Reason one: Quality of Life for Customers and their families. There is no such thing as Quality of Life for a long-term ventilated Patient with Tracheostomy in Intensive Care. I vividly remember this 38 year old gentlemen being diagnosed with Guillan Barre- Syndrome. He spent a good three and a half months in Intensive Care on a ventilator with a Tracheostomy. Hell was he depressed and frustrated- and so was his family. His elderly Parents, his young wife and his two young children spent far too much time in Intensive Care, with their family life, their health and their general well being suffering. This gentlemen could have gone home after one month, if specialised services had been available. The only thing that kept him in Intensive Care was his ventilator dependency and the lack of specialised home Intensive Care Nursing services.
Reason two: Quality of-end-of-Life for Customers and their families. The full force of exposure to suffering, pain and vulnerability hits when somebody is dying slowly on a ventilator with Tracheostomy in Intensive Care. Everybody who has witnessed the slow death of a Patient dying on a ventilator with Tracheostomy in Intensive Care, will not forget the experience. I remember a number of cases vividly over recent years, but the one that probably stood out most, was a young lady in her mid- fifties. After a new set of lungs had given her a few more years to live, she now was readmitted back to Intensive Care and the full force of respiratory failure hit her. Over a good 8-12 week period, this lady and her family went through hell. Fully conscious most of the time, she occupied a bed space in midst of the unit, glaring at people who passed by. Intensive Care is a very busy 24/7 environment- I had to throw that in- and in the middle of this 24/7 thoroughfare was this lady, surrounded by her family, most of the time and everybody could actually see what was going on. People should have seen her husband. I remember that at the beginning of the lady’s ICU admission, he was full of strength, very supportive and always friendly and ‘chatty’ with the staff. Towards the end of his wife’s stay in Intensive Care, he could hardly walk with a sore back. I think he felt the full force of what him and his wife had been through, despite of all the efforts of the marvellous ICU staff.
Quality- of-end-of –life is not a term Health services, hospitals or even palliative services use and I believe it is so underrated. Shouldn’t ‘Palliative services’ be renamed to ‘Quality of-end-of-life services’? Shouldn’t we strive to provide Quality of-end-of-life, just as much as we strive to get Patients out of Intensive Care in a better condition than what they came in for? Isn’t it a privilege to provide Quality at the end of somebody’s life? I believe it is. Death is part of life- and the sooner we accept and embrace it and make it part of our day to day living, the more creative and accepting we get of the fact that there is Quality, even at the end of our lives.
Reason three: Quality of work environment for staff in Intensive Care
Everybody who has worked in Intensive Care for a period of time, whether Nurses, Doctors, Physiotherapists or anybody else who has come in contact with a long- term mechanically ventilated Patient with Tracheostomy and their families, knows the feeling and the uneasiness when a Patient has been in Intensive Care for sometimes many weeks or many months. Those Patients are very often not on the ‘top priority’ list of anyone within the Intensive Care environment. Depending on the Intensive Care unit layout, those Patients might be left in a side room, with an Agency nurse looking after the Patient, because the permanent staff, have lost their enthusiasm looking after the Patient. So the Patient is then left with the Agency Nurse looking after the ‘day 68 Trachy Patient’. Now, no disrespect to Agency nurses, but it is usually the permanent staff of an organisation that is usually more engaged with Patient care.
Furthermore, the Patient has also ‘slipped’ down the priority list of the Medical staff. They very often come and see this Patient last on their ward rounds. As nothing is moving forward with this Patient anyway and everybody is feeling the burden of not really making any progress with this Patient, everybody is a bit like, “well there is not much we can do with Joe anyway. He’s got a Trachy and is still ventilated- so what are we going to do?”. The discussion around Joe is not going to move forward, as the ICU team has not many more options to provide Quality of Life for Joe.
Once again, everybody who knows and understands how an Intensive Care Unit operates and functions, knows that the morale of staff is usually at its lowest, if there has been one or more long- term Patients in Intensive Care, as for Staff in Intensive Care, the higher turn- over Patients are more rewarding, especially if quick and marked improvements can be seen.