Unmet palliative care needs in England and Wales: population-based estimates and future projections (2025-2050)

This study develops and applies rigorous methods to estimate that unmet palliative care needs currently affect approximately 32% to 61% of adult decedents in England and Wales, a proportion projected to rise significantly by 2050 due to population ageing, thereby highlighting an urgent need for increased investment in primary and community services.

The Gist

Imagine the healthcare system as a massive, bustling hospitality network designed to care for people during their final journey. As our population gets older, more people are arriving at the "end of the road," and the demand for a comfortable, dignified stay is skyrocketing.

This paper is essentially a traffic report and a weather forecast for that network in England and Wales. It asks a tough question: How many people are currently arriving at the end of their lives without the care they actually need, and how bad will the traffic get in the future?

Here is the breakdown in simple terms:

1. The Problem: The "Missing Seat" at the Table

The researchers realized that while we know the number of people dying is going up, we didn't have a good ruler to measure how many of them are suffering because they aren't getting enough help. It's like knowing a restaurant is full, but not knowing how many guests are sitting in the dark because the lights are broken.

To fix this, they invented a new way to measure "unmet needs" (people who are suffering or not getting enough care) using two different "flashlights":

• Flashlight A (The Symptom Check): Did the person have unresolved pain, anxiety, or other scary symptoms? (If yes, they needed more care).
• Flashlight B (The Service Check): Did the person feel their doctor didn't give them enough support? (If yes, they needed more care).

2. The Current Situation: A Crowded Room

When they shone these flashlights on data from 2022, the results were startling.

• The "Conservative" View: If we only count people who definitely failed on both checks, about 1 in 3 people (32% in England, 29% in Wales) are currently missing out on the care they need.
• The "Broad" View: If we count anyone who failed either check, the number jumps to nearly 2 out of 3 people (61% in England, 62% in Wales).

The Analogy: Imagine a lifeboat meant to save 100 people. Depending on how strictly you count who is drowning, you might find that 33 people are struggling, or that 66 people are struggling. Either way, the boat is dangerously under-equipped.

3. The Future Forecast: The Storm is Coming

The researchers then looked at the crystal ball (population projections) to see what happens by 2050.

• Because the population is aging (more people reaching 85+), the number of people needing this "lifeboat" care will grow significantly.
• They predict the number of people with unmet needs will rise by 21% to 26% in England and 14% to 19% in Wales.

Think of it like a growing queue at a theme park. The ride (palliative care) isn't getting faster, but the line (the aging population) is getting much longer. By 2050, the line will be so long that even more people will be left waiting in the rain without a ticket.

4. Why This Matters: The Call to Action

The paper concludes with three main takeaways for the people in charge (policymakers):

1. We need better maps: We now have a better way to measure the problem, so we can stop guessing and start planning.
2. The problem is bigger than we thought: Even with the most careful counting, a huge chunk of the population is being left behind.
3. We need to build more lifeboats: We can't just rely on hospitals. We need to invest heavily in local community care and family doctors. These are the "first responders" who can manage pain and support families right where they live, rather than waiting until the crisis hits.

In a nutshell:
This study is a wake-up call. It tells us that as our society ages, the gap between the care people need and the care they get is wide and will get wider. Unless we invest in better local support systems now, by 2050, we will have a massive number of people facing their final days without the comfort and dignity they deserve.

Technical Summary

Technical Summary: Unmet Palliative Care Needs in England and Wales (2025–2050)

1. Problem Statement

With global populations aging, the demand for palliative care is rising sharply. However, effective strategic planning is hindered by a lack of rigorous, standardized methods to estimate the population-level prevalence of unmet palliative care needs. Existing assessments often fail to provide reliable data on the scale of unresolved symptoms, concerns, or insufficient care provision, making it difficult to forecast future resource requirements or evaluate the equity of current services. This study addresses the critical gap in methodological frameworks needed to quantify and project unmet needs in England and Wales.

2. Methodology

The study employed a secondary analysis of data from a nationally representative post-bereavement survey conducted in England and Wales in 2022 ($n=1,194$). The researchers developed a dual-method approach to estimate unmet needs, which were then extrapolated to the broader population using mortality data and Office for National Statistics (ONS) projections.

Core Estimation Methods

Two distinct criteria were used to define "unmet needs" within the survey sample:

1. Symptom/Concern-Based (Method 1): Utilized the Integrated Palliative care Outcome Scale (IPOS). A score of $\ge$34/68 indicated unresolved symptoms and concerns.
2. Care Provision-Based (Method 2): Based on self-reported insufficient care provision by General Practitioners (GPs).

Statistical Aggregation

To provide a robust range of estimates, the study combined these methods into two composite metrics:

• Conservative Estimate: Individuals meeting both Method 1 and Method 2 criteria.
• Broad Estimate: Individuals meeting either Method 1 or Method 2 criteria.

Projection Framework

• Associations: Modified Poisson regression was used to examine associations between unmet needs and demographic variables.
• Extrapolation: Age-, gender-, and nation-specific sample estimates were applied to:
  • 2022 mortality data (for current prevalence).
  • ONS population projections (for future prevalence from 2025 to 2050).

3. Key Contributions

• Methodological Advancement: The study introduces and validates a dual-method framework for estimating unmet palliative care needs, offering both conservative and broad perspectives to inform policy.
• Granular Projections: It provides the first detailed population-level projections for England and Wales extending to 2050, breaking down data by age, gender, and nation.
• Strategic Insight: By contrasting symptom-based and care-provision-based metrics, the study highlights the complexity of defining "need" and underscores the necessity of investing in primary and community-based services.

4. Key Results

Current Prevalence (2022)

• Method 1 (Symptoms):
  • England: 247,993 adult decedents (46%).
  • Wales: 17,209 adult decedents (49%).
• Method 2 (Insufficient Care):
  • England: 244,612 adult decedents (46%).
  • Wales: 15,280 adult decedents (43%).
• Combined Estimates:
  • England: 32% (Conservative) to 61% (Broad) of decedents had unmet needs.
  • Wales: 29% (Conservative) to 62% (Broad) of decedents had unmet needs.

Future Projections (2025–2050)

Regardless of the estimation method used, the prevalence of unmet needs is projected to rise significantly due to demographic shifts:

• England: Projected increase of 21–26%.
• Wales: Projected increase of 14–19%.
• Demographic Impact: The largest absolute increase in unmet needs is expected among the $\ge$85 years age group.

5. Significance and Implications

• Policy & Planning: The findings indicate that current levels of unmet needs are critically high and will worsen without intervention. The data serves as a baseline for developing equitable, population-level strategies to improve end-of-life care.
• Service Investment: The study explicitly calls for increased investment in primary and community-based services to ensure high-quality symptom management and family support.
• Complexity of Needs: The authors note a limitation: current estimates do not fully account for the rising prevalence of multiple long-term conditions (multimorbidity), which will likely further increase the complexity of care needs beyond the projected figures.
• Research Direction: The study establishes a standardized approach for future research, enabling the evaluation of interventions and the monitoring of progress toward reducing unmet palliative care needs.