For in-hospital deaths in early 1997, 33% of family members reported that their loved one had moderate to severe pain in the last week of life. In late 1997, the rate was 57%.7
One year after our first survey, the rate was 54%. Over the 26-month period in which the original and follow-up studies took place, the percentage of in-hospital deaths in Oregon remained stable at approximately 31%.11
The Oregon political climate has been volatile during the past 4 years (). Although our study is not robust enough to say that the number of patients dying in pain in hospitals is increasing, we are concerned about this aspect of patient care and the possible effect of political decisions on the levels of pain relief given to patients.
Family reports of pain in dying hospitalized patients and concurrent events. Intractable Pain Bill refers to ORS 677.485. PAS = physician-assisted suicide; BME = Oregon Board of Medical Examiners; DEA = Drug Enforcement Administration
Oregon is the only state in the country whose voters have twice voted to approve an initiative legalizing physician-assisted suicide. The initiative was first passed in 1994 but was put on hold by a court injunction. In the months before the second vote in November 1997, extensive media coverage of the debates about physician-assisted suicide also included related topics such as advance directives, pain management, and hospice care, which educated the public about end-of-life care. The court injunction was quietly lifted in late October 1997, days before voters reaffirmed the initiative a second time.
Following the 1994 affirmative vote on physician-assisted suicide, early data suggested that end-of-life care in Oregon was fairly progressive.12,13,14,15
For example, advance planning for those with serious or life-threatening illness was and still is common.13,16
With the development of comfort-care teams and rising rates of hospice referral,12,13
pain and symptom management also appeared to be improving. In Orgon, the prescription amounts of morphine for all uses was higher in 1998 than it had been in 1997, and Oregon continues to be a leader in the use of morphine per 100,000 population,17
despite family reports of moderate to severe pain for a substantial percentage of dying hospitalized patients.
There may be several reasons that hospitalized patients are still dying in pain. It is possible that the media coverage of late 1997 led families to become more sensitive to the undertreatment of pain and thus to report higher levels of pain when pain was, in reality, no worse. If true, however, the effect did not generalize to families of patients dying in other settings. It may be that hospitals are currently doing more than other settings to heighten family awareness of pain management issues. For example, some Oregon hospitals have posted signs encouraging patients to tell physicians and nurses about their pain, and other hospitals have made pain the fifth vital sign. However, an increase in family expectations about pain management is likely to be only one factor contributing to family reports of increased pain in this subgroup of patients.
Another contributing factor may be that physicians and nurses perceive that they are subject to greater scrutiny from their peers in acute care hospital settings, leaving them more susceptible to pressures that could affect their practice. Other investigators have raised concerns regarding the adverse effects of scrutiny and threats of investigation on physician prescribing of controlled substances.18,19,20
The Institute of Medicine recently reported threats of investigation and legal barriers to prescribing controlled substances as among the reasons physicians undertreat pain.3
Given our difficulty in reaching many family members in our sample, sampling biases may affect the generalizability of our findings. However, unless Oregon death certificates contain informant contact information in the future, it is hard to imagine obtaining a better response rate on a random sample of Oregon death certificates. We did not directly measure patient pain, and several studies suggest that family caregivers have inaccurate perceptions of patient pain.21
We also did not define pain or distress, and respondents may have interpreted these words differently.
Although it is difficult to collect data that will provide proof of connections between complex historical events and patient care (), we must not pretend that patient care happens in a vacuum. End-of-life care in Oregon is subject to a variety of complex, volatile political and regulatory forces that are both local and national, and so many families reporting that their loved one experienced moderate to severe pain in the last week of life is worrisome. Since data collection, further changes have taken place. Exploring the effects of environmental factors on pain management may have implications for practice and policy nationwide.