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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 a cavernous haemangioma in her upper spinal cord. After an almost complete recovery she had a re-bleed in February 2001, which rendered her quadriplegic and dependent on artificial ventilation. Specialists who 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 dependence on others and the lack of control over her own body she would have, 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 treating her.
Dame Elizabeth Butler-Sloss judged that Ms B was indeed competent to decide on her treatment, and therefore her decisions about her treatment, whatever they were, must be respected.1 The judgment reviewed precedents for this, including the judge's own previous statement that "a mentally competent patient has an absolute right to refuse to consent to treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to his or her own death." The same principle was contained in a 1999 BMA report and is included in guidelines currently being drafted by the General Medical Council. 2 3 The judgment also emphasised that "the right of the competent patient to request cessation of treatment must prevail over the natural desire of the medical and nursing professions to try to keep her alive."
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 goes against the legal principle above. Competence must be established instead on the basis that the patient is capable of assimilating and understanding information about her condition, appreciates the personal relevance of this information, is capable of discussing it with others, and is able to form judgments by weighing up the information she has acquired.
In this case, it was clear that the patient had based her decision
predominantly on her values
personally
determined weights assigned to one course of action relative to
others. In essence, she valued the continuing life she faced,
particularly being dependent on others, as worse than death. Doctors
must recognise the differences between values and knowledge.
Patients' values have tended to be neglected in considerations of
their competence.4 A patient's values
cannot be accommodated by insisting on offering the individual more
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.6 What matter here are the
individual's values at the time the decision needs to be made. It was
argued that Ms B could not reach a valid decision about
rehabilitation until she had experienced it.7
However, it is clearly illogical to assert that valid consent
is only possible in retrospect.
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. Unlike Ms B, these people must have given consent to continuing ventilation, and were therefore at the very least ambivalent, or had reserved judgment, about the anticipated quality of their lives after rehabilitation. To extrapolate from such anecdotes to Ms B's circumstances would be invalid. Had she opted to start rehabilitation, Ms B might over time have changed her values. However, testing whether this might happen would be illegal as well as unethical. With acceptance of patients' autonomy comes the inevitable uncertainty whether the patient might have changed her view later.
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 feel unable personally to carry out a patient's request to withdraw from life sustaining treatment.8 Where this occurs, the present judgment indicates that clinicians have a duty to find someone else to carry out the patient's wishes.1 In the first instance, it may often be helpful to seek independent assistance and advice from appropriate medical experts, to clarify the differences in the views of patient and clinicians, and to help in devising a management plan. This consultation process should involve the patient as fully as possible. It is only after such steps have failed that an application to the high court should be considered. In England and Wales, the official solicitor is available to offer advice at any stage.
Decisions to withdraw treatment are not uncommon in some clinical settings.
In palliative care, they are the norm. They are commonly reached by
mutual agreement between the patient and clinicians, and treatment
focuses on managing the process of dying, rather than sustaining
life. The increasing use of technologies capable of sustaining life
means that such decisions are likely to become more common, but also
more complex.9 When a patient chooses to
withdraw from life sustaining treatment, helping that person achieve
a "good" death is a legitimate goal for healthcare professionals.9
From the patient's perspective, key considerations are adequate
pain and symptom management, avoiding inappropriate prolongation of
dying, achieving a sense of control, relieving burden, and
strengthening relationships with loved ones.10
Tom Sensky
Imperial College of Science, Technology and Medicine, West Middlesex
University Hospital, Isleworth, Middlesex TW7 6AF
t.sensky@ic.ac.uk
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 background information. He had her permission to write up the case.
For valuable discussions about the case, I thank the consultant psychiatrist who gave evidence at the hearing (a court injunction prevents the identification of the psychiatrist); Laurence Oates, official solicitor and public trustee; and Beverley Taylor of the official solicitor's office.
| 1. | Ms B v An NHS Hospital Trust. 2002. EWHC 429 (Fam). |
| 2. | British Medical Association. Withholding and withdrawing life-prolonging medical treatment: guidance for decision making. London: BMJ Books, 1999. |
| 3. | General Medical Council. Withholding and withdrawing life-prolonging treatments: good practice in decision-making. London: GMC, 2002. |
| 4. | Charland LC. Appreciation and emotion: theoretical reflections on the MacArthur treatment competence study. Kennedy Inst Ethics J 1999; 8: 359-376. |
| 5. | Atkins K. Autonomy and the subjective character of experience. J Appl Philos 2000; 17: 71-79[Medline]. |
| 6. | 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]. |
| 7. | 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]. |
| 8. | 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. |
| 9. | 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. |
| 10. | Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients' perspectives. JAMA 1999; 281: 163-168[Medline]. |
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