Module 2 of 2 · 45 minutes
The conversations, and doing it their way
By the end of this module you will be able to
- 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
Work through it
1 interactive for this module, built on the WAJD Teach engine. Nothing moves until you ask it to, and every one has a written version if you would rather read it.
Amara Nobody talks about dying until it is far too late.
Nadia 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 So everybody is protecting everybody.
Nadia 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 I am a care worker. It is not my place to give a prognosis.
Nadia 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 How?
Nadia 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 And if they say no?
Nadia 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.
Amara And if they say yes?
Nadia 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 DNACPR conversations are the ones I dread.
Nadia Because families hear do not resuscitate as do not treat, and as giving up.
Amara What actually helps?
Nadia 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 And what to say about everything else?
Nadia 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 Do families decide?
Nadia 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.
Amara People do ask families to decide though.
Nadia 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 What if the family disagree with each other?
Nadia 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 What is it?
Nadia 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 Last thing, and I know I get this wrong. Religious practice.
Nadia 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 How do I know which?
Nadia 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 Is there one question worth asking?
Nadia 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.
The written material
Starting a conversation nobody wants to start
Most conversations about dying do not happen because everybody is waiting for somebody else to raise it. The person often knows and is protecting the family; the family often knows and is protecting the person; and staff wait for a clinician who is waiting for a better moment.
You do not need to deliver a prognosis to open the door. 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?' offers the conversation without imposing it, and takes no from an answer.
Then listen, and do not fill silences. Note the exact words and pass them on, because the person who happens to be there when somebody decides to talk is very often a care worker at two in the morning rather than a doctor at a planned appointment.
Explaining DNACPR without doing harm
Families hear do not resuscitate as do not treat and as giving up, and a badly handled DNACPR conversation causes lasting anger and complaints.
What helps: explain what CPR actually is and what it does to a frail body, because most people's expectations come from television, where survival looks far more likely than it is. Be explicit about what continues: antibiotics, fluids, pain relief, hospital admission if appropriate, and every comfort measure.
Be honest about who decides. A DNACPR is a clinical decision, and while it must be discussed with the person or those close to them, it is not a consent form and families are not being asked to authorise a death. Telling a family they must decide places a weight on them that is not theirs and that they may carry for years.
And check it is still right. A DNACPR made during an acute admission that follows somebody home for three years without review is a recurring finding in complaints and reviews.
Family disagreement, and doing it their way
Where a family disagrees, go back to the person: what did they say, what did they write, what did they value. Disagreement is very often not about the clinical question but about guilt, an absent relative arriving late, or an old conflict surfacing under stress.
Where the person has capacity, their decision stands and the family's view does not override it. Where they do not, it is a best interests decision informed by consultation, not a family vote.
Religious and cultural practice at death 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; some have requirements about the direction the body faces, about jewellery or religious items that must not be removed, and about who may be present.
Ask in advance where you can, record it, and make sure it is visible to whoever is on shift at three in the morning. Do not assume from a name, an ethnicity or a stated religion: practice varies enormously within every faith, and the only reliable source is the person and their family.
- Ask in advance, record it, and make it visible on the shift that will need it
- Never assume practice from a name, an ethnicity or a recorded religion
- Ask who should be called, and in what order, and at what point
- Ask what must not be done, which is often the more important question
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