Many factors in our political and cultural climate have contributed to an increased interest among mainstream Americans for the Dignity in Dying movement.  Organizations such as Compassion and Choices,  Death with Dignity, and Final Exit Network have worked hard to get out their various messages, but so have many citizens who would be unlikely to join any of these organizations, yet wish to clarify their positions on end-of-life issues with their families and physicians.  This is a growing movement that is progressive, reasonable, and hopeful, especially considering the capacity of medicine  to prolong life, even when it can no longer offer patients better quality of life.

Affordable Care Act

The Affordable Care Act of 2010 (ACA) has brought some of these end-of-life issues into the cultural landscape.  Both the supporters and the detractors of this legislation are concerned that an overwhelming percentage of medical costs occur in the last few weeks and months of a person’s life.  President Obama dropped the provision for Medicare coverage of end-of-life consultations, mainly because it threatened passage of the very important ACA.Those who oppose this clause, primarily conservatives who see it as a threat to right-to-life, eventually will have to face the fact  that a consultation between patient (if possible), the family, and physicians will almost certainly ease the suffering of everyone involved, even if the only outcome is a better understanding of the situation.  These discussions take time, and physicians should be compensated for their time and expertise. The provision does not mandate that any family has to have this guided discussion, simply that Medicare will cover certain costs, if they decide to go ahead. 

Movies and TV

Movies and television shows, as well, have explored end-of-life issues and helped us see them in greater perspective. PBS’ Frontline has presented several shows on this topic, most recently a skillfully done inquiry with interviews of patients, families, and physicians from intensive care departments in New York City. In 2009, HBO presented a documentary on Dr. Jack Kevorkian called You Don’t Know Jack, featuring Al Pacino. Later this month [May 26, 2011] HBO will feature another documentary, How to Die in Oregon, which looks into the history and realities of the first state to pass a Death with Dignity Act.  This film has won great acclaim wherever it has been shown, mainly at film festivals.

Terminology

This would be a good place to clarify terms that are often misunderstood.  For the purposes of this piece, “euthanasia” means that someone acts in such a way to cause another person’s death, in response to the written or understood request of that person.  This is what Jack Kevorkian did when he inserted an IV line into a man who asked for help, a man totally paralyzed by advanced ALS (Lou Gehrig’s disease).  Kevorkian deliberately filmed this procedure and allowed 60 Minutes to show it, resulting in his conviction and prison term. The Michigan court convicted him of manslaughter for “assisting in suicide,” a felony.   Even in Switzerland and the Netherlands, a person must drink the potion or swallow the pills in order to end life. 

Self-deliverance

By the way, for the purposes of this article, such an act will be called “self-deliverance” not suicide.  Self deliverance is the action of a terminally ill person who has virtually no chance of significant improvement and who wants to maintain control over his death.  I would call the death of someone like [well-known St. Louisan] I.E. Millstone self-deliverance, because at 102, but apparently not suffering from a terminal illness as we usually understand it, he jumped from the Daniel Boone Bridge over the Missouri River.  At 102, with various ailments and the loss of most family and friends, life is a terminal illness from which there will be no significant improvement. 

Physician-assisted death

Even the words “physician-assisted death” mean that a suffering person may obtain from a physician the prescription that will bring about death, if the person meets all of the requirements.  This kind of death, self administered, is currently legal in the states of Oregon, Washington, and Montana, with legislation pending in Vermont.  Only people who can get two physicians to certify that they are within six months of death are eligible.  This requirement  eliminates those who suffer from Alzheimer’s, advanced Multiple Sclerosis, advanced Parkinson’s, Huntington’s, and other horrendous neurological illnesses for which death is certain, but not necessarily within six months.

 Print media

Magazine articles and books, too, have raised our consciousness.  Dr. Atul Gawande’s piece, “Letting Go,” in the August 2, 2010 issue of The New Yorker has been widely read and quoted.  Additionally, Susan Jacoby recently published Never Say Die: The Myth and Marketing of the New Old Age.  She employs a quick intelligence and humor to make her main points.  Both of these authors urge Americans to be wiser and more informed about old age and end-of-life choices, in order to improve the quality of the time one has left.

 Courts

Finally, the trial of two Final Exit Network members in the last two weeks in Phoenix, Arizona, further illustrates the dilemma of those who wish to end their lives with dignity/control and of those who try to support them in these beliefs. The fact that elderly Final Exit volunteers would travel across the country, without any financial compensation, to be with someone who is determined to end her life is very touching to me.  Unfortunately they faced charges and a lengthy legal procedure as a result.  All four Final Exit members who testified during this trial were over 80. The trial was filmed by Frontline, which may or may not use the footage.

 The statistics of the Oregon Death with Dignity Act, the oldest in the United States, show that the rates of self-deliverance have not increased much with the passage of the law.  Many people get the prescription and feel greater peace of mind, knowing that they have “a way out,” but never fill it. And of those who do self-deliver, pain does not appear to be the major motivation. Rather, the loss of autonomy (91%), loss of ability to engage in activities that make life enjoyable (88%) and fear of loss of dignity (84 %), all are mentioned by patients in Oregon, who see pain or fear of pain (21%) as much less important. (statistics from an article in the May 1, 2011 edition of The Sydney Morning Herald)

 Happily, more of us are thinking about these issues and discussing them rationally, a sign of maturity and acceptance.

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The White Tiger, the novel by Aravind Adiga which won the Man Booker Prize in 2008, has been described as black comedy and a hilarious look at the insanities of life in modern India, but to this reviewer it is chilling as well, because it reveals a society in which the poorest classes have little hope of ever improving their lives. This is not a society that any of us would choose to live in, but sometimes we appear to be headed in that direction. If I had read The White Tiger when it came out in 2008, I might not have thought it had any parallels to our country or any political significance to us.  But now, unfortunately, I do.

The narrator and hero, Balram Halwai, begins the novel with a letter to the Premier of China, a man Balram expects to visit Bangalore within the week.  He has heard that the Premier wants to meet some Indian entrepreneurs and hear the story of their successes, so Balram writes:

Apparently, sir, you Chinese are far ahead of us in every respect, except that you don’t have entrepreneurs.  And our nation, though it has no drinking water, electricity, sewage system, public transportation, sense of hygiene, discipline, courtesy, or punctuality, does have entrepreneurs.  Thousands and thousand of them.  Especially in the field of technology. And these entrepreneurs – we entrepreneurs – have set up all of these outsourcing companies that virtually run America now.

Balram identifies himself as “half-baked” which means that he was never allowed to complete his schooling.  But he considers himself advantaged in the sense that while very well-educated people tend to take orders from others for the rest of their lives, “Entrepreneurs are made from half-baked clay.”

He loses his mother to sickness and death before he is eight years old, but is raised by a grasping grandmother and by a father whom he reveres as a man of honor and courage, in spite of his humble occupation as rickshaw-puller. Although his father chooses not to fight the system himself, he determines that his son will have an education.  Balram remembers his father’s words all of his life, “My whole life, I have been treated like a donkey.  All I want is that one son of mine – at least one – should live like a man.”  Although he does not understand exactly what his father means, Balram decides to be a white tiger – the creature who comes along only once in a generation, a person who takes advantage of every opportunity without exception. Sadly, within a few months Balram’s father succumbs to tuberculosis in a hospital in which there is no doctor to attend him.  The doctors are all attending wealthy patients.

Balram keeps his eyes open and learns the bitter truths about his society.  He misses no chance to move ahead in a very unfair world by watching everyone and seeing what they do, not what they say. He astutely observes the way the wealth in his district has been divided between four men, and he manages to be employed by one of them.  In moving ahead as quickly as possible, he has to leave behind his own beloved older brother.  After a visit home, he agonizes, “They were eating him (the brother who cares for the family) alive in there!  They would do the same thing to him that they did to Father – scoop him out from the inside and leave him weak and helpless, until he got tuberculosis and died on the floor of a government hospital, waiting for some doctor to see him, spitting blood on this wall and that!”  Sadly, Balram knows he must move on and not go back home.  Meanwhile he grows more cynical and ruthless, although the reader cannot help admiring him for his savvy humor and determination.  And he does have his standards, although he is willing to betray others in the servant class in order to get a better job, that of driving his boss in Delhi, a city where he has even more opportunities to learn hard lessons.  The book entertains the reader beautifully, in spite of its harshness, because Balram essentially sees truth is a totally unsentimental way and amusing way.  The reader slowly succumbs to the seduction of a lovable and funny fictional character, one capable of both empathy and murder.  At the end of the novel, Balram owns his own company with a fleet of cars and driver/employees whom he claims to treat with respect. True, he has made some ruthless decisions to get there.

So . . . Balram maneuvers in a class system that has a wealthy, powerful group of people and an underclass who sees little hope of bettering themselves; at least he is surviving and enjoying his success at the end of the novel.  However, none of us Americans envy the two tiered society in which he lives.  In fact, we fear such a way of life.  As the author Aravinda Adiga himself says in a Q and A at the end of the novel:

India is being flooded with “how to be an Internet businessman” kind of books, and they’re all dreadfully earnest and promise to turn you into Iacocca in a week.  This is the kind of book that my narrator mentions, mockingly – he knows that life is a bit harder than these books promise.  There are lots of self-made millionaires in India now, certainly, and lots of successful entrepreneurs.  But remember that over a billion people live here, and for the majority of them, who are denied decent health care, education, or employment, getting to the top would take doing something like what Balram has done.”

The White Tiger entertains, absolutely, but it is also a cautionary tale.

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People who work or volunteer in mental health services in the St. Louis area are plenty worried, with good reason.  Because of Missouri’s budget shortfalls and huge bureaucratic tangles, funds and services for citizens with mental illness have shrunk to crisis proportions.  This problem is hard to untangle because it involves the Missouri Department of Mental Health, numerous local hospitals and community health centers, providers both public and private, and – looming above all else – the closing of Metropolitan Psychiatric Center (MPC) for emergency room services and acute patient beds. MPC was our state supported adult psychiatric facility in the St. Louis area.  For those who are interested in reading about the closing of MPC, look at Jeannette Cooperman’s excellent article, “Losing It,” in the November, 2010 issue of St. Louis magazine.

The ugly reality

To take a simpler look at the current mental health dilemma without wading through dozens of acronyms, let’s see what happens to one individual with mental illness, not a real person, but a young man who is a composite of those affected, whom we will know as James.

James had the usual ups and downs in high school, but graduated successfully.   His freshman year of college was problematic, although he was still living at home and attending a community college.  At the start of his second year, he had to withdraw because of missed classes, failing grades, fears, irregular sleeping, and angry outbursts with family, friends, and classmates.  He voluntarily withdrew.  For the past year he has lived with his mother, who is increasingly worried and fearful about his future.  Now 20, he has no medical insurance and has lost several jobs. He spends most of his days sleeping, staying alone in his room, talking to unseen people and walking the streets when he cannot sleep.  His family suspects he is abusing alcohol and recreational drugs but is afraid to confront him about it because of his outbursts. When questioned about his substance use, he leaves home for days at a time.

Twice he has been taken to emergency rooms by police.  Admitted for a day or two, he has been given a small number of anti-psychotic pills, different drugs each time. Anti-psychotics can stabilize someone with psychosis, but they should only be used when a diagnosis is established and when the patient can be carefully monitored, particularly in the beginning.

His mother wants him to apply for Medicaid (in Missouri called HealthNet), but without some diagnosis of mental illness, he is not eligible. They have called Hopewell, the community mental health center in their area, but have been told that he cannot get intake without Medicaid. They have called the Helpline at the local office of the National Alliance on Mental Illness for advice, and been told that their son needs a psychiatric evaluation, a diagnosis, as a first step to getting treatment and possible services.  The community mental health centers (Hopewell, BJC Behavioral Health Care, Crider, and Comtrea) have been set up to offer services to those with mental illness living in their areas, but by order of the governor in December 2009, all incoming clients must have Medicaid.

Here’s the crunch for James and his family. He needs a psychiatric evaluation as a starting point for applying for Medicaid, but there is no agency that offers an evaluation to him at no cost, low cost, or sliding scale.  If his mother could afford to take him to a private psychiatrist for this evaluation, (roughly a $300-400 charge), and if he would cooperate, he could get a diagnosis.  At the moment, she is struggling just to make her rent and utility payments for herself and her three children.

Meanwhile, James is in limbo, and he is highly unlikely to get better without treatment.  If he becomes violent or threatening, his mother can call the police and have him involuntarily admitted, but that hospital, like the two previous institutions, is highly likely to discharge James in fewer than three days with a small amount of medication.

What’s missing

Before Metropolitan Psychiatric Center was closed to acute care patients, James could have been admitted through the Emergency Room and kept long enough to get a diagnosis, his medication stabilized, and some social services put in place.  Immediately upon his dismissal, the hospital would get him an appointment at one of the four community mental health centers, where he would regularly see a psychiatrist, get medication, counseling, case management and support for applying for Medicaid.  But those days, unhappily, are over.

Years ago, both St. Louis University and Washington University had psychiatric clinics that saw patients for psychiatric evaluations at a much lower cost than a private doctor.  But they stopped accepting outside patients several years ago.

If James lived in St. Louis county, which he does not, his family could call the Family Mental Health Collaborative, but none of those agencies currently has a psychiatrist on staff.  He is unlikely to profit from counseling until he is stabilized on medication.

James is young, intelligent and articulate, but mentally ill.  He is fortunate in having a home and a mother who has tried her best to get him treatment. With the right diagnosis, medication, and case management, James might very well be a productive member of the community.  But time is passing, and the untreated mental illness continues to do damage to his brain. His window of opportunity is not unlimited.  Every person who cannot get help, like James, is a tragedy for our community, both now and in the long years ahead.

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The hype surrounding the release of Jonathan Franzen’s latest novel, Freedom, dazzled book lovers everywhere, even if [conservative pundit] David Brooks was less than impressed.  The reviewer in the NYT Book Review section called it “a masterpiece of American fiction,”  Time magazine put Franzen on its cover, and Curtis Sittenfeld, writing for The Guardian, fittingly characterized the novel as “ . . . a long, juicy, scathing, funny and poignant indictment of contemporary American life.”  Masterpiece?  Maybe, but it is definitely a rollicking good read even at 560 pages.  It also covers most of the reasons we feel cranky about our lives today.

Walter Bergland, the husband of the couple whose lives form the basic narrative of the book, is a good man who has always taken care of the most important people in his life.  Of course this sets him up to be royally taken for granted and angry, but he does see life clearly most of the time.  In the middle of big discussion with his daughter, his old college roommate and his assistant, Walter speaks a profound idea.  He says:

It’s all circling around the same problem of personal liberties . . . People came to this country for either money or freedom.  If you don’t have money, you cling to your freedoms all the more angrily.  Even if smoking kills you, even if you can’t afford to feed your kids, even if your kids are getting shot down by maniacs with assault rifles.  You may be poor, but the one thing nobody cantake away from you is the freedom to fuck up your life whatever way you want to.  That’s what Bill Clinton figured out – that we can’t win elections by running against personal liberties.  Especially not against guns, actually. (361)

That speech startles because of its truth.  Americans love their freedoms more than anything, even though we’ve been told repeatedly that freedoms are not free.  It helps explain why so many supposedly sane Americans were determined last November to vote for candidates opposed to the health care reform bill, whose mandates include the provision that everyone must have health insurance.  Despite the economic and public policy reasons, many Americans came out fighting against the entire bill because of this one provision.  They don’t seem to realize that our health care costs are hugely larger in proportion to our gross domestic product than those of any other developed country, while at the same time our quality of health care is sadly mediocre. The only way to fix this inequity is for everyone to be insured.  But Americans, including many who are grateful for their Medicare coverage, resist fiercely the idea that the government should be involved in their health care.

Maybe this also explains why so many middle class Americans can enthusiastically support tax cuts that offer them nothing (no trickle down for us!) while they offer the rich greater money and power.  Why, when we have the freedom to vote for the things we need and deserve, such as decent health care, good schools, social safety nets for our most vulnerable citizens, real jobs, and an end to preemptive wars, do we vote against our own self-interests?  Maybe because we love our freedom to vote any way we damned please? Ouch!  It appears that Franzen may have read Thomas Frank’s astute book, What’s the Matter with Kansas? which appeared about six years ago.

In addition to circling the dilemmas and costs of personal and political freedom again and again, Franzen’s novel also encompasses population control, ornithology, mountaintop removal mining, corporations both at home and in Iraq, rebellious and neglected children, depression, family dysfunction, marital loneliness, enduring love, and the rock music scene, past and present.  We enjoy it because it covers just about everything that worries and upsets us, at the same time that it is remarkably funny and thoroughly authentic.

Most people who finish Freedom will not regret reading it, but it is certainly not a perfect book.  The character of Patty is especially problematic, since she personifies vitality in the beginning of the book, then seems to fade.  The sections that she supposedly writes as  autobiography at the suggestion of a therapist do not always sound like Patty’s voice.  In addition, there are some plot manipulations that don’t feel quite natural.  But these are small complaints outweighed by the pure pleasure of living with these delectable Franzen characters.  The reader will identify with some, feel compassion for almost all of them and will miss them terribly when the book is finished.

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