Patients' autonomy and values conflict with the
responsibilities of clinicians
Ms B, as she was called in court and in the media, was a 43 year old
professional woman who in 1999 had a haemorrhage in acavernous
haemangioma in her upper spinal cord. After an almostcomplete
recovery she had a re-bleed in February 2001, which renderedher
quadriplegic and dependent on artificial ventilation. Specialistswho
reviewed her all agreed that she had a negligible chance of
substantial recovery, and she was advised to consider specialist
rehabilitation. Ms B went to great lengths to gather information
about her prognosis. She remained adamant that living on a ventilator
would be intolerable to her because of the level of dependenceon
others and the lack of control over her own body she wouldhave, and
she requested to have her ventilation discontinued.The clinicians
treating her felt unable to carry out her wishes,and Ms B eventually
took to court the NHS Trust treatingher.
Dame Elizabeth Butler-Sloss judged that Ms B was indeed competent to decide
on her treatment, and therefore her decisionsabout her treatment,
whatever they were, must be respected.1
The judgment reviewed precedents for this, including the judge'sown
previous statement that "a mentally competent patient hasan absolute
right to refuse to consent to treatment for any reason,rational or
irrational, or for no reason at all, even where thatdecision may
lead to his or her own death." The same principlewas contained in a
1999 BMA report and is included in guidelinescurrently being drafted
by the General Medical Council. 23 The judgment also emphasised that "the right of the competentpatient to request cessation of treatment must prevail over the
natural desire of the medical and nursing professions to try tokeep
heralive."
When a patient makes a decision, especially one with serious consequences,
which so clearly goes against professional advice,this alone might
lead a clinician to doubt his or her competence.However, this view
of clinicians is clearly tautological and goesagainst the legal
principle above. Competence must be establishedinstead on the basis
that the patient is capable of assimilatingand understanding
information about her condition, appreciatesthe personal relevance
of this information, is capable of discussingit with others, and is
able to form judgments by weighing up theinformation she hasacquired.
In this case, it was clear that the patient had based her decision
predominantly on her valuespersonally
determined weightsassigned to one course of action relative to
others. In essence,she valued the continuing life she faced,
particularly being dependenton others, as worse than death. Doctors
must recognise the differencesbetween values and knowledge.
Patients' values have tended tobe neglected in considerations of
their competence.4 A patient'svalues
cannot be accommodated by insisting on offering the individualmore
facts to assimilate, but by acknowledging and trying to understand
the person's experience of illness and treatment.5
Values can,and often do, alter with changing circumstances and
experience.6What matter here are the
individual's values at the time the decisionneeds to be made. It was
argued that Ms B could not reach a validdecision about
rehabilitation until she had experienced it.7However, it is clearly illogical to assert that valid consent
is only possible inretrospect.
Instances were cited, both in court and in the media, where individuals faced
with the same decision as Ms B opted for rehabilitation,and later
said that they were pleased to have done so. UnlikeMs B, these
people must have given consent to continuing ventilation,and were
therefore at the very least ambivalent, or had reservedjudgment,
about the anticipated quality of their lives after rehabilitation.To
extrapolate from such anecdotes to Ms B's circumstances wouldbe
invalid. Had she opted to start rehabilitation, Ms B mightover time
have changed her values. However, testing whether thismight happen
would be illegal as well as unethical. With acceptanceof patients'
autonomy comes the inevitable uncertainty whetherthe patient might
have changed her viewlater.
Managing such situations can be very distressing for many clinicians, who see
their work focused on the preservation of life.There will be other
instances, as here, where clinicians feelunable personally to carry
out a patient's request to withdrawfrom life sustaining treatment.8
Where this occurs, the presentjudgment indicates that clinicians
have a duty to find someoneelse to carry out the patient's wishes.1
In the first instance,it may often be helpful to seek independent
assistance and advicefrom appropriate medical experts, to clarify
the differences inthe views of patient and clinicians, and to help
in devising amanagement plan. This consultation process should
involve thepatient as fully as possible. It is only after such steps
havefailed that an application to the high court should be
considered.In England and Wales, the official solicitor is available
to offeradvice at anystage.
Decisions to withdraw treatment are not uncommon in some clinical settings.
In palliative care, they are the norm. They arecommonly reached by
mutual agreement between the patient and clinicians,and treatment
focuses on managing the process of dying, ratherthan sustaining
life. The increasing use of technologies capableof sustaining life
means that such decisions are likely to becomemore common, but also
more complex.9 When a patient choosesto
withdraw from life sustaining treatment, helping that personachieve
a "good" death is a legitimate goal for healthcare professionals.9From the patient's perspective, key considerations are adequate
pain and symptom management, avoiding inappropriate prolongationof
dying, achieving a sense of control, relieving burden, and
strengthening relationships with loved ones.10
Tom Sensky, reader in psychological medicine.
Imperial College of Science, Technology and Medicine, West Middlesex
University Hospital, Isleworth, Middlesex TW7 6AF
t.sensky@ic.ac.uk
Acknowledgments
TS was instructed as an independent expert in this case by the official
solicitor, and made personal assessments of Ms B,as well as studying
Ms B's medical records and other backgroundinformation. He had her
permission to write up thecase.
For valuable discussions about the case, I thank the consultant psychiatrist
who gave evidence at the hearing (a court injunctionprevents the
identification of the psychiatrist); Laurence Oates,official
solicitor and public trustee; and Beverley Taylor ofthe official
solicitor'soffice.
Sprangers MAG, Schwartz CE. Integrating response shift into
health-related quality of life research: a theoretical model. Soc Sci Med
1999; 48: 1507-1515[Medline].
Patterson DR, Miller-Perrin C, McCormick TR, Hudson LD.
When life support is questioned early in the care of patients with
cervical-level quadriplegia. N Engl J Med 1993; 328: 506-509[Full
Text].
Edwards MJ, Tolle SW. Disconnecting a ventilator at the
request of a patient who knows he will then die: the doctor's anguish.
Ann Intern.Med 1992; 117: 254-256.
Cook DJ, Giacomini M, Johnson N, Willms D. Life support in
the intensive care unit: a qualitative investigation of technological
purposes. Canad Med Ass J 1999; 161: 1109-1113.
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