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How to Measure the Best in Hospice & Palliative Care

Lindsey, Heather

doi: 10.1097/01.COT.0000465749.13611.c1
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Ten quality indicators identified by the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA) may help patients receive the best possible palliative and end-of-life care, according to the initial recommendations of the organizations' consensus project, Measuring What Matters (MWM), published in the April issue of the Journal of Pain and Symptom Management (2015;49:773-781). The measures were developed so they can be applied to a variety of specialties, but may also have a direct application to oncology.

“We embarked on this project because we recognized a need among patients and their families,” said Joseph D. Rotella, MD, MBA, HMDC, FAAHPM, Co-chair of the MWM Clinical User Panel and AAHPM's Chief Medical Officer. While there are more than a hundred published measures related to palliative and hospice care quality, there is no consistency among programs across the country regarding which measures are being used, he explained. Consequently, making sense of a patient's experience is difficult.

The 10 measures range from an assessment of physical, psychological, social, spiritual, and functional needs, to having patients' treatment preferences followed.

“If we could get programs around the country using some of the same measures, then we could develop benchmarks and best practices,” he said. Using the same quality indicators could also help physicians to more easily share information, which could then lead to the development of the next generation of measures.

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‘Reasonable Starting Point’

Robert M. Taylor, MD, FAAN, FAAHPM, Associate Professor and a pain and palliative medicine physician at Ohio State University Comprehensive Cancer Center—Arthur G James Cancer Hospital and Richard J Solove Research Institute, called the 10 measures a reasonable starting point for assessing palliative and hospice care—“It's a challenge to come up with measurements that matter.”

And while these indicators are a good initial effort, they do have several limitations for measuring palliative care in the oncology setting, noted James T. D'Olimpio, MD, FACP, FAAHPM, Director of Supportive/Palliative Oncology and the Cancer Pain and Symptom Control Service at North Shore University Hospital in New York.

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Consensus Process

For this consensus project, paper authors evaluated 75 scientifically validated measures and determined which 10 would be the most meaningful to patients and their families for managing their palliative and hospice care needs.

Rotella explained that the team looked for indicators that are actionable, meaning that they can be directly assessed and used to improve quality of care. The indicators are also balanced to include pain and symptom management, health care decision-making, and spiritual and emotional needs, and to reflect the National Consensus Project (NCP) Palliative Care Guidelines domains.

The researchers narrowed the list of 75 measures through a modified Delphi rating process. A technical advisory panel judged the strength of the indicators, while a clinical user panel determined which were most clinically relevant.

Overall, the measures are intended to help palliative care and hospice providers systematically evaluate the effectiveness of their programs and to develop strategies to keep improving practice, ensuring that patients and families get the very best care possible across settings, Rotella said.

The authors evaluated “a huge body of work from the past 30 years and found the measures that make the most sense and have the most meaning in the context of clinical care,” said Charles von Gunten, MD, Vice President of Hospice and Palliative Care at OhioHealth. “They synthesized what can be used in routine practice.”

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Applications to Oncology

While the study is a good first step toward developing indicators for palliative and hospice care, the general measures may be challenging to apply to oncology, D'Olimpio said. Palliative and hospice care need to be integrated into each area of medicine—approaches for oncology patients may be much different from those for congestive heart failure (CHF) or chronic obstructive pulmonary disease (COPD) patients, for example.

Patients with cancer have a more rapid trajectory of decline toward the last few months of life than those with CHF or COPD, which tend to be associated with a series of losses of function, he added. Ultimately, each medical specialty will likely have its own comprehensive set of palliative and hospice care indicators.

The set of initial 75 measures included some that were specific to cancer patients—for example, those endorsed by ASCO in its Quality Oncology Practice Initiative, Rotella noted. However, when narrowing the 75 to 10, “we had to choose measures that could be used more broadly. I agree that oncologists might want to have certain measures focused just on cancer patients, and many of those measure exist and are used in quality programs.”

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Another limitation, D'Olimpio said, was that early referrals and outpatient palliative care management were not thoroughly addressed in this paper.

The authors did not discuss at length the clinical limitations of the measures, “and we're not at the point where we can take this information and apply it to outpatient practice,” he said. The lack of outpatient quality metrics is the next big challenge in palliative care.

Rotella said that that many of the 10 measures can be applied to oncology patients, whether they are receiving palliative care in the outpatient setting, concurrently with other treatments that have the potential of cure, or at the end of life. For example, measure #2, screening for pain, shortness of breath, nausea, and constipation can be done across all points of cancer care.

Von Gunten agreed: “The measures are applicable all the way through cancer care,” and distinctions between outpatient palliative and end-of-life hospice care don't make sense clinically when using these measures for oncology patients, he said. “Everyone who walks into an oncologist's office has needs in the physical—like pain—spiritual, practical and psychological domains—and that's what these measures assess.”

And while the indicators will be refined over time, using them immediately could help move cancer care forward, he added: “They match what patients and families tell us they're looking for in cancer care. Comprehensive cancer care is about the person and his or her family and not just the cancer. These measures help to capture this principle.”

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CHARLES VON GUNTEN, MD

CHARLES VON GUNTEN, MD

Additionally, said Eduardo Bruera, MD, FAAHPM, Founder, Department Chair, and Professor of Palliative Care and Rehabilitation Medicine at the University of Texas MD Anderson Cancer Center, the indicators help in personalizing palliative care for oncology patients: “We have developed exquisite genomic tools for the personalized care of a tumor. These measures are an attempt at personalizing the care of the patient who brings that tumor to the cancer center.”

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Operational Concerns

Bruera said that while it makes sense to document palliative care because it ensures that you are caring for patients according to their wishes, there is still the question of how to operationalize this process: “Do you have a way to score some factors of care as more important than others, or to rate an institution based on the presence of having all or some of these indicators present?”

EDUARDO BRUERA, MD, FAAHPM

EDUARDO BRUERA, MD, FAAHPM

Some of the measures could be established as threshold items that institutions would need to implement to be considered compliant, he said. “Regrettably, we still do not have a lot of research on many of these items.” However, from a patient and family perspective, discussion, screening and treatment of physical symptoms, and addressing psychological needs are the most relevant to managing suffering at the end of life, he added.

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Next Steps

The next step of the MWM project is to have providers of palliative and hospice care, no matter what setting, to apply two or three of the existing measures to their quality improvement programs. “We want them to experience trying them out and sharing what's working and what's not,” Rotella said.

He recommends that the measures be used just as they were designed. For example, half of the MWM measures come from the PEACE (“Prepare, Embrace, Attend, Communicate, Empower”) hospice and palliative care quality measure set; helpful tools and resources for those measures are available online at www.med.unc.edu/pcare/resources.

Using even just a few indicators can help institutions compare “apples to apples, rather than apples to oranges,” Taylor noted.

Rotella said that another future goal for the MWM group is to develop a way to identify patients who would benefit from palliative or hospice care. Many patients are not referred to this form of care or are referred for only a short amount of time before they die.

Additionally, the researchers found no appropriate measures for the important cultural and social domains of care, indicating another gap that needs to be addressed, he said. “Ultimately, we want to be sure that patients get the care that matters the most and that provides the best quality of life.”

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The 10 Palliative & Hospice CareMeasures of Quality

  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 admission;
  3. Seriously ill palliative care and hospice patients who screen positive for at least moderate pain receive treatment 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; and
  10. Palliative care and hospice patients or their families are asked about their experience of care using a relevant survey.
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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