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COVID-19 has affected healthcare in profound and unprecedented ways, distorting the experiences of patients and healthcare professionals (HCPs) alike. One area that has received little attention is how COVID-19 affected HCPs caring for dying patients. The goal of this study was to examine the experiences of HCPs working with dying patients during the COVID-19 pandemic. Between July 2020-July 2021, we recruited HCPs (N = 25) across Canada. We conducted semi-structured interviews, using a qualitative study design rooted in constructivist grounded theory methodology. The core themes identified were the impact of the pandemic on care utilization, the impact of infection control measures on provision of care, moral distress in the workplace, impact on psychological wellbeing, and adaptive strategies to help HCPs manage emotions and navigate pandemic imposed changes. This is the first Canadian study to qualitatively examine the experiences of HCPs providing care to dying patients during the COVID-19 pandemic. Implications include informing supportive strategies and shaping policies for HCPs providing palliative care.

Authors: Lily Pankratz, Gagan Gill, Salina Pirzada, Kelsey Papineau, Kristin Reynolds, Christian La Riviere, James M Bolton, Jennifer M Hensel, Kendiss Olafson, Maia S Kredentser, Renée El-Gabalawy, Tim Hiebert, Harvey Max Chochinov

Journal: Death studies

Date published: 2023 Nov 8

Reference:

Pankratz L, Gill G, Pirzada S, Papineau K, Reynolds K, Riviere C, Bolton JM, Hensel JM, Olafson K, Kredentser MS, El-Gabalawy R, Hiebert T, Chochinov HM. “It took so much of the humanness away”: Health care professional experiences providing care to dying patients during COVID-19. Death Stud. 2023 Nov 8:1-13. doi: 10.1080/07481187.2023.2266639. Epub ahead of print. PMID: 37938174.

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.

Authors: Rachel A Hadler Seth Weeks, William E Rosa, Stephanie Choate, Matthew Goldshore, Miguel Julião, Blake Mergler, Judith Nelson 9, Jesse Soodalter, Caywin Zhuang, Harvey Max Chochinov

Journal: Journal of palliative medicine

Date published: 2023 Oct 13

Reference:

Hadler RA, Weeks S, Rosa WE, Choate S, Goldshore M, Julião M, Mergler B, Nelson J, Soodalter J, Zhuang C, Chochinov HM. Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice. J Palliat Med. 2023 Oct 13. doi: 10.1089/jpm.2023.0544. Epub ahead of print. PMID: 37831928.

Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools.

Methods: The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool.

Results: Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified “family relationships,” “global pain,” and “family roles and accomplishments” as being of most importance to patients.

Significance of results: The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient-caregiver and patient-HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.

Authors: Andrea Bovero, Francesca Cotardo, Alessandra Loreta Cito, Alexa Victoria Pidinchedda, Sara Pesce, Harvey Max Chochinov, Sara Carletto

Journal: Palliative & supportive care

Date published: 2023 Sep 6

Reference:

Bovero A, Cotardo F, Cito AL, Pidinchedda AV, Pesce S, Chochinov HM, Carletto S. The Italian versions of the This Is ME Questionnaire and the Patient Dignity Question: Understanding personhood and supporting dignity in patients with terminal cancer. Palliat Support Care. 2023 Sep 6:1-7. doi: 10.1017/S1478951523001281. Epub ahead of print. PMID: 37671583.

How decisions are made and patients cared for are often guided by the Golden Rule, which would have us treat patients as we would want to be treated in similar circumstances. But when patients’ lived experiences and outlooks deviate substantively from our own, we stop being a reliable barometer of their needs, values, and goals. Inaccurate perceptions of their suffering and our personal biases may lead to distorted compassion, marked by an attitude of pity and therapeutic nihilism. In those instances, The Platinum Rule, which would have us consider doing unto patients as they would want done unto themselves, may be a more appropriate standard for achieving optimal person-centered care. This means knowing who patients are as persons, hence guiding treatment decisions and shaping a tone of care based on compassion and respect.

Authors: Chochinov HM

Journal: Journal of palliative medicine

Date published: 2022 May 18

Reference:

Chochinov HM The Platinum Rule: A New Standard for Person-Centred Care. J Palliat Med. 2022 Feb 25. doi: 10.1089/jpm.2022.0075. Epub ahead of print. PMID: 35230173

https://www.liebertpub.com/doi/10.1089/jpm.2022.0075