A nurse researcher who followed six patients spending a fortnight to 66 days in intensive care found they emerged not only physically debilitated but also psychologically fragile.
Dr Claire Minton, a lecturer at Massey University’s School of Nursing, recently graduated with her PhD after exploring the experiences of long-stay ICU patients, their families and the health professionals who cared for them.
The average admission to intensive care is 2.6 days, but advances in life-sustaining therapies means increasingly more patients are surviving their initial critical illness and then needing long periods reliant on ICU level care before they are physiologically stable enough to be transferred to a ward and then on to rehabilitation and home. In New Zealand long-term ICU patients make up about 5-10 per cent of ICU patients but 25-30 per cent of ICU bed days.
Minton said it was important for healthcare professionals to understand that with advances in technology and medicine constantly pushing the boundaries it was also constantly creating new groups of patients with new complex care needs not only in ICU but after they return home. “We need to be aware and recognise the complexities and challenges that arise from new life-saving interventions,” she said.
Minton, a long-term ICU nurse herself, said she chose to follow long-stay patients throughout their journeys as there was limited research on the topic and little that captured the patient’s actual experience during their lengthy stay. It was also inspired by a long-stay patient she observed during a short secondment to an ICU being withdrawn and depressed during her two-month stay in ICU; but who greeted Minton with a cheery wave once out on the ward and told her the difference it made to her now knowing for certain that she was going to get well.
“And I thought, if I had captured her story at the end I would have missed that stage (of her being withdrawn and depressed).”
With all six patients Minton followed – aged in their 40s to 70s and based at four different hospitals – it was uncertain at times where they would survive with the six being admitted with either severe respiratory failure, septic shock or multiple trauma.
The four phases of a prolonged stay ICU patient
Her study lead to her identifying four phases or stages of the prolonged ICU stay patient’s journey and the needs identified at each of those stages. She hopes her findings will be used as a framework for further research and to guide nurses and other health professionals caring for the patient or supporting the family during those phases from ICU through their inpatient rehabilitation, and on to their return home to the community and their primary healthcare team.
The first phase was the stage of the patient’s first initial critical illness when it was unclear whether the patient would survive. Minton says families are often feeling overwhelmed and facing the probability their loved one would die. For ICU nurses this was their usual core role – providing life-saving care by the vigilant assessment and monitoring of their critically ill patient as well as being uncertain of the patient’s prognosis.
The second phase she called the “long-waivering trajectory” or “living in an uncertain world” where the critical illness had been stabilised but the person was so physiologically debilitated that they still faced the risk of setbacks and complications. Families at this stage were getting tired from the accumulated stress and were often constantly looking for signs like changing skin colour and times of wakefulness as signs the patient is improving. They are also starting to worry about whether their loved one will ever return to a normal life and can be facing financial stress from time lost to work and the costs of being ever-present in hospital.
Minton said for the nursing staff this second phase was dealing with the multiple contingencies or complications that could occur to their physiologically compromised patient – who is often in a state of delirium and semi-consciousness. There also can be ethical questioning of the long-term prognosis of providing life-saving care to the critically ill and distress – particularly for less-experienced nurses – over whether the long-stay patient will ever recover and return to their family.
The third phase was when the patient was physiologically stable and was being ‘weaned’ off the life support technology which they had become both physiologically and psychologically dependent on. Minton says at this stage the patients are conscious and becoming aware of the severity of their illness and are emerging into a failed body with neuropathy and myopathy. They are often anxious, scared and now well enough to be disturbed by the lights, noises and routines of being in the ICU environment. Minton says they are also often confused as had delirium and hallucinations and are unsure what was real and what was not.
Minton says for ICU nurses this can be a challenging period as patients may need minimal physiological support but their psychological needs step up with the now conscious patient stressed and uncomfortable after being bed-ridden for so long but may not yet be able to speak or write as they are so physically debilitated. “Nurses are really busy trying to keep patients comfortable or meeting their needs.”
She said ICU nurses tended to be divided about this stage of nursing the long-stay patient with some really liking the different challenges of the final phase of care while others find long-stay patients “quite demanding”. Having continuity of nursing at this stage, which was made easier by hospitals that had nurses on eight hour-shifts rather than 12 hour shifts, was definitely better for patients, said Minton.
The final phase was the transfer to a normal ward, rehabilitation and then return to home. For patients there is the awareness of how close they came to dying and wanting to know from their families what has happened to them in the intervening weeks or even months. Which can be emotionally draining for the family who has experienced those weeks and months of uncertainty.
She said one patient described the experience of waking up in ICU after a prolonged stay in this way:
“I reckon they drug you, they starve you, you know they do something to you – it’s a bit like being in the armed forces, they have to tear you down before they can build you back up”.
After completing her research Minton believed it was important that the patient’s nurses – from ICU through to the ward nurses, the rehabilitation nurses and the nurses back in their community – understand the complexity of the different phases and look at ways of helping the patient, families and health professionals to actually improve the care and transition through each phase.
She saw the research as a benchmark study and there was potential for further research focusing on different aspects and interventions for each of the prolonged ICU stay patient phase.
“The big thing is also recognising that we are actually caring for a long-term patient – who probably now has a chronic, critical illness in an acute care environment that is unsuitable. Because of that (unsuitable setting) we have a whole pile of problems occurring.” She is now planning a follow-up study for what happens to patients once home. Her initial research did include one visit once the patients were home. “And you could see that they had a number of issues physiologically as well as psychologically, with not much support from healthcare agencies in just understanding really (what they had been through).”
She said vast amounts of time and resources are invested in them while in ICU but then they actually also need major after care – “otherwise what’s the point?”
“It is a horrendous illness for the patient and family – it is devastating – it changes their whole life so they need the supports to then be able to move on.”