Identifying community nurses contributions to end-of-life care: an online survey study

This online survey of 1,471 UK community nurses reveals that while they dedicate a significant portion of their time to end-of-life care, systemic barriers like staff shortages frequently lead to the deferral of critical visits, highlighting an urgent need for workforce investment to meet growing global demand.

The Gist

Imagine the healthcare system as a massive, bustling city. In this city, community nurses are the "utility workers" who go into people's homes to keep the lights on, fix the pipes, and make sure everyone is safe. They do everything from changing bandages to managing complex medical equipment.

This study is like a giant "check-in" with over 1,400 of these utility workers to ask: "How much of your day is spent helping people who are at the very end of their lives?"

Here is what the study found, broken down into simple concepts:

1. The "Hidden" Heavy Lifting

For a long time, people thought community nurses mostly did general health checks and that "end-of-life care" was a small, special part of their job.

• The Reality: The study found that for nurses working in general community and district services, nearly a quarter (23.5%) of their last shift was spent caring for people in their final year of life.
• The Analogy: It's like a firefighter who spends 25% of their shift putting out fires, even though they are also responsible for checking smoke alarms and teaching safety classes. The "firefighting" (end-of-life care) is a huge chunk of their day, not just a side task.

2. The "Too Many Appointments, Not Enough Time" Problem

The study asked a hard question: "Did you have to cancel or postpone any visits to dying patients because you were too busy?"

• The Reality: Yes. About 1 in 10 nurses admitted they had to defer or cancel a visit to a patient at the end of their life during their last shift.
• The Analogy: Imagine a chef in a kitchen who has to cook a special, delicate dessert for a guest who is very sick. But the kitchen is so short-staffed and the orders for regular meals are so high that the chef has to say, "I'm sorry, I can't make the dessert right now." The patient still needs that care, but the system is so overwhelmed that it gets pushed aside.

3. The "Specialist" vs. The "Generalist"

The study looked at two types of nurses:

• General Community Nurses: They do everything for everyone.
• Specialist Palliative Nurses: They only care for people at the end of their lives.
• The Surprise: You might think the specialists would be the ones struggling to keep up. However, the study found that specialist nurses were actually twice as likely to have to postpone a visit compared to general community nurses.
• The Analogy: The general nurses are like a "Swiss Army Knife" team; they have to prioritize the most urgent, life-saving tasks first. The specialists are like "Master Chefs" who have more time per patient but face a different kind of pressure where they have to make tough choices about which complex care plans to delay because the demand is just too high.

4. The "Unfinished Homework"

The study also asked: "Did you have to do a job, but you couldn't do it as well as you wanted to?"

• The Reality: Half (52%) of the nurses said they had to provide some end-of-life care that didn't meet their own professional standards.
• The Analogy: Imagine a teacher who wants to give every student a personal, 10-minute chat about their feelings. But because there are 30 students and only 30 minutes, they have to rush through the chats, giving everyone only 1 minute. The care was given, but it wasn't the good care the nurse wanted to give. The things that suffered most were emotional support and coordinating care (making sure different teams talk to each other).

5. Why is this happening?

The nurses gave very clear reasons for these cancellations and rushed care:

• Not enough hands: There are simply too few nurses for the number of patients.
• The "Reactive" Trap: Because they are so busy, they can only do "emergency" care (like fixing a crisis) rather than "proactive" care (planning ahead to prevent a crisis).
• Logistical Nightmares: Sometimes they can't visit because the patient doesn't have the right medicine, or the pharmacy is closed, or the paperwork is stuck in a digital system.

The Bottom Line

The paper concludes that community nurses are doing a massive amount of vital work for people dying at home, but the system is running on empty.

• The Metaphor: The healthcare system is like a bridge that is being asked to hold more and more weight (an aging population) but hasn't been reinforced with more pillars (more nurses and funding).
• The Solution: The authors say we need to invest more money and resources into these nursing teams. If we don't, important care will continue to be left undone, and patients will suffer.

Important Note: The authors emphasize that this research is a "snapshot" of what is happening right now. They are not saying this is how it should be, but rather highlighting that the current system is struggling to keep up with the demand, and without more support, the quality of care for the dying will continue to suffer.

Technical Summary

Technical Summary: Identifying Community Nurses' Contributions to End-of-Life Care

Problem Statement
Global healthcare systems face rising demand for community-based end-of-life care (EoLC), driven by ageing populations with complex needs. While community nurses are central to delivering this care, the specific volume of their daily work dedicated to patients in their last year of life remains unclear. Furthermore, it is unknown to what extent rising demand and resource constraints force nurses to defer, cancel, or deliver EoLC visits below professional standards. Existing data on the proportion of time community nurses spend on palliative care varies significantly (ranging from 5.6% to 21%) due to differing definitions and measurement criteria, and there is a lack of quantification regarding "work left undone" in this sector.

Methodology
The study employed an anonymous online survey with a multimethod analysis approach, grounded in a critical realist framework.

• Participants: 1,471 registered nurses, nursing associates, healthcare assistants, and support workers across the United Kingdom (England, Scotland, Wales, Northern Ireland). Recruitment utilized professional networks, social media, conferences, and snowball sampling between April 28 and June 27, 2025.
• Definitions: EoLC was defined as direct clinical input for patients considered "likely to be in their last year of life."
• Data Collection: The survey captured demographic data, details of the respondent's most recent clinical shift (duration, overtime, patient load), the proportion of time spent on EoLC, and instances of deferred, cancelled, or unsatisfactory care. An optional open-ended question solicited reasons for deferrals.
• Analysis: Quantitative data were analyzed using R (v4.5.1) with descriptive statistics, inferential tests (Kruskal-Wallis, Chi-square, Fisher's exact), and regression models (linear and logistic). Qualitative data from free-text responses underwent reflexive thematic analysis to identify recurring reasons for deferred care.

Key Results

• Workload Distribution: The median proportion of the last clinical shift spent providing EoLC was 26.3% overall. Community and district nurses spent a median of 23.5% of their shift on EoLC, whereas specialist palliative care nurses spent 66.7%. Specialist nurses also cared for a higher median number of EoLC patients per shift (4 vs. 2).
• Deferred and Cancelled Care: 11.6% (171/1471) of respondents reported deferring or cancelling at least one EoLC visit during their last shift. This was significantly more common among specialist palliative care nurses (24%) compared to community and district nurses (10.4%). In an adjusted logistic regression, specialist nurses were 2.48 times more likely to defer visits than community nurses.
• Unsatisfactory Standards: Among those providing EoLC, 52% reported delivering one or more aspects of care below their professional satisfaction. The most frequently cited areas were psychological care/support (23.2%) and care coordination (14.7%).
• Reasons for Deferral: Thematic analysis of 163 responses identified three primary drivers:
  1. Demand exceeding capacity: Chronic understaffing, high workload, and long travel distances forced reactive rather than proactive care.
  2. Clinical prioritisation: Urgent, unpredictable clinical needs (e.g., symptom crises) necessitated postponing less urgent EoLC visits, causing ethical distress.
  3. Logistical and systemic barriers: Delays in accessing medications/equipment, poor discharge planning, and inadequate information continuity.

Significance and Claims
The paper claims to provide the first large-scale quantification of EoLC contributions by UK community nurses, revealing that EoLC constitutes a substantial portion of their daily work (median 23.5% for community/district nurses), challenging narratives that view it as a minor component of non-specialist practice.

The study highlights a critical "demand versus capacity" gap where clinically important care is routinely left undone or deferred. The authors argue that current workforce planning underestimates the EoLC burden on community nurses. They posit that sustained investment in core and specialist nursing services is urgently required to meet global demand. The findings suggest that without system-wide integration and increased capacity, the normalization of deferred care and sub-standard practice poses risks to patient safety and person-centred care. The paper concludes that these issues are transferable to other publicly funded healthcare systems facing similar demographic shifts.