Relationships with patients, contacting families key in end-of-life care during COVID-19
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Meaningful end-of-life care efforts during the COVID-19 pandemic included maintaining relationships with isolated patients, connecting patients to families and creating humanistic episodes, according to study results published in CHEST.
“Recent systematic reviews have identified components of good death, such as the absence of physical pain and symptoms,” Mayumi Nishimura, MPH, DrPH, from the department of health informatics at Kyoto University, and colleagues wrote. “Regarding the spiritual aspect of dying, good relationships with others, respected autonomy, a sense of life completion and religious procedures and rituals are important. However, patients with COVID-19 often experience difficulty breathing, uncomfortable treatments, challenges in communication, extreme loneliness, no choice of location and restrictions on cultural and religious rituals. From the perspective of good death studies, the process of dying of COVID-19 is far from a good death.”
In a qualitative study, Nishimura and colleagues analyzed responses from 15 doctors and 18 nurses (majority 30-39 years old; 48% women) from 23 hospitals in 13 Japanese regions to gain an understanding of their efforts/strategies in end-of-life care for patients with COVID-19 and their families in the midst of the pandemic.
Using individual, semi structured, internet and face-to-face interviews, researchers collected responses from various health care providers (HCPs) who reported giving this type of care during the pandemic.
In hearing about the different types of end-of-life care given to these patients, researchers sought to establish the key themes in this care.
The doctors and nurses expressed 51 end-of-life care strategies, of which researchers found four themes/efforts that encapsulate the best ways to care for this patient population: maintaining relationships with patients who are isolated, connecting patients to their families, sharing decision-making in isolation and creating humanistic episodes.
For maintaining relationships with patients who are isolated, doctors and nurses noted that they addressed patients’ loneliness. Efforts to make them feel like they were not alone included listening to them and performing acts of care, such as opening room windows. This theme also involved talking to patients and preventing the patient from dying alone by means of either calling a family member or personally staying with the patient.
Another important component of end-of-life care was keeping patients in contact with their families. Some ways to achieve this effort included helping during conversations between the two parties before intubation, videoconferencing and encouraging families to visit in-person once the HCPs felt good about the hospital’s preventive measures.
Shared decision-making was the third overarching theme reported by doctors and nurses. Key factors in this theme included getting insight on the families’ distress to gain their trust, sharing information with families to help them clearly understand the patients’ medical condition, finding out patients’ hidden preferences and delivering compassionate care that the families can see.
Researchers noted that through ICU diaries, families saw that the doctors and nurses truly cared about their family member.
Lastly, researchers found that creating humanistic episodes was a major factor in this type of care, specifically for COVID-19 patients since their families most likely had limited memories of their loved ones due to less visiting access and fast disease progression. When caring for the families after death, sharing ICU diaries and creating arrangements according to cultural funerary procedures were a part of meaningful care.
Additionally, several doctors and nurses reported letting the families see and touch the deceased through safe practices, such as masks, gloves and personal protective equipment.
“As patients with COVID-19 died in isolation, HCPs used existing and new tools to link the concepts of a good death with care practices,” Nishimura and colleagues wrote.
They added, “End-of-life training for HCPs and establishing an end-of-life care support system as a normal part of care are urgent issues in Japan.”
This study by Nishimura and colleagues adds significant findings to literature on end-of-life care during the COVID-19 pandemic and highlights important practices in this care that extend further than Japan, according to an accompanying editorial by Sarah K. Andersen, MD, clinical instructor at the University of Pittsburgh School of Medicine and NIH postdoctoral research fellow at The Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, and Yael Schenker, MD, MAS, director of the Palliative Research Center at the University of Pittsburgh.
“Although this study is situated within a particular country and cultural context, the importance of maintaining human connection at end of life — for patients, families and clinicians — is universal,” Andersen and Schenker wrote. “As clinicians, we must continue to reflect on how to provide meaningful end-of-life care for patients under challenging circumstances. In planning for future pandemics, health systems across the globe must ensure that the humanistic aspects of end-of-life care are maintained through use of innovative technologies and policy commitments that prioritize family visitation and spiritual connection.”