New Tool Measures Caregivers’ Perception of End-of-Life Care

Those who care for terminally ill and dying individuals will go through a range of experiences including nursing care, arrangements for death, end of life events, death, and grief. The quality of an individual’s end-of-life (EOL) experience can be measured in various systems and has been useful in helping caregivers assist people progress through these stages. But until now, no measure has looked at the caregiver’s perception of the suffering that a patient experiences of how prolonging death with life sustaining method is perceived by the caregiver.

Because the emotional reaction of a caregiver influences not only the quality of care to the patient, but also the emotional distress and comfort of the patient as they prepare to die, it is important to understand how caregivers view these factors. Also, the way in which a caregiver perceives the death of the patient in their charge can dramatically affect how they cope with the passing of that individual and how they handle bereavement and grief.

To get an idea of how caregivers view these important EOL elements, Philip C. Higgins of the Boston College Graduate School of Social Work in Massachusetts recently developed and tested a new scale called the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL). The scale evaluated several different dimensions of caregiving and quality of EOL care for 275 sets of caregivers and their cancer patients. The caregivers completed the assessments both prior to and after the deaths of their patients.

Higgins found that four distinct elements were reported as being significant to the quality of EOL care, including caregiver’s perception of patient suffering, death preparation, the prolonging of death, and sharing in the decision-making process. One of the most unexpected findings was that the majority of caregivers reported higher levels of patient suffering than anticipated. If caregivers believe their patients are suffering to a great degree, especially as the result of life-sustaining measures, then the likelihood of distress and posttraumatic stress (PTSD) after the patient’s death increases.

Higgins also found that high scores on the CEQUEL predicted a high level of therapeutic alliance and hospice involvement and also decreased the likelihood of regret and PTSD. In sum, Higgins believes that the CEQUEL is an effective way to measure caregivers’ perception of EOL. He added, “If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.”

Higgins, P.C., Prigerson, H.G. (2013). Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver’s perception of patient care near death. PLoS ONE 8(6): e66066. doi:10.1371/journal.pone.0066066

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  • alyssa


    June 17th, 2013 at 10:42 AM

    I have seen a whole lot of caregivers just about reach their breaking point because many of them don’t feel like they have the help that they need to make end of life a better experience for their patient.

  • Paul


    June 18th, 2013 at 4:29 AM

    A good caregiver is only going to want what is best for the patient. I don’t think that most of them are able to turn a blind eye to the suffering that many are going through and I think that most will want to do what they can to make this experience a little easier for the patient as well as the family. It doesn’t even have to be that this person is family. Sometimes I think that an outsider could be a little more objective and would be a good person to listen to when the family is soliciting advice about the best things that can be done for the patient. The caregiver can be a great source of knowledge and comfort for the family.

  • Philip C. Higgins

    Philip C. Higgins

    June 18th, 2013 at 10:46 AM

    Thanks for posting about our research, we’re excited to contribute to the literature on the vital role of the caregiver at EOL, and in particular the ways in which perceived suffering and prolonged dying impact EOL care and bereavement.

    I want to make sure readers are clear that CEQUEL defines “caregiver” as the person providing the majority of a patient’s unpaid, informal care. In other words, these caregivers are patients’ friends and family members, not their health care providers. This is an important distinction as we look at the caregiver’s role at EOL as well as adjustment in bereavement.

    Thanks again for sharing!

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