SEARCH

SEARCH BY CITATION

Summary

  1. Top of page
  2. Summary
  3. Case history
  4. Discussion
  5. Conclusion
  6. Acknowledgements
  7. References

An elderly woman with dementia presented for repeat surgical management of fractured neck of femur. Although no advance directive had ever been generated, the patient was declared to be a strict Jehovah's Witness by her daughter, who vetoed the transfusion of any blood products. The fracture was managed conservatively but the patient suffered repeated chest infections, from which she died 4 months after admission. This case raised several clinical, ethical and legal issues and generated a spectrum of opinion as to the appropriateness of operative intervention, transfusion and provision of intensive care. We suggest that professional guidelines and the new Mental Capacity Act 2005 do not provide explicit and comprehensive guidance for practitioners. Further deliberation is required to bring about convergence between the law, ethical principles and professional guidelines.


Case history

  1. Top of page
  2. Summary
  3. Case history
  4. Discussion
  5. Conclusion
  6. Acknowledgements
  7. References

An 85-year-old woman presented on a weekend trauma list for intramedullary nailing of a subtrochanteric fractured neck of femur. A dynamic hip screw was in situ for a fracture sustained 3 months previously and she had also suffered a displaced fracture of the left radius and ulna requiring manipulation. Co-morbidity included profound dementia (Abbreviated Mental Test Score of 0/10), a permanent pacemaker, atrial fibrillation and breast cancer, presumed localised and controlled with anti-oestrogen therapy since diagnosis 3 years previously. The patient's daughter, a Jehovah's Witness who also held Power of Attorney, informed staff during the process of consent that her mother, too, was a practising Jehovah's Witness. Although not baptised and never having completed an advance directive or release form, she made it clear that her mother held strong beliefs on the unacceptability of transfusion of any blood product, and was not to be given one even if this resulted in death. Cell salvage was viewed as tolerable only if continuity between collection and transfusion was maintained, and other strategies such as predonation were vetoed. Given the likelihood of significant haemorrhage during a complicated revision procedure, a starting haemoglobin level of 9.9 g.dl−1, and the predicted limited physiological reserve of this patient, death appeared a distinct possibility from surgery without transfusion, but such information did not alter the position of the daughter.

Discussion at senior orthopaedic and anaesthetic levels was unable to resolve whether proceeding on this basis was the appropriate course of action, and requests were made through the on-call managers for a definitive legal opinion. During this process, the site matron documented in the medical records that it would be appropriate for clinicians to proceed surgically and withhold transfusion in line with the daughter's wishes, as this approach had been established for the previous operation. This had been, however, a primary rather than revision procedure, with a higher starting haemoglobin and less advanced co-morbidity. The case was therefore deferred pending the opinion of the Trust's solicitor, which was that, in the face of the daughter's position, a declaration from the Courts would be necessary to legitimise any transfusion. It was also considered that resolution by the Courts would not be achieved promptly, as the surgical procedure was not life- or limb-saving. It was likely that the family would be able to access expert medical opinion supporting the withholding of blood products, and there would be an inevitable delay whilst independent clinicians in the fields of orthopaedics, anaesthesia and psychiatry, instructed by the Courts and all other parties, reviewed the patient. It was considered that the inevitable spectrum of opinion generated would not be conducive to a rapid, incisive, non-contestable ruling by any judge.

The orthopaedic team took the decision at this point to treat the fracture conservatively, having informed the daughter that this did not constitute optimal management from a medical perspective. The patient was put on tibial traction for approximately 10 weeks, during which time she suffered recurrent pneumonia and left lung collapse secondary to mucus plugging. This proved refractory to a range of manoeuvres, excluding tracheal intubation, which was deemed inappropriate, and the patient died just short of 4 months after admission.

Clinical opinion

This case generated considerable debate as to the appropriate clinical and medicolegal course of action, both at the time and in a subsequent audit meeting of 56 anaesthetists of all grades from specialist registrar upwards. A quarter of practitioners favoured operative intervention with blood transfusion as for a standard procedure. Of this group, 20% favoured covert administration peroperatively by blurring the boundaries between salvaged autologous blood and homologous transfusion, on the grounds that the patient could not be harmed by virtue of her dementia and it was also reasonable not to incite anger and antagonism in her daughter. Half would give blood products but would inform the daughter of this course of action, while 30% would give blood, but only with the endorsement of legal advice or the Courts. Of the group that would administer blood, 50% considered it reasonable to offer intensive care if this was required postoperatively.

Half of the discussion group favoured operative intervention with prohibition on transfusion in line with the daughter's position, with 80% of these taking the view that such an undertaking should be on the explicit understanding that any subsequent decompensation would not trigger admission to the intensive care unit.

A further 15% of the group considered that, although a conservative approach was not ideal, it was preferable to the above options. Given the poorer outlook for the patient from this strategy, and the fact that it had been apparently driven by the patient's beliefs, 90% of these felt that any complications should be managed at ward level and not involve an escalation of care beyond antibiotics, physiotherapy and simple supplementary oxygen. The remaining 10% of the overall group took the view that the combination of the fracture, co-morbidity and barriers to appropriate care made death inevitable, and favoured an explicit palliative care approach.

Only 20% of the group, primarily those who would administer blood but only with legal endorsement, would seek legal advice, although 25% considered discussion with their defence societies. A further 20% would discuss the case with a colleague and only 5% considered liaison with the trust's Clinical Ethics Committee, which provides an on-call service.

When presented with the option of informing the patient's daughter of the intention to operate and transfuse in line with normal practice, but allowing her 48 h to generate an injunction against this course of action if she so desired, the responses differed according to the original choices: 70% of those who had intended to give blood overtly would now do so with these new arrangements, but 50% of the group planning covert administration of blood would continue with that strategy. Of those who would operate but not transfuse, 80% were unwilling to adopt this approach, and 50% of those who had originally opted for a conservative approach would now undertake surgery on this basis.

Discussion

  1. Top of page
  2. Summary
  3. Case history
  4. Discussion
  5. Conclusion
  6. Acknowledgements
  7. References

Although professional guidelines for the management of anaesthesia for Jehovah's Witnesses are available [1], these do not include recommendations for the patient with dementia. Reference is made to the unconscious patient, with the advice that where a relative attempts to veto transfusion, they ‘should be invited to produce evidence of the patient’s status as a Jehovah's Witness', but there is no specificity as to what constitutes ‘evidence’ or how differences of opinion should be resolved. There is no position taken on the defensibility or otherwise of the various management options outlined above in the absence of an advance directive, or the criteria for seeking either legal opinion or the involvement of the Courts.

With no definitive guidelines, a spectrum of opinion on the appropriate course of action, and the logistical barriers of a weekend, it is unsurprising that decision-making was problematical. The complex mix of clinical questions, ethical responsibilities and legal obligations that shape professional judgement are explored below.

Clinical considerations

The determination that operative intervention would be associated statistically with the highest likelihood of successful recovery was the reason for listing the patient for the procedure, the starting position for this debate, and the least arguable aspect [2]. Predicting the blood loss and the success of cell salvage manoeuvres was a more difficult undertaking. Speculating on the impact of a fall in haemoglobin concentration was also complex, as dementia prevented any assessment of functional reserve. This patient, however, had significant cerebrovascular and cardiac co-morbidity, which predictably would be adversely affected, even if there was no more significant systemic decompensation. Furthermore, at 85 years of age, the patient would not mount the vigorous haemopoietic response that would ultimately secure recovery from short-term profound anaemia.

The consensus clinical position was that operative intervention with a veto on blood or blood products would have a greater than even chance of death, aggravated by profound anaemia, even if all supportive facets of intensive care were considered appropriate and made available.

Ethico-legal considerations

Capacity

Although, interestingly, the patient denied both being a Jehovah's Witness and having any objection to transfusion, it was accepted by all parties that, by virtue of dementia, she did not have capacity as defined by the Courts [3] and would not regain this.

Best interests

In the absence of capacity, both the law and professional guidelines direct that care be based on ‘best interests’[4]. Although ‘medical best interests’ could be summarised as ‘operate, minimise blood loss, but transfuse if lack of cardiorespiratory reserve became apparent’, as for any patient, a broader definition of best interests must be considered; thus: “‘Best interests’ stretch far wider than ‘best medical interests’ and include factors such as the patient's wishes and beliefs when competent, their current wishes, their general well-being and their spiritual and religious welfare”[5, 6].

Role of the next of kin

It is recommended procedure and indeed reasonable to solicit the views of the next of kin in these circumstances, as they are optimally placed to have knowledge of the patient's values and beliefs. Their opinion cannot be considered determinative, however, when it is directly contrary to medical best interests and is likely to result in death or significant morbidity. The authority of the next of kin is furthermore currently limited, even formal Power of Attorney being restricted to non-medical issues, but this should not be exploited to undermine a personal value, however alien to the medical practitioner's own beliefs. Equally so, an ethical responsibility to the patient should not be subsumed by fear of confrontation, a complaint or indeed litigation by the next of kin. A relative's opinion may not accurately reflect the patient's values and beliefs, and in the absence of a specific advance directive to confirm this position, it is reasonable to seek the perspective of other parties such as the patient's general practitioner. This proved impossible over the weekend, but later contact revealed no documentation on this matter within the records. There was therefore no obvious contradiction to the daughter's opinion, but equally so, no confirmation in the form of baptism or advance directive.

Informed consent

A key difficulty in simply accepting the daughter's position as to her mother's values lay in whether this was in turn a fully informed view, with an understanding of what death from anaemia constituted. Any Jehovah's Witness should be made aware that death is not some sudden defining moment, but a progressive decline, potentially over a prolonged period, characterised by profound weakness and depression, cardiac failure with palpitations, extreme dyspnoea, gross oedema, wound breakdown, recurrent and multisource infections, and diarrhoea from gastro-intestinal failure. A key component of an informed position on refusing blood products also lies in understanding the limitations of intensive care in this scenario, and accepting that such support may be inappropriate. The patient should be made aware that invasive ventilation and inotropic support are not an answer to the underlying problem and often only serve to delay the inevitable death from multisystem failure. Therefore, when considering the patient's best interests, it is reasonable to challenge the informed validity of a veto on transfusion, particularly if expressed by a third party.

An additional philosophical argument for challenging the view lies in the contention that a patient with dementia is no longer the same person with the same values and beliefs as previously [7], and there are no grounds for prematurely terminating that life by withholding blood products unless it was unequivocally expressed as an enduring and informed wish in the event of dementia.

Second opinions and role of the Courts

If it is a considered medical view that operative intervention, with transfusion if required by normal criteria, is in line with the patient's best interests, is it necessary to seek the endorsement of the Courts?

Given that the intention would be to save life, that this course of action was least likely to limit future choices, and that was not contrary to any formal previously expressed wish by the patient, the simplistic answer would be that this approach was lawful, with no obvious requirement for involving the Courts. It cannot be assumed, however, that this position would go unchallenged, legal judgements making it clear that medical opinion is not determinative, with rulings against medical standpoints directed at both maintaining [8] and limiting [9] active support. A key criterion for determining a course of action as lawful in these circumstances would be the extent to which it was a considered opinion. This would demand discussion with colleagues and the Trust's Medical Director at a minimum, which would predictably trigger a legal consultation. Although an eminently reasonable course of action, the status of endorsement by a Clinical Ethics Committee is questionable, given the position of the law: ‘the medical profession will no doubt have views which are entitled to great respect, but I would expect medical ethics to be formed by the law rather than the reverse’[10].

Although it is remote that charges of assault would ever be pursued, and unlikely that any claim of negligence would be successful, a further area of jeopardy is investigation by the regulatory bodies in response to a complaint by the next of kin. In such circumstances, the most robust defence lies in demonstrating consultation with all relevant parties. Therein lies the ethical problem, namely that the inevitable delay of the legal process, as discussed above, compromises the benefits of early surgery, thereby generating the ethical argument that one should proceed without seeking the endorsement of the Courts, a course of action pursued to protect the practitioner rather than the patient. A proposal to invite the patient's daughter to seek a court injunction if she disagreed with the plan to operate and transfuse if required could also be construed in the same light.

The issue of seeking external opinion or transferring care to a team prepared to conform to the daughter's wishes is similarly highly vexed. This was not promoted in this case, nor requested by the daughter. Whilst access to a second opinion is an undeniable right, it would arguably be unethical to transfer care to achieve a course of action, namely surgery without transfusion, which could predictably result in the patient's death, once this process was reasonably considered not to be in the patient's best interests.

Secondary ethico-legal issues

Provision of intensive care

If this patient were to deteriorate in association with critical anaemia, regardless of whether surgery had been undertaken, and transfusion was withheld in line with the relative's position, provision of intensive care support may well be considered inappropriate. The background dementia would, in the event of survival, make compliance with any treatment and weaning strategy problematical, irrespective of the ethical debate as to whether life only has value if the individual is capable of valuing their life. A more fundamental argument is that intensive care can only compensate for profound anaemia as a temporary support measure if the patient is capable of mounting a reasonable haemopoietic response. This would not be a viable consideration in this case. It can be argued therefore that if transfusion were to be withheld, it would also be in the patient's best interests to withhold intensive care in the event of decompensation, thereby avoiding the ultimately futile harm and discomfort of interventions. These deliberations avoid reference to the ethical principle of justice, whereby a scarce and expensive resource should arguably not be expended on an individual who has refused conventional treatment and thereby created such a need. This approach is in line with other areas of medical treatment of Jehovah's Witnesses [11] and it is noted that no reference is made to these difficult ethical issues within the available professional guidelines.

Implications of the Mental Capacity Act 2005

The new statutory framework for the management of mentally incapacitated adults comes into force in 2007 [12] and the implications for anaesthesia and critical care have been described [13]. The problems identified within this case illustrate the need for reform but it can be argued that those same problems would remain unresolved, leaving ongoing uncertainty for practitioners in this area. Individuals may choose to generate an advance directive refusing life-sustaining treatment, but this must be written, specific, signed and witnessed to be valid. Authority for decision-making may be invested in others through a Lasting Power of Attorney, but this will not include refusal of life-sustaining treatment unless the patient had specifically intended this, using the same criteria as the advance directive. In the absence of an advance directive or a nominee with Lasting Power of Attorney, the reforms allow for the selection of a court-appointed deputy (CAD) for proxy decision-making. The criteria for these appointments are not specified, but such a deputy will not have the authority to refuse life-sustaining treatment. It can be seen therefore that even if this patient had presented after the new Act comes into force, the same ethical, legal and logistical difficulties would still arise.

Conclusion

  1. Top of page
  2. Summary
  3. Case history
  4. Discussion
  5. Conclusion
  6. Acknowledgements
  7. References

This case highlights the complex problems facing anaesthetists and intensivists as they attempt to meet the healthcare needs of an increasingly elderly population, with significant co-morbidity and dementia. Such patients are unlikely to have fully informed and highly specific advance directives or to have designated an individual with Lasting Power of Attorney with the specificity necessary for valid refusal of life-sustaining treatment. Although advance directives are more likely within the Jehovah's Witness community, it can still be argued that there is less than complete understanding of what death from anaemia constitutes or of the limitations of intensive care, sufficient to validate such a directive. Guidelines from the Association of Anaesthetists [1] refer to consideration of elective ventilation and even hyperbaric oxygen therapy without defining the circumstances in which these would be appropriate. Debate on such issues should be an integral part of any advance directive refusing blood products. Whilst decision-making for the adult lacking capacity may have been formalised under the new Mental Capacity Act 2005, it would appear that this does not address certain ethical aspects of care or comprehensively specify when legal process should be invoked. Given these problems, in the context of the complete spectrum of clinical opinion as to the appropriate course of action, it would be helpful to have convergence between the law, ethical principles and professional guidelines, thereby ensuring the protection of all parties.

Acknowledgements

  1. Top of page
  2. Summary
  3. Case history
  4. Discussion
  5. Conclusion
  6. Acknowledgements
  7. References

Consent for publication of this debate has been granted by the patient's daughter.

References

  1. Top of page
  2. Summary
  3. Case history
  4. Discussion
  5. Conclusion
  6. Acknowledgements
  7. References
  • 1
    Association of Anaesthetists of Great Britain and Ireland. Management of Anaesthesia for Jehovah's Witnesses, 2nd edn. London: AAGBI, 2005.
  • 2
    Bottle A, Aylin P. Mortality associated with delay in operation after hip fracture: observational study. British Medical Journal 2006; 332: 94751.
  • 3
    Re MB 1997 2 FCR, 541.
  • 4
    Re A 2000 1 FLR, 549.
  • 5
    Department of Health. Good Practice in Consent. HSC 2001/023. London: DoH, 2001.
  • 6
    General Medical Council. Seeking patients' consent: the ethical considerations. London: GMC, 1998.
  • 7
    Dworkin R. Life's Dominion: an Argument about Abortion, Euthanasia, and Individual Freedom. New York: Vintage Books, 1994.
  • 8
    Ms B v An NHS Hospital Trust, 2002. EWHC 429 (Fam).
  • 9
    Bird S. Parents win right for daughter to be revived. The Times 22 October 2005: p. 13.
  • 10
    Airedale NHS Trust v Bland, House of Lords, 1993 A.C. 789 (per Lord Hoffmann at p834).
  • 11
    Bramstedt KA. Transfusion contracts for Jehovah's Witnesses receiving organ transplants. ethical necessity or coercive pact? Journal of Medical Ethics 2006; 32: 1935.
  • 12
    Mental Capacity Act 2005. http://www.opsi.gov.uk/acts/acts2005/20050009.htm[accessed 5 May 2006].
  • 13
    White SM, Baldwin TJ. The Mental Capacity Act 2005 – implications for anaesthesia and critical care. Anaesthesia 2006; 61: 3819.