Change is in the air—and I don’t just mean the arrival of spring. The current national focus on health care is clearly evident from many quarters, including policy makers, health care institutions, and clinical staff. In addition to the discussion on health care coverage, there is an increasing emphasis on patient-centered care. As a result, we have before us a unique opportunity to assure the inclusion of survivorship and end-of-life care as formal parts of the health care continuum.
Two articles in this issue present options for improving the way health care is delivered for individuals who may live many years and for individuals whose lives will soon end.
As Maryjo Prince-Paul observes, though patients eligible for hospice care are any who have no more than 6 months of remaining life, less than one-third receive hospice care and many are referred when it is too late to derive any meaningful quality of life benefit. That is most unfortunate since studies show that patients who die receiving hospice care have symptoms better controlled and their families describe a better experience.
In addition, for the poor, 44 states in the US currently have a Medicaid hospice benefit, and many hospices have funding that permits them to offer care free of charge or at reduced rates. The family is also at the center of hospice care and their psychosocial and practical concerns can be addressed for a 1-year period after the death of their loved one, through hospice bereavement-support programs.
Prince-Paul notes most hospice care is provided at home and adds that many hospice programs offer interdisciplinary services ranging from on-site nursing assistance or homemaker services to physical and expressive (art, music) therapies. Key to the success of home hospice is the phone accessibility of a trained hospice team member throughout the day to provide reassurance to patients.
Wendy Landier, in writing on models of survivorship care, emphasizes that oncology nurses are uniquely qualified as leaders in defining survivorship care because of their professional focus on health promotion, supportive care, and sequelae management. Even with core common elements, survivorship care, she offers, must be individualized given the wide variation in pre-existing comorbidities and in the potential physical, psychological, and spiritual sequelae of treatment. Naturally, for any model to succeed, Landier emphasizes, care must be well coordinated and comprehensive.
To determine the optimal delivery of survivorship services, many care models are being developed and evaluated with an eye towards tailoring them to meet the needs of the unique patient population and the health care setting. Much work is still needed, however (as has already occurred with hospice care), to secure reimbursement for these needed services and then to assure their incorporation into routine oncology care.
For nurses, the responsibility and privilege of helping patients to “survive well” and to “die well” extends beyond the bedside and the clinic setting. It includes educating ourselves about care standards, being informed about state and national forums for focusing on these phases of care, understanding the financial underpinnings (or lack thereof) for these services, and planning to be part of the needed changes in the delivery of cancer care to assure that patients live their lives as richly as possible, whether their remaining time is measured in days or in decades. This is change we need and change we can make happen.
—Mary McCabe, RN, MA