It is Wednesday evening. Eighty days ago, Guillian Barre Syndrome (GBS) took away nearly all muscular functions of our 81-year old patient. Having survived pneumonia, sepsis and GBS, all that is left is a cognitively sound, tracheal cannula-dependent, tetraplegic patient. Where there once was a sparkle in his eyes, now only sadness remains.
On that Wednesday evening I sat down and talked to my patient and his wife. Was there anything I could do to make life less miserable for them? In the end we concluded that there was only one thing I could do: take him home for the last time. So, I called the nurse and we started to search the internet. Within a few minutes we found the website of the “make a wish” ambulance (http://www.wensambulancebrabant.nl ).
On Thursday morning, one of our ICU nurses and I were accompanied by an ambulance nurse and a driver ready to take our 81 year-old patient home. Never before had I seen anyone enjoy an ambulance ride as much as Mr. GBS.
We spent 3 hrs in his house and garden, with tears and laughter. This was his last visit home, nonetheless, it seemed that these 3 hrs made up for the 80 days of misery. Not long thereafter, Mr. GBS died.
In my 5-year ICU career, I only went home to a patient on three occasions. This was the first time I returned with my patient. On the other two occasions the patient stayed at home and received palliative care. In the Netherlands transmural palliative care can be realized within 24 hrs. In the Radboud University Medical Centre, an ICU nurse created a protocol to transfer palliative care from the ICU towards the patient’s home. Over the past 5 years approximately 5 patients a year have used this possibility of dying at home (https://www.venticare.nl/kennisbank/artikelen/naar-huis-om-te-sterven-vanaf-de-intensive-care article in Dutch).
Why is taking your patient home at any day during his or her ICU stay not standard of care? Is it related to the costs? Unlikely, because the “make a wish” ambulance is supported by donations and the nurses and doctors work for free. Is it fear that something might happen to the patient? This is something that can be discussed with your patient (if possible) and / or relatives. Furthermore, the doctors, hospital, and patient are insured. Workload then maybe? Workload is and will always be high in our profession. Nonetheless, witnessing Mr. GBS’s emotions upon his visit home gave our complete ICU team extra energy and augmented their joy at work.
I hope that this subject will get the attention it deserves throughout the world. In my opinion, offering our patients and their loved ones the possibility to visit there homes, either during their (long) ICU stay or at the end of their lives, should eventually become standard of care.
Bart Ramakers is an Intensivist at Bernhoven Hospital in the Netherlands, he is also my dear college at the foundation 'Venticare 'professionals in acute care. I want to thank him for his blog and hope he wants to write again in the future for Humanizing Intensive Care !
Read his previous blog here: https://www.blogger.com/blogger.g?blogID=4950057984322853031#editor/target=post;postID=2490644021030687224;onPublishedMenu=overview;onClosedMenu=overview;postNum=1;src=postname
Palliatie op de ic of thuis Lees het protocol & checklist van het RadboudUMChttp://www.fcic.nl/onderzoek/icu-delirium-2-2/