The ethics of communication – whether
over-communication or under-communication – have been in the news over the last
few months. WikiLeaks , the Murdoch press affair in Britain, and in Canada the
public’s right to be informed of the details of the health status of the leader
of the federal opposition, Jack Layton, have all made headlines. A recent
incident caused me to look at the ethics that should govern communications in a
very everyday context, that of hospital patients’ committees communications to
patients. Here’s the story.

The patients’ committee of a teaching
hospital recently held its annual dinner meeting. They invited me to be their guest
speaker and asked me to talk about “ethics issues at the end-of-life, in
particular, the current debate on the controversial issue of legalizing
euthanasia in Quebec”. I agreed to lead an interactive discussion, which
everyone engaged in enthusiastically.

After the dinner, the committee secretary
wrote a report of the discussion for the hospital’s E-newsletter, a copy of
which she sent to me for approval, which I gave. The report, which I quote with
the permission of its author and other executive members of the committee,
started by saying that I am “strongly opposed” to euthanasia, which is correct.
It continued:

[Somerville]
proposed that one question we need to explore is why now, after seeing
euthanasia as ethically wrong for millennia, Quebec society would see
legalizing it as a good idea? “Societies like ours have been saying for years
and years that euthanasia is ethically wrong. Why would we change our minds
now?” she asked. She suggested that perhaps one reason is that Quebec “has made
a radical change from a profoundly religious society to a militantly secular
one,” and the traditional ethical safeguards are no longer operative.

The reasons [for current calls to
legalize euthanasia], Dr. Somerville explained, lie beyond dealing with the
suffering of terminally ill individuals. People have always become terminally
ill, suffered, and we could kill them, so there’s nothing new there. Indeed,
there is vastly more we can do now than in the past to relieve their suffering.
What has changed are people’s claims to rights to autonomy and
self-determination. People [claim they] have a right to control their lives and
death.

Dr. Somerville spoke of the
situation in the Netherlands, where euthanasia has been legalized for over
thirty years. She explained that the Dutch have expanded the criteria for
allowing euthanasia and that government sponsored studies show that there is
some abuse of the practice, which could also happen here in Quebec. There are
reports that some elderly Dutch people are afraid to go into their own
hospitals, because they fear being euthanized and that some are crossing the
border to go into the German hospitals, where, as a result of the Nazi legacy,
euthanasia is rejected. “In short, euthanasia involves physicians killing their
patients; it is presently the crime of murder [in Canada] and should remain
such,” concluded Dr. Somerville.

This article for the E-newsletter also
explained that the “Patients’ Committee is a group dedicated to patient
advocacy with particular focus on issues that affect patients at the …
Hospital. The committee includes patients as well as representatives for
physicians, nurses, and staff. The committee works closely with [the hospital]
ombudsman … to deal with patient complaints and also focuses on issues
[affecting patients]. … Patient education and advocacy issues are an
important part of the committee’s agenda.” This would seem to strongly support
reporting on educational events organized by the committee. Members of the
committee have made clear to me that they believe it is important that patients
are informed about the issues in the euthanasia debate, as, if legalized, it
could affect many of them. As the current court challenges in British Columbia to
the criminal prohibition on assisted suicide show, including that by the Farewell
Foundation, this is not just a theoretical concern.

A short time later, I received an email
from the Patients’ Committee’s chair explaining that the hospital’s public
relations office had decided that “everything written about what Margaret
Somerville said will be omitted [from the E-newsletter report of the dinner],
because it is very controversial and the [office] will not print anything
controversial!” In response, one committee member suggested that “we allow them
to publish a blurb [just] about our committee, the dinner, and the fact that
Margaret Somerville was the speaker”. The chair sent me a copy of her response
to this proposal: “At first, I absolutely refused and [the secretary] did too.
I tend to react strongly to anything that appears to be censoring. However, I
now feel this is not my decision to make. I leave the decision to Margaret.”

So it seems they’ve placed the ball is in
my court. Now, I agree that my use of the words killing and murder are
confrontational and I’d be less likely to use them in writing for publication,
than in speaking, although I’ve done both. And I could have been asked whether
I was willing to change these words to something less dramatic. But I’m not
sure this would have solved the problem. The email from the PR people indicates
that they regard the topic, itself, as too controversial for their newsletter.

I understand that hospital public relations
people need to stay on good terms with as many of their supporters as possible
and, almost certainly, some of them agree with legalizing euthanasia and might
object to my comments. But, as I said in my reply to the email from the
committee’s chair,

this is indeed worrying, way beyond
the refusal to circulate any report of my simple remarks, but I am not
surprised. It doesn’t “appear to be censoring”, as you query – it is censoring,
although I can understand that the [hospital’s] PR office doesn’t want to
offend anyone.

And if something
that is a factual report of a discussion can’t be published, when will we face
the reality that the discussion itself will not be allowed to take place? Such
censorship is of grave concern in our universities, including McGill, which try
to prevent it. … And such censorship is insidious, because it need not be overt
and direct. Its presence causes people to engage in self-censoring in order not
to be shunned or shamed, or out of fear or loss of promotion and privileges, or
even loss of friends.

Apropos the
current incident, I have long taught my students that many ethical mistakes are
made when an ethical issue is taken over as a PR or communications issue and
wrongly dealt with. What starts as one ethical problem is often spin-doctored
into many.

So where should we draw the line,
ethically, in such situations? Was the topic “the problem”? Was it the words I
used? Was it my reputation for being “controversial”? Or was it something else?
And while the PR people are acting fully within their rights, is their decision
ethically acceptable? Is it wise, in the larger scheme of things?

I’m sure many people will see my writing
this article as a gross overreaction to a minor restriction, well within the PR
office’s realm of discretion and rights, the latter of which is correct. But
some of the most serious threats to basic freedoms, such as freedom of speech,
will not come in the context of international incidents, but in small everyday
restrictions, such as this one, when the rest of us just accept and normalize
them.

And while this patients’ committee tells me
it is not restricted by its hospital administration in raising its concerns, is
the freedom to report of other such committees limited in even more worrying
ways that could place patients at risk? The job of the hospital’s PR office is
to present the hospital only in the best light, and hospital administrators
usually try very hard to avoid bad publicity, goals which could be in conflict
with providing information that patients’ committees believe should be made
public.

Moreover, a patients’ committee is a safeguard
mechanism that operates through consultation and involvement in decision making
and bringing to people’s awareness matters of concern. We should keep in mind
that it’s much more dangerous to have safeguards that are ineffective, than to
have no safeguards at all. In the former case, everyone assumes all the
necessary checks and balances are operating, when they are not. In the latter,
they know they have to be on their guard.

Censorship is the wrongful suppression of
communication, distributing hacked material the wrongful promotion of
communication. I hope that it might stimulate some insights for people to
recognize that these undertakings are two sides of the same coin and,
sometimes, it can be a difficult ethical judgment to decide whether it’s wrong
to withhold a given communication or wrong to circulate it. Both can be
ethically wrong and both can be ethically right.

Margaret Somerville is
director of the McGill Centre for Medicine, Ethics and Law in Montreal.

Margaret Somerville is Professor of Bioethics at the University of Notre Dame Australia School of Medicine (Sydney campus). She is also Samuel Gale Professor of Law Emerita, Professor Emerita in the Faculty...