A lot of hard work, organizing, phone calls, and soliciting of volunteers by Mary and Ray Hall is, in part, one reason Sanford Hospice is an important part of the health care system of he Vermillion community.
The driving force behind the rural Vermillion couple’s relentless efforts is their love for their daughter, Marilyn.
Marilyn, who grew up on the family farm located approximately five miles east of town, married John Hippe in Minneapolis, MN on Feb. 28, 1981.
The Hippes moved to Madison, WI, so that John could continue his education there. On their six month wedding anniversary, Marilyn was diagnosed with breast cancer.
She battled the disease for five years, with Mary traveling to Wisconsin to stay with Marilyn as the cancer gained ground.
There finally came a time when Mary traveled to Wisconsin one last time.
“The last of the three weeks before she came here (to Vermillion), I went there (to Wisconsin) and stayed with her at her home,” Mary said. “And then we were to decide when she wanted to come home to die. After I was there for three weeks, we decided it was time to bring her home.”
Marilyn’s boss graciously lent the Halls the use of his van so that their very weak and terminally ill 34-year-old daughter could make her final trip home lying down.
“She was here for three weeks, and the whole family cared for her,” Mary said.
Marilyn passed away, surrounded by family in her parents’ farmhouse in July 1986.
The Halls’ oldest daughter was, at the time, a medical social worker in the Washington, DC area. “She had asked me if we had hospice in Vermillion,” Mary said. “There was no hospice in Vermillion. I was informed later that hospice had been offered in Vermillion two times, and there was no interest in it. That didn’t deter me, however. I was determined there was going to be hospice in Vermillion.
“We so wished we had hospice. The home health nurses came to our house, and that was fine, and we checked with her doctor in Madison, WI, and he informed us (on what to do), too,” she said.
Dr. William Dendinger agreed to provide medical care to Marilyn during her final weeks of life. The Halls also received valuable help from Tammy Rohde, the daughter of the late Al and Marilyn Siecke of Vermillion, who at the time was on maternity leave from her job as a nurse.
“She said ‘I will help you,’ and both of us called all over speaking to various hospices and asking how they operated, and we got lots of information from that,” Mary said.
One month following Marilyn’s death, Mary and Ray began their efforts to see that other local families who were experiencing a situation similar to what they had gone through weeks before would get needed help.
“The hospital in Vermillion (then known as Dakota Hospital) was very, very receptive, and so good to help us,” she said.
In 1986, Dale Garris, the hospital administrator, was enthused about seeing hospice services provided in Vermillion. “He was very helpful, and he gave us office space and nearly everything else that we asked for.”
Comfort from volunteers
Hospice in Vermillion came to life thanks to a grass-roots effort by Marilyn and other volunteers, who, at the time, traveled to McKennan Hospital in Sioux Falls to receive training.
“It was amazing … the community response to hospice was absolutely amazing,” Mary said. “I couldn’t think of a certain organization or business or anything else that wasn’t 100 percent behind us.”
Mary and other volunteers who were determined to see hospice services in Vermillion planned their first community meeting in November 1986.
“The administrator at McKennan Hospital in Sioux Falls said to us ‘to really think about this. We advise people to wait a year in order to deal with their grief.’ I said, ‘I’ve dealt with my grief. I want to do this,’” Mary said.
Pioneers of hospice in Vermillion include Mary and Ray, Barb Kronaizl and Marilyn Siecke. “We went to McKennan, took the classes, and then we arranged the classes for Vermillion and both hospitals (Dakota Hospital and McKennan Hospital) agreed to honor the contract that they had had before. They paid for the people from McKennan to come here to give the lessons. By that time, we had professionals established so that they could interview people and determine if they should be volunteers or if they shouldn’t.”
The concept of hospice was still new and unfamiliar in Vermillion at the time. As Mary and other volunteers planned their first community meeting in late 1986, they created about a dozen pamphlets to hand out to what they expected would be a very small turnout of interested citizens.
“Sixty people turned up at the door,” she said. “We held our first meeting at the university. They allowed us to hold them in the Continuing Education Center.
“So, after that, we assumed if 60 people showed up, there was an interest,” Mary said. “It was overwhelming.”
Hospice care in Vermillion initially was offered in both home settings, and in the local hospital.
“My intention to begin with was to work with the hospital. But I could see that the hospital setting may not begin to work for a long, long time, and I didn’t have that much patience,” she said, laughing.
Hospice became an active, volunteer-only service in Vermillion in 1986.
“We not only served here; we went to Alcester, Beresford, Viborg, and generally any place in about a 30-mile radius,” Barb Kronaizl, one of the pioneering volunteers, said.
Soon, the volunteers were filling specific roles. Mary became the main contact person. After receiving a call from someone for hospice care, she then arranged for the volunteers to provide that help.
“The doctors were wonderful, the nurses were wonderful …everybody – the volunteers were perfect,” she said. “Some people wanted to work directly with the people; others didn’t, they preferred to do other things, so we had every area covered.”
Barb decided to step up immediately when it became apparent that Mary’s initial efforts were going to depend on volunteers.
“I was raised in a family that always helped people who needed help,” Barb said. “And sick people need help, and hungry people need to be fed.”
Today, the professional services offered by Sanford Vermillion Hospice offers local people an opportunity to maintain a high-quality life as they experience the death process.
“I think Joanne Martin, one of our hospice nurses, put it very well – sometimes people aren’t ready to say that this is the end of their life,” said Kay Hansen, site manager at Sanford Vermillion Hospice, “but having hospice come in, it provides such a quality to the end of their life.
“That’s what the purpose of it is; to provide quality and comfort at the end of someone’s life,” Kay said. “It helps them to prepare to accept that this is the end of their life. You are almost prepping them to be comfortable in that mode … by going in and reinforcing that you are there to help them with what their goals are at the end of their life, and with what they need – it helps people come to the acceptance that this may be the end of their life, but they can still have quality at the end of their life.”
‘Hospitality’
The term hospice seems to elicit a response of fear or dread from a lot of people even though “hospice” comes form the same linguistic root as “hospitality.” The word and concept of hospice can be traced back to medieval times and referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care of dying patients in 1967 by a physician Dame Cicely Saunders, who founded the first modern hospice – St. Christopher’s Hospice – in a suburb of London.
In the mid 1960s, Yale University invited Dr. Saunders to become a visiting faculty member for their school of nursing, about the same time, exchange programs for Yale university faculty to come to the London hospice to learn about the program were established.
Toward the end of the 1960s and into the early 1970s, Dr. Elisabeth-Kubler-Ross published a book on death and dying identifying five stages through which many terminal patients may progress. In this book Dr. Kubler-Ross makes a plea for home care treatment versus institutional settings for end of life care; she goes on to testify on the subject of death with dignity before a US Senate Special Committee on Aging. By 1974 the first hospice legislation is introduced but not enacted.
During the mid to late ‘70s and into the early 1980s, the US Department of Health, Education and Welfare promoted support of hospice and with HCFA (health care financing administration) initiated demonstration programs at 26 hospices across the country to determine cost effectiveness of hospice care and to help determine what hospice is and what it should provide. By 1982 Congress includes a provision to create a Medicare hospice benefit and by 1984 JCAHO initiates hospice accreditation.
It took until 1986 for Congress to make the Medicare Hospice Benefit a permanent benefit and states are given the option of including hospice in their Medicaid programs. Hospice care is finally available to terminally ill nursing home residents. It took until 1993 to include hospice as a nationally guaranteed benefit under President Clinton’s health care reform proposal and hospice is finally an accepted part of the health care continuum.
In 2002 the Department of Veterans Affairs launched a program to increase veterans’ access to hospice and palliative services. By 2004 more than 1 million Americans with life-limiting illness were serviced by the nation’s hospices, the first time the million-person mark had been crossed. This is the same year that the first national conference on access to hospice and palliative care is hosted in St. Louis. By 2007 research published in the Journal of Pain and Symptom Management reports that hospice patients live an average 29 days longer than similar patients that did not have hospice care.
By 2009 the number of hospice volunteers continued to grow with a record 550,000 people serving as volunteers.
Hospice services continue to grow, as does the population of patients most likely to need those services, the baby boomers.
Needless to say, hospice is a relatively new concept to organized medical care, but a much older concept in providing care for the weary or ill.
A more formal approach
Five years after Marilyn’s death, and after the community had experienced the positive impact provided by volunteer hospice caregivers, a more formal, medical approach was adopted in Vermillion.
Deanne Syzmonski was hired in March 1991 to provide hospice nursing. “And I was hired to do home health care,” said Marsha Thompson, “but we were actually both cross-trained so that we could do either service. We started working for Dakota Hospital as nurses, and we were on call for hospice every other day.
“As time passed and as we got busier, we hired more nurses,” Marsha said. “We took care of some of the patients at home, but they had to have a care giver with them that was willing to be with them 24/7. And some patients were at the hospital.”
The involvement of the local hospital was one of the original goals of Mary’s efforts from the very beginning. She also knew it was time to step back a bit as Medicare and Medicaid took on a growing role in helping to provide hospice services.
Mary continued to provide volunteer services for several years, however. “We still have some of the grass-roots volunteers involved in hospice yet today,” Kay said. “These are the people who first stepped up in 1986, and they are still involved.”
Today, there is a room specially designated for hospice care in Sanford Vermillion Hospital.
“There is also a program through Medicare or insurance that is called ‘acute hospice.’ That program is designed to manage acute symptoms,” Kay said. “For example, if somebody has severe pain that is not controllable in the home, we can put them in the hospital under acute hospice and those cares can be given under that program in the hospital until their symptoms are managed, and then they’ll typically go back to either their home or the nursing home, whatever is their primary home.”
The hospice room at Sanford Vermillion is also used for people at the end of life who choose to pay privately for the room for a short period of time. This typically occurs at times when a patient can’t be stabilized to be taken home. In those situations, families often opt to pay for the room as a private cost while hospice services are provided.
At times, patients who hadn’t previously used hospice services are moved to the hospice room in the hospital because of the comfort it provides to those at the end of life.
This room is newly decorated, with new equipment and new furniture added, including a fold-out couch to allow individuals to spend the night with a patient.
A room across the hall, equipped with a large table, books and games, is designed as a place where family and friends can congregate while a loved one is in the hospice room.
“The whole intent is to make both the family and the patient as comfortable at the end of their life, and that room is available in the hospital in order to do that,” Kay said.
It is a service that may not differ much from what is offered in other communities, except for one thing – its rich legacy in Vermillion, filled with the joy of life, the sorrow of death, and the undying determination of Mary and Ray.
“We loved what we were doing,” Mary said.
