Critical care professionals will care for a large number of dying patients throughout their careers. Many studies raise concerns about the frequency of pain and distressing symptoms at the end of life.(1,2) Efforts to address this situation through quality improvement methodology are growing. Important goals of researchers, administrators and clinicians have included the development and validation of measures of the “quality of dying,” studies to understand how the provision of appropriate palliative care will impact intensive care unit (ICU) metrics, and educational efforts to improve the care of ICU patients whether or not palliative care specialists are available.
Deciding how to measure quality of care involves the difficult task of choosing metrics that are reliable and feasible to collect and that measure important outcomes or processes. The American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Medicine Nurses Association launched the consensus project “Measuring What Matters” to develop quality metrics for hospice and palliative care.(3) Their “top 10” metrics were not intended specifically for use in the ICU, but many are clearly relevant to ICU care:
1. Comprehensive assessment for every patient
2. Physical symptom screening
3. Pain treatment
4. Dyspnea screening and management
5. Discussion of emotional and psychological needs
6. Discussion of spiritual/religious concerns
7. Documentation of surrogate decision-maker
8. Documentation of treatment preferences
9. Care consistent with documented preferences
10. Patient/family satisfaction with care
While many of these metrics focus on documentation, tracking documentation may help ensure that appropriate care is being provided. Quality improvement efforts in an ICU could track similar metrics in patients who have a high probability of dying. The Palliative Care Quality Network Quality Improvement Collaborative (www.pcqn.org
) is another example of using shared best practices and rapid cycle improvement to enhance care.
Other efforts have focused on the development of validated tools to measure quality in end-of-life care.(4) These tools are most often used in the research setting. One of the most frequently used in the Quality of Dying and Death Questionnaire.(5) Other examples include the Good Death Scale and the Good Death Inventory. Research in this area is challenging because it can be difficult to define “dying” and because assessment time frames have varied from hours to days to weeks among different studies. It is also difficult to incorporate subjective data from patients, and most tools collect retrospective information from family members or healthcare providers. Another challenge is that such tools cannot account for individual variability in end-of-life preferences. A “good” death for one patient could mean a focus on comfort and being at home, while for another patient (or family), it could mean fighting until the end with every invasive procedure imaginable in the ICU. Many tools presume that comfort is the primary goal. While this may be the case for most, it may not be true for all, especially when the outcome of the illness is not yet known.
Research has also focused on the impact of palliative care consultation in the ICU. One medical ICU pre/post intervention trial assessed the impact of proactive palliative care consultation on patient outcomes.(6) Patients either had ICU hospitalization for more than 10 days, age older than 80 years with multiple comorbidities, stage IV malignancy, post-cardiac arrest status, or both intracranial hemorrhage and respiratory failure. The study showed a significant reduction in ICU length of stay (8.9 vs. 16.3 days, p
=0.0001), with no increase in mortality. Spurred by mandates of the Affordable Care Act,(7) other studies have focused on whether hospice or palliative care can reduce hospital and ICU readmissions.(8)
The Society of Critical Care Medicine has been closely involved in efforts to improve palliative care in the ICU. Palliative care can be broadly defined as care focused on improving the quality of life of both patients and families. “Primary” palliative care can be provided by ICU staff on an ongoing basis, either before involving subspecialty consultants or in areas in which palliative care specialists are not available.(9) Efforts to improve communication and supportive care for all ICU patients(10, 11) will inevitably benefit those at the end of life as well. The Improving Palliative Care in the ICU project (www.capc.org/ipal/ipal-icu
) is an endeavor funded by the National Institutes of Health that provides templates, protocols, quality monitoring tools, journal articles and courses that relate to palliative care in the ICU.
As quality improvement science continues to grow, it will also be important to ensure that metrics used to benchmark ICUs do not have an adverse impact on the quality of care provided to patients at the end of life. A theoretical example is a rushed transfer of an imminently dying patient out of an ICU in order to shift the location of mortality, when the patient might have benefited from consistent ongoing care. What we choose to measure can have enormous benefit, but we must be vigilant to prevent unintended consequences from efforts to manipulate the system. Also, we hope that what we choose to measure can help us find the right balance of providing life-saving technology when it is useful and appropriate to do so, and providing comfort and peace when it is the right time.
1. [No authors listed.] A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA. 1995 Nov 22-29;274(20):1591-1598.
2. Lynn J, Teno JM, Phillips RS, et al. Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Ann Intern Med. 1997 Jan 15;126(2):97-106.
3. Dy SM, Kiley KB, Ast K, et al. Measuring what matters: top-ranked quality indicators for hospice and palliative care from the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association. J Pain Symptom Manage. 2015 Apr;49(4):773-781.
4. Hales S, Zimmermann C, Rodin G. Review: the quality of dying and death: a systematic review of measures. Palliat Med. 2010 Mar;24(2):127-144.
5. Downey L, Curtis JR, Lafferty WE, Herting JR, Engelberg RA. The Quality of Dying and Death Questionnaire (QODD): empirical domains and theoretical perspectives. J Pain Symptom Manage. 2010 Jan;39(1):9-22.
6. Norton, SA, Hogan LA, Holloway RG, Temkin-Greener H, Buckley MJ, Quill TE. Proactive palliative care in the medical intensive care unit: effects on length of stay for selected high-risk patients. Crit Care Med. 2007 Jun;35(6):1530-1535.
7. Kocher RP, Adashi EY. Hospital readmissions and the Affordable Care Act: paying for coordinated quality care. JAMA. 2011 Oct 26;306(16):1794-1795.
8. Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: a randomized control trial. J Palliat Med. 2008 Mar;11(2):180-190.
9. Penrod JD, Pronovost PJ, Livote EE, et al. Meeting standards of high-quality intensive care unit palliative care: clinical performance and predictors. Crit Care Med. 2012 Apr;40(4):1105-1112.
10. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007 Feb;35(2):605-622.
11. Nelson JE, Mulkerin CM, Adams LL, Pronovost PJ. Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback. Qual Saf Health Care. 2006 Aug;15(4): p. 264-271.