More About Living Than Dying
Hospice care offers support to both patients and families beyond just the final few days of life.
Illustration by Michael Rushbrook
Dying. It’s an uncomfortable topic. Most readers would probably rather talk about the birds and the bees with a 12 year-old than discuss pending mortality. Though every living thing shares the same ultimate unavoidable destiny, humans spend most of their lives in denial of it. But when death refuses to strike swiftly from the fog and instead approaches like an inescapable wall of rain advancing across a green meadow, it demands some level of attention in the time between recognition and arrival.
Hospice care comes into play when traditional curative medicine cannot halt the wall of rain’s encroachment. A person still needs medical care, but the situation calls for concentration on comfort, as directed by the patient, rather than healing, as directed by a physician. This idea of transferring efforts away from expert problem-solving toward personal decision-making is a relatively recent movement in modern medicine, even though care for the dying is not.
The basic concept of hospice has existed since medieval times. Historically, it fell within the functions of the church. Monasteries provided respite for weary and sick travelers, and priests oversaw the dying poor. In the late 19th century, the Congregation of the Religious Sisters of Charity, who had taken up the duty and challenges of providing spiritual and temporal care to Ireland’s impoverished and ill citizens, established Our Lady’s Hospice. There they received and ministered to the sick and dying who had no other place to go.
Not until the last century, however, did hospice come into its own. Dame Ciciley Saunders, a physician in the U.K., established St. Christopher’s Hospice in London in 1968 and, from that point forward, hospice rapidly evolved into a specialized form of care for terminally ill patients. Wink O’Neal, manager of psychosocial community services at Trinity Hospice, who has been with the organization since its beginning in 1979, when it operated as St. Joseph’s Hospice, astutely dives straight to the core, saying, “It’s a way of approaching care for people who are living in the face of death.”
Hospice serves patients who have exhausted or opted out of aggressive clinical treatments for their disease or illness. It encourages patient involvement to whatever degree desired. It stresses quality of life, dignity and respect. Hospice enables and allows people to die the way they lived, recognizing that death, like life, is a very personal and individual experience.
Over the past several decades, as hospice has become better organized philosophically and in practice, regulations have been put into place to ensure that services rendered are of quality and are delivered to the proper population. Federal monies through Medicare pay 100 percent of hospice costs. Private insurance, as well as Medicaid, also cover costs for those not eligible to receive Medicare benefits.
The primary criterion for admission to hospice care, according to O’Neal, is “a life-limiting illness with a prognosis of six-months or less if the disease follows its natural course.” Any number of diagnoses, including cancer, heart disease, lung disease, liver disease, renal disease, adult failure to thrive, Alzheimer’s disease, Parkinson’s disease and Lou Gehrig’s disease, may qualify a person of any age, young or old, for hospice.
Though a physician referral is required, switching from traditional medical care to hospice care is elective, not mandatory. The main difference between traditional medical care and hospice is that the chief objective of hospice is symptom and pain management, as opposed to prevention of death. While spiritual, social, emotional and physical needs are also met, Rosemary Matthews, patient transition specialist at Trinity Hospice, says, “We’re experts in symptom management.” O’Neal adds, “Our goal is to prevent pain, not treat it when it comes.”
Except in the case of temporary hospitalization, hospice care is provided wherever “home” is for a patient, whether that’s a skilled nursing facility, an assisted living facility or a residence. A friend or family member acts as primary caregiver and retains responsibility for attending to the patient day-to-day. “We say the patient and the family are a unit of care. What affects the patient affects the family. What affects the family affects the patient,” says O’Neal. An interdisciplinary team of nurses, nursing assistants, medical social workers, chaplains, the medical director and volunteers aid the patient and caregiver via support, education and assistance to the patient with personal care and tasks of daily living.
Four levels of care meet patients and their families where they are in the process. Approximately 95 percent of hospice care is routine home care. The hospice team of professionals assures that the patient is comfortable and the caregiver feels confident. In the case of a crisis event, continuous care is provided, which means a skilled nurse is in the home for a minimum of eight hours a day until the crisis is resolved. General in-patient care occurs if the patient is hospitalized to improve control of pain or symptoms. Restive in-patient care may be provided for up to five days in situations when a caregiver requires a break or the patient must be re-located.
In recent years, a number of hospice agencies have entered the marketplace. Unlike hospitals, hospice providers are not required to secure a certificate of need. On the one hand, patients enjoy an array of choices. On the other hand, they may feel overwhelmed when narrowing those choices to a single hospice agency. Bear in mind that all providers operate under the same federal guidelines that set minimal levels of care and services. From there consider the scope of services each agency offers above and beyond what is required. For example, is a chaplain on the care team? Do patients have access to occupational, physical, music or art therapy? How robust is the volunteer program? Determine how accessible the care team is. Is there a number to call in case of an emergency at any time of the day or night? And ask specifically about the continuity of services. Will the same volunteer, nurse, CNA, etc. show up each week? On a regular day at a regular time?
One of the biggest difficulties and disappointments with hospice care is that people often enter it too late to realize all of the benefits. “A lot of times no one has really sat down and talked to the family about it,” says Matthews, or the family and patient have a negative impression of hospice care. They perceive it as an admission of failure or a forecast of almost immediate death.
Matthews reassures, “It’s just a shift of the goal of medical care.” When the focus turns to symptom control and pain management, it’s not uncommon for a patient to exceed the six-month prognosis. O’Neal notes, “We’ve had patients in the program for as long as four years.” Patient evaluations every 60 to 90 days determine if recertification for hospice is appropriate. If the evaluation demonstrates decline in the patient’s condition, he or she continues to receive hospice care for another six months. A patient whose condition stabilizes is discharged, until future need arises. Furthermore, if new treatment options become available and are desired, a patient can choose to voluntarily revoke his or her hospice admission without penalty. Also, contrary to popular belief, a hospice patient can maintain a relationship with his or her primary physician and receive curative treatment for health issues unrelated to the terminal illness.
Because loved ones are such integral participants in the hospice care plan, services for them do not end at the time of the patient’s death. They may continue to benefit from bereavement resources for up to 13 months afterward. Through counseling, grief support groups, educational programs and opportunities for social interaction, survivors are buttressed as they transition out of their caregiver role.
Unfortunately, healthcare consumers, due to uneasiness with considering the demise of a loved one or themselves, tend to possess limited information about hospice. But hospice care is more about living than dying. It enables terminal patients to experience high quality of life in the end-stages of illness. Elimination or reduction of symptoms allows the patient to continue normal routines for as long as possible. To repeat O’Neal, “It’s a way of approaching care for people living in the face of death.”