I just gave Craig his 10 o’clock meds, and like always, when I nudged him to take his pills, he popped up slightly on his elbow, and began fishing around for them, one by one. With a mumble and a gulp, they were down, and so was he. Craig has a peculiar way of sleeping, which involves him resting on the bicep of his left arm. I’m surprised he still has feeling in that arm; mine would be numb. Sometimes, he’ll prop his head against the iron bars of his king-sized bed -- yet another of his comfortable resting positions. He looks so peaceful when he sleeps; his sleeping masks the fight that continues unabated. It’s been three months since C started Sorafenib. We had hoped, by now, he would be experiencing some clinical improvement from the chemo drug, but though it's helped to slow the tumor growth, he's still suffering from fatigue, nausea, and a host of other symptoms, which are negatively impacting his quality of life.
Recognizing that Craig’s symptoms haven’t improved, Dr. Flaig opened a dialogue today to discuss Craig’s goals with regards to his treatment, and based on where he is symptomatically. First, Dr. F. relayed the results of his latest blood work, which, aside from the Bilirubin, hasn’t worsened since last Thursday. His liver is still sick, but functioning and a little better than last week (now around 40-50%). We still don’t know why his liver is acting up. The likely culprit may be an obstruction or a stricture on the liver, to which surgery may be an option. (We’re still awaiting the MRI results, and will proceed accordingly based on what we hear.)
After discussing Craig’s report, Dr. F. gently began asking Craig questions about his quality of life, including how he feels compared to six weeks ago; if he’s happy with the chemo results thus far; and if he feels satisfied with his quality of life. He asked these calmly, and in a way that shaded his own opinion from that of Craig’s. Craig answered every question, with each response growing labored from sheer exhaustion. He said that he felt more tired than six weeks ago, when he felt he was more on the mend. He seems most distressed about his fatigue, which has prevented him from doing the things he loves, like reading, writing, and playing music. He said he can muster energy to do short activities, but even those are difficult; talking has become another short activity. Still, he feels he’s satisfied with his life (so far) and would like to continue. If I know my brother, he won’t be the one to say stop.
It broke my heart to hear him speak about his life, a life that was so vibrant and so full of promise just six months earlier. That he’s had to discuss his own treatment, and consider his own mortality less than one week after burying Mom seems particularly cruel. But there’s never a good time for such a discussion, and Dr. F. did it perfectly. He ended the discussion by saying that if C were to say that he no longer wanted to continue with the medicine, he would view it as a reasonable statement. He also added that he sees a lot of cancer patients, and that C seems to be fighting hard to be where he is. He noted that he had hoped C would be in a better position symptomatically, and though there’s still a chance he may turn the corner, Sorafenib hasn’t really helped C in terms of enhancing his energy.
That the discussion was raised is a testament to Dr. F’s professionalism, intuition, and ability to say the right thing, at the right time. Not all doctors are comfortable discussing such things with patients. A recent report suggests that “most cancer doctors avoid saying it’s the end” despite evidence that “keeping hope alive” and avoiding the big talk may do more harm than good.
Excerpts from MSN Article:
Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive. New research shows they are wrong. Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care. Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices.
Boiled down, it's 'Talking about dying will kill you,'" she said. In reality, "people crave these conversations, because without a full and candid discussion of what they're up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it."
Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.
In other words, straight talk may give some patients a sense of control. Knowing the likely short and long-term scenario allows cancer patients the opportunity to outline plans, and live out the rest of their lives accordingly. Seeing the merit in this, some States may soon require straight talk by law. The California Assembly has passed a bill requiring doctors and other health care professionals to speak honestly to dying patients if they ask about their treatment options.
Based on our experience with cancer and the uncertainties that go along with it, I feel straight talk regarding prognoses to be helpful insofar as the discussion identifies all options (including palliative care), outlines the benefits and risks associated with each, and allows the patient to guide their care based on their needs and life goals. But as Dr. Vredenburgh, Mom’s doctor from Duke University, notes, “People react differently…there are patients who want to talk about death and dying when I first meet them, before I ever treat them. There are other people who never will talk about it.” He adds that "Most patients know in their heart that the situation is grim, but people have an amazing capacity to deny or just keep fighting. For a majority of patients it's a relief to know and to just be able to talk about it."
The article notes that sometimes, it’s hardest for the doctors to speak frankly about a person’s grim diagnosis, as if, by doing so, they’ve somehow failed. Dr. F. has been honest and supportive throughout Craig’s care, and has allowed Craig to guide the direction of his treatment based on his goals and wishes. Mom, too, was able to guide her treatment based on honest information that was provided to her by her oncology team. I know Mom appreciated the opportunity to have some say. Based on today’s conversation, it’s clear that Craig also appreciates the opportunity to guide his care. We’re thankful that Mom and Craig have had doctors who believe in discussing options, and who recommend approaches that are in line with the patient's goals and wishes. For me, the ability to choose is the ultimate step toward dying with dignity. -- J
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