Thursday, April 16, 2009
JCO on hope & truth-telling
It seems that some of the best 'conversations' in journals right now about cancer communication are happening in the Art of Oncology section of Journal of Clinical Oncology. A recent issue had another discussion about hope and truth-telling, relating a story of a young woman dying of cancer. The patient wouldn't engage with the oncologist about what was really happening, the patient's family negotiated essentially a 'don't ask don't tell' approach, and so:
I arrived at her house late in the afternoon. Her husband and son were waiting at the doorstep, looking distressed, with tearful eyes. I went to her room on the first floor. She was lying in bed, receiving an intravenous infusion. She welcomed me with a big smile and said, "Doctor, do you believe this chemotherapy will work?" At first I thought she was confused, but then her sister whispered to me, "It's only folic acid in normal saline, but she believes it's chemotherapy." Not really knowing what to do, and almost against my will, I could not help saying, "I hope so." Two days later, her sister informed me that she had died quietly, in a drowsy state. "She was peaceful."Was this an OK thing to do? The authors more or less conclude that, in this situation, it was: not disclosing the truth helped this patient die peacefully, as she was someone for whom hope was exclusively wrapped up in hoping for a cure. Anything else would have led to despair. There are many issues here, but to me a key one is that despite 'the truth' never being explicitly stated, and the patient apparently being deceived into thinking she was receiving chemotherapy, this is a situation in which the patient nevertheless was provided a good death, at home, peaceful - and that her family which colluded in her deception as it were also ensured she died 'well.'
To look at it another way, the patient deferred decision making as well as informational control to her family who as far as you can tell from the case description made wise, patient-centered, and compassionate decisions for her (ignoring for the time being whether one thinks actively deceiving the patient is moral). That is, the patient didn't particularly need to know what was going on, insofar as she had ceded control of her care to her family. One gets the sense that she deliberately 'closed her eyes' to what was going on, turned away as she drifted away, and let her family do it all. This is not a situation in which a refusal to talk about 'the truth' was occurring in a context of requesting unreasonable treatments.
I personally think some collusion like this can be the right thing to do, and in fact I think we all collude to withhold the bare truth from our patients regularly, and my own standard is that it all depends on what the patient wants to know (I ask) and needs to know in order to make whatever decisions need to be made. This is an extreme example of that, which doesn't change the fact that most patients, most of the time, want to know most things (Big Picture-wise), and are often grateful to hear it as it often hasn't been stated in a clear, understandable way.
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3 Responses to “JCO on hope & truth-telling”
April 22, 2009
This post has been on my mind since I read it some days ago. I've returned to it twice for rereading. I can't help but be reminded of my mother in the last months of her life when she was on Hospice. She was 91 and had a variety of chronic health conditions, one of which was vascular dementia, to which I referred, appropriately, as Dementia-Lite. Although she'd had it for several years, after the initial onset it was non-progressive. It figured heavily in her attitude toward death (she died of lung cancer, diagnosed seven months before she died), though, and her ability to, well, frankly, lie to herself about her health and her survival prospects. I think her "lying" not only extended her life but was partially responsible for its high quality right up to its end.
No one, including her doctors, her nurses, her other family members or me, ever lied to her about her condition. She had, though, a little over a year before her death, decided and announced that she was immortal. Thus, although most of the time she dismissed her cancer, even though a few times she revealed to me that she knew she had lung cancer (she once used it as a delightful excuse for some hilariously bad behavior), while she was actively dying she did not believe she was dying. Staunchly empirical daughter that I am, during the last hours of her life I not only asked her if she was dying, my behavior toward her became ever more solicitous as her condition worsened and her disabilities and needs for care increased. I know she was grateful for the extra care, but she was indignantly dismissive when I launched into a "in case you're dying I want to say" speech. That settled that. From that moment on, although I suspected that she would be dead very soon, I went along with her belief that she had a bad cold and just needed to get through it. This allowed her to accept the obviously intensified care I was extending as necessary to the process of healing from "the cold".
As I look back on the experience, it's hard for me to say that I colluded in a lie. I think, in fact, I colluded in her truth, the truth she needed, upon which she insisted in the face of my ulterior knowledge, to retain a sense of dignity and well being through the last moments of her life.
I agree with your summary, Dr. Roselle, with this addendum: Truth changes, by day and by person. It is a sensitive and superior physician (or other health care professional), I think, who recognizes this in any situation, whether it is a "normal" health care situation or an "extraordinary" one (meaning the imminence of death) and is able to gracefully straddle both the professional truth and the personal truth in order to maintain a balance that allows the patient a sense of dignity and well-being, no matter what are the bald health circumstances. More power to all health care professionals who so collude with their patients.
April 23, 2009
Gail thanks for your comments. What struck me about them was that despite your mother's 'lack of interest' in talking about or at times outright 'denial' of her impending death, that wasn't happening in a context of her or you seeking/receiving 'inappropriate' or 'unrealistic' medical care. Ie - she allowed you to make sure she received (hopefully excellent) hospice and terminal care as she died, in a safe environment, comfortably. It sounds like, clearly, letting her put boundaries on what could/could not be said worked for her, and helped her in her final months (and it also sounds like while you'd rather have spoken about things openly, you accepted, were ok with this).
The 'problem' so to speak about colluding with patients to hide the truth is when it is done in a context of patients seeking and (frequently) doctors providing inappropriate, ineffective treatments as someone dies. To me, these are very different situations.
Anyway: thank you for continuing to share your thoughtful and gracious comments on our blogs the last few months.
April 24, 2009
As I learn and experience more about different cultures, I've come to realize how much we consider our own "American Culture" as the "morally correct" culture to follow...
There are cultures that see us cruel because we are so honest with patients. In the vast majority of American or Americanized patients--this is what people want--honesty tempered with compassion.
But that doesn't mean that it's the only way to face difficult issues.
I think we need to learn from our patients and not just preach our own beliefs. And that includes when they may desire the "truth" to be on their own terms...
As Gail said: "Truth changes, by day and by person".
Although it may be very difficult to straddle that fence, I think we all need to try to learn how to do it sometimes.
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