Palliative Care Focus
CONJ 660, CONJ 667, CONJ 682, CONJ 683, CONJ 684, CONJ 685
The need for improved care of patients and families at the end of life by health care professionals, especially physicians, is well established. The increasing demand for end-of-life care generated by the "graying" of the "baby boom" generation adds urgency to this need. Here are some facts:
- Almost 2.5 million Americans die each year, most of whom are 65 years of age or older.
- Seventy percent of these deaths are a result of predictable chronic illnesses, led by heart disease, cancer, and stroke.
- Thus, 1.75 million of the projected deaths in 2003 are candidates for a palliative care approach.
- In 2003, 950,000 patients were served by hospice in the U.S. Of these patients, over 25% died within 7 days or less on hospice and only 6% were on hospice for longer than 6 months. The median length of stay was only 16.0 days.
- Nearly a million patients and families who were candidates for hospice care by the nature of their chronic illnesses did not participate in hospice.
Health care providers can greatly benefit patients and families with chronic illness at the end of life by providing optimal palliative care sooner in the trajectory of illness and much more often. Despite many efforts to improve palliative care in the U.S., a number of barriers and challenges remain. Those most relevant to the palliative care track are described as follows by the Institute of Medicine Report: Approaching Death.
- "Too many people suffer needlessly at the end of life both from errors of omission when [medical professionals] fail to provide palliative and supportive care known to be effective and from errors of commission when [medical professionals] do what is known to be ineffective and even harmful."
- "The education and training of physicians and other health care professionals fails to provide them with knowledge, skills, and attitudes required to care well for the dying patient [and family]. "Many deficiencies in practice stem from fundamental prior failures in professional education."
- "Undergraduate, graduate and continuing education do not sufficiently prepare health professionals to recognize the final stages of illness."
Recent research continues to support these conclusions.
TRADITIONAL EMPHASIS ON CURE OVER PALLIATION
Currently, the transition to palliative care usually depends on recognizing when curative care will no longer provide survival benefit. Several studies document that for the most common chronic illnesses our ability to predict death within six months is poor no matter what models are used. Physicians thus delay the transition to palliative care until their prognostic precision is sufficient to predict the futility of further treatment. The national trend of decreasing hospice length of stays (1998 average, 51.3 days; 2001 average, 47.7 days) indicates that the palliative care transition continues to occur late in the disease trajectory. Cure and technical interventions are heavily emphasized in the training of future physicians. The dominant message is that the point of "no benefit" to a patient is the time for transition to palliative care. This model implicitly and explicitly values cure over palliation throughout the trajectory of illness and leads to late transitions to palliative care denying many patients the most appropriate care at the end of their lives.
INNOVATIVE PALLIATIVE/END-OF-LIFE CARE EDUCATION SUPPORTED BY RESEARCH
Recent research in end-of-life and palliative care offers new knowledge and models for developing effective education for medical students during their clinical years. The palliative care track synthesizes new knowledge and models into a Best Practice model of end-of-life/palliative care.
Best Practice Module 1-Recognition/Developing a Therapeutic Relationship/Setting the Context:
- Recognition: Recognizing when it is appropriate to discuss palliative and end-of-life care options with patients and families earlier in the disease trajectory of chronic illness is a high priority for experienced palliative care clinicians. Research and expert opinion indicate that earlier discussions can be achieved by reducing the focus on the effectiveness of curative care and prognositic accuracy that delay such discussions until death is the only likely outcome of chronic illness. Many palliative care researchers use the question, "Would you be surprised if this patient died in the next year?" as a way of identifying patients who are candidates for a palliative care discussion much earlier in the trajectory of illness
- Developing a Therapeutic Relationship: One concept on which all parties living with life limiting illness- ill persons, family members and health care team members - strongly agree is the importance of the presence of a therapeutic relationship (Farber, Egnew and Herman-Bertsch, 1999; 2002). This agreement provides the most effective avenue for providing optimal medical care in general and palliative/hospice care in particular.
- Setting the Context: Conducting a discussion that explores the possibility of moving from curative to palliative/hospice approaches of care is a challenging task. These types of discussions are often difficult for everyone involved - patients, families and clinicians. The fact such discussions are difficult is one of the major reasons why they either don't occur or only occur extremely late in the trajectory of illness. The ability of a clinician to set a context where such discussions are safe and to invite patients' and families' into such a discussion is critical for success.
Best Practice Module 2-Soliciting the Patient/Family Story:
Once clinicians recognize the need for a palliative care discussion earlier in the trajectory of illness, their humanistic and communication skills become essential for effectively conducting such a discussion. Numerous researchers have articulated the necessary components of effective palliative care discussions. These include establishing a therapeutic relationship, exploring the patient's and family's narrative with special attention to their values and goals, and placing these goals at the center of clinical decision-making. Almost half a century of medical research confirms the need to include the patient's and family's personal experience when providing palliative and end-of-life care. The fact that over 40 years later we are still trying to integrate these well-documented patient-centered goals into end-of-life medical care speaks to the magnitude of the challenge. One model for effective palliative care discussions is the Patient-Centered Method developed by Stewart and her colleagues, which has been extensively studied. It emphasizes the importance of the patient and family perspective as well as shared decision-making that assures the exploration of both personal and cultural issues in a medical encounter. Several qualitative studies confirm the principles of the patient-centered method as best practices of communication and shared decision-making models adopted by expert palliative care physicians in their clinical practice.
Best Practice Module 3-Individualization:
Once the palliative care discussion is effectively initiated, an individualized plan of palliative care should be developed for those patients and families interested in this approach. Two factors affect whether a palliative care plan is appropriately individualized for a particular patient and family: the congruence of the plan with values and goals expressed by the patient and family and the clinician's abilities to apply complex knowledge and skills. Successful implementation of an individualized palliative plan of care depends upon the integration of patient and family values and goals with technical medical skills (e.g., pain and symptom management), family resources (e.g., financial, social, emotional, spiritual, and community), understanding of health care delivery systems (e.g., hospice, home health, long-term care, and insurance benefits), and general community resources (e.g., availability of hired caregivers, social programs for bereavement and support groups). A competent application and integration of these multiple skills requires a high degree of experience and expertise. Research by Farber et al. indicates that mastery of these skills in our present educational environment requires a minimum of 10-15 years of clinical experience.
Best Practice Module 4-Integration:
In the first three modules the Best Practice Model is broken into its component parts and compared to more common practice with a biomedical focus:
- Recognition/developing a therapeutic relationship/setting the context
- Soliciting the patient/family story
- Individualizing a palliative care plan
In Module 4 all steps of the Best Practice Model will be integrated and the student will be asked to critically evaluate both the integrated best practice model and the more common practice using a biomedical focus.
The palliative care track presents a simple Best Practice Model that allows you to observe a wide range of clinical experiences in palliative care that should give you a deep understanding of the outcomes for patients and families of optimal palliative care as well as the attitudes, knowledge, and skills that support such practice. Further, you will observe and experience the consequences for patients, families, and health professionals when appropriate palliative care approaches are not used. This experience should provide you with an enduring foundation on which to build your education during residency and clinical practice and to accelerate your mastery of the skills needed to provide optimal palliative care.
Chronic Care Course Syllabus