Promising Quality Care at the End-of-Life
Introduction
Living longer does not necessarily mean dying better. Many of us have witnessed in our family members and friends poor quality of care at life’s end. As noted by Lynn (2001), the humane and compassionate care we expect at the end-of-life may not be there when we need it. Poor quality end-of-life care has been documented for all types of care settings. Patients in acute care settings may be subjected to futile resuscitation efforts and may experience unrelieved pain, dyspnea and intolerable emotional symptoms in the last three days of life (SUPPORT Investigators, 1997).
Patients in the home setting experience severe unrelieved pain and their families may experience stress and deterioration in health from the burden of informal care-provision (Hinton, 1994). Residents in long term care facilities also experience unrelieved pain (Bernabei, Gambassi, Lapane, et al, 1998), may not receive the emotional support and counseling required to face life’s end (Black & Bowman, 1997), and less than 1% will have access to specialist interdisciplinary palliative care providers (Carstairs, 2000).
Consequently, improvement in the quality of end-of-life care has become a priority health care issue for all care settings. Health care system reform is needed if we are to improve end-of-life care quality and if we are to promise more humane and compassionate care to our patients and their families. This paper describes what constitutes quality end-of-life care and provides direction to health care organizations on the actions that can be taken to reform delivery systems to improve quality care at the end-of-life.
The Dying Elderly
As the population ages, studies show that more people will be debilitated by chronic and terminal illness (Luddington, Cox, Higginson, Livesley, 2001). The age-specific mortality from all causes rises steadily with increasing age with age-specific mortality from all causes noted to be over 10% annually (Statistics Canada, 2001). The number of cancer deaths is also expected to rise as the population ages with predicted prevalence of cancer in one in three Canadians over the age of 65 by the year 2010 (CCS, 2000). Although dying is not specifically reserved for the elderly, 82% of deaths from cancer occur in those 60 years of age and older.
Dying persons are a vulnerable population with multifaceted and often complex health care needs. End-of-life care for the elderly may be particularly complex since they die from a multiplicity of diseases, such as cancer, congestive heart failure, chronic obstructive lung disease, Alzheimer’s often in combination (Fisher, Ross, Maclean, 2000; Howell, 2003), and may be more disabled than those dying at younger ages (Guralinick, LaCroix, Branch, et al., 1991). Death from non-malignant terminal diseases may also be more common in the elderly with episodic symptom management needs requiring palliative interventions over longer periods of time to prevent prolonged suffering (Lynn, 2001). The application of palliative care modalities for those dying of non-malignant diseases is less developed and commonly used approaches to symptom management may require more skilled application in the elderly with additional core knowledge required, such as assessing and treating pain in the cognitively impaired. Disease factors in this population may be compounded by sociodemographic factors, such as frailty, living alone, elderly spousal caregivers (Bruera, Kuehn, Emery, et al. (1990) and attitudinal factors, such as fear of the use of opioids and differential treatment access (Fisher, et al, 2000).
As noted by Fahey and colleagues (2003) the overall standard of care was found to be inadequate in a population of elderly patients across health care settings when judged against quality indicators. Fahey noted evidence of insufficient use of beneficial drugs, poor monitoring of chronic disease, and overuse of inappropriate or unnecessary drugs. Overall access to palliative care resources may be less accessible to the elderly, since providers anecdotally report that resources are preferentially allocated to younger populations. The quality of living and dying for seniors must be an integral component of all care delivery systems with palliative care approaches comprehensively utilized throughout the trajectory of progressive advanced cancer and chronic illnesses and not withheld until only the final days of life.
Defining Quality End-of-Life Care
In order to improve the quality of dying their needs to be a common understanding of what constitutes quality end-of-life care so that providers and health care organizations are clear on the areas on which to focus their efforts. The Institute of Medicine (1999) defined high quality dying as a death “free from avoidable distress and suffering for patients, families, and their caregivers; in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards”. Numerous researchers and professional societies have developed taxonomies delineating the domains of quality end-of-life care, which are depicted in Table 1.
In summary, patients and families expect that a quality dying experience will ensure that optimal functioning is supported, pain and symptoms are controlled, that they will be assisted to prepare for death emotionally and spiritually, will die in the place of their choice with loved ones present, will have the opportunity for sustained relationships with family and friends, their treatment preferences will be assessed and respected, and that providers will address them as whole persons supporting their dignity, sense of meaning and purpose (Patrick, Engelberg, Curtis, 2001). Reforms within the health care system are necessary to ensure these quality domains are appropriately addressed.
Reforming Care Systems
Reforming care systems to improve end-of-life care quality cannot be addressed through a single, confined approach or solution, but rather must be addressed at all levels of the health care system. As noted by Ferlie and Shortell (2001), a comprehensive multilevel approach to changing the quality of care must focus on actions directed at four levels of the health care system: (1) individual providers; (2) teams; (3) organization; and the (4) larger system/environment. More importantly, these authors note that a multilevel approach to change must include recognition of the importance of four essential core properties of successful quality improvement work: (1) leadership at all levels; (2) a pervasive culture that supports learning throughout the care process; (3) an emphasis on the development of effective teams; and (4) greater use of information technologies for both continuous improvement work and external accountability. The key actions that can be taken by health care organizations in each of these four strategic areas are summarized as follows:
Individual provider reforms
Reforming quality of care at the individual provider level must be directed towards improving the knowledge and skills of providers through effective educational strategies and promoting the adoption of best practices, particularly in areas such as pain and symptom management and end-of-life decision-making that are known to be amenable to care process improvement. Since traditional didactic education and single strategies have been shown to have little effect on promoting practice change, educational approaches should focus on case-based problem solving with clear direction on the practical steps that can be taken to address specific problems (Davis, & Taylor-Vaisey, 1997: Grimshaw, Shirran, Thomas, et al, 2001).
Repetition of practice principles on a frequent basis as part of a continuing education approach is usually most successful (Ferris, von Gunten, Emanuel, 2002). Multifaceted approaches to change that incorporate reminders, the use of those who are respected as having expert authority (opinion leaders) to deliver education, and interventions where patients are instructed on the kind of care that they should receive are successful in the adoption of best practices in and in promoting attitudinal change (Grimshaw, et al, 2001). The implementation of care pathways and user-friendly evidence-based protocols with orderentry systems where feasible have demonstrated improvement in reported levels of symptom relief and response times for the administration of analgesic (Lynn, 2000). Changes in knowledge and skills must be continually reinforced. The Internet can be a source of already developed best practice guidelines, education programs and local resources, such as clinical pharmacists, could assist in the implementation process.
Team level reforms
Interdisciplinary teams offer the best vehicle for meeting the multifaceted, complex needs of dying persons and their families and team delivered care is identified as a practice norm in national palliative care standards (CPCA, 2002). Working in teams is highly valued by providers and results in improved care outcomes (Donaldson & Mohr, 2000). Effective teams are characterized by a shared philosophy and decision-making, flexibility and openness to new ideas, recognition of each member’s contribution to patient care, synergy, skilled communication, problem solving and coordination (Fried, Topping, Rundall, 2000). Effective teams require leadership and support with designated meeting time and training related to effective team function and teams should be specific to the care setting. For instance, in long term care settings, teams should be comprised of all members of the organization, such as health care aides and kitchen staff who could work collaboratively to improve the quality of end-of-life care.
The important contribution of every member of the team should be emphasized and clarity of each team member’s role in delivery quality care reinforced. Team members working together to bring their own disciplinary and humanistic perspective to the processes of care can make significant contributions to the quality of end-of-life experience of patients and their families. Teams who use rapid-cycle quality improvement methods incorporating a PDSA (plan, do, see, act) process have demonstrated dramatic improvements in the relief of symptoms and advanced care planning (Lynn, Schuster, Kabcenell, 2000). Teams that focus on one change at a time, reinforcement of the change, and work in organizations that have an underlying vision and structure for delivering quality end-of-life care will be most successful (Ferlie, et al., 2001).
Organization level reforms
The culture and leadership with an organization are critical to quality change (Institute of Medicine, 2001). An organizational culture that emphasizes continuous quality improvement, change throughout the whole of the organization, is nonpunitive to individual providers and that emphasizes a culture of compassion and humanistic care throughout the disease trajectory and at the end-of-life will be more successful. Adoption of standards of care, staff and patient education programs, a clearly articulated strategic quality improvement vision and a focus on institution wide change, such as adopting pain as a fifth vital sign has been shown to result in care improvement (Marboth & Barnason, 2000).
Timely access to palliative care is one of the most important organizational reforms needed. Palliative care interventions are often withheld until death is imminent resulting in poor symptom control and emotional preparation for death. Basing access to palliative care on prognosis is uncertain and unreliable (Field & Cassel, 1997: Higginson, 2001). For instance, the median predicted survival of a person with chronic obstructive lung disease was predicted to be 6 months on the day before the person died (Lynn, Harrel, Cohn, et al, 1997).
Predicting survival time in the elderly is particularly uncertain since many will be dying from the dwindling deterioration of old age and from advanced, progressive chronic illnesses. The need for palliative care should not be based on any specific medical diagnosis or time frame, but on the persons needs; in particular it depends on illness complexity, severity and the potential for distress (Lynn et al, 2000). It is recommended that palliative care should focus on those who are sick enough to die within a given time frame, such as one year and offer the kinds of services that help these patients to live well until they die (Lynn, 2001).
Asking practitioners if they would be surprised if the patient died in the next 12 months has been shown to increase the number of referrals to palliative care and has shown to be successful in promoting a changed approach to care by physicians with an emphasis on palliative care measures (Lynn, 1999; Johnston, Kutner, Armstrong, 2003). Organizations could integrate many of the principles of palliative care earlier in the disease trajectory emphasizing humanistic, quality living, patient-centered care, the promotion of dignity, attention to the whole person, and a focus on promoting optimal functional and quality of life as part of their culture (Canadian Hospice Palliative Care Association (CPCA), 2002).
Partnerships with palliative care services will allow organizations to bring palliative care expertise to bear on the patient/family experience of the quality of end-of-life care. Local hospice agencies could play an instrumental role in the provision of volunteer based psychosocial support to patient and families allowing for an ongoing presence during the final days and hours of life in resource constrained environments.
Finally, other important areas for organizational reform include provider education on the principles and practice of palliative care and measuring from the patient and families perspective if quality care has been delivered. If organizations lack an information infrastructure to measure the effectiveness of their changes, clinical audit has been found to be a useful method to measure whether improvements in care have occurred (National Council for Hospice and Specialist Palliative Care Services, 1997). Simple easy to administer validated instruments are available for organizations to evaluate the quality of care delivered from the perspective of both patients and/or family members either during care or in the bereavement period (Teno, 2003).
Larger system reform
Larger system reforms emphasize organizational accountability for care incorporating performance measures across organizations and public reporting. The development of Minimum Data Set tools specifically focused on collecting data relevant to palliative care populations combined with clinical palliative care data-bases will be an important step forward in developing performance systems for monitoring the quality of endof- life care (Hirdes, Zimmerman, Hallman, Soucte, 1998). In other areas of health care performance, such Minimum Data Sets have provided data for development and reporting of quality indicators as seen for example in the Ontario Hospital Report for Complex Continuing Care (www.hospitalreport.ca). Clinical quality indicators are valuable tools that can alert organizations to a quality problem and identify areas on which to focus quality improvement efforts.
However, a Canadian comprehensive core system of quality indicators does not exist at present. The development of indicators that stimulate quality improvement within organizations and for external organizational accountability purposes is an important area for further research that will provide a powerful tool in leveraging system-wide quality improvement initiatives (Brooke, McGlynn, Shekelle, 2000). An important first step in the development of outcome indictors for measuring quality end-of-life care will be to establish empirical links between processes and outcomes of care to promote actionability by teams working to improve the delivery of care (Morrison, Siu, Leipzig, Cassel, Meier, 2000).
Prior to the development of indictors for external public accountability and benchmark comparison across organizations, further work needs to be done to address issues related to the heterogeneity of patient populations at the end-of-life and the subsequent development of appropriate risk adjustment methodologies. The development of performance measures for external accountability in end-of-life care will benefit from what has been learned in the development of quality measurement systems in U.S. nursing homes (Mor, Berg, Angelelli, Gifford, Morris, Moore, 2003; Mor, Angelelli, Jones, Roy, Moore, Morris, 2003).
Accreditation standards are another important area for stimulating quality improvement within organizations and for holding organizations accountable for the quality of care delivered. The inclusion of standards related to performance in the area of pain assessment and management is an important step forward in this area. Anecdotal reports of organizations developing actions related to improving their delivery of effective pain management have been widespread in preparation for accreditation using new pain standards.
This initial step in the incorporation of pain standards will pave the way for the incorporation of standards related to the quality of end-of-life care in the future. Further validation of quality indicators and tools for measuring quality at the end-of-life for incorporation in accountability systems and accreditation standards is an important area of focus for further research and development.
Conclusion
Quality end-of-life care is a right of every Canadian (Carstairs, 2000). Quality improvement change must be targeted to four levels of the health care system if widespread change is to occur to ensure quality of care at the end-of-life. A number of actions can be taken by organizations within each of these levels if they are willing to address the existing shortcomings in the quality of end-of-life care.
At the end-of-life we must be able to promise patients that their final days will not be marked by intolerable suffering and that their families will be supported throughout the dying trajectory and into bereavement. We must endeavor to reform the health care system at all levels so that we can promise that humane and compassionate care will be at the core of the system for patients who are facing the end-of-their lives and their families. As poignantly stated by Donaldson and Field (1998), the measure of our response to the quality of care of those who are dying who are the most vulnerable of our health care population is a measure of our humanity as a society.