Difficult Conversations with Dying People and their Families

36 Pages·2014·0.23 MB·English

Difficult
conversations
with dying people
and their families
Marie Curie Policy and Public Affairs
March 2014
End-of-life needs and attitudes: review summary
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Difficult conversations with dying people and their families
Contents
Introduction 4
The research approach 5
The ideal: a good death 7
The journey 10
The family 17
The system 20
The difficult conversations 22
The unmet needs 26
Conclusion 31
Appendix 1: Anonymised details of participants 33
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Difficult conversations with dying people and their families
Introduction
Marie Curie Cancer Care is a leading provider of care and support for
terminally ill people and their families, and reaches more than 38,000 people
each year. This care is provided through the Marie Curie Nursing Service and
our nine hospices across the UK. We also campaign to improve the quality of
end of life care for all, regardless of diagnosis, location or other factors.
We believe the type of care available should be Our ageing population, together with ongoing,
based on what individuals and their families need, long-term financial constraints across the health
rather than what works best – or is easiest – for and social care sectors, mean we must face up to
the health and social care system to provide. the challenge of providing care for more people
For this reason, we have worked with Oxford over the coming decades, with less money. It is
Strategic Management (an independent research often overlooked that an aging society means
organisation) to talk to terminally ill people, their more deaths and an increased need for the
carers and their families about the type of services services that terminally ill people require.
they and their loved ones used in the last few
weeks and months of life, and what gaps exist in It is essential that, as we face the twin challenge
the care they received. In some instances we spoke of demographic and financial pressures, we
directly to people who were dying, while in others, configure and deliver services in a way that works
to bereaved family members and carers. The for terminally people, their families and their
nature of these ‘difficult conversations’ meant carers. Now is the right moment to take stock to
the research had to be handled with care, and enable us to prepare for the major changes which
with support provided to those who needed will take place over coming decades. It is vital that
additional assistance. we learn from terminally ill people, their families
and carers about what currently works and what
The overriding goal of all who contributed to does not. By speaking directly to those who have
this project was the desire to improve care received or witnessed care in different settings
and support for other terminally ill people and (in their own homes, care homes, hospices and
their families. They wanted the good and bad hospitals), we will gain a better understanding of
experiences of care they experienced to help shape what services are like and how they impact upon
the care available to others in a similar position in those who use them. This will help ensure that the
the future. The clear wish was to see the quality care we deliver in future is genuinely built around
of care available to terminally ill people improve the needs and wants of terminally ill people, and
across all care settings. those around them.
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Difficult conversations with dying people and their families
The research approach
Research objectives and purpose Interviews lasted between 75 minutes for phone
interviews to over three hours in a small number
We placed terminally ill people and their families of cases for face-to-face interviews. Face-to-face
at the heart of the development and design of our interviews were recorded (with permission) and
research in order to: transcribed, whilst extensive notes were taken
• gain a deeper insight into the needs of terminally for telephone interviews to aid the report-writing
ill people and their non-professional carers, process. In total, 26 conversations were held with
including their practical, physical, emotional and people who were terminally ill, and with current
spiritual needs, and the extent to which they and bereaved carers.
are met
• understand experiences across the journey from The aim at the beginning of the project was to
diagnosis to death recruit terminally ill people, and current carers of
• consider (retrospectively via carers) how the people with a terminal diagnosis. Initially, for the
needs of the terminally person (and their own purposes of the study we sought to focus on those
needs) changed over time, and understand the with a terminal diagnosis who were ‘not expected
experiences and needs of carers in the immediate to live beyond the next 12 months’. However,
period following the death of their loved one whilst recruitment of those with a ‘terminal
diagnosis’ was relatively straightforward, the
Insights from this qualitative research provide a difficulties in putting a time frame on diagnosis,
very human dimension to help: and unexpected events, meant that identifying
• develop a ‘journey map’ of end of life experiences those who were ‘not expected to live beyond
which focuses on needs both met and unmet 12 months’ was difficult to achieve in practice.
• identify services, products and information For example, a person with chronic obstructive
terminally ill people and their families have found pulmonary disease (COPD) had been given the
or might find helpful at different stages post- news that she was at ‘end stage’ (meaning ‘nothing
diagnosis, and whether these differ by disease more can be done medically, with palliative
types treatments only’) seven years ago, whilst a
• identify powerful individual stories and person with cancer had been told that they had
anecdotes which give a deeper understanding of exhausted all available treatments, including new,
the experience and what might be done to make experimental options, leaving her to estimate the
it a more positive one for all concerned likely timeframe.
Thus, the sample achieved was based on
Method and sample the following:
• Terminally ill people had all been given a terminal
The research adopted an ethnographic approach diagnosis – meaning that the only treatment
which places a strong emphasis on gathering available was palliative care.
qualitative data in order to initiate the telling of • Current carers interviewed were all looking after a
personal stories in the form of a conversation. relative or partner who had been given a terminal
These conversations have then been used to diagnosis (as above).
form a narrative which is driven by the subjects • Bereaved carers had all looked after a partner or
covered, points of view expressed by interviewees close relative who had died within the past year
and built around their own words. At the heart or so.
of these conversations were a series of face- • The terminally ill people had a range of different
to-face and telephone interviews. The length of terminal conditions and in some instances
interviews varied depending on the preferences multiple conditions. The majority were people
of the interviewee and the type of interview used. with cancer.
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Difficult conversations with dying people and their families
The sample was as follows:
Terminally ill people 8
Current carers 4
Bereaved carers 14
Total 26
In total, 13 interviewees were recruited through
external organisations, personal contacts,
and/or by asking those contacts to suggest
other potential participants; the remainder were
recruited through Marie Curie Cancer Care and
the National Council for Palliative Care (NCPC).
Each participant is identified throughout this
report by their status (terminally ill person/carer/
bereaved carer and the disease/condition. Further
anonymised details of the participants are set out
in Appendix 1.
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Difficult conversations with dying people and their families
The ideal: a good death
Overview with nights a particular source of concern
• inadequate physical and personal care that
A ‘good death’ is a term frequently used in policy reduces dignity
documents and by professionals involved in end • person still in denial – or other negative state
of life care. However, in this research, it was an
expression only used or recognised by a few
participants who were actively engaged with Awareness of what is meant
NCPC, the Dying Matters coalition, or who were by a ‘good death’
aware of debates about the use of the Liverpool
Care Pathway. Nevertheless, there is an implicit Not surprisingly, the idea of planning a ‘good
understanding of what a ‘good death’ could mean. death’, or even planning one’s own or a close
relative’s death was not a concept familiar to most
A good death is usually associated with: of our participants. This level of acceptance of the
• being pain-free – pain control on tap, reality of death by the individual was seen as the
administered by experts exception, rather than the rule:
• being peaceful and calm, with those chosen by
the terminally ill person present and not alone “My mother-in-law, after the diagnosis
• having the role and emotional needs of carers in hospital, decided she didn’t want to
(and wider family) recognised and respected. have any chemotherapy. She didn’t want
• a feeling of control over the process (for the to go into a hospital, to see anybody at
terminally ill person and family) [the hospital]. She wanted to come home
• a private space for family being available
and take her chances and that was her
• being in a hospice (for some)
choice. … My mother-in-law took it to the
• being at home (for some)
extreme. She closed her bank accounts
• knowing what to expect, and who does what
down and narrowed it down to one. She
• being able to summon help 24/7
got rid of all her credit cards and things.
• an appropriate level of physical and personal care
She’d labelled ornaments, given me letters
that respects dignity
to post. She’d put everything in one place
• individuals accepting their diagnosis and being
for me. She’d made all her own funeral
at peace
arrangements… after a period of being
Conversely, a ‘bad death’ is associated with: really upset in hospital, just a couple of
• poor or inadequate pain relief, administered by weeks, (she) decided to deal with it.”
healthcare professionals not used to dealing (Current carer – mother with pulmonary fibrosis)
with death
• chaos The concept was really only understood and
• being alone accepted by those involved with Dying Matters
• carers being excluded from decisions, family kept and NCPC, a minority in our sample. Even those
in the dark, procedures not explained who see planning a ‘good death’ as an important
• lack of feeling of control thing to do find it very difficult to talk about their
• lack of private space / privacy and dignity death to their family:
• being in hospital (and at worst A&E)
• a confusing and changing cast of healthcare
professionals sweeping in and out of the process,
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Difficult conversations with dying people and their families
“It must have been after the last time I Carers described a general idea of what they
was resuscitated – I’d had a bad night hoped would happen, sometimes having
and my cousin had died recently, and so established a relationship with a hospice with the
the next day I had a talk with M about it. vague idea that this would be the ideal for the
I discussed it with him and said it wasn’t individual , but had not discussed a specific plan as
such with their loved one. There was also a feeling
fair on the family to have to make the
that nature should be allowed to take its course,
decision, so then we sat down as a family
with the idea of ‘planning’ (where introduced by
and I explained to D and A what I wanted…
healthcare professionals) somehow imposing an
It’s the worst thing I’ve ever had to do – it
unnatural control over the process, ‘playing God’,
was terrible and I felt terrible. I told my
interfering with destiny.
mum and dad too, that was before their
dementia really kicked in and they were
very upset, especially my dad.” The principles of a good death
(Terminally ill person with COPD)
Although there was little conscious awareness
For some, support for the notion of a good death of the concept of a ‘good death’, there was an
has been prompted or reinforced by anecdotes implicit understanding of what it would involve
or experiences of ‘a bad death’, and many in the general ideal of a calm, peaceful, pain-free
respondents had an anecdote where the final death in pleasant and private surroundings – with
hours were undignified, painful or chaotic. Any care from a team who were already familiar to the
experience or awareness of what a ‘bad death’ individual and their family.
might involve helped define the conditions of a
‘good death’ and prompted people towards a Although dying at home was often the preference
more proactive approach to management of their for some individuals and carers, for many we
own death. talked to, this ideal was exemplified by the local
hospice. Several individuals and carers had started
For most of our participants, plans around death to build a relationship with the local hospice from
tended to be vague. Individuals (those interviewed an earlier stage (post-diagnosis), using it as a
and those discussed by current and bereaved resource for various kinds of advice and support,
carers) usually want to focus on and just talk as well as equipment. This was done to ensure
about life, and avoid any specific reference to their continuity of care, and ultimately an experience
own death, making it quite clear in body language that could be described as a ‘good death’ (although
and tone of voice that this topic crossed a line. this phrase was rarely used by participants).
This was particularly apparent amongst those with
a very positive attitude, and determined to hang The holistic approach of the hospice was especially
on to life. commented on and appreciated in the context of
the complexity of emotional, spiritual, physical
“I’m never a patient unless I’m in the and medical needs. In our conversations there
hospital. I never feel like a patient and I was frequent reference to the consideration (and
don’t want to be treated like one either. I inclusion) of the needs of the whole family group
dread being physically disabled in some (eg counselling and other support for carers),
way and everybody going, ‘Oh the poor willingness to become involved early on in the
process post-diagnosis (and not just being there
thing’. But in the meantime I just try and
for the last few days), and the offer of what
be as normal and carry on, that’s being
seemed to be an ideal combination of empathy
positive. I haven’t got my head in the sand.”
and practical help throughout (advice, counselling,
(Person with cancer)
complementary therapies, day care, respite care,
equipment, medication).
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Difficult conversations with dying people and their families
“I always said when I die I don’t want to she just wants to hear mum having a tiff
die at home, I want to die, if possible, in a with my brother about something or mum
hospice. I don’t want to put on anybody and dad having a laugh about something.
the burden of having to look after me at The TV is on. Those noises I think are
home, and I think if I can go to a hospice if comforting noises of family around all
there is a place then… I’d be much happier.” the time.”
(Person with cancer) (Bereaved carer – daughter with cancer)
In some instances this support extended
into bereavement. Achieving a good death can
be thwarted by unforeseen
“I’m very lucky, I have bereavement developments
counselling once a week and I found that
a huge, huge support, that is amazing. I’ve In some instances, the ideal was not achieved (or
been having that now nearly six months… will not be) because circumstances had taken over,
the hospice provides a group for us with no beds available in the hospice, individuals
deteriorating more quickly than expected, or
bereaved. There’s a group of people who
finding themselves in hospital for acute infections
have lost their husbands and partners,
or other procedures:
and we meet once a month at the hospice
just for chats and practical stuff because
“We had a lot of equipment delivered to
we’re all in this together and we’ve all had
the house but unfortunately he was too
different practical issues – and then we try
sick. And then they offered to bring him
and go out once a month as a social group,
to the hospice here on the Tuesday, they
to do something fun.”
said there was a bed ready for him, and
(Bereaved carer – husband with cancer)
they said sorry he’s too ill to move and he
was dead the next day. So it all went a bit
Some had achieved their ideal, either dying
wrong if you know what I mean.”
at home with appropriate levels of pain relief,
(Bereaved carer – husband with cancer)
surrounded by their family – or at the local
hospice, with the individual in a peaceful or This idea of someone being too sick to move is
accepting frame of mind: a common one, with individuals having to stay
where they are, regardless of previously stated
“We carried her from the bedroom preferences or planning, because of a rapid
downstairs to the family room where we deterioration in their condition:
had a hospital bed in the daytime but when
“So he was admitted to [the hospital] and
she was not conscious. Even so we were
had his radiotherapy because he needed
all just around there with her. … We had
it. But after the third day of radiotherapy
our daughter here, she was in that living
they said, ‘He’s just going, we’re losing him.
room which is where we watch TV and
There’s no point in having any radiotherapy,
make our meals and read our newspapers
it’s too late for him to go to the hospice as
all the time, every morning you brought her
well.’ They just couldn’t move him and he
down here, we carried her there and when
died shortly after.”
she was sitting in chairs, we made her as
comfortable as possible and eventually (Bereaved carer – partner with cancer)
we had the hospital bed in there because
This underlines the reality of dealing with death
we felt, and I’m sure this was right, that and dying – that no matter what an individual
she just wanted that towards the end. I’m or their family wants or plans, there are never
not sure she was conscious yet but maybe any guarantees.
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Difficult conversations with dying people and their families
The journey
Overview We now explore these issues in greater detail.
When faced with a terminal diagnosis, every
individual and family begins their own journey Differences in the journeys
towards the end of life. This journey varies towards end of life – cancer and
according to the conditions, circumstances and non-cancer diagnoses
the people involved. The journey is a physical,
emotional and practical one, encompassing For people with cancer and their carers, the
diverse needs which change over time, often in journey is perceived to be very up and down, with
unexpected ways or at short notice. However, periods of debilitating and exhausting treatment
these different journeys tend to converge at the (such as chemotherapy) requiring fairly extensive
very end of life, with common experiences shared physical and practical care from relatives. This
by people regardless of condition or settings. Not includes accompanying him or her on trips to
meeting important needs can make this journey hospital, and support as they recover from the
and the period that follows more distressing than effects of their treatment. There are alternating
it needs to be. periods of optimism, hope and relative ‘wellness’
where the individual can resume a fairly normal,
independent and active day-to-day existence, and
There is no single journey in many instances look after their own physical
needs. During these ‘normal’ interludes, the role
Our conversations with terminally ill people, of carer may be reduced to emotional support for
carers and bereaved families reveal many types visits to the oncologist. Availability of new and
of journey, depending on type of illness, age, experimental treatments for some forms of cancer
level of family support, financial circumstances, means that the cycle of ups and downs can be
geography and –equally importantly – personality repeated and prolonged, encouraging bouts of
and individual coping strategies. This concept optimism among individuals and carers:
of the journey is important because it indicates
the changing nature of experiences and needs “He was really poorly to start with. As
between diagnosis and death. While journeys may soon as he had some chemotherapy it was
differ, a number of common themes emerge: amazing. He really started to feel well apart
• The needs of individuals and carers change as from the side effects of course. But the
they progress through their journey. treatments were incredible… he was very
• There are perceived differences between people
ill for about four weeks and then slowly he
with cancer and non-cancer diagnoses in terms
started to recover…
of the pattern and flow of practical, physical and
(Bereaved carer – partner with cancer)
medical needs.
• The ability to cope with the diagnosis and the The final stage requiring high levels of physical and
journey involves a set of changing emotional medical care, with special beds, other equipment
needs that may or may not be met, depending on and regular visits from healthcare professionals
personality, circumstance and beliefs. etc, is often relatively short – possibly a matter of
• The ability to cope with the journey can depend a few months, weeks, or even days before death.
on getting the right level of physical support, At this point, there is a much heavier and more
both medical and non-medical, as physical needs intense burden on family carers in terms of nursing
change and pain increases. care, management and administration of drugs
• Changes are not always anticipated, and plans and medical procedures, taking over personal
need to be able to adapt as the illness progresses. care and hygiene, ensuring comfort, and possibly
• The continuing needs of carers after death. helping with feeding and drinking:
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