Respites are pre-planned stays in facilities (e.g., inpatient units or SNFs) which can occur under the following circumstances: • Caregivers who may be suffering from physical or emotional exhaustion from taking care of a patient around the clock. • Caregivers who would like to attend a family event such as a graduation, wedding, or funeral. • Caregivers who become ill and cannot take care of the patient. 20 4. General inpatient care: When the patient develops uncontrolled acute symptoms or a medical issue which cannot be resolved in the home or with continuous care, general inpatient care must be provided by the hospice. These acute symptoms include issues such as • uncontrolled pain and/or agitation; • uncontrolled seizures; • uncontrolled nausea and vomiting; • unmanageable dyspnea, i.e., shortness of breath; • complex wound care; and/or • minor comfort care procedures, such as paracentesis, i.e., removing fluid from the abdominal cavity. 21
Hospice Medicare Benefit
• Bereavement counselors facilitate support groups, train bereavement volunteers, and design and distribute bereavement material to families. Following the patient’s death, bereavement support is made available to caregivers, families, and friends for 13 months. • Volunteer coordinators administer and develop the volunteer programs for each hospice. The coordinators recruit, train, and assign volunteers to hospice patients. • Other members of the hospice team can include counselors, physical and occupational therapists, speech- language pathologists, homemakers, and volunteers. BEFORE MOVING ONTO THE NEXT SECTION, PLEASE COMPLETE CASE STUDY 2 ON THE NEXT PAGE. Population specific palliative care
Sources of payment for hospice care include private health insurance, veteran’s benefits, the patient’s own income or family support, charitable donations, Medicaid, or Medicare. Medicare patients have a specific Hospice Medicare Benefit (HMB) that reimburses the hospice on a per diem basis. The hospice provides clinical support from the interdisciplinary team, as well as durable medical equipment and coverage of medications associated with the terminal illness. Approximately 85 percent of hospice reimbursement/payment comes from the HMB. 20 The HMB does not cover curative treat- ments or medications, care from specialists not approved by the hospice provider, or room and board for hospice care provided in a patient’s home or another facility, such as a nursing home. 20 These strict limitations contribute to provider hesitancy in referring patients to hos- pice. 12 In addition, hospice items and services under the HMB require that items and services be provided by Medicare-approved hospice programs made up of an interdisciplinary team, including members of specific disciplines. These team members, representing specific disciplines, fulfill different functions 20 : • The medical director works with the interdisciplinary team to provide suggestions and collaborate with the patient, family, attending physician, and hospice team. • Nurses coordinate patients’ care and assess and manage symptoms. They provide patient and family education, collaborate with the physician and other team members, initiate and administer treatments, provide physical care, and offer emotional support. • Home health aides are certified Nurses Assistants who provide personal care, support, and light housekeeping for the patient and family. • Social workers evaluate and support caregiving resources, seek out community resources, assist patients and families with any legal or insurance concerns, and offer supportive counseling. • Chaplains or pastoral counselors offer spiritual support to patients and family members, directed by the patient and family members’ needs, values, and beliefs.
Pediatric palliative care
Pediatric palliative care is specialized medical care for children of any age that can be provided at any stage of a serious illness, along with treatment meant to cure. 23 Pediatric palliative care, similar to that for the adult population, also aims to meet the emotional, developmental, and spiritual needs of patients and their family members. 23 For example, psychosocial interventions can be offered to adolescents and young adults in the form of weekend retreats, transition services to help when they go back to school, sessions with social workers who provide counseling, and work with expressive arts therapists. 24
Volunteer services
Hospice volunteers are used in day-to- day administrative and/or direct patient-care roles. Volunteers are an essential part of the interdisciplinary team and endure rigorous training to participate in hospice programs. Their role is to assist in various tasks, including caregiver support, patient companionship, legacy writing, and administrative duties.
Perinatal and neonatal palliative care
The Centers for Disease Control and Prevention 25 reports that births before 37 weeks gestation rose for the fifth straight year to 10.23% in 2019. This fact 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. 26
Bereavement services
As indicated previously, both hospice and palliative care programs offer support to bereaved family members as they anticipate the patient’s death. However, hospice programs that are Medicare certified are required to also offer bereavement care to the family for 13 months after the death. These bereavement services may include monthly phone calls to the family members, acknowledgements of anniversaries, receptions honoring those on hospice services, and resources for support groups. 22
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