The paradox and complexity of intolerable suffering

Intolerable and hopeless (meaning without prospect of improvement) suffering is an eligibility criterion for euthanasia/assisted suicide in the Netherlands, Belgium, and Canada.  Despite having been used as such a criterion for decades (at least in the Netherlands; shorter period in other countries), it is still widely debated as to its meaning and applicability as an operational criterion.

A recent paper raises (again) some important issues regarding this criterion.  In that paper by Dr. Thienpont and her colleagues from Belgium, they report on a qualitative analysis of what one might call ‘testimonies of suffering’ of over two dozen patients who requested EAS based on psychiatric disorders.

One patient is quoted as follows:

‘…Moreover, the people around you cannot believe that you want to die, because you’re looking so good, so no one would allow you to die. So when I finally got the permission to die, that was a huge relief. [ … ] I have to admit that since my request to die was considered to be acceptable, I’m experiencing better moments and I’m also in doubt now. I’m still in therapy and there we discuss other available options.’ (woman, 52 years old)

The authors of the paper quote another patient, as an example of how a patient’s suffering is compounded by “friends, family and/or physicians neglecting or underestimating these struggles and suffering, or ‘sweeping aside’ (ignoring) the patient’s request for euthanasia.”

‘Saying that someone is working, studying and experiencing a good home situation – and therefore asking what the problem is – is a commonplace platitude that undermines my readiness to open up, as you’ve noticed earlier. It’s a question that I can expect from non-therapists and which detracts from the fact that I suffer unbearably. Would that also mean that a cancer patient, who works and experiences a good home situation, can’t suffer unbearably? Work or study isn’t sufficient, as feeling at home in this world means so much more.’ (woman, 30 years old, after consultation)

I think there are several things we can learn from these patients. But first some background:  According to a previous paper by the same authors (Thienpont et al, BMJ Open 2015), these patients had been deemed to be suffering intolerably and also without prospect for improvement due to their conditions being treatment resistant. Thus, they met two of the crucial eligibility criteria for euthanasia in Belgium.  In that paper, the authors reported that 16% (8 of 48) of persons granted approval for EAS changed their minds, like the first patient described above.

The first notable point is that even though these patients were deemed to have suffering that was intolerable and irremediable, it turned out that their suffering did become bearable and, furthermore, we can identify a cause.  The cause, it turns out, was not a new medication or ECT or other treatment.  It was the communication to them that they qualified for EAS.  Words did the work.

Second, it seems a paradox that what makes the ‘intolerable’ suffering tolerable is, in effect, the recognition by someone else that one’s suffering is intolerable.  Yet, from a psychological perspective, this is not a paradox; it is a readily recognizable phenomenon for experienced clinicians.  For some, such as the patient described above, a crucial part of suffering intolerably is the sense that no one understands how one feels.  Suffering is solitary. What makes it worse, and sometimes unbearable, is the aloneness associated with it. When this aloneness is ameliorated by helping a patient feel that her suffering has been understood, it has a significant therapeutic effect.

Third, we should be humble about how we use the term ‘intolerable.’  Although it seems to imply a kind of magnitude, like a weight that is too much to bear, the metaphor is misleading. Instead, intolerability is a kind of evaluation, a judgment that a suffering person makes.

Why does this matter?  An overwhelming weight seems like something that cannot be remediated without directly reducing the weight, such as changing the course of the psychiatric disorder. That implies that the only way the suffering can be reduced is by first ‘curing’ the illness. But intolerability as a judgment or an evaluation–or even as a construal about one’s situation–can itself be ameliorated even if the ‘weight’ is not first lessened.  It turns out that there are ways to help people judge their previously unbearable ‘weight’ is not as unbearable as they thought.  The above case describes how this can happen.

What are the implications of these points?  I think at minimum, we need to step back and recognize how complex a concept intolerable suffering is. Regardless of where one stands on the legality of EAS, it must be recognized that this is a concept that we do not fully understand.  We can try to tame this complex concept with a shallow and vacuous definition but this simply brushes aside the difficulty.  It is a puzzle how a concept that is so poorly understood can serve as an eligibility criterion for a decision as major as whether one continues to live or not.





Heterodox Academy

I recently joined an organization called Heterodox Academy.  The website describes it as:

Heterodox Academy is an association of professors and graduate student affiliates who have come together to express their support for increasing viewpoint diversity—particularly political and ideological diversity—in universities.

The membership is ideologically and politically diverse, yet united by the above mission.  I doubt if I’ll ever post anything on their site, but it is refreshing to see that academics from different political perspectives coming together to uphold a vision higher than just advocating one’s own views.

The smartest voice in health news is a non-profit website that “evaluates health care journalism, advertising, marketing, public relations and other messages that may influence consumers and provides criteria that consumers can use to evaluate these messages themselves.”  Since it is independent and serves the public interest in an arena that is dominated by very powerful interested parties–some of whom are more open about serving their own (and their stockholders’) interests and others who are less open about their conflicts of interest (grouped all together:  pharmaceutical and device industries; health insurers; health providers; hospitals; and academic research centers)–they have to rely on foundations and private donations.  So if you are in the giving mood, I recommend this excellent website.  (FYI, I have no connection whatsoever with this website, except I learn a lot from it.)

Rilke and bioethics

My colleague Ray De Vries used a poem by Rainer Maria Rilke in a recent talk.  The translation is by Anita Barrows and Joanna Macy and can be found here.

Orpheus, do you hear
the new sound
droning and roaring?
Many now exult in it.

Though the Machine
insists on our praise,
who can listen
with all this noise?

See, it rolls over everything,
weakening us
and taking our place.

Since its strength is of our making,
why can’t it serve
and not possess us?

Sonnets to Orpheus I, 18

Americans want a say in what happens to their donated blood and tissue in biobanks

[The following article was written by my collaborators Ray De Vries and Tom Tomlinson, and originally published in The Conversation]

Raymond G. De Vries, University of Michigan and Tom Tomlinson, Michigan State University

The last time you went to a hospital, you probably had to fill out forms listing the medications you are taking and updating your emergency contacts. You also might have been asked a question about what is to be done with “excess tissues or specimens” that may be removed during diagnosis or treatment. Are you willing to donate these leftover bits of yourself (stripped of your name, of course) for medical research?

If you are inclined to answer, “Sure, why not?” you will join the majority of Americans who would agree to donate, allowing your leftovers, such as blood or unused bits from biopsies or even embryos, to be sent to a “biobank” that collects specimens and related medical information from donors.

But what, exactly, will be done with your donation? Can the biobank guarantee that information about your genetic destiny will not find its way to insurance companies or future employers? Could, for example, a pharmaceutical company use it to develop and patent a new drug that will be sold back to you at an exorbitant price?

These questions may soon become a lot more real for many of us.

Precision medicine, a promising new approach to treating and preventing disease, will require thousands, or even millions, of us to provide samples for genetic research. So how much privacy are we willing to give up in the name of cutting-edge science? And do we care about the kinds of research that will be done with our donations?

President Barack Obama makes remarks highlighting investments to improve health and treat disease through precision medicine on January 30, 2015.
Larry Downing/Reuters

Precision medicine needs you

In January 2015, President Obama announced his “Precision Medicine Initiative” (PMI), asking for US$215 million to move medical care from a “one size fits all” approach to one that tailors treatments to each person’s genetic makeup. In his words, precision medicine is “one of the greatest opportunities for new medical breakthroughs that we have ever seen,” allowing doctors to provide “the right treatments at the right time, every time, to the right person.”

The PMI is now being implemented, and a critical part of the initiative is the creation of a “voluntary national research cohort” of one million people who will provide the “data” researchers need to make this big jump in medical care. And yes, those “data” will include blood, urine and information from your electronic health records, all of which will help scientists find the link between genes, illness and treatments.

Recognizing that there may be some reluctance to donate, the drafters of the initiative bent over backwards to assure future donors that their privacy will be “rigorously protected.” But privacy is not the only thing donors are worrying about.

Together with our colleagues at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan and the Center for Ethics and Humanities in the Life Sciences at Michigan State University, we asked the American public about their willingness to donate blood and tissue to researchers.

Data from our national survey – published in the Journal of the American Medical Association – reveal that while most Americans are willing to donate to biobanks, they have serious concerns about how we ask for their consent and about how their donations may be used in future research.

What are you consenting to?

We asked our respondents – a sample representative of the U.S. population – if they would be willing to donate to a biobank using the current method of “blanket consent” where donors are asked to agree that their tissue can be used for any research study approved by the biobank, “without further consent from me.”

A healthy majority – 68 percent – agreed. But when we asked if they would still be willing to give blanket consent if their specimens might be used “to develop patents and earn profits for commercial companies,” that number dropped to 55 percent. Only 57 percent agreed to donate if there was a possibility their donation would be used to develop vaccines against biological weapons, research that might first require creating biological weapons. And less than 50 percent of our sample agreed to donate if told their specimen may be used “to develop more safe and effective abortion methods.”

You may think that some of these scenarios are far-fetched, but we consulted with a biobank researcher who reviewed all of our scenarios and confirmed that such research could be done with donations to biobanks, or associated data. And some scenarios are real. For instance, biobanked human embryos have been used to confirm how mifepristone, a drug which is used to induce miscarriages, works.

Trust in science is important

Should we take these moral concerns about biobank research seriously? Yes, because progress in science and medicine depends on public trust in the research enterprise. If scientists violate that trust they risk losing public support – including funding – for their work.

Henrietta Lacks.
Oregon State University/Flickr, CC BY-SA

Witness the story of the Havasupai tribe of Arizona. Researchers collected DNA from members of the tribe in an effort to better understand their high rate of diabetes. That DNA was then used, without informing those who donated, for a study tracing the migration of Havasupai ancestors. The findings of that research undermined the tribal story of its origins. The result? The tribe banished all researchers.

Rebecca Skloot’s best-seller, “The Immortal Life of Henrietta Lacks,” revealed the way tissues and blood taken for clinical uses can be used for purposes unknown to the donors.

In the early 1950s, Ms. Lacks was unsuccessfully treated for cervical cancer. Researchers harvested her cells without her knowledge, and after her death they used these cells to develop the HeLa cell line. Because of their unique properties, Hela cells have become critical to medical research. They have been used to secure more than 17,000 patents, but neither she nor her family members were compensated.

In a similar case, blood cells from the spleen of a man named John Moore, taken as part of his treatment for leukemia, were used to create a patented cell line for fighting infection. Moore sued for his share of the profits generated by the patent, but his suit was dismissed by local, state and federal courts. As a result of these and similar cases, nearly all biobank consent forms now include a clause indicating that donations might be used to develop commercial products and that the donor has no claim on the proceeds.

Researchers can ill afford to undermine public trust in their work. In our sample we found that lack of trust in scientists and scientific research was the strongest predictor of unwillingness to donate to a biobank.

Those who ask you to donate some of yourself must remember that it is important not only to protect your privacy but also to ensure that your decision to do good for others does not violate your sense of what is good.

The “Proposed Privacy and Trust Principles” issued by the PMI in 2015 are a hopeful sign. They call for transparency about “how [participant] data will be used, accessed, and shared,” including “the types of studies for which the individual’s data may be used.” The PMI soon will be asking us to donate bits of ourselves, and if these principles are honored, they will go a long way toward building the trust that biobanks – and precision medicine – need to succeed.

The Conversation

Raymond G. De Vries, Co-Director, Center for Bioethics and Social Sciences in Medicine, University of Michigan and Tom Tomlinson, Chair Professor, Michigan State University

This article was originally published on The Conversation. Read the original article.

Testimony on Psychiatric PAD before the Canadian Senate Committee on Legal and Constitutional Affairs

The Canadian Parliament is debating a bill regulating physician aid in dying.  The deadline is early June 2016. On May 11, 2016, I testified before the Senate Committee on Legal and Constitutional Affairs, focusing on the policy aspects of psychiatric physician aid in dying.

I was one of three witnesses in the session.

Navigational guide:  My testimony begins at approximately 16:38 with a personal statement. Most of the hour is taken up by a Dr. Derryk Smith, a psychiatrist from Dignity in Dying Canada.  He is a forceful advocate of making available medically induced death to persons suffering from psychiatric disorders.

I provide a counterbalance to some of the assertions made by Smith in a closing set of comments at 17:26.