Basics of qualitative research: Grounded theory procedures and techniques

Over the past 20 years, critical care has matured in a myriad of ways resulting in dramatically higher survival rates for our sickest patients. For millions of new survivors comes de novo suffering and disability called "the postintensive care syndrome." Patients with postintensive care syndrome are robbed of their normal cognitive, emotional, and physical capacity and cannot resume their previous life. The ICU Liberation Collaborative is a real-world quality improvement initiative being implemented across 76 ICUs designed to engage strategically the ABCDEF bundle through team- and evidence-based care. This article explains the science and philosophy of liberating ICU patients and families from harm that is both inherent to critical illness and iatrogenic. ICU liberation is an extensive program designed to facilitate the implementation of the pain, agitation, and delirium guidelines using the evidence-based ABCDEF bundle. Participating ICU teams adapt data from hundreds of peer-reviewed studies to operationalize a systematic and reliable methodology that shifts ICU culture from the harmful inertia of sedation and restraints to an animated ICU filled with patients who are awake, cognitively engaged, and mobile with family members engaged as partners with the ICU team at the bedside. In doing so, patients are "liberated" from iatrogenic aspects of care that threaten his or her sense of self-worth and human dignity. The goal of this 2017 plenary lecture at the 47th Society of Critical Care Medicine Congress is to provide clinical ICU teams a synthesis of the literature that led to the creation of ICU liberation philosophy and to explain how this patient- and family-centered, quality improvement program is novel, generalizable, and practice changing.

The ABCDEF Bundle: Science and Philosophy of How ICU Liberation Serves Patients and Families.

End-of-life care in the intensive care unit: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine.

Calls to legalize physician-assisted suicide have increased and public interest in the subject has grown in recent years despite ethical prohibitions. Many people have concerns about how they will die and the emphasis by medicine and society on intervention and cure has sometimes come at the expense of good end-of-life care. Some have advocated strongly, on the basis of autonomy, that physician-assisted suicide should be a legal option at the end of life. As a proponent of patient-centered care, the American College of Physicians (ACP) is attentive to all voices, including those who speak of the desire to control when and how life will end. However, the ACP believes that the ethical arguments against legalizing physician-assisted suicide remain the most compelling. On the basis of substantive ethics, clinical practice, policy, and other concerns articulated in this position paper, the ACP does not support legalization of physician-assisted suicide. It is problematic given the nature of the patient-physician relationship, affects trust in the relationship and in the profession, and fundamentally alters the medical profession's role in society. Furthermore, the principles at stake in this debate also underlie medicine's responsibilities regarding other issues and the physician's duties to provide care based on clinical judgment, evidence, and ethics. Society's focus at the end of life should be on efforts to address suffering and the needs of patients and families, including improving access to effective hospice and palliative care. The ACP remains committed to improving care for patients throughout and at the end of life.

Ethics and the Legalization of Physician-Assisted Suicide: An American College of Physicians Position Paper

Compassion and collaborative practice are individually associated with high quality healthcare. When combined in a compassionate collaborative care (CCC) practice framework, they are reported to improve health, strengthen care provision, and control health costs. Little is known about how to integrate and measure CCC, yet it is fundamentally applied in palliative and end-of-life care settings. This study aimed to identify quality indicators of CCC by systematically reviewing and synthesizing the current state of the palliative and end-of-life care literature. An integrative review of the palliative and end-of-life care literature was conducted using Whittemore and Knafl’s method. Donabedian’s healthcare quality framework was applied in the data analysis phase to organize and display the data. The analysis involved an iterative process that applied a constant comparative method. The final literature sample included 25 articles. Patient and family-centered care emerged as a primary structure for CCC, with overarching values including empathy, sharing, respect, and partnership. The analysis revealed communication, shared decision-making, and goal setting as overarching processes for achieving CCC at end-of-life. Patient and family satisfaction, enhanced teamwork, decreased staff burnout, and organizational satisfaction are exemplars of outcomes that suggest high quality CCC. Specific quality indicators at the individual, team and organizational levels are reported with supporting exemplar data. CCC is inextricably linked to the inherent values, needs and expectations of patients, families and healthcare providers. Compassion and collaboration must be enacted and harmonized to fully operationalize and sustain patient and family-centered care in palliative and end-of-life practice settings. Towards that direction, the quality indicators that emerged from this integrative review provide a two-fold application in palliative and end-of-life care. First, to evaluate the existing structures, processes, and outcomes at the patient-family, provider, team, and organizational levels. Second, to guide the planning and implementation of team and organizational changes that improve the quality delivery of CCC.

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Compassionate collaborative care: an integrative review of quality indicators in end-of-life care

Background Dying in the complex, efficiency-driven environment of the intensive care unit can be dehumanizing for the patient and have profound, long-lasting consequences for all persons attendant to that death. Objective To bring peace to the final days of a patient's life and to ease the grieving process. Design Mixed-methods study. Setting 21-bed medical-surgical intensive care unit. Participants Dying patients and their families and clinicians. Intervention To honor each patient, a set of wishes was generated by patients, family members, or clinicians. The wishes were implemented before or after death by patients, families, clinicians (6 of whom were project team members), or the project team. Measurements Quantitative data included demographic characteristics, processes of care, and scores on the Quality of End-of-Life Care-10 instrument. Semistructured interviews of family members and clinicians were transcribed verbatim, and qualitative description was used to analyze them. Results Participants included 40 decedents, at least 1 family member per patient, and 3 clinicians per patient. The 159 wishes were implemented and classified into 5 categories: humanizing the environment, tributes, family reconnections, observances, and "paying it forward." Scores on the Quality of End-of-Life Care-10 instrument were high. The central theme from 160 interviews of 170 persons was how the 3 Wishes Project personalized the dying process. For patients, eliciting and customizing the wishes honored them by celebrating their lives and dignifying their deaths. For families, it created positive memories and individualized end-of-life care for their loved ones. For clinicians, it promoted interprofessional care and humanism in practice. Limitation Impaired consciousness limited understanding of patients' viewpoints. Conclusion The 3 Wishes Project facilitated personalization of the dying process through explicit integration of palliative and spiritual care into critical care practice. Primary funding source Hamilton Academy of Health Science Research Organization, Canadian Intensive Care Foundation.

Personalizing Death in the Intensive Care Unit: The 3 Wishes Project: A Mixed-Methods Study

This article describes the efforts of a multidisciplinary team to humanize a difficult process by eliciting and fulfilling some simple wishes of dying patients and their families.

Personalizing Death in the Intensive Care Unit: The 3 Wishes Project

Rationale: The austere setting of the intensive care unit (ICU) can suppress expressions of spirituality.Objectives: To describe how family members and clinicians experience and express spirituality during the dying process in a 21-bed medical–surgical ICU.Methods: Reflecting the care of 70 dying patients, we conducted 208 semistructured qualitative interviews with 76 family members and 150 clinicians participating in the Three Wishes Project. Interviews were recorded and transcribed verbatim. Data were analyzed by three investigators using qualitative interpretive description.Measurements and Main Results: Participants characterize dying as a spiritual event. Spirituality is an integral part of the life narrative of the patient before, during, and after death. Experiences and expressions of spirituality for patients, families, and clinicians during end-of-life care in the ICU are supported by eliciting and implementing wishes in several ways. Eliciting wishes stimulates conversations for people of divers...

Experiences and Expressions of Spirituality at the End of Life in the Intensive Care Unit

Objective The Word Cloud is a frequent wish in the 3 Wishes Project developed to nurture peace and ease the grieving process for dying critically ill patients. The objective was to examine whether Word Clouds can act as a heuristic approach to encourage a narrative orientation to medicine. Narrative medicine is an approach which can strengthen relationships, compassion and resilience. Design Word Clouds were created for 42 dying patients, and we interviewed 37 family members and 73 clinicians about their impact. We conducted a directed qualitative content analysis, using the 3 stages of narrative medicine (attention, representation, affiliation) to examine the narrative medicine potential of Word Clouds. Results The elicitation of stories for the Word Cloud promotes narrative attention to the patient as a whole person. The distillation of these stories into a list of words and the prioritisation of those words for arrangement in the collage encourages a representation that did not enforce a beginning, middle or end to the story of the patient9s life. Strong affiliative connections were achieved through the honouring of patients, caring for families and sharing of memories encouraged through the creation, sharing and discussion of Word Clouds. Conclusions In the 3 Wishes Project, Word Clouds are 1 way that families and clinicians honour a dying patient. Engaging in the process of making a Word Cloud can promote a narrative orientation to medicine, forging connections, making meaning through reminiscence and leaving a legacy of a loved one. Documenting and displaying words to remember someone in death reaffirms their life.

https://spcare.bmj.com/content/bmjspcare/early/2016/11/24/bmjspcare-2016-001179.full.pdf

Robert Sheppard

Papers

Personalizing Death in the Intensive Care Unit: The 3 Wishes Project: A Mixed-Methods Study

Personalizing Death in the Intensive Care Unit: The 3 Wishes Project

Experiences and Expressions of Spirituality at the End of Life in the Intensive Care Unit

Narrative medicine and death in the ICU: word clouds as a visual legacy