After being dispatched to a lift assist call, two novice EMTs proceeded to the address without lights or sirens. They grabbed their gear bag and walked up the stairs to the home. Knocking on the door, they announced “EMS!” and heard a frantic “Come in!” followed by, “he has a DNR.”
They entered the living room of the home to find a middle-aged patient lying on the floor and barely breathing. His wife knelt beside him presenting the state-issued Do-Not-Resuscitate (DNR) form. They quickly requested an Advanced Life Support (ALS) response unit, placed the patient on oxygen, and began taking a history.
He was an advanced cancer patient enrolled in hospice. His wife had been instructed by the 24-hour hospice emergency phone line to give him doses of his medication to help with his severe and distressing symptoms near the end of life. Later that evening he slid to the floor and the hospice center called 911. There was no hospice nurse dispatched or on scene.
The crew’s backup quickly arrived, and the supervising paramedic had a long talk with the patient’s wife about what the “next steps” looked like. She was adamant that he was to stay in their home, and the crews waited with her while his heart’s electrical activity stopped. They gave their condolences, awaited the police arrival, and departed the scene.
For the two rookie EMTs, that call left many questions unanswered. What did hospice even mean? Why did the crew have to just wait for him to die? Did they do everything they could? The call could have gone much differently.
In fact, EMS training teaches EMTs to rush to the hospital or start CPR. However, what gave the crew the most comfort, is that this felt like the right thing to do. They were able to honor the patient’s preference to allow for a natural death at home with his family.
History of Hospice
In the United States, hospice originated after a talk given by British physician Cicely Saunders in 1963, Florence Wald, then-Dean of the Yale School of Nursing began developing the first hospice program in the United States.1
The services hospice provided were identified through shortcomings in hospital-based end-of-life care. These challenges included the lack of pain control, the lack of family involvement, and death typically in the hospital setting.1
Dean Wald and New Haven Hospital Chaplain Reverend Edward Dobihal developed a company called Hospice, Inc., to provide home-based hospice care with a team of nurses and clergy members.1 Despite initial state regulatory pushback, hospice was eventually recognized as a distinct form of healthcare with three basic types: in-home hospice, hospice facilities, and hospital-based hospice.1
Hospice Today
Today, more than 50 years after the introduction of hospice care into the United States, palliative care and hospice care have evolved as two overlapping but unique entities. Palliative care, or care that seeks to provide pain relief and symptom management, can be provided to patients at any stage of illness and in conjunction with curative treatment of their disease.
Hospice, on the other hand, is a distinct type of palliative care that requires a terminal condition with a prognosis of six months or less to live in order to be eligible.2 Furthermore, to enroll in hospice, patients must discontinue all treatments for their terminal condition besides those which reduce pain and other symptoms.
This change in paradigm from aggressive disease treatment in the hospital setting to symptom management in the home is the core tenet of hospice. Hospice services are required to provide 24/7 telephone support for patients and their families.3 Families are often instructed to use this hospice phone number as their “new 911.” Unlike many other fields of medicine, hospice considers the patient and their family in its care goals.
In addition to a philosophy of comfort-focused treatment near the end of life, hospice is also a unique insurance status. Insurance covers payment for clinicians, nursing staff, medical equipment, pain and symptom managing medications, social services, spiritual counseling, and grief counseling for family members.2
Annually, two million American Medicare patients are enrolled in hospice care.4 In 2020, the average length of stay in hospice was 97 days, or just over three months.4. Medicare covers the expenses incurred by patients on hospice care with a fixed daily sum of roughly $200.2
This means that hospice services are paid the same for days when little to no care was provided as on days when patients received a visit from a clinician or new medical equipment. In some scenarios, hospice patients may receive in-patient hospital care for a pre-determined number of days to give primary caregivers a rest or in the event of severe, acute pain or symptom development.5
While the goal for most hospice patients is to allow a natural death at home, many families and patients may be scared about distressing or difficult-to-manage symptoms near the end of life, or feel hospice agencies aren’t responding quickly enough, and may call the number they know best: 911.
In my case, EMS was activated by the hospice agency for what they believed was a simple lift-assist, something we were trained to do but the hospice company staff may not have been. While EMTs and paramedics can have the best intentions of treating these patients with compassion and dignity, their interventions may not always be what the patient wants. How can EMS better provide more goal-concordant care for these patients?
A Novel Solution
At the Yale New Haven Hospital Center for EMS Paramedic program, there is a new education solution for new paramedics: a hospice rotation. As a component of their initial education, and in conjunction with Connecticut Hospice in Branford, paramedics are exposed to hospice services to understand the goals of hospice care and appreciate how they can better treat this patient population.
The program includes a two-hour didactic portion followed by an eight-hour hospice facility shift and an eight-hour field shift with a hospice nurse. The program is designed to teach paramedic students about the basics of hospice care. It gives them the opportunity to engage with local hospice providers and understand the goals of hospice.
Although the goals of hospice care and EMS may seem at odds, novel solutions such as the paramedic student hospice rotation have the possibility of bridging the divide between the two. Such programs equip paramedics early in their training with:
1. An understanding of hospice resource capabilities,
2. An approach to providing comfort to actively dying patients, and,
3. The experience of communicating with their families who prefer a natural death of their loved ones at home.
Often compassion and reassurance are the best medicine for these patients and their families. Ultimately the goal is to empower EMS providers with the skills to provide the care that these patients and their families want. With these skills, a potentially challenging situation with hospice patients can become a dignified and privileged scenario where it feels like you are just “doing the right thing.”
Acknowledgments: The authors would like to thank the Yale Center for EMS and the Connecticut Hospice program for their contributions to this project.
References
1. Buck J. Policy and the Re-Formation of Hospice: Lessons from the Past for the Future of Palliative Care. J Hosp Palliat Nurs JHPN Off J Hosp Palliat Nurses Assoc. 2011;13(6):S35–43.
2. Hospice | CMS [Internet]. [cited 2023 Dec 27]. Available from: https://www.cms.gov/medicare/payment/fee-for-service-providers/hospice
3. Schmitt-Thompson Clinical Content [Internet]. [cited 2023 Dec 27]. Triage of After-Hours Hospice Calls. Available from: https://www.stcc-triage.com/stcc-newsletter-blog/triage-of-after-hours-hospice-calls
4. Hospice Facts & Figures [Internet]. NHPCO. [cited 2023 Dec 2]. Available from: https://www.nhpco.org/hospice-care-overview/hospice-facts-figures/
5. Routine, Respite, General Inpatient, and Continuous Care [Internet]. Grane Hospice. [cited 2023 Dec 27]. Available from: https://granehospice.com/services/routine-respite-general-inpatient-and-continuous-care/
