Living with the ReSPECT Form: a carer’s perspective
- Dec 19, 2025
- 7 min read
There is plenty of official information available about the ReSPECT form. It is usually explained in clinical language, as a way to guide doctors and paramedics when urgent decisions need to be made.
What is much harder to find is what the ReSPECT form is like to live with. How it feels to complete it. How it works in real situations. And how it can support carers and families during moments of real pressure and uncertainty.
This is my account of how the ReSPECT form was introduced for my husband, how it evolved as his health changed, and how it ultimately helped ensure that his wishes were respected. It also gave me clarity, confidence and a sense of control during some of the most difficult moments of our lives.
Introducing the ReSPECT form
My husband was diagnosed with dementia around three years before the ReSPECT form was introduced. By the time of his three month GP review, he had reached moderate dementia and was reluctant to communicate verbally with doctors or nurses, responding mainly to me.
At the end of that appointment, the GP suggested it was the right time to complete a ReSPECT form while my husband still had the capacity to agree to its contents. The GP knew that we had already discussed and completed Powers of Attorney, wills, and DNR and ADRT forms together, and that we were clear about each other’s wishes. This gave him confidence that my husband’s views would be accurately reflected, even though his responses were largely non verbal.
Working through the form
The early sections were straightforward. Names, dates, medical details, and references to existing care planning documents.
When we came to priorities for future care and place of death, the answers felt clear. My husband wished to remain at home wherever possible, with quality of life prioritised over treatments that might prolong life at the expense of comfort. We were clear that unnecessary hospitalisation was not what he wanted.
When discussing clinical recommendations, we chose to prioritise comfort, while remaining open to hospital admission or emergency treatment if there was a reasonable chance of returning to a good quality of life. We also confirmed that CPR was not appropriate. This was a decision we had discussed extensively long before.
The remaining sections confirmed my husband’s mental capacity, his involvement in the plan, the clinician’s signature, emergency contacts, and provision for future reviews.
At that point, my husband had never required emergency treatment or hospital admission.
The first test
About a year later, everything changed. My husband’s dementia had advanced, he had developed Parkinson’s disease, and his health became more fragile. After several days of low blood pressure and a GP review, he became unable to get upstairs or out of bed. The decision was made to admit him to hospital to investigate a possible infection or minor stroke.
My primary concern was ensuring that any hospital stay would be as short as possible, with a clear exit strategy. I was already in the process of arranging permanent care, and I was reassured that discharge would not be delayed once he was medically fit.
When the ambulance arrived, the paramedics immediately reviewed the ReSPECT form, followed its guidance, and my husband was admitted.
He spent ten days in hospital, was treated for an infection, and was discharged directly into full time dementia care at the home we had selected.
Learning the hard way
The next emergency came early one morning. I arrived at the care home to find paramedics preparing to take my husband to hospital, oxygen already being administered. Had I arrived later, he would have gone without my involvement.
This was a wake up call. I had assumed the care home could manage infections in house, but I learned that oxygen and intravenous treatments could not be administered there. Given the chance of recovery, hospitalisation was considered appropriate under the ReSPECT form.
Again, my husband spent ten days in hospital. This time, the impact was devastating. He lost the ability to eat independently, was confined to bed for most of the stay, and struggled to communicate. It took ten days back in the care home for him to regain basic abilities.
I realised then that the ReSPECT form needed updating. Not because it had failed, but because my understanding had deepened.
Regaining control
I met with the care home’s medical leads to understand exactly what care, including end of life care, could be delivered in house. My priority was clear. Future decisions should reflect my husband’s wishes and protect him from avoidable distress.
The ReSPECT form was updated to prioritise comfort, quality of life, pain relief, and remaining in the care home wherever possible. Crucially, it stated that any hospitalisation for acute deterioration or injury should only occur following consultation with next of kin.
I also sought reassurance that the care home could provide compassionate, pain free end of life care. Once I had that assurance, I felt confident in the revised plan.
The final test
Eight months later, my husband was clearly declining. One morning I received a call to say he was unwell and paramedics were on their way. This time, I arrived first.
When the paramedics assessed him, reviewed the ReSPECT form, and spoke with me and my son, we were all in agreement. Hospitalisation was not the right course. Antibiotics would be administered in the care home, accepting that this might not succeed.
The paramedic commented that the ReSPECT form was exceptionally clear and supported the decision to keep my husband where he was. Medication was prescribed immediately, without delay or debate.
I felt immense relief. At a critical moment, the form allowed decisions to be made calmly, collaboratively, and without conflict.
My husband died peacefully in familiar surroundings, with his family by his side.
Reflections
Over time, and through lived experience, the ReSPECT form gave me clarity, confidence and control. It allowed me to weigh medical advice against likely outcomes, considering not just survival, but quality of life, dignity and suffering.
In my case, it worked exactly as it should.
If you have not completed a ReSPECT form, I would strongly encourage you to put it on your to do list. It may not make things easier, but it can prevent unnecessary distress, confusion and heartbreak when it matters most.
Things I have learned and want to share
The ReSPECT form should be viewed as a living document and updated as health circumstances change.
If you are completing it on behalf of someone else, be as certain as you can of their wishes. If you have not had these conversations yet, be brave and have them while you can.
Decide whether decisions should be made individually or jointly with family or friends. As this form may be enacted in an emergency, it is essential that everyone involved agrees to avoid delay or conflict.
Review and update the form when entering residential care and clarify what end of life care is available in that setting.
Be aware that care settings can be risk averse, which may lead to early involvement of paramedics.
Discuss with clinicians whether treatment can be delivered in place.
Ask about likely hospital stays and plan exits early to avoid unnecessary delays.
Other members’ experiences
“I was at home when the phone rang. A nurse from my husband’s care home told me, calmly but seriously, that he had taken a turn for the worse and they needed to talk about what should happen next.
In that moment, I felt blindsided. My mind froze. All I knew was that I needed to get there as quickly as possible.
When I arrived, my husband was unresponsive and his breathing was laboured. Seeing him like that was devastating, and yet I was being asked to make decisions. I remember thinking, why are they asking me, I am not a doctor.
The responsibility felt overwhelming, mixed with fear, shock and grief.
Slowly, with support, my thoughts settled. I looked again at the ReSPECT form we had completed together when we were calm and able to talk honestly. Remembering that helped me realise I was not making decisions alone, and that I was honouring what my husband had already told me he wanted.
Looking back, I wish we had talked in even more detail about things like artificial feeding, antibiotics or catheters. These decisions feel impossible in the middle of a crisis.
My advice is to choose a quiet, peaceful time to talk through the ReSPECT form in the broadest and deepest sense. These conversations are hard, but they matter. While the form is not legally binding, it becomes a guiding record of the wishes you may one day need the strength to carry out.”
Find out more and get support
If this story has made you think about future care planning for yourself or someone you support, you may find the following helpful.
Learn more about the ReSPECT form
The ReSPECT form helps guide decisions about emergency care and treatment when someone is unwell and may not be able to explain their wishes.
Support in East Sussex
If you live in East Sussex and would like to talk things through, you can:
Speak with your GP or community nursing team about completing or reviewing a ReSPECT form
Ask care homes or supported living providers what care can be delivered in place and when hospital admission is likely
Contact The Good Company People for time, space and support to talk through next steps
A gentle reminder
The ReSPECT form is not a one off document. It should be reviewed as health and circumstances change, especially after hospital admissions or when moving into residential care.
If you would like help thinking about these conversations, or want to talk them through in a calm, supportive space, you can contact us at hello@thegoodcompanypeople.org or call 07472 564519.
