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Resuscitation
Resuscitation is just one of the many topics to which I should have liked
to give more room in my book A Survival Guide to Later Life. Here
is an account of this controversial subject. It would have appeared in the
chapter ‘Your Life in their Hands’, on page 446. As with the
book itself, the material is correct as at October 7th, 2003.
Chapter 14: Your Life in their Hands
When we are in hospital we cannot avoid being largely at the mercy of other
people. For elderly people, this is dramatically highlighted by the issues
of resuscitation, or the lack of it, and the withholding or withdrawing of
fluids and medical treatment.
Resuscitation
Mrs Jill Baker, aged 67, who suffered from stomach cancer, was admitted to
hospital with septicaemia. Unhappy with her care, she discharged herself
and demanded to see her hospital notes. She was horrified to discover that
a doctor had, unbeknown to her or her husband, written that in view of her
cancer, artificial resuscitation should not even be attempted should she
suffer a cardiac arrest. Nine months later she was enjoying a good quality
of life. Mrs Baker’s story made headlines in 2000, but it is not that
remarkable.
A patient has no legal right to be resuscitated. The instructions DNAR (do
not attempt resuscitation), or DNR, are entered into a patient’s notes
by a doctor (usually a consultant), and it is only a doctor who can alter
or rescind them. Nobody knows how often these orders are written on patients’
notes throughout Britain, but it is likely that such instructions are common,
particularly for elderly people, and that they have often been issued in
the past with little or no consultation with the person to whom they relate.
So what exactly is resuscitation, what are the circumstances to which it
is most likely to be relevant and what are the chances of its being successful?
Essentials
Resuscitation (or “cardio-pulmonary resuscitation”) means artificially
restarting the circulation and respiratory systems when they have stopped.
Together, these systems enable oxygen to reach tissues, and waste products
to be removed. Once your heart stops beating and fresh blood therefore fails
to reach your brain, you lose consciousness within a matter of seconds. Within
minutes, brain cells will start to die, and within about four minutes, irreversible
brain damage is likely to have occurred. After a further two or three minutes
your brain will fail to respond to electrical stimuli, and you will then
be judged clinically dead.
The respiratory system (to bring fresh oxygen to the blood) and the circulatory
system (to take that blood to the brain and to remove waste products) can
of course be restarted artificially by a first-aider confronted by an individual
whose heart and respiration have stopped because they have suffered, say,
an electric shock, near-drowning or a heart attack. The kiss of life is one
way of restoring breathing; pumping up and down on the chest, or cardiac
massage, is intended to get the heart functioning again. These actions also
provide a temporary means of maintaining breathing and circulation until
the person’s own respiration and circulation systems take over again.
The form of resuscitation with which most of us are more familiar from hospital
dramas on television involves a patient in a bed with a heart monitor regularly
beeping which then becomes a flat line (indicating that the heart is not
beating at all) or a higgledy-piggledy line (indicating the heart has become
a mass of uncoordinated quivering jelly in which muscular activity is uncoordinated).
The electric shock applied with paddles is a method of kick-starting the
heart muscle into beating again.
If the patient was healthy beforehand (and a cardiac arrest may occur after
a perfectly routine operation) a doctor would have a very high chance, perhaps
90 per cent, of restarting a heart which would be in perfectly good working
order. However, the situation is different when patients have been very sick.
People suffering from major illnesses such as heart or lung disease or cancer
are much less likely to have their heart restarted successfully, probably
less than 10 per cent, and it is lower still if they are also very elderly.
The process itself, which may take half an hour or longer, has certain risks
and side-effects. Although resuscitation is not painful, since the person
will be unconscious, the massive electric shock which is needed unavoidably
stimulates all the muscles in the body and is like a massive fit. After it,
the body is sometimes covered in bruises, while the application of the paddles
through which the current passes may burn the skin. Elderly, frail patients
may suffer fractures of the ribs or breastbone. They may also come round
afterwards with soreness around the throat, as a plastic tube airway is usually
inserted into the windpipe to ensure more effective ventilation of the lungs.
It goes without saying, however, that pain can be treated and bruises fade.
But if there has been an interruption in blood flow to the brain despite
the procedure, then the patient may wake up after resuscitation permanently
brain-damaged.
There are many different circumstances in which an elderly person already
in hospital may suffer a cardiac arrest, and many possible outcomes. The
length of time any patient lives after successful resuscitation will be related
to the condition of the body before the arrest and the extent to which the
arrest has been permanent, fluctuating or temporary. You might be in hospital
suffering from high blood pressure which was being treated, but nonetheless
suffer a cardiac arrest simply because on one day your heart was under too
much pressure to keep going. Kick-starting your heart back into action could
be seen as part of continuing treatment for this one condition and, once
successful, you could be discharged. On the other hand, a heart attack in
a person suffering from very advanced cancer could be the last straw for
the heart. If the heart were restarted, an arrest would happen again within
minutes, and again if it were once more restarted. A common scenario involves
an elderly person falling perhaps out of bed, whether in a nursing home or
in their own home, and going in to hospital with a fractured hip. He or she
might seem all right after the procedure to right the hip, but the various
strains and stresses might be sufficient to provoke a cardiac arrest.
The Quality of Life
Amongst the factors doctors will bear in mind when deciding whether or not
to proceed with resuscitation, the one they rate most important is the patient’s
likely quality of life after resuscitation, in view of the medical condition
or conditions being suffered before the heart attack. But this is not as
easy to evaluate as it might appear.
The reason is that the doctor simply cannot know what the patient will feel
about his or her circumstances after a successful resuscitation. Reactions
to what life throws at us vary wildly. One person who can no longer walk
may feel their life is not worth living, while another might be extremely
pleased to be still alive. It is this key factor - psychological response
to medical condition and circumstances - which gives the patient a unique
right to be heard. But many doctors simply assume they know what a patient
will feel.
This can have unfortunate consequences. Professor Sam Ahmedzai heads the
Department of Palliative Medicine at the Royal Hallamshire Hospital in Sheffield.
In a radio programme in 2000 he commented,
"Very
often the decisions are made on the hoof, they are made in ward rounds or
in corridors, and doctors make these distinctions independently, either
as an individual (which is unforgivable, I think), or just a huddle of doctors
together. ... The information they have to make that decision is much less
than the amount of information they would need to decide to put patients
in for operations or to make certain diagnoses. I’ve been in many,
many situations in which a team will say what is the point of doing this
to Mr Brown or Mrs Jones because it doesn’t look as though their quality
of life is good to me? And basically it worries me when I see doctors and
nurses making decisions about someone else’s quality of life on very,
very slender evidence. ... The only true judge of someone’s quality
of life is the person themself, and all too often we just use what we think
is our own intuition, and clinical intuition lets us down.”/1/
Professor Ahmedzai has referred to research which has contrasted what doctors
think about a patient’s quality of life and what the patients themselves
think. He told me in an interview in 2001
"Doctors
cannot estimate quality of life. They can’t even reliably estimate
how much pain a patient is having: they frequently underestimate pain. They
underestimate nearly all symptoms. And they underestimate psychological
problems. Routinely when we do a direct head-to-head comparison with what
the patient says about quality of life on a questionnaire or interview with
what the doctor says, we find the doctor has underestimated. Of course the
more training a doctor has, the better he or she gets it; the longer the
doctor knows the person, the better they get it. So a GP who has had training
in communication skills would be very good at knowing whether a patient
would want resuscitation or not. But how often do doctors in a hospital
or hospice or nursing home even think of ringing up the GP to ask whether
such and such a person would want resuscitation?”
Professor Ahmedzai said that nurses also underestimate how patients perceive
their quality of life, though less so than doctors. Nonetheless, his own
research has found that even nurses in hospices, who are supposed to know
patients intimately, underestimated the instances in which cancer patients
would have wanted resuscitation. In a study in 1997 involving 23 patients
between the ages of 47 and 81 in a hospice in Sheffield, Professor Ahmedzai
and his team found a huge divergence of opinion in relation to resuscitation,
with 12 of the patients but none of the nurses in favour of the procedure.
The sample was very small, but it is interesting to note that readiness to
try resuscitation in these patients at least did not decline with increasing
age or with decreasing quality of life./2/
Guidance
As a result of publicity attracted by a dossier of 100 controversial resuscitation
cases, including that of Mrs Jill Baker, the government issued a new circular
on resuscitation in 2000 asking health authorities and health trusts (the
organizations in charge of NHS hospitals) to draw up policies on resuscitation
which would be freely available to the general public. In this circular,
the Department of Health says it believes that patients have a moral right
to be involved in making resuscitation decisions: “Chief executives
should ensure that patients’ rights are central to decision-making
on resuscitation; and that the trust has an agreed resuscitation policy in
place which respects patients’ rights.”/3/
However, the Department of Health declined to spell out just what a resuscitation
policy should actually be. Instead it states that “as with all decision-making,
doctors have a duty to act in accordance with an appropriate and responsible
body of professional opinion.” And it goes on to commend as a basis
for resuscitation policy the joint statement on the matter from the medical
professional bodies (the doctor’s organization the British Medical
Council, the Royal College of Nursing and the Resuscitation Council UK, which
is a body of medical practitioners with an interest in resuscitation). Soon
after the department’s circular was issued, in February 2001, these
three bodies released a new joint statement./4/ But while the Department
emphasized patients’ rights, the professional clinicians’ guidance
emphasizes something rather different – the need “to demystify
the process by which decisions are made”, through improving the communication
skills of doctors. And while the new guidance is generally speaking good
news for the patient who is alert and articulate, it sets out a view on the
standing of the close relative of the patient which could seriously weaken
his or her position when decisions are being made on resuscitation.
The guidance distinguishes between cases in which patients have expressed
their wishes beforehand, cases in which they have not and cases in which
they are not mentally capable of doing so. If a patient has expressed clear
views in an advance discussion with a doctor, then that or any other doctor
is expected to take those views into account, but not to be legally bound
by them; they are one of a number of things to be considered in the case
of advance decisions on whether or not resuscitation is to be attempted.
The guidance states that these
"...include
the likely clinical outcome, including the likelihood of successfully restarting
the patient’s heart and breathing, and the overall benefit achieved
from a successful resuscitation; the patient’s known, or ascertainable,
wishes; and the patient’s human rights, including the right to life
and the right to be free from degrading treatment.”
It is understandable that doctors should wish to give themselves a certain
amount of leeway. Perhaps the patient expressed his or her wishes in quite
different medical circumstances from those obtaining at the relevant moment.
But what should patients and their relatives do to ensure that their views
hold as much sway as possible?
If you are convinced that you would not wish to be resuscitated, then make
this clear. However, if you are concerned that you might not be resuscitated
and you wish to be, make this wish clear, re-express your desire to be resuscitated
at frequent intervals (particularly if your medical condition changes) and
take all possible steps to ensure that this results in the omission or deletion
of a DNR order and the insertion of a clear instruction to carry out resuscitation.
Once an appropriate instruction is in place, it is also important that you
should ensure that this is widely disseminated, and that if you are in hospital,
it is inserted in all the notes to which reference might be made, bearing
in mind that cardiac arrests can occur in the middle of the night when only
a junior doctor is on call.
Many patients will not think to check whether they are the subject of a DNR
order; they may not have been consulted by a doctor on the matter; or, as
frequently happens, a crisis may occur when they are not in a position to
indicate their views one way or the other. In circumstances in which a patient
of any age has not made clear their wishes, the medical professional bodies’
guidance says that there should be a presumption in favour of resuscitation,
but with the proviso that “it is unlikely to be considered reasonable
to attempt to resuscitate a patient who is in the terminal phase of illness
or for whom the burdens of the treatment clearly outweigh the potential benefits.”
Clearly, relatives of patients in this second category can have a crucial
role.
Relatives can also play a potentially key role in the third category the
guidance identifies, “incapacitated adults”, by which the guidance
means “an adult who lacks decision-making capacity”. Here, under
the guidance, authority is unequivocally given to doctors to act in what
they judge to be their patient’s best interest (and also to judge whether
that patient has the capacity to make decisions). In Scotland, the law allows
people to appoint somebody to take decisions for them over medical treatment
should they lose the capacity to do this themselves (pages 537-8). This provision
does not exist in English law. However, the guidance makes clear that even
proxy decision-makers acting under Scottish law cannot demand treatment which
is judged by the doctor to be against the patient’s interest. Referring
to the position of next of kin in England, Wales and Northern Ireland, the
guidance states:
"It
should be made clear that their role is not to take decisions on behalf
of the patient … Unless to do so would be contrary to the patient’s
interests, people close to the patient should be kept informed about the
patient’s health and be involved in decision-making in order to reflect
the patient’s views and preferences.”
There are good reasons for inserting the proviso “unless to do so would
be contrary to the patient’s interests”: there may be a conflict
of interest here. Somebody who stood to inherit might declare that the patient
did not wish to be resuscitated when he or she did. Some patients will tell
a doctor, but not their nearest and dearest, that they would not wish resuscitation
to be attempted. But in most cases, next of kin will want only what is best
for the patient. They may well want resuscitation to be attempted and find
themselves confronting a doctor who is unwilling to agree to it.
Influencing Decisions
In a hospital, the first thing to do in this situation is to ask to speak
to a member of the medical staff (preferably a consultant or registrar) or,
if none is available, a senior member of the nursing staff, and ask on what
grounds the decision was made. Was it the result of a conversation with the
patient, and if so, when did this conversation take place? If there was no
recorded conversation then you are in a good position to challenge the decision.
Speak to the consultant or a representative of the consultant such as a senior
registrar, either of whom should have enough authority to agree that the
DNR order should be rescinded. Of course, the consultant may say he or she
considers the order should remain in force, as judged in the patient’s
best interests. Medico-legally, doctors have a duty of care to the patient,
not to the family, so if they maintain that the decision was in the patient’s
best interests, they can still act on it regardless of what relatives think.
In this case, all the relative can do is to lodge a formal objection through
the hospital complaints committee. Go to the hospital trust’s medical
director to speed things up because delay can (literally) be fatal.
Since, legally speaking, the medical team is allowed to make the decision
they think is in the patient’s best interest, there seem to be only
two grounds on which you can fight a DNR order: the first is that you consider
that the potential benefits of the procedure outweigh the drawbacks. The
second is that the DNR decision has not been made in the correct manner.
Does it conform to any resuscitation guidelines which your health trust or
health authority may have drawn up? These will probably say that the decision
should be made by a doctor, but only after consultation. The BMA guidance
makes one point which could be useful: it states that decisions must be made
on an individual basis, and that it is unethical and probably unlawful under
human rights legislation for blanket policies to be applied which deny resuscitation
to groups of people, such as all patients in a nursing home, or all patients
above a certain age, or all with a particular medical condition, such as
cancer.
Of course, cardiac arrests do not only happen in hospital. Many will occur
in care homes, at home, in a relative’s home, in sheltered housing
or in a hospice. What then?
The first thing to do is to ensure is that if your relative is going to enter
any formal institution, from sheltered housing to a nursing home, there is
somebody on hand both day and night who could administer the kiss of life
and cardiac massage. Has the warden of a set of sheltered flats learned first-aid;
if so, to what standard, and is their training up to date? Second, it is
important to make sure that whatever resuscitation decision is made is agreed
and recorded clearly and prominently in your relative’s notes. If he
or she is taken ill in the middle of the night, and a locum doctor who has
never met him or her sends him or her to hospital where he or she suffers
an arrest, will it be clear in his or her medical records that resuscitation
should be attempted?
The Department of Health circular issued in 2000 asking health trusts and
health authorities to put in place resuscitation policies also applies to
primary care trusts. So GPs should be drawing up resuscitation guidance in
the notes of any patients where there might be any doubt about attempting
resuscitation. If you think you or your relative might fall into this category,
sort out the matter with your GP now.
It is important to be aware that in hospices, resuscitation policies are
usually different from those in hospitals. While the general rule in ordinary
hospitals is that everyone should be resuscitated unless it is clearly stated
otherwise, many hospices have the reverse policy: no one is resuscitated
unless specifically earmarked for this. Such an approach would seem to fly
in the face of the BMA’s stricture that blanket resuscitation policies
must not be applied, yet it nonetheless seems to operate. What is more, doctors
admitting patients to hospices when they are going to die fairly soon tend
not to bring up resuscitation with them or their relatives because they consider
the subject will probably prove distressing. They may have a different approach
towards people coming in for temporary care to have their medication adjusted
but who will then return home or to their care home. If you are in any doubt,
it is clearly worth raising the matter.
If a doctor faced with a resuscitation choice cannot assess a patient’s
quality of life and your relative is too sick to be asked, how do you judge
as next of kin? Obviously, you know what the person is like and whether you
think they do want to go on living or not. But I would suggest you find out
yourself, if you have not already done so, what is the likely course of such
medical condition(s) as your relative may have been suffering from, or which
the doctors advise may follow the cardiac arrest.
I base this on my own experience with my elderly mother, who was suffering
from Alzheimer’s disease. I arrived one day to visit her, only to be
told that she was in the A and E Department of the local general hospital
suffering a stroke, and that I might well be asked whether I wished her to
be resuscitated. I was completely unprepared to face such a dilemma. In fact,
resuscitation is not relevant when somebody is suffering a stroke, because
strokes themselves do not lead to cardiac arrests. Had resuscitation been
an issue in the early minutes of the stroke, and had I known nothing but
what I saw in front of me, I would without hesitation have asked that my
mother’s suffering should have been terminated as quickly as possible,
as she was calling out in a long drawn-out, semi-conscious torment, “No,
no, no.”
However, when the following day she started to come round, and my daughter
and I waited with much trepidation to find out what impact the stroke had
had on a brain already suffering the imposition of Alzheimer’s, we
were amazed when she opened her eyes, uttered, “Ello, ’ello,
’ello,” in a speech pattern familiar to us from the old days,
and found that she had entered a state of quite amazing serenity and peace,
which lasted for the rest of that day. As my daughter and I took it in turn
to stroke her head and talk to her, she replied with disjointed words and
phrases and the three of us experienced a quite unique and extremely rewarding
time of closeness and peacefulness. Of course, when she was suffering her
stroke I did not know that this nirvana was to follow, and the following
day she had returned to her pre-stroke mental state, with considerable periods
of confusion and distress.
A year later, Alzheimer’s was not inflicting the same mental distress
on her. But its effects are often deceptive. The last time I visited before
writing this part of the book, her cognitive faculties seemed to have declined
again, and I thought she would be now completely out of reach of human contact.
After sitting next to her in silence and with her motionless for perhaps
half-an-hour I asked: “Are you asleep?” “No, I was just
thinking,” she responded without hesitation, and to my amazement proceeded
to recount two separate events. I could not understand the story she was
telling me, in which the words “men caught” frequently appeared
in the first, and”‘ex-wife” in the second, but she showed
no distress in telling me them, and took them as seriously as I now take
the reporting of them to you. If the difference between my mother and me
is only one of degree of cognitive ability, who am I to say that she should
be denied life while I carry on?
In some sense, doctors play God throughout our lives. But it is particularly
as we get towards the end of life that some of them seem to feel entitled
to assert that role more vigorously. Resuscitation, however, is not as extraordinary
a thing as some doctors seem to imply. It is not after all resurrection –
not like raising Jesus or Lazarus. One could see it in terms simply of removing
a temporary blockage.
It seems to me that we should act on the Department of Health’s own
declaration that as far as resuscitation is concerned: “Patients (and
where appropriate their relatives and carers) have as much right to be involved
in those decisions as they do other decisions about their care and treatment.”/5/
Approaches towards resuscitation and other kinds of treatment the lack of
which might well result in the patient’s death should be devised to
meet the needs of each individual. It is not enough that doctors should be
guided by general health-trust guidelines: each elderly person should have
his or her own personal resuscitation or other treatment-withholding programme.
This should set out the particular profile considered desirable, specific
not only to the individual but also to their particular needs, which may
vary from time to time – a fact acknowledged by the Department of Health,
which says that the executives of health trusts and health authorities should
ensure that “appropriate supervision arrangements are in place to review
resuscitation decisions”.
Perhaps neglect of this area has been due not only to the relative lack of
concern which society shows to old people, but also to the taboo which surrounds
death. But if we are not to let down our elderly relatives, we need to assert
ourselves over resuscitation and the withholding of other treatments.
REFERENCES
1 BBC Radio 4, File on 4, 8 October 2000
2 Meystre, C. J. N., Burley, N. M. J. and Ahmedzai, S. H. ‘What investigations
and procedures do patients in hospices want? Interview-based survey of patients
and their nurses’, British Medical Journal, 31, 8 November
1997
3 Department of Health, Resuscitation Policy, Health Service Circular
2000/028
4 Decisions relating to Cardiopulmonary Resuscitation: a Joint Statement
from the British Medical Association, the Resuscitation Council (UK) and
the Royal College of Nursing, February 2001
5 See reference 3.
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