Prognosis is not a term familiar to most people unless used by a doctor to explain the expected course of a medical condition. Even then, the word or its implications may not be understood. At times of a medical crisis all we want to hear is that the outcome is going to be good. However, explanations about poor prognosis may often be spoken in code or heard in incomplete sentences.
The issues surrounding prognosis remind me of Pete from our 2003 video “Voices From The Lived World Of Illness” He talks about being diagnosed with advanced lung cancer but remains hopeful while still feeling a bit of skepticism about his future. He goes on to say that his doctor posed a question about life expectancy rather than initiating a direct discussion about prognosis. Pete recounts the interaction.
“After talking with him [oncologist]—not that he has a crystal ball but he has more knowledge about cancer and possible longevity than I do—he asked me what I thought about 10 years. I said I’d be delighted. It really changed my outlook. There have times since then that I thought 10 years may be optimistic but maybe I can do it. ”
No doubt, it’s uncomfortable for doctors to talk candidly about life expectancy. And, of course, these predictions are not an exact science. It’s also hard for patients and loved ones to hear that time may be limited. Under these circumstances there can be an avoidance of honest communication for both doctors and patients, which can lead to a “collusion of silence.”
Talking in code may be a more gentle way of introducing a poor prognosis but should we leave the patient trying to interpret what it means?
In my most recent blog What Do You Want From Your Doctor, I shared a response to this question by a patient who participated in the Writing is Good Medicine® program I facilitated at Southwestern Vermont Regional Cancer Center. Despite being seriously ill she expressed “remaining hopeful of possibilities” and wished the doctor would honor her hopefulness in planning care.
While re-reading this blog it triggered memories of another patient who faced similar circumstances. In this instance, in my role as medical humanist, I asked the patient “What are you looking for from your doctor?” While the chemotherapy dripped into her vein I wrote what she said.
“I am looking for a medical companion that would say we can do this. This is a really bad disease but you’re young—you’re healthy and link arms with my husband and me. There’s lots of stuff out there we don’t know about and see what we can do.”
“This sounds like the words from my own mouth,” she said.
“They are and your doctor will read them.”
I believe that it’s incumbent upon those facing serious illness, whether we like it or not, to open timely and honest conversations with doctors about hopes and expectations. As a result, there can truly be a shared responsibility in planning care.
In previous blogs I described my role as a medical humanist at Southwestern Vermont Regional Cancer Center (2002-2005) where I documented the patient’s understanding of their diagnosis, prognosis, treatment plan and the impact of their illness on themselves and family. My note was read by the cancer care team and helped facilitate doctor –patient communication about what may have been misunderstood or unspoken during the medical encounter.
During my tenure I also offered patients (individually or group) an opportunity to write about their inner most thoughts and feelings. The exercises chosen for the Writing is Good Medicine® program served as prompts for personal reflection and could be shared with loved ones and the cancer care team. On one occasion I posed the question, “What Do You Want Your Doctor to Know About You?”
One patient wrote.“I want to know all the things that will help me broaden my concepts of possibilities!
I want you to know—I know that I am seriously ill. Sometimes it feels as if I am more vibrantly alive, that at any other time in my life...
I want you to know that I trust your good judgment and I value your knowledge, experience and creative intellect as I value my own breath and heartbeat and all of you...
I want you to know that I fully realize that you are willing to see and hear all of me and that makes a difference; fueling my desire to dedicate my abilities and energy to the task of co-operating in the process of getting well...
I want you to know that in spite of my diagnosis...you have helped me to continue to live...to reclaim more of my life.
I want you to know that when I speak and write I hear my own voice...that when what I say is true to my spirit I feel in touch with myself and more real...I know I am still here...I have not been disempowered by my illness.”
As I re-read this writing exercise it reminded me of many patients who described their treatment experience as physically and emotionally debilitating while at the same time remaining hopeful of possibilities. It was important for this patient to let the doctor know how his “good judgment” was helping “reclaim more of her life.” In spite of increasing demands on time, I still believe doctors need to hear more of these stories from the lived world of illness to help guide a plan aimed at true patient-centered care.
Always interested in receiving feedback about the "Difficult Conversations Toolkit", a patient asked me if I would read what she had written. “I am unsure,” she said, “of how I have structured it.”
“I’d be pleased to read what you have written,” I said.
As I often do, I looked up the definition of the word structure, which in and of itself refers to “an arrangement of parts and elements that are something complex.”
Her feedback arrived in an e-mail titled STRUCTURE OF THE ESSAY, with the following content.
...You need to know the facts of my life
...You need to know the losses of my life
...You need to know my body
...You need to know my heart
...You need to sustain my hope
A conversation with a friend revealed the assumptions I make: typing in each one of my needs I thought about the assumptions I/a patient makes about their doctors and nurses. Do they know, what I am thinking? There are so many levels to my thoughts and feelings about illness and treatment. Do I need permission to talk about the issues?
--reading each section and experiencing ones ability to make clear the issues prompted me to identify and explore my own position –a lot to handle all at once—deal with one section at a time.
--need to use prompts to help patient open up.
--watch out for those who compare rather than identify
This may be an unusual commentary for feedback. Yet, it strikes me that when offering patients a structure [Toolkit] to explore the experience of illness they usually respond by describing intimate thoughts and feelings. I discovered that initiating use of the Toolkit often comes down to a gentle nudge. Can it be that simple?
"Learn the art of fragmented, irrational conversations and follow
the patient’s lead instead of trying to control the dialogue."
Zen and the Art of Coping With Alzheimer’s
In the days when there were video stores I would walk by the film “Iris” countless times, knowing it was a story of the writer Iris Murdoch and her husband’s experience with her cognitive decline due to Alzheimer’s disease. I would often find myself pausing, which would prompt memories of conversations with my father who at 86 years old was diagnosed with late onset Alzheimer’s.
It was after his passing that I was asked by the Vermont Veteran’s Home to serve on a panel to address issues that families face when a loved one has a mentally debilitating disease. I thought it would be impactful to show some clips from the film, a story in which a critic stated, “Iris celebrates her life, even as Alzheimer’s robs her of it’s meaning.”
In preparing for the program I selected a few film clips from “Iris.” I found myself viewing them as both a daughter and a medical humanist.
As a daughter it was the scene when Iris’ husband was reading to her that brought me back in time to when my father had lost his ability to speak. My Dad was a man in search of meaning—he turned to philosophers, poets, theologians and artists. I turned to his bible, a book titled
The Prophet by Kahil Gibran and I would read and re-read this passage to him.
“...a scholar said, Speak of Talking
And he answered saying:
You talk when you cease to be at peace with your thoughts;
And when you no longer dwell in solitude of your heart
you live in your lips, and sound is a diversion and pastime.
And in much of your talking, thinking is half murdered.
There are those among you who seek the talkative through fear of being alone.
The silence of aloneness reveals in their eyes their naked selves and they would escape.
And there of those who talk, and without
knowledge or forethought reveals a truth
which they themselves don’t understand.
And there are those who have the truth
within them, but they tell it not with words.
Let the voice within your voice speak to the ear of his ear...”
In the film Iris has moments of lucid verbal expression at a doctor’s visit and proclaims, “Without words there are no thoughts...”
It was when the doctor points to the MRI of Iris’s brain, her husband cries out: “You have shown me a map of Iris’s brain world. You say it is empty, that all the unknown mysteries of life are gone now...but how can she say things with such lucidly...where in the empty jungle does that come from?
“We don’t know,” the doctor, answers.
“No, you don’t know!” her husband replies.
As family and friends of those living with Alzheimer’s we should consider the mysteries that lie beneath the silence and make an effort to communicate as we’ve known them. It may or may not jog some memory or lead to a meaningful verbal exchange but our engagement acknowledges the person within. I tried to do this as a daughter and believe that the medical humanist side of me would likely approve.
“Few patients realize how deeply they can affect their doctors,” notes Dr. Scott Haig. In his Time Magazine article (10/5/2007) he goes on to say, “That is a big secret in medicine, which doctors hate to admit. We think about, talk about and dream about our patients. We went into clinical medicine because we like dealing on a personal, even intimate level with people who have chosen to put their bodies in our hands. Our patients make or break our days.”
“Take the compliment,” Dr. Haig tells us. “Our career choice means we really do think that you—with your aches and pains—are more interesting than trading securities, more fun than a courtroom full of lawyers.”
This revelation brings to mind the words of Laura Byrne from our Difficult Conversations video. She lets us know that “Doctors have a hard job. Not everyone wants to have these [difficult] conversations...some people do.” She is referring to a discussion about her prognosis. As patients, do we stop to think what it’s like to deliver bad news or not have answers?
Dr. Haig’s article highlights the doctor’s experience, which is a balancing act. On one hand doctors must be objective clinicians but they are also touched by their patients’ anguish over living with uncertainty. And, as Laura Byrne implies, doctors are not mind readers and can find themselves in a dilemma as to how much information a patient would like. In such instances, they are imagining themselves in the patient’s skin. To imagine is not to know.
The doctor-patient relationship is very complicated and prone to misunderstandings. It seems to me that best care takes each “helping” one another on this journey. The only way you can do that is with open and honest communication.
So, what can patients do to help their doctors? Dr. Haig offers one suggestion, “Massaging the ego is the key to manipulating responsible types like doctors. When we feel your trust you have us.” I have often advised patients to say, “I need your help.” I do not agree with Dr. Haig that such a message is manipulation but a reminder as to why they went into medicine. These words can humanize the medical encounter.
I recently stumbled upon a writing exercise completed by a patient who participated in the “Writing is Good Medicine”TM, program, which I created to help patients put words to their experience of living with illness. Participants were encouraged to share their writing with family and healthcare providers in order to open communication about issues and concerns. For one exercise I posed the question, “What do you expect from your doctors?”
A patient, who I will refer to as Diane, wrote, “Some patients seem to have unrealistic expectations but a real need to know that someone cares about them and their problems. In a way they may be asking their doctor to create the illusion that he or she cares. Although this concept has an element of comic relief, the effort and time a doctor spends listening to a patient and creating a sense that the patient has been adequately cared for develops a win-win situation for both doctor and patient. Especially, if the patient believes that he or she has been cared for and the doctor feels fulfilled in that the patient has been helped. The initial thought of creating an illusion becomes an actual act of caring.”
Diane’s words made me think about basic elements for building a meaningful doctor-patient relationship. She seems to be implying that the act of listening can create an illusion of caring, which may be enough for her. Yet, Diane’s view overlooks aspects of a doctor-patient relationship that may be important to others. Of course, satisfaction or disappointment with care would depend on your expectations. Is the act of listening enough? If not, what do you expect from your doctor?
In the early 2000’s the Center for Communication in Medicine created a program for physicians at Southwestern Vermont Medical Center titled “Doctors Conversation Hour.” Before each meeting I would send participants an article to help prompt discussions about ethical and personal issues in practicing medicine. On one occasion, however, I selected a poem, “Not God” by Marc J. Straus, MD. The doctors were presented the option of writing a response to the poem.
One doctor (whom I refer to as Dr. Smith) wrote about what he would say to a patient. He began, “There are some questions only God can answer. We doctors can only do our best to help you with what we know, and to support you and stay by you no matter what happens. If we cannot cure you we’ll do whatever we can to meet your goals—whatever they may be… Together we will do our best to navigate through tough times together. When we see each other as allies in dealing with disease we can tolerate all kinds of uncertainty, change of condition and fear.”
Smith confessed, “It’s hard for me (doctor) to say ‘I don’t know, because I want to have the answers for questions...I love to ‘fix things,’ I want to bring the right resources to you. But I commit to always telling you exactly what I know—the truth—it’s the only way we will both get through this.”
In the next breath he recognized the limits of his medical knowledge and lack of training in addressing existential concerns, which prompted him to ask, “Whom else would you want to talk with? Do you have a spiritual or religious person you’d like to bring to your bedside? What would be most assuring to you? What else would assist you in dealing with this question?”
Not surprisingly, these questions led to an in depth group discussion about unrealistic expectations placed on doctors to “fix” everything. Of course, we hope that our doctors can successfully treat our ailments but we as patients must also try to summon up our internal strength and external sources of support.
Let me interject a bit of a twist here. During my tenure as a medical humanist at the hospital’s cancer center I had spoken with patients who did not view doctors as God nor did they believe in one. They placed their faith in medical science.
Every patient has their own expectation of what his or her doctor can or cannot do for them. That said, it seems to me open and honest communication is the key to humanizing doctor-patient relationships, thereby leaving divine intervention in the hands of someone else.
“The most important questions, don’t have ready answers,
but the questions themselves have a healing power
once they are shared.”
Rachel Naomi Remen, MD
Kitchen Table Wisdom
UNCERTAINTY IS THE REFUGE OF HOPE
The Journal Intime
Henri Frederic Amiel
Recently, I was reminded of a patient from time passed who had asked me, “How does one live with uncertainty?”
In
The Wounded Story Teller writer and patient Arthur Frank notes, “When a doctor tells us we are sick they are not just diagnosing us—they are initiating a new chapter in the story of our lives. What would it be like for patients to tell their stories and doctors to read them?”
As a medical humanist, who is also a writer, the function of my role was to help facilitate doctor- patient communication by documenting the patient’s perspective of illness--in their own words-- for the doctors to review.
I suggested a writing exercise. “Your opening line is ‘how do I live with uncertainty?’”
The patient took pen to hand.
“I started to write about uncertainty when the dark sky outside my bedroom window brightened with a flash of lightning and a lower rumble of thunder could be heard...at a distance...a safe distance...I wanted to enjoy the passing of the storm...It seemed alive to me not threatening...so I opened the curtains and set down with my pen and paper... with the lights out I watched the flash of light...heard the role of thunder and enjoyed the slow ballet of silhouetted branches as they danced in the wind...the presence of uncertainty in my life...prompts me to say “yes” to the call...to use each moment wisely...to make good choices...to say “yes” to life...the dark side is a fear that I will squander my opportunities today because I made a pleasing choice...one that fit my heart and I feel better about the alternatives.”
As a writer I was impressed by such a poetic description of uncertainty. What was her doctor’s response?
I stood at the doctor’s desk as she focused her attention on the page. There was a pause and a sigh before she told me how these words could be helpful in opening a conversation about what she now understood to be the importance of maintaining clarity of mind in considering treatment options.
“As doctors,” she confessed, “We tend to use medical language as an objective cloak—keeping us one step removed from our patients. By raising our awareness about what patients hear and are saying you can help me communicate with greater empathy—and in so doing, gain a deeper insight into my experience as a physician.”
Sadly, I’m hearing talk about how increasing demands and time pressures are leaving physicians feeling disconnected from patients. Perhaps, by patients telling stories of how illness is impacting their lives we can help our doctors connect to the human side of medicine, which was their calling in the first place.
In Man’s Search for Meaning Victor Frankl said, “The quest for meaning is central to the human condition, and we are brought in touch with a sense of meaning when we reflect on that which we have created, loved, believed in or left as a legacy.”
On August 30 the Center for Communication in Medicine (CCM) presented another in the series of SpeakSooner community education programs titled Re-defining Quality of Life: Living Fully with Illness, Disability and Aging at Equinox Village in Manchester, VT. The program explored the complicated issues surrounding quality of life concerns when facing the effects of illness, disabilities and aging.
As best as I can I’d like to bring you into the room—introduce you to CCM’s community work and to those who generously shared their experiences both personally and professionally, for which we are grateful.
CCM founder Dr. Bernard Bandman began the program by identifying factors that can influence quality of life such as physical health, psychological well being, independence, family support, financial security, spiritual beliefs and support services. He then presented a video clip from CCM’s “Voices From The Lived World of Illness,” in which several cancer patients talked about quality of life adjustments. He then introduced the panel.
The panel included: Pat Musick, an artist diagnosed with macular degeneration; her husband Jerry Carr, a former astronaut who has become his wife’s studio assistant; Dr. Allen Hutcheson, a palliative care physician; Sarah Sigsbury, home health care nurse; and myself, a medical humanist.
Dr. Bandman moderated the panel discussion.
Dr. Bandman began by asking Pat, “Tell us about your health condition and how it has influenced your quality of life. What have you done to adjust?”
Pat was quick to say, “in a word, its communication!” She talked about telling her husband that she needed his help more than ever in fulfilling her artistic visions, especially large sculptures. Pat emphasized the importance of being honest with family. She needed her children, grandchildren and great grandchildren to understand that her eyesight was failing and would need their help. And, she offered an example by saying there would be a time when she may not be able to recognize them. And, it would be helpful if they told her who they are. For her part, Pat asked doctors and investigated resources to learn about what aides were available to enhance her sight.
With an affectionate smile towards his wife, Jerry talked about liking his role as her studio assistant, noting he’s an engineer and can help build large structures. He also talked about preparing for visits with doctors by writing down their list of questions. In fact, he had a pen and pad in hand taking notes throughout the discussion. When asked about a tip for those in the role of caregiver, Jerry emphasized the importance of “listening so you can understand their definition of quality of life.”
Dr. Allen Hutcheson noted the importance of educating patients and families about the role of palliative care and its mission to improve quality of life for all patients. He addressed the mistaken belief that palliative care is only available for end of life care. Dr. Hutcheson described himself as someone who asks many questions, perhaps too many. He’s found that he can get on the nerves of some patients. That got a laugh.
Sarah Sigsbury, a nurse who visits those who are home bound, underscored the need to “listen to what the patient wants—not what healthcare providers think they should want.” She gave an example of a woman who’s definition of quality of life included cleaning her home, which she accomplished by rigging an extension to her mop handle. This task made her feel worthwhile.
As for my remarks—I summarized much of what the panel said. I noted, “Only we can define the meaning of quality of life. But sometimes we need some guidance and encouragement.” Dr. Bandman added, “The Difficult Conversations Toolkit was designed to help patients and caregivers think about issues and concerns that can influence healthcare decisions and quality of life considerations.”
There were numerous questions at the Q&A about quality of life concerns and challenges of navigating the healthcare system. Nobody seemed in a hurry to leave. I think this says something about an interest in this subject, especially when facing issues with illness, disability and aging.
