Measuring satisfaction of terminally ill and families
May 1, 1997
Measuring satisfaction of terminally ill and families
New emphasis on quality of death’
Even hospitals deeply committed to measuring patient satisfaction and acting on the results can get somewhat flustered when a sensitive topic comes up how to measure the satisfaction of patients who will die in the hospital.
"Surveying dying patients is really awkward to address," admits Sarah Mulkey, director of patient relations at Hendrick Medical Center in Abilene, TX. She says that right or wrong, people seem to step back from a dying patient and don’t offer the typical customer service.
"I guess you just hope those patients are identified on the unit as having unique needs, and then pastoral caregivers can step in to provide support and grief counseling," Mulkey says.
Recent public debate about physician-assisted suicide has brought new attention to the rights and suffering of terminally ill patients. Hospitals have new awareness about how they handle these patients and whether the patients and their families are satisfied with care in the final days of life. The Center to Improve Care of the Dying at George Washington University Medical Center in Washington, DC, receives numerous calls from hospitals looking for a satisfaction survey instrument for their dying patients.
No easy answers for how to survey
"Terminally ill patients are indeed being left out of the surveying process," says Joan Teno, MD, MS, associate professor of health care sciences and medicine and associate director of the center. "We are putting together a toolkit for hospitals working with these patients. The difficult part is the development of measures," she explains.
Teno will not offer "four or five fast tips" for surveying dying patients. Instead, she says, hospitals must review literature on the special needs of dying patients, fully understand the implications, and make their own judgments. To aid this process, the center has designed a page for the World Wide Web dedicated to sharing information on care of the dying. The address is: http://www.gwu.edu//~cicd/CICD.HTM.
In the meantime, hospitals won’t find any answers for this special patient population in traditional survey tools.
Hendrick, for example, uses a standard mail survey instrument, which, of course, cannot be used to survey patients who die before their hospital stay ends. "We feel it would be very insensitive to the family to mail a survey to their home after they have lost a loved one. The closest we come to measuring this type of information is if a patient goes home, completes a survey, and then dies shortly after," Mulkey says.
As a result, Hendrick has no satisfaction data from terminally ill patients.
But that will change soon, when Hendrick opens a seven-bed hospice unit for patients expected to die within days. "For the first time, we really will look at surveying this special population. I would be very interested to see what the Center to Improve Care of the Dying develops," Mulkey says.
Use a good tool
Teno says the center has yet to determine how to help hospitals report the satisfaction data, benchmark them, or act on them. "We just need to get some measures out first," she stresses.
Mortality rates, the typical measurement hospitals use with the terminally ill, only tell us about the dead. Measures of the quality of life at the end provide information with which to judge service and make improvements for the next patient.
Survey design is critical to getting effective data for QI purposes from dying patients, says Anthony Back, MD, assistant professor at the University of Washington and a physician at the Veterans Affairs Puget Sound Health Care System, both in Seattle.
"For example, you must keep in mind that these patients have a limited attention span because they are under sedation, pain medication, or are even delirious. Open-ended questions wouldn’t work, and a survey that the patient has to read by him or herself wouldn’t work," he says.
Staff must be well-trained
As important as the design of the survey is the training of those who conduct it. Satisfaction staff must remember that although data from this population are valuable, the time dying patients have is even more valuable and must be well used.
"As a clinician, I guard the time patients have. Do they really need to be filling out some questionnaire when they have just a few hours to spend with their families?" asks C. Mary Dingus, PhD, clinical health psychologist at the Veterans Affairs Puget Sound Health Care System. She stresses that if terminally ill patients are to be surveyed, it had better be done quickly by a sensitive, well-trained professional.
"It does make sense to gather data from dying patients in order to make improvements in care, but the key is the level of skill used when surveying," Dingus stresses.
Before a staff member enters a patient’s room with a survey, that person needs to know how to deal with what may be going on inside. Satisfaction surveyors must be trained in the following areas:
• Sensitivity. Obviously, this is a difficult time, and surveys are the last thing on anyone’s mind. Surveyors should stress that the feelings and opinions of the patient and the family are important to the hospital because they teach the staff about the needs of terminal patients.
• Verbal and nonverbal messages given by patients and family. Dingus advises that surveyors should either be clinicians or have worked closely with them to be able to understand how patients and families react to the survey and its questions. Nonverbal messages may hold the real answers.
Timing is everything
• Timing. "The person with the survey needs to know when it is a good or bad time to be around. They need to be able to give their regards, say Thank you,’ and get out," says Dingus. As for the survey instruments themselves, Dingus says questions and questionnaires must be kept short.
• Ethnic identification. "Know about the patient as a person before going into a room. Know the patient’s culture, his language, how he thinks about what is going on before asking him questions," says Dingus.
Back adds these suggestions for surveyor training:
• Know the grieving process. "An interviewer needs to know where the patient and family are in terms of their states of mind," Back says.
• Understand the clinical aspects of care for the dying. This helps the interviewer realize what stage of the dying process the patient is in.
Comfort, dignity, and support
As for the survey questions themselves, outcomes measures that deal with comfort, dignity, and the availability of support services will be important to dying patients and their families. Satisfaction ratings that measure only medical care will not be enough, Teno notes.
"It is fundamental to terminally ill patients that practitioners learn to change their goals from emphasis on extending life to medical care that focuses on patient comfort," says Teno.
The family experience is a crucial satisfaction measure. "Dying is not only what the patient experiences, but also what remains in the memories of those who live on," she says, quoting C. Saunders in the Textbook of Pain (Edinburgh: Churchill Livingstone; 1989, pp. 624-63).
Some in the medical community, however, argue that patients and families are not accurate judges of the technical competence of health care providers and institutions, Teno says. Patients and their families may skew survey results by putting too much emphasis on the interpersonal skills of the provider because they are in such an emotional situation, she explains.
In response, hospitals and researchers should be specific with the questions they ask patients and family members (for example, "Were you told of the purpose of your medication in a way that you could understand?") so there is little room for interpretation.
In many cases, family members must act as proxies on satisfaction surveys. "In interviewing the seriously ill, we found that nearly half of the respondents were not able to be interviewed about their medical care," Teno says.
The use of proxy data is important, but it cannot accurately report the patient’s experience. A family member may believe, for instance, that a loved one is in severe pain because of a physical sign. But that sign may not really be indicative of severe pain. Using proxy data, however, is better than ignoring the patient’s satisfaction rating, she says.
Judge reports and rankings by the satisfaction of terminally ill patients, Teno suggests. She explains the difference this way: One physician could tell a patient, "If we remove your breathing tube, you will die. Do you want to die?" Another physician might say, "We need to discuss your feelings to help us make the best treatment decision regarding continuation of the ventilator that is helping you breathe now." Patients and families would report that both physicians discussed life-sustaining treatment. Yet their satisfaction with each conversation would be quite different.
Hospitals should get to the core of that difference with the survey instrument they select. Unfortunately, some organizations may not feel the need to delve that far.
Teno notes that the number of dying patients in the majority of managed care organizations, as well as in hospitals, is probably small. For example, she is assessing an 80,000-person managed care organization in Washington in which about 80 people die each year.
"From a standpoint of prudent business, it may not make sense" to focus on such a small number of patients, she says. "But because dying is such a profound human experience, health care delivery systems should examine and achieve quality medical care at the end of life."
"A good thing is that, while the patient population may be small, most hospitals are still willing to be reflective," says Dingus.
[Editor’s note: For more information on the toolkit for measuring terminally ill patient satisfaction, contact Joan Teno, MD, MS, at the Center to Improve Care of the Dying at George Washington University, (202) 467-2222; http://www.gwu.edu//~cicd/ CICD.HTM.
Contact Sarah Mulkey, director of patient relations at Hendrick Medical Center, (915) 670-2731.
C. Mary Dingus, PhD, can be reached at the Veterans Affairs Medical Center, (206) 764-2185.
Anthony Back co-wrote a study on physician-assisted suicide and euthanasia in Washington State, published in the Journal of the American Medical Association 1996; 275:919-925.]
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