The National Academy of Sciences through its Institute of Medicine (IOM) has produced a major scholarly assessment of pain in America. This document is a tremendous contribution to the evolving nec...

Relieving pain in america: a blueprint for transforming prevention, care, education, and research

Context There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer. Objective To determine the effect of a nursing-led intervention on quality of life, symptom intensity, mood, and resource use in patients with advanced cancer. Design, Setting, and Participants Randomized controlled trial conducted from November 2003 through May 2008 of 322 patients with advanced cancer in a rural, National Cancer Institute–designated comprehensive cancer center in New Hampshire and affiliated outreach clinics and a VA medical center in Vermont. Interventions A multicomponent, psychoeducational intervention (Project ENABLE [Educate, Nurture, Advise, Before Life Ends]) conducted by advanced practice nurses consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n = 161) vs usual care (n = 161). Main Outcome Measures Quality of life was measured by the Functional Assessment of Chronic Illness Therapy for Palliative Care (score range, 0-184). Symptom intensity was measured by the Edmonton Symptom Assessment Scale (score range, 0-900). Mood was measured by the Center for Epidemiological Studies Depression Scale (range, 0-60). These measures were assessed at baseline, 1 month, and every 3 months until death or study completion. Intensity of service was measured as the number of days in the hospital and in the intensive care unit (ICU) and the number of emergency department visits recorded in the electronic medical record. Results A total of 322 participants with cancer of the gastrointestinal tract (41%; 67 in the usual care group vs 66 in the intervention group), lung (36%; 58 vs 59), genitourinary tract (12%; 20 vs 19), and breast (10%; 16 vs 17) were randomized. The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of 4.6 (2) for quality of life (P = .02), −27.8 (15) for symptom intensity (P = .06), and −1.8 (0.81) for depressed mood (P = .02). The estimated treatment effects in participants who died during the study were a mean (SE) of 8.6 (3.6) for quality of life (P = .02), −24.2 (20.5) for symptom intensity (P = .24), and −2.7 (1.2) for depressed mood (P = .03). Intensity of service did not differ between the 2 groups. Conclusion Compared with participants receiving usual oncology care, those receiving a nurse-led, palliative care–focused intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher scores for quality of life and mood, but did not have improvements in symptom intensity scores or reduced days in the hospital or ICU or emergency department visits. Trial Registration clinicaltrials.gov Identifier: NCT00253383

https://jamanetwork.com/journals/jama/articlepdf/184422/joc90071_741_749.pdf

Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer: The Project ENABLE II Randomized Controlled Trial

CONTEXT
There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer.


OBJECTIVE
To determine the effect of a nursing-led intervention on quality of life, symptom intensity, mood, and resource use in patients with advanced cancer.


DESIGN, SETTING, AND PARTICIPANTS
Randomized controlled trial conducted from November 2003 through May 2008 of 322 patients with advanced cancer in a rural, National Cancer Institute-designated comprehensive cancer center in New Hampshire and affiliated outreach clinics and a VA medical center in Vermont.


INTERVENTIONS
A multicomponent, psychoeducational intervention (Project ENABLE [Educate, Nurture, Advise, Before Life Ends]) conducted by advanced practice nurses consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n = 161) vs usual care (n = 161).


MAIN OUTCOME MEASURES
Quality of life was measured by the Functional Assessment of Chronic Illness Therapy for Palliative Care (score range, 0-184). Symptom intensity was measured by the Edmonton Symptom Assessment Scale (score range, 0-900). Mood was measured by the Center for Epidemiological Studies Depression Scale (range, 0-60). These measures were assessed at baseline, 1 month, and every 3 months until death or study completion. Intensity of service was measured as the number of days in the hospital and in the intensive care unit (ICU) and the number of emergency department visits recorded in the electronic medical record.


RESULTS
A total of 322 participants with cancer of the gastrointestinal tract (41%; 67 in the usual care group vs 66 in the intervention group), lung (36%; 58 vs 59), genitourinary tract (12%; 20 vs 19), and breast (10%; 16 vs 17) were randomized. The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of 4.6 (2) for quality of life (P = .02), -27.8 (15) for symptom intensity (P = .06), and -1.8 (0.81) for depressed mood (P = .02). The estimated treatment effects in participants who died during the study were a mean (SE) of 8.6 (3.6) for quality of life (P = .02), -24.2 (20.5) for symptom intensity (P = .24), and -2.7 (1.2) for depressed mood (P = .03). Intensity of service did not differ between the 2 groups.


CONCLUSION
Compared with participants receiving usual oncology care, those receiving a nurse-led, palliative care-focused intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher scores for quality of life and mood, but did not have improvements in symptom intensity scores or reduced days in the hospital or ICU or emergency department visits.


TRIAL REGISTRATION
clinicaltrials.gov Identifier: NCT00253383.

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Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer

The National Healthcare Disparities Report summarizes health care quality and access among various racial, ethnic, and income groups and other priority populations, such as residents of rural areas and people with disabilities.

National Healthcare Disparities Report

Shared decision making for advanced heart failure has become both more challenging and more crucial as duration of disease and treatment options have increased. High-quality decisions are chosen from medically reasonable options and are aligned with values, goals, and preferences of an informed patient. The top 10 things to know about decision making in advanced heart failure care are listed in Table 1.

View this table:

Table 1. 
Top Ten Things to Know



Providers have an ethical and legal mandate to involve patients in medical decisions. Shared decision making recognizes that there are complex trade-offs in the choice of medical care.1 Shared decision making also addresses the ethical need to fully inform patients about the risks and benefits of treatments.2 In the setting of multiple reasonable options for medical care, shared decision making involves clinicians working with patients to ensure that patients' values, goals, and preferences guide informed decisions that are right for each individual patient.

Grounded in the ethical principle of autonomy,3 judicial decisions (eg, Cruzan v Missouri Department of Health 4) and legislative actions (eg, the Patient Self-Determination Act5) have repeatedly affirmed the rights of patients or duly appointed surrogates to choose their medical therapy from among reasonable options.6 The formal process of informed consent before procedural interventions is an embodiment of this concept in that it underscores the clinician's obligation to ensure that the patient has the opportunity to be informed.3 An informed patient is one who is aware of the diagnosis and prognosis, the nature of the proposed intervention, the risks and benefits of that intervention, and all reasonable alternatives and their associated risks and benefits.7 A major purpose of a high-functioning healthcare system is to provide the resources with which an activated, informed patient can engage in productive discussions with a proactive, …

/pdf/decision-making-in-advanced-heart-failure-a-scientific-1x8c34o6rq.pdf

Decision Making in Advanced Heart Failure A Scientific Statement From the American Heart Association

https://www.legacy-hospice.com/media/Healthcare%20Pros/Timing%20of%20Referral%20to%20Hospice%20&%20Qaulity%20of%20Care.pdf

Janet E. Shu

Papers

Timing of Referral to Hospice and Quality of Care: Length of Stay and Bereaved Family Members' Perceptions of the Timing of Hospice Referral