Life-Limiting Diseases

Laurie Scudder, DNP, NP


October 05, 2011

Comparing Three Life-Limiting Diseases: Does Diagnosis Matter or Is Sick, Sick?

Steinhauser KE, Arnold RM, Olsen MK, et al
J Pain Symptom Manage. 2011;42:331-341


Study Summary

Background. Advanced cancer, congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD) are some of the most prevalent life-limiting conditions seen in adults. Although in their advanced stages these diseases have similar 1-year mortality rates, research has shown that patients with these conditions are treated differently by healthcare professionals. Cancer is recognized and treated as a terminal illness, but CHF and COPD are more often viewed as chronic, rather than terminal, conditions. This study sought to determine the impact of diagnostic category on patient outcomes, including quality of life, functional status, and emotional well being, to determine if the illness experience differed significantly among patients with these 3 diagnoses.

Methodology. The study used a cross-sectional cohort design including 210 patients, identified through hospital databases, equally divided between the 3 diagnostic groups. Most were not working; 50% of the sample were retired and 25% were on disability. Inclusion criteria were crafted to identify patients with a 2-year survival rate of 50% and included the following cohorts:

  • Cancer cohort: Stage 4 breast, colorectal, and prostate cancer; stage 3b or 4 lung cancer;

  • CHF cohort: New York Heart Association stage 3 or 4 CHF with a left ventricular ejection fraction < 40%; and

  • COPD cohort: Hypercapnea (pCO2 > 46 mm Hg) and at least 1 hospitalization or emergency department visit in the previous year.

Data were collected at baseline and monthly intervals for up to 6 years or until the time of death, which allowed the researchers to capture transitions at the end of life. In addition to demographic and diagnostic data, tools to assess activities of daily living, anxiety, and depression were administered. Disease severity was calculated as a cross product of number of bed days (defined as days spent mostly in bed, chair, or couch) and self-rated health.

Results. The patient sample was broadly diverse. Just over half were men and a similar percentage were married. The average age was 66 years. Equal percentages (44%) had a high school education or had attended some college. Almost two thirds of participants (61%) were white and the remainder black. The sample also displayed a wide range of financial well-being. About one quarter of the sample reported difficulty paying bills, 13% noted that they had to cut back to pay bills, 27% described themselves as having a little extra money to spare, and the remaining one third reported having money for "luxury" expenses such as travel.

Quality of life subscales -- emotional, social, and physical -- did not differ between patient cohorts. Measures of anxiety and depression did vary, however. CHF and COPD patients had higher levels of both compared with cancer patients. Controlling for demographic variables attenuated some of the differences on measures of depression, underscoring that poorer patients had higher levels of depression. The CHF and COPD cohorts also fared worse on measures of functional well being, with higher rates of functional dependence found in these patients.

Poor health, as measured by the cross product of bed days and self-reported health, was most common (39%) in the CHF group. A slightly smaller percentage of COPD patients (33%) were similarly found to be in poor health. In contrast, only 21%, of cancer patients received a rating of poor health.

Disease category predicted only functional status, with CHF and COPD patients displaying the poorest functional ability. Disease severity and emotional and social factors, rather than diagnosis, more often determined the illness experience. Quality of life, depression, and anxiety were more strongly linked to gender, ethnicity, education, and economic security than to diagnosis.


The results of this very well done and far-sighted study seem to support the contention postulated in the title -- that being sick, regardless of diagnosis, is what matters. The finding that disease severity is more relevant than the particular disease category argues for management that places a greater emphasis on the impact of a particular illness rather than the specific pathophysiology. Of interest, cancer patients, who evidence similar or better levels of functional well being and quality of life compared with CHF or COPD patients, often have a much wider array of services available to them. Additionally, cancer patients are more likely to be viewed by healthcare providers as innocent victims, whereas CHF and COPD patients are often perceived as suffering from a condition that was the result of their own lifestyle choices such as smoking or obesity.

The results of this study argue for the use of extended service models, such as those found in comprehensive cancer centers, for patients with noncancer life-limiting diseases. Until that day, however, nurses are in a unique position, both in and out of hospital settings, to provide the holistic and supportive care that clearly is needed in these patient populations.

Additionally, it behooves all healthcare providers to recognize the bias, often unconscious, that is displayed towards patients with diagnoses resulting, at least in part, from lifestyle choices. I suspect that most COPD patients, given the opportunity for a "do over," would wish they had made a more committed effort to quit smoking. They clearly can't go back and reverse that choice, so the next best thing would be for those of us in the healthcare environment to suspend our judgment and display the same compassion that is extended to cancer patients.


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