What matters most: Putting people at the heart of end-of-life care
End-of-life care can involve some of the most difficult situations that people, families, carers, and health professionals will ever face. A sudden bleed, seizure, spinal cord compression, or diabetic emergency can be frightening and unpredictable. In those moments, the instinct can be to respond to the medical emergency first and ask questions later.
But a series of podcast conversations with palliative care professionals from St Barnabas Hospice show another way.
Click on the links below to listen to these conversations:
Ep 95. Personalisation in palliative care emergencies and complex plans of care
Ep 96. End of Life bleed: Planning for the unthinkable
Ep 98. Malignant Spinal Cord Compression: Planning for care in the community
Ep 99. Palliative care emergencies and seizure management in the community
Ep 101. Supporting better end-of-life care for people with diabetes
Across the podcasts, one message comes through again and again: good care starts with the person, not the condition.
It means understanding what matters to someone, planning ahead, recognising what they and the people around them can do, and giving everyone the confidence and support to act when circumstances change.
This is personalised, strengths-based care at perhaps its most important.
Start with what matters to the person
Personalised care is not simply about choosing between different treatments. It begins with a much more human conversation:
- What matters to you?
- What do you want?
- What are you hoping to protect?
For some people approaching the end of life, being at home with the people they love is more important than pursuing every possible clinical intervention.
As Kate Sutton, Specialist Palliative Care Nurse and Urgent Care Practitioner, explains in the introductory podcast (Episode 95):
“Lots of people as well want to stay at home and surrounded by what's important to them.”
The complex plans of care discussed across the series were developed for exactly these situations - including end-of-life bleeds, seizures, malignant spinal cord compression, and diabetes - where someone has decided that remaining at home is their priority.
Angela Wilson, Community Macmillan Nurse, describes person-centred care as beginning with conversations with the person, their family, carers, and loved ones:
“It’s about looking and having discussions with the patients, their family, their carers, their loved ones about what’s important to them… really focusing on what their values and wishes are and what matters to them most.”
That principle runs through every episode. The clinical condition matters, but it sits within the context of somebody's life, relationships, priorities, and choices.
There is no ‘one-size-fits-all’
Personalisation also means resisting the temptation to assume that everyone with the same condition wants the same thing.
The diabetes episode (Episode 101) makes this especially clear. Some people may want to continue closely monitoring their blood sugar. Others may decide that frequent tests and tight control no longer contribute to the quality of life they want.
Dr Jess Weller, Consultant in Palliative Medicine puts it simply:
“There’s no one-size-fits-all.”
One person may want to remain at home wherever possible but accept a short hospital admission if their blood sugar becomes dangerously abnormal. Another may be clear that they do not want to return to hospital at all. Good care comes from balancing professional advice with those individual preferences.
The same applies to spinal cord compression. Rather than seeing the options as simply “hospital” or “no hospital”, professionals can explore what might work for that individual, perhaps including a one-off treatment that allows the person to return home quickly.
As Jess explains:
“You create this dialogue where it’s actually creating an individualised plan of care.”
Personalisation is therefore not about offering less care. It is about offering the right care for that person.
Plan early, before a crisis becomes a crisis
Perhaps the clearest shared message across the podcasts is the importance of preparation.
Many palliative emergencies are frightening, but they are not necessarily unexpected.
Someone with progressive brain disease may be at risk of seizures. Someone with spinal metastases may develop spinal cord compression. A person living with diabetes may experience dangerous changes in blood sugar as their appetite, medication, and physical condition change.
Knowing that means there is an opportunity to prepare.
Dr Jess Weller describes the aim as turning something unexpected and frightening into something understood and planned for:
“It becomes less of a palliative emergency as such and more of a palliative plan.”
That involves identifying risk, talking honestly about what might happen, and agreeing in advance how symptoms should be managed.
The diabetes conversation describes this as being “proactive and not reactive” - identifying people at risk and managing possible problems in advance rather than “firefighting” once someone becomes seriously unwell.
Planning is not about taking control away from people. Done well, it does the opposite.
As Jess says in the episode about end-of-life bleeding (Episode 96):
“Planning for the unthinkable isn’t about fear. It’s about empowering people and compassion around meeting their preferred place of care in death. And when we prepare, we give patients and families that choice.”
Build on the strengths of families and carers
A strengths-based approach asks not simply, “What support does this family need?”, but also, “What can they already do, and what would help them feel confident doing it?”
Across the podcasts, families and carers are not treated as passive observers. With the right information, medication, support and preparation, they can become active partners in care.
This is particularly powerful in the seizure episode (Episode 99). Angela Wilson, Community Palliative Care Macmillan Nurse, describes how families can be supported to manage seizures at home:
“We can empower patients, families, carers to manage them seizures at home and prevent unnecessary admission into acute care.”
That does not mean leaving people to cope alone. It means recognising their abilities and then surrounding them with the professional support, information and resources that allow those abilities to be used confidently.
The introductory episode (Episode 95) provides a striking example. A man's wife had been given a personalised plan, information and medication to help manage his seizures. When he deteriorated, she was able to follow the plan and seek additional help when she needed it.
The result?
“Within 30 minutes, he was calm, resting, no ambulance, no hospital, and he was just really peaceful at home.”
For Jess, the example demonstrates “the power of preparation”, particularly in a large rural county where professional help may take time to arrive.
Good care supports the whole person, not just their symptoms
Another theme running through the podcast conversations is that clinical treatment is only one part of good care.
Fear, uncertainty, guilt and anxiety matter too.
The end-of-life bleed podcast (Episode 96) describes the importance of simple actions: staying with someone, remaining calm, providing comfort, and reducing distress. The plan discussed in one real-life example helped a person remain at home, surrounded by the people who mattered to them, without a rushed hospital admission.
Preparing families also reduced fear. Dr Jess Weller explains:
“It’s about that emotional support as much as the clinical care.”
The diabetes episode (Episode 101) explores a different emotional challenge. People who have managed diabetes carefully for many years may find it difficult when the focus changes from tight blood sugar control towards comfort and quality of life. Families can wonder whether reducing testing means they are somehow failing their loved one.
Rowan Bontoft, Advanced Clinical Practitioner, explains that part of the professional role is reassuring families that this change is a considered clinical decision, “and definitely not neglect”.
Education, the discussion concludes, is therefore not simply about facts and figures. It also needs to provide emotional support.
This is holistic care: seeing the person and family behind the clinical task.
Focus on what people can still do
Strengths-based care is particularly visible in the spinal cord compression conversation (Episode 98).
Community Palliative Care Macmillan Nurse, Angela Wilson, describes a man who was clear that he did not want to be admitted to hospital. Following an honest conversation about the risks, an individual plan was developed around his wishes.
Treatment at home improved his symptoms: he regained movement in his legs, his pain reduced, and his bowel function improved. Community teams provided equipment and ongoing support.
But the story does not stop at symptom control.
The next aim was physiotherapy:
“Hopefully to start getting him out of bed and regain some independence.”
That small phrase captures something important about strengths-based practice. Even towards the end of life, care does not have to be defined only by deterioration, risk, and what someone can no longer do.
It can still ask:
- What is possible?
- What matters now?
- What ability or independence can we help someone maintain or regain?
Personalised care depends on good conversations
None of this works without honest conversations.
People need understandable information about their condition, the risks they face, and the choices available.
Professionals need to listen to what the person wants to know and how much they want to know. Families need opportunities to ask questions and understand what might happen.
And these conversations need to happen before everyone is trying to make decisions in the middle of the night during a crisis.
The spinal cord compression podcast (Episode 98)emphasises the importance of talking to the person and understanding both their clinical situation and their emotional and psychological needs.
Similarly, the introductory episode (Episode 95) describes person-centred crisis care as beginning with:
“Knowing the person’s wishes and goals.”
It also means giving families enough information to make informed choices and feel confident about what to do.
The conversation itself becomes part of the care.
Working together makes personalised care possible
Finally, personalised care cannot depend on one professional knowing the person well.
The complex plans of care were developed collaboratively across St Barnabas Hospice, community health services, hospital services, and the ambulance service.
That collaboration matters because emergencies do not conveniently happen when the professional who knows someone best is available.
A paramedic arriving at 2am may never have met the person. An out-of-hours clinician may know little about their history. Good documentation means they can still understand what has been discussed, what the person wants, and what professionals have agreed.
The diabetes episode (Episode 101) describes this as closing the loop between “the conversation, the documentation and what happens in a real emergency.”
The end-of-life bleed episode (Episode 96) also describes palliative care huddles where teams share information and updates, helping ensure that professionals responding to a crisis already understand the person's wishes and the plan that has been agreed.
Personalisation, then, is not something that happens only between one professional and one patient. It has to travel with the person across teams, services, and organisations.
Conclusion: clinical expertise alongside what matters
These podcasts deal with different clinical situations, but together they tell one very consistent story.
Excellent end-of-life care requires clinical knowledge and evidence-based guidance. But those things are most powerful when they are combined with something equally important: knowing the person.
It means asking what matters, recognising strengths, involving the people who are important to them, and planning ahead.
It means helping families move from fear towards confidence.
It means sharing information so that a person's wishes do not disappear when a different professional arrives.
And it means recognising that quality of life, dignity, relationships, independence, and being in a place that feels like home can matter just as much as a clinical intervention.
Perhaps Rowan Bontoft, Advanced Clinical Practitioner, captures the shared message of the whole series best in Episode 101:
“Clinical recommendations and the personal priorities have to sit side by side. This only works when it’s built around the individual, their symptoms, their wishes, and what matters to them.”
That is the heart of personalised and strengths-based care: not simply asking what is the matter with someone, but understanding what matters to them, and using all the strengths, relationships, and resources around them to make that possible.
