In response to the fears of prospective hospice patients (see Part One), recent publicity from the hospice movement has been giving the impression, on the basis of a new research study by Stephen R. Connor and his colleagues, published in the Journal of Pain and Symptom Management in March, 2007, that hospice treatment may help patients live longer than non-hospice patients.
Does this mean that the fear of dying sooner in hospice can now be set aside?
Unfortunately not. I will explain why I believe these news releases are very misleading.
Why this Hospice Research Is Inapplicable to the Vast Majority of Patients Considering Hospice
First of all, the study covered only a few diseases. Second, it didn't show that going to hospice caused anybody to live longer. It could be simply that, because they lived longer, they had more opportunity to eventually choose hospice.
Finally, when I carefully examined who they chose to include in the study, I discovered that they included only the dyingest of the dying! Let me explain why I think this makes the study totally inapplicable to the vast majority of patients trying to decide about hospice.
Who was in the study? The authors of this study used medical records. It was much harder for a patient to get into this research study than it would be to get into a real life hospice! They excluded the records of anybody who underwent surgery that might have been be curative. They excluded the records of anybody who did not have certain medical claims in their chart indicating that their treatments were failing. They excluded the records of anybody who lived longer than three years after these medical claims. In a previous article in September 2004 in the same journal, the researchers explain that "the vast majority of dying patients would not meet the criteria" they used to select the patient records for their study. In other words, they picked only patients who, looking backwards in time, didn't have a chance of effective curative care — in other words, only patients who had nothing to lose when they signed away their right to "curative" care.
Let us consider an analogy. Suppose someone was trying to see whether an afterschool tutoring program could help students learn to read. Suppose he compared the reading scores of a group of students who were in the tutoring program to a group who were not in the program. Then, suppose he announced that the tutoring program was useless, because both groups did equally poorly and some students from the non-tutored group actually improved a little more than the tutored group.
Then, suppose you found out that he chose for his study only students who had profound developmental disabilities. Wouldn't this change your opinion of whether he proved that the tutoring program is useless for normal students?
This analogy applies to the hospice study. When hospice publicity encourages ill people to think of hospice as a place where their lives may be prolonged, they seem to be claiming that the patients who didn't go to hospice achieved absolutely nothing by remaining in "curative" care, that the extra medications that they took, the extra doctors' visits, the extra emergency room visits did absolutely nothing.
But when we see that, by their choice of diseases and their choice of subjects, they eliminated all the patients from the study for whom these "extras" would have been helpful, we will not be impressed that their non-hospice group didn't out-survive the hospice group. We will not think that this means that "curative" care is useless for everybody.
In real life, potential hospice patients are not rigorously screened, or even screened at all, for whether they have any potential to benefit from sustaining treatment, for example, medications that help keep their arteries and airways open and all sorts of emergency hospital treatment to unblock their arteries and airways and treat infections. Just because patients have a terminal disease that can't be cured doesn't mean that they can no longer benefit from sustaining treatment. In real life, the non-hospice group would most definitely include patients who were still receiving beneficial sustaining treatment that could be continued.
And, in real life, many hospice patients do die sooner. Ellen Fox and her colleagues, writing in the Journal of the American Medical Association in 1999, reported that, for their sample of non-cancer patients with end-stage heart, lung, or liver disease, it took 183 days for half of the non-hospice patients to die, but only 23 days for the hospice patients. Fox and her colleagues explained that this was possibly because "patients referred to hospice care are less likely to receive life-prolonging treatment and therefore die sooner."
A patient who is deciding whether to enter hospice should not rely upon these hospice news releases, which are, essentially, advertisements, to guide him. Only a detailed discussion with his trusted physician, preferably one who shares his religious values, will give him insight into whether giving up "curative" care is likely to be a risk for him.
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