The journey began as a standard transfer call with a hospice patient. For the crew, it was an uneventful transport until the patient began struggling to look out the ambulance window. The man said he just wanted to see the fall colors of the Colorado aspens one last time. When the driver heard his request, she immediately turned down a small country road. In an open field, surrounded by vibrant red and yellow aspens, the paramedics opened the doors of their unit and rolled the man out into the sunlight.
“Even though I had lived in these mountains my entire life, the first time I really saw an aspen was through a dying man_s eyes,” Steve Berry says. He and his partner, Kim Madison, crewed the ambulance that fall day in Colorado Springs. The experience touched them so much they were inspired to help other hospice patients make one last road trip.„
From that moment, 16 years ago, Sentimental Journeyƒa program that does just thisƒwas born. Berry, a well-known paramedic, cartoonist,JEMScolumnist and frequent speaker at EMS conferences, now hopes to inspire other agencies to establish similar programs.
Berry and Madison first approached their employer and Pikes Peak Hospice and Palliative Care with the idea of providing free transportation and medical oversight to terminally ill patients too ill to travel on their own. The hospice nurses and upper management were immediately on board. However, the ambulance company initially wasn_t as keen. “Their main concern was the liability,” Berry says. The hospice ended up assuming the liability and, eventually, everyone involved embraced the idea.
Berry and Madison faced other challenges launching the program, some obvious, and some not. “We wanted a free hand, but there were a lot of variables we had to think our way through,” Berry says.
Pikes Peak Hospice personnel recommended that the pair start by attending the week-long training session required for all hospice volunteers. There they learned the philosophy of hospiceƒquite a change from their long-time focus on life saving, Berry notes.„
As the program took shape, one obstacle after another fell in the face of the momentum the idea generated. According to Berry, it became a true collaboration. What_s more, they became part of the hospice team.
But the program still needed a name. Then, one of the hospice nurses remembered a classic 1940_s song called, “Sentimental Journey.” The words seemed to fit the program like nothing else: “Got to take this sentimental journey. Sentimental journey home.”
Making a Wish
When offered the choice of where to go for their last journey, most patients don_t choose Disneyland or some exotic locale. “Most of the time it_s pretty simple things,” says Kori Schaulis, complementary therapies coordinator for Pikes Peak Hospice. “But for a dying patient, it_s huge.”
Some want to visit a local park or their church. Others wish to attend a wedding, a child_s baseball game or a graduation. One woman wanted to do her Christmas shopping, four months before the holiday she wouldn_t live to see.„
“A lot of people just want to go home to the ordinary,” Berry says. One patient_s final wish was to smell his wife_s cooking one more time, then take a nap in his own bed.„
When another patient wished for one last Chicago hot dog, Berry arranged for a trip to a local restaurant that he knew served a wicked Coney dog. During the meal, the patient and restaurant owner learned they had grown up in the same neighborhood. “They talked for two hours,” Berry says.
During one memorable journey, Berry took a patient and her three young children to the Colorado Springs Zoo. The zoo officials were eager to accommodate the group. They kept the zoo open late and held off feeding the animals until the family arrived so the children could help. The local fire department was called in to assist moving the patient over the hilly terrain.„
Mom and kids had a wonderful day, holding the animals and even feeding the hippos. One of the gorillas, not usually known as a “people person,” came up as the woman approached and put his hand to the glass. “He was really drawn to her,” Berry says.
A week later, the 41-year-old woman died quietly in her sleep.
Berry says that the most moving request so far came from a 64-year-old woman and her 40-year-old daughter, both of whom were dying. They had promised each other that whoever passed on first, the other would attend the funeral.„
The daughter was the first to die. Berry and Madison were honored to be able to transport the mother in the ambulance behind the hearse. At the gravesite, it started to rain and the woman nearly slipped in the mud near her daughter_s grave. “I love my daughter and I want to be with her, but let_s not push things,” she quipped to Berry.
Preparing for the Journey
Schaulis says the idea for the journey doesn_t always come from the patient. Often members of the hospice team pick up on something the patient mentions.„
Once a request is made, Schaulis, in her position as therapies coordinator, arranges the outing. “Most organizations roll out the red carpet,” she says. Often they donate their services.„
For Schaulis, the program is the best part of her job. “I get to grant wishes,” she says. “The first time you set something up for a patient, you_re hooked. It_s one of the coolest things you can do for another human being.”
Berry says the EMS transport team meets with the hospice nurses 24 hours prior to the journey, in part, to learn what to expect from the family. “It_s important to know where they are in the grieving process,” he says. “They are also our patients.”
Input is received from the entire hospice team. “That way they are all involved and can give feedback,” Schaulis says. “If they have a concern, they can address it.”
The caregivers are briefed on the patient_s medications and health status. If the medications are particularly complicated, a hospice nurse may accompany them. However, Berry says, patients who are too acutely ill often aren_t good candidates for the program.„
Also, family members need to be reassured that their loved one will receive appropriate care. Typically, if the patient requires ALS care, a paramedic has to participate in the journey. A registered nurse suffices if the patient requires BLS care only.
Berry recommends EMS crews develop a checklist process that includes the weather forecast for the day of the journey, potential hazards, equipment requirements and the use of special transportation modes, such as a bariatric ambulance. A sample checklist is available atjems.com/extras.
All participants in the program need to remain flexible, he says. About half the time, a patient becomes too sick and the outing must be cancelled or rescheduled. “But that decision is made by the patient,” Schaulis says. “We don_t ever say, you_re too sick to go if they really want to do it,” she says. Sometimes a request needs to be expedited, she notes.„
Establishing a Program in Your Area
Since Sentimental Journey started, more than 100 patients have been transported. The response from the caregivers, patients and their families has been remarkable. “It needs to be national now,” Berry says, and offers the following guidance to those interested in creating a similar program.
He suggests bringing all of the stakeholders together to draft plain but explicit rules. From the nurses and management personnel to their equivalents on the EMS side, the program works best when everyone has buy-in.„
The program will need a physician advisor. Don_t forget to include the coroner in the process. That became a bit of a hang up when establishing the Sentimental Journey program in Colorado. The agreement the Colorado program reached was that if the patient becomes ill or dies during the journey, the crew, which is working under the medical license of the hospice physician, is to return to the hospice center with the patient.
Developing protocols for your service and the hospice facility is critical. “Pain management is a big one,” Berry says. But issues, such as who supplies the oxygen, can evolve into liability concerns. Berry recommends creating a packet for each patient that includes a hospice treatment plan worksheet, physician_s orders and the patient_s “Do Not Resuscitate” orders.
All participants should be required to attend training provided by the hospice facility. The program at Pikes Peak Hospice involves a 22-hour orientation class offered over a five-day period. Schaulis says they talk about working as a member of a team and how to establish boundaries.„
Maintaining the patient_s privacy is another important issue. To avoid drawing too much attention, Berry says providers wear a polo shirt that identifies them as a paramedic, but rarely do they wear a full uniform.
To address liability issues, the program developed a release for the patient to sign that does not hold the hospice or the ambulance company responsible if something happens. It_s also important to include a consent form for photos, in case any are taken. Typically, family members don_t require signatures.
Occasionally, an activity or service provider also requires a release. “Effective communication and understanding is the biggest thing,” Schaulis says.
Finally, provide access to digital cameras for the family members to record the journey. “Sometimes the journey isn_t so much for the patients, but for the survivors,” Berry says.„
It_s crucial to figure out which participants will pay for any necessary expenses. In the Colorado program, the ambulance company charges the patient the regular hourly rate and provides insurance coverage. Berry notes that the public relations his agency has received in return is priceless.„
Grants and donations help offset the costs. Because the hospice is a non-profit organization, it can raise money for the program. “The generosity still amazes me,” Schaulis says. Grants and awards from the community help, but Berry says the donations really started pouring in when the program was highlighted in the local media.
As the program in Colorado developed, the protocols were refined, often based on a specific experience.
One time an avid Harley biker wanted to hang out with his fellow bikers at an outdoor bonfire. During the festivities, the patient had a seizure. Several bikers became upset with what appeared to them to be a lack of medical response. “There were some unnerving moments,” Berry says. After that, protocols were created to make sure the people involved understood the limitations of providing medical care to hospice patients.
Once, a hospice volunteer offered to go along with the family and film the outing. The idea caught on, and now the program includes a video option. Originally, high school students were recruited to shoot the video. Today, donations help cover the cost of a professional videographer. Schaulis says having the video is important to the family. “They have a lasting memory of that day,” Schaulis says.
Making the Journey
For the most part, the EMS caregiver_s job is simply to be present and observe. Berry calls it “being there, but not there.” In the case of hospice patients who don_t have family, “we become that family,” he says.
Berry acknowledges that participation in the program is emotionally draining, but he stresses how important it is for caregivers to recognize their place. “What you are doing is bearing witness to goodbye, and sometimes that is hard,” he says. “But it_s important to remember that this is not your journey; it_s theirs.”„
He also believes the program can be an excellent way to teach new paramedics to see patients as more than their disease. “Sometimes we hide behind the medicine,” he says. The one-to-one nature of the program teaches that helping doesn_t always mean solving the problem. The key is compassion and a willingness to just be present.
“Kim was very good at it. She had a kind presence,” he says of his former partner. Talking about Madison is bittersweet for Berry. She died in April 2005 at the young age of 44. Sentimental Journey is her legacy, Berry says. He notes that it wasn_t an easy decision to continue participating in the program without her. However, the philosophy he learned from the Sentimental Journey patients helped him. “You live until the moment you die,” he says.
Berry admits that the program has been a lifeline for him. “It keeps me emotionally balanced.” After nearly 30 years as a paramedic, witnessing man_s inhumanity to man, he says it has helped to refocus his priorities. “You go home and hug your kids a little tighter,” he says. “You need those reminders in your life sometimes.”
With Berry_s help, Sentimental Journey programs have begun across the country. To give new programs a boost, he posts the protocols and other documentation for the Colorado program on his Web site (www.iamnotanambulancedriver.com). For those considering starting their own journey, Berry guarantees, “It will be the ride of your life.”JEMS
Teresa McCallion,EMT-B, is a freelance public safety writer living in Bonney Lake, Wash.