Lessons learned and not learned from the SUPPORT project
Hospitalization; Adult; Euthanasia; Health Care Costs; quality of life; Randomized Controlled Trials; Human; decision making; Terminally Ill; Passive
1999
Teno JM
Palliative Medicine
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Putting patient and family voice back into measuring quality care for the dying
1999
Teno JM
The Hospice Journal
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/0742-969x.1999.11882936" target="_blank" rel="noreferrer">10.1080/0742-969x.1999.11882936</a>
Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness
Palliative Care; Terminal Care; Terminally Ill; Patients; Research Design; Quality of Health Care; quality of life
Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care. [References: 29]
1999
Teno JM; Byock I; Field MJ
Journal Of Pain And Symptom Management
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(98)00134-1" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00134-1</a>
Methodological challenges for measuring quality of care at the end of life
Humans; Research Design; Quality of Life/psychology; Quality Assurance; Terminal Care/standards; Health Care/methods; Health Care/statistics & numerical data
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient’s death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.
1999
Fowler FJ; Coppola KM; Teno JM
Journal Of Pain And Symptom Management
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(98)00133-x" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00133-x</a>
Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy"
Humans; Male; Middle Aged; Family Relations; Hospices; Quality of Health Care; Primary Health Care; patient care team; referral and consultation; empathy; Neoplasms; Palliative Care/standards; social support
Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700 hospice programs. We use an illustrative case of a palliative care hospitalization and intervention for a middle-aged man with severe pain from spinal metastases to discuss 4 key questions that a primary care physician faces in caring for the seriously ill patient with difficult symptom management: (1) Should I refer a patient to a hospital-based palliative care team or to hospice services for difficult symptom management? (2) If the patient is referred to a hospital-based palliative care team, what should I, as the primary care physician, expect? (3) When should I refer to hospice services a patient initially referred to a hospital-based palliative care team? and (4) How can I choose a hospice program that will provide competent, coordinated, and compassionate patient- and family-centered care? Primary care physicians now may choose among hospice programs, and the programs may vary in their quality of care. Validated tools to measure patient and family perceptions of the quality of hospice care are now available but progress in defining and measuring the quality of hospice care is still needed before actionable information will be available to guide the choice of hospice programs for physicians and consumers.
2009
Teno JM; Connor SR
Journal Of The American Medical Association
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/jama.2009.109" target="_blank" rel="noreferrer">10.1001/jama.2009.109</a>