When a Middle Tennessee family faces the devastating illness of a child, an Alive Hospice program designed for infants and children is there to help. Founded last year and dubbed Alive Monarchs, the program boasts a team of two pediatricians, other clinical professionals, social workers and chaplains specially prepared to help manage one of life's most difficult situations.

 

While Alive Hospice has offered pediatric hospice care for years, with the establishment of Alive Monarchs, palliative and perinatal care were added, thus offering what Amy Brin called "three tiers of service. We organized it like that so we could follow these patients anywhere on their continuum of disease."

 

A nurse practitioner with a pediatric specialty, Brin is Alive Monarchs' clinical director. She said the program's name was "a rhetorical way" to navigate the negatively of words such as hospice. "When we talk to children about death and the dying process, we use a lot of images from nature. Obviously, the butterfly is one of those we talk about, the whole life process and metamorphosis," she said. Alive Monarchs is one of the few programs of its kind in the nation.

 

The hospice care is traditional, delivered either at the home or in one of Alive Hospice's three inpatient facilities, all equipped to handle pediatric patients. The palliative service, on the other hand, is more consultative in nature, and Brin said much of the service is delivered at Vanderbilt Children's Hospital. An oncologist, for example, may call on Alive Monarchs to help manage a patient's pain or other symptoms or to facilitate difficult conversations about advanced-care planning. "Palliative care is for anyone living with a life-threatening diagnosis – and we always emphasize living with. It's a way that we have created early access to our services," Brin said, noting that evidence shows that pain relief and symptom management help patients live longer.

 

Brin acknowledged that, when it comes to relieving pain in the smallest children who can't give verbal feedback, the job is more challenging. "There is a lot of discussion about that in pediatric literature," she said. "The assessments that we do for pain are different than the assessments we do for an adult. We have nonverbal cues that we use, as well as really monitoring the vitals to determine if our pain management is being therapeutic."

 

Alive Monarchs' perinatal service answers a need in the region, where psychosocial support has been limited for families facing a tragic pregnancy prognosis. The social worker and chaplain team up with the mother's perinatologist to offer services that include anticipatory grief counseling or help developing a birth plan "to give that family a little bit more control, if you will, in a very uncontrolled situation," Brin said. Babies born with severely limited life expectancy, however, sometimes live longer than anticipated – two weeks rather than two days. Typically, those infants would remain in the neonatal intensive care unit. Yet, Alive Monarchs offers another alternative. "We can give the family the option of, immediately at birth, signing up for hospice, and we bring the baby home and are able to support the family for however long the baby has," Brin said.

 

Alive Monarchs typically cares for patients age 18 or under, yet the program already has cared for young adults in their early 20s if the referral is from a pediatric provider. "Sometimes there are psychosocial nuances that fit a pediatric care team more so than an adult team," Brin said.

 

In calendar year 2008, Alive Monarchs served 31 patients in hospice, 50 in palliative care and 11 in its perinatal program.