Introduction
Proper medical treatment is routinely defined, in law and in
practice, as requiring the consent of the patient. Patients with disorders of
consciousness (long-term ‘coma’) are unable to give or withhold
consent because they are completely unconscious (‘vegetative’) or
have only fleeting and occasional moments of consciousness (‘minimally
conscious’). They are completely (or largely) unaware of themselves and
their environment.1
They cannot understand the situation they are in or the treatments on offer; they
cannot retain information relevant to a decision to accept or to refuse a particular
medical treatment, nor can they weigh up the pros and cons of any
treatment.2 In
England and Wales these patients, like others who lack the capacity to make some or
all decisions because of learning disabilities or dementia, fall under the remit of
section 5 of the Mental Capacity Act 2005, which is designed to ensure that proper
medical treatment can be provided to people who lack the capacity to consent to it
without putting doctors at risk of criminal prosecution.
The initial impetus for the 2005 Act is usually traced to the
decision in F v West Berkshire,3 commonly identified as ‘a
turning point in English medical law’.4 The House of Lords was asked to
determine the legality of sterilising a 36-year-old woman with learning disabilities
who was deemed incapable of giving consent for the surgery. They found that nobody,
including next of kin and the courts,5 had the legal power to consent to medical treatment on
behalf of another adult. Any doctor who operated would do so without consent and,
hence, would prima facie be guilty of offences of battery and/or trespass against
the person. Both F’s mother and her professional carers wanted to protect F
against pregnancy, which, according to psychiatric evidence, would be
‘disastrous’ for her mental health,6 but F’s access to the service
they believed she needed was impeded by her inability to consent and the inability
for anyone to consent on her behalf. The House of Lords held that unless some
solution could be found, then not just sterilisation but any
medical treatment and, indeed, any day-to-day care (for example, ‘dressing,
feeding and so on’7) that involved touching a patient without their capacitous
consent risked liability for tortious or criminal offences.8 The remedy fashioned in F v
West Berkshire was that their Lordships, while acknowledging that they
could not consent to treatment on F’s behalf, nonetheless granted the
declaration that surgery would not be unlawful. They did so by invoking the
‘doctrine of necessity’,9 holding that surgery was
‘necessary’ because it was in the patient’s ‘best
interests’ as defined by the Bolam test.10
Although providing a stopgap solution for this particular case,
F v West Berkshire exposed a serious lacuna in the common law
and the lack of any comprehensive framework to deal with it. Consequently, the Lord
Chancellor asked the Law Commission to carry out a consultation exercise on
decision-making for incapacitous adults, resulting in a series of
publications11
that culminated in the final report (and draft Bill) in 1995 and eventually the
Mental Capacity Act 2005. The Act provides the legislative framework in England and
Wales for determining capacity, appointing decision-makers, and establishing the
basis on which decisions regarding those who lack capacity should be made:
‘best interests’. For people with disorders of consciousness then,
best interests supplants consent as a key criterion on the basis of which an
otherwise tortious or criminal act against the person becomes an appropriate and
legitimate medical intervention.12
People with disorders of consciousness typically receive a wide
range of different medical treatments from the moment of the injury onwards. The
vast majority of these treatments are now commonplace and well-established
treatments for patients generally (for example, ventilators and feeding tubes),
rather than newer and more controversial treatments discussed elsewhere in this
collection. The controversy, if there is one, lies only in the application of these
life-prolonging medical treatments to this particular group of
patients rather than involving a controversy about the treatments per se. The
question that generates fierce debate is should we be prolonging, for years or even
decades, the lives of people who have little or no consciousness and who are highly
unlikely ever to regain it? This is a question that is addressed, and evaded, by law
and social policy, by media coverage, by professional codes of practice, by
practitioners, and by family members.
For treatment of an unconscious patient to be lawful (at least
after the emergency stage), each treatment should be delivered only if a decision
has been made (in accordance with the guidelines laid out in the 2005 Act and its
associated Code of Practice) that it is in the patient’s best interests to
receive it. Best interests is not defined in the Act, but a non-exhaustive checklist
(section 4) requires the decision-maker to ‘consider all the relevant
circumstances’ (section 4(2)), including, in addition to clinical concerns,
the person’s past and present wishes, feelings, beliefs, values, and
‘any other factors he would be likely to consider if he were able to do
so’ (section 4(6)). Alongside this, there is a requirement for the
decision-maker to consult widely to discover what these wishes, feelings, beliefs,
and so on are (section 4(7)), and the need for such consultation is also highlighted
in professional guidelines.13
Consultation with those who knew the patient before they were
rendered unable to speak for themselves is crucial for best interests
decision-making as a route to try to access what the patient might have wanted, and
recent case law has emphasised that:
[I]nsofar as it is possible to ascertain the
patient’s wishes and feelings, his beliefs and values or the things
which were important to him, it is those which should be taken into account
because they are a component in making the choice which is right for him as
an individual human being.14
However, as the government acknowledges, the 2005 Act has
‘suffered from a lack of awareness and a lack of understanding’ and
‘[t]oo many people who may lack capacity may be missing out on the legal
rights that the [Mental Capacity Act] gives them’.15 Our research regarding people in
chronic disorders of consciousness16 suggests that they miss out on the legal right (under
section 4(6) of the Act) to have their values, wishes, and beliefs represented in
decision-making about their medical treatments because family members are frequently
not consulted, as they normally should be (under section 4(7)) about what those
values wishes and beliefs were. One reason for this is, undoubtedly, because the
patient’s own (presumed or reported) views are not determinative of
treatment (as they are in some US jurisdictions which rely on ‘substituted
judgement’), but are subsumed by the broader category of best interests as a
criterion for legitimate treatment.17
This chapter is based on interviews with 65 family members of
people with chronic disorders of consciousness (such as in vegetative or minimally
conscious states), and explores how people understand proper medical treatment in
this context. In-depth narrative interviews (on average around three hours in
duration) were carried out by one or the other of the two co-authors, and included
questions about how medical decisions were made, who made them, the process of
decision-making, and whether the interviewee considered particular treatments to be
in the patient’s best interests, as well as their view about whether or not
the patient would have wanted them.18 Here we present family accounts in relation to emergency
treatments, life-prolonging but non-restorative treatments, and the special case of
clinically assisted nutrition and hydration. We show that there was a diversity of
views as to what constitutes appropriate or proper medical treatment for these
profoundly brain-injured patients, but that, for most of them, the patients’
own views (as families understood them) were crucially important. We set these
family accounts in the context of contemporary law and medical practice relating to
the treatment of people in chronic disorders of consciousness which (at least in
theory) uses best interests, rather than the patient’s reported views, as
the criterion for determining treatment options.
Emergency treatments
Prolonged disorders of consciousness are caused by severe brain
damage in combination with subsequent medical interventions that prevent the person
from dying as a result of that damage. Brain damage is the result of traumatic
injury (typically a road traffic accident, sporting injury, or assault), anoxic
injury (loss of oxygen to the brain such as is caused by a stroke, cardiac arrest,
or near-drowning), or brain disease (for example, viral encephalitis). In the
emergency phase, the hours and days after the precipitating event when death is a
likely outcome of non-treatment, patients are likely to receive at least some of the
following treatments: cardio-pulmonary resuscitation (CPR), tracheotomy, mechanical
ventilation, clinically-delivered nutrition and hydration, a brain shunt, and
surgery to remove blood clots in the brain and/or a decompressive craniectomy
(removal of part of the skull to relieve pressure on a swelling brain).
Legally, some emergency interventions without consent can be
justified under the doctrine of necessity; that is, in the absence of any
information that the patient would object to treatment, it is considered that
doctors who carry out interventions in order to save life should not have criminal
or civil liability imposed upon them because the good effect they are seeking to
bring about ‘outweighs the value of adhering strictly to the
law’.19 The extent and severity of a person’s brain damage is
very often not apparent at the point of emergency intervention, and when a patient
ends up in a permanent disorder of consciousness this usually could not have been
accurately predicted at the point of the initial medical intervention. Indeed, if a
clinician had known this would be the outcome she might have deemed intervention
futile in the first place. Intensivists and neurosurgeons intervening at this stage
may have different clinical judgements about the likely outcome, and also different
attitudes towards what risks should be taken of a poor outcome balanced against the
chances of meaningful recovery. Some clinicians may judge intervention to be
justified, while others are increasingly concerned at the future harm their
interventions can cause, which leads them to become more conservative in their
practice.20
How, then, against this background, do families talk about what
is proper treatment? In our research, many family members accepted that, initially,
medical treatments were justified, ‘It’s all about keeping someone
alive … and you do whatever has to be done’ (Kate). But, in
retrospect, most expressed some concern about the decision to intervene to keep the
patient alive, often based on the assumption that medical professionals must have
known (or should have known) what the eventual outcome would be. Belinda, whose son
was in a vegetative state eight months after being assaulted, describes her initial
belief (reinforced by medical professionals) that her son ‘was going to be
okay’. It was this belief that, for her, justified doing surgeries:
They took him right up for his first operation on his
brain. The right side of his head was completely caved in and they
haven’t rebuilt it. Then he had to have another operation, swelling
on the other side of the brain. They were very good there but they still
assured us [he] was going to be okay. We knew he might have some disability
like maybe a speech thing, or maybe not being able to walk straight off, you
know the normal things that you’d think of … We really,
really thought that he would come out of it.
Proper medical treatment in the early stages meant, for most
family members, whatever doctors said it was. This is a position they have since
re-evaluated. In retrospect, many thought they were too ‘innocent’,
or that doctors ‘never told us’ important information:
When we started this, I was such an innocent and if
somebody had said to me ‘Right, do we operate or don’t we?
Do we put him into intensive care or don’t we?’ … I
wouldn’t have actually known. I was very much in the hands of the
professionals. (Dawn)
We can’t help him. We
can’t treat him. We can’t look after him. So we’re
handing him over to somebody who has the skills, the knowledge, the
experience, to take him through this stage and bring him out the other side
and go, ‘There we are. There’s Patrick back!’ They
never told us they couldn’t bring Patrick back. (Thomas)
Tania, interviewed jointly with her husband, Ian, describes how
two different surgeons expressed contrasting views about the proper medical
treatment of her son Charles:
We were actually sitting up to the early hours,
planning Charles’s funeral. We went back the next day, we saw the
other surgeon, with the optimistic air, and
he didn’t mention anything about us saying
goodbye to Charles. It was a completely different track. He
started talking about fitting a tracheostomy. And we were absolutely
staggered … And so we’d got a complete
roller coaster of you know, pretty much ‘say
goodbye to Charles, go home, come back the next day’, and we came
back the next day I suppose expecting to be asked about
having the life machine turned off. But we weren’t.
It was this other man wasn’t it, and he uhm
(Ian interjects: gave us a bit of hope) Yeah! And he
just said you know, ‘he’s young ’,
and he just had this feeling … And you want
everything to be okay. You want to believe the good things,
and we didn’t want to lose Charles, we were in
total shock, so we agreed to the decision to have the trachy fitted
… Would that I hadn’t given permission to
do the surgery. Would that they hadn’t got to Charlie in time to
resuscitate him – knowing now what I didn’t
know then.
Only a few families considered, at the time, that
life-prolonging medical treatments in the early days or weeks might
not be appropriate, and in every case family members said that
this was because they knew that life with profound brain injuries (whatever the
eventual diagnosis/prognosis) was not something the patient would have wanted, and
that the patient would not have wanted to take the risk of such an outcome. For
these family members the doctrine of necessity that would otherwise have justified
emergency treatment to save life, was trumped by their belief that the patient
herself would have refused treatment under these circumstances:
They [other family members] said that this is a woman
who loved country life, loved family, very, very active, don’t
operate on her if she is not going to have a quality of life that she
– you know, if she’s not going – if she’s
going to be very, very profoundly brain damaged … Exactly as she is
now, we didn’t want – because we knew that she
wouldn’t have wanted that at all. And they continued operating
another two or three times to take blood clots. I think she had a massive
swelling and they were taking blood clots out … I don’t know
why they went on operating on her, knowing how profound her brain damage
was, why they didn’t just let her go, why they didn’t just
stop. (Diana)
In sum, in the immediate aftermath of the emergency,
life-prolonging treatment is often initiated and continued in order to keep people
alive and prevent further damage occurring, so that once stabilized they can be
properly assessed. For many people this is proper treatment, and many family members
we interviewed believed that their relatives would have been willing to receive
emergency treatments in such circumstances. But a few reported that their relative
would never want to run even a small risk of ending up in such a condition and would
want to refuse treatment early on.
It was also striking in our research that reporting on their
own wishes, as opposed to what they believed their injured
relatives’ wishes would have been at the time of their injury, many
interviewees had come to narrow their definition of proper medical treatment for
themselves. Some family members, including those who supported or fought for
treatments to keep their relative alive, had themselves made advance decisions
refusing treatment in emergency situations like these,21 ‘I don’t want
anything if my brain is damaged in any way. I’m really quite strict about
it. I’m not that scared about death’ (Daisy). For Daisy, and others
like her, the only proper treatment after brain injury is palliative care permitting
death.22
Life-prolonging but non-restorative treatments in ‘continuing’
and ‘permanent’ disorders of consciousness
Prognosis for patients in disorders of consciousness becomes
more accurate over time. The longer a brain-injured patient remains unconscious, the
less good their eventual recovery is likely to be. At four weeks post-injury, a
patient who is still unconscious, or virtually so, is said to be in a
‘prolonged’ or ‘continuing’ disorder of
consciousness.23 This is not a ‘permanent’ diagnosis; recovery
can and does continue for at least some months, and often for some years. A
permanent vegetative state (PVS) cannot be diagnosed until several months after
non-traumatic injury, three months in the US and six months in the UK.24 It takes even longer
for a PVS diagnosis if the injury is the result of a traumatic injury; in that case
a permanent diagnosis is not appropriate until at least one year.25 The time span is
extended again if the patient is minimally conscious, rather than completely
unconscious; only after five years can the ‘minimally conscious
state’ (MCS) be formally diagnosed as permanent.26 In practice, this means that many
patients are maintained for years in vegetative or minimally conscious states in the
hope of eventual recovery, and a few of the patients whose families we interviewed
had, in fact, recovered full consciousness, albeit with profound multiple
neurological (and physical) disabilities which meant that they still lacked capacity
to make medical decisions for themselves.27 However, as we have explored
elsewhere, by the time that the patient’s diagnosis (for example, as being
in a PVS) is finally confirmed, the ‘window of opportunity’ for a
relatively quick death (for example, by removing a ventilator) has usually long
passed.28
Ongoing medical treatments and procedures provided to these
patients can include, in addition to clinically assisted nutrition and hydration,
some ongoing mechanical ventilation/breathing support (for example, oxygen at night,
a tracheotomy, or regular suctioning), a range of medications including antibiotics
(especially for pneumonia, which is common in this patient group), and
physiotherapy. They may also receive other diagnostic procedures and interventions
(such as routine cancer screening and testing for cholesterol, hypertension, or
diabetes), plus any relevant treatments for these conditions and immunizations (for
example, the ‘flu jab’). For many family members these various
treatments became less and less appropriate for their relative over time, as they
came to believe that their relative would not want to be kept alive in their current
state.
Many families were aware that CPR would not be available to
their relative and accepted this. The single most common reason was
that they came to believe that their relative would not want it. Mikaela’s
father had, some years prior to the injury which left him in a vegetative state,
survived a stroke which left him impaired but still with a quality of life he
considered worthwhile. Mikaela reported having had conversations with him about his
wishes because of this earlier injury, ‘I knew how he was. His views on this
kind of thing before were so strong after his stroke that he didn’t want to
be alive if he couldn’t do things for himself … So that [agreeing to
no resuscitation] was easy for me’.29 Mikaela was relieved that she knew
her father’s wishes, and it made it ‘easy’ for her to know
that (for him) CPR was not an appropriate treatment. Jim, likewise, felt that the
burden of deciding about proper treatment for his wife, Amber, was lifted by his
knowledge that Amber did not want CPR. Asked how he knew, Jim said:
From our discussion. I knew that Amber, if the only
course of action was to resuscitate her, Amber didn’t want it done.
And it made – I mean, when the consultant told me, I turned round
and said ‘That is Amber’s wishes’. I didn’t
have to make the decision.30
Another interviewee, Gordon, described how his family arrived
at the decision that his wife should be given only limited CPR, and, again, this was
based on the family understanding of what the views of the patient would have been:
The three of us discussed it, and we told them what our
view was … we said they should try and resuscitate her once and if
it was a respiratory or if it was a cardiac, they should try and resuscitate
her once and if she didn’t respond forget it. And she pulled
through. And that happened two – I think two other occasions.
(Interviewer: What did you take into account in trying to make
that decision at that time?) The life that she may have
afterwards and also going back to her and my discussion, that she
didn’t want to be a burden on anybody. And if she wasn’t
going to have a reasonable life after it, if she was going to be more
incapacitated than what she was – we didn’t want that for
her. We didn’t want that for her and she wouldn’t have
wanted it either.
On the other hand, several families successfully challenged
‘do not resuscitate’ notices. For them, CPR was
appropriate medical treatment because they did not want to ‘give up
on’ the patient. They believed the patient ‘deserved a
chance’, and would have wanted to take that chance themselves.31 Fern, talking about
her partner, said that she at first believed: ‘He’s got to have a
fighter’s chance, how dare you give him a DNR [Do Not Resuscitate
order].’ Shortly after the DNR had been removed, Fern’s partner had
a second cardiac arrest and was resuscitated. Reflecting on this some years later
Fern commented:
the brain damage he sustained the second time has been
catastrophic. Absolutely catastrophic. … And I do regret that, you
know, well no I don’t, I don’t regret it. At the time I made
a choice for him that I felt was right at that time. But I now know I could
never put another one on him and should I be in a situation with anybody
else I care about, I probably wouldn’t do it … I just
couldn’t do it to another human being what I feel like we’ve
done to him … But having seen the damage of … removing the
DNR … I think they were right to put it on him. I can’t
regret it. What can I do now – we did it. But I definitely –
should I repeat this over again in some weird parallel universe I would not
remove it. I would let him die on that second cardiac arrest.32
Like Fern, Daisy and the rest of her family also, at first,
insisted that their relative should be resuscitated if necessary and receive all
other possible treatments. However, the whole family subsequently came to believe
that he would rather be dead than continue in his MCS. Looking back, Daisy (like
Fern) still sees decisions made to demand treatments considered inappropriate by the
medical professionals as right at the time. The decisions were
right because they would have been what her brother would have wanted them to do,
even though, like the rest of the family, he would later have changed his mind about
wanting to be kept alive and might have made different decisions had he had more
information:
At the time we didn’t know anything at all
[about serious brain injury and its implications], and Nathan
wouldn’t have known anything at all. If Nathan had
me in that situation, he would have fought for
me to have everything possible … Because of
what we’ve experienced we now know the consequences of everything.
But not having known what the consequences were, we definitely, definitely,
wanted to fight [for treatment] … I mean if all of us had been
experts at the time in brain injury and Nathan had as well, then we would
have all said, ‘Oh no, don’t worry about treatment. I know
that he would prefer to die.’ But the whole point is we
didn’t.
The importance placed on what the patient would have wanted
extends, in some of these accounts, then, to recognising that the patient (like the
family) would at first, albeit out of ignorance, have wanted all possible
life-prolonging treatments and would (like the family) have only gradually come to
realise that they were only extending a life which would never again be (for them) a
life worth living.
Some family members reflected guiltily that the treatments they
wanted for their relative, and were fighting for, might be ethically unjustifiable.
The mother (Ann) and sister (Bea) of a long-term PVS patient (interviewed together)
commented:
Bea:
The other thing that … I had trouble with,
was fighting for Fiona’s care at the [financial] cost that we
know it is and fighting for that above the care for possibly a cancer
patient who’s a parent of young children or something. And we
find – I find that very difficult to deal with, to think about.
I just try not to think about it.
Ann:
Yeah, it gives you very much a guilt complex when
you think how much money is involved and how that money could be used.
Yes. But, you know, when it’s your own, you have to fight for
them. There’s nothing else you can do. But, you know, common
sense tells you that it could be used a lot better.
Once families accept a permanent diagnosis, they oppose many
more treatments. When death is seen as what the patient would prefer, many
treatments designed to keep the patient alive are seen as inappropriate. As Fern
says, it is not a life her partner would want:
You get to a point when there’s no improvement
and you stop being able to convince yourself there is. When they are
constantly hooked up to IVs and having painful UTI infection … When
they spend their entire life in a state of pain and discomfort …
this isn’t a life worth sustaining. It’s not a life they
would want and it’s not a life I want for him. And no matter how
much I would like to believe he would have a miracle and we would see him
recover and how much joy that hope would give me, if you can’t see
that anymore and you realise that death would be better now, I think
that’s when the acceptance comes … There’s better
ways to show I love him than to prove I’m sustaining him. You know,
he knows I loved him. I’ve done it. I’ve got my medals. I
was there [laughs]. I supported him. I fought for him …
Don’t need to prove it to anyone, because I proved it to myself and
I proved it to him. He knows it. He knows that I did everything I
could.33
Phil was more ambivalent about whether antibiotics were
appropriate treatment for his (minimally conscious) partner, setting his
partner’s previous views (that ‘no one would ever want to be like
this’) against what he felt facing that situation, and holding open the
‘horrible’ possibility of non-treatment. Again, the touchstone for
deciding on appropriate treatment was what the patient himself would have wanted
and/or what he might plausibly want now:
But I think if he did get really ill then I probably
would look to see if he could just go quietly. And I talked to his –
luckily he and I and his mum were always on the same page about no one would
ever want to be like this. They say that if you are like
this then your perspective changes, so you can’t guarantee that he
wouldn’t want to have an existence where he could have pleasure from
my daily visits, daily visits from other people and the dog and all those
things. But if something serious happened to him health-wise again we might
look to see if he would be able to go quietly instead of fighting so hard to
help him live, and that’s horrible.34
Withholding or withdrawing treatment is often described by
families (and clinicians) as ‘leaving nature to take its course’ or
‘letting fate decide’, or even allowing the patient – or the
patient’s body – to decide. Ann and Bea, mother and sister of the
patient, agreed with the hospital early on that mechanical ventilation was an
inappropriate treatment for her pneumonia:
Ann:
Yeah, but there was a question of her going back on
a ventilator.
Bea:
They suggested that we probably didn’t want
to do that.
Ann:
And we decided we didn’t
want to do that because-
Bea:
But it’s interesting that they did suggest
it.
Ann:
Yes, because they said, ‘Well, you know,
she might get over it this time, but maybe two months down the line
it’ll happen again’, and so on. And so we decided, no,
we don’t want to just see her weakened, weakened and weakened
and, you know, go that way. So we decided that we’d leave it to
fate at that point, you know.
Untreated illness without proper palliative care leads patients
to behave in ways that family members interpret as evidence of pain; for example,
the ragged breathing, choking, coughing, and gurgling phlegm of untreated pneumonia.
When families experienced the patient as suffering they saw treatment such as
ventilators and antibiotics as appropriate, even if they had previously believed
that these treatments should be withheld to allow the patient to die. When
life-prolonging treatments could also relieve suffering, they were actively
requested for that reason. Ann and Bea (quoted above) subsequently reversed their
agreement to non-treatment for their relative, with Bea actively involved in
providing chest physiotherapy on one occasion when her sister became very unwell
with pneumonia because she felt her sister was suffering. The wife of another
patient similarly could not sustain her position that no treatment should be
provided for her husband’s chest infections. She said that, ‘He had
a lot of phlegm and was choking – and that’s horrific, watching
someone who’s going through like that. And again you think, “Can I
really be that cruel?” You can’t’. (Shula)
Thus, distress about patient suffering during the dying process
led families to request life-prolonging treatments, even when they considered them
otherwise inappropriate and believed the patient would rather be dead.
When family members viewed treatment as possibly illegitimate
they compared it to criminal acts like torture, Kathy said, ‘I feel like
I’ve sat watching her being tortured at times and I’ve tried to
comfort her while that’s happening to her. And that’s a very morally
ambiguous position’. Similarly, ‘[c]ontinuation of this painful,
frustrating non-existence and not being able to do anything he was before is not in
his best interests. Prolonging it is akin to torture’ (Daisy). And Dee said:
They kept saying, she’ll still be PVS in a
year. So just wait a year and then you go to court. And we were going,
‘But she’s suffering now. Why make her suffer 365 days
before she can be put out of her suffering? And they just said, well,
that’s the law, you have to wait 365 days.’ So as far as we
saw it, she was being tortured for 365 days and then we would get a court to
agree that she could be allowed to die.
Furthermore, the conduct of medicine/practitioners/medical
institutions was sometimes presented as illogical, improper, and an abuse of power
akin to hijacking and kidnapping:
Just because you’re in a uniform and you work
for a big corporation, it does not give you the right to kidnap someone and
force them. But evidently it does in the world we live in. Evidently, they
can hide behind that … You love them. They don’t …
And if you don’t have the right, which you don’t, you know,
and that goes all the way from the beginning all the way through.
It’s, well, disgusting. Disgraceful isn’t the word for it.
Again, it is just so wrong. They’re hijacked and kidnapped
throughout, yeah, because the kidnapping started for Bill there, and
continued. (Rose)
In sum, families’ beliefs as to what constitutes proper
medical treatment for patients in long-term disorders of consciousness is a complex
phenomenon generally rooted in their belief about what their relative would have
wanted, with an understanding that this would have changed over time (as the outcome
for the relative became clearer). Views are also informed by the desire to release
the patient from a life not worth living, balanced by the desire to avoid the
patient suffering repeated near-death experiences.
The special case of artificial nutrition and hydration
Severely brain-injured patients cannot swallow and can only be
provided with the nutrition and hydration essential to sustain life by tube feeding.
Usually, artificial nutrition and hydration (ANH) is delivered via a nasal-gastric
tube within the first few days after injury, followed a few weeks or months later by
surgery to insert a tube directly into the stomach (for example, percutaneous
endoscopic gastrostomy (PEG) or other surgically inserted gastrostomy tube). Both
inserting feeding tubes and delivering substances through them are legally defined
as ‘medical treatment’,35 and can be done without the
patient’s consent if (in the absence of a valid and applicable advance
decision to refuse them) they are considered to be in the patient’s best
interests. What makes ANH a special case, and unlike all other medical treatments
provided to patients in disorders of consciousness (and indeed, unlike all
treatments for patients with any other diagnosis), is that, in England and Wales, it
cannot be withheld or withdrawn without a declaration from the
courts of the lawfulness of so doing.36
Inserting a feeding tube is an invasive procedure, and its use
is associated with risks (for example bleeding, displacement, and infection) and
burdens (discomfort caused by pulmonary edema and gastrointestinal disturbance).
Feeding tubes can also become blocked, worn out, or require repositioning due to
infection, all of which require further invasive procedures. It is widely recognised
that ANH may not always be in a patient’s best interests, especially near
the end of life, and treatment is commonly withheld or withdrawn in these
circumstances.37 When a patient is not imminently dying, the General Medical
Council’s guidance requires that a second clinical opinion is sought before
withholding or withdrawing ANH.38 However, for PVS and MCS patients, and
only for this group of patients, withdrawal of ANH requires
legal review. An application must be made to the Court of
Protection for a declaration that it would be lawful to withdraw ANH.39 This requirement is a
legacy of the Bland case, in which the House of Lords recommended
that a court declaration should be required in such cases ‘at least for the
time being and until a body of experience and practice has been built up which might
obviate the need for application in every case’.40 The requirement remains, despite the
view of the British Medical Association and expressed more than a decade after the
decision in Bland, that PVS cases should no longer inevitably
require court review where consensus exists, as long as such withdrawal is in
accordance with agreed guidelines.41
Following the decision of the Supreme Court in Aintree
University Hospitals NHS Foundation Trust v James, the focus of the
court is not supposed to be on whether it is in the patient’s best interests
to withhold treatment (of any kind) but on whether it is in their best interests to
give or to continue treatment.42 But the requirement to seek declaratory relief
specifically in relation to withholding or withdrawing ANH from
patients in a PVS or a MCS, and not for providing or continuing to provide this
medical treatment, appears contradictory. It also places ANH in an anomalous
position in relation to the concept of the medical exception. A procedure considered
a tortious or criminal offence if it is not performed in the best interests of the
patient is singled out for special scrutiny by the courts. But this special scrutiny
is designed in order to establish the lawfulness of non-treatment
rather than of treatment, and only for this particular group of patients. Following
the decision in Bland, courts must be approached for declarations
that it is lawful to withdraw feeding tubes from patients in a PVS,
but not for permission to (re)insert them or to continue administration of nutrition
and hydration through them after a PVS diagnosis is confirmed. Two recent Court of
Protection cases addressed treatment provision for patients in a PVS for whom ANH
had been provided for four years43 and nine years,44 respectively. Withdrawal was
declared to be lawful in both cases, but neither judge conveyed any concern about
the improper medical treatment meted out to these patients over such long periods of
time. It is this focus on the lawfulness of non-treatment rather
than of treatment that makes ANH a special case for patients with
disorders of consciousness and for their families.
Every court case in England and Wales concerning the
administration of ANH to a patient with a confirmed PVS diagnosis has resulted in
the treatment being withdrawn or withheld. In the over 100 cases since
Bland, ANH has never been found to be in the best interests of
a patient in a PVS. There is, then, no legal justification for making a medical
exception of ANH for PVS patients. However, ANH for PVS patients is routine
practice, supported by families, treating clinicians, Clinical Commissioning Groups
(CCG), insurance companies, and NHS continuing healthcare funding. Doctors do not
seem to fear prosecution for offences against the person of the PVS patients to whom
they deliver ANH, and the law seems tacitly to condone the
widespread administration of ANH to PVS patients. For example, there has been no
litigation against medical professionals who have authorised, permitted, or
performed ANH-related treatments on their PVS patients, and public funds are used to
support the practice.45 Perhaps, then, we overstate the importance of the medical
exception as providing protection for doctors who might otherwise face tortious or
criminal charges, since it seems that a medical treatment that cannot claim this
status is, nonetheless, widely practiced, commonly accepted, has never been
prosecuted, and does not, even when treatment cessation is declared lawful, attract
the censure of the courts.
One contributory factor that may help to account for this
apparently contradictory situation is a widespread perception that ANH differs from
other medical treatments in being an ordinary (as opposed to an extraordinary) part
of basic care, and, perhaps, from some perspectives, not a medical treatment at all.
Providing food and water has a powerful symbolic value, and the alternative is often
described as starving someone to death. The legal requirement to apply for
declaratory relief for withdrawing ANH, but not other treatments (such as
antibiotics or mechanical ventilation), supports that perception. Most of the
families we interviewed, even those who approved or initiated court applications for
withdrawal of ANH, believed that ANH was, in fact, appropriate or proper treatment
for their relative.46
Those who accepted or advocated its withdrawal did so only because it was the
‘least worst’ option in a desperate situation; that, it was the only
(lawful) way of bringing about the patient’s death. For example, Jane
responded angrily to a care home manager’s advice about the possibility of
ANH being withdrawn from her father, and expressed her baffled outrage to the
interviewer:
Have you heard of that? That’s crazy to me.
Because they can’t tell you if they can feel anything, but they will
let them die if they stop his feed. So you have to watch your family member
starve to death. It’s just – what – who would do
– why? Why? Why would you want-? Why? That’s the bit
– why? It just doesn’t make sense.
Similarly, Morag was completely opposed to withdrawing ANH from
anyone, however badly brain-injured:
We could have applied for a court order to remove his
feeding, his tube feeding, but you wouldn’t starve an animal to
death, so you certainly wouldn’t starve your loved one to death
because people can live for such a long time without food and just getting
weaker and in more pain. And there was no way – you know, you
wouldn’t starve an animal to death, so there’s no way that,
you know – for me, that’s not an option, you know. I just
don’t see how that could ever be an option.47
Families said they had come to see ANH as an
option at the point at which they believed that the
patient’s suffering could no longer be justified and there seemed no other
way out. For example, Helen initially believed that ‘there’s no way
I would even consider that’, but later changed her mind, and supported an
application for ANH to be withdrawn so that her son could die:
[A]bout twelve months later I’d seen him
through several nightmare urinary tract infections. I’d watched him
lose weight. I’d watched his skin start to break down. I’d
seen him in pain. I’d seen the splints that he’d got on his
hands start to cut into his wrists. And just the general wear and tear of
intensive and invasive nursing practice began to tell on his overall
physical health. And it was at that point I started to reassess.48
Another interviewee, Gunars, said that he had first realised
that his sister was probably in a PVS after reading a newspaper story about the
death of Helen’s son from ANH-withdrawal. The family had never been given a
diagnosis, but the journalist’s description of PVS ‘ticked every
box’. His family then initiated the process whereby the CCG applied for a
declaration from the courts that withdrawing the feeding tube from his sister would
be lawful, and his sister died ten days after this declaration had been granted.
Despite actively participating in this process, Gunars was, nonetheless, clear that
the provision of nutrition and hydration to a PVS patient is
appropriate treatment, and that withdrawing it in order to allow death is neither
compassionate nor dignified:
What we look for as human beings is to be treated
compassionately and with dignity, and in many ways a prisoner on death row
in America gets treated better because at the end of the day he will
eventually find out that the day of reckoning’s come and
it’s a simple injection. But what we discovered in the process we
entered into was my sister was effectively going to be denied hydration and
nutrition which basically means that you’re starving somebody to
death. Is that a humane way to treat a human being? My response to that is
not … And fundamentally in this country we treat our pets, our farm
animals, our equine friends, more sympathetically and with greater
compassion and dignity than we do human beings.49
Gunars’ partner, Margaret, pointed out that:
[I]f we wished to bring this to a conclusion because we
considered that it was in her best interests, then that was the only route
that was available to us … We don’t think it is the best
option. We think there should be other options. But within the law at the
moment it would appear that is the only option.50
There is a real disjuncture here between legal and family
perspectives relating to ANH cessation. From the legal perspective, at least in
theory (though as we have outlined above, the situation is more complicated in
practice), ANH is medical treatment, and has never been considered
appropriate for patients in a PVS. In addition, a person making a best interests
decision regarding life-sustaining treatment ‘must not, in considering
whether the treatment is in the best interests of the person concerned, be motivated
by a desire to bring about his death’.51 From the family perspective, ANH is
very often considered to be basic care, and, as such, is
appropriate for PVS patients. They are often horrified and dismayed at the idea of
ANH being withheld or withdrawn. The only reason family members are willing to
support cessation of nutrition and hydration is because they believe their relative
would rather be dead, and they understand that this is the only lawful method
whereby this objective can be definitely accomplished,52 most especially if, as most have,
they have repeatedly witnessed the failure of other lawful methods of allowing
death, for example, untreated pneumonia.
Conclusion
In this chapter we have explored family perspectives on proper
treatment in relation to their vegetative and minimally conscious relatives. What is
distinctive here, as compared to other treatments considered in this collection, is
that the majority of the treatments provided to such patients are now commonplace
and well-established treatments for patients generally, for example ventilators and
feeding tubes, rather than being particularly new or controversial per se. Our
analysis has shown that families’ views about proper medical treatment for
severely brain-injured patients generally include full emergency treatments and all
possible life-prolonging measures in the acute period in order to stabilize the
patient and buy time to consider diagnosis and prognosis. However, treatments seen
as appropriate in the first year or so may be viewed as no longer appropriate two or
three years later because if the patient remains in a vegetative or minimally
conscious state, then the rationale for such interventions is no longer justified.
The possibility that the suffering and indignity the patient is enduring might open
the door to a future life that the patient would find worthwhile has receded. At
this point families may agree with clinicians that certain treatments should not be
given, in the full expectation that the patient may soon die (after all, the
patient’s life seemed to ‘hang on a thread’ in the emergency
period). However, unlike patients with terminal cancer, or the very frail and
elderly, these patients (often young and physically healthy) may continue to live
for years or decades as long as ANH continues to be provided, despite decisions such
as ‘no aggressive treatment’ of infections. This leaves some
families retrospectively to view initial treatment decisions as misguided,
questioning treatments that resulted in their relative being kept alive. On the
other hand, some people retain a belief that decisions to deliver life-sustaining
treatments early on were proper at the time, based on their own or
their relative’s ignorance, the clinician’s lack of certainty of the
outcome, and the need to give their relative the chance of a meaningful recovery
(even if, as it turns out, that chance has not ‘paid off ’).
The special place of ANH as a treatment that cannot be
withdrawn without resort to the courts is highly significant in shaping family views
of proper medical treatment. By requiring declarative relief for withdrawal of this
particular treatment (and no other) from this patient group uniquely (while ANH can
be withdrawn from all other patients without legal review), the law acts to deter
ANH withdrawal from PVS and MCS patients, adding to the already hugely symbolic
freight of ANH withdrawal the additional, often intimidating, obstacle of
court-rooms with lawyers, expert witnesses, judges, and, potentially, the media. It
leads to life-prolonging treatment by default, without reference to the best
interests of the person who (in the opinion of many families) is
‘trapped’ in a ‘fate worse than death’. Keith
Andrews, a leading neuro-rehabilitation specialist, commented on the reasoning in
Bland that ‘the only reason that tube feeding has been
identified as “treatment” has been so that it can be
withdrawn’.53 It is ironic, then, that two decades later, routine medical
practice is to deliver ANH to PVS and MCS patients as
if it were a proper and legitimate treatment, and that the law (in
particular, Practice Direction 9E)54 constitutes a barrier to any systematic consideration of
whether or not continued delivery of this medical treatment is covered by the
medical exception as being in the patient’s best interests.
- *
This chapter was part-funded by an ESRC Knowledge Exchange
Grant [ES/K00560X/1], which also supported the http://www.healthtalk.org
module where extracts from the filmed interviews can be viewed. The work was
also supported by Research Priming Funds provided by the Wellcome Trust [ref:
097829/Z/11/A] through the Centre for Chronic Diseases and Disorders (C2D2) at
the University of York.
- 1
- 2
These are the criteria for determining whether a person has
the capacity to make decisions for themselves: Mental Capacity Act (MCA) 2005,
s. 3(1).
- 3
F v West Berkshire Area Health Authority
[1990] 2 AC 1, HL.
- 4
Grubb A. Editorial: Who decides? Legislating for the incapacitated
adult. European Journal of Health Law. 1998;5:231–232. [PubMed: 11657580].
- 5
Despite common public belief to the contrary, family
members have never had the right (qua family members) to consent to medical
treatments on behalf of an adult relative (and still do not). The courts had
jurisdiction to consent to surgery under the common law principle of
parens patriae, the Crown’s ancient duty to protect
‘imbeciles, lunatics and idiots’, but lost this, more by
accident than design, in 1960 with the coming in to force of the Mental Health
Act 1959, leaving the lacuna in the law to which the House of Lords was now
responding.
- 6
F (n 3) 34, per
Butler-Sloss LJ; 53, per Lord Brandon.
- 7
- 8
Emergency treatment was recognised as an exception
(Wilson v Pringle [1986] 2 All ER 440, CA), as were mental
health treatments delivered to patients detained under the Mental Health Act
1983.
- 9
This doctrine is traced back to R v Dudley
& Stephens (1884) 14 QBD 273: see AWB Simpson,
Cannibalism and the Common Law (University of Chicago
Press, 1984).
- 10
This test is widely used in the law of medical negligence
and requires doctors to act in accordance with a practice accepted as proper by
a responsible and competent body of relevant professional opinion: Bolam
v Friern Hospital Management Committee [1957] 1 WLR 582.
- 11
Law Commission, Mentally Incapacitated Adults and
Decision-Making: An Overview. Consultation Paper No. 119 (HMSO,
1991); Law Commission, Mentally Incapacitated Adults and
Decision-Making: A New Jurisdiction. Consultation Paper No. 128
(HMSO, 1993); Law Commission, Mentally Incapacitated Adults and
Decision-Making: Medical Treatment and Research, Consultation Paper No.
129 (HMSO, 1993); Law Commission, Mentally Incapacitated
Adults and other Vulnerable Adults: Public Law Protection, Consultation
Paper No. 130 (HMSO, 1993); Law Commission, Mental
Incapacity, Consultation Paper No. 231 (HMSO, 1995).
- 12
The only exception is when the person has a valid and
applicable advance decision to refuse treatment (under the MCA 2005, ss
24–26), in which case best interests gives way to the decisions made by
the individual. As with a contemporaneous refusal by a person with capacity,
these prospective decisions can be binding even if those caring for the person
believe them to be counter to the person’s current best interests:
Department for Constitutional Affairs, Mental Capacity Act Code of
Practice (TSO, 2007) paras 5.4, 5.34. Best interests also does not
apply, in certain circumstances, to participation in research (para. 5.4).
- 13
- 14
Aintree University Hospitals NHS Foundation Trust v
James [2013] UKSC 67, para. 45, per Lady Hale.
- 15
Valuing Every Voice: Making the Case for the Mental Capacity
Act. HM Government; 2014. [accessed 19 December 2014]. The Government’s Response to the House of Lords
Select Committee Report on the Mental Capacity Act 2005. Foreword by the Minister of State for Care Services and the
Minister of State for Justice and Civil Liberties, available at
www.gov.uk/government/publications.
- 16
Clements L, Kitzinger C, Kitzinger J. Serious medical decisions and the Mental Capacity Act: Giving
and withholding treatment for patients in prolonged disorders of
consciousness. (work in progress).
- 17
See W Healthcare NHS Trust v KH and Others
[2004] EWCA Civ 1324, and P (Statutory Will), Re [2009] EWHC
163 (Ch), for judicial discussion of the distinction between best interests and
substituted judgement. The distinction was also made in the Law
Commission’s 1991 consultation paper (n 11). By the second round of
consultation in 1993, the Commission had arrived at the view that they
‘doubt[ed] that the two tests need be mutually exclusive, and favour[ed]
a compromise whereby a best interests test is modified by a requirement that the
substitute decision-maker first goes through an exercise in substituted
judgment’, a position they confirmed in their final report on the
grounds of the agreement of those they had consulted, Law Commission,
Consultation Paper No 128 (1993) (n 11) para. 2.14, leading
to ss 4(6) and 4(7) of the 2005 Act.
- 18
For more information about families we interviewed, the
interview questions, and our anonymising procedure see Kitzinger C, Kitzinger J. Withdrawing artificial nutrition and hydration from minimally
conscious and vegetative patients: Family perspectives. Journal of Medical Ethics. 2015;41:157. [PMC free article: PMC4316914] [PubMed: 24425753]; Saunders B, Kitzinger J, Kitzinger C. Anonymising interview data: Challenges and compromise in
practice. Qualitative Research. 2014. [accessed 19 December 2014]. (online advance access, DOI: 10.1177/1468794114550439), available
at http://qrj.sagepub.com/content/early/2014/09/23/1468794114550439.
refs. [PMC free article: PMC4582834] [PubMed: 26457066]. Filmed extracts from many of our interviews can be viewed on our
online module on ‘Family experiences of the vegetative and minimally
conscious states’, available at http://www.healthtalk.org
(accessed 19 December 2014).
- 19
Mason JK, Laurie GT. Law and Medical Ethics. 8th edn. Oxford University Press; 2011. p. 66.
- 20
- 21
Advance decisions to refuse treatment now have statutory
support: MCA 2005, ss 24–26.
- 22
- 23
- 24
- 25
- 26
RCP (n 1) section 1.5: ‘Permanent’ means,
in this context, that recovery ‘may be regarded as highly
improbable’.
- 27
- 28
- 29
- 30
- 31
See Aintree (n 14), where there was a
long disagreement between a family and a hospital as to whether particular
medical treatments were appropriate. The patient, David James, died of a cardiac
arrest after the Court of Appeal declared that it was lawful to withhold CPR, a
decision subsequently upheld by the Supreme Court.
- 32
- 33
- 34
- 35
Airedale NHS Trust v Bland [1993] AC 789,
HL.
- 36
Court of Protection Practice Direction 9E, Applications
relating to serious medical treatment, para. 5.
- 37
Ganzini L. Artificial nutrition and hydration at the end of life: Ethics
and evidence. Palliative & Supportive Care. 2006;4:135. [PubMed: 16903584].
- 38
General Medical Council (GMC), Treatment and Care
Towards the End of Life: Good Practice in Decision Making (GMC,
2010) para. 106. Also, paras. 121–122.
- 39
Practice Direction (n 36).
- 40
Bland (n 35) 859, per
Lord Keith.
- 41
British Medical Association. Withholding and Withdrawing Life-prolonging Medical Treatment:
Guidance for Decision Making. 3rd edn. Blackwell Publishing; 2007. p. 61.
- 42
- 43
NHS Trust v AW [2013] EWHC 78 (COP).
- 44
Gloucestershire Clinical Commissioning Group v
AB [2014] EWCOP 49.
- 45
See Lewis P. The medical exception. Current Legal Problems. 2012;65:355., for a cogent and incisive analysis of the ineffectiveness of the
medical exception as a selection tool for new and controversial medical
procedures.
- 46
Extending the torture analogy, a small number of
interviewees described ANH as ‘force-feeding’ and drew
comparisons with the force-feeding of political prisoners on hunger strike at
Guantanamo Bay Detention Camp, or the force-feeding of imprisoned suffragettes
in the early twentieth century. This view may be particularly likely for
families whose relative is in a MCS rather than a PVS, and where the feeding
tube is dislodged or pulled out by the patient. See United Lincolnshire
Hospitals NHS Trust v N [2014] EWCOP 16 for one such case.
- 47
- 48
- 49
- 50
- 51
- 52
Kitzinger and Kitzinger (n 18).
- 53
- 54
Practice Direction (n 36).