Detail from Andrus, by Franz Kline, an Abstract Expressionist who died from rheumatic heart disease aged 51. Andrus was the name of his cardiologist. On display at the Royal Academy, London until 2nd January 2017.
The story covered by the BBC and several newspapers about 71-year old Nina Adamowicz, who asked to have her pacemaker turned off in the context of advanced heart failure, caused a flurry of interest last week. There was concern, quickly put to bed by Dignity in Dying among others, that deactivating the device amounted to assisted suicide.
Most, I think all, of the doctors I observed commenting on social media failed to see an ethical problem here. The patient had mental capacity. All patients have a right not to receive treatment. A pacemaker is ‘treatment’. The patient asked for it to be turned off. That’s that.
Said to be the first case of its kind in the UK, the scenario is not novel, and cardiologists in the US have considered this dilemma very carefully in recent times. A consensus view produced by an expert panel (2010) was that,
‘Legally and ethically, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.’
‘The right to refuse or request the withdrawal of a treatment is a personal right of the patient and does not depend on the characteristics of the particular treatment involved (i.e. Cardiovascular Implantable Electronic Devices – CIEDs).’
This is clear and makes sense, but as in all aspects of medicine, the reality can be more challenging, both for patients and their doctors. Certainly for Ms Adamowicz and her cardiologist it was not straightforward, because despite her consistently stated desire (clearly and movingly related in this 13 minute interview on radio 4), she had to await the outcome of a specially convened ethics committee.
Most de-activation requests concern implantable defribrillators (ICDs), devices that fire electric shocks when the heart arrests or comes close to it. Switching these off in the context of approaching, natural death appears uncontroversial, as patients can suffer unnecessarily if they experience such shocks in their final minutes or hours.
For patients whose heartbeats depend on constant impulses from their pacemakers, the situation is different. There is a possibility that their heart will stop as soon as the device is deactivated. The connection between medical intervention and death is stronger, and however robust the ‘legal and ethical’ defense for such an act, doctors are bound to be wary of putting themselves in such a situation.
I have not been able to confirm Ms Adamowicz’s cardiological diagnosis, but in her own words, she was indeed ‘100%’ pacemaker dependent. At night she would often feel her heart slowing to a dangerous rate, she felt herself beginning to slip away, and then the device would kick in and bring her back. Complete dependence would explain why she ‘described her body as feeling heavy and [ ] a little nauseous’ after the twenty-minute procedure to turn it off in October 2015.
In the largest descriptive study published in JAMA, only 6 of the 150 terminally ill patients with CIEDs fit this ‘dependent’ category. However, patients whose underlying heart rate was too slow survived for a significantly shorter time than those who were receiving ‘tachycardia therapy’ – median zero days vs 3 days. The type of underlying rhythm problem therefore matters, and physicians should be aware that their patients could die quickly.
Interestingly, in this study, less than half (43%) received a palliative care consult, and only 3% were subject to a clinical ethics review.
This fascinating study led to a New York Times article which highlighted the discomfort some cardiologists feel when asked to switch off devices in the ‘pacemaker dependent’. A survey (abstract only) of 787 professionals involved in deactivation found that more were comfortable ‘with personally deactivating’ with ICDs than a pacemaker (56.7% vs 34.4%), but that a minority equated the intervention to euthanasia (11%).
This minority opinion is worth examining. Are those doctors being squeamish? Are they placing their discomfort, moral instincts or religious beliefs over patients’ autonomy?
A case study published by The Centre for Bioethics and Human Dignity described a 69-year old lady with heart block who was pacemaker dependent. She decided to have her device switched off – not in the context of advancing or terminal illness, but because she no longer wanted to live. She was clearly depressed, and it was even suggested that she had not wanted the pacemaker implanted in the first place. Although under the impression that her heart would stop immediately, it was clarified that,
‘Though she demonstrates no intrinsic rhythm when the rate of the pacer is turned down to 30 beats/minute on testing, most patients do develop some rhythm after several seconds of not beating at all.’ So, death would not be immediate.
Both the experts responding to this scenario find it challenging, essentially because the patient is not dying. The first emphasises the need to exclude or treat depression, as it may be impairing decision making, but concludes,
‘turning a pacemaker off may be ethically justified if 1) continued treatment is inconsistent with patient goals, 2) death is imminent from either cardiac or non-cardiac medical complications, and 3) the patient is refusing or has refused other forms of life-sustaining treatment.’
‘…others believe that, because of implantation into the chest cavity and the necessary wiring to an internal section of the heart, an implanted pacemaker becomes an integral part of the cardiovascular system, similar to an aortic graft or a cardiac valve replacement. Using this latter conceptualization, it becomes ethically problematic to render a pacemaker non-functional.’
The second expert is even more cautious,
‘While it would be permissible for a patient to refuse pacemaker insertion, it is an unresolved question whether it is permissible to shut off a pacemaker which is sustaining life without causing intolerable symptoms.
‘Some would argue that it is permissible because it is artificial technology, comparable to a ventilator. Most would argue that it is not permissible because the pacemaker, once inserted, becomes part of the person, and shutting it off is akin to assisting in a suicide.’
So, what looked like a very uncontroversial dilemma at first glance last week, is perhaps not so straightforward. Whereas decisions to stop ventilators or withdraw artificial feeding have been subject to legal scrutiny (eg. Miss B, Tony Bland), the legal basis for the deactivation of fully internalised prostheses or devices remains a grey area. If the patient’s wishes are known, as in the case of Nina Adamowicz, decision-making is much easier. A point emphasised in the consensus statement referred to above is that those implanting cardiac devices should have ‘should have a clearly defined process to withdraw therapies‘, ie. they must talk to their patients about it at the outset, and again if their health begins to deteriorate. As ever in optimal end of life care, it’s about frank conversations taking place before crisis begins to impair the capacity for communicating a person’s wishes.
4th collection of posts, click image to explore