Thirty of the 42 patients whose notes were reviewed in the course of the research
were placed on the LCP. All but one of the patients had in place a Do Not Attempt
Cardiopulmonary Resuscitation order at the time of death, intended to prevent unnecessary
and futile intervention in the event of a cardiac arrest 36]. All such orders were signed by the clinician responsible for the patient’s care,
and in 14 cases it was noted that the issue had been discussed with the patient’s
family. Although staff members who were interviewed were aware of advance care planning
and, in some cases, saw it as something desirable for frail, older patients with multiple
co-morbidities, none of them had worked with patients who had any kind of advance
plan in place.
Communication between staff and carers was predominantly verbal, and mainly took the
form of face to face encounters. Patients on the study wards who were approaching
the end of their lives were generally beyond the point at which they could communicate
with staff about their care, so the research focus moved to family carers to seek
their perspectives. Three of the 33 patients whose care was observed on the wards
did not have relatives who could be invited to take part in an interview. Carer and
staff respondents talked about communicating with each other during the course of
interviews. Carers reported variable experiences with regard to their communications
with staff. There were instances of very good communication, when carers felt informed
and consulted throughout their relative’s hospital stay. There were also, however,
instances of poor communication when carers struggled to gain access to the information
that they needed. The variability between carers’ experiences, often on the same wards,
was striking.
The findings are presented here from staff perspectives first, followed by the perspectives
of carers, then a case study is offered which highlights a number of the key points.
The setting
The wards which comprised the research setting were busy, semi-public places which,
particularly during the mornings, were noisy with the comings and goings of a wide
range of individuals from doctors through to ancillary workers. Noise levels were
exacerbated by ringing phones, patient call buzzers, voices in conversation or calling
out and the sounds of equipment being moved around. Each ward had its own routines
with certain times at which specific tasks were carried out such as catering staff
bringing round the tea trolley, or nurses washing and dressing patients. Official
visiting hours were from 2pm to 8pm but when a patient was assessed as dying their
family members were allowed open visiting, so they could be on the ward whenever they
wished.
The hospital has a dedicated palliative care team, including a consultant and a team
of Macmillan nurses. The nurses routinely visited Ash, the acute admissions unit,
to enquire whether there were any referrals for them and offer advice to staff. The
other wards participating in the study had the option of referring their patients
to the palliative care team, or of seeking advice from the team, but in practice this
rarely occurred.
Staff perspectives
Giving bad news
Acute hospital wards are oriented towards the active treatment and discharge of patients,
and although death happens on a regular basis, this is not the core work of the ward.
Staff, however, were confident that they could provide good end of life care, and
regarded this as part of their normal work load. Informing carers that their relative
is dying and has been placed on the LCP was considered the responsibility of the senior
clinician, as it demands a high level of professional knowledge expertise and authority:
Although there’s always people on the ward, I don’t think they’ve always got the expertise
to start talking in great detail about recognising that someone’s nearing the end
of their life (Consultant, Fir).
The fact that a discussion has taken place with a patient’s family about the need
to place them on the LCP was recorded in the patient’s notes, but detail was not usually
provided of the content of the discussion. Each of the wards had daily multi-disciplinary
team meetings at which patients and plans for their care were discussed. However,
not all members of staff could be present at these meetings, and nurses described
how they needed to read the medical notes of the patients for whom they were responsible
on any given shift, so that they could be sure of what care and treatment was to be
provided.
Consultants and other senior doctors spent limited time on the wards so they were
unlikely to be available for a follow-up conversation, should the carers wish for
one. One senior clinician described his practice in the following way:
My usual way of saying is, ‘Where do you think we are, and what’s been happening,
what’s your understanding been?’…you have to go very gently and then you have to think
about having a further discussion the next day. (Consultant, Oak)
This approach to communication with carers was unusual, both in terms of what staff
participants described as normal practice and what was observed by researchers on
the wards.
Once a patient had been acknowledged as dying and been placed on the LCP the major
responsibility for their care passed to the nursing staff. Nurses were not so ready
or able to discuss aspects of care with family carers:
I am just sort of trying to deal with any worries that the family have which usually
from a nursing point of view is they will call you in if the breathing changes or
they will call you in just if the patient moves sometimes even because they are, might
say if the patient is in pain or whatever. But as for talking at length about conditions
and prognosis, no we don’t usually do that. I think we probably will sidestep which
is as well. So, no we’ll say, ‘You’ll have to just ask the doctor to have a word with
them’, partly to do with not wanting to say the wrong thing, and partly because we
do not know what to say. (Staff Nurse, Ash)
Role of the nurse
Nurses described a different role for themselves to that of medical staff, one in
which the doctor tells the family the news and then, ‘it’s the nurse’s job to support
the family’ (Deputy Ward Manager, Fir). One nurse described a need to put what the
doctor has said into language that the family can comprehend, demonstrating an awareness
of the difficulties in understanding that carers sometimes experienced:
There’s a lot of people that will just sit and nod at a doctor and when they’ve gone,
will ask the nurse. .. We had a relative last week that literally said, the doctor’s
just been and told them what’s going off, I didn’t understand a word he said, can
you tell me … what’s happening? (Staff Nurse, Elm)
Despite positive accounts of nursing roles and relationships with carers during interviews,
observational data suggest that carers were sometimes viewed in a negative way:
Ward Manager concedes that she finds relatives a useful source of information about
the patient, but does not make any reference to relatives’ need or entitlement to
information from staff. In fact, represents relatives as being frequently demanding
and unreasonable in their manner and expectations – constantly asking for information
and updates – when the patient has not changed from the previous night, or earlier
in the day. Dislikes visiting times – finds relatives’ attitudes have changed: they
have become more demanding, inconsiderate and rude: they are uncooperative when told
not to bring flowers, to sit on beds, to limit numbers by the bedside, not to bring
young children to visit (Research observation notes, Fir).
One area in which nurses’ intervention was critical concerned the initiative they
took in summoning the family when they recognised that a patient was about to die:
When the curtains open PE605 is lying down with his bed flat. His head is to one side,
and he is still and quiet. Deputy Ward Manager 1 comes out of the room and straight
across to me. She tells me that she has phoned PE605’s wife and daughter to come in,
yesterday he could talk and was with it, so there has been a rapid deterioration in
his condition (Research observation notes, Elm).
This was an area in which nurses played a key role, and were frequently instrumental
in allowing family members to be with their relatives as they were dying.
Perceived limitations to carers’ understanding
Carers were sometimes thought unable to understand and take in more than a fraction
of the information that they were given:
We know you come to a medical consultation and you remember twenty percent of it,
you may remember the doctor’s face, you may remember a sentence of what the doctor
said…you may remember nothing at all. You go and dutifully write it all down in the
notes and the relatives have a completely different recollection of what was said.
(Consultant, Ash)
There was also a belief expressed by some staff that when families did not anticipate
that their relative was approaching the end of life, one conversation with the doctor
was insufficient to allow them to understand that their relative was dying and what
the implications of this might be. One staff nurse expressed this by saying:
I think there’s probably levels of acceptance, and maybe as nurses and practitioners
and doctors, we think, because we’ve had one conversation where we’ve said very clearly,
He’s coming to the end of his life, and it could just be a matter of days now…and
they nod and they say Yes, okay, that doesn’t mean to say that that’s been fully accepted
or processed by them…you might need to have the conversation again, but obviously,
nurses and doctors don’t want to have that conversation every day, and you think if
it’s happened once, why would you go there with someone? (Staff Nurse, Oak)
Such a perspective puts the onus of understanding on the carers, implying that health
professionals have carried out their duty by having the one conversation with the
family and that if the family wish for more it is their own responsibility to seek
that out. However, members of staff understood cues that a patient was thought to
be dying which to carers were obscure and incomprehensible. Cues such as the cessation
of routine observations or the permission given to carers to visit at any time, were
obvious to health professionals as markers that a patient was dying. Some respondents
also felt it should be obvious to families that their relative was dying:
It’s pretty obvious that somebody’s dying because, you know, the sombre lighting and
the sombre staff and other people coming in and focusing on symptoms rather than,
you know, strutting around with charts and drug cards and you know. (Consultant, Ash)
It seemed difficult for staff to remember that the terrain of the ward and its habits
and processes which were so familiar to them were alien to family carers, who were
often unable to understand what was happening to their relative. It was rare for a
member of staff to explain to carers in any detail what they might expect as their
relative was dying, perhaps through a failure to appreciate that carers had little
or no experience with dying. Lack of contact between family carers and members of
staff prohibited the establishment of mutual understanding. It was not unusual to
see, while carrying out research observations, that staff did not greet relatives
when they arrived on the ward and often moved about the ward with downcast eyes to
avoid eye contact. Indeed, the missing or avoidance of opportunities by staff to communicate
proactively was a striking feature of observations. Staff seemed to exhibit a reluctance
to engage with the relatives of patients, while family members appeared uncomfortable
and ill at ease when visiting their relative; such discomfort could contribute to
an unwillingness to approach staff for information.
Carers’ perspectives
Carers who were interviewed had varied experiences. When the dying patient was placed
in a side room it was easier for their family to spend time with them without being
disturbed by the routine work of the ward. However, when patients remained in the
open bay visiting could be problematic, both for the family and for the wider population
of the ward. Spending time with a dying patient while the routine work of the ward
went on was potentially distressing for family members, some of whom were also concerned
about being a source of discomfort for other people on the ward who might realise
that their relative was dying and consequently be distressed.
The family carers of two patients reported having very good relationships with staff
on the ward. In both cases they had talked several times with the consultant who was
caring for their relative, they felt accepted by ward staff and they encountered no
difficulties in accessing the information they needed. Three family carers reported
very poor relationships with staff, to the extent that they felt abandoned and unsupported.
In two cases carers struggled to find a member of ward staff to inform when their
relative died. Most carers, however, reported an experience that was somewhat neutral;
their expectations were low so they were not disappointed, or they made excuses for
what might otherwise be considered shortcomings in staff communication with them.
Receiving bad news: Clarity
Recognising that their relative was dying was a critical point of transition for carers.
Some respondents expected their relative’s death. In other cases, when it came, the
death was sudden and unexpected. For others it was a gradual process of realisation
as their relative became increasingly ill and frail.
Carers came to the understanding that their relative was dying in a number of different
ways. In conversation with the doctor one daughter was told bluntly that her mother
was dying imminently:
Right, she says, ‘What, what I’ve got to tell you isn’t nice’, she says, but, she
says, ‘Your mum’s stomach has rotted…’, I says, ‘Right.’ So she says, ‘So, she needs
an operation. To save her life.’ So I says, ‘Okay.’ So she says,’ But, because we
can’t stabilise her diabetes.’ she says, ‘We cannot operate, she’s too weak.’ So I
says, ‘Okay.’ She says, so I’m thinking, ‘Okay, so, they can’t operate now, they’ve
got to get, sort the diabetes out.’ So, I says, ‘So, what happens from here?’ So she
says, ‘Well, if we don’t operate, your mum will die.’ So I says, ‘Fair enough.’ I
says, ‘So, how long do you reckon my mum’s got then, without the operation?’ She says,
‘An hour, maybe two.’ Well, I was devastated. (Daughter of PNCA402, an 83 year old
female patient)
The bluntness of this communication made a strong impression on the patient’s daughter.
It left her in no doubt that her mother was dying, but added to the distress involved
in this experience.
Some carers came to an understanding that their relative was dying when their suspicions
were confirmed by professionals. One daughter, for example, spoke about how she had
‘thought he (her father) looked like somebody who was dying’, which made her receptive
when the doctor told her that this was the case:
and the doctor had pre-warned me that the end of somebody’s life through fibrosis
isn’t pleasant both for any party…on the night that he was dying, I thought they were
very, very good…when we came, obviously, they knew when we came in, what the situation
was. (Daughter of PNCO206, an 86 year old male patient)
This respondent felt included in decisions about her father’s care and thought that
ward staff were supportive and understanding, as did this daughter:
And dad hadn’t been eating and drinking for a long while and there was problems again
with his aspiration so he, he (consultant) felt really that he was at the end of his
life so we, we took a decision to withdraw… any sort of feeding… you know, it was
dad’s time, and really, it was dad’s time. (Daughter of PNCO203, an 85 year old male
patient)
This patient died during his second admission to Oak ward. His wife and daughter had
visited regularly and had helped him with his meals. They both felt that they got
to know ward staff and that they were fully consulted about all decisions regarding
his care:
Because he spent nine weeks on the ward, from the end of April, we knew them (staff)
so well and I was going at lunchtime to help with feeding him and…we just knew the
staff so well and they were so caring. (Daughter of PNCO203, an 85 year old male patient)
Receiving bad news: Lacking clarity
Not all family carers knew that their relative was assessed as dying, and thus the
death was sudden and unexpected. Some respondents reported that they had either not
been told explicitly that their relative was dying, or they had not been told in a
way that enabled them to understand or accept this news. Sometimes it was only through
a process of retrospective reflection that carers realised the significance of events
and interactions with staff. One female patient’s partner, for example, initially
thought that he had not been told how ill she was, but he decided during the course
of the interview that perhaps he had been told but had forgotten, or not realised
the significance of what had been said at the time:
I’m not too sure when I actually realised it, when it hit me when I was on my way
back to the house, but I’m not sure quite when I realised it, yeah. I think they did
actually. I think they did. Because I had a little chat with them at one point. And,
(…) I think they did tell me that actually … (Male partner of PNCA401, a 96 year old
female patient).
This participant was not alone among carers in being unsure about what the family
had been told, or in failing to interpret this in the way intended by staff. The wife
of one patient was told that he was dying and understood what she was told. However,
she and her husband had been through similar experiences before and this prior experience
led her to believe that he would survive on this occasion, too:
(she said, he’s) ‘really poorly’. I said, ‘Yes, clearly, I realise that, we’ve been
through this many times before.’ And she said ‘Well, we don’t think he’ll pull through
this time.’ So, that was a shock… So, anyway, about three o’clock in the morning,
he kept waking up, and was sitting holding his hand and he was squeezing my hand really
hard and I thought, No, this isn’t what a dying man is, he’s too strong, he’s fighting
this again. (Wife of PNCA403, a 63 year old male patient)
Her confidence in her husband’s survival was so strong that she went home, and so
was not with him when he died which was devastating for her. Prior experience of occasions
when her husband had almost died prevented her from fully assimilating the information
she was given about her husband’s prognosis. In a highly charged emotional state,
it is understandable that carers may fail to comprehend what is said by staff, particularly
if this is framed in vague and euphemistic terms. There is a tendency to construe
developments in line with desired outcomes, and to place greater reliance on the concrete
evidence of past experience rather than the anticipation of professional judgement.
In addition, the way in which staff offer information in a vague and sometimes equivocal
fashion exacerbates this situation.
Carers could misunderstand what ward staff said, as sometimes staff spoke to family
carers in ways which were ambiguous and with meanings that were unclear to the carers.
One patient’s wife, for example, was told that she could visit her husband outside
scheduled visiting hours, but the implications of this were not explained to her:
He…was always asleep when I went. And the nurse said, ‘Well, you can come in, [he’s]
bit more alert in the morning, come then.’ I ought to have just [realised], alarm
bells rang, but anyway, he woke up then, he looked at me, says, ‘Hello duck’, smiled,
went back to sleep. (Wife of PNCO201, an 85 year old male patient)
Later his wife realised that she had been given more access to her husband because
he was dying, and she blamed herself for not understanding the situation.
What seems to be critical in family carers’ understanding that their relative is dying
is the alignment between staff and carer perspectives. PNCO201’s wife realised that
he was approaching the end of his life, but believed that he had another one or two
years of life. PNCA401’s partner and PNCA403’s wife quoted above were not receptive
to the prospect that death was imminent, and did not easily accept or internalise
the messages conveyed by staff. In contrast, the daughters of PNCO203 and PNCO206
had already realised that their fathers’ deaths were likely to occur soon, and consequently
were receptive to what they heard in their discussions with staff on the ward. When
there was a lack of clarity in communication, whether through the use of euphemistic
or vague language, this could lead carers to develop or perpetuate expectations which
health professionals would realise were unrealistic in the event that carers’ understandings
were successfully explored.
Seeking a hearing
It was not always easy for carers to find someone on the ward to whom they could speak.
Doctors, particularly the consultants who have the requisite authority to divulge
a poor prognosis, were not present on the ward all the time and their schedules often
do not fit with visiting hours:
Staff Nurse1 was going round the bay with the observation machine, she gets into quite
a tetchy argument with B4’s
male visitors. They are trying to find out what is going on with their mother. Apparently
they had had a phone call from a doctor yesterday and they are keen to have another
talk with him. They are trying to get Staff Nurse1 to arrange an appointment with
the doc for them – Staff Nurse1 is irritated about this and tells them that if they
want to see the doctor they will have to come on the ward and gives them some very
general times when they might coincide with the doctor’s presence and availability.
Male visitors are not happy with this – clearly feeling that the doc should be more
accessible… The male visitors are quite persistent. They can’t believe that it is
necessary for them to make a special trip to the ward in order to see/talk to the
doctor… The situation does not seem to be resolved before Staff Nurse1 manages to
terminate the encounter and move on (Research observation notes, Fir).
In addition, family carers were not always sure who it was they needed to speak to
about a particular issue:
I wouldn’t have known who to ask. And there wasn’t really, I mean, the doctors were
so busy, so, you know, trying to see a doctor and stuff, it was a bit difficult. (Daughter
of PNCO202, a 75 year old male patient)
Although nurses’ work roles required them to be present on the ward most of the time,
carers could still find it difficult to find a nurse who was able to answer their
particular query. The effort to find a member of staff to talk to could also be a
source of frustration for the carer:
Only because, you could never get hold of anybody. I mean, they were so busy. I mean,
sometimes you’d think, ‘Where are they?’ (Daughter of PNCO206, an 86 year old male
patient)
Staff tended to have little contact with carers during their visits to the wards,
with the onus placed on carers to seek out a member of staff if they wished for information.
Doctors, like nurses, could be difficult to pin down:
Doctors huddle in 2s and 3s to talk in the corridor – this enables visitors to target
them for a talk and information – though sometimes have to lurk for a while until
they succeed in getting their attention. My impression is that they tend to be fobbed
off, and that the doctors don’t seem to be forthcoming with information… On his way
up the ward a pair of relatives from another bay collar him for information about
their relative’s discharge tomorrow – he is rather brusque and unhelpful, as far as
I can see. Later on the couple manage to engage a nurse who is evidently much more
constructive and useful in her response… The older woman tries to engage with a doctor
– but is rather rebuffed, I thought, as he turns quickly to leave the ward (Research
observation notes, Ash).
Carers tended to perceive staff as being very busy, and lacked a sense of entitlement
or confidence in approaching staff members directly or pursuing their wish for information.
Family carers tended to wait for information to be offered to them, but reported this
did not often happen.
Carers’ assessments of staff communication were also shaped by their expectations
of staff behaviour, and carers were keen not to appear too critical:
I think my husband went back out and said to the lady on the desk, ‘Can I speak to
the nurse who’s looking after her?’ And she said, ‘The nurse has gone on her break.’
So I said to my husband at the time, ‘Well, everyone has to have a break, you know?’
[laughs] That is the way I look at it, everyone has to have a break. It, we weren’t
complaining because she wasn’t there, it just would have been nice if, if the lady
who’d gone on her break had said, ‘Can you greet Mr and Mrs S and, you know, reassure
them.’ (Niece of PNCF801, a 91 year old female patient)
Several respondents described the demeanour of ward staff as being distant and clinical,
but qualified any implied criticism by explaining that this was what they expected
and consequently was not considered to be inappropriate or lacking.
Misdirection from external cues
In some cases carers had mistaken views about what was happening with their relative
because they misinterpreted cues that they observed in the immediate environment.
One daughter was pleased when she learned that her mother had been moved from a side
room onto the open ward. She said:
When I left her, she was in a wa- in a room on her own. When I got back, I was just
going back to the room, and they said, ‘Oh, your mum’s been moved down into the ward.’
I thought, Oh, this is good news. (Daughter of PNCA402, an 83 year old female patient)
However, the reality was that, even though she was recognised to be dying, the pressure
on beds resulted in the patient being moved out of the side room to make way for another
patient who required isolation because of infection.
Feeling abandoned
Some family carers, when their relative came close to death, described feeling abandoned
by staff on the ward. PNCA402’s daughter, quoted above, described how she and her
family were left alone with her dying mother on the busy ward during regular visiting
hours. She was aware of other families visiting their relatives and asked a nurse
if she could close the curtains round her mother’s bed. She went on to say:
Nobody came to see her after that. Nobody came to see if we was okay. Nobody, nobody
even come to explain to, such as my brother and the rest of the family, why is this
happening. It was just left to me. And, and then, my mum died within the hour. (Daughter
of PNCA402, an 83 year old female patient)
When she recognised that her mother had died, the patient’s daughter rang the bell
but no one came. Eventually she went to find a nurse and inform her that her mother
had died. The partner of a male patient had a similar experience, when she and her
partner were left alone as he was dying. She, too, struggled to find someone to inform
once he had died:
But he didn’t take more than like, less than a minute, less than half a second, so
I pulled the curtain round and I sit with him for five minutes til he completely take
the last breath. But the problem is, what irritates me, because I couldn’t find anybody.
Because the time …at that time, I just need somebody to be there. (Partner of PNCO205,
a 68 year old male patient)
The cases described here illustrate a lack of awareness on the part of staff of the
emotional distress that carers keeping vigil for dying patients on the wards may experience.
However, carer discontent is defused by the low expectations that they have of how
staff should behave. They often make allowances, expressing their awareness that staff
are very busy, and describing their own negative responses as inappropriate. Carers
tend to have a low sense of entitlement or expectations of support. This also illustrates
the collaborative work that relatives do to help the ward run smoothly, by containing
and controlling their emotional reactions and minimising the demands they make on
staff.
Case study
The following case study highlights a number of the communicative issues as experienced
by carers, consideration of which will be picked up in the Discussion section below.
PO104 was admitted with severe dementia and an infected wound. She developed kidney
failure and pneumonia. A DNACPR order was signed and three days later it was recorded
in her notes that care was primarily palliative. One of the doctors spoke to her family,
informing them that her prognosis was ‘very guarded’ and he recorded in her notes
that they understood. A few days later the doctor spoke to the family about LCP; they
were against stopping treatment and at this time the doctor decided to continue active
care. Open visiting hours were in place for PO104’s family. Consultant recorded ‘I
suspect ?50/50 (survival) regardless of what we do’. PO104 had a buprenorphine patch
to help alleviate pain, but her family were recorded in her notes as disapproving
of this. The ward recorded that after discussion the patient’s son ‘seemed to accept
this’, but family stated during interview that they did not agree to its use. The
possibility of the patient’s being fast tracked home to die was discussed and explored,
but did not happen. Three weeks after admission PO104 was placed on the LCP, and according
to her medical notes her daughter in law was informed. At this point she was to be
treated symptomatically and all observations were to be stopped. The following day
it was recorded in PO104’s medical notes that the doctor had talked with the family
about LCP, and that they wanted her to be given fluids but not analgesia. PO104 died
four days later, and her family arrived on the ward shortly after her death. During
an interview with PO104’s son and daughter in law it was clear that they did not understand
that she had been placed on the pathway with the goal of ensuring she was kept comfortable
throughout the inevitable process of dying, and they thought that she was being actively
treated until the moment of her death. While PO104 was on the LCP, her daughter in
law queried with a doctor why nurses were no longer carrying out observations. The
doctor told her that it was no longer necessary to do so, but the carer thought the
doctor was simply ‘sticking up for’ the nurses, and their poor care. There was a high
level of misunderstanding between what the family were told, what they understood
and what medical and nursing staff thought the family understood. PO104’s family were
unaware of the DNACPR order and would not have agreed to it. Staff members who were
interviewed and spoke about this family described them as not being ‘on the same page’
as staff; as being ‘in denial’; as being ‘a little bit strange’.