The Evolution of Hospice Care: Expanding Access with the Concurrent Care for Children Provision
By Billie Winegard, MD MPH and Wendy Sturtz, MD
“We’re not ready to give up. We can’t give up if there’s a chance.”
Their son had metastatic cancer. His life expectancy was less than 6 months, and he was suffering with worsening pain and shortness of breath due to his disease. As his condition progressed, he needed frequent medical assessments for adjustments of the medications used to manage his symptoms, but the trips to the clinic were difficult for him and his family to manage as they lived some distance away from the hospital. Admission to the hospital also went against their goal of keeping their family together at home. However, when presented with the option of hospice to minimize his suffering and help him to maintain as high a quality of life as possible with close monitoring and care, the family was unwilling to give up the option of seeking treatments that might provide a cure.
The development of hospice care in the United States is relatively young and still evolving. Dame Cicely Saunders, who created the first modern hospice in a London suburb, first brought the idea of specialized care for the dying to the U.S. in 1963 (National Hospice and Palliative Care Organization, 2015). Almost a decade later, the first U.S. hospice was founded in 1974, and in the late 1970s, a task force of the U.S. Department of Health, Education, and Welfare determined that the hospice movement should receive federal support as it provided “more humane care for Americans dying of terminal illness while possibly reducing costs” (National Hospice and Palliative Care Organization, 2015). Since the creation of the Medicare hospice benefit in 1982, coverage for hospice care has expanded and is now provided under Medicare, Medicaid, and most private insurance plans and managed care organizations (“NHPCO’s facts and figures: Hospice care in America”, 2015).
The hospice model allows for a holistic approach model of care provided by an interdisciplinary team (“NHPCO’s facts and figures: Hospice care in America”, 2015). This team includes, at a minimum, a hospice nurse, social worker, chaplain, physician, and volunteers. The team members make regular visits and are available 24 hours a day, seven days a week to: manage the patient’s pain and symptoms; assist with the emotional, psychosocial, and spiritual aspects of dying; provide medications and medical supplies and equipment; and provide bereavement care and counseling to surviving family. Palliative care also has the goal of maximizing quality of life for patients with serious illnesses (Center to Advance Palliative Care). It is provided by an interdisciplinary medical team at any stage of illness to provide an extra layer of support.
For children with life-limiting or life-threatening conditions, palliative care can be initiated at the time of diagnosis to provide symptom management, address psychosocial and spiritual needs, and assist with goals of care (Keim-Malpass et al., 2013). However, eligibility for hospice services, and the expansion of services that it offers, historically has had two requirements whether the patient is an adult or a child. The first was that the patient had a life expectancy of no more than six months; the second was that all life-prolonging, curative, or disease-directed care be discontinued (Lindley, 2011). Families in such hard situations were faced with the very difficult decision of whether to discontinue therapies such as chemotherapy, radiation therapy, dialysis, and medications such as antiretroviral and transplant rejection therapies. Private duty nursing services, necessary for the safe care of many medically complex and technology-dependent children, would also have to be discontinued with the transition to hospice care (Bettini, 2013; Miller & Feudtner, 2013; Miller et al., 2012).
Forcing parents to make these nearly impossible decisions was alleviated with the passage of the Patient Protection and Affordable Care Act (ACA) of 2010 (Govtrack, 2009; Lindley et al., 2014). Included within Section 2302 of this large piece of legislation is the Concurrent Care of Children Requirement (CCCR). This provision was written in response to the growing voice of those who provide end of life care asserting that hospice eligibility requirements were preventing many patients, in particular children, from receiving adequate care at the end of their lives. It makes an allowance for terminally ill patients under the age of 21 who are enrolled in Medicaid or Children’s Health Insurance Programs (CHIP) to receive both curative and hospice care thereby expanding access to the benefits of hospice care for children (Lindley, 2011). This legislation more aligns with basic principles of palliative medicine which recognize an individual person’s goals may include both pursuing life-prolonging disease-directed treatments while at the same time focusing on the best quality of life with thoughtful attention to emotional, social and spiritual aspects of care.
Enactment of the CCCR has occurred gradually. Almost 3 years after its passage, only 31 states had put the legislation into action with Delaware beginning implementation in 2011 (Lindley et al., 2014). While no economic, political, or legal factors have been shown to affect states’ implementation, several clinical challenges have been identified (Lindley et al., 2014; Miller et al., 2012). These challenges include: knowledge of end-of-life care for this population; practitioner concerns about adopting a palliative care model of care with focus on comfort; coordination of care between hospice providers and other caregivers; reimbursement for services and durable medical equipment that could not be provided under the hospice per diem reimbursement model; and insurance coverage.
There is a pervasive belief in our society that children should not die. Because of this and common misconceptions, pediatric hospice referrals in particular have been viewed negatively- that there has been a failure or that the family or medical team has given up hope (Neeley, 2009). The goal of palliative and hospice care is not to take away hope but to provide care to ensure a good life no matter how long that life may be. With the passage of the CCCR, an important step toward removing barriers to pediatric referrals for expert care to relieve psychosocial, spiritual as well as physical suffering has been taken.
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