Making the Case for PC

Brumley RD, Enguidanos S, Cherin DA. (2003). Effectiveness of a home-based palliative care program for end-of-life. J Palliat Med Oct;6 (5):715-24.

Despite the widespread recognition of the need for new models of care to better serve patients at the end-of-life, little evidence exists documenting the effectiveness of these models. This study, from the Home Health Department at Kaiser Permanente, TriCentral Service Area examined the effectiveness of a palliative program for end-of-life care. A total of 558 patients were enrolled over a 2-year period.

The Kaiser Permanente Palliative Care Project is a multidisciplinary care management approach for home-based end of life care and treatment. The present project was designed to facilitate the transition from acute to palliative care during the last 12 months of life, with the goal of improving quality of life through the provision of symptom control and pain relief measures, emotional and spiritual support, and patient education. Medical service use and satisfaction with services were measured. Among the reported results were that palliative care patients had increased satisfaction with services at 60 days after enrollment and significantly fewer emergency department visits, hospital days, skilled nursing facility days, and physician visits than those in a comparison group. In addition, those enrolled in palliative care averaged a 45% decrease in costs as compared to usual care patients.

Feeg VD, Elebiary H. (2005). Exploratory study on end-of-life issues: barriers to palliative care and advance directives. Am J Hosp Palliat Care. 2005 Mar-Apr;22(2):119-24.

The authors look at end-of-life care professionals’ perceptions of death and dying, and particularly their attitudes toward rendering palliative care (rather than attempting curative measures). According to the authors, palliative care is often preferable to the dying patient—they say that in the United States, as in most developed countries, death is rarely unexpected but rather occurs rather expectedly in older persons with chronic progressive illnesses that often are complicated by infections or exacerbations. Many patients with terminal illnesses choose palliative care to relieve symptoms and improve the quality of their lives, and strive for a peaceful death.

A survey on hospice and palliative care service administered by the SOLACE (Supporters of Life-Affirming Care at End of Life) organization, based in Virginia, is reported on in this study. SOLACE is a coalition of interdisciplinary professionals dedicated to improving end-of-life care, and the objectives of this survey project were to identify and describe: 1) professionals' perceptions about barriers related to hospice and palliative care, 2) professionals' opinions about barriers related to dying at home, 3) professionals' perceptions about barriers related to advance directives, and 4) relationships between professionals and their perceived barriers to advance directives and hospice and palliative care. The top 3 obstacles to providing needed palliative care that were uncovered by the SOLACE survey were: 1) physician reluctance to make referrals; 2) physician lack of familiarity with availability and suitability of hospice; and 3) association of hospice with death.

Foley, KM. (2005) The past and future of palliative care. The Hastings Center Report. Special Report 35, no. 6: S42-S46.

A growth in the convergence of hospice and palliative care movements has occurred in the last 15 years that reflects a growing response by a range of stakeholders to improve the quality of life for patients and families living with serious chronic illnesses. To date, much of palliative care delivery is based in hospitals, and several palliative care unit programs at the Cleveland Clinic and M.D. Anderson Cancer Center have pioneered this in-patient model.

Much work needs to be done to foster wider-spread acceptance and use of palliative care. At present, an attempt to develop a palliative care DRG (diagnostic related group) code is underway that will facilitate official recognition of palliative care and insurance coverage. Also much needed for progress in palliative care to occur is education (i.e., specific training in palliative care) and creation of national standards for delivery. According to the author: “The challenges going forward are to define the domains of palliative care and model a program that provides continuity of care throughout the trajectory of illness.

Jerant AF, Azari RS, Nesbitt TS, Meyers FJ. (2004). The TLC model of palliative care in the elderly: preliminary application in the assisted living setting. Ann Fam Med. Jan-Feb;2(1):54-60.

Substantial shortfalls in the quality of palliative care of the elderly can be attributed to 5 fundamental flaws in the way that end-of-life care is currently delivered and which impede progress in palliative care development and use are identified as follows:

Palliative care is viewed as a terminal event rather than a longitudinal process, resulting in a reactive approach and unnecessary preterminal distress in elderly patients suffering from chronic, slowly progressive illnesses.
Palliative care is defined in terms of a false dichotomy between symptomatic and disease-focused treatment, which distracts attention from the proper focus of healing illness.
The decision about whether the focus of care should be palliative is not negotiated among patients, family members, and providers.
Patient autonomy in making treatment choices is accorded undue prominence relative to more salient patient choices, such as coming to terms with their place in the trajectory of chronic illness.
Palliative care is a parallel system rather than an integrated primary care process.

A new theoretical framework--the TLC model (signifying timely, longitudinal, and collaborative comprehensive care)--addresses these flaws in the provision of palliative care for elderly persons. Preliminary results of an intervention for elderly assisted living residents based on the TLC model support its promise as a framework for optimizing palliative care of elders.

Morrisson, RS, Maroney-Galin, C, Kralovec, PD, Meier, DE. (2005) The growth of palliative care programs in United States hospitals. J Palliat Med 8(6): 1127-1134.

This study of hospital-based palliative care programs indicated a 67% increase in the number of programs between the years 2000-2003 in U.S. hospitals. There were a total of 1027 palliative programs identified, representing 25% of all U.S. hospitals. Patients receiving palliative care reported better symptom control, more satisfaction with their treatment, and better utilization of resources.

There is still work to be done to mainstream palliative care programs, however. According to Diane Meier, a co-author of this study, who was interviewed about palliative care [in Hospital and Health Networks, Dec. 2003: 18): “There is still confusion about what palliative care is…” She noted in that interview that palliative care is not hospice care but can work with hospice care, if needed. Nevertheless, where hospice basically focuses on the last months of life, palliative care focuses on maintaining quality of life for patients with advanced illness who may yet have many years to live. Patients should not necessarily just wait for care services until they are ready for hospice admission. Instead, Meier argues: “These patients and their families need a great deal of sophisticated care and guidance” early on and which they ought to receive through a palliative care team—one that is much like a hospice team comprised of nurses, social workers, chaplains, and physicians.

National Cancer Policy Board, Institute of Medicine. (2001) Improving Palliative Care for Cancer: Summary and Recommendations. Washington, DC: National Academy of Sciences Press. [Available online at: http://www.nap.edu/books/0309075637/html ]

Care at the end of life for cancer patients needs to be focused not only on the very last days but over an often very long period that many live through. According to this study, better care for cancer patients requires much improved palliative care delivery efforts. The Board authors note that of the 500,000 Americans who die from cancer each year, only about half receive any palliative care services. These authors contend that new measures beyond research in curative therapies are particularly needed now that medical advances enable cancer patients to live longer than ever before.

Ten recommendations for improving educational and service efforts for advancing palliative care research and clinical practice include the needs for accessible treatment centers; compensation by insurers for end of life care patient services; and widespread public education about palliative care services that are available throughout the course of the disease. Special attention should be paid to the needs of children and minority group members. Foremost, however, aggressive palliative care provided throughout the continuum of care for cancer patients is essential for quality care delivery.

Ryndes, T, Emanuel, L. (2003). Is discontinuity in palliative care a culpable act of omission? The Hastings Center Report, Special Supplement 33 (2): S45-S47.

At the outset, the authors say: “The fragmentation and discontinuity of care in the present [health] system should become major concerns in palliative care.” They say that people facing life threatening illness should be able to receive excellent palliative care whether in hospice or in another care setting.

Much of the discontinuity may be attributable to patients’ moving from care setting to setting as their illnesses progress. In hospice, staff persons are charged by the Medicare Conditions of Participation with specific responsibilities to both provide and oversee palliative care as the patient moves across care sites with which the hospices have contractual relationships. As the authors note, continuity of care is optimized by this form of care management, not just for addressing the patients’ medical needs but for providing the growth opportunity that rises out of therapeutic support in life closure tasks.

But there’s more to life-time care than just attending to end of life care needs and this includes providing palliative care at the period nearing or somewhere near the end of life. To receive optimal care throughout these periods, more consistently planned services are needed. The authors conclude: “In an ideal world, we should feel confident that all care providers share pertinent information in a coordinated system that serves the patient throughout the course of his or her illness.” However, certain conditions must be met for this coordinated system to operate effectively. As the authors suggest, for this to occur and benefit the patient:

conditions must be in place to insure that a patient’s information follows him through a range of care settings;
case management must also be in place that works across institutional lines to ensure maximized continuity in the individuals who provide care; and
uniform standards of palliative care across care settings must be developed.

Back to Telepalliative Home Care