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.

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.