clinician on a personal level. “When it came time to withdraw the life support, it was too much for her to watch. She pleaded with us through tears to please be gentle with him, and then left the room, broken. When it was all done, she returned to hold her baby in her arms one final time. It was the strangest act for me, putting her deceased child in her arms, as if I were all at once giving to her a beautiful but most terrible gift, and then leaving her alone to figure out what to do with it. All I could do was whisper, ’Take as much time as you need’” (Sato, 2017, p. 72). Perinatal and Neonatal Palliative Care Despite the medical advances and treatments in neonatology that have improved survival rates, when a neonate is diagnosed with a serious illness, mainly congenital in nature, both perinatal and neonatal palliative care are called upon to prevent and relieve pain and suffering as well as support the needs and choices of the parents (Kilcullen & Ireland, 2017). Perinatal deaths are defined in various ways. Perinatal deaths can include fetal deaths as well as live births with only a brief survival of days or weeks. The definition of perinatal death is “the death of a baby between 22weeks of gestation (or weighing 500g) and 7 days after birth” (Camacho-Ávila & Fernández-Sola, 2019, p. 1). Although preterm births, those less than 37 weeks' gestation, diminished between 2007 and 2014 (10.41% to 9.54%), new data from the Centers for Disease Control and Prevention (CDC; 2021) show they rose for the fifth straight year to 10.23% in 2019. This highlights the need for clinicians who can provide support and comfort to parents when their baby has a life- limiting illness or is born premature or stillborn. This specialized type of palliative care helps to guide the decision-making process to anticipate, prevent, and relieve suffering; choices along the spectrum of this care include pregnancy termination (abortion) to full neonatal resuscitation and treatment (American College of Obstetricians and Gynecologists, 2019). An example of perinatal palliative care is a mother who shared the experience of her pregnancy scan that led to a diagnosis of a chromosomal abnormality called trisomy 18 and of her child being stillborn at 36 weeks’ gestation (Children’s Project on Hospice and Palliative Care [ChiPPS], 2017). Although the chance of a live birth was very slim, nearing the induction date, clinicians discussed with both parents which interventions they wanted if the baby was born alive and was able to come home, arranged for the parents to talk with a child life specialist to understand how to explain the situation to their two-year-old son, assisted in choosing a funeral home, and discussed memory making. After the birth of their dead infant daughter, the parents held their baby the entire day in the hospital, introduced her to extended family, baptized her, gave her a bath, made handprint and footprint molds, and took photos. This advance care planning before birth allowed the parents to spend their time making memories when she was born instead of making difficult decisions (ChiPPS, 2017). Yildiz and Cimete (2017) studied the effects of a grief support program in a hospital neonatal intensive care unit (NICU) in Turkey. Participants in the study were those whose babies in the NICU had a higher risk of dying within one year. In the period before the baby’s death, as part of a neonatal palliative care plan, parents were encouraged to touch their babies and call them by name during every visit. The parents were also given a picture of their baby if desired. After the baby’s death, parents were given a chance to see and embrace the swathed baby in a private room. Follow-up interventions included two phone calls and two home visits to assess the bereavement status of the parents. They were given a brochure that explained ways to cope with stress and a guide that listed common grief reactions and ways to explain loss to children. The interventions from this study can provide guidance for clinicians who work in NICUs to consider caring for those parents whose babies are at high risk of dying (Yildiz & Cimete, 2017). Interventions such as allowing parents to hold the infant, keep the umbilical cord clamp, take photos, keep clothes or foot/handprints, or have the baby
baptized can be helpful in allowing parents to grieve (Camacho- Ávila & Fernández-Sola, 2019). Geriatric Palliative Care While the delivery of palliative care to the older population is not new, geriatric palliative care is an interspecialty collaborative approach that “aims to improve the quality of life of elderly persons facing severe and life-threatening illness near the end of their lives” (Voumard et al., 2019. p. 3). Patients with a primary diagnosis of cancer (32%) had the greatest number of days on palliative care, followed by primary diagnoses of circulatory/heart disease (13.2%) and pulmonary disease (11.3%; Schoenherr et al., 2019). In addition to these diagnoses, dementia, including Alzheimer’s disease, vascular dementia, and dementia with Lewy Bodies, has been steadily increasing (Endsley & Main, 2019). According to Endsley and Main (2019), by 2025, the number of patients with dementia is expected to grow by almost 35% to 7.1 million, with some projections of 16 million by 2050 456). Regardless of etiology, pain is the most common complaint (50%) of palliative care patients (Endsley & Main, 2019, p. 457). This is an important consideration for clinicians who work with geriatric patients and their families to provide quality palliative care. Healthcare Professional Consideration: More specifically, the geriatric palliative care team can help the patient and family understand each stage of the illness; assess and treat symptoms; make choices that will protect the patient’s quality of life; help caregivers establish a daily routine for care; recognize what contributes to troubling behavior; ensure patients have 24-hour support; and help families understand the financial costs of care, including Medicare (CAPC, 2021). Nearly 20 years ago, Beatitudes Campus, an older adult community in Arizona, created a palliative care program for individuals with dementia that focused on overall comfort and well-being. Specifically, Beatitudes Campus maintains that those with dementia should (Comfort Matters, 2021): ● Have access to comfort every day ● Be offered palliative care well in advance of the end of life ● Sleep when tired ● Eat what is appetizing, whenever hungry, by having foods that appeal to them available ● Receive individualized assistance with personal care ● Be engaged in meaningful ways, considering unique interests and lifelong pursuits ● Live in an environment that seeks to promote personal autonomy through balancing sensory, stimulating, and calming events Just as important as addressing individualized comfort and well-being for patients with dementia is addressing the needs of family members while caregiving. According to MacCourt and colleagues (2017), while giving care, family members feel the loss of the person they knew and may begin their bereavement long before the person they are caring for dies. Although the complexities of family members offering practical and emotional support to a patient with dementia have been well documented, there continues to be little information about intervention effectiveness, especially in diverse populations (MacCourt et al., 2017). Kathleen Venema (2018) wrote about her mother, who was challenged by the myriad and unpredictable effects of Alzheimer’s disease: Mom is confined to a wheelchair, often sounds like an animal in pain, must be fed her meals of puréed food, registers only the barest awareness of others around her. Every Friday I find her bent double over the tray attached to her wheelchair. I hold her hands, stroke her face, tell her I love her, and marvel at the relative ease with which I might breach the infinitesimally thin line—incredibly, the still-thinning line—between living and dying. (Venema, K., 2018, p. 304)
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Book Code: PYFL4024
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