Being diagnosed with a serious illness is akin to being a stranger in a strange world.
"Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don't know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home," says former Madison resident Jessie Gruman, president of the Center for the Advancement of Health, and independent, nonpartisan institute in Washington.
That excerpt from Gruman's upcoming book, "AfterShock" (To be published by Walker Publishing Co. Inc. early in 2007) shows her own frustration assiciated with shocking diagnoses. Advance praise for her book comes from the medical community, including members of Harvard Medical School and the University of Pennsylvania School of Nursing, as well as media stars such as TomBrokaw and CNN anchor Judy Woodruff.
She wrote the book to help others become better health-care consumers, touching on topics such as how to find the right doctors and hospitals and how to get acquainted with your disease.
"I want people to know how to take care of themselves and pay attention to the urgency of their situation even when their heart is broken," Gruman says.
Gruman's shock and eventual insight to navigating the health-care maze comes from not one, but four traumatic diagnoses.
At 20 years old, when Gruman was a student at Vassar College, she learned she had Hodgkin's disease; at 30, she had cervical cancer; at 40, pericarditis, a dangerous heart condition; and three years ago, when she turned 50, she learned she had colon cancer.
Gruman, who lived in Madison when her father was pastor at the First Congregational United Church of Christ from 1965 to 1975, says even though she is well-connected to the health-care community, she never felt more alone, confused or scared than during the first couple of weeks after receiving a diagnosis of a life-threatening illness.
"It's a dark, toxic time," she says. "You need to make really good choices, but it's a time when you don't feel able to make good choices or find the right information."
There are so many questions to consider from the outset. Gruman says, that perhaps the No. 1 step is to deal squarely with the seriousness of your situation.
"Treat it like a crisis, don't pass it off. Then decide who to tell and when," she says.
She also has some thoughts about dealing with personal relationships. "People are very vulnerable when they're going through a health-care crisis. If you say you'd like to do something for someone, be specific, like you'll come by and walk their dog or take out the trash. Be specific and then be willing to deliver."
Recognize, too, that people in crisis may not want to talk on the phone. "E-mail is a life-saver," says Gruman. "Tell people you want to hear from them, but that you may not be calling them back. It helps reassure them that you recognize their concern."
Kate Ford Roberts, a clinical nurse specialist at UW Hospital and Clinics' Palliative Care Program, says the fear of the unknown is nearly intolerable for many patients. When someone is first diagnosed with a serious illness, Roberts says they're understandably thinking of dying.
"Recently, a friend of mine was diagnosed with breast cancer," she says. "She talked about her worries, about the fact that she is too young to die and leave a 10-year-old child without a mother."
What can you say to that? Roberts says, "Listen to the fears they're expressing without giving them false assurances like saying things like No you're not going to die.' "
Over the years, many people have told her that they're not afraid of dying, but they're afraid of what they might need to go through first.
"Learning more about their illness and treatments that allow them to die free of pain, can be helpful," she says. "Knowledge in a time of crisis can be golden."
Roberts says friends and family members can help patients deal with a devastating diagnosis in several ways.
"They want people to remain themselves as much as possible. They want you to do less talking and more listening. They don't expect you to know how they feel. In fact, many people hate that all too familiar question, How are you?'"
Whatever you say to someone who is seriously ill depends on your relationship with them, Roberts says. "Give yourself permission to not get it right.' If you're really sad to learn of their illness, say you're really sad. Just be yourself."
She also suggests helping people focus on life-giving activities. "Help the person create more memories by asking questions like: What are you hoping for? What are your goals? What do you want to finish? These are the types of questions that open doors to understanding their feelings."
Patient care matters ,Dr. Bill Rock, internist and a medical director at HospiceCare, says one of the first questions he asks patients is how much they know about their illness.
To the inexperienced, that may seem simplistic but, Rock says, "There's a phenomena called amnesia of loss' that can affect people who are going through a crisis." Rock frequently sees people who have received a devastating diagnosis within the previous couple of days, but have no recollection of being told about their serious illness.
"The phenomena is similar to denial," he says. "It's the brain's refusal to acknowledge a terrible situation. But unlike denial, amnesia of loss is temporary."
That's why Rock says it's important that an objective person be in the room with patients when they are learning about their illness and their options.
"Realistically, physicians don't want to talk with a patient's family members because they don't want to take the time. But taking time with patients is what we need to get better at doing."
Taking a social history
In the world of medicine, Rock is an anomaly of sorts. His life's mission, he says, is to improve the focus on patient care. "Too often our medical culture talks about curing the patient, but tragically, we ignore caring for the patient and the family."
Rock adds, "The very act of sitting down with a patient and talking to him affirms a patient's life." Physicians should spend quality time with them by asking about their occupations, their hobbies and their pets, about where they went to school, their teachers, their travels, their hopes and dreams. This is the type of care that Rock says patients deserve, particularly when they are diagnosed with a life-threatening disease.
He also tells patients to keep striving for something. "It might be a big milestone like seeing their child graduate or a grandchild born, but small things that they look forward to from day to day matter a great deal, too. There's soft evidence that if you can maintain hopefulness, it can extend your life."
Radio peer groups
Another bridge for people coping with a traumatic diagnosis is Carol Koby, host of the Saturday morning radio program "All About Living" on WTUX-AM 1550.
While the show focuses on many issues, some programs generate more interest than others. "When a guest talks about his or her devastating health diagnosis, it always precipitates more listener phone calls than any of the other shows -- even though their illness may be different from the illness the guest is talking about."
The reason, Koby says, is people want to share their stories. "Talking to others on air is like a peer group of sorts. Many callers say it helps them deal with their diagnosis."
Koby's empathy comes from first-hand understanding.
Her former husband, David Severson, who died of cancer at HospiceCare in 2001, had also been ill with dementia for several years. "David was at HospiceCare for 31 days, so I practically lived there during his final weeks," she says.
In 2005, Koby married Denis Carey, a retired Madison dentist who had lost his wife to breast cancer. "We shared a bond of experience," Koby says.
"Don't ignore people when they're going through a crisis even if you don't know what to say," Koby advises. "What helped me was when friends came by HospiceCare and just sat with me and said I'm here for you.'"
What else can friends do to help?
"Bring soup," Koby suggests. "Even with a devastating diagnosis, life continues. Soup is not only comforting and hearty, it's life-affirming. It eases the pain."
\ Contact Sharyn Alden through firstname.lastname@example.org.