Living and dying with dignity : an interpretive-systemic framework in Hong Kong

Abstract

Protecting and promoting patients’ and families’ sense of dignity at end-of-life is an indispensable goal, one that palliative care professionals have pursued unceasingly in the modern era. While researchers have made several attempts to uncover the intricate meaning and constitution of dignity and dignified end-of-life care in recent years, their works are solely based upon a Western individualistic paradigm that may not be applicable in Eastern collective societies. This limitation underscores that the existing body of knowledge is missing an important articulation on the Chinese experience. Thus, to fill this important knowledge gap, this study has applied ‘micro’, ‘meso’ and ‘macro’ levels of inquiries to attain a holistic understanding of dignity and dignified end-of-life care in the Hong Kong Chinese context.

Through meaning-oriented interviews with 18 Chinese palliative terminal cancer patients and 18 of their family caregivers, as well as four interpretive-systemic focus groups with 30 key informants involved in a novel end-of-life care pathway programme (N=66), a total of 31 themes that elucidate dignity and dignified end-of-life care have been generated. These 31 themes are carefully organized into 9 categories that reflect the Individual, Familial and Institutional dimensions of dignity at end-of-life.

First, the Individual dimension includes: 1) “Personal Autonomy”, which consists of Regain Control, Self-Sufficiency, Informed Care Decisions and Future Planning; 2) “Family Connectedness”, which consists of Express Appreciation, Achieve Reconciliation, Fulfill Family Obligations and Strengthen Family Bond; and 3) “Spiritual Plasticity”, which consists of Enduring pain, Spiritual Surrender, Moral Transcendence and Transgenerational Unity.

Second, the Familial dimension involves: 1) “Social Agency”, which comprises of Caregiving Resources, Caregiver Assertiveness and Communicative Action; 2) “Family Integrity”, which comprises of Mutual Support, Kinship Involvement and Family Adaptability; and 3) “Filial Compassion”, which comprises of Compassionate Duty, Reciprocal Relationship and Emotional Connection.

Third, the Institutional dimension entails: 1) “Regulatory Empowerment”, which encompasses Interdisciplinary Teamwork, Resource Allocation, Culture Building and Collaborative Policymaking; 2) “Family-Centered Care”, which encompasses Continuity of Care, Family Conference and Care Partnership; and 3) “Collective Compassion”, which encompasses Devotion in Care, Empathic Understanding, and Compassionate Action. These 9 categories and their respected 31 themes are clearly interrelated and embedded within the political, cultural, and spiritual contexts of society, highlighting the intricate interplay of systemic structure and social discourse for promoting dignity at end-of-life. These findings have further led to the development of the ‘Patient-Family Model of Dignified Care’ and the ‘Interpretive-Systemic Framework of Dignity at End-of-Life’. The former provides a new clinical protocol for identifying and evaluating the strengths and weaknesses within the personal, interpersonal and transpersonal functioning of the patient-family dyads in Chinese end-of-life care. The latter offers a public health roadmap for social change that accentuates the necessity for a collective consciousness of compassion in pushing forth the ultimate ideal of living and dying with dignity in Hong Kong.

Based on this body of work, recommendations for patient-family care at end-of-life, expansion of community-based palliative care, and development of palliative long-term-care for ensuring quality and equality in the care of dying patients and their families are discussed.