How Do We Talk About Quality of Life?

Ken Covinsky at GeriPal reminds us, by highlighting a new study, that a patient's diagnosis does not equal their quality of life. He writes:

Perhaps the most important issue is that if you want to know about a patient's quality of life, the best way to do so may be to just ask the patient to describe their quality of life. It seems that adding this single question to most clinical studies would be very informative. There is little reason for not supplementng the excellent health-related quality of life scales that have been developed with this informative global question.

The distinction between health status and quality of life was very nicely illustrated in a studypublished in the May issue of the Journal of the American Geriatrics Society. This study, led by Rachel Solomon and Terri Fried followed 185 elders with serious and progressive chronic illness. The patients had one of a number of conditions associated with chronically declining health---either cancer, CHF, or COPD. Patients were asked about their quality of life every 4 months. The findings are instructive:

• In the interview before death (usually in the last 4 months) 46% of patients rated their quality of life as either good or best possible.
• Between the pentultimate and final interview between dealth, 21% of patients reported improved quality of life and 39% reported no change. So, not only does quality of life not always decline as health worsens, sometimes it actually improves.
• Quality of life is strongly innfluenced by many nonmedical factors. For example, one of the strongest predictors of better quality of life was growing closer to one's church

To those of us who volunteer for hospice, we know that "quality of life" often includes far more areas of the patient's life than just their physical health. Finances, environment, food access, communication with family, friends, and medical staff, status of their estate will and possessions, spiritual comfort; all these issues and more can contribute to pain when they are outside the patient's control or expectations.

Cicely Saunders, the founder of the modern hospice program, called this idea of pain, something broader than just physical suffering, "total pain," as noted in an article on hospice history by David Clark:

There can be little doubt that when Cicely Saunders first used the term “total pain” in the early 1960s, she was in the process of bequeathing to medicine and health care a concept of enduring clinical and conceptual interest. In recent years we have gained a clear picture of the early evolution of the notion of total pain (Clark, 1999). Certainly, it emerged from Cicely Saunders’ unique experience as nurse, social worker, and physician—the remarkable multidisciplinary platform from which she launched the hospice movement. It also reflected her willingness to acknowledge the spiritual suffering of the patient and to see this in relation to physical problems. Crucially, total pain was tied to a sense of narrative and biography, emphasizing the importance of listening to the patient’s story and of understanding the experience of suffering in a multifaceted way. This was an approach that saw pain as a key to unlocking other problems and as something requiring multiple interventions for its resolution. Thus was formulated the idea of total pain as incorporating physical, psychological, social, emotional, and spiritual elements (Saunders, 1964).

The problem with the term "quality of life" is that it's become highly politicized in the past few decades, since medical advancements changed the definition of death with the new ability to sustain heart and lung function almost indefinitely. (William Colby has a great discussion of the term, it's many meanings and its importance in his 2006 book, Unplugged: Reclaiming Our Right to Die in America. See pages 126 - 139.) In the cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo, the "quality of life" of these individual women was contested by either medical staff or family members. Without the ability to communicate their medical decisions, these women were left to be "managed" by prevailing forces, in all three cases after a protracted legal battle. Because the standard, "I wouldn't want to live that way," is one that various non-terminal patients hear, particularly those with physical disabilities, the discussion of quality of life became muddied with conversations about patient autonomy, futile care, disability rights, and discrimination.

Religious leaders and "pro-life" groups have worked hard, often with the help of disability rights advocates (see the January 2010 special "assisted suicide" issue of Disability and Health Journal), to present the notion that quality of life is either unimportant when society considers treatment for the dying, or that we humans are unable to judge what only God can. In this way, pain management can then be acceptably addressed by some religious practitioners without moving into the politicized and evolving concept of "quality of life." There are endless theological justifications for refuting the will of a patient or their family when facing pain, including the concept of redemptive suffering (as espoused in Ethical and Religious Directive #61of the US Conference of Catholic Bishops, used to govern 624 hospitals in the US, which states, "Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.") God doesn't give us more than we can handle, therefor if we are in un-relievable pain, we can handle it. Suffering brings us closer to God by helping us to relate to Christ's suffering on the cross. It is through relation to Christ's pain that we most-often achieve salvation. To many of us, this can be a paradoxical concept; yet it undergirds the "mission" of the Catholic Church and "pro-life" activism against abortion, instruction in STD or AIDs prevention, fertility treatment for lesbian women, and removal from artificial nutrition and hydration at the end of life.

But Colby makes a strong case for continued public debate about "quality of life," one that focuses on the actual state of patients, medical procedures, patient informed consent, and various factors beyond but including physical pain. He writes:

The problem with avoiding the topic of quality of life is this: the main issue in the Schiavo case was Terri Schiavo's quality of life. Though not usually cast that way, that's what the whole debate of the case was about. More specifically, the issue is whether a medical intervention can restore function, relieve suffering, and provide sufficient quality of life so that the patient (or person speaking on her behalf) chooses to accept that medical treatment. Indeed...quality of life is what the serious public debate should be about.

Various attempts have been made to define "quality of life" in a meaningful and functional way, namely by presidents' councils on medical ethics. Yet the controversy -- that is the mediated public debate, often devoid of practical considerations -- on quality of life, particularly in such cases as the 30,000 persistent vegetative state patients who are in the US at any given time or surrounding issues of assisted suicide and organ donation, will most likely continue until society's understanding of medical capabilities, futile care, law, and the dying process catch up. I'm hopeful that the advancing assisted suicide movement, the glut of Baby Boomers soon to enter the end of life phase, advocacy for patient autonomy and rights, and our crumbling and inadequate medical system will all contribute to greater public knowledge and discussion of quality of life.

Schindler Condemns Activist Judges and Killer Courts at Notre Dame.

Bobby Schindler, brother of Terri Schiavo and co-founder with his parents and sibling of the Terri Schindler Schiavo Foundation, spoke at Notre Dame today. Since his sister's death Schindler has become a full-time speaker against "euthanasia." Today's talk was titled, "Schiavo: Activist Courts and Judicial Murder." From North Country Gazette:

Bobby has been a passionate and outspoken pro-life advocate, specifically in opposition to the euthanasia movement, activist judges and pro-death lawyers and doctors. He believes that laws that set the groundwork for his sister’s death were motivated by the expense of caring for the disabled and elderly. Bobby is also a staunch supporter of the pro-life movement’s battle to end abortion.

I'm not certain why the courts would be financially swayed regarding their decisions on assisted suicide. Perhaps I can ask him?

I will be attending the Pennsylvania Pro-Life Federation's event in Scranton on Saturday, October 24th should you wish to join me. It is titled, "Lighting the Way for Life in the Electric City." Schindler, along with Phill Kline, former AG of Kansas, Emily Chase, "abstinence expert," and Dr. David Prentice, a stem cell research expert with the Family Research Council will be speaking. Let me know if you're going and we can carpool.

via the ever-dramatic and fact-stretching LifeSiteNews

Work it Terri Schiavo!

With this week's death of Robert Schindler, the father of Terri Schiavo, all the martyrdom scenarios have been pulled out without stop. I've seen accounts of his early death because of Terri's "murder," there's a little brouhaha regarding the autopsy report in one of Schindler's obituaries, and now this from the ever-melodramatic and shameless Steven Ertelt at LifeNews:

"...Terri's death was an opportunity God put in our laps."

Later he calls her "little lady." Like a small dog looking for a treat or like a lady of the night? Or is this "in our laps" just another poorly used cliche? This premise that God makes us suffer, made Schiavo suffer, so that others may live is very important to the martyrdom scenario used by the Schindlers, LifeNews, and other "pro-life" organizations.

Perhaps her death was just her death, like the deaths we will all face someday? Not in the business of raising funds. Do your job now, Terri. You've got some shill to earn so that others may save us from our own choices and autonomy.

I'll print the letter in its entirity because I find it so blatant and manipulative. (Comments) are mine:

Dear LifeNews.com Readers,

It is with tremendous sadness that we reported this weekend on the passing of Robert Schindler, the father of Terri Schiavo. From those who have experienced it, it is always a horrendous ordeal to outlive your children, but even worse when your daughter's life is taken away from you and your family by someone whose motivations are entirely different. (I'm not certain what "different" means here. In the Schiavo martyrdom scenario, Michael, Terri's husband, has become the Judas character, the betraying husband.)

At the same time as we mourned the sadness of losing Terri to a tremendously painful starvation and euthanasia death, we pro-life people recognized -- perhaps none moreso than Bob Schindler and the rest of his family -- that Terri's death was an opportunity God put in our laps. (There is no proof that starvation and dehydration are painful. Doctors have concluded that the severe damange to Schiavo's brain most likely prevented her from experiencing any sensations whatsoever. But suffering too is necessary to the martyrdom scenario. Suffering is redemptive.)

With the starting of the Terri Schindler Schiavo Foundation, Bob and his family sounded the alarm about how Terri's abhorrent treatment was but the tip of the iceberg. So many disabled, elderly and other people who need medical care and treatment are having it deprived them from doctors, hospitals, the government and even the ones they love. (Note that the family included Schiavo's maiden name in the Foundation name. "...Are having it deprived of them," is pure fear-factor stuff. Euthanasia is illegal in the US. The only orgs denying treatment routinely are insurance companies. But beware of those you love! They're gonna get you.)

Sadly, the situation is getting worse before it gets better. The plight of Terri Schiavo has been followed by more states and more nations legalizing assisted suicide. The health care bills in Congress push a quality of life ethic that tells patients the amount and type of medical care they should receive is based upon some arbitrary government standard and that some lives are not as worth living as others. (Untrue. This is an echo of the rationing scenario conservatives have been erroneously touting. I am very curious about the "quality of life ethic" phrase. Pro-aid in dying patients often talk about the importance of quality of life, about their unwillingness to suffer.)

In HR 3200, doctors are given financial incentives to potentially push a reduced level of medical care or to suggest that grandma and grandpa may be better off to withdraw food and water or sign a DNR order prematurely. (Untrue. Patients would be covered should they wish to consult with their doctors about end of life care. "Reduced level of medical care" implies neglect, erroneously.)

Worse, in states like Oregon and Washington, our own government, in this government-run health care plan, would pay for physicians to suggest that patients consider the option of assisted suicide. (Untrue. Doctors may not mention assisted suicide in the three states where it is legal unless the patient has asked about it. And even after a number of strict criteria are met, the patient must self-administer the medication. The doctor nor anyone else is permitted to administer the drugs.)

Our veterans, who have given so much for the freedom and liberties we enjoy every day, are seeing their own government send them materials telling them they may need to consider whether they are a burden on others. Here the heroes of America, who bore the burdens so many of us have never had to bear, are told they should consider sacrificing their own lives after they already sacrificed so much. (Untrue. VA patients are covered by their insurance should they decided to talk to their doctor about end of life planning. Let me be clear: end of life planning is NOT assisted suicide nor euthanasia, which are illegal in the US. Beware when social conservatives claim to protect freedom and liberty!)

In such a short time since Bob Schindler and Mary and Bobby and Suzanne faced the nightmare of losing their daughter and sister to an estranged husband with his own agenda, the euthanasia movement is more forcefully pushing its agenda on us. (Again, Michael is the "estranged" when in actuality, he was the care-taker of Schiavo until her death. They interpret his "own agenda" as a desire to continue his life after Schiavo's death. Can't blame him, can you? It's a narrative that fits in well with the victimization of Schiavo. And again, as with abortion, no one is forcing an agenda on those who don't believe in choice. All citizens are given the right to follow their faith, but not to impose it via legislation on others.)

Will we push back? Will we fight against these notions that our bravest and most cherished people should get out of the way so we don't have to bear their burdens? The Bible calls on people to bear each others burdens. The Schindler family did just for so many people that after Terri died. Now, it is our turn. When it comes to the Schindlers, will you take time to pray for them as they mourn and grieve the loss of a loving father and husband? When it comes to the disabled, the elderly, the sick and those who need a little extra help, will you support them? Please consider reading the LifeNews.com story about Robert and send a check to the Terri Schindler Schiavo Foundation to encourage their work to protect other Terris. (Work it, Terri. For the heros.)

And if you have a little extra, please consider supporting LifeNews.com. We will always cover pro-life issues on abortion, but we will never tire of joining our friends in the Schindler family by lighting a candle with them to shine a light on the plight of medically vulnerable people. (I'm not certain of what "medically vulnerable" means but it sounds scary.)

LifeNews.com will continue joining the Schindlers in taking the lead to highlight the growing culture of death that pushes euthanasia and assisted suicide. We will continue to keep you informed about what you can do to protect your family, yourself and others. We will battle back when that slippery slope gets slicker and the sanctity of human life is devalued further. On behalf of LifeNews.com, we thank the Schindler family. (Culture of Death, protect your family, sanctity of human life, slippery slope - these are the bread-and-butter phrases of "pro-life groups; hyperbolic, fear-inducing narratives that have nothing to do with the actual world.)

We know Bob and Terri are enjoying a warm embrace in Heaven. And we know they are looking down on us and asking every pro-life person to do just a little more to let the world know that life should be cherished, from the little baby before birth to the little lady near death. (More infantilization of Schiavo, more of that after-death warmth that ascribes desires and motivations to the deceased - particularly those shared by the writer.)

I hope you'll join us in keeping up that fight. Enjoy the story about Bob Schindler and please consider a donation to help them and help us. Steven Ertelt, EditorLifeNews.com

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