In Palliative Care, These 10 Factors Matter Most

February 27, 2015 Updated: February 26, 2015

Patients with serious and life-threatening illnesses are less likely to experience unnecessary physical and emotional suffering if they receive palliative or hospice care that meets 10 key quality indicators.

Palliative care aims to improve quality of life for patients who are being treated for a serious illness by managing pain and other symptoms. Hospice is a specific type of palliative care for patients in their last year of life.

“We identified the best available set of measures to help us evaluate whether we are delivering the very highest quality care to patients who have palliative care needs and their families,” says Sally Norton, associate professor in nursing and palliative care at the University of Rochester.

10 Measures That Matter

The measures below come from a larger group of 75 indicators that were based on what’s most important to patients and families.

1. Palliative care and hospice patients receive a comprehensive assessment (physical, psychological, social, spiritual, and functional) soon after admission.

2. Seriously ill palliative care and hospice patients are screened for pain, shortness of breath, nausea, and constipation during the admission visit.

3. Seriously ill palliative care and hospice patients who screen positive for at least moderate pain receive treatment (medication or other) within 24 hours.

4. Patients with advanced or life-threatening illness are screened for shortness of breath and, if positive to at least a moderate degree, have a plan to manage it.

5. Seriously ill palliative care and hospice patients have a documented discussion regarding emotional needs.

6. Hospice patients have a documented discussion of spiritual concerns or preference not to discuss them.

7. Seriously ill palliative care and hospice patients have documentation of the surrogate decision-maker’s name (such as the person who has health care power of attorney) and contact information, or absence of a surrogate.

8. Seriously ill palliative care and hospice patients have documentation of their preferences for life-sustaining treatments.

9. Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments have their preferences followed.

10. Palliative care and hospice patients or their families are asked about their experience of care using a relevant survey.

Project leaders also identified a number of other actions that need to be taken to ensure quality care, including developing a method for identifying all patients who could benefit from palliative and hospice care; potentially setting up a registry of palliative and hospice care and working toward developing best practices; creating other needed measures, such as those to gauge social and cultural aspects of care; and developing a patient or family experience survey that is valid in all settings.

Health Care Benchmarks

The goal of the Measuring What Matters project was to select a set of measures that are scientifically rigorous and that all palliative care clinicians should use to ensure they are providing the highest quality care.

Researchers say this could eventually create health care benchmarks—currently there is no consistency regarding which measures are required by various groups, such as accrediting organizations to payers.

As the U.S. population ages, and the demand for this type of care grows, the ability to assess quality throughout the country and across care settings is increasingly important, researchers say.

For the study, published online in the Journal of Pain and Symptom Management, researchers chose scientifically rigorous measures that meet three criteria: They are meaningful for patients and their families, are able to be implemented by providers, and can significantly improve the level of care.

The team also collected input from patients, families, providers of palliative and hospice care, doctors and nurses, social workers, and grief counselors.

“As a researcher, it is promising to me because this portfolio of measures will help us build the ‘science’ of palliative care, which is still young,” Norton says.

“But much more importantly, we wanted to pinpoint the measures most meaningful to patients and families, and give providers tools they can use to systematically evaluate effectiveness, develop strategies to keep improving, and ensure that patients and families get the very best care possible.”

The panel also hopes that the focus on quality improvement will lead to more people receiving this important care. There are even greater numbers of people being treated for serious illnesses who would benefit from palliative care, but aren’t aware this type of care is available to help relieve symptoms, support their families, and improve their quality of life.

Norton collaborated with David J. Casarett, director of palliative care at University of Pennsylvania Health System.

From University of Rochester via