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
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 !
One thing in life is for sure; we all die. How, when and where is seldom known. In an ideal world, we would die without a prolonged sickbed, pain, fear or shortness of breath. Preferably we would die at home in our sleep after a long and happy life; certainly not in a hospital, or would we?
As health care professionals we have to deal with dying patients every day. However, should it be normal that patients die in a hospital? In the 1950’s, the majority of patients died at home, whereas in the 1980’s, this was reduced to approximately 20%. Nowadays, only few patients die at home. It appears that dying is a process that solely takes place in a hospital or a nursing-home.
People do not always seem to realize that they have a choice between dying at home or in a hospital. A choice between dying on a general ward or in the Intensive Care Unit (ICU); dying with or without the most extensive treatment. This process of making a choice starts with the following question; Do I really want to go to the hospital in a certain phase of my life or during illness? And when I do, is ICU treatment the best option for me? All these questions seem logical, however they are rarely discussed. Talking about illness and dying seems to be something we rather not do. Frankly, this is something I do not completely understand: You should be the one that is in charge at the end of your life, and not a passing stranger (in a doctors coat). Moreover, it should be something you discuss with your loved ones.
As an intensivist I frequently talk to my patients even before they eventually come into our ICU. I inform them about their options in a phase in which ICU care is not yet necessary. At that moment I ask them how they see their future and we discuss how drastic an ICU admission can be. I mention that, despite medical meaningful or meaningless treatment, the patient is the one that determines his or her own direction. Guidance of a patient that is going to die and weighing our patient's wishes is also an essential part of patient care. In the end, dying in a hospital should be something abnormal. The problem however, is that we do not talk about dying, or at least not enough. We generally do not talk about it with each other, and only a few of us discuss the subject with the general practitioner or specialist. In order to break with this taboo, the American anaesthesiologist Dr. Zubin Damania (also known as ZDoggMD) wrote his own lyrics for a song originally sung by Eminem and Rihanna. With “This ain’t the way to die”
Dr. Zubin wanted to state that as a patient you should realize that you have the responsibility to determine your own fate. Furthermore, he claims that solely in America, millions of people undergo treatment that they possibly would have never wanted, let alone the costs associated with it. And why is this? Because we do not want to talk about dying? Or the process of death?
In the Netherlands, death as a theme has gained increasing attention. In the past few years, several television programs payed attention to this topic. Whether it were young people dealing with the fact that they were going to die and sharing their last months with us on camera, or in one-on-one interviews with people who knew they would die because of incurable diseases. I think it is possible that people talking about death on television has encouraged people to ask each other the question: “Have you ever thought about …What would you want …..”. I also believe that this makes it easier for us as health care professionals to start a conversation about the subject since more and more of our patients have already thought or talked about it.
In 2010, the conversation project was started by a couple of medical professionals that shared stories with their loved ones about “good deaths” and “bad deaths”.(http://theconversationproject.org). Today, this projects has grown to an extended network of professionals ranging from journalists andmedical workers to employees of the departments of justice, who pro bono work together with medical professionals in the so called Institute for Healthcare Improvement (IHI). This organisation literally offers a starter kit that enables patients to prepare themselves for a conversation about death and their treatment wishes. The website also offers several stories from patients and their relatives that could help them making a decision.
Several research projects have been instigated to help us better understand the impact of an ICU admission. These projects might also help us to better inform our patients about the outcome of our patient population and the impact of intensive care medicine in general. Not solely on mortality or morbidity, but also on psychological functioning. Not only in the first month after admission but also after a year or even after 5 years. In the end, I believe that by better informing our patients they can make a thoughtful decision about their “own death”
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 !
Lyrics “This ain’t the way to die”
Just gonna stand there and watch me burn End of life and all my wishes go unheard They just prolong me and don’t ask why It’s not right because this ain’t the way to die, ain’t the way to die
Patient:
I can’t tell you what I really want You can only guess what it feels like And right now it’s a steel knife in my windpipe I can’t breathe but ya still fight ‘causeya can fight Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate I’m like a pincushion, I hate it, the more I suffer I suffocate And right before I’m about to die, you resuscitate me You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t Tube is out, you put it right back, here we go again It’s so insane, ’cause though you think it’s good, I’m so in pain I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed And, crap, who’s that nurse? I don’t even know her name You lay hands on me, to prolong my life again I guess you must think that this is livin’…
Just gonna stand there and watch me burn End of life and all my wishes go unheard They just prolong me and don’t ask why It’s my right to choose the way that I should die
Doctor:
You ever love somebody so much, you can barely see when you with ‘em That they, lay sick and dying but you just don’t wanna let ‘em Be at peace cause you miss ‘em already and they ain’t gone Beep beep, the ventilator alarms
I swore I’d never harm ‘em, never do nothing to hurt ‘em Hippocratic oath primum non nocere now I’m forced just to torture ‘em They push full code, no one knows what his wishes were His sister heard him say once, “I don’t wanna be a vegetable” But no one agrees in the family, his caregiver Kate Wants him comfort care but Aunt Claire lives so far away That her guilt eats her like cancer So she answers, “Wait! I think he’ll wake” Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain Critical care? Just hypocritical when it’s so insane But they insist I shock his heart again so I persist Guess that’s why they say that love is pain.
Just gonna stand there and watch me burn End of life and all my wishes go unheard They just prolong me and don’t ask why It’s my right to choose the way that I should die The way that I should die
