Decision making preferences; Symptoms in lung cancer

1)
Journal of the American Geriatrics Society has a longitudinal study about decision making preferences in the elderly. It looked at 147 patients with advanced illnesses (metastatic cancer, ALS, or heart failure with a likely prognosis of less than 2 years) who were prospectively followed for up to two years. They were asked a series of questions about how they wanted their physicians to make decisions for them if incapacitated (on a continuum from completely based on what they think the patient wants to completely based on what the physician thinks is best) as well as how they would want their loved ones to make decisions for them if they were incapacitated (on a continuum from the loved ones making decisions based on what they thought the patient would want to based simply on what the loved ones think is best for the patient...they were trying to capture how much patients would endorse a 'substituted judgment' ideal as opposed to a 'best interests' ideal). It is similar in some ways to this paper I recently blogged about - both papers use the same basic scale to measure decision making preferences (that post also explains what the 'blogging on peer reviewed research' icon is all about for those of you who missed it).

At baseline there was a wide spread of preferences, with most answers in the middle, however they were definitely skewed towards relying more on substituted judgment (and not 'best interests') and more passivity/reliance on physicians in regards to how they prefer to make decisions. The preferences regarding loved ones pretty much stayed stable over time, and not surprisingly older patients (over 80) endorsed a 'best interests' standard more than younger ones. Preferences for physician involvement for decision making shifted, slightly but significantly, towards more substituted judgment over time, particularly in college-educated patients.

Several points here: the findings broadly support the idea that patient's decision-making styles/preferences are stable overtime, suggesting that advance care planning - talking with people as to how they want decisions made when they are relatively healthy - is a reasonable endeavor. This is also further research that the ideal of substituted judgment may not even be much of an ideal (in the sense of being what we should be striving towards). Patients themselves don't endorse it, instead endorsing (I'm speaking broadly here) a mixture of patient preference and physician recommendation of what's in a patient's 'best interests.' This is of course how most patients, most of the time, make decisions anyway, and so none of this is surprising. There are very few patients, after all, who wouldn't take into account their physicians' recommendations about the best thing to do: this is what physicians do and if all patients needed to do was to look their problems up on WebMD and 'decide for themselves' physicians wouldn't be needed anyway.

Two questions raised by this study: what is going on behind those shifts towards substituted judgment over time by many of the patients in this study? What drives that - could this be a marker of something deeper in the way patients conceive their disease, their story, and their role in it, in some way that changes over time? The other question I had is what did the patients themselves think about this attempt at distinguishing between what people think is in their 'best interests' vs. what people think they, themselves, would choose? Wouldn't they choose what was in their best interests? While clearly patients went along with the research and answered these questions (and most of them wisely answered somewhere in the middle), did they think that these distinctions, which have historically been important from a medical-ethical-legal perspective, were in fact coherent, meaningful distinctions?

Sulmasy, D.P., Hughes, M.T., Thompson, R.E., Astrow, A.B., Terry, P.B., Kub, J., Nolan, M.T. (2007). How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study. Journal of the American Geriatrics Society DOI: 10.1111/j.1532-5415.2007.01473.x

2)
Journal of Clinical Oncology has an article about symptom prevalence in lung cancer in relation to time of death. The study involved prospectively gathered symptom data from 400 Swedish patients (mean age 66 years) starting shortly after they were diagnosed with inoperable lung cancer. Data were gathered at multiple, pre-specified points up to 1 year after diagnosis. Symptom prevalence, intensity, and distress were all measured. Most patients died during that year, and the researchers analyzed their symptoms as a function of time before death (comparing those in the last month of life; last 1-2 months of life; 2-3 months; etc.).

Reflecting the number of data points they gathered, this article has a couple of the most astonishingly complicated tables I have ever seen in a clinical research article: if Edward Tufte was dead he'd be rolling in his grave. They are bad enough to be described as non-"human-readable." Thankfully, there is text to summarize them: breathing problems, pain, and fatigue were consistently rated as the most distressing symptoms, and most symptoms, notably pain and dyspnea, worsened as death approached. Half of the patients approached to participate in the study declined, and a good percent of them declined because they were too fatigued or ill-feeling; one wonders how much worse the findings would have been if these patients had participated.

The fact that symptoms and function worsen as one dies is not surprising or new (although rarely presented in such glorious detail). The more interesting finding is that symptom distress was less predicted by symptom intensity earlier on in the disease (later one distress and intensity closely correlated): pain and dyspnea were relatively mild early on, but still rated as among the most distressing. The authors speculate that anxiety/worry early on about future severe symptoms (of pain and dyspnea) may actually make low-grade pain and dyspnea that much distressing even early in the course of inoperable lung cancer. It's the worry about the symptoms, the realization that they will inevitably get worse, which make them so distressing early on. An interesting hypothesis raised by these data; one hopes they look into it further (it may be amenable to intervention via simple reassurance).

Tishelman, C., Petersson, L., Degner, L.F., Sprangers, M.A. (2007). Symptom Prevalence, Intensity, and Distress in Patients With Inoperable Lung Cancer in Relation to Time of Death. Journal of Clinical Oncology, 25(34), 5381-5389. DOI: 10.1200/JCO.2006.08.7874

3)
BMJ has a news article about the Royal College of Physicians audit on death & dying in UK hospitals.

"But hospitals were less good at delivering bad news. Only 57% of the patients had been told that they did not have long to live, and only 45% recognised the nature of their condition. However, over 80% of carers were aware of the diagnosis, indicating that staff find it easier to discuss the issue of dying with relatives and friends."

Or the patients, themselves, were too sick to even receive the news? This is not discussed in the news item. I'd be fascinated to see a similar audit done in the US, but doubt that will happen since we don't have an integrated health system.

4)
Thanks, Christian, for setting up the Pallimed donation celebration. We are doing this for you Pallimed readers who are also Pallimed appreciators and want to show it in this way. Thank you. And yes there's some schwag that Christian cooked up, as well the quite useful Hospice & Palliative Care Formulary (US version) that the editors at Palliativedrugs donated.

Posted by Drew Rosielle MD on Tuesday, December 11, 2007

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