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The average lay person probably is of the opinion that when the time comes to die, they will be able to do so in a manner and place of their choosing. In this dissertation we explore the validity of that view. We explore the initiatives that the government and the NHS have put in place to influence the provision of end of life care and we look at the current intentions for future work in this area.
We consider the actual trends of just where patients die and then
examine the various factors that influence those trends. Most
significant are the factors that pertain to the patient’s perception of
the nature of their illness and this is discussed in considerable
detail. We look at the influence that the way that the patient
processes the information given, and the degree to which healthcare
professionals collude with the deception ploys that patients tend to
use in end of life circumstances. We assess the extent to which this
colours the patient’s eventual decisions.
We then consider the various nursing models of end of life care,
together with the implications that each has on the eventual terminal
care of the patient. We examine the strengths and weaknesses of each
model and draw conclusions from them.
We explore the issues relating to the burden that falls on the carers
during end of life care. These can be physical, psychological,
occasionally social, and more recently, legal. We explore the
ramifications of the legal burden. This latter point is explored in
some depth, with reference to some recent high profile cases of
precedent such as Diane Pretty and others.
In conclusion we discuss the summation of all of these points together
with the overall relevance of their impact on the patient’s choice of a
place of death.
Introduction
In one respect, patients with terminal cancer have an advantage over
many other members of the population. They have the certain knowledge
that their life is ending. Clearly this is not intended to be a
flippant comment, but is at the very basis of the structure of this
dissertation. Most of us, without any known terminal disease, have no
idea when, where or even how we shall die. We seldom make any provision
for it and rarely give the matter a great deal of thought. (Hegel GW
1971)
For those among us who know that their life is ending, the matter is
often one of great importance and the subject of considerable
expenditure of both effort and mental energy. Between these two
extremes there are those patients who have the knowledge of a positive
diagnosis of a life threatening condition but either through false
optimism (The et al. 2000) or frank denial (Weeks et al 1998) chose not
to confront the possibility of death. These patients have their own
separate considerations and we shall consider the relevance of the
title to all three groups.
This is not an isolated phenomenon. In the region of 200,000 patients
are diagnosed with some form of malignancy every year and 120,000 will
die from a malignancy in the same time frame. (NHS Cancer Plan 2000).
If we take into account the number of people affected by each diagnosis
and death in terms of relatives and carers, we can appreciate that we
are considering very significant numbers
Where patients die is sometimes a carefully planned, structured and
rational decision made in consultation with the patient, their
relatives their medical advisors and any number of other interested
parties. They can actually die in circumstances of their own choosing –
whether that is their own home, a hospice or a hospital. They can have
access to a multitude of different agencies and expert palliative care.
They can elect to have members of their family and friends around
them.
In other circumstances, and certainly far too often, as any experienced
healthcare professional will tell you, it can be a social and practical
disaster with relatives finding that they can perhaps not cope (either
physically of mentally), with local shortages of nursing staff, with
medical staff being confronted with situations that they are not fully
familiar with, with sub-optimal pain relief, with an unexpected rush
on local hospice beds so that none are available when needed, (Bulkin
et al 1988) to name but a very few of the possible “disaster scenarios”
that can overtake the dying person.
In certain circumstances, it may simply not be possible for the
patients with terminal cancer to achieve all of their preferred goals
and the thrust of this piece is to critically examine the reasons for
this and to also examine the mechanisms that are currently in place
(and proposed) to try to minimise the likelihood of it happening.
Methodology
The methodology used in constructing this dissertation is comparatively
simple in structure. It has involved a great deal of reflection,
planning and contemplation. The major thrust of the piece comes from
the exploration of the literature which appears in the Literature
Review and which also forms the basis of the discussion elements of the
work.
The literary resources have been accessed from many sources, most
notably in hard copy from the post-graduate centre of the local
District General Hospital and the local University Library. Electronic
sources have also allowed access to a number of world-wide databases
although the majority of references actually used here are primarily UK
based work. There has also been considerable informal consultation with
professional colleagues. There has also been the less easily quantified
factor of my own experience which has also influenced my writing. To
the client: you may wish to put a précis of your own experience in
here.
Literature Review
The position of the NHS and central Government
In any review of the current position of a large body such as the NHS,
one has to acknowledge the fact that change and progress is a matter of
evolution. Whichever starting point one takes, it comes with the
realisation that it has a history. It did not arise de novo. It is the
function of all of the legislation and commonly accepted practices that
have gone before. It is therefore very difficult to start a review of
the current position with a statement of definitive fact. For this
reason, it is probably far more useful to examine the recent directives
and guidelines that have been produced and published by the central
bodies that are relevant to our considerations here.
The first one that we shall consider was published by the Department of
Health in July 2004. (DOH 2004). It came as the result of an
announcement by the Secretary of State for Health that £12 million was
being made available for investment over a three year period
specifically to improve the standard of care that people could receive
as their lives were ending. It arose as a direct result of the
preceding Paper “Building on the Best” (2003) which committed the NHS
to initiate training programmes to assist the provision of high
quality palliative care for terminally ill adults.
The Building the Best paper was published in December 2003 and was, in
turn the result of a consultation document called “Choice,
Responsiveness and Equity”. Its stated aim was to improve patient and
user experience, to build new partnerships between those who work in
the Health Service and those who use it.
All of these initiatives and directives ultimately stemmed from the
original NHS Cancer Plan (2000). Its full title included the phrase “a
plan for investment, a plan for reform”. The document was extremely
long and complex and was the result of many months of work by a great
many cancer experts from all areas of the country. It has to be said
that the document itself was excellent in terms of recommendations, so
it was indeed a plan for reform, but it was noticeably short on plans
for investment. It pointed to the £170 million a year that was spent by
the voluntary sector in providing facilities for terminal care and
pledged £50 million of Government money, although it did not say just
from which source it was coming. Its stated goals were to provide the
mechanism whereby:
It aims to reduce death rates and improve prospects of survival and
quality of life for cancer sufferers by improving prevention, promoting
early detection and effective screening practice, and guaranteeing high
quality treatment and care throughout the country. The Cancer Plan is
particularly committed to addressing health inequalities through
setting new national and local targets for the reduction of smoking
rates, the setting of new targets for the reduction of waiting times,
the establishment of national standards for cancer services, and
investment in specialist palliative care, the expansion and development
of the cancer workforce, cancer facilities, and cancer research.
Significantly, it called for the setting up of a post of “National
Cancer Director” to effectively oversee the whole initiative. Of
particular relevance to our considerations here was the part of the
document which calls for the development of:
Guidance that will provide evidence-based recommendations on how best
to ensure patients receive high quality information, communication,
symptom control, psychological support, social and spiritual support.
The guidance will cover care given in the community, in hospitals and
in hospices. It will also cover the needs of carers both during a
patient's illness and after bereavement. The evidence relating to the
benefits of complementary therapies will also be reviewed.
As we shall see later on in this review, many authors comment on the
lack of provision of facilities to cater for the psychological and
spiritual needs of the patient and very significantly, it also
addresses the needs of the carers, which we shall also be considering
in greater detail in due course.
Clearly it would be wrong to detract from such initiatives, but it is
easy to overlook the impact that a cancer diagnosis or a cancer death
has on a family. We have already considered the numbers involved on an
annual basis and although it is hoped that the majority of patient’s
have excellent end of life care, any experienced healthcare
professional can cite cases where treatment and care may have been less
than optimal. Such cases can have a lasting impact on the carers and
close family of the patient, who often can carry the burden of guilt of
self-questioning for many years after the event. (Nuland 1994)
We have mentioned, in passing, the role of NICE. This body is currently
compiling and assembling further guidance on just how the NHS support
and palliative services are going to be further improved throughout the
UK. (NICE 2005) we clearly cannot comment on these yet, and will await
their publication with interest.
Discuss the trends where patients with cancer actually die?
The title of this section is deceptively simple. One might be forgiven
for thinking that the actual decision about where a person with cancer
will eventually die is fairly straightforward. On the face of it, the
diagnosis has been made, the prognosis is clear so the medical advisors
can discuss the various options with the patient and they can come to a
mutually agreed decision.
In terms of the trends as to just where patients eventually die, it is
difficult to get accurate figures as there are so many variables. Many
studies have been done that look at death from all causes, but there
are not that many that actually look at the place and quality of end of
life care with specific reference to malignancies.
One such study is the Townsend (et al 1990) study which took as its
goal an examination of the quality of care and how it related to the
patient’s preference for the place of death. The significant findings
of this particular study, which was a prospective study with a cohort
of nearly 100 terminally ill patients, were that 84% were able to
express a preference of where they wanted to die and that was made up
of 58% wanting to die at home, 20% choosing hospital, 20% choosing a
hospice and 2% “elsewhere”. This sadly, does not closely reflect the
actual place where each patient died.
Of the patients who actually died at home, 94% stated that it was their
preferred place of choice. This should be contrasted with the patients
who died in hospital, 69% of whom had expressed a wish to die
elsewhere. The authors note that the questions were asked with the
patients being asked to assess the situation as they were at the time
of the interview. They were also asked just what their wishes would
have been if the circumstances had actually been more favourable. In
those circumstances the preferences changed to 67% preferring to die at
home, 16% in hospital and 15% choosing a hospice as their preferred
place to die.
The authors note that the major limiting factor in the decision not to
die at home was the perceived lack of facilities. They go on to
conclude that with a modest increase in expenditure, 50% more patients
could be supported in their expressed wish to die at home.
Pritchard (et al 1998) help our investigations a stage further with a
more up to date study which, this time looks at how the characteristics
of the patients correlated with the preferred place of choice of death.
The paper itself is quite long and complex, but the findings that are
of relevance to us are that most patients actually expressed a
preference for dying at home when they were asked at the enrolment
interview, but the majority actually finished up, dying in hospital.
There was considerable regional variation which probably reflected the
local circumstances and support available, but in this study, the
number who died in hospital varied, by region, between 29-66%. This may
very well indicate the degree of difference in the local support
available as the authors comment that, from their analysis, there was
not a significant difference in the clinical characteristics of the
patients as a group.
Significantly, the statistical likelihood of dying in hospital was
found to be a function of significance in the regions that had the
highest hospital bed availability. This may seem blindingly obvious to
the casual observer, but it does indicate the factors that are
predominantly considered, even when the patient has expressed a
different preference. The authors sum the findings up in the phrase:
Whether people die in the hospital or not is powerfully influenced by
characteristics of the local health system but not by patient
preferences or other patient characteristics.
It therefore follows that, in order to let more people realise their
wish of being able to die at home, there must be a greater investment
in the caring facilities at a local level.
One of the options in trying to realise this particular ideal was the
inception of the Hospital at home concept. Shepherd (et al.2005) looked
at the effectiveness of this scheme and compared it to hospital
admission as a suitable outcome for ill patients who needed hospital
care, including the terminally ill patients. The scheme involves the
provision of healthcare professionals to work in the patient’s home to
try to prevent the need for the patient to be admitted into hospital.
It has been tried in a number of regions in the UK with varying degrees
of success.
It is fair to comment that this particular study patients other than
the terminally ill were included, but the findings are still relevant
to the thrust of this piece. The salient findings included an increased
independence in some of those patients cared for at home. There was
also a general response of increased satisfaction with the carers in
the hospital at home scheme. The other major finding of relevance was
that , generally speaking, the patients who had hospital at home tended
to spend less time in hospital when they did have to be admitted, but
it did increase the average overall length of care given. The authors
did not find that the provision of the hospital at home facility was
necessarily a cheaper option than hospital admission, but that it did
free up hospital beds that could then be used for other purposes. The
authors also concluded that in trying to make the scheme work, it was
essential to take the views and wishes of the carers into consideration
as clearly a substantial proportion of the care fell on them, and it
needed their co-operation if it was to work well.
With specific regard to hospice admission, the trend towards hospital
based end of life care means that the tendency to stay in the hospice
system for terminal care is diminishing. We can point to data from
NHPCO (2004) which shows that the average length of stay in a hospice
has reduced from 25 to 20 days in two years. This implies that
admissions to the hospice are progressively being made at a later stage
in the trajectory of the illness. Another piece of information from the
same source indicated that about 34% of patients admitted to a hospice
died within one week of admission. Massarotto (et al 2000) reports that
20% of patients were virtually at the point of death at the time of
their admission.
In the Billings study (et al 2002), less than 10% of patients who were
identified by healthcare professionals as being likely to die within a
six month time frame were actually referred to, or received hospice
care. This implies that the vast majority of patients and their carers,
for whatever reason, did not have the opportunity to experience the
holistic type of care that the hospice movement typically has to offer.
Some authors have researched the specific factors which tend to
determine the place of death. We have already referred to work that
indicates the availability of hospital beds as being a significant
factor. Tang (et al 2001) have produced an excellent tour de force on
the issue, and rank that particular issue as the prime determinant of
the place of death. Support network robustness is considered the second
most important factor. Sadly, the patient’s own preference comes way
down the list. The authors also comment on the trend towards the
medicalisation of dying with the very pertinent phrase “the curative
aspects of cancer care have displaced the holistic care needs”
There are many factors that can conspire to derail the clinical plan. Let us consider some of them.
Does the patient actually want to know the exact diagnosis?
It follows that, in order to be party to plans and to have a meaningful
input into the facilitation of the care input into the terminal phase
of the management, the patient must be fully aware of, and prepared to
face the implications of the overall situation. This is not always the
case. In a seminal and excellent study on the subject, The (et al.
2000) examined the issue of collusion in the doctor-patient
communication about imminent death.
The study looked at 35 patients with small cell lung cancer which has a
notoriously poor prognosis, and followed them over a four year period.
The paper is worth consideration in considerable detail, as it has a
particular relevance to this article. Almost any experienced
healthcare professional will tell you that patients who have a
diagnosis of cancer will often follow a rollercoaster ride of emotion
which can be predicted with a degree of certainty. (Jennings 1997)
The and his co-authors describe a typical overview of the scenario
very well and as such, it is worth quoting a segment of the description
verbatim:
“False optimism about recovery" usually developed during the (first)
course of chemotherapy and was most prevalent when the cancer could no
longer be seen in the x ray pictures. This optimism tended to vanish
when the tumour recurred, but it could develop again, though to a
lesser extent, during further courses of chemotherapy. Patients
gradually found out the facts about their poor prognosis, partly
because of physical deterioration and partly through contact with
fellow patients who were in a more advanced stage of the illness and
were dying. "False optimism about recovery" was the result an
association between doctors' activism and patients' adherence to the
treatment calendar and to the "recovery plot," which allowed them not
to acknowledge explicitly what they should and could know. The doctor
did and did not want to pronounce a "death sentence" and the patient
did and did not want to hear it.
This paragraph sets out, very succinctly, one of the major stumbling
blocks in the path of trying to plan out the course of the patient’s
last few months. Looking at the situation from a detached,
dispassionate and purely clinical viewpoint, the healthcare
professional can say with a fair degree of certainty, that the patient
with a small cell tumour of the lung is going to die. The vast majority
of the patients with this condition would be dead within two years and
the five year survival rate is virtually nil. It therefore makes good
practical sense to start to discuss options, palliation, management
plans, hospice involvement, Macmillan nurses, and all the currently
available support options that are available, at the first opportunity
after the diagnosis has been firmly made.
This is seldom done because as the author correctly points out, doctors
do not wish to be seen to pronounce a death sentence for the patient.
One is reminded of the fictional representation of Dr Findlay by A.J.
Cronin, (1934) who was depicted as feeling strongly that an old lady
should be told the truth of her hopeless prognosis despite counselling
for the contrary by his older and more experienced partner, Dr Cameron,
who had been keeping the lady’s spirits up by telling her that she
looked better every time he saw her. Dr Findlay tells the lady the
truth and within a week she is dead. The story ends with the lady’s
husband talking to Dr Findlay who is expressing surprise that she died
so quickly and the husband is given the last line of the story by
saying “She was doing really well until you took away from her the one
thing that she had left – and that was hope”.
This illustrates the difficulty of the practical situation. Clearly
the old lady in the fictional story would not be in any sort of
position to consider her terminal care with the management plan adopted
by Dr Cameron, whereas Dr Findlay’s more truthful approach would have
allowed her to consider a multitude of management options which might
have made her life more tolerable in that last week. She willingly
chose to collude with Dr Cameron that her prognosis was not hopeless
and that was the key to enable her to maintain her particular quality
of life. The philosophical dilemma is a very real one, and one that is
faced by healthcare professional on a daily basis.
The and his colleagues help us further with an analysis of the possible
solutions to the problem. They suggest that the problem of patient /
doctor collusion does actually require an “active, patient orientated
approach from the doctor”. They suggest one novel solution and that is
the appointment of a “treatment broker”. In the words of the authors
“a person who is trusted by both patient and doctor and who can help
both parties to clarify and communicate their (otherwise implicit)
assumptions and expectations”.
The fact of the matter is that most patients who have a terminal
illness (and cancer in particular) do make it clear that they want to
know the diagnosis. They also want to know (usually in the next breath)
what their chances are of actually being cured. (Meredith et al 1996).
It is also a fact that many patients, when asking about their condition
simply do not want to hear that their prognosis is not good. (Costain
et al 1999) and can actually choose not to hear it even if it is
articulated by the doctor. (Leydon et al 2000)
The and his co-authors explore the reasons why patients appear to adopt
the attitude of false optimism and, of distinct relevance to this
article, just how this influences their choices that they eventually
make that reflect on their end of life care (Weeks et al 1998) and
treatment. (Girgis et al 1995)
This theme is expanded further by Dean (2002) who offers an analysis
of just how patients will use different coping mechanisms to deal with
the knowledge of a terminal diagnosis. He points out that patients may
choose to collude with their doctor about the chances of “cure” but
equally wish to talk in a more candid way to their nurses. This
dichotomy of approach is not unusual. Patients may well feel a need for
a theatrical façade to bolster their own psychological states as well
as to collude with the doctor and indicate that they are remaining
positive and confident in the doctor’s ability to try to achieve a
cure. (Curtis 2000).
In their more candid moments they may wish to get a more realistic
response from the nurse. (Lynn 2001). Clearly this is a situation that
requires a great deal of empathy and tact from the nurse, because the
underlying psychological mechanism may be that the patient is actually
looking for (possibly unexpected) reassurance of his own false
optimism. Dean therefore calls for a sensitive and patient centred
approach to the situation rather than a blanket approach to the
situation.
O’Rourke considers the same subject in his article (2001) and also
points out the impact that this can have on the choices that a patient
can make (or feel that they have open to them) if they are not
realistic about the actual trajectory of their disease process.
The whole issue of false optimism is fraught with difficulty. The
patient’s behaviour may not allow any leeway in the management of the
situation as a firm refusal to face the reality of the situation may be
impossible to break down. The healthcare professional must however, be
aware of the various issues involved and equally be prepared for the
fact that, after the event of either realisation of the truth or the
patient’s death, they are often portrayed as the victim of the
situation, with comments such as “if only the doctor had told me” and I
didn’t realise the seriousness of the situation”. The (et al) observes
that this will occur in situations where it is demonstrably not true
and documents cases where patients have been explicitly told but simply
chosen not to hear. Clearly this underpins the arguments that we make
about this being a crucial point when considering the patient’s choices
about where they want to die.
The nursing models of end of life care
In this review we must also consider the theoretical basis for care of
patients with terminal cancer as this will help to define the actual
choices that are open to the patient. A very recent paper by Dobratz
(2005) set this out very succinctly and is worthy of examination. The
early part of the paper is concerned with the development of nursing as
a speciality and need not concern us here, but the thrust of the
article is the importance of communication between all parties if a
optimal outcome is to be achieved. We will examine each of the models
presented in turn.
A) the holistic care model
The authors depicts a professional schism between the nursing and the
medical profession, with presentation of the concept that physicians
felt that once they had exhausted the possibility of cure, that end of
life care became the realm of the nurse. (Miller JB. 1971). We will not
argue the merits or demerits of that view here, as it is not relevant
to our considerations on this topic and it is arguably outdated in any
event. The reason that the author makes the point is that she believes
that the holistic approach is more indicative of the time that the
nurse can spend with the patient while administering end of life care.
The necessary components of that care include “complex care that is
associated with psychosocial patient and family issues, spiritual and
ethical concerns, and matters of grief and loss,” (Dobratz 1990). As a
result, nurses were able to adopt the care pattern that valued time
interacting with the patient and their family, which encouraged
emotional expression and open compassion. (Lowenberg 1994). Another
study on the subject (O'Berle K, Davies B. 1992) defined the holistic
approach as:
“supporting expressive, affective domains of valuing, connecting,
empowering, doing for, and finding meaning as components of the nursing
role.”
In short, the holistic model is defined by attributes which are primarily an affective and expressive skill set
Thus, in these various countries across the world, hospice nurses
confirm an affective, expressive skill set that is grounded in a
holistic care model. (Kruijver et al 2000)
B) The Hospice Care Model
This model is largely Holistic in its outlook (Bradshaw A. 1996). In
this model however, there is a greater emphasis placed on empowerment
and education , liberation and spirituality.
Abel EK (1986). Observes that the hospice model grew up as a result of
the backlash to the technological advances in medicine and “impersonal,
institutionalised dying…… when skills of diagnosis and therapy had
become irrelevant it was the psychosocial and spiritual skills that
took precedence. These care components assumed equal footing with
symptom management skills. Rasmussen (et al 1997) expand that concept
further by observing that:
“many hospices sought to break down the barriers of status with
nurses, physicians, social workers, pastoral care counsellors, and
volunteers all sharing equally as members of collaborative
interdisciplinary teams”.
The characteristic of the hospice model is that it is delivered in a
setting that is more reminiscent of the home than the hospital. (James
& Field 1992)
Jennings, (1997) noted the change of emphasis of the hospice model
throughout the ‘90s with progressive medicalisation and emphasis on
curative functions. He described the more modern definition as:
“a trinity of values: the first part is palliation and the relief of
suffering, the second arm is enhancing personal control and autonomy,
and the third, most important component, is “healing or making whole.”
In the context of this exploration of the issues, the author observes
that 90% of hospice treated patients expressed a wish to die at home
(Tang ST. 2003). They were more aware of the role of palliation and the
relief of suffering and this tended to play a considerable part in
their decision making process.
C) the Palliative Care Model.
Several studies were published which highlighted the shortfalls in
in-patient treatment in end of life care (Support 1995) (Field et al
1997). These studies were important in underlining the deficiencies in
analgesia and symptom management generally. They also pointed out that
over half of the “do not resuscitate” notices were written within 24
hours of death. These particular studies observed that, in their
particular cohorts that only 15-20% of patients actually died at home.
This underlined the need for a renaissance in palliative care. Billings
(1998) took the view that this effectively meant that hospitals were
being persuaded to adopt the hospice model of end of life care
In a fascinating and thought provoking article, Mann (et al 1997) made the observation:
“With palliative care now essentially a hospital-based program that
includes life-prolonging or life-sustaining technologies, palliative
care does not make a clear enough distinction between those who are
dying and those who are sick.”
The World Health Organisation helps us a little further with their own
definition of palliative care “the active total care of patients whose
disease is not responsive to curative treatment.” (WHO 1990)
What are the carers issues at the end of life?
The issue of the burden on the carer is equally not a simple one. The
carer is traditionally the title given to the relative, spouse or
friend who provides the bulk of the physical, social and spiritual
support. But in terms of “the provision of care” it can equally well
apply (not in equal measure) to the doctor, nurse or other healthcare
professional who is involved in giving advice or expertise to the
patient.
With this proviso in mind, before we consider the specific aspects of
this issue, we should perhaps consider the general aspects first. The
reality is that all agencies involved in end of life care should
ideally strive to achieve the same objective. That objective will, of
course, be determined by the needs, wishes and clinical state of the
patient. Friere (2001), in a rather different (but equally applicable)
philosophical area, pointed out the need for dialogue and co-operation
in order to achieve the desired goal.
A Good Death
Some commentators on the issue have used the term “A good death” .
(McNamara et al 1994). In this context, a good death has a very
specific meaning for the patient, the healthcare professionals and the
carers. McNamara defines it as:
“A social event in which the dying person is the central player.”
This is expanded by writers such as Seale (et al 2003), who observe
that in our current society a good death is more commonly associated
with reaching a good age and accumulating plenty of money. The latter
factor is generally equated with having control over the time and place
of death.
Fox (1997) makes the comment that:
If a good death takes place in a social and cultural context, allows
choice over place of dying, and is dependent on effective communication
and relationship building, the time-limited settings of hospital-based
palliative care programs may impede societal and cultural perceptions
of a good death.
The reduction in time spent in hospices and the fact that hospice
admission is often a very terminal event (see above). Both patients and
carers are effectively denied the time to undergo the process of
healing ( in the psychological sense) which, according to Jennings
(1997) is “achieving an appropriate closure to one's life through
reconciliation with one's past, one's self-identity, and with others.”
The role of the carer in all of this is critical. If the carer
understands the principals behind these concepts, either instinctively
or through experience, the goal of “a good death” is more realistically
achievable. In practice however, most carers will not have been able to
build up a sufficient experience of managing the end of life care and
so this is where the role of the hospice becomes important. As we have
discovered earlier, a significant proportion of patients (and therefore
their carers) experience less than a week of hospice care and then only
at the very terminal stage. They are therefore denied the opportunity
to be helped through the work of life closure. The other factor here,
is that it is a fact of end of life care that typically during about
the last two weeks of life, the patient tends to be overwhelmed with
physical symptoms, so it follows that ideally, work on life closure
should begin before this milestone is reached. (Lo et al 2002)
A factor that is often overlooked which impinges upon the carer’s role
is the fact that the patient often feels guilty for being a burden on
the carer. Those researchers who have investigated the issues of
quality of life (viz, Singer et al 1999) consistently find that the
dying patient commonly includes avoidance of being a burden to others
in their wish list of goals – together with avoiding a long dying
process, having control over the processes of dying for as long as
possible.
How can end of life care be improved?
There is general agreement that end of life care needs to be
personalised and tailored to the individual if it is to be optimally
effective. The very fact that there are now so many different options,
specialisms, and healthcare professionals that can be called upon,
cries out for a seamless service which encompasses home, hospice,
hospital and any other agency that can assist in the end of life care.
(Zimmerman et al 2004). This may well involve a need for healthcare
professionals and carers to be able to move across boundaries in a way
that has proved to be difficult up until now.
Part of that difficulty is the conceptual difficulty in distinguishing
between palliative and curative type of care. The NHS is currently set
up to provide both, but typically one or the other in any specific case
at any one time. The seamless continuity concept would ideally break
down these concepts into a end of life care package which could be
tailored to the needs of the patient. (Jennings et al 2003). The terms
that Jennings uses for the two extremes are “curative or carative”. A
rather artificial grammatical hybrid, but it serves to illustrate the
point very well.
One issue that we have not yet specifically addressed in terms of
impact on the carer is that of race and culture. The NHS Cancer Plan
(2000) makes the point that the black and ethnic minority communities,
together with the socially deprived, are much less likely to avail
themselves of the services that are being provided if they actually
consider them to be culturally or socially inappropriate. or for that
matter, if they are delivered in a culturally insensitive way.
Obviously this will impact on the patient as resources that might
otherwise have been mobilised as part of an end of life care package,
may not be taken up or sought. The knock-on effect of this is that this
will increase the burden on the carers. If they already come form a
socio-economically deprived group, this will increase their
difficulties further.
Legal issues
Any consideration of the issues that impinge upon the perceived burden
on the carer in an end of life care situation would not be complete
without a discussion of the legal issues that have hit the headlines in
the last few years. Surely there can be nobody who failed to be moved
by the plight of Diane Pretty and her husband carer, as they sought to
establish a legal precedent for what they saw as “a good death”. The
legal issues are very complex and it is fair to say that even within
the European Community there is enormous disparity in the ways that the
Laws are both framed and interpreted.
Before we enter into a discussion on the situation we feel that it is
appropriate to state that it is not the purpose of this dissertation to
take a view on whether euthanasia is morally right or wrong, we shall
confine our comments to the issues that relate to the end of life care
of the patient and their carers.
Huxtable (2004) gave us an excellent overview of the current legality
of the situation in his editorial in the BMJ. he accepts that the law
is “contradictory, confused and opaque” on the subject and suggests
that this has purposely not been clarified so as to allow a degree of
leeway for the courts in decisions where a doctor has had to tread the
fine line between adequate analgesia and active euthanasia.
The author highlights the plight of the carer when caught up in this
type of situation. One must have considerable sympathy for such carers.
Where do their loyalties lie? Do they try to support the person who
they are caring for ? Do they follow their own moral guidelines or do
they follow the rule of law? To some extent, it may be easier to answer
these questions if one has the luxury of physical and emotional
distance between the arguments and the physical reality of the
situation.
One can only imagine the emotional turmoil that adds to the burden of
the carer if they are actually involved in such a situation. Huxtable
cites the case of Patrick Kneen (Wainwright 2003) who committed suicide
with a large dose of sleeping tablets. Both his doctor, Michael Irwin,
and his wife, Patricia were arrested and investigated. Neither were
charged. The fact of the matter was that, had they subsequently been
convicted they would have faced up to 14 years imprisonment under the
Suicide Act of 1961.
The case of Diane Pretty is also worthy of consideration. Although not
strictly relevant to our considerations here (as she had Motor Neurone
Disease and not a malignancy) she sought to protect her husband from
prosecution should he choose to assist her in her own suicide. The
application was rejected by the Law Lords (R v DPP 2002) and this
decision was subsequently upheld by the European Court of Human Rights
( Application, 2002). Their reasoning and subsequent decision has a
great relevance to our consideration of the burden on carers. In
Huxtable’s words:
Both our courts and the European Court of Human Rights denied that the
right to life encompassed a right to choose the timing and manner of
one's death. The judges also felt that any arguments premised on
respect for patients' autonomy were outweighed by the state's interest
in preserving life and protecting the vulnerable.
The editorial continues with a call for reform. Reform is necessary,
not because one either agrees or disagrees with euthanasia but because
the law is unclear and many, admittedly well intentioned people can
unwittingly fall foul of it.
Another classic case of dilemma for the carer was illustrated by Win
Crew who was investigated by the police after helping her husband,
Reginald, travel to Switzerland to be assisted to die. The police
declined to prosecute in that particular case.
The other side of the argument is illustrated by the case of the
Johnson Family. The parents were the main carers for their daughter
Sara, who had Motor Neurone Disease. Their case is particularly
worrying ( the author uses the word “objectionable”) because the
parents actually did nothing positive to assist Sara’s death. In the
words of the Judge, they were guilty of “purely negative conduct” in
complying with her request not to summon help after she had taken an
overdose herself.
This case is particularly instructive to our consideration as, in
Huxtable’s analysis, it highlights three major dilemmas. These are
concisely presented by the author himself and merit quoting verbatim:
Firstly, it implies that one must not inform one's close friends or
relations as to any suicidal intent for fear of exposing them to
criminality. That hardly sits well with the intentions behind the
suicide bill, where it was stated that suicidal people should be dealt
with compassionately (hence its decriminalisation). (Hansard 1961)
Secondly, supporters of the bill believed that the offence would
require some "clear, positive element," so the Johnson’s' convictions
again seem to frustrate parliamentary intention.
But finally, and perhaps most importantly, in the healthcare context
the conviction conflicts with the assumed validity of a patient's
refusal of treatment, whether made contemporaneously or in advance of
incompetence.
In terms of Law, the case turned upon the dilemma of whether Sara was
deemed competent. This particular case was contrasted with that of Mrs.
B (Re B , 2002), a ventilator dependent adult who won the right to be
extubated. Huxtable assesses the situation on the grounds that the
difference, essentially was the fact that the Johnson’s were not
healthcare professionals. Does this mean that in Law, the advance
directives that are made by some patients are only valid in the setting
of the healthcare professional during the course of their work?
Discussion
Throughout this piece we have discovered that many authors constantly
refer to the sharp divisions that appear to be between hospital,
hospice and home as an appropriate place of death. We have found
evidence to suggest that the overwhelming majority of patients, if
asked early on in their end of life care, would express a desire to die
at home. We have also discovered that the reality of the situation is
that the majority actually die elsewhere – either in hospice or
hospital, with the trend moving away from the hospice towards the
hospital.
We have discussed Zimmerman’s view (2004) and Jenning’s ( et al 2003)
terminology, that the current situation, in practical terms, is that
the patient, in acknowledging the reality of imminent death, is forced
to make a choice between a carative or hospice or home based death or a
curative or hospital based one. The current trend, if unchecked, will
be for the home and hospice type of carative environment and ethos to
be overtaken by the drive to provide a curative one. Most of the
evidence that we have discussed, together with the majority of the
opinions reviewed, suggest that this is not the optimum condition for
the patient to achieve what McNamara (et al 1994) describes as a “good
death”.
We have seen the general agreement in the literature that hospice
involvement is beneficial (as judged by the majority of both
healthcare professionals and patients who have experienced it.). It is
a prerequisite of being able to take advantage of all that the hospice
has to offer that all the involved or concerned parties actually
confront the prognosis, together with any uncertainties or insecurities
that are associated with it.
Healthcare professionals and carers, and perhaps to a lesser extent,
the patient themselves, have to be prepared to confront the
realisation, or perhaps the actual admission, that the patient is
actually dying. There is a considerable burden placed on the patient’s
attendants who generally have to make that decision sensitively and
carefully. A misjudgement in that decision can have huge repercussions
for the overall quality of life of the patient, but equally a good
judgement can allow the patient to reap untold benefits that might
otherwise have been denied. (Lynn 2001).
It follows from this line of argument that there are situations where
the healthcare professional is put in a completely “no-win” situation
and the patient manipulates the situation so that the reality of the
situation that they actually find themselves in is not confronted. It
is then a matter of considerable clinical judgement on the part of both
the healthcare professional and the carer to decide if, and how to
break the deadlock. It is in these circumstances that the
“treatment-broker” advocated by The (et al ) may be of great
assistance.
The degree of sensitivity needed in these circumstances is underlined
in a section of the paper by The, which we have discussed elsewhere. He
observes the situation where there comes a point in the trajectory of
the illness where “adherence to the recovery story results in a
situation where the patient becomes aware of the poor prognosis but
does not explicitly acknowledge it”. The authors observed a fluctuation
between awareness and denial depending upon the situation. The patients
were involved in a completely ambiguous scenario where they were both
knowing and unknowing at the same time. The curiosity was that both
doctors and patients maintained this collusion and deception for some
period, even though they knew that cure was impossible and that death
was imminent, yet the authors observed that “they each told each other
stories of cures and recoveries” . This type of behaviour adds so many
more layers of difficulty in helping the patient make the right
decision with regard to their management and end of life care.
The converse view is taken by Helft (2005) who considers that collusion
with patients is necessary in order to maintain their morale and
well-being so we must conclude that there are valid arguments on both
sides of the divide.
The National Hospice and Palliative Care Organisation (2004) has produced a working definition of palliative care as:
“medical care provided by an interdisciplinary team, which is focused
on the relief of suffering and support for the best possible quality of
life for patients facing serious life threatening illness, and their
families.”
This seems to us as an important statement, as it addresses the need
for an integrated team of multi-skilled healthcare professionals and
the relief of suffering which is not specifically defined and therefore
(by inference) should be adopted in its widest interpretation of
physical, emotional and spiritual suffering.
We have discussed the suitability of the various options for end of
life care and the degree to which their availability will determine
just where a person dies, but are these the only factors that determine
the outcome. As we have also explored, the legal ramifications are
legion.
We have endeavoured to clarify the situation that impinges on the carer
and the psychological and physical demands that end of life care places
upon them. It appears that they may also be in legal jeopardy as well.
It seems that carers are not allowed to make judgements that healthcare
professionals can make. The case of the Johnsons and Mrs B illustrate
the point nicely.
Those who argue against euthanasia, point to the fact that the
practice of palliative care has progressed with both the tools (drugs
etc.) and the techniques in the last decade, to the point where these
dilemmas are becoming less intense (Francke et al 2000). They suggest
that neither carers, or for that matter the patient, will need to be
in a position where they have to make such decisions in the future, as
palliative care will remove the need to suffer pain. This seems to be a
rather shallow argument in the light of our discussions (see above)
relating to the holistic and hospice models of end of life care. The
relief of pain is only one (albeit important) aspect of end of life
care. The frequently unmet psychological and perhaps spiritual needs
are not always addressed by those who see pain relief as all-important.
We ultimately return to the curative vs. carative approach to the
problem.
We have explored opinions and calls for an integrated and seamless
service, but in practical terms, can that actually be achieved? Bearing
in mind the papers and studies that we have reviewed concerning the
patient’s ability to distort the reality, to enter a phase of false
optimism or actual frank denial, if presented with a seamless service
where options of cure were presented with the same emphasis as the
options of care, what if the patient’s mind set was such that they took
the view that they had a serious, but curable problem that was not yet
going to kill them, would any patient actually turn down the
possibility of cure in order to enter a time of reflection and healing
(in the psychological sense) prior to death? From the The study cited
earlier, we see that even though specifically looking for this option,
only one patient from the entire cohort chose not to follow the
treatment option and we are not told why that was.
In conclusion, we have explored many of the areas that impinge on the
factors contributing to the choice of where patients die. The actual
title of this dissertation is “Is there a real choice in where patients
with cancer wish to die or is this a myth?”
Our investigations suggest that the reality is that patient’s can
indeed have the choice as to just where they WISH to die. The sad fact
of the matter is that many other practical considerations generally
overtake them in achieving that wish. In that respect, for the majority
of patients experiencing end of life care in our current society, the
ability to actually achieve their wish of a place to die is indeed a
myth.
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