Tara writes: For almost all of us, everything about dying is fraught, even when the person involved has ‘had a good innings’, a happy life, is ready to go and faces a peaceful death. We live, most of us, in a death-averse culture that means, though we see celluloid and digital death with frequency, most often the first person we see dying or dead is someone dear to us. The process of actively dying, the signs that herald immanency, even the logistics of the aftermath, are new and worrying for many people. As a nurse I’ve had the responsibility and privilege of assisting people through these processes more times than I can count or remember, always bearing in mind that what is so familiar to me is frightening and overwhelming to my patient and their loved ones.
As well as a nurse I have been an academic, with post-grad qualifications in health ethics and social health. My specialist education informs my practice, as my clinical experiences shaped (and were at the heart of) my theses; on this page, today, these influences once again work together to, I hope, create a more useful and comprehensive whole.
For many people, particularly nurses (we tend to be pragmatists), ethics is frustrating – instead of answers, one is often confronted with more, and often more difficult, questions. “Damn it!” one of my medical colleagues once exclaimed after a case review by a clinical ethicist. “Why won’t he just tell us what to do?!”
I, similarly, will not be prescriptive in this post, but instead cross the landscape of dying-related ethical concerns and pose questions for the reader to ponder.
There are various forms of assisted dying, all of which attract controversy from at least one corner. The most straightforward of these, at least from a philosophical perspective, is:
- the distinction between withholding and withdrawing treatment
- Is it assisted dying to cease an intervention, even if doing so results in the person’s death?
- Is this morally different from deciding not to initiate that intervention in the first place?
- And does the type of intervention make a difference?
Take, for example, a person with end-stage respiratory failure who presents to the emergency department with a chest infection. They won’t survive without the support of artificial ventilation, which means sedation, a tube down their throat and a machine breathing for them until the infection is resolved. Set aside any questions of resource allocation and just think about the patient in front of us, Ted. He’s desperately short of breath, has a fever, feels shocking and is afraid.
Is there a difference between deciding not to offer him the machine (ventilatory support), and deciding a week later to take Ted off the machine because he’s now at the stage where he can’t and won’t ever be able to breathe on his own (ventilator-dependence). Withdrawing support isn’t what will kill him – that’s the underlying disease – but it can feel otherwise. Is the act of commission (withdrawing) ethically different from the act of omission (withholding)?
What should we do if, before being sedated and given ventilator support, Ted grasps the hand of his doctor, looks her in the eyes and asks her not to let him die, even if that means he stays on a ventilator, chemically sedated, for the rest of his not-long life? Do we have an obligation to persist with futile treatment if that’s what the patient wants? What about if we have unlimited resources, so this doesn’t mean anyone else who could better benefit misses out on needed treatment? How about in the world we actually live in, where competition for resource-intense interventions (like ventilatory support, one-on-one specialist nursing care, and other supportive measures) is high? Does the fact that there are other people who need Ted’s ventilator and who could resume a normal life after a brief period mean his wishes carry less weight?
The doctrine of double effect (DDE)
It is still the case that some physicians are afraid to prescribe, and some nurses afraid to administer, very large doses of pain killers, in case the medication causes someone’s death, even if the alternative means leaving a patient in pain. This can be the case even when we know that people can develop tolerance for narcotics quickly, which means that the dose that was effective this week barely touches the sides next week. We also know that patients who’ve previously used narcotics, whether recreationally or as prescribed treatment, have or redevelop tolerance faster than ‘opiate naïve’ patients do, yet somehow this knowledge doesn’t diminish practitioners’ concerns, even when the patient in question both clearly needs pain relief and is dying.
The doctrine of double effect was envisioned by Thomas Aquinas in the 13th century as a response to this and similar dilemmas (eg. is it murder if you kill an assailant but intended only to deflect his killing blow). Provided the response is proportionate and the intent beneficent (good), a moral agent has not done wrong if a foreseeable but unintended consequence results from their action. This means, for example, that you can increase a dying person’s morphine dose if they still have pain, but it doesn’t mean you can give a 10-fold dose or give another kind of medication (like potassium). It also doesn’t mean that you can give a person whose condition is temporary (like someone with post-operative pain) a potentially lethal dose of pain killer – mercy must be tempered by the circumstances as well as prudence and intent.
Critics of DDE say that this puts an undue weight on intent, allowing people to skate moral responsibility for their actions, while a sadly large number of people have witnessed their loved ones die in pain because of practitioners unwilling to prescribe or administer the necessary amount of analgesia despite this centuries-old reassurance from the Catholic church that it’s okay.
The input of others
Traditionally, medical decisions were primarily made for patients by doctors. With both specialist knowledge and clinical experience, they have the most well-informed and objective position from which to make these grave decisions. As we moved away from paternalism towards consensus decision-making, patients got more right to exercise autonomy. Instead of his doctor deciding alone, Ted has input and, to some extent, veto power. Provided Ted is competent to make decisions, he can choose against some forms of therapy, but he cannot compel his doctor to perform interventions she believes are not clinically warranted. For example, Ted can decide against the ventilator, but he can’t decide to have a lung transplant – in his case the nature of his disease, his age and concurrent medical conditions mean that he would be unlikely to benefit from or possibly even survive transplantation.
In the last few years, though, there’s been growing pressure to consider other voices, too – the opinion of family members. After all, they very often know the patient far better than health professionals could and the onus of out-of-hospital-care usually falls to them, which can have a significant effect on their lives too. In Hardwig’s Is There A Duty to Die? the author talks about the emotional and financial burden on an American woman in late middle age of her mother’s repeated intensive care admissions – the patient’s financial resources were wholly depleted and the daughter (who had had to leave work) was seeing her own retirement funds being steadily eroded. She tells the author words to the effect of “I tell myself that she can’t see what this is doing to me. I don’t want my mother to die, but how am I going to live?”
This, of course, is one of the greatest concerns assisted-dying opponents have and it’s far less of a predicament in Australia, with universal health care, than in user-pays America. I can’t say it doesn’t happen, but I have neither seen nor heard of physicians here making health care decisions about withdrawing treatment because of the potential negative effect on family.
What, however, of the converse – how much should we listen to family members exhorting us to ‘do everything’? And how much should we weigh their opinion/s against those of a competent patient?
For example, there has been a highly publicised case from Belgium, where the son of a woman with long-term depression is suing the doctor who assisted her to die because he was not informed of her decision (except in an email his mother sent some months before her death, which he did not respond to). Leave aside the question of assisted suicide, recognise that this is not something that could possibly happen under the proposed Victorian legislation and ponder this – if a competent patient refuses permission for practitioners to contact their family members, even if this means those people will not have an opportunity to say goodbye, are we morally obligated to abide by these wishes? If we aren’t, at what point does patient confidentiality trump the family member’s right to know?
As I said before, ethics doesn’t often give us unequivocal answers. But sometimes the questions it reveals forces us to consider aspects of our own emotional responses that we hadn’t considered. My next post will be equally complex, but less problematic: the kinds of medically-facilitated good deaths and the questions they raise.
Previously on Nurse Uncut: