Abstract
The field of pediatric cardiology has witnessed major changes over the past few decades
that have considerably altered patient outcomes, including decreasing mortality rates
for many previously untreatable conditions. Despite this, some pediatric cardiology
programs are increasingly choosing to partner with their institutional palliative
care teams. Why is this? The field of palliative care also has experienced significant
shifts over a similar period of time. Today’s palliative care is focused on improving
quality of life for any patient with a serious or life-threatening condition, regardless
of where they might be on their disease trajectory. Research has clearly demonstrated
that improved outcomes can be achieved for a variety of patient cohorts through early
integration of palliative care; recent evidence suggests that the same may be true
in pediatric cardiology. All pediatric cardiologists need to be aware of what pediatric
palliative care has to offer their patients, especially those who are not actively
dying. This manuscript reviews the evolution of palliative care and provides a rationale
for its integration into the care of children with advanced heart disease. Readers
will gain a sense of how and when to introduce palliative care to their families,
as well as insight into what pediatric palliative care teams have to offer. Additional
research is required to better delineate optimal partnerships between palliative care
and pediatric cardiology so that we may promote maximal quality of life for patients
concurrently with continued efforts to push the boundaries of quantity of life.
Résumé
Au cours des dernières décennies, le domaine de la cardiologie pédiatrique a connu
des changements majeurs, qui ont considérablement modifié l’évolution de l’état de
santé des patients, notamment la diminution des taux de mortalité de plusieurs maladies
auparavant non traitables. Malgré cela, certaines équipes des programmes de cardiologie
pédiatrique choisissent de plus en plus à s’associer aux équipes des soins palliatifs
de leur établissement. Pourquoi en est-il ainsi? Le domaine des soins palliatifs a
aussi subi des changements significatifs au cours de la même période. Les soins palliatifs
actuels portent principalement sur l’amélioration de la qualité de vie de tout patient
atteint d’une maladie sérieuse ou qui met en danger sa vie, indépendamment où ils
en étaient dans leur trajectoire de la maladie. La recherche a clairement démontré
qu’il est possible d’améliorer l’évolution de l’état de santé d’un grand nombre de
cohortes de patients en intégrant les soins palliatifs de façon précoce; il ressort
de données probantes récentes qu’il peut en être de même en cardiologie pédiatrique.
Tous les cardiologues-pédiatres doivent prendre conscience de ce que les soins palliatifs
en pédiatrie ont à offrir à leurs patients, particulièrement à ceux qui ne se meurent
pas. Ce manuscrit passe en revue l’évolution des soins palliatifs et fournit une justification
pour son intégration aux soins des enfants atteints d’une cardiopathie avancée. Les
lecteurs comprendront comment et quand aborder les soins palliatifs avec leurs familles,
et auront un aperçu de ce que les équipes de soins palliatifs en pédiatrie ont à offrir.
D’autres recherches sont nécessaires pour mieux définir les partenariats optimaux
entre les soins palliatifs et la cardiologie pédiatrique de façon à ce que nous favorisions
la qualité de vie maximale des patients parallèlement à des efforts continus pour
repousser les limites de la quantité de vie.
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Article info
Publication history
Published online: May 10, 2020
Accepted:
April 27,
2020
Received:
January 27,
2020
Footnotes
See page 1048 for disclosure information.
Identification
Copyright
© 2020 Canadian Cardiovascular Society. Published by Elsevier Inc. All rights reserved.
