In the fields of neuroscience, few diagnoses are easy for patients and families to absorb. Whether the diagnosis is achieved gradually, after many tests, or whether it arrives like a bolt out of the blue, as with a stroke or seizure, lives are usually altered forever.
“I think as a neurologist 90 percent of time we’re talking to patients about a difficult diagnosis,” says Patricia Colapietro, MD, a neurologist at UC Health. “Almost always we are talking about diseases that have no cure, or that have limited or no treatment, or that can recur in an attack, or that can be terminal.”
The result is that patients, families and clinicians at the University of Cincinnati Neuroscience Institute travel an intimate and challenging path together, from the moment when a new reality emerges through periods of acceptance and denial, hope and fear, and, finally, resolution and healing. Individual paths vary according to the suddenness of the diagnosis, the severity of the disease, and the personality of the patient. But some events appear immutable: delivering a difficult diagnosis is an art for the physician; absorbing the diagnosis and moving forward is a deeply personal rite of passage for the patient and his or her family.
Delivering the news with normalcy
At the UC Neuroscience Institute, a partnership of the UC College of Medicine and UC Health, specialists do their best to deliver a neurological or psychiatric diagnosis in a manner that best serves the needs of patient and family. When Dr. Colapietro acquires the results of a test or brain scan, she schedules an appointment with the family as soon as possible. She wants to deliver the news in person, and she wants to discuss the thought process and tests that led up to it. When she delivers the result, she wants to be sitting down, meeting the patient or family eye to eye. She wants this doctor’s visit, in spite of its potency, to proceed like all the previous visits. She wants to restate why she ordered the tests. She wants to show evidence – brain scans, blood work, or a positive lumbar puncture – and to explain what the evidence means.
Following a cardiac arrest that has caused severe brain damage in a patient, John Quinlan, MD, often finds himself delivering sorrowful news to a group of family members. Honesty, kindness, plain language, sufficient time, and a private setting are important to him.
“If the family is dealing with a tough diagnosis, you want to make sure you have the right amount of time and a good setting where you can discuss the situation,” says Dr. Quinlan, a neurologist and Medical Director of the UC Neuromuscular Center. “If you find you’re in a bad setting, you try to find a better one. When I’m communicating I try to do it very slowly, beginning with a topic sentence. If there has been brain damage, I say, ‘This looks to me like it’s a bad situation.’ I try to let them know that I wish I had better news. It’s really important not to move too fast. When you say, ‘I think we have a bad situation here,’ the person will need 10 seconds just to let that register. Then you can move on to a more clear description of what you think has happened. It may take the patient’s family member a half a minute or more to let that sink in. And then I move slowly and give them a chance to ask questions. If they don’t ask the next question, they have absorbed all they can handle at that time.”
Dr. Colapietro, following the advice of a mentor, Dawn Kleindorfer, MD, a neurologist and Co-Director of the UC Comprehensive Stroke Center, follows her heart when delivering bad news. “You can’t be afraid to show vulnerability,” she says. “If you have to cry, you will cry. If the family asks you to pray, and it doesn’t go against your beliefs, then you pray with the family. If the family asks a question you don’t know how to answer, I tell them I don’t know. It’s OK to be honest and true during such a difficult time when we have the privilege of being in such an intimate relationship with our patient. We should not be afraid of being ourselves. We should be afraid of being superficial.”
There is no right or wrong response to bad news. Doctors say they can never gauge how a patient or family will react. Individual responses, clinicians say, will reflect how people lead their lives and how they cope with stress. Some will remain calm, while others – perhaps most — will break down.
Phases of grief: are they really true?
When we think of the “phases of grief,” we are often referring to the Kübler-Ross model, a series of emotional stages expressed by the Swiss psychiatrist Elisabeth Kübler-Ross in her book, On Death and Dying. She defined the stages as denial, anger, bargaining, depression and acceptance.
Scott Ries, MSW, LISW, Associate Professor of Psychiatry and Administrative Director of the UC Mood Disorders Center, notes that although the stages play out in that order for many people, research has not found them to be strictly true. “The stages aren’t the result of a study of thousands of patients,” he says. “Nevertheless, the initial stage of denial is often present. And you will see stages of anger and bargaining, but not necessarily in clear stages. Sometimes you see anger and bargaining in the same stage. And sometimes you see acceptance and a return to anger or denial.”
Dr. Colapietro says she prepares herself to deal with patients and families who may be in any one of the phases of grief. “When you give someone a diagnosis, there is loss,” Dr. Colapietro says. “Your life won’t be exactly the same, and there will be a grief process associated with that. Someone might go through denial, or be angry at you, or try to bargain.”
Dr. Colapietro says that patients are “bargaining” after a difficult diagnosis “when they try to do some doctor shopping.” They may ask to see other providers – sometimes within the same practice — or they look for miraculous treatments on the Internet. “They’re bargaining for an alternative diagnosis or a treatment that we have not established to be the best one,” she says.
Dr. Quinlan says he has had patients who are in denial three years after their diagnosis. At the other end of the spectrum are those who move from diagnosis to acceptance almost immediately.
“The reality is a lot of people never experience denial,” Mr. Ries says. “They are used to looking at the world as it is. They’re the ones who say, if a tornado is coming, ‘Head to the basement!’ They don’t say, ‘Naw, it won’t hit us.’ They say, ‘It might. Let’s be prepared.’”
Some will want to charge ahead with treatment. “Sometimes people get a brain tumor diagnosis and, after the initial shock, they say, let’s get down to fixing this,” Mr. Ries says. “For them, the diagnosis is a challenge. They have confidence in their ability to deal with challenges.”
Some, faced with a terminal illness, will weigh the odds and decline treatment. Dr. Quinlan recalls a case from his residency involving a young man and his father, who were from Alaska. The father had just been diagnosed with a malignant glioma. “We went over the options — radiation, and what there was to gain from that,” Dr. Quinlan recalls. “Overnight, they made the decision not to undergo any radiation treatment but to go back to their cabin in Alaska because it was a beautiful season. They came to terms with it quite quickly. The father said, ‘We’re going to pack our fishing gear, get a case of Jack Daniels and reserve the float plane.’ ”
Closure for some, no closure for others
For some patients, a diagnosis brings closure after months of uncertainty. A patient who receives a diagnosis of multiple sclerosis may look back and remember a past episode, periods of illness or other specific abnormalities, says Dr. Colapietro, who sees patients at the Waddell Center for Multiple Sclerosis. “So although this is a difficult diagnosis to receive, sometimes there is some kind of closure, some kind of answer that was found.”
Perhaps a more difficult scenario at the Waddell Center is an absence of diagnosis, especially when a patient has been feeling sick. “From my standpoint this is also a very difficult conversation to have, because the workup was done and we cannot produce an established diagnosis,” Dr. Colapietro says. “This happens with other conditions, too. But with multiple sclerosis, because there are so many non-specific symptoms, we see this fairly frequently. These patients are looking for answers, and unfortunately, at that point in time, we do not have the answer for them.”
Follow-up visits and a chance to ask questions
As patients and families absorb a difficult diagnosis, Dr. Quinlan wants them to ask questions whenever they are ready. He advises patients that they eventually will have questions, and he wants them to call back. “Sometimes when there is a tough diagnosis, like ALS, we will schedule another visit in a week, and tell them to bring anyone they wish with them.”
Dr. Colapietro knows that many of her patients will go home and start searching the Web for more answers. She tells them she will remain available even after the visit. When she refers patients to a sub-specialist who can better manage their future care, she assures them that she is still available should they need her.
Letting go of who we no longer are
Mr. Ries frequently helps patients come to terms with diagnoses that range from treatable to inevitably fatal. He works with patients from several of the UC Neuroscience Institute’s centers, including the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders, the Waddell Center for MS and the Neuromuscular Center.
“We have a world inside our head – the world of the ‘shoulds,’” Mr. Ries says. “It’s the world that says this is who I am and this is what I can count on and what I’m entitled to. And then there is the world we actually live in. When you get a diagnosis, there is a real conflict between the world you think you live in and the world you have now become a part of.”
Mr. Ries remembered a couple he counseled several years ago. “They had run a store together, raised a family and had worked their whole lives. Now, with the kids raised, they were able to retire and enjoy life. But shortly after they sold the store and were making their retirement plans, she was diagnosed with relatively aggressive ALS. So in addition to the normal grief and pain of knowing what that illness is like and what the outcome always is in ALS, he faced a struggle, in his mind, of accepting that the life they had planned together was not going to happen as planned.”
The experience, Mr. Ries says, is similar to that of a person who is laid off or fired from a job. The individual is a working person one day, supporting himself and maybe a family, and the next day he is an unemployed person, someone he has never known.
“The ability to accept reality is much easier said than done, when the world in inside your head and outside are so far apart,” Mr. Ries says. “The world inside your head says, ‘I should be healthy, I should be this, I should be that,’ when the world outside says, ‘This is what I’ve got and I need to adapt.’ That’s where the conflict comes in: You don’t think of yourself as the person with bipolar disorder, or schizophrenia or a brain tumor. You’re not that person; so how is it possible that you suddenly are?”
Finding the optimal place through realism
Ultimately, patients and families should strive for realism, Mr. Ries says. “Realists know that life is a difficult journey filled with a lot of joy and happiness,” he says. “To live a life of perpetual joy and happiness and comfort isn’t realistic. Sometimes we take vacations and it rains the whole time. That’s life. That’s the ability to see the world we actually live in and accept it as it is.”
There is a school of thought that the ideal frame of mind is balanced somewhere between optimism and pessimism, Mr. Ries continues. “Jim Stockdale, who ran for vice president under Ross Perot, was a POW for several years. In the book Good to Great he talks about the idea that you could tell who was going to do well in a POW camp. The pessimists assumed they were going to die, while the optimists assumed that being freed was just around the corner. But if you are going to be stuck there for seven years, release is not just around the corner. The realists – those who said at some point I’ll probably get out of here, but it’s probably not going to be soon – were the ones who did the best.”
A special place for hope
Somewhere in the realm of realism there is a place for hope. Rekha Chaudhary, MD, a neuro-oncologist with the UC Brain Tumor Center, is unfailingly kind and honest with her patients. But her honesty is always laced with hope.
“If the diagnosis is a glioblastoma, a malignant form of brain cancer, and if the patient wants a prognosis, I explain that there is only a 3 percent chance of 5-year survival, but there’s a valedictorian in every class,” she says. “I tell them, you may not know a lottery winner. But I know a lot of valedictorians. It is not so rare.
“This is why Walk Ahead for a Brain Tumor Cure is so hopeful,” Dr. Chaudhary adds. “It is filled with patients, and they are running the 5k three to four years after their diagnosis.”
“If someone is struggling and not accepting a diagnosis,” Dr. Quinlan says, “I am reminded of a great teacher who said, ‘It’s not your job to take away hope.’ Sometimes if you are looking at a patient and they are clinging to something, your job is to be honest; but it is not your job to take away hope.”
“Patients have to have hope,” Dr. Chaudhary says. “If you don’t have hope, every cancer diagnosis is devastating. I don’t care if it’s a 90 percent cure rate or 90 percent terminal. If there is a 90 percent cure rate, that 10 percent is always in the back of your mind. Personally, I don’t care what the diagnosis is. I always tell my patients, ‘You have to plan for the worst and hope for the best. We all should.’”
— Cindy Starr