A troubling study published earlier this year in the Annals of Internal Medicine reported that patients and their caregivers were more likely to report pain, depression, and periodic confusion during the last year of life in 2010 than in 1998. This worsening trend occurred despite increasingly frequent calls to improve end-of-life care communication and the interim publication of practice guidelines on palliative care for adults from the National Consensus Project for Quality Palliative Care and the American College of Physicians. Although the reasons for underutilization of palliative care are not entirely clear, persistent misconceptions about these services being the equivalent of "giving up" on patients or hastening their death likely play a role.
On the other end of the age spectrum, a Close-ups in the April 1st issue of American Family Physician highlighted the benefits of providing palliative care at the beginning of life: in this case, to a baby with trisomy 13 diagnosed by prenatal genetic testing. The devastated parents testified to the importance of their family physician providing support and guidance throughout the pregnancy and after their child's birth:
She helped us understand the decisions we had to make and helped us express our goals for the care of our unborn daughter. We wanted our daughter to have a comfortable life - for however long she lived - and a natural death. At the same time, we wanted as few medical interventions as possible to avoid unnecessarily prolonging her death or suffering.
Although less well-studied than palliative care in adults, critically ill neonates and infants who received palliative care consultations spent fewer days in intensive care units, received fewer blood draws and invasive interventions, and received more referrals to chaplains and social services than comparable patients with life-limiting diagnoses. Perinatal hospice programs take perinatal palliative care one step further and provide compassionate, multidisciplinary support for parents from the time of prenatal diagnosis through the remainder of pregnancy and their child's birth and death. Clinicians who provide maternity and/or newborn care and would like to learn more about perinatal hospice can consult the website perinatalhospice.org, which lists contact information for more than 200 programs across the United States and internationally.
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This post first appeared on the AFP Community Blog.