# End of life care

*Recognising dying, managing symptoms, and having the conversation nobody wants to start.*

## Production summary

- Modules to record: 2
- Total script: 1556 words, about 10 minutes of finished audio
- Voices: Amara (host) and Nadia (practice educator)
- Level: Level 2 to 3, all staff supporting people at the end of life

## Accreditation wording that must appear in the description

- **The CPD Certification Service** (planned): Application scheduled.
- **NICE guideline NG31 and the Five Priorities for Care** (aligned): Written against NICE guidance on care of dying adults and the Leadership Alliance five priorities. Alignment is our own mapping.

> Do not upgrade any of these words in a description or a thumbnail. Aligned is not accredited, and planned is not approved.


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## Recognising dying, planning ahead and the last days

**Runtime** about 6 minutes. **Words** 924. **Starts at** 00:00 in the full course recording.

### Learning outcomes to state on camera

- Recognise deterioration across months, weeks, days and hours
- Explain the tools of advance care planning and their legal weight
- Apply the five priorities for care of the dying person
- Support symptom control, care after death and the bereaved

### Script


`[CUE 1]` *Four timescale panels: months, weeks, days, hours, with signs listed in each.*

**AMARA**  [00:00]
This is a hard one to do well. Where do we start?

**NADIA**  [00:04]
With recognition, because everything else depends on it. If nobody recognises that a person is dying, there is no planning, no anticipatory prescribing, and no conversation. And then at four in the morning somebody panics and calls an ambulance.

**AMARA**  [00:20]
And that person dies in a corridor.

**NADIA**  [00:23]
Often, yes. When they had said for two years that they wanted to die in their own bed. That gap is mostly not clinical. It is a recognition failure.

**AMARA**  [00:34]
So what am I looking for?

**NADIA**  [00:37]
Different signs at different timescales. Over months: repeated admissions, weight loss, increasing dependency, treatments not working as well. Over weeks: profound fatigue, most of the day in bed or a chair, less interest in food, withdrawing.


`[CUE 2]` *Surprise question card held on screen.*

**AMARA**  [00:51]
And closer in?

**NADIA**  [00:52]
Over days: bed bound, minimal intake, difficulty swallowing, drowsy or semiconscious. In the last hours: breathing changes, sometimes a Cheyne Stokes pattern, noisy secretions, mottled cool hands and feet, very little urine.

**AMARA**  [01:05]
Is there anything that catches people out?

**NADIA**  [01:08]
Yes, and families need warning about it. A period of unexpected alertness, sometimes hours before death. Somebody who has not spoken for two days sits up and talks. Families read it as recovery. Prepare them for it gently, because the hope and then the loss within a few hours is brutal.

**AMARA**  [01:28]
Is there a simple tool for recognition?

**NADIA**  [01:31]
The surprise question, and it is one line. Would you be surprised if this person died in the next twelve months? If the answer is no, planning should already have started.


`[CUE 3]` *Legal weight ladder: ADRT binding, health and welfare LPA binding, advance statement and ReSPECT influential.*

**AMARA**  [01:44]
Let us do planning. What carries legal weight and what does not?

**NADIA**  [01:48]
This distinction matters enormously and it is muddled constantly. An advance decision to refuse treatment is legally binding if valid and applicable. A health and welfare lasting power of attorney gives the attorney authority once capacity is lost.

**AMARA**  [02:04]
And the rest?

**NADIA**  [02:05]
An advance statement of wishes and a ReSPECT form record preferences and recommendations. They must be taken into account, and they are influential, but they do not bind. And a DNACPR relates only to attempted resuscitation. It is never an instruction to withhold treatment, comfort or admission.

**AMARA**  [02:24]
The last days. What is the framework now?

**NADIA**  [02:27]
The five priorities for care of the dying person. Recognise. Communicate. Involve. Support. Plan and do. They came in after the Liverpool Care Pathway was withdrawn.


`[CUE 4]` *Five priorities wheel: recognise, communicate, involve, support, plan and do.*

**AMARA**  [02:37]
What went wrong with that?

**NADIA**  [02:39]
It was applied as a protocol rather than as individual care. People were put on a pathway. That phrase should never have existed. Dying is not a pathway you are placed on, it is something happening to a specific person who still has preferences.

**AMARA**  [02:57]
Symptoms. What do I need to know?

**NADIA**  [03:00]
Pain first, and remember that a person who cannot speak can still be in pain. Breathlessness: sit them up, a fan or an open window helps more than people expect, calm presence, and opioids or anxiolytics where prescribed.

**AMARA**  [03:15]
The noisy breathing. Families find that unbearable.

**NADIA**  [03:18]
The so called death rattle. Reposition, and then tell the family the truth, which is that it almost always distresses them far more than it distresses the person. That one sentence relieves an enormous amount of suffering.


`[CUE 5]` *Symptom response grid with the exclude bladder, bowel, pain rule highlighted.*

**AMARA**  [03:32]
Agitation?

**NADIA**  [03:33]
Before you treat agitation as agitation, exclude a full bladder, constipation and pain. Every time. Urinary retention at the end of life is common and it is agonising, and it is regularly treated with a sedative instead of a catheter.

**AMARA**  [03:49]
Anything that surprises people?

**NADIA**  [03:50]
Mouth care. It sounds like a small comfort measure and it is one of the highest value interventions in the last days. A dry mouth is genuinely wretched and it is easy to fix, and it is the thing that gets dropped when a shift is busy.

**AMARA**  [04:09]
Two things people always ask. Does morphine hasten death?

**NADIA**  [04:13]
Appropriately titrated opioids for pain and breathlessness in a dying person do not hasten death. That misconception causes real suffering, because families and sometimes staff hesitate, and the person lies there in pain while everyone worries about a thing that is not happening.


`[CUE 6]` *Closing frame on staff support: funeral, debrief, marking the death.*

**AMARA**  [04:30]
And food and drink?

**NADIA**  [04:32]
Offer. Support them to take what they want. Do not force. Reduced intake is a normal part of dying rather than a cause of it. And mouth care matters far more at that point than volume.

**AMARA**  [04:46]
After death.

**NADIA**  [04:47]
Unhurried where you can. Culturally and religiously appropriate, and that varies enormously. Some faiths require burial within twenty four hours. Some require specific people to wash the body. Some require that the body is not left alone. Some prohibit certain handling.

**AMARA**  [05:03]
So ask.

**NADIA**  [05:04]
Ask in advance where you possibly can, and write it down, because nobody wants to be asked that question for the first time an hour after their mother has died. And handle possessions visibly carefully. How a family is handed a bag of belongings is remembered for decades.

**AMARA**  [05:23]
Last thing, and I want to ask about you rather than the patient. What about the staff?

**NADIA**  [05:30]
Then I will be direct, because the sector is not. Cumulative grief in care work is real. You attach to people, and then they die, and then a new person is in that room within a week, and nobody says anything.

**AMARA**  [05:46]
And the effect?

**NADIA**  [05:48]
It is one of the significant reasons experienced staff leave. So going to a funeral is legitimate. A team debrief is legitimate. Marking a death on the unit in some small way is legitimate. And if your employer provides support, use it. Grief that is not acknowledged does not go anywhere. It just waits.

### Sources for the on screen credit

- Care of dying adults in the last days of life, NG31, NICE
- One chance to get it right: five priorities for care, Leadership Alliance for the Care of Dying People
- End of life care for adults, QS13, NICE
- Care after death guidance, Hospice UK

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## The conversations, and doing it their way

**Runtime** about 4 minutes. **Words** 632. **Starts at** 06:09 in the full course recording.

### Learning outcomes to state on camera

- Open a conversation about dying without forcing it
- Explain a DNACPR decision to a distressed family
- Handle disagreement within a family
- Provide culturally and religiously appropriate care at and after death

### Script


`[CUE 1]` *Three way protective silence: person, family and staff each waiting.*

**AMARA**  [06:09]
Nobody talks about dying until it is far too late.

**NADIA**  [06:13]
And the reason is almost comic if it were not so sad. The person knows and is protecting the family. The family knows and is protecting the person. And the staff are waiting for a doctor who is waiting for a better moment.

**AMARA**  [06:30]
So everybody is protecting everybody.

**NADIA**  [06:32]
Into silence. And the cost is that nothing gets planned, so the ambulance gets called at four in the morning and somebody dies in a corridor having said for two years that they wanted to die at home.

**AMARA**  [06:48]
I am a care worker. It is not my place to give a prognosis.


`[CUE 2]` *The opening question offered, with no as an accepted answer.*

**NADIA**  [06:53]
It is not, and you do not need to. You only need to open the door and let somebody walk through it if they want to.

**AMARA**  [07:04]
How?

**NADIA**  [07:04]
Ask permission and ask openly. Some people like to think ahead about what they would want if they became more unwell. Is that something you have thought about?

**AMARA**  [07:15]
And if they say no?

**NADIA**  [07:17]
Then no is a complete answer and you leave it. You have offered, which is more than most people get, and they now know you are somebody it can be raised with.


`[CUE 3]` *Television CPR survival against real survival in frail patients.*

**AMARA**  [07:30]
And if they say yes?

**NADIA**  [07:32]
Listen. Do not fill the silences. Write down their exact words and pass them on, because the person who happens to be there when somebody finally decides to talk about this is almost always a care worker at two in the morning, not a doctor at an appointment.

**AMARA**  [07:51]
DNACPR conversations are the ones I dread.

**NADIA**  [07:54]
Because families hear do not resuscitate as do not treat, and as giving up.

**AMARA**  [08:00]
What actually helps?


`[CUE 4]` *DNACPR with the list of what continues spelled out beside it.*

**NADIA**  [08:01]
Explain what CPR is and what it does to a frail body. Most people's expectations come from television, where survival looks enormously more likely than it is, and nobody has ever told them otherwise.

**AMARA**  [08:14]
And what to say about everything else?

**NADIA**  [08:17]
Be explicit and specific about what continues. Antibiotics. Fluids. Pain relief. Hospital if appropriate. Every comfort measure. Say the list out loud, because in their head do not resuscitate has already become do nothing.

**AMARA**  [08:31]
Do families decide?

**NADIA**  [08:32]
No, and this is where real harm gets done. A DNACPR is a clinical decision. It must be discussed, but it is not a consent form.


`[CUE 5]` *Family disagreement traced back to guilt and a late arrival rather than the clinical question.*

**AMARA**  [08:42]
People do ask families to decide though.

**NADIA**  [08:45]
They do, meaning to be inclusive, and they hand somebody a weight that is not theirs. A daughter who believes she authorised her mother's death can carry that for years. Discuss it. Do not delegate it.

**AMARA**  [09:00]
What if the family disagree with each other?

**NADIA**  [09:03]
Go back to the person. What did they say, what did they write, what did they value. And understand that the disagreement is very often not clinical at all.

**AMARA**  [09:14]
What is it?


`[CUE 6]` *Cultural requirements recorded and visible to the night shift.*

**NADIA**  [09:16]
Guilt. A son who has just arrived from abroad and wants everything done because he was not there. An old family conflict surfacing under the worst possible pressure. Recognising that changes how you handle it entirely.

**AMARA**  [09:30]
Last thing, and I know I get this wrong. Religious practice.

**NADIA**  [09:34]
It varies enormously, and getting it wrong is remembered for a generation. Some faiths require burial within twenty four hours. Some require specific people to wash the body and prohibit others from touching it. Some require the body not to be left alone.

**AMARA**  [09:52]
How do I know which?

**NADIA**  [09:54]
Ask, in advance, and write it down where the night staff will find it. And do not assume from a name or a recorded religion, because practice varies enormously within every faith.

**AMARA**  [10:06]
Is there one question worth asking?

**NADIA**  [10:09]
What must not be done. People will tell you what they want if you ask, but the prohibitions are the things that cause lasting distress, and almost nobody thinks to ask for them.

### Sources for the on screen credit

- Care of dying adults in the last days of life, NG31, NICE
- Decisions relating to cardiopulmonary resuscitation, joint guidance, BMA, Resuscitation Council UK and RCN
- Care after death: religious and cultural practices, Hospice UK

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