BY JOHN SPONHOLTZ
Hospice care is one of the few aspects of modern medicine that is newer than emergency medical services (EMS). The first hospice was founded in 1967 in suburban London, England, by Dame Cicely Saunders. Saunders then traveled to the United States, speaking to medical and nursing students at Yale University. Florence Wald, president of the Yale School of Nursing, resigned her position to establish the Connecticut Hospice in 1971. This was the first hospice to open in the United States, and it began seeing home patients in 1974. Unity Hospice (then known as Bellin Hospice) followed in 1977.
More and more, the worlds of hospice and EMS are intersecting. EMS is often used for interfacility transports of patients in the last stages of life. With hospice care, many patients are given the choice of where to reside. This may include the house or apartment they have occupied for many years, the home of a family member, or an assisted living facility or other residential type facility. Hospice teams visit the homes on a regular basis. The hospice team includes a registered nurse (RN)/case manager, a social worker, a certified home health/nurse’s aide (CNA), a chaplain, and volunteer staff. This interdisciplinary team (IDT) works in concert with the hospice physician medical director, the patient’s attending physician, and ancillary staff to provide for the patient’s ongoing needs including symptom management. These symptoms may include-but are not limited to-pain, shortness of breath, anxiety/restlessness/delirium, and psychosocial and spiritual issues. Hospice care covers the costs of staff visits, medications related to the hospice diagnosis, and durable medical equipment such as a hospital bed and an oxygen concentrator.
Four Levels of Care
There are four levels of hospice care defined by Medicare.
Routine care. This happens in whatever place a patient may call home and involves routine scheduled visits by all staff. Skilled nurses visit a minimum of once a week. They may be the primary RN or a licensed practical nurse (LPN) and cover symptom management, pharmaceutical and disposable supplies, skin integrity, and other issues within their scope of practice. It is not uncommon for patients to see nursing staff more often. An example of this would be daily contact with a patient using computerized ambulatory drug delivery with patient-controlled anesthesia to monitor pain level, available medication level, and need for titration to achieve and maintain optimal pain control and patient activity level.
Crisis care. This was developed to assist patients and families with exacerbations of symptoms. At this level of care, all aspects of the IDT swing into gear in the home. The emphasis is most often within the nursing realm of skilled nurses and CNAs, but social workers and chaplains aid the family in understanding and coping with what may be happening with their loved one, the interventions being put into place, and the decline of a patient’s condition. There are minimum standards set by Medicare; this includes a minimum of four skilled nursing hours and four CNA hours within a 24-hour time frame (midnight to midnight).
Respite. This is a five-day period meant to give the caregivers a break from their exhaustive duties. Respite care may take place in a hospice residence, at a contracted skilled nursing facility, or at a hospital as an inpatient. This may allow a family to regroup after providing long periods of 24/7 care or to attend a family event that would otherwise not be possible.
General inpatient-hospice related (GIP). This level of care is most often used at hospitals where patients are acutely admitted with new diagnosis. GIP admission may also happen when there are new, severe symptoms from an existing disease process. This may be from the community, from the emergency department (ED), or from a nearby clinic. Intravenous (IV) therapy for aggressive symptom management is often used as a rationale for GIP admission. This may include titration of opioid analgesics, antiemetics, anticonvulsants, or antianxiety medications. Once symptoms are controlled, medications may be changed to routes and doses that may be given in the patient’s home. Also, a patient may have a change that does not allow him to return home. In this care, the hospice IDT assists the family in placing the patient in the most appropriate facility and to adjust to this change. Should a hospice patient or family member call 911, the EMS transport as well as the hospital ED visit may not be covered by the hospice, private insurance, or Medicare. If an EMS provider is aware that it is dealing with a hospice patient, it is strongly advised that EMS personnel contact BOTH online medical control and the hospice agency for guidance.
Working with EMS
Under most circumstances, patients and families are instructed that they should no longer call 911 for assistance; the managing hospice organization should handle all patient care issues. Often, EMS is summoned to assist those caring for a family member or summoned by the patient. This can happen for a variety of reasons, which may or may not be hospice related. Patient falls, pain that cannot be controlled in the home, ascites with need for a paracentesis, and a need for palliative sedation may all prompt notification of EMS. It is rare, but there are times when the hospice provider will notify EMS. In cases where the transport is related to the patient’s hospice diagnosis, the cost of transport will be the responsibility of the hospice provider.
The interaction with hospice and EMS is best when there is some amount of coordination ahead of time. A hospice agency should coordinate in advance with EMS providers operating within their service area. This may lead to dispatch protocols specific to known hospice patients, often responding nonemergently and without lights and sirens.
Falls are a very common etiology resulting in an ambulance response. Returning a patient to his bed or wheelchair is often the only service needed and may only require one or two responders. If a patient has an injury necessitating further ED evaluation, pain control may be necessary. EMS providers with knowledge of the common comfort medications may have the option of using these medications for the best outcome of the patient. Early contact with online medical control and the hospice agency providing care for the patient streamlines this process.
It is important for EMS to be familiar with the medications used in hospice care. Many hospice agencies place “comfort packs” in hospice patients’ homes, which are the medications most often used for symptom management of hospice patients and include liquid morphine syringes (oral route), lorazepam tablets, haloperidol tablets, and a small amount of liquid atropine. Morphine liquid (Roxanol™) is administered by oral (PO) or buccal (BU) route to control pain and shortness of breath. It is most often in a concentration of 20 mg/mL; a typical order is five to 10 mg every hour as needed. Lorazepam (Ativan™) is administered by PO or sublingual (SL) route to control anxiety, restlessness, and as an adjunct for nausea and shortness of breath. Lorazepam tablets are 0.5 or 1 mg, and a typical starting order may be one tablet every four hours as needed. Haloperidol (Haldol™) is administered by PO to control nausea and delirium. Haloperidol tablets are 0.5, one, or two mg, and orders may start at one tablet every hour as needed. Atropine one-percent ophthalmic is administered by SL to control respiratory secretions and congestion. A typical atropine dose is one to two drops by SL every four hours as needed.
Another factor in hospice is that patients without an ability to swallow may take a variety of medications rectally [per rectal route (PR)]. This may include patients with esophageal cancer or patients without an ability to swallow related to rapid decline or advanced dementia.
One of the great myths of hospice surrounds the use of morphine. Patients, their families, and unfamiliar healthcare providers may believe that morphine is often overused, leading to sedation of the patient and hastening the end of life. This belief is often one of the great struggles hospice providers must overcome to provide for the greatest comforts of the patient.
A “Do not resuscitate” (DNR) order may also complicate a situation when EMS staff is in the home of a hospice patient. Although it is strongly encouraged that hospice patients have a valid DNR, it is not mandated. This often results in conferences with EMS, the hospice agency, and online medical control. “Allow a natural death” is a verbiage used in some areas to more accurately describe a DNR. EMS personnel should also remember that, in most states, it should employ comfort measures with a DNR patient. Treatment of symptoms such as pain, shortness of breath, and agitation should be addressed and not ignored. Appropriate care listed in the state of Wisconsin’s DNR form includes clearing the airway, administering oxygen, positioning for comfort, splinting, controlling bleeding, providing pain medication and emotional support, and contacting the hospice or home health agency if either has been involved in patient care. Physician Orders for Life-Sustaining Treatment Paradigm (POLST) forms (www.polst.org) are used in many states and offer further options to terminal patients.
EMS personnel must reference online medical control and hospice agencies to avoid complications and ensure that the patient’s wishes are being followed. For example, a POLST form may indicate that continuous positive airway pressure is deemed acceptable by the patient, but it may not be covered by hospice. EMS may initiate IV fluids, which may or may not aid a dying patient.
This has been a brief introduction into hospice and how EMS may be involved with the care of a hospice patient. Additional resources may be found through your local hospice providers, the National Hospice and Palliative Care Organization (www.nhpco.org), the End-of-Life/Palliative Resource Center (www.eperc.mcw.edu), and the Center to Advance Palliative Care (www.capc.org).
JOHN SPONHOLTZ, RN, CHPN, AEMT, is a case manager with Unity Hospice in Green Bay, Wisconsin, and a member of the Tisch Mills (WI) Fire Department. He is a former line officer and command staff member for the county hazmat team, a CPR-BLS instructor, and a board-certified hospice and palliative registered nurse.