Abstract
Primary care providers often find themselves serving patients at the end of life. Some are still in their homes and some are in long-term care facilities. As the population ages, the proportion of primary care patients receiving end-of-life care increases. And since end-of-life in the primary care patient affects spouse, children, and friends, the fraction of the population feeling the impact is multiplied. End of life is a community health issue.
Consequently, the quality of end-of-life care is of concern to the readership of this journal. High-quality care is defined as care that can be expected to optimize the balance of benefits and risks from the patient’s perspective. 1 This definition grounds good care in the patient’s own preferences and makes patient satisfaction a legitimate form of quality assessment. Assessment of satisfaction with end-of-life care is eminently feasible, as will be demonstrated below.
Patient satisfaction with health services has been assessed at the end of life most often with after-death surveys of family members. A variety of survey questions have been employed, but the ones discussed below have been validated by cross-correlation between 2 scales, the Quality of Dying and Death (QODD) Questionaire 2 and the Memorial Symptom Assessment Scale (MSAS). 3 The wording of the questions listed below follows the MSAS, but similar items are used by commercial satisfaction assessment systems.
The first 3 questions address symptom and treatment experience. They are:
1. During the last month, did you feel the doctor could have done more to help control x’s symptoms?
2. During the last month, did you feel the nurse could have done more to help control x’s symptoms?
3. During the last month, did x have to wait too long to be treated for his/her symptoms?
Two other questions concern preferences for end-of-life care:
4. Before x died, did you ever discuss issues of death and dying with him/her?
5. How much were x’s preferences for medical care followed during the last 7 days/last month of his/her life?
Interestingly, the QODD validation study 2 did not reveal significant support for 2 bulwarks of end-of-life care, the living will and the power of attorney. Those documents are important in their own right but do not appear to directly affect satisfaction with end-of-life care.
Most health care providers today recognize the importance of communication with patients and families. Two simple questions get at this issue:
6. How well did the health care team listen to you?
7. How much did the health care team explain x’s condition to you?
8. Was there a doctor (or nurse) who you feel was primarily responsible for x’s care?
Another important issue is round-the-clock access to services that are needed by the end-of-life patient.
9. Was appropriate care available on nights and weekends?
The importance of this issue bears directly on the decision about where services will be received. Many patients do not want to remain in an acute hospital, but going home might mean that some services are not available as quickly. Nursing home placement might be a compromise solution.
When it came to spiritual and religious matters, having someone on the health care team to talk with about spiritual or religious concerns was not significantly related to overall assessment of the quality of end-of-life care. However, 3 other issues were of concern and are captured by questions such as these.
10. Did x have an opportunity to talk with a spiritual counselor from the community?
11. Did x have an opportunity to attend worship services?
12. Did x have an opportunity to pray with family or friends community?
The dozen questions listed above are not being promoted as a perfect set or even as being better than alternatives that can be found via Web searching. They are mentioned here instead to demonstrate that satisfaction with end-of-life care can be readily assessed. The point, of course, is that providers of end-of-life care should be monitoring satisfaction with their services. This includes hospices and nursing homes as well as hospitals.
Many end-of-life care providers are monitoring satisfaction. But how many are doing so during the episode of care instead of after death? Since a few good questions are available for the purpose, monitoring systems can be readily established. By directing the monitoring at patients and families during treatment, problems can be identified and addressed before it is too late to make a difference. The data collected can be used to track trends in satisfaction and compare different sites of care within the same organization.
The techniques, energy, and skills that primary care investigators apply to assessing and improving innovative practices in their clinics and outreach programs can also be applied to end-of-life care. Yet, few studies have been published in the primary care literature on this topic. It is time to direct the searchlight of our investigative skills toward the understudied area of end-of-life care.