Recognising dying, planning ahead and the last days

Amara This is a hard one to do well. Where do we start?

Nadia 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 And that person dies in a corridor.

Nadia 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 So what am I looking for?

Nadia 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.

Amara And closer in?

Nadia 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 Is there anything that catches people out?

Nadia 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 Is there a simple tool for recognition?

Nadia 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.

Amara Let us do planning. What carries legal weight and what does not?

Nadia 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 And the rest?

Nadia 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 The last days. What is the framework now?

Nadia 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.

Amara What went wrong with that?

Nadia 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 Symptoms. What do I need to know?

Nadia 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 The noisy breathing. Families find that unbearable.

Nadia 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.

Amara Agitation?

Nadia 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 Anything that surprises people?

Nadia 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 Two things people always ask. Does morphine hasten death?

Nadia 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.

Amara And food and drink?

Nadia 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 After death.

Nadia 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 So ask.

Nadia 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 Last thing, and I want to ask about you rather than the patient. What about the staff?

Nadia 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 And the effect?

Nadia 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.