"On Healing" November 2001

Posted on 11/19/2001
Dying well: Comfort, community, control, and closure
By Dan Gottlieb

Several months ago I decided to write a column about what it means to die well - to die with dignity and comfort, surrounded by loved ones. I thought I would interview an expert or two and explore some of the issues: how you find a doctor who supports palliative care, how you'd get help in instructing your family about how to care for you, how you can begin to think about your own death.

That was before I noticed the blisters on my knee.

First it was a small blister on my right knee. Then a larger one on my left. Then another. About a month later, I developed one on my finger. The blisters were getting larger and I was getting anxious. In my search for a diagnosis, I heard a doctor wonder aloud about a disease called pemphigus. He drew blood and told me to return in two weeks. I vaguely remember him telling me not to worry. I worried anyway, and within the hour I was on the Internet reviewing pemphigus. The first paragraph said it is a potentially serious autoimmune disease. And, in its most severe form, if untreated, life expectancy would be two to five years. I went on to discover that there are several types of pemphigus, some of which are fairly benign. But my mind took me to the worst-case scenario.

Initially, I felt numbness around my head and was unable to catch my breath. After several moments of near panic, a strange calm replaced my anxiety. I've always believed that one day a doctor would tell me my life was ending, and that it would happen before I was ready. So I wasn't terribly surprised, just very sad. I felt I was losing this life I so cherish.

For the first several days, everything made me cry. When I heard beautiful music, saw the vibrant color of the autumn leaves or a picture of my grandson, I wept. I had actually begun to mourn my own death. As part of the process, I reviewed my life and felt comfortable with what I had accomplished and my small contribution to the world. Most of all, I was proud of my children and had faith that they, too, would contribute.

Over the next several days, I did more research into this disease and spoke with many of my doctor friends. By the time I saw the dermatologist again, I was confident that I had a benign form. I was right.

Nevertheless, I contacted Terri Maxwell, executive director of the Center for Palliative Care at Thomas Jefferson University, and asked what a "good death" would mean if I'd had a malignant form of the disease. That, she responded, would depend: "For some people, a good death might mean fighting right up until the very end and dying in a hospital or intensive-care unit. Others may place more value on relationships and try to stay at home surrounded by their family and comforts. So, I think, it would be really important for me to find out what's important to you and what your style is."

Of course, I've never died before, so how could I know my style? But Maxwell said how we die reflects how we live. She pointed out how quickly I had researched this disease, suggesting that I am more comfortable with information. Others don't want to know all the facts because they may be too frightened, in denial or both.

Despite the variation from person to person, Maxwell cited four factors that have come out of research about dying well:

Comfort. "This is probably the single most important factor for patients and families to feel it was a good death. People need both physical comfort and emotional support. After all, spiritual and emotional pain requires spiritual and emotional solutions. But medical pain requires medicine."

Community. "Everyone needs a sense of belonging, especially in the final stages. As people are dying, they need to be in the presence of people they love. This helps the transition for everyone."

Control. "The vast majority of patients and families need information so that they can make decisions about their daily lives. Often we find that doctors are hesitant to be candid because they fear taking away hope from the family."

Closure. "Many of these issues around closure are very practical. Some people want to plan their own funerals or name someone to make decisions for them if they're not able to make them themselves. There is a good deal of evidence that people want to have some sense of what the timing of death is going to be and what it might be like. This information is also important to families because they must make very practical decisions about work, travel, and how to plan their lives. Many patients and families want to understand what they are seeing and what to expect. Hospice does a wonderful job in these areas. Sometimes information makes the process less scary."

Over the years, I have worked with many people who were terminally ill. Almost all, when they gave up the battle, looked more peaceful. I asked Maxwell if a good death meant giving up hope. "We need hope throughout our lives," she said. "But hope changes over time. So that hope for finding a cure can change to hope that one will leave a legacy and be remembered. But no matter what stage a person is in, it is never too late to mend relationships, express both affection and regret, and get in touch with one's spirituality."

People who are at peace with their relationships tend to have an easier time with the final stage of life. And finding peace is the cornerstone of a good life - and a good death.

As readers of the Health & Science section may have noticed, today's column is on a theme that is being explored more broadly in a 15-part series of articles called "Finding Our Way: Living with Dying in America." My radio shows today and next Monday also tackle these critical issues. (My apologies to listeners who tuned in last Monday; the show was postponed for breaking news coverage of the plane crash in New York.)

Today's pre-recorded edition of Voices in the Family will examine the end of life and all its challenges, examine the need for ritual, and talk about spirituality from a variety of perspectives. Studs Terkel, who at age 89 has a new book out on the issue, is among my guests, as is a funeral director who is also a poet, an expert on ritual, and an anthropologist who has studied pet funerals.

On next Monday's more traditional call-in show, we'll talk with Terri Maxwell and with palliative-care expert Ira Byock, who wrote one of the articles in the series.

Posted on 11/05/2001
It's hard to see 'golden child' bully as a teen in distress
By Dan Gottlieb

In a recent column, I described some of the psychology of bullies and recommended an approach that included reaction to the behavior and compassion for the bully. I suggested that some "zero tolerance" policies were themselves an act of bullying and that schools needed to teach tolerance. The column brought many letters, most of them critical. Here is one:

Dear Dr. Gottlieb: There is a class of bullies you do not discuss. These are the alpha males in school, often the jocks who in a sense run the school social life, to the detriment of those they despise - the geeks, burnouts, and those who don't meet their "standards." As a teacher with 10 years' experience, I can tell you that, if anything, this is more common than the "depressed, insecure, and lonely" bully. Where I taught, the jocks were the chosen ones, as were the cheerleaders. They could do almost as they pleased, and enjoyed making those "beneath" them suffer.

At some schools, these students actually require a type of slave service from the non-jocks. I have read articles that suggest the average bully has greater self-esteem, believes that the rules do not apply to him, and that it is his right to dominate others. How many of us have also seen the golden boys and girls, who think nothing of casually humiliating those outside their social strata? This often takes on classic bullying characteristics . . . constant taunting - often about the victim's sexual persuasion.

We have to move beyond pitying the bully as a poor soul with low self-esteem. Those parents from the upper middle classes, and those with star athletes for children, need to be especially careful that these advantages don't translate into a right to degrade those their children consider inferior. Parents, educators and counselors need to wake up and smell the coffee.
- A teacher

Dear teacher: You must be terribly frustrated by people such as me. You are surrounded by this despicable behavior, and some bleeding-heart, mental-health type makes some pronouncements about "poor bullies." Well, you are right. This behavior is disgusting and done by children who are either overprivileged or overvalued. As a matter of fact, I remember being beaten pretty badly in high school by the star of the football team when I tried to stand up to him for making anti-Semitic comments.

If I were in your position, I would probably be feeling pretty angry and aggressive rather than compassionate and understanding. Nevertheless, I stand by my original position: People who bully are in emotional distress. Depression and anxiety take many forms. Depressed people are not necessarily sad; anxious people are not always nervous; and insecure people are not always withdrawn. Usually when people "act out" they are having feelings they cannot tolerate. Those you describe may well be powerful, beautiful, athletic or wealthy, but are they happy or content?

I am familiar with the research that shows these children have high self-esteem. But I believe what the researchers measured is not self-esteem at all. It is narcissism.

I certainly agree with all those readers who have said bullying behavior must be dealt with quickly and aggressively. Several called bullies a type of terrorists and said their behavior is inhumane and cannot and should not be tolerated. I agree with that, too. But if we treat these children as aggressively as they have treated the children they harm, what's the message? Sure, in that moment we are stronger than they are. But as we all know, power can quickly shift with deadly consequences. Unless we show some caring for these troubled children, we are solving today's problems at the cost of tomorrow.

I have worked with some of these "stars" who have spent a lifetime being valued for looks or performance. None of them felt genuinely cared about or understood as people. None were able to explore their emotions. And when they began the process of looking inside, they lacked language to describe what they felt.

Many of the children you describe are being raised by adults who have their own insecurities and "need" a star in order to feel their own value. Some are so fixated on their children's beauty that when they get into trouble, the parents blame others. That leaves the children with little choice: The only way they can be loyal to their parents is to continue bullying. These kids are generally lonely, alienated and not aware of their own pain. That is why they are able to harm other children - because if they are unaware of their own pain, they are certainly unaware of the deeper, emotional pain they inflict on others. The prognosis for some of these children is quite poor; when they face their first real adversity, they will be in trouble. Nevertheless, many can be helped.

So what can be done? If the behavior is so intolerable that the bullies need to be temporarily removed from school, that's fine. But don't just let them go home for a brief vacation. These are people who know nothing about compassion - for themselves or others. So while they are on suspension, send them to a children's hospital to care for young people who are battling to survive, or to a rehabilitation center with kids who live with terrible disabilities, or to a homeless shelter, or a hospice. Have them spend time with people who, unlike themselves, suffer on the outside. If they share time and space with people who may be vulnerable and alienated but are fighting for their lives, their dignity or their independence, it will enable many of the bullies to access their innate sense of caring for others.

If these children can access their compassion, that would pave the way for the beginning of genuine self-esteem. And people who feel good about themselves don't hurt people.

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