Critical Care Plus: Survey Tool Measures Quality, Satisfaction with End-of-Life Care

Family and Caregiver Stresses Need More Attention, Research Shows

Developing a research survey instrument is a lengthy and complicated process, says Daniel P. Sulmasy, OFM, MD, PhD, of the John J. Conley Department of Ethics at Saint Vincent’s Hospital in Manhattan. Sulmasy and several colleagues spent five years developing an instrument that elicits ratings of quality and satisfaction with care from medical inpatients, especially those near the end of life.

The team conducted focus groups with terminally ill patients to learn about their greatest concerns. The resulting Quality of End-of-Life Care and Satisfaction With Treatment scale (scored from 1.0-5.0) is now used with standard measures of symptoms, anxiety, depression, and delirium. The researchers then did a cross-sectional survey of 84 seriously ill medical inpatients at two academic medical centers. Forty-five had do-not-resuscitate orders.

The results1 showed mean patient ratings of quality of care were higher regarding physicians than nurses (4.39 vs 4.24; P = .01). Mean patient ratings of satisfaction with physicians were also higher, but not significantly (4.53 vs 4.43; P = .32). In analysis of variance models, patient ratings of physician quality were lowest for patients with do-not-resuscitate orders who were treated by a house-staff service compared with other patients (P = .01). These patients were also least satisfied with their physicians (P = .03). Non-depressed patients with private attending physicians rated nursing quality the highest (P = .16). These patients also reported the highest satisfaction with nurses (P = .002). Quality and satisfaction were not related to severity of illness, and pain was only weakly associated with satisfaction with physicians.

Their study found that patients with do-not-resuscitate orders who were treated by a house-staff service gave the lowest ratings of physician quality and satisfaction. Only private patients who were not depressed were highly satisfied with their nursing care.

Patients’ Spiritual Needs, Family Members’ Stresses Need More Attention

Physicians need to pay increased attention to patients’ spiritual needs as well as to obtaining advance directives and better pain control, Sulmasy says, but the major piece of advice he gives to clinicians is that they need to recognize the stresses that occur for the family members and surrogates who actually make the end-of-life decisions.

Acknowledging that stress is by far the best way to begin a conversation with a family member, says Sulmasy, who is currently engaged in studying stress levels in surrogate decision-makers. "There’s been so much emphasis on patient autonomy that we tend to forget that most of these patients are no longer autonomous. We need to pay more attention to them."

Sulmasy says that patients’ higher levels of satisfaction with physicians may be attributable to the fact that though nurses’ patient contacts add up to more time spent overall, the elapsed time in each contact is far less than the time physicians spend. He adds that results from an earlier study showed that the average time a nurse spends (averaged from patients with high APACHE scores both in and outside of ICUs) with patients close to the end of life is 2 minutes. "All told, nurses spend 90 minutes per in the room with each patient per 24 hours," Sulmasy says. "But the average (dying) patient spends 18 hours of each 24 alone."

Many patients emphasize the interpersonal aspects of care more than the care itself, Sulmasy says. "Competency was part of their concerns, but the greater part was how they felt treated, whether they felt there was a connection between them and their caregivers and if they felt respected, cared for and honored," he observes.

Satisfaction Levels Differ for Patients and Family Members

Interestingly, Sulmasy’s research shows that levels of satisfaction of patients and their families differ randomly and go in both directions, though family members consistently overestimate patients’ pain levels. "I expect part of the reason is that their experiences are different," Sulmasy notes. He points out that a family member’s experience may be that the doctor didn’t return phone calls while the patient may feel the doctor treated him well. Or a family member has great rapport with the nurse but the patient’s experience is that it takes the nurse too long to arrive when called for. "Both experiences are valid, but family members’ experiences can’t be used to get at what the patient is experiencing," Sulmasy observes.

Sulmasy’s study revealed that patients who survived their DNR orders rated the care they received as lower, a finding that troubles him greatly. "We have not been able to show they get less time from their doctors, but they clearly perceive something (different) going on," he says. Caregivers must look at ways in which they may be giving unintentional signals about patients’ meaning and value after a DNR order is written, Sulmasy stresses. "We also need to find better ways of helping physicians and nurses with their own ways of coping to they don’t reflect their own discomfort to the patients," he says. "Caregivers need better care, too."