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Information about ongoing health services research and public health projects

Shared decision making and renal supportive care
Investigator (PI): Cohen, Lewis Mitchell
Performing Organization (PO): (Current): Baystate Medical Center / (413) 794-0000
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2013
Final Year: 2019
Record Source/Award ID: PCORI/CD-1304-7360
Funding: Total Award Amount: $2,094,827
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: While most of us think of dialysis as being a life-saving treatment for people who develop kidney failure, the unfortunate reality is that more than one-fifth of those who receive this arduous and time consuming therapy will die each year. This is not a tragic consequence of dialysis, but rather reflects that most of the people are quite elderly and have diseases like diabetes that continue to take a toll on their hearts, brains, limbs, eyes, and other organs in addition to the kidneys. It is tragic that we now can predict which individuals are most likely to die within the next six months, and yet dialysis staff rarely ever sit down with them and their loved ones to discuss the situation. They die without completing advance directives, appointing health care proxies, or knowing they have the right to even stop dialysis. They die in intensive care units, hospitals, and nursing homes, and are never given the opportunity to discuss the possibility of receiving hospice services and dying at home surrounded by friends and loved ones. This study is based on preliminary research that started with patient, family, and caregiver focus groups, created a tool for predicting mortality, and went on to develop a communication intervention that successfully increased the use of hospice services in several Massachusetts dialysis clinics. We now wish with our PCORI patient-partners, and stakeholders including hospices and dialysis companies, to improve the intervention and show its effect on additional dialysis clinics in New Mexico as well as New England. We believe that this innovative clinical model can then be spread throughout the country.
MeSH Terms:
  • Advance Directives
  • Aged
  • Caregivers
  • Communication
  • Counseling
  • * Decision Making
  • Family
  • Focus Groups
  • Hospices
  • Humans
  • Massachusetts
  • New Mexico
  • Professional-Patient Relations
  • Renal Dialysis /*methods
  • /mortality
  • Renal Insufficiency /*mortality
  • /therapy
Country: United States
State: Massachusetts
Zip Code: 01199
UI: 20143445
CTgovId: NCT02405312
Project Status: Completed
Record History: ('2019: Project extended to 2019 ',) ('2017: Project extended to 2018',)