Donnelly CB, Armstrong KA, Perkins MM, et al. Emergency medical services provider experiences of hospice care. Prehosp Emerg Care. 2018;22(2):237–243.
This paper describes a simple study conducted by surveying EMS providers on their experience caring for patients in hospice. Eighty-six EMTs and 96 paramedics returned the survey. Fifty-four percent had 0–5 years, 26% had 6–10, and 20% had more than 10 years of EMS experience. They were asked to define hospice and palliative care, and there was no difference between EMTs and paramedics in their knowledge of this issue.
The lack of difference persisted when comparing those with less than or greater than five years of experience. However, 36% of respondents believed that a Do Not Resuscitate (DNR) order was required for all hospice patients. Twelve percent believed that a DNR was required for patients receiving palliative care. Only 30% indicated they had received formal education on the care of hospice patients, with paramedics predominantly receiving more education than EMTs.
Open-ended questions on their comfort level caring for these patients revealed that family-related challenges, communication with hospice and ED providers, portability and use of end-of-life documentation, and the need for additional education were the common themes in their replies.
Doc Wesley Comments
There aren’t enough papers published on this critical subject. I agree with the authors’ call for more education and an evidence-based curriculum. Other than two or three slides in the initial EMT and paramedic curriculum, hardly any time is spent addressing this issue and providing us with the tools necessary to successfully navigate these challenging cases. Few agencies provide any continuing education and development on dealing with end-of-life care that goes beyond the standard, “If they don’t have a DNR then work them.” This must change.
I suspect many of you feel the same as the respondents when they stated that all hospice patients are required to have a DNR. What most people don’t realize is that being on hospice isn’t about DNR status. Rather, it’s about a change in your insurance status.
Hospice patients, both third-party or Medicare, sign their benefits away to the hospice program that is then paid to manage their end-of-life care. The goal is to avoid costly emergency care and unnecessary and expensive hospital admissions and procedures.
On the other hand, palliative care can be provided at any time in a patient’s life, whether or not their condition is terminal; it’s not tied to insurance benefits. Palliative care is, simply put, the provision of care designed to reduce the pain and suffering of a patient with a life-threatening condition. Like hospice, palliative care patients aren’t required to have a DNR. However, since the majority of both groups often do, it’s understandable how this confusion has occurred.
This alone creates yet another challenge and is a source of stress to our providers.
Medic Wesley Comments
I enjoy all the papers that Doc and I review. This study hit home for me.
I honestly felt the pain and frustration of these providers. Let’s face it, we’ve all been in their shoes at one time or another. We’re told to be empathetic with end-of-life patients and their families. We’re told to be professional. We’re threatened with the possibility of being sued for resuscitating patients with valid DNRs.
The bottom line is that too often we’re the ones at the patient’s bedside, faced with the task of being clergy, family, friend, provider and counselor. For some providers, there’s very little training or experience dealing with death.
Yet, often criticized by ED and hospice staff, our peers, family, and even judges, we’re left questioning ourselves as caregivers.
This study lists its limitations as being a small sampling of just one service. I think the response of these providers is well-stated and very reflective of EMS providers everywhere. This isn’t to say that some feel 100% comfortable in the role of end-of-life care, but I think most would agree that the training needed and desired for the amount of “hats” we’re required to wear is sadly lacking.
My experience of 35-plus years in EMS, Law Enforcement and the Coroners’ Office has allowed me an inside view of many scenarios of death and dying.
The “paperwork” described in the study is always a variable. State by state, we try to educate our providers about what form end-of-life documents should take. But, when faced with emotion, even the most legal and binding paper can become blurred.
How do we change that? As the study concludes, more training, education, and role-playing scenario training is needed to prepare our providers. How does one find the words to help others when we’re paralyzed with fear, sadness, and frustration? Many providers know what it’s like to have all eyes on them when the end of the patient’s life has occurred or is imminent.
We constantly talk about the burnout and stress disorders of the job. Isn’t it time that we, as educators and mentors, provide our EMS professionals with the tools they need to do the job and walk away knowing they made a difference?
Thank you to this group of researchers for bringing attention to this crucial subject.