Patients with serious and life-threatening illnesses may be less likely to experience unnecessary physical and emotional suffering if they receive palliative or hospice care that meets 10 key quality indicators identified by the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA). The findings and recommendations of the organizations' consensus project, Measuring What Matters, were published online in the Journal of Pain and Symptom Management.
Measuring What Matters was launched to ensure palliative and hospice care patients receive the highest quality care by identifying the 10 best existing indicators - measures - to gauge that care. The 10 measures range from a complete assessment (including physical, psychological, social, spiritual and functional needs) to a plan for managing pain and shortness of breath to having patients' treatment preferences followed. They were selected from among 75 indicators largely based on what's most important to patients and families.
Palliative care improves 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.
The goal of the project was to select a set of measures that are scientifically rigorous, and that all palliative and hospice care providers should use to ensure they are giving the highest quality care and to eventually enable benchmarking in the field. Currently there is no consistency regarding which measures are required by various groups, from accrediting organizations to payers. As the 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.
"Patients deserve to get the very best palliative and hospice care, no matter where they live or receive that care, and our goal was to choose the measures that should be used to ensure that's the case," said Joseph D. Rotella, MD, MBA, HMDC, FAAHPM, co-chair of the Measuring What Matters Clinical User Panel and incoming chief medical officer of the AAHPM. "We're hoping this focus on quality improvement also will lead to more people receiving this important care. Currently, fewer than half of people who die receive hospice care - and often only in the last few days or weeks of life. And significantly more people who are being treated for serious illnesses can benefit from palliative care; many of them aren't even aware this care is available to help relieve symptoms, support their families and improve their quality of life."
The Measuring What Matters team 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 included experts in the field and sought to represent input from patients, their families, and providers of palliative and hospice care, from doctors and nurses, to social workers and grief counselors.
"It was essential that the measures be meaningful to patients and families, "said Sally A. Norton, PhD, RN, FPCN, FAAN, member of HPNA, co-chair of the Measuring What Matters project and Independence Foundation Chair of Nursing and Palliative Care at the University of Rochester School of Nursing. "The selected measures allow us to systematically evaluate our effectiveness and develop strategies to keep improving our practice to ensure patients and families get the very best care possible across settings."
The team identified the following top 10 Measures That Matter:
- Palliative care and hospice patients receive a comprehensive assessment (physical, psychological, social, spiritual and functional) soon after admission.
- Seriously ill palliative care and hospice patients are screened for pain, shortness of breath, nausea and constipation during the admission visit.
- Seriously ill palliative care and hospice patients who screen positive for at least moderate pain receive treatment (medication or other) within 24 hours.
- 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.
- Seriously ill palliative care and hospice patients have a documented discussion regarding emotional needs.
- Hospice patients have a documented discussion of spiritual concerns or preference not to discuss them.
- Seriously ill palliative care and hospice patients have documentation of the surrogate decision-maker's name (such as the person who has healthcare power of attorney) and contact information, or absence of a surrogate.
- Seriously ill palliative care and hospice patients have documentation of their preferences for life-sustaining treatments.
- Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments have their preferences followed.
- Palliative care and hospice patients or their families are asked about their experience of care using a relevant survey.
Drs. Rotella and Norton noted the project 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 towards developing best practices; the creation of other needed measures, such as those to gauge social and cultural aspects of care; and development of a patient or family experience survey that is valid in all settings.