In the fall of 2015, units from Virginia's Fairfax County Fire and Rescue Department (FCFRD) were called to the home of an 84-year-old female having trouble breathing. They arrived to find the patient lying in bed with five relatives in attendance. She was unresponsive and appeared ill: Her skin was ashen, gray and cold, her lips were cyanotic, and she was breathing at a rate of six times a minute in a Cheyne-Stokes pattern.
As the crew established monitoring and applied oxygen, the family told them the patient was receiving hospice care and had a history of cancer. She had spoken with her family for much of the day but stopped in the afternoon. Her mental status continued to decline over the evening. The family had called because they interpreted her change in breathing as trouble breathing, and they were scared. They presented well-ordered paperwork and her Virginia DNR form.
Providers began a further conversation with the family. The paramedics explicitly told the family, “She is dying,” before asking “What were her wishes? Where did she want to die?” The family wanted to qualify their answers and had specific questions about different scenarios for ongoing care. Members were coming from out of town, but it would be hours before they arrived. What would happen if the patient were transported? How long would she live if left at home? Would the family members be able to see her in this circumstance or that?
This is a classic end-of-life care scenario. In this instance the patient had made her wishes clear to her family, and her family was able to honor and communicate them. Providers called online medical direction and requested to deescalate care. The crews then remained with the family at the patient’s side, explaining the normal changes that occur during the dying process. Approximately 45 minutes after their arrival, the patient died without any signs of distress.
A Longer Decline
There is currently an active epidemiological shift occurring in the United States. The Baby Boomer generation is aging into the elderly population—a population that is living longer than ever before.1 Medical practice and technology have also grown better at managing complex medical conditions, which has led to a longer decline at the end of life for many patients. With this transition comes an increasing use of almost every type of medical service, including hospice.
Since the first American hospice opened in 1974, there has been a steady increase in hospice utilization as Americans’ attitudes have shifted toward acceptance of palliative and end-of-life care, including dying outside the hospital. Given a choice, most Americans say they want to die at home, but despite this, most currently still die in hospital settings.2 Between 2017 and 2018 alone there was a 4.5% increase in utilization of hospice services, and that number is likely underreported. Nearly 1.5 million patients used hospice services for at least one day in the United States in 2017.3 EMS today is more likely than ever to encounter hospice patients.
Hospice agencies are primarily reimbursed through the Medicare hospice benefit (MHB), created in 1982 as an extension of Medicare Part A.4 Hospice does not operate on a fee-for-service reimbursement schedule—similar to EMS, reimbursement is based on the category of care an agency delivers at per diem rates.
There are four categories of hospice care: routine home care (RHC), continuous home care (CHC), inpatient respite care (IRC), and general inpatient care (GIC). According to the National Hospice and Palliative Care Organization, most reimbursed days for MHB recipients are for routine home care, which were estimated to be 98.2% of all reimbursed days in 2017. The vast majority of these RHC days were for patients at home or in skilled nursing facilities.3
Routine home care is currently paid in a “U-shaped model.” The FY 2019 per diem rate is $196.50 for days 1–60 of care, with a lower rate ($154.41) for days beyond 60. Hospices can also receive a modest revenue increase (service intensity add-on, or SIA) in the patient’s last seven days of life if certain criteria are met.5
EMS transport and hospitalization are significant financial burdens to hospice agencies responsible for paying for an enrolled patient’s medical care.6 The rationale for this is partly to incentivize hospice providers to provide a level of care such that patients will not need to be hospitalized. Another part goes back to the establishment of the MHB, which operates on the premise that patients should not receive concurrent hospice care and curative therapies.
At first glance, particularly from a purely economic perspective, there seems to be no reason for EMS to become involved with hospice patients at all; as one study found, the care for patients who remained enrolled in hospice was one-fifth that of disenrolled patients. They made fewer trips to the emergency department, were less likely to spend time in the ICU, and were less likely to die in the hospital.7
After this call the FCFRD was left with questions, chief among which was, “How often does this happen?” For Fairfax County the answer was unexpected. A review of ePCR data suggested the agency ran about 150 hospice patients a year—one every 2.5–3 days. Importantly, this number did not include lift-assist and other assistance calls coded as “public service.” For reference, Fairfax County has about 400 working CPRs per year, and almost 100,000 fire and EMS calls combined.
The follow-up questions were, “What are we currently doing?” and “What else should we be doing?” FCFRD used this call as a case study and reached out to area hospice agencies for answers. Multiple healthcare agencies provide palliative and hospice services in the area. Capital Caring Health is the largest hospice provider in the National Capital Region, with more than 800 employees and well over 1,000 patients in its census at any given time (placing it in the top 1% of hospice providers by size). Capital Caring Health’s data looked the same as FCFRD’s: About 150 patients per year were being transported by EMS from the Capital Caring Health service area, including Fairfax County, representing a major financial burden for both the patients and Capital Caring Health.
Over the next three years EMS and hospice agencies worked to further define the problem and develop solutions. Like many EMS organizations, FCFRD transports many hospice patients to the hospital each year, many of whom might receive more goal-aligned care at home. Because EMS and hospice have traditionally—at least on the surface—had seemingly opposing goals in patient care, the solution needed to fit both the strengths and underlying cultures of both agencies.
Both Capital Caring Health and FCFRD recognized one gap in care was the response time for a hospice nurse to reach a patient’s bedside. This is one of the biggest strengths EMS brings to the table: a five-minute response time from dispatch to patient side. Capital Caring Health estimated the emergency response window for a hospice nurse can be up to two hours. It is in this window that 9-1-1 is most likely to be called, regardless of whether the patient or family called hospice first. The other relevant EMS strength is a workflow that regularly involves remote consultation with online medical direction. Performing a patient assessment and then calling for orders or consultation is a defining feature of EMS.
There are four main, predictable reasons 9-1-1 is called to the home of a hospice patient:
The patient has worsening symptoms related to their hospice diagnosis;
The family or patient is scared or unsure about something related to the hospice diagnosis or care;
The patient is having an unrelated medical emergency, has suffered an injury, or has placed a public service-type call;
Equipment failure—e.g., feeding tube, catheter, O2, etc.
While all four can potentially be managed outside the hospital, the first two categories represent an excellent opportunity for EMS to work with hospice agencies to address patients’ needs at home. Some EMS agencies, such as MedStar in Ft. Worth and Ventura County’s in California, have had significant success with mobile integrated health (MIH)-type hospice collaborations focused on limited pools of either patients or providers. An alternative approach could involve tiered training for all frontline providers so the closest units can immediately respond and no new resources have to be fielded.
A Hot Handoff Model
When a hospice patient or family calls 9-1-1 because they have hospice-related concerns, paramedics will arrive at the home and begin to gather history and assess the patient as usual. To aid in patient identification, hospice can complete a record using File of Life or some other familiar system on patient intake. File of Life has been used for history-gathering and patient identification by EMS agencies for years, with success in both distribution and utilization.
Once the EMS team understands the situation, whether it’s a symptom crisis or lack of provider education, EMS can call the hospice agency using a dedicated phone number for direct access to a clinician. This access will allow for the seamless integration of the field team with the expert care providers.
Once this link is established, the paramedic lead can facilitate a structured conversation between the hospice clinician and patient or their care provider. They can share information from the paramedic assessment while the clinician accesses the patient’s most recent documentation and orders. If orders need to be clarified or updated, the clinician can do so in real time.
In general, if a patient requires additional medication, either a new baseline dosage or a rescue dose, there are options ranging from EMS-assisted dosing up through administration of meds from the ambulance drug bag. Several factors can influence this, from state regulation to agency costs. Paramedic-assisted, caregiver-administered drug administration from a preexisting patient-supplied comfort kit brings a number of advantages. These include avoiding out-of-service/restock time, removing cost and narcotic accountability concerns, simpler compliance with state regulations and policies, and alleviating provider concerns about being the person who “pushed the last dose of medication.” The paramedic is well suited not only to assist with education regarding medication administration but also to clarify and communicate new orders. This is especially helpful for anxious or unsure caregivers—most of whom are family members without formal medical training. Once the patient is comfortable and well managed, the crew completes transport-refusal paperwork to appropriately document the call.
Among the considerations in designing a program is whether new, custom paperwork is needed to guide EMS providers through a patient’s standing orders. Agencies may find POLST (Physician Orders for Life-Sustaining Treatment) is both already standardized in most states and apt for this setting. Most states have a standardized portable medical order, though the acronym varies. While it will vary by state regulation, EMS agencies may be allowed to follow the orders conveyed in the POLST, particularly if they do not exceed provider scope of practice.
Concerns and Solutions
A number of concerns can arise in developing a hot-handoff program. Resource utilization for type of call will depend strongly on how the program is operationalized. Currently the standard practice of arriving, assessing, treating, and transporting these patients, along with the requisite paperwork, often takes 60–90 minutes. Any agency implementing such a program would need to both predict and track the impact on unit-hour utilization and overall resource availability. This can also be impacted by which resources stay on scene, particularly in an ALS first-response agency, by the staffing patterns of partnering hospice agencies, and by the desire for “hot” (face-to-face) versus “warm” (hospice nurse not yet physically on scene) handoffs.
Because a program like this requires paramedics to enter a home and then potentially leave without transporting the patient, the question of whether this counts as home healthcare was raised early. Home healthcare is a separate class of care and requires different agency and provider certifications in most states. This can put programs in a legal gray area. However, in general, if paramedics are called to the scene (as opposed to conducting scheduled visits) and perform an assessment, consultation, and potentially some education within their scope of practice, home health regulations will likely not impact program implementation.
Liability has also been raised as a concern. This may not be a significant issue for an EMS/hospice interface, as hospice patients are expected to die as part of their normal course of care. However, as no-load patients in general represent one of the most significant areas of EMS liability and family/caregiver dynamics surrounding end-of-life care can at times be conflicted or challenging, it can be important to work out standardized, written communication framed in the context of patients' goals of care. EMS should not be expected to actively discourage transport, which should remain an option during every patient encounter even as paramedics may seek to refocus treatment plans on the patient’s wishes and existing hospice care plan.
The elderly population continues to expand and will keep placing greater demands on the medical system. Because of this, EMS contact with hospice patients will also continue to grow. There is an opportunity now to form effective nontraditional partnerships that will ensure these patients are appropriately managed in a way that meets their care goals and aligns the mission of EMS with the other caregivers involved in their care. Rather than deliver a service that opposes the care these patients are already receiving, EMS and hospice should try to coordinate wherever and whenever possible. It is our job to honor our patients’ wishes at end of life, and there are experts in almost every community that can help us achieve this.
1. Cohen J, Deliens L. Applying a Public Health Perspective to End-of-Life Care. In: Cohen J, Deliens L, eds. A Public Health Perspective on End of Life Care. Oxford University Press, 2013; 3–18.
2. Fischer S, Min SJ, Cervantes L, Kutner J. Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults. J Hosp Med, 2013; 8(4): 178–83.
3. National Hospice and Palliative Care Organization. NHPCO Facts & Figures, 2018 Edition, www.nhpco.org/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf.
4. Davis PA, Binder C, Gopalan SV, et al. Medicare Primer, 2017. Homeland Security Digital Library, www.hsdl.org/?abstract&did=799822.
6. Zavadsky M, Hooten D. Mobile Integrated Healthcare: Approach to Implementation, 1st ed. Burlington, MA: Jones & Bartlett, 2016.
7. Carlson MDA, Herrin J, Du Q, et al. Impact of hospice disenrollment on health care use and medicare expenditures for patients with cancer. J Clin Oncol, 2010; 28(28): 4,371–5.
Howard Capon, MPH, NRP, is a firefighter-paramedic and paramedic preceptor for Fairfax County Fire and Rescue Department, Fairfax, Va. He has been involved with the EMS and fire services in Virginia for 15 years.
Matthew Kestenbaum, MD, FAAHPM, is a board-certified hospice and palliative medicine physician and chief medical officer for Capital Caring Health, a nonprofit organization providing advanced-illness care throughout Virginia, Maryland, and the District of Columbia. He is chair of the Program Standards Committee for the National POLST and medical director of the Virginia POST Collaborative.
Amy Vandenbroucke, JD, has served as executive director of National POLST since 2013 and is an assistant professor at Oregon Health & Science University. Previously she was OHSU legal counsel for six years and an associate director of the OHSU Center for Ethics for four.