Accountability has been called the third revolution in medical care (1). Healthcare providers are now often faced with new questions. For example, what are the outcomes of palliative care that justify its continued institutional support? Or, what is the evidence for the use of a certain medical intervention for a specific patient? Fundamental to answering these questions are defining quality of care for seriously ill patients and determining how care is measured.
Quality care at the end of life is different than during any other period of time. Dying persons, their families, and healthcare providers are often faced with decisions that involve tradeoffs between length of life and quality of life. Reasonable persons may differ in such decisions. Therefore, preferences and values are important to shaping treatment decisions in ways unlike other time periods. Outcomes assessment for the dying must take this into consideration. In this chapter, a practical approach to examining outcomes, whether it is part of an audit prior to quality improvement efforts or for the ongoing assessment of institutional quality of care, will be discussed.
WHY EXAMINE OUTCOME?
The first response of staff to auditing the quality of care is, “Why?” A typical response is that their work cannot be measured. Yet, audits and ongoing quality monitoring through examining administrative data, reviewing medical records, and/or speaking with dying persons and families lead to important opportunities to improve the quality of care. Simply stated, “If you don’t measure it, you won’t improve it” (2).
The results of assessing the outcomes of palliative medicine can help create the needed attention to the issue of improving the quality of care. Such tension can create the awareness among healthcare providers of opportunities to improve and enhance their current practices. Examining the outcomes can be critical to detecting early problems with new medications or other unintended consequences from medical interventions. Examining outcomes can guide organizational efforts to improve the quality of care. For example, knowing that one in four persons now die in a nursing home provides important information for the planning of new programs to meet the needs of the dying (3).
WHAT OUTCOMES TO MEASURE?
Reflecting on the thirtieth anniversary of St. Christopher’s Hospice, Dame Cicely Saunders said, “We have never lost sight of the values that were so important to David: commitment to openness, openness to challenge, and the absolute priority of patients’ own views on what they need” (4). Fundamental to palliative care is meeting the needs and expectations of patients and families. Quality in a 42-year-old with an acute myocardial infarction can be measured by whether interventions have been done that minimize infarct size such as the use of aspirin or percutaneous transluminal angioplasty. The vast majority of persons would want efforts to focus on restoring function under these circumstances. On the other hand, the circumstances of a 42-year-old dying of stage IV lung cancer are quite different. Technological interventions require weighting of their impact on both quality and quantity of life—decisions that require the input of an informed patient.
The importance of preferences is reflected in the Institute of Medicine’s (IOM) definition of quality of care: the “degree to which health services for individuals and populations increased the likelihood of desired health outcomes and are consistent with professional knowledge” (5). This definition implies that conceptual models for quality care (as well as instruments measuring quality) must be based on both professional knowledge and informed patient preferences. To date, most conceptual models have been built either around expert opinion or qualitative data from patients, families, or healthcare providers.
Fortunately, both experts and consumers agree in many ways about what is important for the end-of-life care— physical comfort, emotional support, and autonomy. However, they have significant areas of disagreement as well, for example, unmet needs (Table 67.1). Family members want more information on what to expect and how they can help their dying loved ones. Patients and families emphasize the importance of closure at the end of life, including issues of personal relationships. Families often speak of frustration with a lack of coordination of medical care. It is often not clear who is in charge; different healthcare providers provide conflicting information, and transitions can be fraught with confusion (10).
One conceptual model, patient-focused, family-centered medical care (Table 67.1), is based on a review of existing professional guidelines and results from focus groups conducted with bereaved family members (10,11). According to this model, institutions and care providers striving to achieve patient-focused, family-centered medical care for the seriously ill patient should:
TABLE 67.1 Comparison of domains of expert, patients, family members, healthcare providers, and proposed combined model in measuring quality of care at the end of life
Providing desired level of physical comfort and emotional support
Psychological and cognitive symptoms
Physical well-being and functioning
Self-determined life closure
Avoiding inappropriate prolongation of the dying
Clear decision making
Achieving control over healthcare decisions and everyday decisions
Promote shared decision making
Social relationships and support
Psychosocial well-being and functioning
Effective grieving
Achieving sense of control
Preparation for death
Burden of advocating for quality medical care
Focus on the individual which includes closure, respect, and dignity of the patient
Economic demands and caregiving demands
Family well-being and perceptions
Relieving burden
Completion
Educating on what to expect and increasing confidence in providing care
Attend to the needs of the family for information, increasing their confidence in helping with patient care and providing emotional support prior to and after the patient’s death
Hopes and expectations
Strengthening relationship
Contributing to others
Emotional support prior to and after the patient’s death
Coordination and continuity of care
Spiritual and existential beliefs
Affirmation of the whole person
Informing and educating
Nelson EC, Splaine ME, Batalden PB, et al. Building measurement and data collection into medical practice. Ann Intern Med. 1998;128:460-466.
provide the desired level of physical comfort and emotional support;
promote shared decision making, including care planning in advance;
focus on the individual patient by facilitating situations in which patients achieve their desired levels of control, staff members treat patients with respect and dignity, and patients are aided in achieving their desired levels of closure;
attend to the needs of caregivers for information and skills in providing care for the patient and provide emotional support to the family before and after the patient’s death; and
coordinate patients across disease trajectory, healthcare providers, and settings of care.
On the basis of this model, a survey intended to be used as part of an initial quality audit of the quality of end-of-life care has been developed and validated. Two surveys have been created including the Consumer Assessment and Reports of End of life Care (CARE) that was used in national mortality followback survey (12). This survey was shortened to create the Brown University Family Evaluation of Hospice Care and has been adopted by National Hospice and Palliative Care Organization with a recent study of “early adopter hospices” showing variation suggesting discriminant validity (13).
WHEN ARE OUTCOMES MEASURED?
The question of when outcomes are measured is an extremely important consideration. Dying is unlike any other period of time. Often, the dying person and her healthcare providers are balancing the hope for longevity versus the need to make appropriate preparation. Although many outcome measures are not clearly linked to disease trajectory and patient readiness, several outcomes are linked to either. For example, issues around closure are clearly linked to the dying person and family readiness to discuss that the patient is dying. Therefore, the wording of questions and timing of administration of survey must be done in a sensitive manner to reflect where the dying person is in their readiness to discuss existential issues. Other process measures, such as counseling on advance directives or discussion of hospice, should reflect the recommendation of professional guidelines with measures of quality of care to include counterbalancing measures about whether such discussions were done in a sensitive and compassionate manner.
TABLE 67.2 Purposes of quality measures
1.
Quality improvement—measures to provide information for healthcare institutions to reform or shape how care is provided
2.
Clinical assessment—measures to guide individual patient management
3.
Research—measures that assess the phenomenon of interest
4.
Accountability—measures that allow comparison of quality of care for the purposes of quality assurance or for consumer choice between healthcare institutions or practitioners
From Teno JM, Byock I, Field MJ. Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness. White paper from the conference on Excellent Care at the End of Life through Fast-Tracking Audit, Standards, and Teamwork (EXCELFAST), September 28-30, 1997. J Pain Symptom Manage. 1999;17:75-82.
Only gold members can continue reading. Log In or Register to continue
