By Elaine Chen, MD
Associate Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Section of Palliative Medicine, Rush University Medical Center, Chicago
SYNOPSIS: Using a multiple-source approach, this study showed that when given a voice, patients at high risk of dying in the intensive care unit express variable logistical, spiritual, physical, psychological, and existential concerns that clinicians should consider and address.
SOURCE: Kentish-Barnes N, Poujol AL, Banse E, et al. Giving a voice to patients at high risk of dying in the intensive care unit: A multiple source approach. Intensive Care Med 2023;49:808-819.
Research into end-of-life care (EOLC) practices and family interactions in the intensive care unit (ICU) has increased in recent years to improve the quality of death and dying, with significant improvement in areas of symptom management and communication with families. However, there remains a gap in research about the needs and experiences of patients themselves. In this study, the authors aimed to develop a list of concerns important to critically ill, conscious patients at high risk of death.
In this qualitative study out of France, the authors used a multiple-source approach to elicit concerns of patients at high risk of death in the ICU from five different types of sources. Source 1 was a literature search for specific terms, which yielded 45 articles out of 3,037 screened, leading to 135 concerns. Source 2 was an invitation to published physician and nurse experts in ICU EOLC to list specific concerns that they believed patients would have; this yielded 280 concerns. Source 3 had physicians and nurses working in six participating ICUs write down questions and preoccupations expressed by patients at high risk of death in a real-time manner over six months. Ninety nurses and 199 physicians from 11 ICUs collected 289 concerns. For sources 4 and 5, in-depth qualitative interviews were held between the subjects and researchers. These interviews were audio-recorded, transcribed, and anonymized. For source 4, 17 family members of patients at high risk of dying in two ICUs elicited 250 concerns, and for source 5, 15 conscious patients at high risk of dying from five ICUs elicited 341 concerns. These total concerns initially were classified into seven domains with 41 sub-domains, then merged into 28 questions, and lastly into a final list of 15 preoccupations and questions.
The final 15 questions expressed concerns about trusting the healthcare team, loved ones suffering because of the patient’s illness, goals of care, preoccupation with physical and psychological symptoms, feelings of regret and unfairness, fear of being isolated and a need for connection, not wanting to be dependent on others, a need for dignity and for personal choices to be respected, questions about death and what will happen, the need to be in a soothing environment, and worry about loved ones after the patient dies.
This study is the first to elicit a list of concerns important to patients at high risk of dying in the ICU, which uses thorough qualitative multi-modal data collection methods for a population that is very difficult to study because of challenges with consciousness, consent, and complexity of research training. Questions of isolation, loneliness, connectedness, saying good-bye, burden on family, fear of abandonment, desire for dignity, and variable spiritual and existential perspectives are highlighted. Participating patients felt safe in expressing these concerns and questions, so the authors suggested that clinicians should feel empowered to initiate discussions about end-of-life concerns with patients, using the list of concerns to guide discussion.
The authors noted that the number of qualitative interviews was limited and that this study was localized to France during various phases of the COVID-19 pandemic spanning February 2020 through May 2022. They encouraged further study of a communication strategy based on this list of concerns to confirm that it improves the quality of death and dying.
COMMENTARY
Death and dying are hard to study, particularly in the ICU, and particularly in patients themselves. Caring for dying patients also is challenging for all involved, and clinicians may lack sufficient training, time, or comfort in communicating with the dying patient and their family. We often think first of the qualitative, spiritual, and existential needs of the families, since many ICU patients are unable to express those needs. This study highlights that patients do think about death during the time when they are at high risk of dying, and we as clinicians might be able to help by eliciting these concerns early rather than avoiding such discussions. Recognizing that randomized controlled trials providing mortality benefit are by nature impossible in dying patients, I hope that additional research will come from this study to provide further guidance and education into methods to help address these patient concerns. In the meantime, I encourage all clinicians to take the time to ask patients about their thoughts and concerns about death and to spend time listening to patients’ responses. So doing can help us, the clinicians, connect with patients, assuage their fears, and build trust. This list of concerns may be used to guide discussion if patients initially are at a loss to what questions to ask. Taking time to help patients prepare for death is challenging, but can be rewarding for all parties and help clinicians provide more compassionate care in the ICU.1
REFERENCE
- Curtis JR, Levy MM. Providing compassionate care in the ICU. Am J Respir Crit Care Med 2022;205:990-991.
