a detailed account of the steps being taken to assist them. “A quick comment on how you respect their concern and ability to undertake problem-solving to ascertain the situation is appreciated.” The resiliency theory, Ms. Daniels explained, means emphasizing the protective factors that exist within the resident and family — such as social and community support systems, caring relationships, personal strengths, talents, and attributes that remind them of their value, power, and meaning. She said, “This means being respectful yet holding the [individual] accountable, with ethical boundaries, and a belief the [individual] can reach a higher bar.” The pandemic will eventually pass, but it is essential to realize that healing can take time. “Grieving is hard work. We don’t stop grieving because we don’t stop loving,” Ms. Daniels said. “We still struggle with questions. These things will continue to be part of our life narrative, and that’s not a bad thing. Lean into the pain, but don’t do it alone.” Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations.