As I’m sure you’ve heard by now, the big news coming out of the Academy Awards last night is the mixup regarding the Best Picture winner. Even without that, though, you probably wouldn’t have heard much about a nominated film that brought a bit of bioethics to the Oscars.
Extremis, nominated for Best Documentary Short Subject, highlights the kinds of difficult decisions made every day in intensive care units, and emphasizes the important role of palliative care, especially at the end of life.
The film follows Dr. Jessica Nutik Zitter, an ICU and palliative care specialist at Oakland’s Highland Hospital, as she counsels families facing agonizing choices about whether the treatments and interventions being performed are truly helpful.
It is a truly complex film, not easy to categorize as either difficult or uplifting. It is very difficult to watch in parts. These families are suffering deeply. And it is beautifully uplifting in parts. The members of the medical team care deeply about not only the patients under their care but also about the families and friends of those patients.
Dr. Zitter writes today in Time about the film, and about her goal of raising awareness of palliative care and countering the narrative that our only options are to make use of every treatment no matter how burdensome or suffer in intractable pain at the end of life.
I’ve not seen Dr. Zitter address the physician-assisted suicide debate directly, but this is the same false narrative PAS advocates seize on in promoting their agenda. So I am glad to see this emphasis on palliative care and I’m thankful for whatever attention palliative care gains through this Oscar nomination.
Importantly, though, Dr. Zitter emphasizes that we should not wait for end-of-life crises to arise to begin thinking about — and talking about — what we want as we approach death.
To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing, or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free, and enjoying a glass of Cabernet.
Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values, and share them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.
A few months ago, I wrote briefly about hospice care, which is one very important aspect of palliative care. What I said then about hospice applies to palliative care in general.
The more people who are aware of, volunteer for, and participate in hospice [and palliative care], the better off we will be as a society. And the more we will move toward being a society that truly cares for one another.
Extremis is a very good film, and I commend it to you (it is available on Netflix). Watch it with your family, and discuss and reflect on it together. May it lead you into considering your preferences and values, and sharing them with your loved ones.
It is not an easy film, but it is an important topic. I’m glad it was nominated for an Oscar. Too bad it didn’t win.
Update to the update: the law has gone into effect. The House did not vote on the measure to block it, and the Senate version never left committee (both chambers would have needed to vote to block the bill by Friday, February 17).
The organization that spearheaded the campaign for this law released a statement that in part urged residents of D.C. to be sure to request lethal medications as soon as possible. The etymology of “compassion” is to suffer together or to suffer with another. Physician-assisted suicide is the direct opposite. It is abandoning people in the midst of their suffering. This is heartbreaking.
I wrote earlier this week about efforts in Congress to block a new law allowing physician-assisted suicide in Washington, D.C. At that time it seemed possible although by no means certain that both the House and Senate could vote by the end of the week to stop it.
The Washington Postreports that such a vote by both chambers is “unlikely” to happen, which means that the time for Congress to review this new law will have expired.
Those in Congress who oppose this assisted suicide law are now forming a plan to block its implementation via the power of the purse. That is, they plan to not provide D.C. with the funds it needs to setup and run the law. This is, admittedly, a work-around. Utah’s Rep. Jason Chaffetz is leading the charge on this, and according to the Post, he “has said . . . that he thinks Congress should intervene, no matter what form that action takes.”
We cannot help but be disappointed to see this law go into effect. As we have repeatedly argued, assisted suicide is bad public policy. A study published in the Michigan Law Review, for example, found that in Oregon, guidelines were often not followed by doctors, state oversight failed to “collect the information it [the state] would need to effectively monitor the law, and in its actions and publications [the state] acts as the defender of the law rather than as the protector of the welfare of terminally ill patients.” In addition, overall suicide rates have risen sharply in Oregon since the legalization of physician-assisted suicide. (Herbert Hendin and Kathleen Foley, “Physician-Assisted Suicide in Oregon: A Medical Perspective,” Michigan Law Review, Vol. 106, No. 8 (June 2008), pp. 1625–1626.)
At a more basic level, of course, physician assisted suicide is a violation of the Hippocratic Oath and the commitment to do no harm. Legalization of assisted suicide challenges the integrity of medicine as well as the equality of human life. It corrupts medicine, undermines the viability of suicide prevention efforts by sending a mixed societal message, and threatens the lives and equal societal status of the weakest and most vulnerable among us.
The proper and compassionate approach to suicidal desire—whatever its cause—is compassionate intervention and prevention, not facilitation.
We are watching the situation in D.C. closely, and will bring you updates as it develops.
The Washington Postreports that a House committee has voted to block Washington, D.C.’s assisted suicide law from going into effect. In order for the law to be blocked completely, however, the full House and Senate will have to vote, and will have to do so by Friday because of a 30-day oversight window.
It is at this point unclear whether that will happen.
You may recall that we named Washington, D.C. a loser in last year’s roundup of winners and losers over this very measure. But perhaps that course can yet be reversed.
As a reminder, our documentary short film on the effects of physician assisted suicide legalization remains free to view online.
We will continue to monitor this closely, and bring you any updates as we receive them.
Update: A number of disability rights organizations have released a statement in the wake of this committee vote. It reads in part:
When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for that “yes.” No psychological evaluation is required, putting depressed people in danger.
The highly touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and in the end, even administer the drug—no witnesses are required at the death, so who would know? Many other pressures exist that can cause people with compromised health to hasten their death. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. We all already have the right to good pain relief, including palliative sedation if dying in pain.
The New York Times recently ran an article on ways in which various technologies are being developed and tested with senior adults. The article talks about how aging can be isolating and lonely, and the fact that a shortage of caregivers is looming as the baby boom generation ages. These are among the reasons why researchers are developing technologies that allow seniors to connect with others, that assist them with daily tasks, and that even provide (or substitute for) companionship.
The article leaves out, however, any sense that there are questions to be asked about such companionship technologies, that there might be a need to evaluate how they fit into any larger notion of human flourishing. In fact, the article seems to take the development of these technologies as an unmitigated good: problem, technological solution, done.
What I’m trying to get at is a sense of what true human flourishing looks like as we age. What role is appropriate for technology to play in that? What is required of each of us with respect to our elders? Isn’t at least worth asking whether, by developing some of these technologies that mimic or substitute for companionship, we are simply abandoning people (to put it in rather stark terms)?
Someone who has raised and considered these questions is Sherry Turkle, the Director of MIT’s Initiative on Technology and Self. As a psychologist, she has done a great deal of study on the role of technology in our lives, and particularly on the role of technology as (substitute) companionship for the elderly.
Turkle’s previous book, “Alone Together,” was a damning report on human relationships in the digital age. By observing people’s interactions with robots, and by interviewing them about their computers and phones, she charted the ways in which new technologies render older values obsolete. When we replace human caregivers with robots, or talking with texting, we begin by arguing that the replacements are “better than nothing” but end up considering them “better than anything” — cleaner, less risky, less demanding. Paralleling this shift is a growing preference for the virtual over the real. Robots don’t care about people, but Turkle’s subjects were shockingly quick to settle for the feeling of being cared for and, similarly, to prefer the sense of community that social media deliver, because it comes without the hazards and commitments of a real-world community. In her interviews, again and again, Turkle observed a deep disappointment with human beings, who are flawed and forgetful, needy and unpredictable, in ways that machines are wired not to be.
Notably, Turkle is not quoted or even mentioned in the NYT article. When I tweeted about this absence this morning, the author of the NYT piece replied asking why it didn’t count that she had quoted Joseph Coughlin, director of the AgeLab at MIT. It’s not that it did or did not count, but rather that neither he nor anyone else in this article is raising these kinds of issues about the use and place of technology in or for companionship or caring.
These issues are essential to our thinking about how it is we best care for one another. And that is what the discipline of bioethics is ultimately about—how do we best care for one another, particularly in the face of disease and suffering, conditions that often accompany aging.
Yes, it can be difficult and awkward and unpredictable and even painful to care for one another—and, I would add, to allow ourselves to be cared for by others. But sometimes part of being human is doing things that are difficult and awkward and unpredictable and even painful. And when we hand that over to—or pass it off on—technology, we may just be handing over something that is in fact vital to true and full human flourishing, if we are not careful.
And we are most certainly not being careful about what we hand over to technology.
What role is appropriate for technology to play in the ways in which we care for one another? What is required of each of us with respect to each other? Are we allowing technology to substitute for human interaction in ways that are ultimately unhelpful and/or even unhealthy?
Similar questions about the place of technology in the larger scheme of life are also at stake in debates over human-animal hybrid or chimeric embryos, which I wrote about yesterday.
These are not easy questions, and I don’t pretend that there are easy answers. But they are questions that deserve to be asked, to be considered, to be held up the light of day and examined.
The Washington Post is reporting that scientists have for the first time created an embryo that is part human and part pig. The long-term goal is to provide organs for transplant, given that the need for organs always runs well ahead of the availability of organs.
Such a hybrid or chimeric embryo raises many, many ethical issues issues. But notice the ethical justification is given is simply, “this may produce benefits.”
But Vardit Ravitsky, a bioethicist at the University of Montreal’s School of Public Health, said that the two studies published this week could help make a case for further human-animal chimera research by demonstrating the field’s potential benefits.
There is so much more to be considered in the realm of bioethics—on this or any other issue—than simply whether this might produce benefits.
In fact, if your ethical starting point is benefits, then your ethics has already gone off course. On this issue, there are deep questions about what it means to be human and what it means to be a non-human animal. What limits are appropriate in separating one from the other, and why? What is unique and distinctive, what deserves to be protected, and why? To frame it another way, in pressing ahead with this kind of research, are we giving up or violating something about our very humanity, about, as we often say, our shared human future?
And this is, as I say, only the beginning.
This is breaking news and we will be looking into and following it carefully. Stay tuned.
Neuroscientist and animal advocate Dr. Lori Marino comes at the issue from an angle slightly different than mine, but comes to a similar conclusion. From “We’ve created human-pig chimeras — but we haven’t weighed the ethics:”
The possibilities have many researchers giddy with excitement. But they also raise serious ethical dilemmas about the moral status of these part-human animals. Chimera test subjects must be human enough to serve as effective models for health research, but not so human that they qualify for protection from this research altogether.
We all want to alleviate human suffering. But the need does not dictate the solution.
Almost as if to take up that admonition, The New York Times Magazine recently ran a lengthy profile piece of Dr. B.J. Miller, a palliative care physician at “a small, quirky hospice in San Francisco,” the Zen Hospice Project.
Dr. Miller’s personal story of becoming a tripple amputee during his college years informs his views on suffering and his approach to patient treatment. The article relays Dr. Miller’s story, the story of the Zen Hospice Project, and the story of Randy Sloan, a 27 year-old man diagnosed with terminal cancer.
As I say, it’s a lengthy piece, so there are a number of items I could draw out of it. But I’d like to share with you a few things that have been on my mind since I read it.
The key questions on which Dr. Miller and Zen Hospice focus are: “What is a good death? How do you judge? In the end, what matters?”
Indeed. We each, individually, have thoughts on what the answers to these questions are. Increasingly, we are seeing the ideas of autonomy and control dominating the conversations around end-of-life issues, particularly in political debates over the legalization of physician-assisted suicide. Combined with the emphasis on autonomy and control is the idea that suffering must be avoided or eliminated. Thus, physician-assisted suicide is held out as the solution: assert autonomy, maintain control, avoid suffering.
As the name indicates, the Zen Hospice Project is influenced by Buddhist views, which include the idea that suffering is a part of life.
There’s an emphasis on accepting suffering, on not getting tripped up by one’s own discomfort around it.
Miller is not Buddhist, but in the midst of his experience of losing parts of three limbs, he arrived at a similar perspective:
Miller refused, for example, to let himself believe that his life was extra difficult now, only uniquely difficult, as all lives are. He resolved to think of his suffering as simply a “variation on a theme we all deal with — to be human is really hard,” he says . . . Don’t we all treat suffering as a disruption to existence, instead of an inevitable part of it? He wondered what would happen if you could “reincorporate your version of reality, of normalcy, to accommodate suffering.” As a disabled person, he was getting all kinds of signals that he was different and separated from everyone else. But he worked hard to see himself as merely sitting somewhere on a continuum between the man on his deathbed and the woman who misplaced her car keys, to let his accident heighten his connectedness to others, instead of isolating him.
In the end, here is what I wonder: How can those of us who agree with Dr. Miller that “to be human is really hard,” better stand against the increasingly popular view that to be human is to be autonomous, to be in control, and thus to avoid suffering?
I am not saying that autonomy and control are not important or do not have their place. I am saying that they need to be balanced against other parts of our lives, and should not be pursued as ultimate goals. We need to maintain a realistic perspective that yes, suffering does disrupt our sense of control and it may rob us of some of our autonomy. Proper palliative care recognizes this, and seeks to allow patients to maintain as much autonomy and control as possible without falling into the view that all suffering simply must be eliminated.
What is needed is a deep societal change of mind and attitude. How might this come about? For one, we continue to educate people on the dangers of assisted suicide, and on the misplaced priorities that are driving it. And we continue to point to helpful and hopeful resources like palliative care and the Zen Hospice Project.
There is much work ahead. My humble suggestion is that there are pointers toward a helpful and healthy direction in this lenthy NYT Magazine piece.
The Boston Globe reports that the Massachusetts Medical Society is planning to conduct a survey of its 25,000 members in order to determine their perspectives on either “medical aid in dying” or “physician-assisted suicide.”
Deciding what to call it seems to be one of the main sticking points.
The doctors even disagreed about what words to use to describe the movement. Supporters preferred to call it “medical aid in dying” and emphasized the protracted suffering of terminally ill patients. But critics prefer the term “physician-assisted suicide,” and they emphasized that doctors are entering a slippery slope if they are allowed to prescribe fatal drugs to hasten a patient’s death.
Dr. Barbara Rockett, a past president of the Massachusetts Medical Society urged her colleagues to wait until the American Medical Association completes its own national survey.
She also said she disapproves of the term “medical aid in dying,” which she thinks attempts to neutralize the profound ethical issues for doctors.
“Let’s call it what it is — physician-assisted suicide,” she said.
But supporters of this option say “suicide” is an emotionally loaded — and inaccurate — term because terminally ill patients who seek this alternative are not suicidal, but want to live.
As a bit of an aside, it is interesting that no particular supporter is named as holding the view that “terminally ill patients who seek this alternative are not suicidal, but want to live,” which is, at best, poorly worded.
Dr. Mary Louise Ashur, an internal medicine doctor in Needham who spoke largely against the resolution, said advances in palliative care must be front and center in this debate, and this reflects the medical community’s ongoing compassion toward the dying.
This is absolutely correct. So much of the reporting and writing on end of life issues simply ignores (a) the basic fact that palliative care even exists, and (b) the many advances that have been made in the field. Simply put, there is much that can be done to care for those with terminal illness, to support patients and their caregivers, and to relieve both the pain and the many forms of suffering that accompany the process of dying. Much more could be said on this, but I will save that for another day.
In the end, the survey was approved
The specific questions in the poll — and who will oversee it and how it will be unrolled — have yet to be finalized, said society spokesman Rick Gulla. Meanwhile, both sides are staying in close touch with the medical society to hear details of the survey.
Said Rockett: “How they word this will be important.”
Indeed, indeed. We must talk about this openly and fully if we are to decide well on how to live at the end of life.
With Dr. Rockett, I say, “Let’s call it what it is — physician-assisted suicide.”
It creates human embryos for destruction. One proposal expressly calls for only male embryos to be transferred for possible pregnancy, meaning the female embryos would be . . . well, we’re not told. But the options are indefinite frozen storage or destruction.
In this selection process we see the prospect of eugenics, that is, screening to select just the right egg donors, screening to select only the correct embryos.
And these changes will affect not only the embryo and resulting child being created, but also that child’s children, and so on.
Doug Wallace, the head of the Center for Mitochondrial and Epigenomic Medicine at the Children’s Hospital of Philadelphia says that this “could mean a therapy that might change the DNA of tens of thousands, maybe hundreds of thousands, of babies conceived by this method. That would have a real impact on the long-term future of society, Wallace adds, and we don’t yet fully understand all of the implications.”
Let that sink in.
Caution simply is not enough. Primum non nocere. First, do no harm.
The editor-in-chief of the Journal of American Physicians and Surgeons, Lawrence Huntoon, M.D., Ph.D., addresses physician assisted suicide in the winter edition of the journal. His goal is to encourage physicians and the medical associations of which they are a part to hold firm to medicine’s Hippocratic roots and continue to oppose assisted suicide measures.
Dr. Huntoon goes on to describe the insidious ways in which physician-assisted suicide slowly expands
“Physician-assisted suicide and euthanasia are initially sold to the public as completely voluntary acts of compassion and ‘death with dignity,’” writes Dr. Huntoon, but “once in place, the next step is coercion.”
“The elderly and those suffering from severe debilitating illnesses, who may be depressed and lonely and who may not have the will or the energy to fight back to preserve their lives, are at risk,” Dr. Huntoon warns. “And if experience in other countries with physician-assisted suicide and euthanasia is any indication, those eligible for death-by-physician will expand to include the healthy and the very young as well.”
He is exactly right!
We join Dr. Huntoon in calling on physicians and medical associations to stand firm in complete and total opposition to physician assisted suicide.
Happy New Year! Because New Year’s Day falls on Sunday this year, many will have a three day weekend, so I wanted to gather some resources you might want to read or watch, if you haven’t already.
First, though, here is a quick update on our year-end fundraising efforts: we need to raise $25,000 by the end of 2016, and so far we’ve received $18,000. In the video below, Jennifer gives a fuller update. Please help us close the final $7,000 gap today.
We also have several ebooks available, also FREE of charge. What women don’t know about their eggs can sometimes lead to infertility or even grave illness. Every day, women in America make choices about what to do with their bodies and their futures—and many of them suffer tragedies as a result of the wrong choices. To protect our children, we need to make sure they know the health factors involved in their decisions. Here are Five Things Moms Should Tell Their Daughters about their eggs.
Since we released Breeders: A Subclass of Women?, we’ve been contacted by many women who have served as surrogates. This ebook, My Experience as a Surrogate, contains one woman’s first-person account of her surrogacy experience. While it’s a short read, it’s a powerful and important one. I encourage you to read it.
Since we first released Eggsploitation, seeking to expose the truth about egg ‘donation,’ we have been contacted by many women who want to share the story of their experience. We gathered these stories together in one place for you to read and share: Egg Donor Stories.
All six of our films are available to watch online. Anyone up for a binge-watch?
Compassion and Choice DENIED
Compassion and Choice DENIED explores the effects efforts to legalize physician assisted suicide have on those who are living with terminal illness but who do not want “aid in dying.” The film features Stephanie, a wife and mother living with a terminal diagnosis. She has experienced first-hand the dangerous effects of California’s recent legalization of physician assisted suicide.
As she deals with insurance denials of treatment her doctor ordered and changes in the tone of conversations in various support groups, her story highlights the ways in which the difficulty of living with a terminal diagnosis is compounded by the growing cultural acceptance of the notion of assisted suicide. This negatively changes the ways in which people with terminal illnesses are thought of, and the ways in which they think about themselves.
But hers is also a story of hope. Her hope is that if we can change our way of thinking about the process of dying and those who are dying, we will be able to provide the resources people truly need to be supported and well cared for at the end of their lives.
This film is available to watch for FREE, in full via Facebook and YouTube.
Maggie’s Story is an all new documentary short (22 min) that follows one woman’s journey of learning about “helping” others have a child they desperately want, what she discovered in becoming an egg donor, and the consequences that followed. Maggie was told how special she was, but she was never informed of the risks egg donation posed to her own health and well being. She was used repeatedly for others’ gain, but when things turned bad, she was left on her own to navigate tests, treatments, surgeries, and an unknown prognosis.
Surrogacy is fast becoming one of the major issues of the 21st century—celebrities and everyday people are increasingly using surrogates to build their families. But the practice is fraught with complex implications for women, children, and families. What is the impact on the women who serve as surrogates and on the children who are born from surrogacy? In what ways might money complicate things? What about altruistic surrogacy done for a family member or close friend? Is surrogacy a beautiful, loving act or does it simply degrade pregnancy to a service and a baby to a product? Can we find a middle ground? Should we even look for one?
Thousands of donor-conceived people have a deep longing to know who they belong to, where they come from, and who they look like. What is it like to grow up not knowing who your biological father is or if you have any siblings? What is it like to find out that the man you thought was your dad is not your biological father, that your true biological father donated his sperm and is known only by a number? How does it impact your self-perception, the choices you make, and your view of life and the world? Donor-conceived people are demanding answers to these basic questions about their origins, their lives, and their identities.
The infertility industry in the United States has grown to a multi-billion dollar business. What is its main commodity? Human eggs. Young women all over the world are solicited by ads—via college campus bulletin boards, social media, online classifieds—offering up to $100,000 for their “donated” eggs, to “help make someone’s dream come true.” But who is this egg donor? Is she treated justly? What are the short- and long-term risks to her health? The answers to these questions will disturb you.
Stem cell research: A potential miracle cure for diseases or a form of biological colonialism? The debate still rages over this controversial science. Supporters argue that it is our moral duty to pursue scientific progress that provides healing hope for humanity. Detractors argue that the ends don’t justify the means in harvesting some human life to save others. This documentary seeks to educate the public on the scientific basics of stem cell research and the moral issues surrounding it as we enter the 21st century.
All of these resources were developed because of your generosity. As I write, we need to close a $7,000 end-of-year funding gap. Please give today! Help us start 2017 strong. Help us keep making resources like these. Thank you!!
The Center for Bioethics and Culture is a non-profit 501(c)(3) public benefit educational organization. All gifts are tax-deductible.