Data and Research:

• Raising The Standard: Palliative Care In Nursing Homes
  Health Affairs, Diane E. Meier, Betty Lim and Melissa D.A. Carlson, January 2010
  More than two-thirds of long-stay nursing home residents suffer from dementia. This illness has a variable and unpredictable course that renders it a poor fit for the six-month life-expectancy requirement of the Medicare hospice benefit. Palliative care-a form of treatment that strives to match care to patient goals, relieve pain, and improve quality of life for people with chronic or life-threatening illnesses-should be the standard of practice for all elderly dementia patients in nursing homes, regardless of prognosis. Similar principles could apply to other long-term residents with underlying chronic diseases who would benefit from palliative care. Indeed, we would argue that the growing acceptance of the culture-change movement centered on elder-directed goals in nursing homes is promising evidence of the goodness-of-fit of palliative care principles in the long-term care setting.
  

• Decision Making Near Life's End: A Prescription for Change
  Muriel R. Gillick, M.D., Department of Ambulatory Care and Prevention, Harvard Medical School, Boston, Massachusetts. Published in Volume: 12 Issue 2: February 10, 2009 Journal of Palliative Medicine. February 2009
  Abstract
  The publication of SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) in 1995 identified major problems with decision making near the end of life. Since that time, palliative care has developed as a specialty and end-of-life communication has evolved. However, five problems in decision-making remain today: the need to discuss underlying health status with patients; the overburdening of patients and families with too many choices; lack of appreciation of the importance of symbolism in end-of-life care; confusion between cultural beliefs and scientific facts; and difficulties with making decisions because of rapid shifts by the medical team from advocating cure to comfort. Each of these issues is described.
  

• A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients
  - The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)
  Results. Thephase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time. 

• Medical Orders for Life-Sustaining Treatment (MOLST) Demonstration Program
  • September/October Update (PDF) 
  • June 2009 Update (PDF) 
  • May 2009 update (PDF) 
    
    
• Perspective - Opportunities To Improve The Quality Of Care For Advanced Illness
  An Aetna pilot program shows how it can be done.
  by Randall Krakauer, Claire M. Spettell, Lonny Reisman, and Marcia J. Wade, Health Affairs, Volume 28 , Number 5
  ABSTRACT: Many studies describe a sizable chasm between the care Americans consider optimal for advanced illness and what we actually experience. Aggressive or curative measures may be pursued to the exclusion of comfort, pain relief, and psychosocial support.We briefly describe a care management program that gives people culturally sensitive supportive information, to make informed choices and obtain palliative services in a timely manner. In the sample population, more members chose hospice care; acute care utilization declined. It is possible to assist Americans with advanced illness and remove barriers to selecting hospice care, if that is their choice, without adverse financial impact.
  
• Comprehensive Case Management Program To Improve Palliative Care (PDF) 
  JOURNAL OF PALLIATIVE MEDICINE, Volume 12, Number 9, 2009
  Spettell, Rawlins, etc.
  The objective of this study was to evaluate the impact of comprehensive case management (CM) and expanded insurance benefits on use of hospice and acute health care services among enrollees in a national health plan....Hospice care helps to meet the needs of patients with advanced illness by providing effective pain and symptom management and support for the emotional and spiritual needs of patients and their caregivers.
  
  
• Special Commission on the Health Care Payment System
  - See all Special Commission on the Health Care Payment System information including recommendations released on July 16th on the payment commission's website at http://www.mass.gov/dhcfp/paymentcommission
  
  
• Four Data Presentations to MA Expert Panel on End of Life Care June 8 and June 29, 2009 Meetings (PDF) 
  
• AARP Massachusetts End of Life Survey (PDF) 
• AARP Massachusetts End of Life Survey Executive Summary Report (PDF) 
  
• Improving Quality, Reducing Cost Through Increased Access to Palliative Care - Recommendations for Health Care Reform (PDF) 
  

• Means to a Better End: A Report on Dying in America Today
  by The Robert Wood Johnson Foundation, Published: November 08, 2002
  Many Americans are not aware of the options available for those who are terminally ill. In this report, Last Acts rates each of the 50 states and the District of Columbia on the quality and availability of appropriate end-of-life care.
  
  

---

This information is provided by the Health Care Quality and Cost Council.