The Caring Spirit of Hospice

As a registered nurse, I have never worked in the hospice arena. However, I do have experience with hospice.

Years ago, when my mother-in-law, Helen, was diagnosed with terminal lung cancer, I was a nurse’s aide. Healthcare was new to me, but with a family member dying, I had a crash course. Hospice played a large part of Helen’s last few months of life.

There comes a time when patients and families may have to decide when, or if, to stop treatment for cancer. Reaching this crossroads, we elected to care for my husband’s mom in her own home, because that’s where she wanted to die.

During her last few weeks of life, she did not know where she was or who her family was – but we could tell she was in pain. The nurses from hospice taught us a lot, the most important point being that Helen had a right to be free of pain and die with dignity.

A Place of Comfort
The demand for this special type of nurse is greater than ever before. More than one in four patients who die in America today have received hospice care.

According to the Hospice Foundation of America, more than 3,100 hospice programs exist in the United States, Puerto Rico and Guam. Data from the National Hospice and Palliative Care Organization shows hospices served approximately 885,000 patients in 2002.

Originally, the term hospice referred to a place of shelter and respite for weary or ill travelers, and the term can be traced back to medieval times. Dame Cicely Saunders, a physician, founded the first modern hospice in 1967 in a suburb of London. This was when the term hospice was first applied to specialized care for dying patients.

The first hospice in the United States was established in New Haven, CT, in 1974. Soon, a formal definition of the modality emerged from the National Hospice and Palliative Care Organization:

“Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes.”

Inpatient Hospice Care
Traditionally, hospices were stand-alone facilities; in 2001, 41 percent of hospices were freestanding. But on July 2, Wuesthoff Brevard Hospice and Palliative Care opened an inpatient hospice care center. Although the concept of hospice is not new, this hospice is the first of its kind in Brevard County and the only one in Brevard, Orange, Osceola and Seminole counties. It is located on the Wuesthoff Medical Center-Rockledge campus.

“We opened the inpatient unit because we felt it would provide better continuity of care to have our patients taken care of by our own hospice staff,” said Christine Devlin Klawon, BSN, RN, manager of clinical support services for Wuesthoff Brevard Hospice and Palliative Care.

The decision to proceed came after Wuesthoff reviewed statistics regarding how patients were being admitted to area hospitals for acute care related to their hospice diagnosis. Based on data from patient/family surveys regarding hospital stay satisfaction, hospice officials thought patients would be better served if they could provide the care in a center where everyone understood the hospice philosophy.

A Homelike Setting
The patients at the Wuesthoff Brevard Hospice and Palliative Care Center differ from patients receiving hospice care at home in that they usually are in crisis, Klawon remarked.

“Either they are unable to get relief for one or more of the symptoms that have occurred because of their terminal diagnosis, or the family is in crisis and unable to handle the intensive care they require,” she said. In addition, the nursing shortage has made it difficult to continuously provide staff in the home

The inpatient hospice care center was an ideal way to fulfill patient and family needs.

The care center provides a homelike setting, a nice change for patients and families weary of the hospital setting. Each of the 12 rooms is private with its own bathroom, plus a pull-out bed for a family member to stay overnight.

There also is a playroom that provides a place for children to play without having to worry about disturbing others. Families can utilize the dining room, in which Klawon has noticed families meeting and providing support for each other.

A family room, quiet room/library, family kitchen and laundry room round out the center. Families are allowed to bring pets to visit, and visitation is allowed around the clock.

Care Team
Care is provided 24 hours a day, 365 days a year. The care center typically is staffed with an RN, an LPN and two certified nurse’s aides (CNAs) for eight patients. Patient capacity is 12, at which time another RN and CNA are provided. Regardless of patient population, however, the goal is to staff according to acuity.

Also on the team are a chaplain, grief support counselor, children’s specialist, social service counselor and unit secretary. There are volunteers to assist with phones, sit with patients and help meet the families’ needs.

The full-time medical director, a physician nationally certified in palliative care, is available for all patients. Primary care providers are encouraged to follow their patients throughout their stay in the care center; however, the medical director will follow patients if requested.

The rewards of hospice are great, Klawon said.

“I have never had such appreciative patients, families or co-workers,” she shared. “Each and every discipline I work with is wonderful.”

She also feels she is using what she learned in nursing school: to care for the patient and family as a unit.

Special Care, Special Patients
Cindy Harris-Panning, BBA, RN, LCRM, the care center’s executive director, became a hospice nurse more than 20 years ago. If there’s one thing she’s learned, she said, it’s that “there is always a need for more information about hospice, and what it can do for our most vulnerable community members – those who are dying.”

Brevard Hospice has been providing care for the community for 19 years. Harris-Panning noted the organization has always recognized the need for a residential facility for dying patients, because some of their patients need a level of care that is difficult to provide in the home setting.

Uncontrolled pain, inability of the caregiver to provide care or cope with the job of caregiving, or a patient in the dying process, requires moving a patient out of their residence. Before the inpatient hospice care center existed, the only alternative was to admit the patient to the hospital. This is not an optimal situation for staff, patient or family, as most hospital nurses are accustomed to providing acute care, not palliative care.

Meeting a Need
Harris-Panning knows firsthand the frustration of being unable to meet the needs of someone who is dying.

“I feel very proud that Brevard Hospice has the ability to offer another choice to patients and families – a state-of-the-art inpatient unit, staffed by palliative-trained personnel. As my medical director once said, what we do is not rocket science, it is practicing good sound medicine, focusing on the needs of each individual patient and family.”

This is why Harris-Panning stays with hospice care. Many of her staff would echo the same sentiments, she said.

Even with the nursing shortage, turnover has not been a problem. Harris-Panning thinks it has a lot to do with the nature of hospice work – taxing but rewarding.

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