It’s hard to believe it’s been about a month since I’ve written here. Various health issues have kept me away from the keyboard, although I’ve been monitoring news and other information sources. I just haven’t had the energy to write. I’ll be doing my best to catch up over the next few weeks – there will probably be days when I publish two posts or more.
This op-ed from the Irish Times is especially appropriate. As you’ll read, it has a lot to do with breathing – and the not-so-shocking feeling that the writer feels it’s better to breathe than not breathe – better to be alive than be dead. We’ve been appreciating those simple (to us, anyway) truths in our own household. The author of the piece highlighted below found that his desire to go on breathing met with considerable resistance from the medical team treating him.
From: They asked me why would I want to live
YOU’RE IN A room in Dublin. A man walks in whom you’ve never met. He starts to talk to you. He asks you if you have any children. You say you do. He tells you not to go home tonight. That when you leave the building you must turn right instead of left, head north instead of south. That you must keep going in an unknown direction, knowing only that you will never see anyone from your life again. The journey he is asking you to take is death.
Fitzmaurice describes the “talk” in detail:
I am in a bed in the Beacon Hospital. I came in with pneumonia and three days of no sleep and continuous coughing left me exhausted and unable to breathe. Moved into intensive care, I went into respiratory failure, collapsed unconscious and was put on a ventilator.
I now have a tube up my nose and a tube down my throat. One for feeding, one for breathing. Both of which prevent me from speaking. Motor neurone disease prevents me from moving my arms and legs. I communicate with my family through text messages on my phone.
A man has just walked in the door. I have never met him before and he starts to speak to me. He says his name is John Magner, consultant anaesthetist for the ICU. He tells me he has just got off the phone from Prof Orla Hardiman in Beaumont Hospital, after I requested that he ring them to ensure that I was getting the best care for MND in the Beacon.
He tells me that Prof Hardiman has said that they do not advocate ventilation (see panel) in this country for MND patients. That it is time for me to make the hard choice. He tells me that there have only been two cases of invasive home ventilation, but in both cases the people were extremely wealthy.
My mother and my wife start crying in the corner of the room. I look at him but I cannot reply. He looks at me. “This is it now for you. It is time for you to make the hard choice, Simon.” My mother and my wife are now holding each other, sobbing.
Before I continue with excerpts from Fitzmaurice’s essay, people unfamiliar with the Irish health care system might want to know that it’s a single-payer system – overseen by the HSE – Health Service Executive. I haven’t checked around yet, but I am pretty sure that some conservative bloggers will pick this story up and hold it up as an example of “rationing” imposed by a centralized, single-payer system run by the government.
As you’ll see, this is not one of those stories. The barriers faced by Fitzmaurice had nothing to do with policies of the HSE – but had everything to do with the attitudes of medical professionals regarding “quality of life.” More here:
While he is looking at me, my life force, my soul, the part of me that feels like every part, is unequivocal. I want to live. It infuses my whole body to such an extent that I feel no fear in the face of this man. We find out two days later that the home ventilator is covered by the HSE, while the home care package needed to run it can be funded between my family and the HSE. (Emphasis added.)
As he makes clear later, Fitzmaurice and his family feel they’ve gotten terrific support from the HSE – it was the doctors who – to put it mildly – discouraged his choice to live with invasive ventilation. I guess bioethicists would call that encouraging him to make an “end of life” decision – it’s anybody’s guess what they call the decision they didn’t want him to make.
Long story short – Mr. Fitzmaurice is at home, happily enjoying his life with his wife, children and the rest of his family, as this wonderful picture shows:
(The picture above shows Simon Fitzmaurice in bed, attached to his ventilator, with three sons lying beside him)
Read the rest of the article, along with additional material from sources like the Irish Motor Neurone Disease Association, whose spokesperson makes it clear the association doesn’t advocate use of trach ventilation.
I’ll also add that Mr. Fitzmaurice believes that medical professionals in other countries are more supportive of the choice to use invasive ventilation. Maybe, but it seems that many of the people I know who use any kind of breathing assistance up had to bring the issue up themselves – mostly, the options weren’t offered by their physicians.
And, please, please read the rest of the article here. –Stephen Drake
I just did read the article, as a matter of fact, and I must take issue with you about single payer health systems.
The increasing callousness of doctors in the medical system, and those that are supposed to speak for those with diseases such as Motor Neurone Disease, goes hand in hand with the break from traditional doctor as owner of his own practice model common in our parent’s and grandparent’s day.
Doctors are increasing part of the system rather than independent entities engaged in the practice of medicine. As such, they look more to the good of the system, as all the incentives force them to do, rather than to the good of the patient. It even, as in this case, distorts the view of the good.
I am wrapped in strong feelings: rage, empathetic “bravo” – although my disabilities are severe ME/CFS with allergic asthma as “icing” (it preceded the ME by a couple of years at middle age). (And congrats,Stephen on getting this posted. I can relate to “not enough energy”. A researcher/person with CFS, in reviewing an article I wrote, noted that “tired” is to CFS as dynamite is to a birthday candle.
There are times when I am in ME/CFS “fugue” state where I am horizontal with no awareness of the passage of time, mental visual fragments passing in my visual screen.- I am an artist.)
I have been working on making a new word. It shall be premiered here and I welcome any input, refinement of the term:
disabilophobia
Add disabilophobia to
the list:
homophobia
xenophobia
islamophobia
disabilophobia
People being fearful/loathing of disability and people with disabilities shall be described as “disabilophic” or showing disabilophobia. It applies to the doctor in this op ed piece.
We have a right to breathe! We have a right to chose. We have all rights. We fight.
The photo of the author with his kids is perfect. We’ll win.
Mr. Cornett,
As the saying goes, “you are entitled to your opinion, but not your own facts.”
There is nothing in this article to support the idea that the HSE was behind the forced choice doctors attempted to foist on Mr. Fitzmaurice. I know that professionals quoted in the article stated that the HSE couldn’t afford it, but since the HSE does cover invasive ventilation (at least in part), they’re either lying, misinformed, or avoiding the opportunity to admit to their own biases.
It’s easy to look at the past with rose-colored glasses. Through various journal articles, for example, we know that the killing through neglect of disabled infants occurred at hospitals all over the US right up to the 1980s, when the “Baby Doe” regs made the practice one that you couldn’t “brag” about in journals any more.
This is really a great article! It seems to me rare to read an article actually written by the person with a disability — who isn’t representing able-bodied people back to themselves by looking for a cure or a “dignified” death.
Contrast with this piece “How I Helped My Darling Daughter Die,” http://www.dailymail.co.uk/femail/article-1376605/Kay-Gilderdale-How-I-helped-darling-daughter-die.html
I see my name typo with my first comment, sigh.
As a member of the medical profession I do think this is an interesting article, however I’ve a few issues to raise both with article and some of the above comments. I agree that doctors can be seen as paternalistic in such situations, and it’s sometimes tempting for us to assume that our patients will automatically agree with our views. However, doctors’ recommendations in such situations are generally based on experience of the natural history and expected course of a disease; experience that a lay person encountering an illness for the first time often does not have.
Discouraging the use of invasive ventilation in motor neurone disease is not callous, it is not neglect, and it is not euthanasia. We are not talking about withholding food or medication here. We are simply talking about the avoidance of extraordinary measures to prolong life in a disease that we know to be incurable, progressive and ultimately lethal. Invasive ventilation is an extraordinary measure intended for reversible respiratory failure. It requires round the clock nursing care in an ICU setting, and has multiple complications. Once it is begun, discontinuing it is ethically difficult, even if requested by the patient.
Stephen P. Cornett bemoans the change in health care practice since our parents’ and grandparents’ day. The fact is, this issue would not have arisen in his parents or grandparents day as such a patient would simply have been allowed to die. Ventilation, let alone home ventilation, would not have been even entertained (if the technology even existed), and the medical profession took a far more paternalistic approach to decision making back then. As medical science progresses, it is sometimes necessary to ask ourselves whether certain treatments are appropriate in a given setting. Just because we have the ability to do something does not necessarily mean we should.
As regards the HSE providing home ventilation; I work under the HSE. I have never heard of a patient receiving home ventilation, and the author himself admits that only 2 other patients have received it (both extremely wealthy and likely to have paid for it themselves). I can guarantee that the HSE does not routinely finance it, and to do so on a large scale would surely bankrupt them.
Finally, I think it’s extremely unfair of the author to name and publicly criticize doctors who are unable to defend themselves due to patient confidentiality.
To Mark,
What you leave out is that doctors are also heavily influenced by their (and your) own unrecognized prejudices in terms of devaluing people with certain kinds of disability. If you do a search or research literature, I’m sure you’ll find that there’s a fairly consistent pattern of findings in that regard when it comes to the medical profession.
I not so humbly suggest that it is not your job to decide who is a waste of government dollars and who isn’t. And maybe the services you think are so expensive could be done more cheaply than you think. I know of a number of venitlator dependent people in this country who manage with personal care assistants – nurses don’t have to provide *everything*.
Mark,
I disagree strongly about the objective nature of medical recommendations relating to people with disabilities. There is a very consistent body of research regarding the attitudes of medical professionals toward people with disabilities. In every study I know of, medical professionals rate the lives of people with disabilities lower than the individuals do themselves.
I think – in all honesty – you and other professionals have taken too much responsibility onto your shoulders if you feel that part of your job is acting as unofficial financial gatekeepers for the HSE. As this story illustrates, you *don’t* know all the factors and in this case the individual has a family and financial resources sufficient to the task of letting him enjoy being a father and husband for at least a few more years.