What do you want?
to my mind this is just the fundamental, the basic. Start
from that premise and you can build up to good end of life care”.
QUESTION
What should we be asking people approaching end of life ?
Write down your feelings on the following:
What things might be most important towards the end of life?
For the person approaching end of life?
For relatives and carers?
For you the health or social care professional?
Why might people and carers find it difficult to tell us
what matters to them?
Key worries that people and carers might have at the end of
life
Communication Breakdown
“Last week I was at my mum-in law’s bedside from 4:30am on
the Saturday morning until 8:30pm on the Tuesday evening and whilst the staff
did an excellent job of looking after my mother-in-law I have to say that
communications between the staff was not good. I spent all of those 4 days
behind curtains, closed curtains.... I’m sure they were oblivious to our
needs”.
What prevents people from sharing worries and needs?
Fears
Being stigmatised
Being judged ungrateful or inadequate
Breaking down and crying
Burdening health and social care staff
Causing distress to others
Not being able to find the words
Beliefs
Problems are an inevitable part of illness so health and
social care staff should anticipate them Problems cannot be alleviated
Professional people are only interested in certain types of
problems
This is not the ‘right’ professional person to talk with
Professional staff are too busy
Communication challenges
It’s hard to find the right words
The right questions weren’t asked by the professional
Problems hinted at but not picked up by the professionals
Not communicating in first language
Cognitive impairment
The right questions weren’t asked by the professional
Problems hinted at but not picked up by the professionals
Not communicating in first language
Cognitive impairment
Why do professional staff struggle to talk about dying?
Cold Calls
Fictitious person
“I was given a phone call ... over the phone by the
respiratory nurse to tell me “by the way, thought you’d better know, cause
you’re going to get a copy of the letter...you’re actually end stage now”.
Question: What would you want from the professional people
around you if you needed a trustworthy person, or a person with whom you could
talk or just ‘be’?
EMPATHY
Empathy is:
The ability to recognise the felt experience of another
person.
To put oneself in their position and to see the world from
their perspective.
Empathy is not
Feeling the same, or how you would feel in that situation.
Some people would say that in order to feel compassion you first have to be able to empathise – to see the situation from the other person’s point of view.
What do you think?
Some questions to reflect on
Imagine you just received some really bad news and were
devastated. How many of the above statements and questions
Would you want to hear?
How do they make you
feel?
Why do you think we
say these things? (There are no right or wrong answers)
Some ways in which we stop people from telling us about their concerns and needs
Am I a person or a disease?
“ sometimes we put the diagnosis or the treatment or the
prognosis in front of the fact that we are actually dealing with a person. A
person who has relationships with other people and...
sometimes the objectives of the medical staff might not be
the same as the objectives of the person”
Fictitious Person
"In about 3 of 4 weeks time, I’ve got to go under the
surgeon’s knife with a man who I’ve been battling with for ages to treat me as
a person and not as a piece of...in this case as a rectum
“We often meet up with professionals who do not realise that
we have had lives, experiences and we are not treated as people with a past”
What do we mean by the term “person-centred”
Please write down your answers
REFLECTIVE EXERCISE
Do you think lack of time is a reason for not seeing the
whole person or an excuse?
How much do the barriers and challenges discussed in
Section 2, Communication Breakdown, get in the way of seeing the whole person?
Are there ways in which we could acknowledge and recognise
the whole person?
What are they?
“Crabbit Old Woman”
What do you see, what do you see? Are you thinking, when you
look at me-A crabbit old woman, not very wise, Uncertain of habit, with
far-away eyes, Who dribbles her food and makes no reply When you say in a loud
voice,I do wish you’d try. Who seems not to notice the things that you do. And
forever is losing a stocking or shoe. Who, unresisting or not; lets you do as
you will With bathing and feeding the long day is fill. Is that what you’re
thinking ,Is that what you see? Then open your eyes, nurse, you’re looking at me.
A nurse’s response to “Crabbit Old Woman”
What do we see, you ask, what do we see? Yes, we are thinking when looking at thee!
We may seem to be hard when we hurry and fuss, But there’s
many of you, and too few of us. We would like far more time to sit by you and
talk, To bath you and feed you and help you to walk. To hear of your lives and
the things you have done; Your childhood, your husband, your daughter, your
son. But time is against us, there’s too much to do –Patients too many, and
nurses too few. We grieve when we see you so sad and alone, With nobody near
you, no friends of your own. We feel all your pain, and know of your fear That
nobody cares now your end is so near, But nurses are people with feelings as
well, And when we’re together you’ll often hear tell
Don’t shoot the messenger
“have you ever wondered how people whose profession it is to
give bad news, to talk about people, maybe give them the news their life is
very short ... how (do) they cope?”.
Question: How do you cope with facing other people’s
distress?
“Special people” and you, as professional people, most of us
can identify particular people who for one reason or another we became more
attached to than usual or who have affected us deeply. Think of a particular
person with whom you have worked. Perhaps there was something very special
about him or her. Perhaps something about the circumstances that reminded you
of your own. Perhaps the illness or death was especially tragic or traumatic.
What was it about this person that affected you?
How did you cope? (What helped? What hindered?)
What else did you need? (From colleagues, from managers)
What have you learned from this that will support you in the future?
What else did you need? (From colleagues, from managers)
What have you learned from this that will support you in the future?
Listening is communicating
Below are some skills that help people to share their
concerns and feel heard and understood. Communicating well makes us more
effective and can reduce our own feelings of stress and helplessness
How much truth can a spirit bear?
Jimmy, a fictitious nurse said, “right from the very
beginning I went out and researched everything I could to find out about
prostate cancer...Now some of us are like that...others are not. Others, and I
can assure you from the work I’ve done in support groups and counselling work,
some want to do that... (faces away)...They do not want to see the ‘nasties’ ”
What do you think are the consequences of giving people too
much, too little or inappropriate information?
But I don’t give bad news do I?
I’m really sorry but....We haven’t been able to get the care
package together in time to get you home today.
He’s going to have to go into hospital
We’re worried about the symptoms
Your wife’s not so well today
He’s going to have to go into hospital
We’re worried about the symptoms
Your wife’s not so well today
BAD NEWS
Bad news is any information which may impact on the person
or carer’s view of the future. So how much truth can you dare?
“Could we honestly believe that if somebody had been honest
with us at an earlier stage and said
“go for the quality of life now. Enjoy and accept the fact
that it’s going to be short” it would have been so beneficial. As it is, we’re
left with these feelings, “if only we had....””
Giving significant information
Information and advice is more likely to be both heard and
absorbed if it is delivered in manageable chunks tailored to the needs of the
individual AND allows the resultant concerns and feelings to be acknowledged
Check awareness of the situation and explore the
reasons.“Before we start talking about plans for the future can I just check
how you are seeing the situation at the moment?”
If they are aware that the person is dying.
Give a warning
shot and confirm their understanding “Unfortunately, I think you are right,
your mum is dying”
If the person is not aware. Give a warning shot.
”I’m afraid she doesn’t seem so well today”.
Pause to let that sink in.
Continue to explain in small steps using the responses to
guide both your speed and the size of the steps:
“What do you mean not so well?”
Professional
“Well we’re quite concerned about her”
Relative
“Oh dear...why?”
Professional
“OK. We were hoping the antibiotics might help to relieve
her chest infection”
Relative
“Yes”
Professional
“But unfortunately they haven’t worked”
Relative
“That sounds bad...so what can you do?”
Professional
“I’m afraid we can’t relieve her chest infection"
Relative
“So what does that mean...does it mean...oh dear”
Professional
“What exactly are you asking me?”
Relative
“Does this mean the end?”
Professional
“I’m afraid it does yes”
PAUSE
Professional
“I’m very sorry to have had to tell you that Mr Jones”
If a person indicates that he or she does not want to know
more. Tentatively acknowledge and explore the reasons why. Double check the
level of information they do want. If they still don’t wish to know more –
suggest meeting again later.
Once Bad News has been broken:
Empathise and acknowledge feelings(shock, distress, etc) and
ask if willing to share their feelings.
“I can see what I have said has left you very upset. Can I
ask you how you are feeling about all this?”
“I know this seems a stupid question right now, but how are
you feeling?”
Help person/carer identify resulting concerns, worries,
fears and information needs.
Discuss each concern in turn with a view to actions to be taken
Help person prioritise these concerns.
“What is most important to you right now?”
Give required information and treatment details tailored
to the person’s concerns.
Finally:
Check out how the person is left feeling before closing the
conversation.
