"It Is Not So Much About What You Will Tell the Patient as It Is About What You Will Allow the Patient to Tell You"-Cicely Saunders
The rapidly evolving field of palliative care seems to increasingly emphasize the "telling" and "doing" and much less about the "being." Overwhelmed palliative care teams and hospice programs struggle to meet the demands of their rapidly increasing census, ever more complex patients and incentives to discharge patients or reduce intensity of care to meet very real financial demands.
Yet in remaining true to the basic tenets of our field, the above words from Dame Cicely Saunders are a reminder of the essence of our work. Where is the balance of meeting the very real and urgent demands of our systems of care versus holding strong to what really matters in serving patients and families at the end of life? What is success in hospice care? What are the true measures of quality in palliative care programs? Have we remained silent long enough for our patients to answer these questions?
It is tempting to cancel an interdisciplinary team meeting in order to accommodate more consults. Reality also strikes as administrators make decisions about retaining chaplains and social workers versus eliminating these valued colleagues in order to increase nurse or physician positions. Where is the balance? And where is the commitment to provide truly interdisciplinary care focused on listening to the patient?
The articles in this issue of the journal are a mirror for the core work of palliative care. Our ethics series paper on requests for nondisclosure, the article on suicide in Korea, and the article on meaning-centered therapy for young adults with cancer represent the essence of our care. The articles on family meetings and family perspectives on end-of-life care remind us of a basic tenet of palliative care as family-focused care. Cicely Saunders' words are equally applicable to our interactions with family caregivers. We are often focused on giving family caregivers information or instructions yet not so skilled at listening closely to their stories. The article by Conway-Orgel and Edlund shares the challenges of extending the palliative care philosophy into neonatal intensive care. The symptom series addresses bone metastasis at the end of life and provides a model of palliative care that truly tends to the whole person in pain.
We read journals to be informed, but also to be inspired. Each article in this issue shares evidence-based practice and represents years of experience by the authors. Each article also reminds us of the "being" of palliative care and why we as nurses work as members of interdisciplinary teams. We hear the voice of the patient most clearly at the bedside, but we can also hear the patient's voice in reading the articles in this issue. Listen closely to these pages; they have much to tell.
Betty Ferrell, PhD, MA, FAAN, FPCN, CHPN
Editor-in-Chief
[email protected]