Palliative Care Growing, but Not for All Patients

While palliative care is increasing in hospitals generally, access to programs is not consistent throughout the United States, according to a new study published in the Journal of Palliative Medicine.

Patients’ access to palliative care programs varies across geographic regions and also depends on factors such as hospital size and tax status, researchers write in "The Growth of Palliative Care in U.S. Hospitals: A Status Report."

While 90 percent of hospitals across the country with 300 beds or more have palliative care programs, only 56 percent of smaller hospitals offer these services. Additionally, for-profit hospitals are less likely than not-for-profit or public hospitals to have palliative care programs.

The study is available free of charge on the Journal of Palliative Medicine website until November 1, 2015.

An INQRI study, "Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice," explored the relationships between quality palliative nursing care delivered in intensive care units and patient and family outcomes. The study also explored how to measure and to improve these outcomes. This interdisciplinary team was led by Lissi Hansen and Richard Mularski.

Palliative Study Identifies Best Measures of Quality Care

A recent study out of the University of Rochester seeks to identify the best available set of measures to evaluate whether facilities are delivering the highest quality service possible to palliative care and hospice patients, and their families, Epoch Times reports.

The study, “Measuring What Matters,” was led by Sally Norton, associate professor in nursing and palliative care at the University of Rochester. It narrows down 10 “Measures That Matter” from a list of 75 indicators, based on what’s most important to patients and families. They include:

• Comprehensive assessment, including physical, psychological, social, spiritual, and functional screening soon after admission;
• Screening for pain, shortness of breath, nausea, and constipation during admission;
• Documented discussion regarding emotional needs and spiritual concerns; 
• Documentation of their preferences for life-sustaining treatments; and
• Adherence to documented preferences to withhold or withdraw life-sustaining treatments.

Researchers for the study, which was published in the Journal of Pain and Symptom Management, chose scientifically rigorous measures that: were meaningful for patients and their families; are able to be implemented by providers; and that can significantly improve the level of care. Researchers hope that this study will eventually create health care benchmarks for the industry.

Norton and her colleagues also recommend developing a method for identifying all patients who could benefit from palliative and hospice care, and developing a survey for patients or their families that is valid in all settings.

The INQRI-funded “Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice” explored the relationships between quality palliative nursing care delivered in intensive care units (ICUs) and patient and family outcomes. It also explored how to measure and to improve these outcomes. The purpose of this investigator-initiated study was to examine nursing's specific contributions to quality palliative care provided to patients and their families in the ICU. This interdisciplinary team was led by Lissi Hansen and Richard Mularski.

Incorporating Patient-Reported Outcomes in Care Plans Beneficial

Improving two-way communication between patients and caregivers can improve outcomes for cancer patients in palliative care, particularly in the area of patient-reporting, according to an oncology nurse specialist and nurse scientist Jeannine M. Brant of the Billings Clinic in Montana.

During the American Society of Clinical Oncology’s inaugural Palliative Care Symposium Brant told participants “we really have a propensity to underestimate symptoms – not only the incidence, but also the severity of the symptom, and also what type of distress that symptom is causing for that individual patient. We need to incorporate patient-reported outcomes [PROs] into our clinical practice,” according to an article in The Oncology Report.

There are numerous reasons for a breakdown in communication between a care provider and patient, including patients’ embarrassment to disclose certain symptoms, the article notes. Physicians and nurses may not ask about specific symptoms due to gaps in their knowledge or time constraints.

Brant presented findings from a pilot study with the semi-automated care planning system On Q that uses both patient-reported and clinical data to generate a customized draft patient care plan. More than 90% of patients in the pilot reported being satisfied with the system and said they would recommend it to others, with one participant commenting that it provided a reminder to bring up issues they were dealing with.

An INQRI study, Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice, explored the relationships between quality palliative nursing care delivered in intensive care units and patient and family outcomes. The study also explored how to measure and to improve these outcomes. This interdisciplinary team was led by Lissi Hansen and Richard Mularski.

Palliative Education and Mentorship Needed for Clinicians

Changes are needed in how nurses and physicians are educated and trained about providing palliative care to older adults with serious illnesses, according to a Health Affairs blog written by Charles von Gunten and Betty Ferrell.

The authors contend that the fundamental approach to decision-making for elderly patients with serious illnesses should shift from the standard approach of “fixing” every biological issue, to the palliative care approach in which overall goals of care are established for the patient. However, for that to happen, clinicians need to start learning about palliative care early in their education and training. A clear standard and widely-adopted curricula for graduate and undergraduate training is needed, according to the blog:

“Although some medical schools have curricula on death and dying, the education is provided predominately through scattered didactic courses during the preclinical years. The effectiveness of the curricula is limited by the absence of immediate clinical application of the material, and hence, no opportunity to develop the necessary skills to alleviate the suffering of the patient and their loved ones.”

Efforts are underway to develop such materials, including some among nursing organizations and consortiums. The End-of-Life Nursing Education Consortium (ELNEC) project was formed to develop educational tools on core skills in palliative care. For the last 14 years the American Association of Colleges of Nursing has provided palliative care education through ELNEC, providing training to more than 17,500 nurses. However, this education needs to be reinforced in clinical settings with structured mentoring of nurses on palliative care, according to Gunten and Ferrell.

An INQRI study, Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice, explored the relationships between quality palliative nursing care delivered in intensive care units and patient and family outcomes. The study also explored how to measure and to improve these outcomes. This interdisciplinary team was led by Lissi Hansen and Richard Mularski.

Stroke Survivors Need Team Approach to Palliative Care

A new scientific statement from the American Heart Association (AHA) recommends that people recovering from a stroke should have a well-coordinated medical team, working in collaboration with the patients and their families, to personalize care, optimize quality of life, and minimize suffering.

The statement provides guidance on how patients and families should work with the stroke team and providers, including nurses, neurologists, neurosurgeons, primary care providers, and therapists, Nurse.com reports.

“The stroke team and its members can manage many of the palliative care problems themselves. It encourages patient independence and informed choices,” Robert Holloway, lead author of the statement, said in a news release

AHA states that stroke survivors and family members should expect health care providers to:

• Discuss preferences, needs, and values as a guide to medical decisions;
• Discuss which aspects of recovery are most important to them;
• Have effective, sensitive discussions about the prognosis, how to deal with physical or mental losses from a stroke and, if necessary, about dying, among other serious topics;
• Provide guidance regarding life-sustaining treatment options. Providers should address pros and cons of CPR, ventilators, feeding tubes, surgery, do-not-resuscitate orders, do-not-intubate orders, and natural feeding;
• Know the best treatment options for common post-stroke symptoms, including pain, other physical symptoms and psychological problems such as depression and anxiety;
• Engage a palliative care specialist if complex issues arise; and
• Help preserve dignity and maximize comfort throughout the course of a stroke, including during the dying process and when nearing death.

Nearly 800,000 stroke and 130,000 stroke-related deaths occur in the U.S. each year, according to the AHA and up to 30 percent of all survivors are permanently disabled. The AHA’s scientific statement is available here.

The INQRI-funded “Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice” explores the relationships between quality palliative nursing care delivered in intensive care units (ICUs) and patient and family outcomes and on how to measure and to improve these outcomes. The purpose of this investigator-initiated study was to examine nursing's specific contributions to quality palliative care provided to patients and their families in the ICU. This interdisciplinary team was led by Lissi Hansen and Richard Mularski.

Providing Palliative Care Training for Providers Can Improve Patient Outcomes

Researchers with Best Practices for End-of-Life Care for Our Nation's Veterans (BEACON) found that providing health care workers with palliative care training led to improved patient outcomes in several areas.

In a study published in the Journal of General Internal Medicine and covered by Fierce Healthcare, researchers conducted a trial intervention at six Veterans Affairs Medical Centers. Training was designed for all hospital providers, and addressed several processes associated with hospice care, including identifying dying patients, delivering the prognosis to patients and families, and applying hospice care best practices to an inpatient environment.

Significant intervention effects were observed for orders for opioid pain medication, antipsychotic medications, death rattle medications, and advance directives. While these changes did improve patient outcomes, the intervention had no significant effect on other areas of treatment, including do-not-resuscitate orders, restraints, intravenous lines, or location of death, according to the study.

Researchers concluded that this type of broadly targeted intervention strategy led to modest but statistically significant changes in several areas, and that if implemented broadly it could improve end-of-life care for thousands of patients in inpatient settings.

In related news, the National Institute of Nursing Research (NINR) recently launched the “Palliative Care: Conversations Matter" campaign to increase the use of palliative care for children with serious illness.

"Initiating palliative care conversations is often hard for both providers and families, especially in the pediatric setting," NINR Director Patricia A. Grady said in a statement. "We hope this campaign and its resources will help ensure that palliative care is considered for every child and family navigating a serious illness."

The campaign's evidence-based materials are designed to help providers initiate palliative care conversations with pediatric patients and their families as soon as possible following diagnosis and to continue these discussions throughout the illness.

The INQRI-funded “Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice” explores the relationships between quality palliative nursing care delivered in intensive care units (ICUs) and patient and family outcomes and on how to measure and to improve these outcomes. The purpose of this investigator-initiated study was to examine nursing's specific contributions to quality palliative care provided to patients and their families in the ICU. This interdisciplinary team was led by Lissi Hansen and Richard Mularski.

Prestigious Grants Awarded to Fomer INQRI Grantee Richard Mularski and INQRI NAC Member Elizabeth McGlynn

The Patient-Centered Outcomes Research Institute (PCORI) today announced 82 new funding awards supporting patient-centered comparative clinical effective research. Among the recipients are former INQRI grantee Richard Mularski and INQRI National Advisory Committee member Elizabeth McGlynn.

Mularski's grant is for a project to establish a foundation that combines an education, advocacy and support group created by and for patients with Chronic Obstructive Pulmonary Disease (COPD) with two federally funded research networks. The COPD Patient-Powered Research Network  will enroll 100,000 people with COPD in a registry to support patient-driven and patient-centered outcomes research.

McGlynn's grant will support a network of four leading health care delivery systems in collaborating with patients, clinicians, and operational leaders to a clinical data research network.The Patient Outcomes Research To Advance Learning (PORTAL) network will create cohorts of: (1) patients with a diagnosis of colorectal cancer; (2) adolescents and adults with severe congenital heart disease (CHD); and (3) adults who are overweight or obese, including those who have prediabetes or diabetes.Those cohorts will inform the PORTAL Network's efforts to advance the nation's ability to answer questions that are important to patients about what works best for whom under what circumstances and increase opportunities to translate research findings back into improvements in the delivery of health care.

Palliative Care Teams Growing in Popularity

An increasing number of hospitals around the country are starting palliative care programs, designed to relieve seriously ill patients’ pain, stress, and symptoms regardless of how long they have to live, according to Kaiser Health News. The Center to Advance Palliative Care at Mount Sinai School of Medicine reports that now more than two-thirds of hospitals with more than 50 beds offer palliative care, compared with one in four in 2000.

While some doctors oppose palliative care because they believe it prevents patients from getting important medical treatment, the programs will likely continue to increase to meet the needs of the aging baby boomers generation, and as hospitals seek to reduce costs and increase value to meet the requirements of the Affordable Care Act. Research has shown that palliative care reduces health care costs though avoiding unnecessary treatment and getting patients out of the hospital more quickly. Researchers have also found that it improves patient satisfaction and lengthens patients’ lives.

The INQRI-funded “Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice” explores the relationships between quality palliative nursing care delivered in intensive care units (ICUs) and patient and family outcomes and on how to measure and to improve these outcomes. The purpose of this investigator-initiated study was to examine nursing's specific contributions to quality palliative care provided to patients and their families in the ICU. This interdisciplinary team was led by  Lissi Hansen and Richard Mularski.

Better Coordinated Care Needed for Patients Suffering from Shortness of Breath Due to Advanced Illness

An American Thoracic Society panel of experts, including INQRI grantee Richard Mularski, MD, is calling for better care for thousands of Americans who suffer severe shortness of breath as a result of advanced lung and heart disease. In the current issue of the Annals of the American Thoracic Society, the panel recommends that patients work with palliative care specialists and interdisciplinary care teams to develop individualized actions plans that can prevent these episodes from turning into emergencies, Medical Xpress reports.

"By the time paramedics arrive, the patients and their caregivers are usually panicked," Mularski told Medical Xpress. "…For patients who don't want breathing tubes or other life-sustaining measures, there are alternative relaxation and breathing techniques and medications that can ease symptoms, but these alternatives only work if they are planned for and practiced before the patient experiences shortness of breath."

The interdisciplinary panel is made up of 27 clinicians, researchers and administrators specializing in pulmonary medicine, critical care, geriatrics, emergency medicine, respiratory care, nursing, medicine and social work.

Mularski’s INQRI research, conducted with Lissi Hansen, PhD, RN,  examined nursing's specific contributions to quality palliative care provided to patients and their families in the ICU.

IHI Webinar: Who’s Conversation Ready? How Health Care Can Respect End-of-Life Wishes - October 24, 2013

The Institute for Health Care Improvement (IHI) is engaged in two initiatives to reduce confusion and improve circumstances surrounding end-of-life care. The Conversation Project is a grassroots effort to encourage discussions regarding end-of-life care with friends and loved ones long before a medical crisis occurs. The second initiative, Conversation Ready, is designed to capture how healthcare organizations can effectively respect and respond to end-of-life care wishes. Ten healthcare organizations have been working with IHI to share and refine their best practices in this area. Their efforts will be shared during the  “Who’s Conversation Ready? How Health Care Can Respect End-of-Life Wishes” webinar on October 24, 2013, 2:00-3:00 p.m. EST. 

The webinar will feature presentations from several of the organizations, including a program that designates a “conversation nurse” to ensure the goals and preferences of patients and families stay at the forefront of end-of-life care discussions, and a program that incorporates these preferences into electronic medical records. Participants will also be able to share what their own organizations are doing around end-of-life care issues. Free registration for the webinar is available by clicking here.

An INQRI study, Nursing's Specific Contributions to Quality Palliative Care within the Context of Interdisciplinary Intensive Care Practice, explored the relationships between quality palliative nursing care delivered in intensive care units (ICUs) and patient and family outcomes. The study also explored how to measure and to improve these outcomes. This interdisciplinary team was led by Lissi Hansen and Richard Mularski.