A patient with end-stage motor neurone disease was admitted for hospice care with worsening bulbar symptoms. Although he initially walked onto the ward he became very distressed and asked for sedation. After much discussion, this man was deeply sedated, and after some harrowing days, died. Was it right to provide terminal sedation? What should the threshold be for such treatment? How should our personal reservations affect how we approach the distressed patient in an end-of-life situation?
- Attitudes towards death
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I knew that a patient with end-stage motor neurone disease was being admitted to the hospice, and had prepared for the arrival of a very sick man. My first shock then came when he walked onto the ward, slowly but unaided. He was admitted with worsening bulbar symptoms, and although he still had some limb function, he was virtually unable to speak and was struggling to swallow.
His advanced decision was comprehensive and specific, clearly listing and reinforcing his preferences in multiple situations. If he became unable to swallow, he declined intravenous fluids and refused artificial nutrition. He objected to antibiotics in case of infections. After 18 months of slow deterioration with motor neurone disease, this man did not want his life prolonged.
From the start I realised that psychologically our patient was at the end of what he could cope with. He was increasingly frustrated with difficulties in communicating and, according to his wife, just wanted the suffering to end. He wished to be sedated or, in his words, ‘put to sleep and never wake up’, if possible without having to ‘go to Switzerland’.
The mental anguish suffered by our patient did not improve despite the supportive atmosphere of the hospice and a combination of psychosocial interventions. In fact, he seemed to become increasingly agitated as time went on. At this point we prescribed mild sedation with the intent of relieving this agitation. However, the patient's physical condition now worsened and he became unable to swallow. Communication became even harder for all of us. Given the clear wishes expressed in the advanced directive and reiterated by the patient's wife, no artificial nutrition was deemed appropriate.
Over the next days we made a decision to increase sedation stepwise. However, I and many team members felt very uneasy about sedating a patient whose distress was increasingly difficult to assess. At times I felt that we were sedating the patient because he had asked to be sedated, rather than because of any clear signs of continuing agitation. At other moments, I felt that as his emotional distress had been so clear earlier, we had a duty to treat even if there was now difficulty communicating it. Because other methods had failed, only sedation would successfully treat his symptoms.
As he was now receiving no nutrition or fluid, our patient slowly deteriorated, but remained aware for some harrowing days before his sedation was increased. He died soon after.
I felt uncomfortable with the decisions we made during this patient's final days and have since repeatedly asked myself: ‘Should we have sedated this man at the end of his life?’
As one doctor put it: ‘If this man were in pain, we would treat it. Why should we not treat his distress?’ Is there an ethical difference between relieving physical and psychological pain? It is actively encouraged for patients to ask for further painkillers if they are hurting, but our patient indicated he was distressed and was initially denied a full range of treatment. I think the difference lies in the fact that the patient was not asking for sedation just to relieve his psychological suffering, but wanted us to shorten his life. If we complied with the first request, we were intrinsically complying with the second, and thus causing harm.
This complex situation can be enlightened by the General Medical Council's duties of a doctor,1 in which the duty to ‘first do no harm’ means that we must not cause a patient to deteriorate by means of sedation. However, the widely used doctrine of double effect2 states that if we intend to relieve distress, then we can treat it even if we foresee deterioration. So by this method, sedation of our patient to treat his suffering is permissible, despite the known adverse effects.
If sedation can be countenanced to relieve suffering, then we must make an assessment of the patient's psychological state to determine the level of suffering experienced. I think that one of the most unsettling things for me and other staff was the difficulty in making this assessment. Even if suffering can be reliably inferred, is this alone sufficient to resort to sedation?
Some practitioners use the imminence condition,3 which states that sedation at the end of life is appropriate only if:
distress is intractable, and
the end of life is expected in a short time.
The first point is difficult to assess, as described above. As to the second point: when our patient was admitted, he was not obviously in the last days of his life, although he was approaching the terminal phase of his disease. It was only after we first sedated him that his swallow deteriorated further and his life was then limited by lack of nutritional intake. This means that from one viewpoint we caused this man's life to be curtailed using mild sedation at his request, then when he fulfilled the imminence criteria, sedated him further and further shortened his life. Was this physician-assisted suicide?5
An alternative way of summarising this case: we assessed his psychological symptoms and treated them, referring to his wishes when appropriate, and as a last resort turned to sedation in order to treat intractable distress. We thus stayed on the right side of the doctrine of double effect, and by treating the patient in his best interests his suffering was minimised.
In fact neither of these is true. We—the hospice staff—discussed and wrung our hands over this decision and put it off. We neither gave the patient his wish in a short and peaceful death, nor did we minimise his suffering in his best interests. Why could we not let him go?
The fact that we in part caused this man's deterioration left me with a sense of guilt. It was hard to detach from what we could see happening (our treatment causing the patient to become less well) and put it in the context of our aim (to alleviate suffering). To wield the doctrine of double effect dispassionately may have led to a quicker decision, but I felt an unexpectedly strong urge to preserve this patient's life. While I could see he was unwell and suffering with no hope of a cure, I watched him slip away at our doing and his choice and felt almost that I was party to a killing.
Was this feeling important or a barrier to good medical practice? I certainly believe that our own emotions allow us to empathise with patients and are central to holistic care, but they should not prevent us from making objective decisions in a patient's best interests.
A recent study4 suggested that doctors with a religious faith are more likely to want to preserve life than those without. Personal views do affect our practice, but what seems clearer is that we must treat the patient in front of us, and act with impartiality. If a patient is suffering despite our best efforts, then we have a duty to treat that suffering, and sedation as a final resort, although controversial, can be appropriate. In the case I experienced, the ultimate error may have been our lack of resolve.
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