For the first in our new Palliative Care and Intensive Care series, Dr Sophia Henderson, Post CCT (Post Certificate of Completion of Training) Fellow in Intensive Care & Palliative Care, reflects on how historically referring ICU patients to palliative care was seen as a failure and why change is afoot.
The intensive care mindset I grew up in went something like this… ‘People should be sick enough to need intensive care, but not so sick or frail that they will not survive it– and if they’re dying, they need palliative care, not intensive care’.
Quite the subset.
As the walls between different specialties fall, we are now much better at recognising the million shades of grey in which we function in medicine. We have, of course, always done our own versions of palliative and end-of-life care in the intensive care unit (ICU). It’s just that it was either classed as ‘failure’ (the devastatingly sick patient who had continued to deteriorate despite our best efforts) or inevitable and everyone rather lost interest… ‘Bed 12 is palliative – we’ll move on to the next…’.
A few years ago, I was involved in the withdrawal of life sustaining therapy from a gentleman in his sixties. He had had surgery two weeks previously, made it to the ward a few days later and had then sadly experienced a catastrophic complication. There was an attempt at rescue surgery but after ten days or so in the ICU, all signs were not good. His family were understandably devastated but clear that he would not tolerate a quality of life less than his usual and would hate to be on ICU. Together we planned the process of how and when mechanical ventilation would be withdrawn safely and with compassion. We ensured that there was opportunity for significant others to come in and visit him, and also that symptomatic medicines would be up and running to avoid any pain or distress.
Although as a profession we are much better at this than of old, I still sensed a subtle but noticeable shift in mindset once the plan for withdrawal of life sustaining therapy was communicated to the ICU team. Indeed, it transpired later that less than half an hour after this decision was made, the question was asked ‘Could the patient be doubled up?’ (decreasing the standard ICU nursing ratio so that the nurse would also be looking after another patient). I do, of course, appreciate that this is sometimes necessary, but I can only tell you that this was one of those rare, unnervingly quiet days on ICU and we certainly were not strapped for staff.
All this got me thinking… how do we make the perceived value of excellent end-of-life care equal to that of the neat and tidily charted, all-pumps-in-a-row care of the highly dependent ICU patient? For the intensive care entrenched, there is something so entirely different about removing extraneous equipment, turning off unnecessary monitoring and forsaking the hallowed ICU chart. I feel sometimes that these actions appear to disconnect us from our patient, as if some imaginary ICU umbilical cord has somehow been severed.
We need help to shift gears at this point, whilst remembering that the patient will still benefit hugely from those neat box-ticking tendencies to which we are so prone. Translated, that penchant for attention to detail will ensure that the patient is optimally sedated, analgesed and positioned, and that we still notice the myriad other small-but-important things; here too the marginal gain wins the day. Knowing that this end-of-life experience was as good as it could be is hugely beneficial for the patient and their relatives – and for staff.
We should also fight the urge that we are necessarily unwelcome at the bedspace by families. This is almost exclusively a frightening and out-of-control experience for them and I feel we should not hide behind ‘giving the family space’ and make sure we are present enough for them if they wish it, as well as to assess and amend any care needs. All a difficult balance I agree. But we need a culture change to validate that the stakes are just as high as if this were lifesaving medicine, not least because this end-of-life experience is likely to live with the family forever.
I feel optimistic about the future of collaboration between intensive care and palliative care. We have much to learn from each other and there seems to be a growing momentum in the field. I was excited to find a session on death, dying and communication front and centre at the recent Intensive Care Society’s ‘State of the Art’ ICU conference in Belfast. There are a small number of intensive care training programmes incorporating palliative care beginning to appear in the UK. There is also an increasing number of collaborative projects involving the two specialities, including the recently formed research network ‘EPCIN’ (End of life and Palliative Care in ICU Network).
I’m hugely glad the winds are changing. It is more than possible to align the intensivist mindset with that of palliative care – we just need to work on valuing both equivalently. A patient’s end of life care needs just as much input as when the goal was curative; it’s just different input. Let our attention to detail persist, even when the bigger picture of a life ending is centre stage.
Links and resources
To find out more about End of life and Palliative Care in ICU Network (EPCIN) click here.
About the author
Dr. Sophia Henderson is a Post CCT Fellow in ICU & Palliative Care at the Royal United Hospitals, Bath in the United Kingdom. Twitter: @sophjhenderson.
SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.