Like all nurses of any length of practice, my clinical experience includes the most intimate moments of people’s lives. I suspect most laypeople think first of physical intimacies – bedpans and nakedness, though those are the least intrusive; for me and most of my colleagues, though, the real intimacies are less tangible – people who need to be strong for their families allowing themselves to be vulnerable with us; confiding long-held secrets and fears; making their dying days comfortable and calm; continuing care after their lives end.
While nursing care and death work have been the foundation of my academic career, I realised today, after starting a response to ‘Nurses Grieve Too,’ an excellent guest post by Emily Rankin on Ian Miller’s blog The Nurse Path, that I haven’t written about it here.
Like one of my favourite medical authors, American surgeon Atul Gawande, Emily introduces and closes her writing with the dying of a specific patient, while the body of her piece explores the emotion labour of grieving for and with our dying patients, wondering if we could have done more, and of needing to contain our emotions as we continue to care for our other patients.
Approaching her second year of registration, Emily is near the beginning of her career; I commemorated the 27th anniversary of my hospital-based education 45 days ago, and I long ago lost track of how many of my patients have died on my shift. I certainly don’t remember all of them, though there are some I will never forget.
Like many nurses, I prioritise the care of the dying – as well as pain relief, sedation, and secretion management (do they stiffen or grimace when turned? Are their eye movements rapid? Is their breathing shallow, rapid, laboured, moist?), fundamental nursing practices like smoothing sheets to prevent uncomfortable wrinkles, flipping pillows to the cool side, frequent mouth care to avoid caked secretions and dry lips, position changes, and back rubs make a huge difference. Helping someone die well is a mitzvah, for them, their loved ones, and it also helps us.
The deaths most of my friends and I remember most vividly are where the dying was not peaceful. Where the medical team, the family, sometimes (but rarely) the patient themselves pursued treatment long after the benefits outweighed the toll; where someone bleeds to death as we stand by, helpless to stop it; where end-stage organ failure means the only doses of pain relief high enough to treat condition A would kill them thanks to underlying disease B, so we have to see them suffering on their inevitable trajectory to death.
We remember the young people, whose time was cut cruelly short; the confused and demented people, terrified by things only they can see; and the unexpected deaths of those who seemed to be doing well.
I have shed tears for my patients, and for the grieving loved ones they’ve left behind; I hope that those who’ve seen the glisten of tears, the pinkening of my nose, also see compassion, without loss of professionalism. But I have not wept – whatever distress we feel, whatever we’ve seen and felt, the expectation is always that we keep going, absorb the experience, because it’s part of the job.
I have once been offered formal debriefing, after a patient I didn’t know committed suicide on site. It was disruptive, distressing, and chaotic on several levels, but not close to the most traumatic experience I’ve had. Without in any way blaming my management (for this attitude pervades the profession at all levels), it is only these spectacular deaths that we’re ‘supposed’ to be troubled by – not the elderly man drowning in secretions we can’t stop, the young mum with congenital vasculopathy, the younger man with breathtakingly rapid progression to advanced HIV, the woman who’s been cared for by us over the eight year decline from neurodegenerative diagnosis to death, or the man whose decision to end dialysis was received with a diagnosis of depression and course of electroconvulsive therapy.
I believe this lack of acknowledgement, along with intimacy, little direct control, the honour and responsibility of caring for people at their most vulnerable, and only rare opportunities to direct the residue of that labour and emotion, plays a part in why some of us speak to our patients while performing post-mortem care: we get to say goodbye, give uninterrupted care, and complete a journey that we have uniquely travelled.