Surprisingly, many people do not know what palliative care is despite its great strides in recent years. A Consumer Reports survey of more than 2,000 adults, for example, showed that 61 percent had never heard of palliative care.
As the population ages and the demand for palliative care grows, the ability to assess quality throughout the country and across care settings is increasingly important, as Dr. Joseph Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM) and co-chair of its Measuring What Matters Clinical User Panel explained. And because there has been “no consistency regarding which measures are required by various groups, from accrediting organizations to payers,” AAHPM and the Hospice and Palliative Nurses Association (HPNA) came up with “measuring what matters” quality indicators.
Moreover, he said, “there has not been enough focus on cultural sensitivity and social supports. The quality indicators represent a small set of measures to use right now in hospice and palliative care because they are meaningful to patients and have a real impact on them.”
These measures are not mandatory. But if you are seriously ill, or taking care of someone who is, this is the kind of care you should look for. The measures call for:
- A comprehensive assessment (physical, psychological, social, spiritual and functional) soon after admission.
- Screening for pain, shortness of breath, nausea and constipation during the admission visit.
- If you screen positive for at least moderate pain, you should receive treatment (medication or other) within 24 hours.
- Patients with advanced or life-threatening illness should be screened for shortness of breath and, if positive, to at least a moderate degree, have a plan to manage it.
- Engaging in a documented discussion regarding emotional needs.
- Hospice patients should have a documented discussion of spiritual concerns or preference not to discuss them.
- 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.
- Documentation of your preferences for life-sustaining treatments.
- Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments should have their preferences followed.
- You or your family or your caregivers should be asked about your experience of care using a relevant survey.