Truth-telling and hope: Not mutually exclusive at end of life
Honest prognosis can introduce new options, sustain hope
"At what price is cure a goal? And what price does hope carry?" Lindsay E. Rockwell, MD, a Northampton, MA oncologist, wrote in a 2007 JAMA article.1
Larry Cripe, MD, an oncologist who teaches hematology/oncology at Indiana University School of Medicine, says truth-telling and the encouragement of hope in cancer patients is a subject that requires careful analysis to determine exactly what the hope and truth are aimed to accomplish.
If by "hope" the only meaning is "cure," then anything short of aggressive chemotherapy right up to the point of death can be seen as surrender.
"In a 1997 Institute of Medicine report on the care of dying,2 the authors conclude that a lot of suffering at the end of life is due to the failure of the physician to disclose hospice and unrealistic expectations [of the patient or family]," says Cripe. "I assume that's basically a valid summary."
The failure of care providers to push for dialogue about hospice and care for patients as they die often lies in the conflict between what is viewed as compassionate and what is viewed as the truth. Often, clinicians, family, and patients fear frank discussion of hospice and death — aggressive therapy in favor of comfort care — will destroy hope.
But hope can have many guises, just as healing does not always mean curing, points out J. Vincent Guss, Jr., MDiv, chaplain, Falcons Landing Air Force Retired Officers Community in Potomac Falls, VA.
"It's a matter of refraining what to hope for," Guss suggests. "There should always be hope — always, even for a dying patient."
There's hope in end-of-life care
Medicine is, in some ways, experiencing a repeat of what it went through a few decades ago in changing how it handled negative diagnoses. The once paternalistic tendency to shield patients from the full brunt of serious or terminal diagnoses gave way to the patient-autonomy-driven belief that more than anyone else, patients deserve to know what their health is.
The same process is happening now with the handling of prognoses — particularly when the clinician — or the patient believes the time has come to go from aggressive treatment to caring through the end of life.
"When you disclose a [negative] diagnosis, it's distressing, but you feel you can do something about it," Cripe says. "But a [negative] prognosis strikes at medicine's fear of not being able to do something."
Cripe wrote about a situation he experienced with a patient dying of leukemia. The patient, hospitalized and weak, was undergoing daily transfusions with no apparent benefit. When Cripe brought up the suggestion they talk about caring for him through the end of his life, the patient asked, "So you believe…that it's hopeless then?"3
Rather than pursue the subject, Cripe writes that he dropped it, and never resumed the conversation about hospice, advance directives, or end-of-life care. The patient died about a week later during an outpatient transfusion. Reflecting on that patient, Cripe delves into the different meanings of "hope." For that patient, hope meant pursuing treatment until the very end; Cripe writes that today, he would try to convey to that patient that there is hope in end-of-life care.
Fundamental to a patient such as the one Cripe describes, believing in hope at the end of life might lie in how the doctor-patient relationship has been framed up to that point.
"If a reasonable person were sitting with someone who has a 75% chance or greater of dying in the next 18 months, you would want to address that," Cripe explains. "So how do you model your relationship with someone in that situation so that at the end of their life, there's sufficient trust for you to say, 'I think it would be better to care for you as you die than to pursue chemotherapy.'"
If the relationship has not been modeled on more than the doctor's skill at writing prescriptions for chemotherapy, once chemo is no longer effective and is out of the picture, what is left holding the doctor-patient relationship together? Cripe asks.
"But if someone comes in with metastatic lung cancer, and you know there's a 75% to 80% chance they will be dead within a year, you don't want to tell them that, because that would only discourage them," he continues.
Instead, he suggests, "Ask, 'Tell me what your goals in life are, what you're hopeful for,' and then engage in dialogue about that."
If a patient's goal is to see a young child graduate from college, Cripe says a natural step might be to ask that if he couldn't see his son graduate from college, what's another goal? "How can we reframe that goal to preserve hope?"
Truth, gently told, need not end hope
Guss says patient care providers should take care to let patients express what their hopes are, and to reframe those hopes, gently, with truth. Hope that is "reframed" can be transformed from "hope for a cure" to hope for dignity, elimination of suffering, and greater wholeness.
"Certainly, a patient can hope to get better, hope to be cured, and you should encourage the patient to express those feelings," says Guss. "You can acknowledge those hopes and feelings, not put them down, but you don't have to feed into it either."
In his role as a clinical chaplain, Guss says he often works to help patients hear and understand what their physicians are saying — and with physicians on how best to deliver that information.
"St. Paul says [in the book of Ephesians], 'Speak the truth, speak it with love and gentleness,' and I think that's how it needs to be done by physicians," Guss says.
It can be difficult for anyone involved — physician, patient, family — to broach the subject of ending treatment and focusing on end-of-life care, but Guss says to do so is not only courageous, but compassionate.
"It takes an act of courage to break the conspiracy of silence," he says.
Whether a patient doesn't want to let his family down by bringing up end-of-life care and relinquishing chemotherapy, for example, or the family members avoid talking about death so as not to discourage the patient, Guss says, "Most people are well-intentioned, but sometimes those good intentions to be positive are creating negativity because everyone is not dealing with their inner feelings, and too often, those words of blessing and goodbye don't get spoken."
Cripe would like to see the definition of "prognosis" expanded.
"Yes, prognosis is the quantitative evaluation of survival, but the expanded definition is to describe the possibilities that remain — working through the implications of the possibilities and impossibilities of that patient's prognosis," he says.
If presented as a description of what the patient will likely experience, rather than emphasizing solely a measurable outcome, invites dialogue about the possibilities, Cripe suggests. "It's more about articulating a process than articulating goals."
Guss says the physician's own feelings about death have an impact on what he or she conveys to the patient.
"He or she can impart a fear of death based on [his or her] own discomfort, or see it as an opportunity to explore the awe of living, of which dying is part," Guss says. Drawing on family and other members of the care team at such times can be useful, he adds.
"The utmost gentleness, sensitivity, and respect for one's culture and dignity must be exercised through active, interactive listening and intentional presence," he explains. "Clinically trained chaplains and clergy can be a great asset to the health care team at such a time, whether or not the dying person or his family has a religious orientation or background."
End of life a 'feeling world'
Cripe says that for physicians to explain to patients that there are alternatives at the end of life that can be more valuable than chemotherapy, they first must believe it themselves; then, they have to develop the communication skills to get that message across.
"It's not about understanding a quantitative prognosis, it's about feeling and believing that end-of-life care is the better way of taking care of that patient," he says. "[We need] to get around the thinking that if someone dies, it's a failure. Once we figure out how we do this, and get around the emotional and spiritual distress, that's what we need to teach our patients."
Cripe says that in framing hopeful discussions about death, he relies on a quote from the book Young Men in a Fire by Norman Maclean: "In a journey of compassion, what we have ultimately as our guide is whatever understanding we may have gained along the way of ourselves and others, chiefly those close to us, so close to us that we have lived daily in their sufferings. From here on, then, in the blinding smoke it is no longer a 'seeing world' but a 'feeling world' — the pain of others and our compassion for them."
Evidence of the need for such communication skills, he says, is the breakdown of people he sees dying of cancer.
"You can divide them into three buckets. Relatively few people end up in the 'chemo to the very last minute' bucket; they're a hard nut to crack, because they want to pursue it to the very end. Then you have a few more who end up in the 'life ending naturally' bucket, who die in hospice or at home, taking advantage of end-of-life options.
"But you have a lot of people in what I call the 'indeterminate' bucket. They end up in the hospital, maybe not even aware they're dying, and these are the people I worry about. Nobody has ever sat down and told them, 'You're in the phase of your disease where we should talk about taking care of you as you die,'" he explains.
"And we can't teach this to our patients until those of us who value this behavior understand how we value this behavior."
References
- Rockwell LE. Truthtelling. J Clin Oncol 2007;25:454-455.
- Institute of Medicine of the National Academies. "Approaching Death: Improving Care at the End of Life." Washington, DC: Institute of Medicine; 1997.
- Cripe LD. Hope is the thing with feathers. JAMA 2006;296:1,815-1,816.
Sources
For more information, contact:
- Larry Cripe, MD, associate professor, department of medicine, division of hematology/oncology, Indiana University School of Medicine, Indianapolis. E-mail: [email protected].
- J. Vincent Guss, Jr., MDiv, chaplain, Falcons Landing Air Force Retired Officers Community, Potomac Falls, VA; editorial board, Association of Professional Chaplains. E-mail: [email protected].
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