In today’s The Wall Street Journal, journalist Andrea Petersen writes about “A New Approach for the Sickest Babies.” She describes:
“Doctors and hospitals are changing the way they treat dying babies. Terminally ill infants usually end up in the neonatal intensive care unit, a busy, high-tech environment with an arsenal of life-saving medical equipment. For many, their deaths will be protracted, accompanied by futile attempts at resuscitation and invasive procedures.
But a new movement aims to change that. A cadre of neonatologists and other medical professionals are bringing elements of palliative care and hospice to the tiniest of patients. Such programs focus on the aggressive management of pain and symptoms and attention to the emotional and spiritual aspects of dying. The approach has been available to terminally ill adults and the elderly, but it is only recently that doctors have extended such care to infants and their families. The goal is to allow gravely ill babies to die peacefully, without pain and in their parents’ arms.”
During the mid-1990s, I worked for VITAS Healthcare, the largest hospice company in the US. The hospice movement in the US started to gain steam in the mid-1970s. The National Hospice and Palliative Care Organization (NHPCO) describes “At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. Hospice focuses on caring, not curing and, in most cases, care is provided in the patient’s home.” Hospice can make a big difference to a patient’s quality of life and especially for their families.
I think it is interesting that hospice was included as a Medicare benefit in 1982, and it became one of the earliest and purest forms of managed care. NHPCO states “96% of hospice care is provided at the routine home care level which is reimbursed at approximately $114 per day.” This flat per-diem (adjusted for geographic cost differences) covers all care related to the terminal diagnosis including physician services, nursing care, DME, supplies, medications, homemaker and home health aide services, and a range of social work and psychosocial support services.
Hospice is an important service to people of all ages, and I am glad to see this compassionate care extended to our small and most fragile infants and their families.