Classic cases revisited: Mrs Janet Tracey,resuscitation and the importance of good communication

Abstract

The prevalence of inappropriate care, defined as actions contrary to personal and professional beliefs, is high. This is a reflection of the reluctance of the society at large to acknowledge the biological certainty that is death. The case of Mrs Janet Tracey illustrates importance of good communication at the end of life, and the difficulties associated with making of DNACPR decisions. The case brings together two bioethical perspectives on the relationship between the patient and the physician namely the rights based approach, as emphasised by the Article 8 of the European Convention on Human Rights and the bioethical principles approach ephasising autonomy. In doing so it creates a medico-legal landmark for all those involved in management of the end of life.

Introduction

The prevalence of inappropriate care, defined as actions contrary to personal and professional beliefs, is high; up to 27% of health care staff in intensive care units (ICUs) perceive that inappropriate care takes place. ¹ Such circumstances arise as a consequence of diagnostic uncertainty, poor communication, defensive practice and differences in religious or cultural backgrounds. Perceived appropriateness of interventions such as resuscitation differs significantly between healthcare professionals and patients and families, with patients and their relatives being more keen on life-prolonging interventions, without consideration being given to the associated quality of the saved life.^2,3 For example, patients with lung cancer have a high mortality when admitted to ICU. ⁴ The need for organ support and concomitant sepsis usually preclude oncological interventions such as chemotherapy and radiotherapy. Resuscitation of a deteriorating patient with lung cancer may therefore be deemed futile or inappropriate. Do not attempt cardiopulmonary resuscitation (DNACPR) decisions are very emotive and may seem to the patient and the family as an act of giving up. Rather than not appropriate, the act may be viewed by the family or the patient as considered not worthwhile. This, in the absence of good communication that would reflect respect for patient’s autonomy, may precipitate conflict. The case of Janet Tracey ⁵ offers a salutary example of the above issues. The case also highlights the reluctance of the society at large to acknowledge the biological certainty that is death and illustrates poor context specificity of DNACPR decisions. This is acknowledged in a recent Joint Statement by the British Medical Association (BMA), Resuscitation Council UK and the Royal College of Nursing. ⁶

Case report

Janet Tracey was 63 years old and worked as a care home manager. On 5 February 2011, she was diagnosed with lung cancer, with her life expectancy estimated to be 9 months. Two weeks later, she was involved in a road traffic accident, which resulted in a cervical spine fracture and a transfer to a neuro-critical care unit. She was ventilated in the context of chronic respiratory problems complicated by pulmonary sepsis. An attempt at weaning took place but was unsuccessful. The oncologist’s opinion was that the ‘best case scenario was a life expectancy of a few months’ but this would be reduced in the context of her pneumonia and immobility. The patient was able to communicate by means of a writing pad and indicated her willingness to persevere with treatments available. This has been described as a wish ‘to receive full active treatment’. The plan was to wean her off the ventilator. The question of resuscitation was raised, and given the potential for irremediable respiratory failure, a decision was made by a consultant intensivist to issue a DNACPR notice. The patient was subsequently successfully weaned from the ventilator. When the patient’s daughter became aware of the DNACPR notice, she was reportedly ‘horrified’. The notice was removed as per the patient’s wish and the wish of the family. The patient, now competent, refused to discuss resuscitation. She refused to discuss her care and prognosis with the palliative care team. Even more, it was later recorded that she felt ‘badgered’ by the effort of the medical team to discuss prognosis and the end of life issues. On 3 March, Mrs Tracey’s condition started to deteriorate. Another discussion took place, and a second DNACPR order was issued with the agreement from the family. She died on 7 March 2011. David Tracey, husband of the deceased decided to pursue a claim against the NHS Trust involved and the Secretary of State for Health for the breech of Article 8 of the European Convention on Human Rights. The claim against the Trust was ‘because in imposing first notice, it failed adequately to (a) consult Mrs Tracey or members of her family; (b) notify her of the decision to impose the notice; (c) offer her a second opinion; (d) make its DNACPR policy available to her; and (e) have a policy, which was clear and unambiguous’. ⁵ The claim against the Secretary of State was that Article 8 was breeched by failing to publish a national guidance that would standardise the approach and provide clarity to DNACPR decisions.

Article 8 and the DNACPR notices

Despite much progress in the field of resuscitation, the reported survival to discharge after in-hospital cardiac arrest is only 17%. ⁷ Even more tellingly, mortality after cardiac arrest while being treated in the ICU (where extensive skills and resources are present) is in excess of 50%, with the highest mortality present amongst neurological patients. ⁸ Indeed, presumably in recognition of the terminal nature of some pathologies, a majority of deaths on ICU are preceded by withdrawing or withholding treatments. ⁹ Yet to a layperson, resuscitation is synonymous with ‘life saving’. The language associated with DNACPR orders gives an impression of abandonment, of the act of giving up, or even of ending a loved one’s life. The traditionally used word ‘order’ suggests a unilateral, paternalistic decision. While there is a professional imperative to err on the side of life enshrined in the General Medical Council (GMC) Guidance, ¹⁰ doctors, both legally and ethically, are not obliged to provide treatments that are of no benefit.^10,11 Unfortunately, benefit and futility remain subjective and difficult to define. A question whether it is ‘worthwhile’ to resuscitate is a value judgement rather than a matter of physiological probability. Decisions based on value judgements may sometimes contradict what may be considered common sense, yet it is the expression of autonomy that is at the heart of the matter. It is that matter of autonomy that is brought to bear on the case through Article 8 of the European Convention of Human Rights, echoed in the Human Right Act of 1998 (incorporated into UK law in 2000). Article 8 provides the right to respect for private and family life. The scope of issues addressed by Article 8 of the Convention is quite broad and has been reviewed in the judgment concerning Diane Pretty. ¹² The GMC also advises familiarity with the Human Rights Act 1998. ¹⁰ Article 8 covers multiple issues such as ‘physical and psychological integrity of a person’, social identity, sexuality or sexual orientation, the right to personal development and the right to establish relationships with other human beings. Its use in medicine and psychiatry has been recently reviewed. ¹³ In the judgement concerning Janet Tracey, Lord Justice Ryder stated: ‘The duty to consult is integral to the procedural obligation to ensure effective respect for the article 8 right, without which the safeguard may become illusory and the interest may not be reflected in the clinical judgement being exercised. That interest is the autonomy, integrity, dignity and quality of life of the patient. It is accordingly critical to good patient care’. [para 95]. ⁵ Lord Dyson refers to the 2007 version of the Joint Statement by the BMA, Resuscitation Council UK and The Royal College of Nursing on decisions relating to resuscitation. This guidance has been updated taking into account the judgment concerning Mrs Janet Tracey. Within we read: ‘For the patient with capacity there should be open dialogue and shared decision-making between the patient and professionals, unless the patient declines any such discussion […] Prolonging life is not always beneficial. The courts have confirmed that it is lawful to refrain from an attempt at CPR on the basis that it would not be in the person’s best interests. […] The patient should be invited to discuss the risks and benefits of CPR in order to reach an agreed decision on whether or not it should be attempted. Nevertheless, a clinician cannot be forced to perform any intervention that she or he considers to be harmful or against a person’s interests. […] The duty to protect life must be balanced with the obligation not to subject the person to treatment that they would regard as inhuman or degrading.’ ⁶ This very much reflects the judgment. Lord Dyson noted: ‘I should emphasise that the claimant in the present case is not complaining about the substantive decision to withhold CPR. It is about aspects of the procedure which led to the making of the decision’ [para 43] ⁵ and also ‘There need to be convincing reason not to involve the patient’ [para 53]. We can see that it is not the decision per se, but how it is arrived at and communicated to the patient that is the issue. Master of Rolls eventually concluded the judgment – ‘I would therefore grant a declaration against the Trust that it violated Mrs Tracey’s article 8 right to respect for private life in failing to involve her in the process which led to the first [DNACPR] notice’ [para 88]. ⁵

Communication at the end of life

Patient involvement in decision making in the context of critical illness is rare. Patients often lack capacity, and decisions are made on the ‘best interests’ basis. In a large European cohort, only 2% of patients were involved in their end-of-life decision making. ¹⁴ Similarly in the French LATAREA cohort of 7309 ICU patients, limitation occurred in 807 patients and only three patients (0.5%) participated in the decision making. ¹⁵ In the setting of the accident and emergency department, only 8.2% of 1907 patients were considered to be able to participate in end-of-life decision making, and of those, only 31.8% were actually involved in the discussion. ¹⁶

Communication in the context of critical illness and imminent death is not easy. Economy with the truth arising from uncertainty can lead to anxiety, fear and unrealistic expectations. Equally, attempts at shielding patients from the truth may alienate them from their environment and from their loved ones by creating a communication barrier (as everyone knows, but do not say they know, thus preventing emotional interactions). Senior clinicians may deem death as a failure of their art, and young doctors may lack the skills at effective communication. Patients do not like to confront their mortality ¹⁷ and desire for the CPR differs between healthcare professionals, patients and families.^2,3 Finally, the portrayal of cardiopulmonary resuscitation by the media tends to be unhelpful and unrealistic. There is lot to be gained by advance care planning leading to better management of end of life and better mental health outcomes for the surviving family members. ¹⁸ In Mrs Tracey’s case, a short interval between the initial diagnosis of cancer and a potentially life-ending admission to ICU would have precluded psychological adjustment and any attempts at advance care planning.

In the acute setting, the over-reaching principle of sanctity of life demands resuscitation unless it is inappropriate or refused. Unfortunately, in most situations, the onus remains on the physician to initiate the discussion about DNACPR or any other limitation of treatment. Psychologically, the task may seem daunting, given the recommendation that ‘Physicians should seek a nuanced understanding of the patient’s values and expect that patients in medically similar circumstances may choose differently’. When recommending against CPR ‘physicians should approach such patients or their surrogates with a presumption against providing CPR but also remain attentive when discussing the patient’s values and goals for unique personal, familial, religious, or cultural factors that might make an attempt at CPR unusually beneficial’. ¹⁹ It may be important to consider the language of the DNACPR discussion. A more positive ‘allow natural death’ (AND) ²⁰ or ‘allow dignified death’ (ADD) ²¹ acronyms have been suggested instead of the negative ‘do not attempt resuscitation … ’. Still, the discussion should take place with the patient and, if not possible, with the next of kin. British Medical Association guidance, revised in 2014 and taking into account the case of Mrs Tracey states: ‘Consulting with those close to patients in these circumstances is not only good practice but is also a requirement of the Human Rights Act (Articles 8 – right to private and family life and 10 – right to impart and receive information), and is ordinarily a requirement of the Mental Capacity Act 2005 (England and Wales), and the Adults with Incapacity (Scotland) Act 2000’. ⁶ In UK, unless a relative has Lasting Power of Attorney under the Mental Capacity Act, surrogate decision making is not legal. Surrogate decision making is fraught with problems, and it has been shown that patient-designated surrogate decision makers predict patient’s wishes incorrectly in one third of cases. ²² The ICU team may choose many strategies to ensure effective management of end-of-life situations including the existence of an end-of-life policy, the use of multi-disciplinary conferences, second opinions and, if available, the opinions of a clinical ethicist or ethics committee. Involvement of the nursing staff is important, and a marker of quality of care ²³ and the lack of their voice in the judgment concerning Janet Tracey seems a surprise. Bereavement should be actively managed. Written information may improve psychiatric and psychological outcomes of the bereaved. ²⁴ Sometimes, the availability of direct referral of the family member(s) to a specialist counsellor may be useful.

The case against the Secretary of State

The case against the Secretary of State concerned a lack of national legislation. The case was dismissed with the Court arguing that the national policy is to encourage decision making at a local level. ⁵ Examining other jurisdictions, we find that legislations regulating end-of-life management are possible. For instance, introduced in France on 22 April 2005, so-called Leonetti’s Law (Law 2005–370) authorises the withholding and withdrawal of treatment when it appears to be ‘useless’. ²⁵ The law sanctions the principle of double effect and makes pain relief a fundamental patient right. The law focuses on preservation of dignity and avoidance of unnecessary treatments. The Law has been reviewed in the context of ICU and specifically concerning communication. Article 5 of this law has been translated as ‘When a person is not in a condition to express their will, treatment limitation or cessation that could endanger their life cannot be realised without first respecting the collegial procedure defined by the code of medical ethics and without consulting the trusted person or the family or, failing this, one of their close relations and, if appropriate, the advance directives of the person. The motivated decision to limit or discontinue treatment is registered in the medical record’. The statement deserves further explanation, which is provided by the authors. A trusted person is ‘not a surrogate decision-maker because the burden of medical decisions is thought to remain with the physician … the trusted person is rather a witness who reports a patient’s point of view and wishes’ and collegial procedure calls for independent opinion: ‘The decision shall be reached by the doctor treating the patient, after consultation with the care team if there is one and in concordance with the opinion of at least one other doctor, called in as a consultant. The motives for the opinion shall be made explicit’. ²⁵ In the United States, Federal Law includes Patient Self-Determination Act, which was introduced in 1990. The Act serves to affirm patient rights including the right to facilitate their own health care decisions, the right to accept or refuse medical treatment and the right to make advance health care directives. Specifically, it demands that the provider or organisation is required to provide written information on their rights under state law to make decisions concerning medical care to individuals affected. ²⁶ The Janet Tracey judgement serves to establish legal framework in English law that binds autonomy to patient’s rights. It also highlights the need to make information available to patients on which their decisions can be based. Lord Dyson commented that ‘no doubt all NHS Trusts will take note of this litigation and take account of the outcome of the appeal … It is not self-evident that a central mandatory policy would necessarily be more effective’ [para 87]. ⁵ He has thus indicated that local policies concerning DNACPR orders should exist and should be accessible to patients and families. The Trust involved has responded quickly to criticisms concerning accessibility of policies concerning treatment options and made them available through its website and as a leaflet.

Conclusions

The case of Janet Tracey has caused some unease amongst the intensive care community. I believe that any anxiety is unfounded. The decision of whether to provide any given treatment, including CPR, rests with the physician. The case highlights a clear need for good communication and patient involvement whenever possible. This of course is subject to the presence of capacity. In dealing with the family or the patient representatives, there is a need for transparency and candour. Consideration should be given to shared decision making, in at least reaching an understanding of patient’s wishes, preferences and values held dear. The case of Janet Tracey stands at the intersection of two bioethical views of health care. Those are the rights-based approach, as emphasised by the focus on the Article 8 of the European Convention on Human Rights and the approach based on the four bioethical principles of autonomy, beneficence, non-maleficence and justice. The judgement in this case will serve as a legal beacon for the future and, as such, should be noted by all involved in managing the end of life.