This chapter provides an overview of guidelines, their purpose, characteristics, and steps to successfully disseminate and implement them in everyday practice. The goal of this chapter is to encourage the adoption of evidence-based palliative care practices. This challenge requires not only guidelines but also approaches to behavioral change among clinicians, patients, and caregivers, as well as changes in social settings, professional organizations, educational institutions, and regulatory agencies. Specific examples of palliative care guidelines are noted in the text or cited in the Resources section of this chapter.
About Guidelines
Several terms are used to describe consensus statements about clinical practices.
Practice policies are recommendations intended to be applied to populations of patients with a particular condition within a specified medical context. Eddy describes three types of practice policies: standards, options, and guidelines. Standards are considered best practices backed by well-documented research and experience. Failure to follow standards might be a basis for a malpractice claim. Options represent interventions for which outcomes are unknown or for which outcomes are known but patient preferences vary. Guidelines are more flexible than standards and are intended to aid or guide clinical decision making.
The Institute of Medicine defines clinical practice guidelines as “systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances”. Guidelines are intended as aids, and deviations are common and in many cases appropriate. The quality of the underlying evidence varies, and systems for rating the strength of evidence have been codified by the Canadian Taskforce on the Periodic Health Examination and the U.S. Preventive Services Taskforce. Well-formulated guidelines have an explicit description and evaluation of the evidence used, the potential benefits and harms, and the resulting grade of recommendations made. Additional terms, such as clinical practice guidelines, protocols, clinical pathways, critical pathways, care maps, clinical algorithms, and similar terms are generally used synonymously. The balance of this chapter employs clinical guidelines, or guidelines, for short.
Guidelines have multiple applications, depending on the user (e.g., clinicians, educators, quality-of-care evaluators, patients, policy makers, payers, and others) and on how they are designed. Clinical guidelines may introduce recent innovations into clinical practice, suggest recommendations for education programs, outline methods for evaluating practices, and provide a basis for pay-for-performance initiatives. They may also aid patients and consumer groups to better understand medical decision making, inform policy makers to help set research agendas, and identify best practices for payers and regulators to reduce unnecessary and cost-inefficient practices. Over the past 2 decades, the number of clinical practice guidelines in general and those for palliative care in particular have proliferated exponentially. They are usually available via the internet in comprehensive databases (see Resources section at the end of this chapter).
Ideal guidelines should be user friendly, evidence based, and identify key decision points along with the possible benefits and burdens of options at those decision points.
Barriers to Guideline Use
The quality, applicability, and utility of individual guidelines vary considerably. Furthermore, it can be daunting for practicing community clinicians to sort through the literature to assess the quality of evidence and the strength of recommendations to guide decision making in individual clinical circumstances.
Another challenge facing guideline writers and other stakeholders (clinicians, patients, families, administrators, payers, etc.) with an interest in improving the quality of palliative care is the difficulty of getting guidelines adopted within a particular care delivery system. Clinicians, patients, and families may be resistant to recommendations, and the community context of the practice may also influence treatment decisions. Thus, the ease with which recommendations can be integrated into the existing clinical care settings and the likelihood of their acceptance by both physicians and the communities they serve directly affects the probability that the intended beneficial outcomes of the guideline will be realized.
Finally, the relative dearth of hospital-based palliative care specialists, particularly in smaller community hospitals or rural settings, is another limiting factor to improving access to quality palliative care.
Status of Guidelines in Palliative Care
Professional Consensus about the Importance of Quality Palliative and End-of-Life Care
Over the past decade, palliative care has gained wide acceptance as a quality standard for all care settings in which serious, life-threatening conditions are treated. Fourteen national specialty societies and the Joint Commission (formerly the Joint Commission on the Accreditation of Healthcare Organizations) have adopted recommendations and policies that embrace the core principles of palliative care. Palliative care is now a recognized subspecialty with a well-defined set of practice standards.
In 2005, the American College of Surgeons (ACS) Committee on Ethics developed and approved its principles of palliative care, which includes patients at all stages of disease, in a “Statement on Principles of Palliative Care” (available at www.facs.org/fellows_info/statements/st-50.html ). The Accreditation Council for Graduate Medical Education (ACGME) began certifying fellowship training programs in palliative medicine in 2007, and in 2008 the American Board of Medical Specialties (ABMS) began offering subspecialty certification in hospice and palliative medicine.
Related efforts are underway to ensure that palliative care is provided in intensive care units, where 22% of all deaths in the United States occur during or after admission.
One of the largest representative efforts to codify practice guidelines for palliative care was the National Consensus Project for Quality Palliative Care (see Resources section in this chapter). Its guidelines were developed and agreed upon by five major palliative care organizations in the United States: the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, Last Acts Partnership, and the National Hospice and Palliative Care Organization. It referred to prior efforts of the Institute of Medicine reports ( Approaching Death , When Children Die , and Crossing the Quality Chasm ), the American Association of Colleges of Nursing report Peaceful Death , the National Hospice Work Group and the Hastings Center in association with the National Hospice and Palliative Care Organization monograph, Access to Hospice Care: Expanding Boundaries, Overcoming Barriers . It was noted that all these reports call for substantive changes to improve access to palliative care across the life span, in all health care settings, during all stages of debilitating chronic or life-threatening illness or injury. These changes include enhancements in the quality of care, restructuring of health care system regulations on service, education of health care professionals and research to support evidence-based palliative care practice.
Translating the corpus of these principles into user-friendly tools that allow practicing community physicians or institutionally based practices to easily translate them into culturally sensitive practice guidelines remains a challenge. Great Britain’s National Health Service has made major progress in meeting this challenge. An initiative, called the Gold Standards Framework (GSF), was started by a single general practitioner and is designed to educate community-based primary care physicians on palliative care standards. GSF provides a toolkit for assessing prognosis and counseling individuals with a limited prognosis (see www.goldstandardsframework.nhs.uk ). It has now been now adopted by 4500 practices covering half the English population.
A set of useful resources is available to clinicians to facilitate developing these skills (see www.hospicecare.com/resources/treatment.htm , in addition to the Resources section in this chapter).
Besides broad agreement about the principles and practice of palliative care, there is also general recognition that changes in the health care system need to occur. These include the following:
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Broader access to palliative care in all stages of life-limiting conditions
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A focus on the quality of end-of-life care
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More professional education in palliative care
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More research to enhance the scientific basis for palliative care practice and guidelines
Although clinical guidelines can be expected to make a contribution to several of these goals, they are not sufficient to achieve all these aspirations. Moreover, guidelines are not likely to be effective in changing traditional practice patterns unless they are disseminated to more physicians, and unless physicians are motivated to adopt such guidelines and be held accountable for performance consistent with the guidelines. Steps to facilitate these critical behavioral changes will be more fully addressed in the next section.
Beyond Guidelines: Steps to Effect Behavioral Changes among Professionals, Patients, and Their Caregivers
Improving the Palliative Care Content within General and Specialty Clinical Guidelines
Ideally, palliative care standards should be integrated into the care pathways of all clinical management guidelines that focus on life-limiting conditions. Studies indicate that this is not the case. Mast and co-workers surveyed 91 guidelines representing nine significant life-limiting conditions for palliative care guidance and found that only 10% had significant palliative care content, and 64% had minimal content. The absence of palliative care references in such guidelines may undermine the importance of palliative care in the eyes of generalists and specialists who manage such diseases.
As described previously, experts in palliative care have developed guidelines for specialists in their own field. Nonetheless, there is a critical need for palliative care principles to be disseminated more broadly, especially to non–palliative care physicians who use disease management guidelines in their clinical practices. The American Hospice Foundation Guidelines Committee recognized the lack of end-of-life issues in most chronic disease management guidelines. In 2004, this group developed a template that recommended how other medical specialty guidelines could integrate palliative care principles into the initial assessment, diagnosis, treatment, and concluding phases of managing life-limiting diseases.
Strategies to Incorporate Guidelines into Clinical Practice
The gap between existing evidence-based recommendations and actual clinical practice is well documented. A variety of interventions to close this gap (such as medical record audits and feedback, academic detailing, chart-based reminders, computer decision support, and benchmarking) have been studied and tried, although no one intervention has been shown to consistently change behavior among health care professionals across all settings. It is clear that passive dissemination alone, such as traditional continuing medical educational (CME) efforts, is one of the least effective techniques; however, a recent study demonstrated that CME utilizing a more interactive format with multimedia and live demonstration can improve knowledge, practice behavior, and clinical practice outcomes.
The Challenge of Changing Patient and Caregiver Behavior
Effective implementation strategies to ensure that guidelines are broadly disseminated must also involve patients and caregivers in medical decision making and self-management. Fortunately, public versions of guidelines are available and formatted in ways that are understandable to the layperson and caregivers. Such material is available in multiple formats (e.g., brochures, videos, audiotapes, websites). Examples can be found on various websites, including Get Palliative Care ( www.getpalliativecare.org ), Palliative Care, The Relief You Need When You’re Experiencing the Symptoms of Serious Illness ( www.ninr.nih.gov/NR/rdonlyres/01CC45F1-048B-468A-BD9F-3AB727A381D2/0/NINR_PalliativeCare_Brochure_508C.pdf ), and Aging With Dignity ( www.agingwithdignity.org/5wishes.html ); books on advanced care planning, such as Molloy’s Let Me Decide (see http://www.planningwhatiwant.com.au/Documents/c%20let%20me%20decide.pdf ); and booklets and videos in several languages used in Canadian studies on the implementation of health care choices for life-threatening illness, cardiac arrest, and nutritional support.
An innovative video series of relatively short patient interviews has been designed to improve patient decision making on difficult end-of-life care issues. Volandes has tested these in a variety of populations in the United States and abroad. This approach enabled patients to better visualize what “comfort care,” “limited care” and “life-prolonging care” would mean to them. Seeing the videos had a measurable influence on their decisions compared with those who received only more traditional one-on-one counseling about such decisions (see http://news.harvard.edu/gazette/story/2009/06/video-can-help-patients-make-end-of-life-decisions/ ).
Diffusion of Information and Training: Applying Lessons to the Adoption of Palliative Care
Diffusion studies is a field that analyzes the processes that contribute to or inhibit the dissemination of an innovation. Effectively applying its insights can help make quality palliative care more available.
Palliative is a form of innovation—that is:
An idea, practice, or object that is perceived as new by an individual or another unit of adoption…. Diffusion is the process by which an innovation is communicated through certain channels over time among the members of a social system…The four main elements are the innovation, communication channels, time, and the social system. These elements are identifiable in every diffusion research study, and in every diffusion campaign or program.
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