Earlier this year I did a sabbatical in Palliative Care. I deliberately chose to work with a purely consultative service based in a tertiary teaching hospital. They did not admit under their own bed card nor was there a hospice on site to admit to. We saw patients from all across the hospital; from outpatients to ED, from ICU to slow stream rehabilitation. My aim was to gain an understanding of Palliative Care practiced in these acute settings and take some of the principles I learned back to Emergency Medicine.
Most days in our own EDs we see patients with exacerbations of COPD. We can all picture a barrel chested man in his mid-70’s wheeled into the resuscitation bay with a nebuliser running. He is sitting bolt upright, intensely focussed on his next breath which will finish with a long expiratory wheeze just like the last. There isn’t much doubt that this is an exacerbation of his COPD just every other time he has presented. He can speak in short phrases at best, but no matter as you don’t really need to speak with him to know what to do. The medicine is easy; nebulised bronchodilators, steroids, some biPAP and perhaps some antibiotics. It worked last time so well that he got by with a few days in the respiratory HDU and didn’t need to go to ICU. So there we have it; a plan of sorts. Emergency medicine is all about disposition and he has a plan of disposal. Next patient please.
But is this really what he wants or needs? This is where it gets hard for Emergency Medicine. To fully understand a patients perspective of what they want takes time, a scarce resource in ED. The task itself made even harder by the patients being so unwell that staying alive, is at the moment, a greater focus than being understood.
In your mind you expect a good early response to treatment and that he is likely to recover from this current problem of an acute exacerbation of his chronic obstructive lung disease. You tell the respiratory team that as you neatly hand him over. With what little breath he has he makes clear though, that his biggest concern at the moment is dying, and in particular dying alone. Wanting to allay his fears you tell him he needn’t worry about that. Things will be fine.
He is still too short of breath to easily engage in a long conversation with you so you go off to speak with his two daughters. You provide the usual information about what you think is going on, how you are treating him and your expectation that he will recover from this episode. For them the major concern is that he is no longer safe to look after himself at home on discharge. They provide him with a lot of support already and are not sure what else they can do. Although they recognise his illness is serious, he has got better every time so far and it is clear there has never been a discussion about prognosis or limits of care in the future. The disconnect between what your patient is saying and thinking and what is going through the minds of his family is clear.
Nearly an hour has passed since he arrived and you reassess his progress at the bedside. biPAP seems to be having some effect on his distress but you can find little objective evidence of improvement. He continues to retain carbon dioxide, is requiring oxygen around 40% to maintain a barely acceptable saturation and his gas trapping and prolonged expiratory phase remains obvious. Holding your hand he thanks you in a few words: “You said you would help my breathing and you have”. You are frustrated that this is a disease you can’t cure, while he on the other hand is thankful that some of his acute distress is being relieved.
His admission is arranged under a Respiratory team that has strong links with the Palliative Care service. The Respiratory team recognise the trajectory that this patient is on: inevitable further declines, major issues with control of dyspnoea symptoms and a likely future precipitous decline from which he will die. They have asked the palliative care team to review him soon, even though they anticipate recovery from this episode which they are going to aggressively treat in the respiratory HDU. In their experience early Palliative Care involvement not only greatly aids in symptom control but often seems to be associated with longer life expectancy.
- Disease specific and palliative treatments can comfortably co-exist
- Palliative care isn’t just about cancer care, end-of-life care or care of the imminently dying
- Palliative care is best introduced early, not at the end of an illness
- An active palliative approach may actually prolong life while controlling symptoms at the same time
Palliative Care review your patient in ED and their first orders from are for hourly PRN midazolam 2.5mg SC and/or morphine 2.5mg SC. Your ED nurses are a little bit perturbed, even when told this is common Palliative Care prescribing. Surely benzodiazepines and opiates aren’t going to do much good for this man’s essential respiratory drive? Their order seems to be at odds with spontaneous ventilation on biPAP.
You can see that he is likely to improve from this episode but can also see that in the short-term things could go horribly wrong, whether from progressive Type II respiratory failure, severe pneumonia or a pneumothorax. The family now seem to understand the gravity of the situation but look to you for a more accurate assessment of his immediate prognosis. Your first instinct is to avoid this conversation but you recognise they have a real need to have this information as they come to terms with their father’s mortality.
Looking back through the notes you realise that this is the third time that you have treated this man in ED over the past 2 years. He has had other ED attendances in addition to those. Although he has recovered each time and ultimately been discharged home, there is an obvious trend of increasingly severe exacerbations occurring at shorter and shorter intervals. There is clearly no prospect of a cure and while he currently continues to live with his disease it is anticipated that in the future he is likely to die from it. The conversations you have had with him, his daughters and the Palliative Care team have brought this into focus for you. One day he will die of his COPD and it isn’t hard to imagine that you might be the ED clinician who has to provide care for him as he is imminently dying. As a rule you try to put a professional distance between you and your patients but it isn’t always possible. He reminds you of your own father and many of his friends. Accepting you might “lose” him even while you are actively treating him isn’t easy.
- Be self-preserving when providing palliative care. It is necessary to give yourself permission to grieve the patients you will lose
- Recognise the privilege of providing attentive and reverential care to the dying
And the last thought that I really want to finish with, one that has been the focus of Palliative Care Australia’s public advocacy campaigns and my real motivation in writing this post is that it is no longer right to avoid discussing palliative care. It is something that we all need to consider openly and honestly. It truly should be part of Emergency Medicine practice