Thursday, May 26, 2011


Living in pain is easy; dying with dignity is hard

By Edward Copeland
In 1994, Oregon became the first state to allow doctors to prescribe lethal doses of medication to the terminally ill so they wouldn't have to endure all sorts of crippling pain and the assorted loss of functions and powers that turned lives into something that could hardly be called living anymore. Tonight, HBO premieres the great documentary How to Die in Oregon, which personalizes the law, telling the stories of several Oregonians who weigh the option of whether or not to end their suffering. It's a powerful, emotional film that hits particularly close to home for me. It's also something everyone should see, especially in a time when compassion and rationality on a wide variety of issues seem to be in short supply.

Sometimes it's difficult when reviewing a movie — narrative or documentary — such as How to Die in Oregon that you know will deal with issues that are important to you. It makes critical distance harder to have. On the other hand, if you feel the film (or play or TV show for that matter) botches the presentation, you're liable to be harsher than you would be otherwise. Thankfully, that's not the case with How to Die in Oregon.

The documentary opens with a home movie of Roger Sagner, who became the 343rd person to have his suffering ended legally after the passage of Oregon's law. As his lethal dose of Seconal gets mixed for him, his volunteer from Compassion and Choices, the advocacy group that helps most people with their final act, asks him the two questions that they are required to: "Do you know you have the right to change your mind? and "What will this (drink) do to you?"

Sagner answers very quickly, "It will kill me and make me happy." He then gives his last words, first of love to his gathered family members, and then his final statement:
"I thank the wisdom of the voters of the state of the Oregon for allowing me the honor of doing myself in on my own volition to solve my own problems."

What I wouldn't give if the wisdom of Oregon voters could somehow be bottled and slipped into the entire country's water supply, since we have a short supply of rational-thinking adults. Oregon also legalized medical marijuana, which has shown great progress in easing the pain for people such as myself who have multiple sclerosis, but then again 15 other states and the District of Columbia have joined Oregon on that law. Unfortunately, I'm stuck in a state which has a governor and legislature doing its damnedest to drag us back to the 19th century, prior to its and which on the last General Election ballot had as a priority a state question making sure that no state judge used Sharia law in making rulings.

When Oregon voters approved its Death With Dignity law, only the countries of Switzerland and the Netherlands had legalized the practice. Since then, forward-thinking voters in Washington state and Montana also have approved such laws. Worldwide, Luxembourg is the only country to legalize it since. Worldwide, debates go on everywhere, but they always run into the same opposition, usually from churches and the religious, who most of all should watch How to Die in Oregon and maybe they'd understand this is about compassion — and isn't compassion a basic tenet of most religions?

The film was directed, produced and photographed by Peter D. Richardson and won the Grand Jury Prize for Documentaries at this year's Sundance Film Festival. I don't know its competition, but How to Die in Oregon definitely proves award-worthy. Richardson establishes an amazingly intimate rapport with the film's interview subjects. His main focus stays with a 54-year-old woman named Cody Curtis who successfully beats liver cancer once only to have it return stronger and with a six-month death sentence attached, making Curtis face the idea of taking the lethal dose when the cancer returns.

Given an expiration date and knowing what kind of pain she faces, Cody decides that she won't let cancer and doctors control what remains of her life and she sets a date to take the lethal dose, which gives her an unexpected sort of freedom, even though her entire family isn't happy about it, especially her son Thomas, who asks his mom if she won't struggle for herself, can't she struggle a little for him?

Thomas moves past that, but that's what prevents laws such as Oregon's from being the law everywhere — friends and family, partly out of love but out of selfishness as well — can't bring themselves to accept the idea of their parent or child or whomever choosing to die, even when they witness the amount of pain that person goes through for long periods of time and know deep inside that it only get worse and that person's life will not end well under any scenario.

Before we meet Cody, the film introduces us to Sue Potter, a seven-year volunteer for Compassion and Choices and one of the group's most active. We see her make one of her first stops to a man lying in be, obviously having a particularly bad day. Potter explains to him that she's there to talk with him because he's contacted the group about ending his life.

"End my life? I'm already in life," he tells her. "I've already ended life. I want to exit life."

Potter explains what it's like for people who get to these conditions. "These people have lost so much control and they'll tell us repeatedly that they want the medicine for control."

The actual process requires filling out a form with the extremely long title REQUEST FOR MEDICINE TO END MY LIFE IN A HUMANE AND DIGNIFIED MATTER. It requires the signatures of two witnesses attesting that the person seeking the lethal dose is of sound mind.

As Cody Curtis says at one point in the documentary about having the lethal prescription in her house, should she need it:
"It's very comforting to know they're here. I don't have to go through any more bureaucracy.…They're here when I decide.…It's not like when I'm in the hospital and they tell you, 'You have to have another CAT Scan' or 'We're taking you down for another procedure.' It's my choice when to take them and whether to take them. My volunteer has told me I'll know and I'll just have to trust her on that. I'll know when my life isn't worth living anymore."

While the film keeps Curtis as its center, it has plenty of time for sidetrips to other dying people, interview subjects such as Derek Humphry, author of the once controversial book Final Exit, as well as Seattle's Nancy Niedzielski who leads the campaign for a similar law in Washington.

Niedzielski's story really illustrates the need for such laws. Her husband Randy was diagnosed with brain cancer. Nothing doctors could give him would alleviate the pain and the condition got so bad sometimes his eyes would literally pop out of their sockets. Randy finally decided to end treatment, since none of it was going to save his life or ease his pain. He went to a hospice and asked if they could help him do what they could to end his life quickly, but the hospice workers said they couldn't because that was illegal in the state of Washington. Randy told them that he would move to Oregon so he could take advantage of the Death With Dignity law, only he was told that he was so weak and near death by then that he wouldn't survive long enough to establish Oregon residency, a requirement of the law. His last request was that his wife change Washington's law and she helped lead the campaign for two years until its passage in 2008.

You get to see the usual opposition as when Nancy serves on a phone bank and gets an opponent of the law's passage and actually challenges the caller on what so many people don't seem to understand on any issue: They are free to think it's wrong, but why do they think their belief should be imposed on everyone else? Why is the idea of choice (and I'm not using it in terms of the abortion debate here) so revolting to them? You also see Nancy interviewed for a radio program where the host calls what she is seeking "assisted suicide," a term which offends Nancy and most others who support Death With Dignity. Nancy tells him that suicide is when someone who is otherwise healthy and would live for many more years decides to end his or her life because he or she is clinically depressed. Unfortunately, in the 47 states that don't have this law, that's how they treat people who are in chronic pain: as if they are just depressed and need shrinks and medication, like a teenage boy whose girlfriend just dumped him.

It also has something to do with what you hear in passing in a segment that plays excepts of the Washington debate on talk radio where a man talks about having to be placed in long-term care and how it's eating up his inheritance. Not that I ever had a fortune in savings, but I've watched it evaporate thanks to my medical costs. It doesn't help that my sole income is Social Security Disability Insurance and for two years running, Social Security recipients have been denied cost-of-living increases under the argument that the rate of inflation hasn't been high enough to justify it. Of course, this hasn't prevented Congress from giving themselves cost-of-living hikes to their six-figure salaries both of those years.

Then there is Medicare. Part A the "hospital part" is free, but if I wanted Part B, I would have to pay a premium which would be deducted from my meager Social Security check. On top of that, one of my doctors won't take Medicare patients and others are threatening not to because of talk that their fees might be reduced. Therefore, I didn't take Part B, staying on the health insurance that was funded by my employer who still considers me an employee on long-term disability, even though I receive no salary. The government tries to blackmail you into taking Part B, telling you that for each year you don't sign up, the premium will increase a certain percentage for every year you didn't. As for the increasing number of doctors who refuse Medicare patients, Lawrence O'Donnell pointed out last week that in 1960, before Medicare, the average family doctor's salary was $10,000. Just four years after Medicare's enactment, that average had increased to $24,000. Today, that avearage is something around $130,000 a year. For specialists, it's about $333,000 a year. And these poor babies fear cuts. By the way, Part A, the "hospital part" only covers you if you are admitted to a hospital. If you have outpatient procedures at a hospital or are taken to an emergency room at a hospital, that doesn't count. That's Part B.

The entire health care industry, with the government as co-conspirators, opposes laws such as Death With Dignity because they want to bleed everyone dry first. The system for people who are chronically ill but not terminal actually is set up so that you really can't get financial help unless you are broke first. That's what they want: It's how the system is set up. Pardon my digression. I'm writing this to praise a wonderful documentary on an important topic.

Oregon isn't immune from this either. How to Die in Oregon also tells the infuriating story of Randy Stroup, a 53-year-old uninsured man diagnosed with prostate cancer who had to depend on the Oregon Health Plan. After his first treatment, his doctor recommended stronger chemotherapy and the health plan sent him a letter denying the treatment, but giving him a list of other options, including the Death With Dignity Act. This was a man who wasn't terminal and could be saved.

"To think they'd put a price tag on my life," Stroup said, "by saying they'd pay to kill me but they wouldn't pay to help me." Sounds very reminiscent of when Arizona recently cut their program for people awaiting transplants. One way or the other, it all comes down to money in the end.

The center of How to Die in Oregon and much of its power belongs to Cody Curtis' story. After setting a date to take the medication, she find a happiness and freedom. Instead of everything revolving around her impending death, it becomes about life again and she ends up not taking it on the date she set and actually living beyond the six months she was told and with few signs of the pain she feared. It's as if she's been given a gift and gets more time with her husband and children, but eventually the cancer does kick in with its pain and complications. As she had said before after her brush with the disease, it's a relief to know the medication already is there in her house when she needs it and it's up to her to choose when that time is. Director Richardson's choice in filming the conclusion of Cody's story proves both perfect for the documentary and for Cody as well.

From beginning to end, Richardson's compelling documentary takes you on an emotional roller coaster. It would have been easy to turn How to Die in Oregon into a propaganda piece supporting Death With Dignity laws, but he just lets his subjects talk and the audience has the experience. No embellishment is necessary.

How to Die in Oregon premieres on HBO tonight at 8 p.m. Eastern/Pacific and 7 p.m. Central. Truly, it should not be missed.

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I wasn't able to see this tonight - but I will, soon, and I hope a lot of other people do as well. Anyone who claims to be a humanist should first consider what's in the best interest of individual, and by extension the community, as opposed to whatever rationale best serves the precious, antiquated system of values they cling to out of fear, ignorance, or just plain stubbornness. Looking beyond one's own prejudices - whether it's in regard to end of life choices, or any other hot button issue - is difficult in that it requires not only questioning, but empathy and self-examination. Would that more people had the willingness to do that.
This is a thoughtful and compassionate article about a movie of which could be said the same. That's why I'm surprised that you trivialize depression with this line: "as if they are just depressed and need shrinks and medication, like a teenage boy whose girlfriend just dumped him."

I would think, or hope, that someone who takes a cause such as Death With Dignity so seriously would show the same respect to depression. I'm not suggesting that people who suffer from depression should have an option such as Death with Dignity, but it can be just as crippling (both physically and emotionally) as any terminal disease.
It wasn't my intent to trivialize depression but to show that that is how other states deal with people with terminal illness and chronic pain: As if their problem is merely depression and can be treated the same way as someone who is clinically depressed is. In other states, if someone is in crippling pain or terminal and expresses to the wrong person a desire to die, they are reported as being suicidal and treated as such, often taken by force to mental facilities because states, specifically ones in The Bible Belt, think counseling and antidepressants will help someone feel so much better about dying or being in excruciating pain. As the woman who led the campaign in Seattle explains, Death With Dignity is not assisted suicide but that's how the majority of states and people view it. That was what I was trying to say: They do the trivializing. I wasn't trivializing depression, which can be crippling but also occurs in people who could be otherwise healthy and live for years. They don't have cancer cells eating them alive or ALS destroying their motor skills or they're not bedridden for life and dependent on other for everything. Regular depression doesn't kill people unless that person chooses to let it. People who seek Death With Dignity are going to die no matter what, they just want the option of choosing less pain and less loss of control.
I was actually there at Sundance when Richardson won the award. The whole audience cheered for him, then we watched the movie, then we all cheered again. I don't know if it was my absolute favorite documentary at Sundance (that would be Marshall Curry's If A Tree Falls, which just got picked up by PBS), but this came pretty damn close.

Actually though, the hardest thing for me was trying to think of a question to ask Richardson during the Q & A. I remember saying to him something like, "I just want to start by saying that what I love most about this movie is that it honors these people. It doesn't portray them as cowards. It portrays them as brave people who have fought as hard as they can against their diseases, and it honors their right to choose."

Then I said something like, "But, if you don't mind, I'm going to play Devil's Advocate for a minute--because it occured to me, while watching, that this film is probably going to be attacked by politically-oriented critics, from either side of the spectrum, who might charge that this movie exploits these people, or that it takes advantage of the decision they are in. If people start saying things like this, how would you respond?"

Richardson then told me that he was aware going in to make the movie that he knew it might open wounds. The basic point he addressed to me, though, is that he hopes that Cody's story will offer a feeling of comfort for any Americans watching the film who are experiencing her same situation. Then he concluded, "So, I hope that answers your question."

It most certainly did.
Anyone who can watch this documentary and not feel any compassion for those who were suffering, especially after hearing Cody's and Nancy's stories, has no heart. With Cody, I saw her beat the odds of her original diagnosis making me glad that she didn't have to end her life. But when the cancer came back and I saw her suffering so much, I just wanted to hold her and tell her to just take the Seconal. I commend the Curtis family on their bravery in sharing their experience with us especially for letting Richardson show the final day when they could have just let Richardson use an intertitle.

What got me with Nancy's story was when she said that Election Day was the end of her marriage since she was fulfilling her husband's dying wish. The fact that her husband was thinking about others that were suffering like him in his final moments makes the people who are supposed to care about people's health and well-being and ignore their wishes to end their suffering look like heartless machines.

I hope that people will watch this documentary and understand that people have the right to live the lives that they want even if they no longer want to suffer to live it.
Good post, good documentary, but I must take umbrage with part of your title..."Living in Pain is Easy". I have had chronic pain from Lupus, Fibromyalgia, Chronic Myofascial Syndrome and many other diseases and conditions for many years, and were in not for my son and husband I would probably choose to kill myself.

And I one of the lucky ones, as I have a doctor willing to manage my pain with narcotics. There are many people suffering every day b/c they cannot get a doctor who will prescribe pain relief due to the fear that all of us in chronic pain will become drug addicts, or that they will be liable.

This is a very real problem in America, and I think deserves just as much attention as the right to die; the right to live with your pain under as much control as possible with some semblance of a quality of life.

There's a documentary for you.
I agree with you. Living with pain is not easy. I suffer with it every day. The title is just a play on the old phrase "Dying is easy; comedy is hard" It's not meant to be taken literally other than in most states, they would rather you live in pain than give you other options.
Also I agree. I have a very high tolerance so, unfortunately, eventually any pain killers they give me stop working after I've been on them awhile and doctors are too skittish about turning people into addicts. Since I'm someone who is bedridden, why not do it? It's not like I can get behind the wheel of a vehicle? My problem is that I have one of the rarer forms of M.S., primary progressive, so I'm not like others who have periods of remission where things get better. I may plateau for a while but my symptoms only go one direction: downhill. There's no scenario where my life ends well since my money is running out fast and I'm dependent on my aging parents who have health problems of their own. If it were feasible to get to a state such as Oregon, I would. I'd just like to be able to try medical marijuana because recent studies have shown it has great success in alleviating the pain in M.S. patients. Because my M.S is the rarer form, there really isn't any treatment for it and none really does study or trials to find treatments for it because since there are fewers of us with it, there's no profit in it for the drug companies. Money is the root of all medicine.
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