Industry News | Jul 16, 2026 | No Comments |
Improving communication in end of life care
Communication failures leave families unprepared at the end of life, warns Ombudsman
The Parliamentary and Health Service Ombudsman (PHSO) has called for urgent improvements in how health professionals communicate with patients and families approaching the end of life, warning that poor conversations continue to cause avoidable distress long after a loved one has died.
In a new report, Conversations that matter most: Improving communication in end of life care, the Ombudsman says communication failures remain the most common problem identified in complaints about palliative and end of life care. The findings are based on more than 1,000 complaints received since 2020, together with interviews with bereaved families and healthcare professionals.
The report concludes that conversations about dying often happen too late, families are not kept properly informed as conditions deteriorate, and vital information is frequently lost when patients move between hospitals, community services and care homes.
Families left with lasting regret
The Ombudsman says communication failures do more than affect the quality of care. They can shape how families remember a loved one’s final days for the rest of their lives.
Many relatives described being unaware that someone was approaching the end of life until only hours before they died, while others said they were never fully informed about diagnoses, treatment options or changes in condition.
One family told investigators:
“What you’re wanting as a family is for it to be a peaceful time where the family can spend some quality time and talk about memories. I don’t have that. And I can’t take away those scars.”
The report also found examples where patients themselves were not told promptly that their condition had become terminal, leaving them with little opportunity to prepare or discuss how they wished to spend their final weeks.
Conversations are being missed
The Ombudsman found repeated failures to discuss:
• prognosis and likely life expectancy
• patients’ wishes about future treatment
• where people would prefer to receive care or die
• who they wanted involved in decisions
• advance care planning before a crisis develops
The report highlights that advance care planning should be a series of person-centred conversations taking place while someone still has the capacity to make informed choices, rather than something left until the final days of life. It points to existing guidance, including the ReSPECT process and the Government’s Universal Principles for Advance Care Planning, but says opportunities to use them are often being missed.
For Independent Living readers, this reinforces the importance of discussing future wishes early, particularly for people living with long-term or progressive conditions.
Clinicians also face barriers
Healthcare professionals interviewed for the report acknowledged that conversations about death and dying are among the most difficult aspects of their work.
Many said they had received little practical training in handling emotionally challenging discussions, while time pressures, fragmented services and frequent moves between care settings made communication even harder.
Several clinicians also spoke about a wider cultural reluctance to talk openly about death, both within healthcare and society more generally.
Better records and better training
The Ombudsman has made three key recommendations to support improvements.
1. It wants the forthcoming Modern Service Framework for Palliative and End-of-Life Care to include mandatory communication training for healthcare professionals, with greater emphasis on confidence, empathy and practical skills.
2. It also wants national measures that assess the quality of end of life care from the perspective of patients and bereaved families, rather than relying solely on clinical indicators.
3. Finally, it argues that end of life care should become a priority for the rollout of the NHS Single Patient Record, ensuring important information such as advance care plans, ReSPECT forms and DNACPR decisions can be accessed across hospitals, GPs, community teams, hospices and ambulance services.
Independent Living says:
Good communication at the end of life is about far more than simply passing on medical information. It gives people the opportunity to express what matters most to them, to involve those they trust and to make informed choices while they still can.
For disabled people and those living with progressive conditions, conversations about future care should not be viewed as “giving up”. Instead, advance care planning can help ensure that personal wishes are understood and respected, whatever happens in the future.
What is advance care planning?
We’ve produced a full guide explaining advance care planning, ReSPECT forms and DNACPR decisions. Read our guide here.
Ombudsman changing its name
The report also notes that the Parliamentary and Health Service Ombudsman will later this year become simply the Public Service Ombudsman.
The change is intended to make it easier for people to understand the organisation’s role, although its responsibilities and complaints service will remain the same.
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Further reading and resources
Bridging the Gap: why are end-of-life wishes not being heard?
Top tips for difficult conversations
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