Areas of Interest
Pain and Symptom Management
Ample evidence demonstrates that patients with serious illness experience a multitude of profoundly distressing symptoms that devastate them and consume their families.
A conservative estimate suggest that of the 1 million persons who died in a U.S. hospital in 2001, 324,000 had fatigue, 280,000 had loss of appetite, 244,000 had shortness of breath, 232,000 had dry mouth and oral ulcers, 208,000 had cough, 196,000 had pain, 148,000 had confusion, 148,000 had depression, 140,000 had nausea, 92,000 had difficulty sleeping, and 88,000 had vomiting. The reasons for this distressing state of affairs are many but almost all stem from a philosophy of medical research that has traditionally viewed symptoms and suffering as unimportant in themselves and interesting only insofar as they guide the physician to a correct diagnosis.1
The prevailing philosophy dictates that once the diagnosis is made (e.g., cancer) and the disease is treated (e.g., chemotherapy), the symptoms (e.g., breathlessness, pain) will dissipate. What should be done to relieve suffering during treatment or when a disease can't be treated or cured is rarely discussed, and certainly has not been researched. It is not surprising, therefore, that a recent NIH-supported comprehensive review of research in palliative medicine revealed that data that should guide the treatment of these symptoms are not only inadequate but in many instances completely absent. As a result, current clinical practice regarding symptoms is not driven by evidence but is guided by information obtained from other populations, small single institution and underpowered studies, and most commonly, anecdote and hearsay.
From the cellular to the social level, important unanswered questions exist about the fundamental nature and treatment of the symptoms that cause so much suffering. The NPCRC is dedicated to rapidly addressing this situation.
1von Gunten CF. Interventions to manage symptoms at the end of life. J Palliat Med. 2005;8 Suppl 1:588-94.
Skilled communication is one of the cornerstones of modern palliative care. Health care professionals are commonly called upon to deliver bad news to patients (e.g., a diagnosis of cancer, a diagnosis of ALS), discuss goals of care (e.g., what treatments meet the values and goals of the individual patient and their family), and make complicated and difficult treatment decisions (e.g., decisions to stop treatments such as chemotherapy or mechanical ventilation that no longer meet treatment goals, decisions to enroll in experimental protocols).
Abundant research demonstrates that physicians are uncomfortable having these discussions, infrequently engage in them, and when they do, rarely perform them in a manner that is patient- rather than physician-centered or meets the expressed needs of patients and families. Indeed, most patients report being dissatisfied as to how physicians communicate bad news or explain treatment decisions.
A major reason for these findings is that doctors are not trained in the critical skills of communication and even when such training is undertaken, there is no evidence that such training produces the desired result, a substantial change in physician behavior. That is, although protocols exist to guide these types of discussions, these protocols are based on expert opinion and experience and have never been subject to rigorous evaluation to determine whether they are effective. Furthermore, no studies are available to guide physicians as to whether and how these protocols should be modified for patients of different ethnicities and cultures.
The NPCRC is committed to research that focuses on strategies to better understand and improve communication between healthcare providers and patients and families.
Models of Health Care Delivery
Medicare is targeted to acute, episodic illness and is ill-equipped to respond to the long-term needs of the chronically ill. Medicare covers acute hospitalizations, physician services, rehabilitation, and short-term post-hospital care. Since 1983, the Medicare hospice benefit also provides care to patients if they are certified by their physicians to be within 6 months of death and if they are willing to forego coverage for life-prolonging treatments. It is the minority of people with life-threatening illness – limited to a subset of those with predictable prognoses - who can benefit from this system.
For example, the typical patient diagnosed with metastatic colon cancer will enjoy a relatively stable period of good functional status followed by a predictable and rapid period of functional decline before death. This person can be well served by traditional Medicare during their time of stable health and by the Medicare hospice benefit during the short period of disability prior to death. However, the vast majority of patients with serious and chronic illness have uncertain life prognoses, poorly predictable disease trajectories, and require care beyond that typically provided by acute care hospitals, physician office visits, and hospice.
These patients make multiple transitions between care settings and require long term care at home or in skilled nursing facilities, care coordination as they traverse a fragmented system, personal (bathing, dressing, toileting) and custodial (shopping, housekeeping, laundry) care needs, home infusion therapies, and transportation to physicians' offices and other healthcare settings - most of which remain uncovered by Medicare and third party payers.
Successful care of persons with chronic illness will require the development of new and evaluation of existing, models of care delivery (e.g., hospital based palliative care programs) that span the existing continuum of care and are successfully integrated within existing health care structures (e.g., hospitals, nursing homes, home care, rehabilitation facilities).
The NPCRC, in partnership with the Center to Advance Palliative Care, is dedicated to evaluating models and developing new models of care for seriously ill patients and their families.