Carer Talk: Heather Stuart, Teesside Hospice

Understanding End of Life Care

At our recent carers’ talk, we welcomed Heather from Teesside Hospice, who joined us for an open, informal question-and-answer session about end of life care. The conversation came about after a carer in our group had a difficult experience around end of life care, and Alison invited Heather to help us all feel a little more informed and a little less alone with these questions.

Teesside Hospice supports people across the Tees Valley, and Heather was keen to dispel a common myth early on: a hospice isn’t only somewhere people go to die. It’s a place for living well with a life-limiting illness too, and its support extends to carers as well as the person who is unwell.

What followed was an honest, wide-ranging conversation. Here are the key themes that came out of it.

Starting the conversation early

One of Heather’s clearest messages was the value of Advance Care Planning — having conversations about a person’s wishes before a crisis forces the issue. This isn’t a single conversation, but an ongoing one, ideally involving the person, their family, and their GP or district nurse.

It covers the practical as well as the personal: who has power of attorney, where important documents are kept, who can access important financial information and bank accounts, and a person’s preferred place of death. It also includes wishes for afterwards — burial or cremation, and what kind of send-off, if any, someone would like.

None of this is a comfortable topic. As Heather put it, everybody knows everybody dies, but talking about it can still feel awkward. Having these conversations early, while there’s no immediate pressure, means families are acting from a place of knowledge rather than guesswork when the time comes — and it means carers can focus on being present with the person they support, rather than scrambling to work out practicalities.

Recognising the signs

Carers often asked how you know when someone is approaching the end of life. Heather was honest that it’s genuinely difficult to pinpoint, but healthcare professionals become attuned to certain signs: reduced eating and drinking, spending increasing amounts of time asleep, and sometimes increasing confusion. These changes can also make a person less safe, which is why professional involvement at this stage matters — both for the person’s comfort and for the carer’s own reassurance.

Heather also reminded us that every person’s final journey is different. While healthcare professionals often recognise common patterns, no one can predict exactly when someone will die. Some people experience changes over days, while others may remain relatively stable for weeks. Families shouldn’t feel they have to recognise every sign themselves. If something changes or you’re worried, it’s always appropriate to seek advice from the professionals involved in the person’s care.

DNACPR decisions and everyday care

A theme that came up strongly was the difference between a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision and everyday care. One carer described worrying that a DNACPR in place for the person they support seemed to be affecting the level of stimulation, conversation and engagement they were getting day to day in a care setting.

Heather was clear that a DNACPR relates only to what happens in the event of a cardiac arrest — it shouldn’t mean withdrawing everyday care, conversation, or activity. If a carer feels basic needs around nutrition, personal care or engagement aren’t being met, that’s worth raising directly and, in more serious or ongoing cases, can be a safeguarding matter. Her advice was practical: ask for an Advance Care Planning conversation directly with the care setting, take someone along for support if that feels easier, and don’t be afraid to say plainly what isn’t working.

Where someone is cared for

Preferred place of death came up often — and Heather was keen to stress there’s more flexibility here than people often assume. Being “with” someone at the end doesn’t have to mean being at home. Hospice care can include staying overnight with the person you support, and palliative care teams can visit regularly wherever someone is, with visits increasing as needed.

For carers considering caring for someone at home, practical barriers came up a lot: equipment, home adaptations like ramps, and physically supporting someone with mobility needs. Occupational therapy input, funding through NHS Continuing Healthcare, including Fast Track funding where someone has a rapidly deteriorating condition, and a social worker’s involvement in coordinating a care plan were all mentioned as ways to work through these practicalities — and Heather was firm that it’s entirely reasonable for a carer to say they can’t safely provide certain care alone.

How hospice care is funded

Several carers were surprised to learn that hospice care is free for patients and families. Only around 30% of Teesside Hospice’s funding comes from the NHS — the rest is raised through fundraising and charity shops. It costs millions of pounds each year to provide these services, which puts into perspective just how much community support underpins the care available locally.

Grief that starts before death

For carers supporting someone with dementia in particular, Heather spoke about anticipatory grief — the grieving process that can begin long before someone dies, as the person changes and the relationship shifts. She was clear there’s no “right” way to feel or grieve, and no timeline that applies to everyone. Teesside Hospice’s wellbeing service offers counselling that specifically supports carers with this earlier stage of grief, not just bereavement afterwards.

Staying connected

The conversation ended on a lighter, practical note: Teesside Hospice runs a dementia group on Tuesday mornings (10am–12pm), with arts and crafts, music, films, visiting choirs, and even a minibus for outings — while carers can access complementary therapies at the same time. A referral through a healthcare professional is usually the way in, with referral criteria available on the hospice website.

There was also a shared reflection on how valuable it is simply to have a space to talk to others who understand — and a hope that more carers locally would know these groups and services exist.

Where to find more support

• Teesside Hospice — information on the Wellbeing Centre, inpatient care, bereavement counselling, and how to refer or self-refer to the drop-in service: teessidehospice.org or call 01642 811060.
• Dementia Group (Tuesdays, 10am–12pm) — held at Teesside Hospice; ask your GP or healthcare professional about a referral, or check the referral criteria on the hospice website.
• Stockton-on-Tees Carers’ Hub — for a carer’s assessment, emotional support, and practical advice: stockton.gov.uk/carershub.
• Carers Together — a support network connecting carers across local communities, offering practical and emotional support.
• Your GP, district nurse or social worker — can help start Advance Care Planning conversations and advise on referrals for NHS Continuing Healthcare assessments where appropriate.

With thanks to Heather and Teesside Hospice for giving their time so generously, and to the carers in our group who asked the honest questions many of us are too afraid to ask. Details in this summary have been anonymised with consent.