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hospice story


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hospice story

  1. 1. Help  with  the  Journey   By  Jenny  Whitford   Family  &  Friends  staff   The journey of life consists of many stages. Beginning at birth, growth and achievement are celebrated as part of human development. Yet no matter what each person accomplishes, the next stage is guaranteed to bring new challenges. Although many people shy away from those entering the final stage of their life, these people often need support to help them complete their journey. For nearly 25 years, Rainbow Hospice Care of Jefferson has been meeting that need. Now, Rainbow Hospice's new inpatient center in Johnson Creek will offer even more support for people and their families while they embrace the final step of their journey. Rainbow Hospice Inpatient Center, 1225 Remmel Drive, Johnson Creek, is a 12,000-square-foot palliative care facility that aims to provide comfort for those who qualify for hospice care and have more advanced needs than what can be met by in-home care nursing staff. The eight-room facility offers end-of-life care for those with a diagnosis of six months or less to live and who are not seeking curative treatment. Patients may check into the center for inpatient care or for respite care of up to five days to provide rest for the primary caregiver. While a patient in Rainbow Hospice Inpatient Center, people receive pain management support, and will have access to family rooms, spa services, spiritual guidance and emotional support, as well as other amenities. Designed to reflect the comfort of home, each of the patient rooms is situated on an outside wall and decorated to provide comfortable surroundings. Although the rooms are built to hospital code, a visitor would never suspect it. The rooms feature residential-style fixtures and wooden cabinets that cover essential medical resources. Every room is equipped with oxygen, is wheelchair accessible and built with multiple windows to ensure as much natural lighting as possible will brighten the room. Adding to the comfort of the rooms are handmade quilts, positioned on each bed in the center. These quilts, which are made by volunteer quilting groups, are then given to the patient when they check out of the facility or passed along to the patient's family. Chuck Frandson, Rainbow Hospice Foundation president, said volunteer quilters visit the inpatient center several times per month to create keepsake quilts for each room. The quilts are made in the community room in the basement, where, according to Frandson, "The quilters convert the room into a little quilt manufacturing plant." The spa offers patients the opportunity to take a whirlpool bath, receive a massage, salon services, aroma therapy or Reiki. "We have given patients a tub bath -- a whirlpool bath -- who had not had anything but a shower for the past decade due to health limitations. You would think that the difficult thing would be getting them into the tub, but with the full access chair lift, that's not the hard part. The hard part is convincing them when its time to get out!" said Frandson. Every part of the hospice center is built with donations, many of which are from the families of a loved one who stayed at the center but has since passed. Often families like to honor their loved one by donating funds toward a special aspect of the center which reflects their loved ones' interests. For example, a family might donate toward the grounds if the loved one always loved to garden. Frandson said building the center took years of education, not in how to build it but in convincing the community of the need for this type of resource. "Many people have such a negative idea toward hospice care, but really, when the time comes that they or a loved one needs it, they really can see the value in having that type of service available to the community," said Frandson. Although most people do not like to anticipate a need for end-of-life care, often the need arises and people are grateful for access to those services. "I cannot tell you how many times I have walked into a room to have people think they were not interested in learning about hospice care, only to see them one, two, maybe three years later and have them thank me because their mother or father or grandparent was able to find comfort here," said Frandson. Apart from offering medical care, the main focus at Rainbow Hospice Inpatient Center is comfort. They
  2. 2. aim to use every dollar they spend to provide comfort for those in need. Before they make a purchase they consider, "Will this bring comfort to those in need?" Karen Reppen, communications manager, said, "Its (Rainbow Hospice's) goal is comfort for every day -- not just comfort for the patient, physical comfort, but also emotional comfort for the families." Many people view hospice in a negative light. Although the stigma of hospice care has been somewhat dispelled in recent years, it still exists as something most people wish to avoid and shelter their families from. This stigma is what Rainbow works to eradicate. Frandson explained, "The important aspect of hospice care is to help patients refocus their understanding of their mission. Up to this point it has been to fight, but now it changes to seeking comfort and enjoying a meaningful life. Hospitals cure people. But that is not our task." Although hospice is a heavy topic and one often difficult to broach, thorough preparation and planning for the future includes taking into consideration the possibility of hospice needs. "I want to believe that everyone I care about will always get better, but that's not always the case," said Frandson. Because Rainbow Hospice believes in the importance of discussing end-of-life care, they make a point to provide and facilitate opportunities to discuss those matters. Reppen said, "Americans don't like to think about dying; they always just focus on fighting and overcoming. It's the American way. But what most people don't realize is that there comes a time when fighting is no longer possible. And that's OK. That's not giving up. It's embracing life as it comes." Rainbow offers support for individuals in every stage of end-of-life planning, from estate planning and developing advance health care directives to support for families and caregivers during times of illness, as well as grief support following a loved one's passing. Patients and their families aren't the only ones impacted by hospice care services. The staff, volunteers and community members all speak volumes on how Rainbow has impacted their lives. Prior to joining staff at Rainbow, Frandson was able to benefit from hospice services with the care of his father-in-law. He said when he got past the grieving stage, he knew that this was something he wanted to be involved in and so he began volunteering. After being a volunteer and board member for eight years, he was asked to become the foundation president. Frandson said, "I don't go to any place when I speak to a group of 10 or more where someone doesn't stand up with a testimonial of how hospice has positively impacted their family." Kathy Ready, a volunteer since January, said she began volunteering the day after she retired from working as housing administrator with Marquardt Village because she knew she wanted something to add meaning to her life and give her a way to impact others. Although she was unfamiliar with Rainbow Hospice Inpatient Center, she had driven by many times and stopped to see what it was all about. "As soon as I walked in I knew this was something I wanted to be involved in. It gave me goose bumps," Ready said. As part of her volunteer duties, Ready enjoys greeting and welcoming families. "I cannot believe how often I get thanked. It's just thank you, thank you, thank you. It really shows how grateful the families are to be able to have Rainbow Hospice helping them." Ready said. And the families aren't the only ones who benefit. Volunteering is an important part of Ready's life. "It has given me a purpose. A purpose beyond retirement. I love helping people," she said. Volunteer services are led by Rhonda White, who has been with Rainbow for 11 years, five of which have been in the capacity of volunteer coordinator. The hospice center is required by law to have volunteers provide 5 percent of the total work hours in order to receive Medicaid reimbursement and maintain its nonprofit status. Rainbow typically has between 17-20 percent of its labor coming from volunteer services, which equates to nearly 200 volunteers annually giving of their time. White's motto in organizing volunteers is that "everyone has a skill set." She said, "Whatever they (volunteers) want to do, we will find a way to allow them to use that skill here. I'm not saying that we will be able to hold weekly classes in origami, but we can have someone come in and do that occasionally when there is interest. And that happened -- we had one lady who requested that she could learn origami before she passed -- and through a volunteer, we were able to provide that for her." White explained that volunteers are crucial to hospice services because, although many cannot provide skilled medical services, they can fill another, equally important need -- companionship. For many patients, having someone to talk to and share their life and experiences with gives them the opportunity to validate the life they lived. White said the best part of working with volunteers is hearing about how the volunteers get matched with just the right patients for relationships to develop. When it began in 2007, Rainbow Hospice Inpatient Center was a $4.5 million project, which was built entirely with community and individual donations.
  3. 3. Frandson said when he was appointed to head up the project, he had no idea where the money would come from. The economy was not flourishing and the prospect of raising funds looked bleak. Yet, the money flowed in to provide for all their needs. "Miracles. That is the only way I can describe how the project was funded. There were times when I would be asked how we were on funding and what donations we were expecting and I would have nothing to report to the board -- yet a week, maybe two weeks later, we would receive a considerable donation. And the board would look to me and say, 'Why didn't you tell us this was coming?' But it was because I didn't know. I couldn't anticipate the miracles that kept happening," said Frandson. Karen Lacke Carrig, president and CEO, says the total operation cost for Rainbow Hospice Care and Inpatient Center is about $6 million annually, with 91 percent of that being from Medicaid reimbursements. Rainbow Hospice accepts all patients regardless of ability to pay. Because of that, they must take extra care to be good stewards of available resources. Reppen said because of the nature of being a nonprofit and relying on charitable giving for a large portion of income, they must be careful not to allow waste. "Resource allocation is important. Since we serve patients at all stages of end of life, figuring out who needs what and where resources can and can't be conserved is essential," Reppen said. With six years behind them, Rainbow Hospice Inpatient Center looks forward to a year filled with expansion. Some new building projects for 2014 include a landscaping and underground sprinkler system, a labyrinth and a second parking lot. As part of a $500,000 capital campaign for 2014, they are working to improve laundry facilities in order to save money and offer better quality linens, finish the basement to provide office space and install charting software on all of their care providers' computers so they can complete reports while in the field, thus saving the time of traveling back to the office. Rainbow Hospice Care and Inpatient Center has a combined total of 56 full-time employees, which includes 36 nurses. It also has 30 part-time employees and 189 volunteers. During 2013, Rainbow Hospice Care and Inpatient Center served 338 patients.