Caring for patients in a hospice setting is a nurturing and supportive effort that draws on the expertise of professionals engaged in many disciplines, ranging from medical to therapeutic. Indeed, the services offered by a leading hospice, such as The Connecticut Hospice, may in fact be broader and the care offered patients more varied than what is typically pictured by members of the public.
Even so, hospice-service providers remain concerned about the number of persons accessing hospice care late in the course of an illness. That’s per a new report issued by the National Hospice and Palliative Care Organization (NHPCO), which states that “53.8 percent of Medicare beneficiaries received hospice care for 30 days or less in 2018.”
More telling, is that fully a quarter (27.9 percent) of the beneficiaries received care for seven days or less— which NHPCO considers “too short a period for patients to fully benefit from the person-centered care available from hospice [providers].”
“This annual report provides a valuable snapshot of hospice care access and care, and also a reminder that we must continue to strive to make hospice care more equitable and accessible,” said Edo Banach, NHPCO president and CEO, in a statement. “It is also important to remember that behind these numbers are people who rely on person- and family-centered, interdisciplinary care to help them during a time of great need.”
Of compelling interest to hospice patients and their family members and friends are sections within the full 26-page report on what hospice care entails, how and where that care is delivered to patients, and what are the levels of care provided.
“Hospice focuses on caring, not curing,” NHPCO observes. “Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s family as well.”
The report also points out that, in most cases, “care is provided in the patient’s home but may also be provided in freestanding hospice facilities, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients with any terminal illness or of any age, religion, or race.”
Indeed, the term “hospice” is somewhat elastic. It describes any approved provider of hospice services, including those that operate free-standing hospice inpatient hospitals and those that bring hospice care directly to patients where they are, be that a long-term care facility or in their own home.
The Connecticut Hospice (also known as CT Hospice) fits both descriptions, as it operates its own hospice hospital in Branford and fields teams of hospice medical professionals and caregivers to provide services at other caregiving facilities where patients are residing or right in the patients’ homes.
When hospice services are provided as in home, a family member typically serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual, notes NHPCO. “Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week. The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control.”
An interdisciplinary hospice team usually consists of the patient’s personal physician, hospice physician, nurses, hospice aides, social workers, bereavement counselors, clergy or other spiritual counselors, trained volunteers, and speech, physical, and occupational therapists, if needed.
NHPCO lists these as interdisciplinary team services:
Nancy Peer, an Associate Professor for Hospice and Palliative Care at Central Connecticut State University, secured a bed for her son, Brian, who was dying of testicular cancer, so he could live out his last weeks at CT Hospice. “Every nurse that came in was not only compassionate… they would see how our son was doing and then they wanted to know how they could help us,” Peer recently told the Daily Nutmeg of New Haven.
Peer said that during the week Brian spent at the hospice, before dying at age 39 and leaving behind his wife of one year and his parents and a younger brother, friends and extended family were able to visit him and Peer and her daughter-in-law stayed with him. She remarked that the help he and his family received from CT Hospice was “priceless.”
The NHPCO report also details the four Levels of Care (as defined by the Medicare hospice benefit) that hospice patients may require. The levels are distinguished by the intensities of care provided relative to the course of a given patient’s disease.
“While hospice patients may be admitted at any level of care, changes in their status may require a change in their level of care,” NHPCO explains. “The Medicare Hospice Benefit affords patients four levels of care to meet their clinical needs: Routine Home Care, General Inpatient Care, Continuous Home Care, and Inpatient Respite Care.”
The report rightly credits the significant positive impact of hospice-care volunteers. “The U.S. hospice movement was founded by volunteers” and they “continues to play an important and valuable role in hospice care and operations.”
But volunteering is not a simple matter of stepping up to help others. The Connecticut Hospital, for example, requires that prospective volunteers receive a background check before coming onboard and then they are professionally trained by hospice staff to provide care and assistance to patients and their loved ones.
The importance of volunteers is underscored by NHPCO’s observation that “hospice is unique in that it is the only provider with Medicare Conditions of Participation requiring volunteers to provide at least 5% of total patient care hours.”
Volunteers typically provide service to others in these three general areas:
Spending time with patients and families (“direct support”)
Providing clerical and other services that support patient care and clinical services (“clinical support”)
Engaging in activities such as fundraising, outreach and education or serving on a board of directors (“general support”)
The Connecticut Hospice is America's first hospice. It was founded by Florence Wald, and a group of nurses, doctors, and clergy, in 1974 and was the first of its kind in the United States. A few years prior, Wald, then an Associate Professor and Dean of the Mental Health and Psychiatric Nursing Program at Yale University, was inspired by a palliative care lecture given by Dr. Cicely Saunders, the founder of St. Christopher’s Hospice, the first hospice in the world.
Today, CT Hospice’s services encompass both in-home and inpatient care for persons diagnosed with a terminal illness with a limited prognosis, normally of six months or less.
The Connecticut Hospice’s central commitment is to enable the patient to live as fully and completely as possible during the time of their illness. This includes supporting the entire family as the unit of care, rather than just the patient. For example, home-care programs are designed to make it possible for families to keep the patient at home if such care is appropriate, and to marshal community resources to help deepen support and keep care costs as low as possible.