How frequently do family members have concerns about the quality of care provided to a deceased relative at the end of life?

Up to one-half of family members expressed concerns about some aspects of the care delivered to a deceased relative at the end of life. The issue eliciting the greatest concern was emotional support for the patient and family. Family members generally had fewest concerns for patients who died at home with hospice care. Among people with a family member who died from cancer, most reported that care at end of life generally honored their family member's wishes, but more than one-quarter reported that their family member did not have a "good death."

Why is this important?

As medical care has changed over the last century, deaths today are more likely to occur in health care institutions than in individuals' homes (BMS 2004). In response to concerns about the quality of care at the end of life, the Institute of Medicine (IOM) recommended that health care stakeholders collaborate to strengthen methods for measuring the quality of care for dying patients and their families (IOM 1997).

The IOM defined a "good death" as one that is: "free from avoidable distress and suffering for patients, families, and their caregivers; in general accord with the patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards" (IOM 1997).

Research suggests that patient- and family-centered end-of-life care involves providing dying individuals with desired physical comfort and emotional support, supporting shared decision-making, treating the dying person with respect, providing emotional support to family members, and coordinating care across settings (Lorenz et al. 2004; Teno et al. 2001).

Findings

In a nationally representative study, 15 percent to 50 percent of family members expressed concerns about some aspects of the care delivered at the end of life to a relative who died in 2000 from chronic illness (average age 74). Inadequate emotional support for the patient and family were the most frequently cited concerns across all settings and types of care.

Family members of patients who died at home with hospice care were less likely to report concerns than were family members of patients who died with other care arrangements (home without hospice care) or in other settings (nursing home or hospital). Moreover, these families were more likely to rate the overall quality of care as excellent (71% vs. 42% to 47%) (Teno et al. 2004).

In another national survey conducted in 2006, most (88%) of those with a family member who was treated for and died of cancer in the past five years reported that "their family member's wishes about care at the end of life were generally followed." On the other hand, more than one-quarter (27%) reported that "things happened to make it a bad death"—that is, things did not go as well as expected (USA Today/Kaiser Family Foundation/Harvard School of Public Health 2006).

Implications

Family concerns about care at end-of-life suggest that health care providers are not always meeting expectations of patients and their families for "death with dignity." The nation would benefit from ongoing measurement and quality improvement activities focused on the quality of end-of-life care.

Improvement Ideas and Resources

The Institute of Medicine recommended changes in health care organization, financing, regulation, and professional education to improve care at the end of life (IOM 1997). Experts on end-of-life care have called for new programs "to encourage coordination of care; better match services to the needs of patients; better provide education and incentives; and better support formal and informal caregivers (Shugarman et al. 2005).

• A Toolkit of Instruments to Measure End of Life Care was developed by the Brown University Medical School, with more recent updates by the AHRQ Southern California Evidence-Based Practice Center (Lorenz et al. 2004).
• The Inter-Institutional Collaborating Network On End-of-life Care offers free access to reviewed educational materials on end-of-life care from more than 40 contributing health care organizations.
• The Center for Practical Bioethics publishes State Initiatives in End-of-Life Care, a policy series that "advances balanced approaches to pain management policy, consumer protection, and professional development."

Measure:

The Study of Care at the Last Place of Care asked family respondents about the quality of health care at the last place that a deceased relative spent at least 48 hours. Those who died at home without any formal care (13 percent of study subjects) were excluded from the analysis. Data were weighted to be nationally representative.

• Concerns with unmet needs for patient physical comfort and emotional support means that the respondent said that the patient did not receive any or not enough help with emotional distress, shortness of breath, or pain.
• Concerns with shared decision-making means that the respondent wanted but did not have contact with a physician, or respondents with physician contact had concerns about physician communication.
• Concerns about patient respect means the respondent said that the patient was not always (only usually, sometimes, or never) treated with respect.
• Concerns about the needs of the family means the respondent had concerns about family emotional support or about information regarding what to expect while the patient was dying.
• Concerns about care coordination means the respondent said staff did not know enough about the patient's medical history to provide the best care.

After controlling for potentially confounding factors (decedent's age, years of education, sex, race, underlying cause of death, and the respondent's perceptions of whether death was unexpected and the decedent' s functional status), ratings for pain control, emotional support, and treating patients with respect were significantly better for those who died at home with hospice care than for those who received all other types of care (Teno et al. 2004).

The population represented in questions derived from the National Survey of Household Affected by Cancer is adults with a family member in their household who was diagnosed with or treated for cancer (other than non-melanoma skin cancer) in the past five years (USA Today/Kaiser Family Foundation/Harvard School of Public Health 2006).

Limitations:

Family perceptions are subject to potential recall bias. Family members might not have accurate knowledge of patient's unmet needs (McPherson and Addington-Hall 2003). Results by last place of care might be influenced to some degree by patients' self-selection of the place of care. Note: results from the two surveys are not directly comparable because of differences in methods.

Source:

The Study of Care at the Last Place of Care was conducted by researchers at Brown University and the University of Massachusetts using a mortality follow-back survey of 1,578 adults who died of chronic illness in 2000. Interviews were conducted with informants listed on death certificates, who were typically family members, or someone else whom the informant recommended as knowledgeable about the person's death (response rate 65 percent) (Teno et al. 2004).

The National Survey of Households Affected by Cancer was jointly designed and analyzed by representatives of USA Today, the Kaiser Family Foundation, and the Harvard School of Public Health. The survey was conducted August 1 to September 14, 2006, with a nationally representative sample of 930 adults who reported that they or a family member were diagnosed or treated for cancer (other than non-melanoma skin cancer) in the past five years.

References:

* Indicates source of data used in the chart(s).

BMS (Brown Medical School). 2004. Brown Atlas of Dying. Providence, R.I.: Brown University, Center for Gerontology and Health Care Research.

IOM (Institute of Medicine). 1997. Approaching Death: Improving Care at the End of Life. Washington, D.C.: National Academy Press.

Lorenz, K., J. Lynn, S. C. Morton et al. 2004. End-of-Life Care and Outcomes. Evidence report/technology assessment (Summary) (110): 1–6.

McPherson, C. J., and J. M. Addington-Hall. 2003. Judging the Quality of Care at the End of Life: Can Proxies Provide Reliable Information? Social Science and Medicine 56 (1): 95–109.

Shugarman, L. R., K. Lorenz, and J. Lynn. 2005. End-of-Life Care: An Agenda for Policy Improvement. Clinics in Geriatric Medicine 21 (1): 255–72, xi.

Teno, J. M., V. A. Casey, L. C. Welch et al. 2001. Patient-Focused, Family-Centered End-of-Life Medical Care: Views of the Guidelines and Bereaved Family Members. Journal of Pain and Symptom Management. 22 (3): 738–51.

* Teno, J. M., B. R. Clarridge, V. Casey et al. 2004. Family Perspectives on End-of-Life Care at the Last Place of Care. Journal of the American Medical Association 291 (1): 88–93.

* USA Today/Kaiser Family Foundation/Harvard School of Public Health 2006. National Survey of Households Affected by Cancer. Menlo Park, Calif.: The Henry J. Kaiser Family Foundation.