Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, ON, Canada.
Palliat Med. 2012 Jan;26(1):72-9. doi: 10.1177/0269216311407694. Epub 2011 Jun 22.
Adults with congenital heart disease represent a growing patient population. Notwithstanding dramatic improvements in survival and life expectancy over recent decades, many of these patients remain at risk of premature death from progressive heart disease and would benefit from the principles of palliative and end-of-life care. Data on end-of-life care in this patient group are, however, lacking. We report a retrospective study of 48 patients with congenital heart disease who died while admitted to our hospital (mean age at death 37 ± 14 years). We describe circumstances of death, end-of-life discussions, and the provision of end-of-life care. The majority of patients had complex congenital heart disease and were considered to be in the end stage of their disease. Despite this, only a minority of patients had documented end-of-life discussions prior to their terminal admission and most received continuing aggressive medical treatment up to their demise. Advanced palliative and end-of-life care strategies should be developed for and provided to this group of patients, with the dual aims of reduction of unwarranted therapies and enhancement of the quality of death and dying.
先天性心脏病患者是一个日益增长的患者群体。尽管近几十年来生存和预期寿命有了显著提高，但许多患者仍面临进展性心脏病导致的过早死亡风险，他们将从姑息治疗和临终关怀原则中受益。然而，关于该患者群体的临终关怀数据仍然缺乏。我们报告了一项对 48 名在我院住院期间死亡的先天性心脏病患者的回顾性研究（死亡时的平均年龄为 37 ± 14 岁）。我们描述了死亡情况、临终讨论以及临终关怀的提供情况。大多数患者患有复杂的先天性心脏病，被认为处于疾病的终末期。尽管如此，只有少数患者在终末期入院前有记录的临终讨论，大多数患者在死亡前仍接受持续的积极医疗治疗。应针对这组患者制定并提供先进的姑息治疗和临终关怀策略，其双重目的是减少不必要的治疗，并提高死亡和濒死的质量。
