Hospice Offers Help and Hope during End-of-Life Journey
Jun 30, 2018 11:49AM
By Jennifer Monahan
Hospice care is about comfort, control and—somewhat ironically—hope. Despite a common misperception that the “H-word” means death is imminent, hospice helps patients and families navigate through the days, weeks or months that comprise a patient’s end-of-life journey.
The distinctive feature of hospice care is its comprehensive nature. Hospice aims to support the physical, emotional, social and spiritual needs of a patient and that patient’s loved ones.
Elena Nosal, RN, BSN, CHPN, is a senior clinical manager at Family Hospice and Palliative Care, a part of UPMC HNA. She explained that hospice care is typically delivered by an interdisciplinary team that includes a physician, nurse or nurse practitioner, social worker, chaplain, home health aide and volunteers who work together to care for the patient.
Judy Connelly, RN, MSN, is the executive director of Good Samaritan Hospice, a mission of Concordia Lutheran Ministries. Connelly said that the care team meets weekly to talk about each patient currently in hospice, helping caregivers create and deliver a plan for holistic care.
By design, hospice care happens in the patient’s home. However, Connelly explained that hospice can occur wherever a patient deems home to be and may include an inpatient hospice facility or even a hospital. Freestanding inpatient facilities look more like homey bedrooms and living rooms than hospitals, and the ratio of patients to caregivers is typically better than in a hospital.
“Another difference is that hospice workers are specifically trained in end-of-life care,” said Nosal, adding that their goals are to offer comfort and to give the patient control over the situation rather than to cure.
Roni Lucas, RN, is director of customer experience at Good Samaritan Hospice. She said another important aspect of hospice care is the team’s support for the patient’s primary caregivers. A nurse does the initial evaluation to assess the patient’s needs and can help empower and support the family members or loved ones who are providing care.
“It can be a very difficult role reversal for a daughter to care for her ailing father,” Lucas explained. Hospice can provide education and resources to support that daughter with the physical care of her parent, help assess when the changing needs of a patient require more than the family member can offer, and support that family member’s own emotional needs.
“We collaborate with the family and help them to navigate the process,” Lucas said. Hospice will stay involved with the family for up to 13 months after a patient’s death to assist with grief and bereavement, depending on the family’s needs and wishes.
Unfortunately, many people do not know that hospice care exists or don’t realize that most insurances cover hospice care. Others believe that hospice is only intended for the last few days of life.
Rich Haverlack first encountered hospice as the caregiver for his uncle, who was nearing the end of his life. When his uncle landed in the hospital with pneumonia, a pulmonologist delivered the news that he would not recover, and after two weeks in the hospital, a social worker notified Haverlack that his uncle had to leave because his insurance would not continue to cover care. At a loss for where to go, Haverlack questioned the social worker, who recommended hospice care.
“It was like night and day in terms of his comfort and serenity, and my comfort and serenity,” Haverlack said, adding that he still struggles with the idea that his uncle could have benefitted from hospice care earlier. “He only had 33 hours in hospice; he could have had two weeks, but I didn’t know it existed.”
Haverlack’s experience is far too common, according to Nosal and Connelly.
“We are often a late referral,” Nosal said. “We need better education for both physicians and families to ensure earlier mention of palliative care and hospice care.” Connelly said that Medicare and most other insurance plans cover hospice care for six to nine months, but that the average length of service is only three weeks.
Nosal said that conversations about hospice care should ideally start at the point of a terminal diagnosis. Hospice allows the patient to have some control over what their end-of-life journey will look like.
“We plan everything in our culture,” Connelly said, “but very few people express what they want at the end of their life.”
Having an early conversation about that journey is paramount, Lucas said. “People can call us and have us walk them through it,” she explained. “They don’t have to use the information right away, but they need to understand their options.”
It is information that Haverlack wishes he had known earlier.
“In our culture, death and dying are anathema,” he said. “The normal way to die is to slowly ebb away in the medical system. The nearer you get to death, the less you want to be in that environment.
“Hospice workers are experts in end-of-life care,” he continued. “They know what they’re doing, and they don’t consider death a failure.”
For more information, visit Good Samaritan Hospice at www.concordialm.org, Family Hospice and Palliative Care at www.familyhospicepa.org or the National Hospice and Palliative Care Organization at www.nhpco.org.