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68 Chapter 6
to euthanasia I may have used the argument that this is
wrong because killing is wrong. By using the argument of
the wrongness of killing what branch of moral philosophy
or what rule or moral reasoning am I using to back this
stance? Metaethics is describing what we are doing when
we “do ethics” e.g., do the rules we use mean anything? Do
they describe something that is true or is it a social con-
struct? In our rugby example it is pundits talking about
rugby as a wider subject—commentating on movements
within the game and the politics of it. To summarise
Applied Ethics Specific game Specific real world
ethical issue
Moral theory Rules e.g., scrum Specific Moral philosophy
e.g., deontology
Metaethics Pundit’s
discussion
What do we mean by
ethical rules
What Do We Mean by Ethics?
Ethics as a branch of philosophy is not peculiar to medi-
cine itself. Trying to define exactly what ethics is and what
the study of ethics involves can sometimes be quite tricky.
However, as is often the case with most philosophy, going
back to the Greek fathers of the subject can provide us with
guidance. The Greek philosophers (particularly Socrates,
Plato, and Aristotle) defined ethics as an attempt to
describe what the “good life” was and is. Such a life would
encompass not only what a good person is and the good
things that such a person would do, but also what their life
and character should be. Such a good life would be
embodied in a person whose life is enriched and “flourish-
ing.” While a good life might be difficult to talk about in a
multi-cultural environment with many competing ideas of
what the “good” should be—it is not too difficult to see
how this can be translated across to the practice of a pro-
fession. Bioethics (the ethics of health-care practice) is the
discussion and the description of what it means to be a
good health-care professional—be this doctor, nurse,
physio etc. So, this definition of ethics is not merely
describing what good actions are, but rather what an eth-
ical practitioner should be and what ethical practice looks
like. Therefore, bioethics encourages us not just to think of
single health-care practitioners and what their behaviour
and character should be, but also what we expect from
groups of practitioners. In other words, what makes a good
nurse as well as what makes that individual nurse good.
One of the things that can put people off the subject of
ethics are the words and descriptions that are often used.
These can seem confusing and feel arcane—with long dis-
cussions over what the words mean in the first place. As
has already been argued, we are all, to a lesser or greater
degree, amateur ethicists. As people, we frequently have to
weigh outcomes, decide what are right and wrong actions
in our everyday living. What moral philosophies seek to do
is to try and describe how they observe people making
moral decisions and attempt to define them. They are step-
ping back and looking at how we make decisions. They
then define what ought to happen as well as what does hap-
pen. To use technical language, ethics is both descriptive
and prescriptive. A further word that is used when defining
how someone should act is that that we are describing what
“normative” behaviour should be.
I now turn to definitions of what a few of the words used
in bioethics mean and what the various moral philoso-
phers’ stances are. I hope this will provide readers with a
road map, so as you study and read further you have a
clearer understanding of the terminology and technical
language. I hope this will help you to decide what your
own rule book is and how you decide what is right
concerning ethical dilemmas. I will then turn to some of
the issues within applied ethics in palliative and end-of-
life care that are current at the time of writing and I will
use case scenarios to try and illustrate the issues involved.
The Three Main Moral Philosophical
Standpoints
Before you read on it would be useful for you to write
down or think about what your instant response to this
imagined situation would be and why you respond in the
way you do
It maybe that you feel that to tell a lie to this person would
be wrong. After all, your close friend is asking you a direct
question. So, in this circumstance it maybe that you think
that to obey the rule “Never tell a lie” would be appropriate.
The outcomes of what you say (or do) are less important
than obeying this rule. The branch of moral philosophy that
would agree with this approach is called deontology. Those
who hold to deontology would say that in every situation
Case 1
Imagine that you are shopping with a very close friend. The
person that you are with is trying some new clothes on. There
is no possible universe in which what they are wearing looks
good on them and they are asking you directly whether they
look good in it. What do you do?
https://t.me/med1917
Ethics in Palliative Care Practice 69
that obeying the rule, in this case to not lie, is the right thing
to do. The Greek word that deontology is derived from,
deon, is often incorrectly translated as rule. It is probably
more likely to be the Greek word for duty. It is easy to see
how monotheistic religions may find this thinking attrac-
tive, obeying divine rules or commandments—but it is also
possible to have a humanist or atheist deontological world
view. An example of a secular deontologist is Kant. Kant is
very definite in his view that the only thing that we can be
guaranteed about is that actions are wrong in and of them-
selves. He claims we can never be sure of outcomes.
It could be however, that you decided that it was better
to look at what the outcomes of lying might be. It might
be that you felt that telling a lie is not an absolute rule that
one must follow—rather it is the outcome of a lie that
makes it right or wrong. What one must do, by this view-
point, is weigh-up the harms and benefits of a particular
action, and act such that you maximise the beneficial out-
come. Telling a lie to your friend could be outweighed by
not hurting their feelings by being honest. So, telling a lie
may be the right thing to do. This view of looking at moral
situations as being justified by their outcomes is called
consequentialism. The most commonly held consequen-
tialist standpoint is utilitarianism. For the utilitarian, the
outcome that one must aim for is the maximisation of
happiness. So, a utilitarian would say that the right course
of action is one where the maximum amount of happiness
is produced, or the least amount of harm.
2
It might be that you looked at our original case and
were more concerned about the kind of character that you
are and that it might not be actions that define what is
right but the character of the person doing them. So, in
case 1, it could be argued that it is wrong to be the kind of
person who tells a white lie. In this situation the motiva-
tion of lying should be considered in justifying the action.
Does a “virtuous” friend tell lies to another friend who
has asked a direct question expecting honesty? This rather
more nebulous view of looking at morality or defining
goodness is often called virtue theory. People who agree
with virtue theory/virtue ethics would state that people
generally are not all that concerned about absolute actions
but are more bothered about the motivation, personality,
and character of the person that is doing them.
Virtues in these circumstances are not “moral” vir-
tues—but rather the characteristics of a person that makes
them function as a good person—back to our Greek idea
of the good life. Socrates and Plato talk of the Greek tradi-
tional virtues of wisdom, piety, courage, justice, and mod-
eration—although Plato does drop piety as a virtue in his
later writings. Aristotle talks about virtue as being a
“golden mean” between the excess and deficiency (both
described as vices) of a characteristic. So, for example,
Aristotle seeks to define what a good soldier is and in
doing this identifies the virtue of courage as being integral
to this definition. The vice of courage is cowardice—the
deficiency of courage—we would not expect a good sol-
dier to be someone who runs away from a fight. The
excess of courage is foolhardiness—picking a fight for the
sake of it—not knowing when to surrender. Therefore, the
golden mean of courage is avoiding cowardice and fool-
hardiness and finding the mean of these vices. Twentieth
century philosophers (e.g. Foot and McIntyre) have redis-
covered the idea of virtue and taken it from its Greek ori-
gins. They would argue that virtue theory’s emphasis on
character helps to find a way forward between the impasse
of deontologists’ and consequentialists’ argument
regarding rules or outcomes as the right measurement of
morality. They are also argued as being particularly rele-
vant to those roles we term professions. Defining a
professional role requires us to define the virtues which
the role would demand and ensuring that professionals
display those characteristics.
Summary
• Deontology thinks that obeying rules and following
duties is the correct way to behave ethically
•
Utilitarianism states that the “rightness” of actions lies
in the amount of happiness they promote
•
Virtue theory emphasises the role of character in ethical
discourse.
Principlism
Two moral philosophers who wanted to try and create some
middle ground between these various ways of moral theory
created a system of thought called principlism. Beauchamp
2
There are two types of utilitarianism that are put forward—act and rule. Bentham is said to be an act utilitarian—someone who states
that all actions must be weighed by the harm and happiness they produce in determining the right thing to do. Mill is described by some
as saying certain rules (e.g. justice) are good not because they are rules but because of their outcome. One can therefore follow specific
rules and be a utilitarian.
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70 Chapter 6
and Childress
3
suggested that there are four principles
within medical ethics which are a good starting point for
discussing ethical problem relating to a clinical issue. These
would not solve moral problems, rather they aim to give a
starting point for discussion. These four principles are:
a)
Autonomy: looking at and respecting a patient’s ability to
make their own decisions for themselves. It can be taken
that autonomy is synonymous with individuality. But this
stance ignores the fact that we are a community and you
expressing your autonomy may inhibit someone else’s
autonomy. It can also be argued that groups of people
have autonomy e.g. a professional group deciding what
the scope of their practice is. Autonomy therefore is often
a balancing act between these autonomies rather than
automatically following an individuals’ choices per se.
b)
Beneficence: to always act in the patient’s interest—to
do good for the patient.
c) Non-Maleficence: to never do anything that would
cause harm to the patient
d) Justice: a more communitarian view which is trying to
either make sure that everyone has an equal share or
where inequality exists to instigate some measure to try
and rectify this.
Principlism is probably the most widely used and taught
ethical system within Western health care. Sometimes peo-
ple criticise principlism as trying to provide answers where
actually the four principles themselves generate more ques-
tions than they answer. I would argue that the main reason
for the usefulness of principlism is precisely because of that,
that it is an approach that helps to define what the main
questions are that need answering in a particular situation.
Summary
● Principlism advocates 4 “pillars”—autonomy, benefi-
cence, non-maleficence and justice, and involves
applying these pillars to ethical situations.
Consent and Advance Consent
Much that is written with regards to ethics within palliative
care tends to concentrate on “single issue” ethical prob-
lems—is euthanasia right or wrong—do we have to be
always truthful to patients regarding their diagnosis? It
could be argued that there is one overarching or one “meta”
question that encompasses all the ethical issues that arise
in palliative and end-of-life care. I would contend that
much of what is at the heart of such ethical discussions, in
palliative care practice relates to consent from patients and
the limits and abilities of a patient to make consent for
themselves. It is also an issue about which all the various
“tribes” of ethics have something to say.
4
Deontologists would state that respecting the rule/duty
of consent is important, but that other rules and duties may
“trump” it for that individual patient. The utility of consent
and promoting it for the maximum number would be
important for a utilitarian. For a virtue theorist consent
would be valuable as it is what virtuous health-care practi-
tioners promote and the good character of such a practi-
tioner should be one that informs and promotes choice by
the patient.
This is not to state that choice is not a concern of any
health-care practitioner outside of palliative care. Health care,
in whatever context, has consent at its heart. However, the
types of consent that are involved with life limiting illness and
end-of-life care have some distinctions when compared with
that in general health care. We call on patients to make con-
sent regarding their future self and we are often balancing
harms and benefits where cure is not the aim of a procedure.
It also calls into question what the limit of consent is specifi-
cally how much a patient can ask or require of a health-care
practitioner.
Advance Care Planning
3
Principlism is described in the Book Principles of Biomedical Ethics [2]. One of the authors is a utilitarian and the other a
deontologist, People who advocate using principlism use the fact that two philosophers from different philosophical tribes have agreed
on them. They would state that this demonstrates that people with different moral rules can agree on them.
4
There is much that is useful regrading “general” consent contained in the GMC document [3]. These guidelines recommend
partnership between clinician and patient and this is a good model to use irrespective of the context of the consent that is being sought.
Case 2
Jane has a diagnosis of widespread metastatic breast cancer.
She is undergoing palliative chemotherapy which she feels is
important as she wants as much time as possible with her fam-
ily. She knows that her time is short—but she is very clear that
she does not want to die at home. It is important to her that her
children should not associate the family home with her death
and that they should not see their mum there. She wants to
record this wish so she can be taken from her home, preferably
to a hospice when she starts to die.
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Ethics in Palliative Care Practice 71
There is a danger that ACPs can be seen as a way of
discriminating against patients with a palliative diag-
nosis or those who are elderly. One could argue Case 3 is
an example of this happening. It is perfectly reasonable
for a patient who has a palliative diagnosis to be admitted
to hospital as part of their symptom control. Many
patients who have a palliative diagnosis have reversible
symptomatology e.g. pain from spinal cord compression
requiring radiotherapy and admission to hospital in
these circumstances could be appropriate. Of course, all
this is different if the patient themselves is refusing
admission.
One of the other dangers is to imply that patients
cannot change their minds after their ACP has been
written. This is to argue that an ACP discussion is one
event—when as is the case for consent for some medical
procedures,
6
it is ongoing discussion that needs revisited
and “checked” regularly. It could be argued that to try
and make decisions for our future selves is difficult. How
do we know what we will really want in circumstances
that we cannot imagine or have not experienced yet?
However, we ask people to do this all the time. For
example, our children make decisions about GCSE’s and
A levels, decisions based on thoughts regarding future
careers which the young person may find that they do
not want to do in the future. Consenting to an operation
is asking someone to imagine whether the future self
who has an operation is better off than the future self
who does not want it. In other words, making decisions
for our future self is what we do as part of life and part of
health care anyway. In that sense there is nothing “spe-
cial” about ACP. Decision-making is not paralysed
because we might be somebody different later in life in
Consent in the specific area of future planning—the
type of preferences that Jane in our case above wants to
record—has become more discussed and advocated
during the COVID-19 pandemic. Advance care
planning (ACP) is a system which, put simply is asking
what patients’ future preferences for treatment and care
are and documenting them. This can be used if the
patient later becomes unable to tell their health-care
practitioner what they are—obviously if a patient is able
to communicate an ACP is not needed. For the pur-
poses of this section, ACP is trying to define what treat-
ments a patient would like and what treatments they
would not want to have in the future. Positive wishes
are those I would want given to me (e.g. I would like
antibiotics) and negative wishes are those I would not
like (e.g. I would not like to go to hospital). Within a
legal framework, due to legal precedent, we have more
ability to have our negative wishes (not to be treated)
respected than to be able to insist on positive treat-
ments (what I would want). This is based on the premise
that non-consensual treatment i.e. not having consent
is deemed to be assault. Where this assault leads to
harm the legal wrong is termed “battery.” No such
defined legal category exists for not respecting future
positive wishes. In other words—just because I want
something does not make a practitioner duty bound, by
law, to respect this.
5
One question that is raised is what the “good” of ACP is—
given that the circumstances under which an ACP is brought
into force are generally when the patient is unaware. It begs
the question how a patient can benefit from something that
they do not know has been respected. Champions of ACP
would give a form of a deontological argument. They would
argue that involving the patient in discussions of future care
plans are a good in themselves—irrespective of outcome or
a patient’s knowledge of them being followed. The “good” of
ACP for the patient lies in the conversation itself. With
regards to respecting future wishes the family and health-
care practitioners are the beneficiaries, not the patient. The
family and health-care team know they are doing what the
patient would ask of them if they were able to do so.
Therefore, ACPs are good both in themselves and from their
outcomes. That is not to say that ACPs are without their
pitfalls.
5
For more details on positive and negative freedoms and rights in law look at Isaiah Berlin—political philosopher—who first coined
this term. A summary of his argument can be found in Positive and Negative Liberty [4].
6
The dialogue leading to a decision continued 1—GMC (gmc-uk.org) [3]—useful guidance concerning “ongoing consent”.
Case 3
Samyal is a foundation doctor. He has been told by his consul-
tant that he needs to fill in a Treatment Escalation Plan form
for Jack, a patient who has metastatic prostate carcinoma.
Samyal has been told that under no circumstances must Jack
be admitted into hospital. Jack initially agrees but then asks if
it means he can have no antibiotics intravenously for the recur-
rent chest infections that he gets.
https://t.me/med1917
72 Chapter 6
GMC guidance describes two types of circumstance where
a Do Not Cardio-Pulmonary Resuscitate Order
(DNACPR) is written—one where the patient refuses con-
sent for this to happen in the future, the other where the
medical team feel that the treatment will not work and
would cause significant harm to the patient if conducted.
7
In this sense there is nothing “special” about such orders.
All treatments involve patients making decisions of
whether they consent to them and for a medical team
weighing harms and benefits of treatments. It is important
to note that DNACPR orders only come into play when
the patient dies. There is therefore nothing active that the
medical team has done to bring about the death of the
patient—by not resuscitating they are either respecting a
patients’ wishes or are not attempting a treatment which
will be unsuccessful or both. Despite there being much
helpful guidance on how to conduct DNACPR discus-
sions—situations like Case 4 can often arise.
8
The medical
teams do not want to provide a treatment which the
patient wants. Some of the reasons that this type of impasse
can arise are:
a) A patient has an unrealistic expectation of the suc-
cess of CPR. In circumstances where a patient has a
sudden arrest with no other underlying disease CPR has
a high success rate. The type of patients seen in palliative
care, where DNACPR orders are written, have advanced
disease and a poor prognosis. Resuscitation in these cir-
cumstances is unlikely to be successful. It is often the
case that patients feel that CPR is equally successful in all
circumstances. This lack of knowledge may be why there
was a difference in attitude between Mrs Davies and
Helen.
b) The way the question is asked gives a false expectation
of success. If a patient is asked if they would like to be
resuscitated it may sound as if the medical team are asking
for withdrawal of a treatment that may work. If the
question is more accurate and asks if the patient wants to
be spared having either an unsuccessful treatment, a
treatment that may only cause them harm or if they want
to be kept at home, then a different response is often given
by the patient. The health-care team need to be clear that
they are describing what the benefits of treatment are. In
end-of-life care with patients who have advanced disease
there are arguably no benefits. Patients are not often clear
about this because of the form of words that health-care
practitioners use to inform them.
Case 4
Helen has just had a conversation with her patient, Mrs Davies,
which did not go well. Mrs Davies has widespread metastatic
breast cancer with bone and brain metastases. The medical team
feels that when Mrs Davies stops breathing or when her heart
stops, trying to resuscitate her would be unsuccessful and just
cause her harm. They therefore want to put a do-not-resuscitate
order in place. Helen thought that Mrs Davies understood that
resuscitating her with her advanced disease would be unsuccess-
ful. When Helen asked Mrs Davies if she wanted to be resusci-
tated Helen was surprised that her patient said yes. Helen does
not know what to do—as she and her medical team are con-
vinced that not resuscitating is not in Mrs Davies’ best interest.
7
GMC guidance [5].
8
The National Resuscitation Council provide a lot of helpful guidance specifically in filling in their recommended RESPECT form but
also in having DNACPR discussions more widely [6].
those, yet unknown, circumstances. Decisions are
reached with the knowledge and opinions that we have
regarding ourselves as we are at this moment.
Therefore the “good” of an advance care plan is having the
discussion with the patient in the first place and seeking their
consent. Just as we routinely check that patients still feel the
same about receiving treatments such as chemotherapy, so
too patients who have an ACP with wishes recorded have not
written something in stone. ACP should not be a single epi-
sode of consent, but an ongoing discussion about what the
patient’s priorities are and whether these have changed.
People are able and indeed do change their minds about their
negative and positive treatment wishes as their circumstances
change. I line with any “tool”—there is potential for misuse or
misapplication. This is not the fault of the tool per se—more
the fault of the practitioner that is using and applying it.
Summary
• ACPs are good to the patient by virtue of having the
conversation with the patient in the first place.
•
Respecting a patient’s preferences are good to the rela-
tives, carers, and health-care professionals of that patient.
•
ACPs are an ongoing discussion and should not be used
as a “blanket” way of barring certain groups from hospital
admission.
Decisions about Cardio-pulmonary
Resuscitation
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Ethics in Palliative Care Practice 73
The moral philosopher Mill in his book On Liberty
which informs the ethical foundation of a lot of democratic
Western political theory and thought, insists that govern-
ments cannot intervene in anything that a person validly
consents to
10—
even if the person is consenting to something
that harms him or her. Some of this argument contributed
to a change in legal and societal attitude towards harm of
suicide. Suicide, which previously was classed as illegal is
now decriminalised in the UK and many countries in the
world—hence people are no longer prosecuted for trying
to commit suicide. Assisting someone to commit suicide is
still illegal and it is this part of the law that proponents of
assisted dying/suicide seek to get changed. But why assisted
suicide and not looking to legalise euthanasia itself?
Some would argue that there is a distinction between
assisting and doing. Doing would be that we “actively”
cause the person’s death while assisting is helping create the
circumstances under which someone else can do it them-
selves. So, “doing” would be me pushing you off a cliff,
“assisting” would be me driving you up to a cliff from which
you jump yourself. Or to use the clinical situation directly,
assisting would be me driving you to Dignitas in Switzerland
and doing would be me actively injecting you with a lethal
injection of drug intended to end someone’s life.
11
The UK and many other countries draw a legal line
regarding suicide in that it is illegal for someone else to
“assist” a person to kill themselves. For example, if Dr Todd
looks up the website of Dignitas for John this could be
regarded by English law as assisting. This is particularly
c) The conversation is had as a consent discussion rather
than as an information giving discussion. Some of this
confusion of the type of “informing” conversation that is
required comes from a misunderstanding of the legal case
known as the Tracey judgement.
9
The family of Mrs Tracey
brought a case against a Cambridge hospital as the family felt
that the medical team should have discussed the DNACPR
order they put on their mother, who was suffering from both
end stage lung cancer and the effects of a road traffic
accident. The judgement found that the ITU team were not
wrong to have made a do not resuscitate order on the lady,
Mrs Tracey; they were wrong not to have told her. This was
not a conversation asking for the patient’s consent—rather a
discussion telling her that this decision was being reached.
Distress of the patient was not enough to not discuss with
her as having difficult/distressing conversations are part of
health-care practice. Patients do have the right to seek a sec-
ond opinion and the decision should be reached by a Multi-
Disciplinary Team. If there is still disagreement, there is
helpful advice provided further by the GMC in the
“treatment at the end-of-life booklet” paragraph 47–49 [5].
Summary
• CPR in patients with advance disease in the palliative/
end-of-life stage of their disease is mostly unsuccessful.
•
A DNACPR discussion should be had with the patient if
it would not cause them harm.
•
DNACPR is a medical decision—but this should be
made by an MDT and a patient can have access to a second
opinion.
Assisted Dying, Suicide, and Euthanasia
In the previous parts of the chapter, it has been presumed
that consent of a patient is an inherent good. Assisted
dying or assisted suicide (AS) directly pose two ethical
questions which challenge this stance on consent: whether
patients can validly consent to something that is meant to
harm them and whether there is a limit to what a patient
can ask of a health-care professional.
9
Legal reference: Tracey v Cambridge Uni Hospital NHS Foundation Trust & Ors [2014] EWCA Civ 822 [7].
10
The only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to
prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. He cannot rightfully be compelled to do or
forbear because it will be better for him to do so, because it will make him happier, because, in the opinions of others, to do so would be
wise, or even right JS Mill [8].
11
APM Physician Assisted Dying Web Materials—APM Online. Free to non-members, a useful resource with multiple articles
discussing subject of assisted suicide [9].
Case 5
Dr Todd is a GP who seeing her last patient of the day. John
has motor neurone disease and seemed to be doing well. John
seems in a lot of distress at this consultation and Dr Todd
wants to know why this is so. John tells her that his finding life
a burden, that he feels he is causing distress to his family and
he wants to go to Dignitas in Switzerland, an organisation
which provides assisted dying to certain patients. John says that
his computer has broken down and wants Dr Todd to look up
the details on her computer. Dr Todd is concerned—if she does
this could this be viewed as assisting John’s suicide?
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74 Chapter 6
under which it can occur—it can only apply to the actual
act of doing a termination. One case relates to midwives
who were responsible for running a ward where termina-
tions occurred
12
and another to a medical secretary who
refused to type a referral letter for a termination.
13
It has
now been clarified that the only thing that a health-care
practitioner can object to is being actively involved in a
procedure. As I have argued, the distinction between
assisted suicide and euthanasia rests on claiming that has
no “doing.” If this is the case, it can be argued that there is
nothing to object to in assisted suicide
14
and therefore
conscientious objection cannot be used by health-care
practitioners with regards to assisted suicide.
The beginning of the chapter looked at principlism and
specifically the duty of health-care professional to not
cause harm to their patients. To assist in ending someone’s
life, to many in the specialty feel like a line that cannot be
crossed. It is an interesting conundrum for health-care
professionals who are both members of a society and mem-
bers of a professional body. It may be that as member of
society they feel that assisted suicide should be legal—but
do not feel that their profession should administer it. Some
may feel that it is wrong for society and profession—others
right in both areas. The fact that professionals have foot in
two camps often makes their response more complex.
Summary
• The debate around assisted suicide will continue.
• The important factors while reading around this subject
are to clarify what the words used mean i.e., what do assisted
dying and euthanasia involve and are they distinct.
• Also, each of us need to decide what questions and
answers go to make up our response to the debate? For
example, should health-care professionals ever be involved
in a procedure meant to harm a patient, how much harm
can a patient consent to?
Conclusion
I hope that this brief journey through some of the princi-
ples of moral philosophy and their application in case sce-
narios has pointed you in the “right” direction to help you
true for health-care practitioners—relatives who assist are
judged on a case-by-case basis.
This is not to say that there are no critics of the claimed
ethical difference between assisting and doing. Some of these
arguments are similar in nature to the alleged distinction
between withdrawing and withholding. It is perceived that
there is a difference between actively withdrawing treatment
and passively withholding. However, in both situations an
active decision is reached to do, or not do an action—there-
fore many contend there is no moral difference between the
two. Some would say that this is similar to assisted dying and
euthanasia—in both an active decision is involved in doing
an action—the type of action is, it is argued by some, irrele-
vant. Also, in both assisted dying and euthanasia, the inten-
tion is to end the patient’s life—i.e. the outcome is the same
and another person is still involved in bringing this about.
Those who argue this claim there is therefore no moral
difference between assisted dying and euthanasia.
The binary distinction between assisting and doing could
also be accused of falling apart when it is a health-care
professional who is involved, and it becomes a medically
assisted suicide. If I am providing you with a lethal cocktail
of medication, which you drink, is there still a definitive dis-
tinction of doing vs assisting? Proponents would still say
“yes” and that there is a definite moral distinction between
medical assisted suicide and euthanasia. Others would
counter this argument by pointing out that if a clinician has
prescribed something, then they must have some responsi-
bility for the outcomes. For instance, if a patient takes an
antibiotic, they are known to be allergic to, that I have pre-
scribed I would still have responsibility for the allergic reac-
tion even though it is the patient who took the medication.
Some readers of this chapter may already be in a country
where medically assisted suicide is legal and that they are
required to prescribe and administer lethal medications.
This circumstance poses the question of whether
health=care professionals are permitted to withdraw con-
sent for procedures where there may be moral difficulties
for them personally in taking part in them. Conscientious
objection by health-care professionals is accepted for inter-
ventions such as termination of pregnancy, and it is argued
could be extended to include involvement in assisted
suicide. Recent case law in the UK has narrowed the scope
of what such objection might be, objection cannot be just
supporting terminations and providing the circumstances
12
Legal reference: Doogan & Anor v NHS Greater Glasgow & Clyde Health Board [2013] ScotCS CSIH 36 [10].
13
Legal reference: Janaway v Salford Health Authority (1989) AC 537 [11].
14
For a fuller discussion of this argument look at the paper: Willis D and George R Conscientious Objection and Physician Assisted
Suicide [12].
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Ethics in Palliative Care Practice 75
10. Doogan & Anor v NHS Greater Glasgow & Clyde Health
Board. (2013). ScotCS CSIH 36.
11. Janaway v Salford Health Authority. (1989). AC 537.
12.
Willis, D. and George, R. (2018). Conscientious objection and
physician assisted suicide: a viable option in the UK? BMJ
Support Palliat Care 9 (4): 464–467.
Useful Sources
General Medical Council—Ethical guidance for doctors—GMC
(gmc-uk.org)
Nursing Council—The Code: Professional standards of practice
and behaviour for nurses, midwives and nursing associates
(nmc.org.uk).
Philosophy bites http://philosophybites.com—a useful online
collection of interviews with philosophers, free to access and a
lot of ethical debate and moral philosophy covered in the site.
Stanford Encyclopaedia of Philosophy a useful online resource
peer reviewed, regularly updated and thorough articles.
Useful texts
Sandel M Justice What’s the Right Thing to Do? Penguin Books
2008.
Sandel is a political philosopher so this is not a bioethics book.
However, he has the best and clearest description of Kant I
have found and is very readable. There is a lot of moral
philosophy, but little medical application in it.
Glover J ‘Causing Death and Saving Lives’ Penguin Books 1990.
I do not agree with a lot of his conclusions—but well written and
well argued with regards to assisting suicide, euthanasia, and
killing.
JS Mill Utilitarianism Oxford University Press.
A collection of his original articles (he published these in a
newspaper as separate articles).
Crisp R Routledge Philosophy Guide to Mill on Utilitarianism 1997.
Guide to Mill—advanced for this chapter but interestingly written.
Foot P Natural Goodness Clarenden Press 2003.
Modern take on virtue theory—Foot is the easiest to read of the
modern virtue theorists.
Plato The Republic Penguin Classics.
Easier to read then Aristotle—effectively a play script. Contains
the seeds of the ideas of virtue theory.
Aristotle Nicomachean Ethics Oxfords Worlds Classics.
Listed for completeness—hard to read but worth trying!
understand more about this area and as the quote at the
beginning of the chapter stated—made you think. Socrates,
one of the founding fathers of philosophy, felt that writing
anything down was counterproductive. For him to dis-
cover what the good life involved, was an active process of
going to the marketplace and talking and asking questions
to discover the answer to this. Ethics was, and is, a prac-
tical, doing subject as well as a cerebral exercise. I hope that
as practitioners who serve patients who pose complex eth-
ical dilemmas for us, we continue to discuss and hammer
out what a “good” palliative care practitioner should be.
Acknowledgements
This chapter is dedicated to the memory of the Rev
Margaret Woodlock-Smith—without whom there would
have been no Prof Willis. With thanks to Prof Rob George
for helpful comments on an early draft of the chapter.
References
1. Fisher, A. (2011). Metaethics: An Introduction. Routledge.
2. Beauchamp, T.L. and Childress, J.F. (1994). Principles of
Biomedical Ethics, 4e. Oxford University Press.
3. General Medical Council. Decision making and consent—
the dialogue leading to a decision continued. https://www.
gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/
decision-making-and-consent/the-dialogue-leading-to-a-
decision-continued-1 (accessed 14 January 2021).
4.
Stanford Encyclopedia of Philosophy. Positive and negative
liberty. https://plato.stanford.edu/entries/liberty-positive-
negative (accessed 14 January 2021).
5. General Medical Council. Treatment and care towards the
end-of-life.
https://www.gmc-uk.org/-/media/documents/treat-
ment-and-care-towards-the-end-of-life—english-1015_pdf-
48902105.pdf (accessed 21 January 2021).
6. Resuscitation Council UK. ReSPECT Resources. https://
www.resus.org.uk/respect/respect-resources (accessed 14
January 2021).
7. Tracey v Cambridge Uni Hospital NHS Foundation Trust &
Ors. (2014). EWCA Civ 822.
8. Mill, J.S. (1982). On Liberty. Penguin Classics.
9. Association for Palliative Medicine. APM physician assisted
dying web materials. https://apmonline.org/news-events/
apm-physician-assisted-dying-web-materials (accessed 21
January 2021).
https://t.me/med1917
Handbook of Palliative Care, Fourth Edition. Edited by Richard Kitchen, Christina Faull, Sarah Russell and Jo Wilson.
© 2024 John Wiley & Sons Ltd. Published 2024 by John Wiley & Sons Ltd.
76
7
Why Communicate Well?
Communicating well is an essential part of palliative, end-
of-life and patient-centred care [2]. While people may feel
uncomfortable talking about their end-of-life wishes, not
talking about them denies them the opportunity to fully
participate in discussions and decisions about their current
and future care [3]. Each person should be seen as an
individual (Figure 1). People want the opportunity to
engage in conversations about their future death and the
care that they would want [4].
Communicating well has benefits [6], and effective com-
munication is one of the conditions for a good death [7].
Good communication engenders meaningful and trusting
relationships between healthcare professionals and patients,
as well as increasing patient satisfaction, understanding,
adherence, recall, and health outcomes [2, 8, 9]. Effective
communication facilitates accurate identification of prob-
lems resulting in better symptom control, treatment
assessment, physical, functional, psychological wellbeing,
and functioning [6, 9]. Furthermore, advance care planning
is more effective with accompanying communication skills
and trust building processes [10]. Honest, clear sensitive
conversations do not necessarily remove hope or increase
distress [10], as good communication can improve the ability
Conversations and Communication
Sarah Russell
To listen and to see me as a person, not just a name
on a piece of paper
[1,
p. 159]
Introduction
Conversations matter in palliative and end-of-life care.
From the diagnosis of a life-limiting illness to the recogni-
tion that death is approaching, people face a myriad of dis-
cussions with health and social care providers, families,
and friends. Some conversations are weighing up the ben-
efits, risks, and consequences of investigations and
treatment; others concerned with withdrawing and
withholding treatment; or about preferred place of care
when they are dying. Conversations can include commu-
nicating uncertainty as well as recognising physical deteri-
oration and functional decline. Some discussions revolve
around the inevitability of death and what a persons’ future
end-of-life choices and preferences are (advance care
planning). Discussions may take place with families when
the person is too unwell to speak, and/or when death is
approaching. Conversations can be an expression (a safe
space to say or hear unsafe things) of the emotional,
psychological, social, and spiritual impact of living with
the knowledge of certain death at an uncertain time in the
future.
This chapter explores the principles, benefits, and chal-
lenges of good communication in palliative and end-of-life
care. The aim is not to provide readers with a “one size fits
all” model for conversations, but rather why good commu-
nication matters and examples of useful resources and
models.
I and the people important to me, have opportunities to have
honest, informed, and timely conversations and to know that
I might die soon. I am asked what matters most to me. Those
who care for me know that and work with me to do what’s
possible [5, p. 18]
Figure 1 Ambition one: each person is seen as an individual.
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Conversations and Communication 77
silence, can be responsible for communicating attitudes
and emotions [18], reinforce or contradict verbal com-
ments altering the meaning of a message actions and out-
comes [19]. NVC includes kinesics (gestures, facial
expressions, and gaze patterns), proxemics (body posture,
position, territoriality, personal space), and touch [20].
Principles and Benefits of Good
Communication
Considering how we carry out conversations, and what
those discussions contain, enables better person centred and
rewarding discussions for patients, families, and clinicians.
While there is multiplicity of communication definitions
and inconsistency as to what exactly constitutes a communi-
cation skill [10], communication can be described as the
efficient transmission of information, including verbal com-
munication, such as speech units and listening strategies, and
non-verbal communication, such as gestures and expres-
sions, eye contact and body language. [17, p. 1]
However, communication is more than just the transmis-
sion of information. Back [9] points out that palliative care
communication is
a two-way, relational process that is influenced by context,
culture, words, and gestures, and it is one of the most impor-
tant ways that clinicians influence the quality of medical care
that patients and their families receive. [9, p. 866]
to cope with prognosis, prepare and plan for death [1, 11].
Disclosure of psychological concerns is likely to be improved
with good communication resulting in better emotional
health, resolution of symptoms and pain control, and a ben-
eficial effect on patient outcomes and satisfaction [12].
There is a need to improve communication [13], with
persistent evidence that poor communication is a regular
source of patient, family, and clinicians’ dissatisfaction
about end-of-life care, particularly in hospitals [14, 15].
Poor communication leads to a failure from health-care
practitioners to recognise or agree to patients’ concerns,
underrate distress, miss opportunities to improve patient
self-management, increase psychological morbidity, and
underestimate information needs [8]. Problematic com-
munication can contribute to increased health-care
professional stress, high malpractice claims, emotional
burn out, low personal accomplishment, lack of job satis-
faction and high psychological morbidity [16].
Blocks and Barriers to Communication
Good communication is hampered by blocks and barriers
to discussions. Blocks to communication include verbal
and non-verbal behaviours that inhibit conversations.
Barriers to communication can include individual and
organisational reasons why practitioners do not communi-
cate well (Figure 2). Verbal communication is concerned
with speech units and listening strategies [17]. Non-verbal
communication (NVC) is a communication behaviour
without linguistic content [18]. NVC is present even in
Figure 2 Examples of blocks and barriers to communication [1, 21–23].
Blocking Behaviours
(Verbal and non-verbal behaviours)
Clinician-led conversations rather than patient led, lack of eye
contact, unfriendly or inappropriate body language, missing or
avoiding cues in conversations, interruptions and interrupting,
noise, not considering the cultural, language, literacy, or
communication needs of the person, lack of pauses or silences,
premature or false reassurance. Jollying along, inappropriate use
of humour, not attending to the way a person expresses
themselves.
Multiple questions, closed questions, leading questions, focussing
on only one aspect of the conversation (e.g. just physical),
switching topic, focus, or person. Use of jargon, not paying
attention to the emotional, psychological, or spiritual aspects, not
exploring the person’s goals, concerns, hopes, fears, and
expectations. Appearing judgemental, defensive, unconcerned.
Not agreeing the focus of the conversation and summarising at
the end.
Barriers to Communication
(Individual, Organisational, Societal)
• Lack of skills, competence, knowledge, confidence in communication skills
• Fear of being blamed, taking away hope or eliciting a reaction that one is not sure how to respond to, not knowing what to say.
• Expressing own emotions, thoughts, and awareness of death
• The work environment not enabling conversations (e.g. privacy, noise, capacity, and time challenges)
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