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Palliative care emergencies are well recognised. Hypercalcaemia, spinal cord compression, and obstruction of the superior vena cava are standard fare in terminal illness, and their management is often taught. But how often do we recognise communication as a genuine palliative care emergency?
A 67 year old man was transferred to our hospice from the local district general hospital on a Friday. He had end stage cardiac failure, and an implantable cardioverter defibrillator was in place. The referral was clear enough: he was coming to us to die. Just as clear was the fact that he didn't know his prognosis but was apparently expecting rehabilitation.
By the time I (MP) had admitted him he had turned blue three times, and during one of these cyanotic attacks the defibrillator had discharged. It was clear that he was very near the end. As I began to explore his understanding of the illness and what the future held for him, I felt a subtle squeeze on my elbow from his wife, as much as to say, “Don't tell him he's dying.” It was 4 30 on a Friday afternoon, and this had all the makings of a bad death.
This was obviously a communication emergency. Certain things had to be communicated clearly in a short period of time in order to prevent his death being a complete mess for him and his family. The first priority was to speak with his wife and daughter. Both were fully aware of the prognosis but adamant that he should not be told, as “he couldn't cope with it.” He had always been the strong one who protected the rest of the family, and they were sure he wouldn't be able to accept the situation.
I explained that we had an opportunity that many people miss—to say the things that needed to be said, to “put the house in order” and say goodbyes. If this wasn't taken, they might regret for years that the parting was sudden and messy. They concurred, and we agreed that I should speak to him alone.
Another urgent priority was to deactivate the defibrillator. This had not been discussed, but the last thing I wanted was for a dying man to be repeatedly flogged back to life when his body was begging to be left alone, causing unnecessary distress to patient and relatives. I called the teaching hospital that had implanted his defibrillator and located the nurse consultant, who was known and trusted by the family. The patient's wife would not consider deactivation without speaking to her, but a brief conversation between the two assured her that this was the appropriate thing to do. It was too near the weekend to undertake the usual full deactivation, but a suitable magnet was sent by courier that evening for use by the nurses in an emergency.
This done, it was time to talk to the patient. As we discussed his prognosis, he turned his eyes up to mine and said, “I thought as much, doc.” He had suspected for a while that he was near the end but needed it confirmed by someone in authority before he would discuss it openly. In a constructive conversation we discussed symptom control, explored some spiritual issues, and agreed on the need to speak openly with his wife and family. By now it was after 5 pm and I was booked on a train to get to a wedding at the other end of the country. I left hoping that the patient and his family would take the opportunity to talk.
On returning the following Tuesday I learnt that he had indeed required sedation with a syringe driver on the Saturday and had died peacefully on Sunday. Although the defibrillator had discharged a couple more times, the terminal event was peaceful, as he had presumably gone into asystole. That lunchtime the family was due to attend for a bereavement meeting and collect the death certificate. I wondered how they would look back on that last Friday evening they had spent with the man they all loved.
Although clearly sad at his death, they were deeply grateful for the frank discussions we had had. After I left on Friday they had spent the evening together saying goodbyes, agreeing funeral arrangements, even enjoying a laugh and a joke together as a family. What a difference from the cloak of secrecy that had prevailed on his arrival! I could not have imagined a better result—a looming bad death had been transformed into a good one by the diagnosis and treatment of a communication emergency. At the end of our meeting his wife presented us with the Christmas present she had bought for her husband before his death—an ornament that now stands in the hospice as a memorial to the short time he spent with us.
Many have written on the importance of recognising and treating emergencies in palliative care and oncology. Likewise, much has been published on the importance of communication in palliative care. But the two concepts have rarely been explicitly linked, with communication identified as a genuine palliative care emergency. Although in practice we often recognise what needs to be done in a particular situation, formally identifying communication emergencies as one of the main emergencies in palliative care would increase awareness and improve their management.
The special case of managing defibrillators in terminal illness has been considered, although in our case the ethical issue of deactivation was complicated by the lack of prior discussion about the impending death. The two factors combined to create the communication emergency.
Palliative care emergencies should be treated by the “rapid reversal of what is reversible . . . Missed emergency treatment of reversible symptomatology can be disastrous” (BMJ 1997;315:1525-8). These principles apply fully to communication emergencies. The approach of death often involves situations where patients, their relatives, and healthcare professionals need to be open about matters such as prognosis, resolving relationship difficulties or spiritual questions, saying goodbyes, and communicating wishes about the future for those left behind. Although these issues can be of great importance, the window of time left for communication can be quite short: just a couple of hours, or even less.
The consequences of misdiagnosing or failing to treat a communication emergency can be important. For patients themselves it could result in a difficult death, where existential distress may simply be labelled as terminal agitation, leading to greater levels of sedation. This may be unnecessary if the relevant issues can be discussed while the patient is still conscious.
For relatives, failure to treat a communication emergency could result in years of avoidable guilt, regret, and sadness as they look back to the last days of their loved one, wishing that they had communicated better. This will most certainly make the normal grieving process more difficult.
Palliative care professionals particularly (but also other healthcare professionals) should be as alert to the presence of communication emergencies as to any of the more widely recognised, physical ones. The consequences of missing them can be just as serious.
Failure to treat a communication emergency could result in years of avoidable guilt, regret, and sadness