I want to talk about another real world example of what some long-term Patients and their Families are going through, when faced with long-term ventilation with Tracheostomy in Intensive Care.
A long-term Patient in Intensive Care died after around 120 days in Intensive Care. A very tragic case that would have ended with the same outcome and in a nicer and more Patient and Family friendly environment, if people would think outside of the box and outside of their current clinical paradigms. In this instance- thanks to a few courageous people- a few steps in the right direction have been taken. Those steps, from my perspective, were quite unusual in the current Intensive Care paradigm, but made a big difference to the Patient and the Family and have the potential to be taken further in the future, but I'll talk about the specifics later.
The Patient was ventilated and had a Tracheostomy pretty early in the ICU admission due to the Patients underlying clinical issues and premedical history.
After around day 60, the Patient- as so many long-term ventilated Patients in Intensive Care- lost strength, vitality and was rapidly deteriorating, although the Patient never lost faith and had been very positive generally, despite being in a cubicle with limited privacy and dignity. The Patient was extremely brave, despite the destiny the Patient was facing, as after around day 60, so many long-term ventilated Patients and their Families usually lose patience, stamina and faith in the ordeal they are going through. Usually Patients become clinically depressed, due to the environment they are in and they suffer from a disturbed day and night rhythm with sleep deprivation. How can one sleep in a busy, high stress, 24/7 environment anyway? I have yet to find the answer to that one...
The Patient was generally clinically stable and the main issue keeping the Patient in Intensive Care was the ventilator dependency. The Patient was ready to fight the odds, but also realised after around day 90 the limitations of what modern medicine is able to provide and that our time on this earth is limited. It was around the day 90 mark when the first discussions about palliation and withdrawal of treatment were raised and the first Family meetings were held around the issues of palliation and withdrawal of treatment. Mind you the Patient was only in its mid fifties and far too young to die, let alone spending the last few months in Intensive Care with no Quality of Life...
The Patient had limited support from immediate Family- not because the Family did not want to support their loved one- However, the Patient's spouse lived far away and also suffered from a stroke in the last 6 months. The Patient's spouse was therefore only able to visit once a week. Probably not quite a visiting pattern that fully supports a critically ill Family member in Intensive Care...
The Patient also had adult children and they had young children of their own and the children therefore had serious time constraints to support their parent through the ordeal in Intensive Care.
Discussions around end-of Life Care, palliation and withdrawal of treatment are never easy, and especially if Patients are awake and understand the implications of the decisions being made, the Patients view should count as well. The Patient and the Family were having a very difficult time to confront the end-of-Life situation, as the Patient and the Family were desperately and understandably trying to hold on to a young life.
The sad thing about the story is that, like in so many other cases that I have witnessed over the years in Intensive Care, everybody working in the environment knows that some Patients are going to die over sometimes weeks and months and Intensive Care is not an environment where people want to die, if given a choice. Especially if Patients are awake, why would we as health professionals leave them in a busy, noisy and stressful Critical Care environment, if there is another option available, that would not only provide the Patients, but also their Families with a much better Quality of (end-of) Life? Why do Intensive Care Units continue to occupy their beds with long-term Patients, spend hundreds of thousands of Dollars of tax payers money, when there is another more cost effective solution that also frees up scarce ICU resources(staff and beds) that could be used for more acute Patients?
Continuing with the Patients ordeal, during the last two weeks of the Patients stay in Intensive Care, more Family meetings were held, until it was decided that the Patient was going to be palliated. Around 48 hours prior to the Patient being palliated, the Patient had the opportunity to go home for a visit whilst being ventilated. This was made possible thanks to a few courageous health professionals within the Intensive Care environment. That gave the Patient and the Family a few hours together in their Family home. The Patient was able to visit the Family home one more time and say goodbye to the house and to the pets that lived there... This was good news for all parties involved, if there were any good news at all, in such a difficult situation. The Patient went back to ICU and passed away within the next 48 hours.
But why do Intensive Care Units still wait for 60 or 90 days and longer in order to provide a Patient and their Families with what they really want, really need and provide them with a better Quality of Life and/or Quality of-end-of-Life? This particular Patient, and most long-term ventilated Patients with Tracheostomy, could go home after day 60 and they could be provided with a much better Quality of Life and/or Quality of-end-of-Life than it can ever be achieved in a Critical Care environment. Furthermore, especially is Families have constraints around visiting their loved ones, as was the case with this particular Patient, why not take a Patient home and have them surrounded by their loved ones?
Any other industry is creating real world solutions for their Customers, generally through innovation. The health Industry is extremely slow to embrace new models of care, that provide real and tangible benefits and opportunities for Patients, Families and Hospitals alike, especially if those models of care exist in other countries that have proven to be effective and Patients, their Families and Hospitals prefer to have long-term ventilated Patients with Tracheostomy in the Home, looked after by highly skilled Critical Care Nurses. Those long-term ventilated Patients with Tracheostomy and their Families would never in a Million years go back to Intensive Care if they can stay at home