Longitudinal transdisciplinary Neuropalliative care Support for Patients with Severe Stroke and their Families

PROJECT SUMMARY/ABSTRACT: Stroke is not just an event but a chronic illness with tremendous impact. Every year, 5 million people die of stroke, and another 5 million are left with disabling impairments of cognitive and physical function. Progress in the acute treatment of stroke has reduced the number of patients who die but

also increased the number of survivors, who along with their family members are faced with many challenges over the long term. These challenges range from cognitive and physical impairment to psychosocial and existential suffering. One third of stroke survivors develop cognitive impairment due to vascular contributions to

cognitive impairment & dementia (VCID), which may worsen over time due to concomitant Alzheimer disease and related dementia (ADRD) or immunological processes triggered by the stroke itself. Post-stroke cognitive impairment reduces a patient’s ability to participate in rehabilitation and increases caregiver burden. Over 1 in 3

stroke survivors suffer advanced symptoms of pain, anxiety and depression, and these symptoms can become more frequent or intense in those who are actively dying. As families face immense grief and prognostic uncertainty, clinicians need to help them maintain hope but also understand the severity of the disease, so that

they can effectively discuss treatment options across the range of possible outcomes. About 1 in 3 patients die in the hospital, most of them after a decision to withdraw life-sustaining treatments, such as mechanical ventilation, artificial nutrition, and hydration. For those who survive a severe stroke, most patients and families

face a completely different reality with new social roles, high symptom burden, and frequent rehospitalization. Therefore, we urgently need interventions to support patients and families as they grapple with often conflicting realities of recovery, grief, adaptation and treatment decisions that continue for months or even years after the

stroke. We propose a randomized clinical trial of a “Longitudinal Transdisciplinary Neuropalliative Care Support” (Lotus) team that follows patients and their families from early in their hospital course through six months and provides targeted support as well as helping them ensure that treatment is line with their values. This team is led

by a specially trained Lotus nurse who works with a team of mental health, spiritual care, social work and neuropalliative care providers, who will support the patient and family through a combination of in-person and tele-health appointments. The team will implement complementary activities to enhance palliative care

integration into stroke care: awareness, assistance, adjustment, acceptance and alignment. We hypothesize that this intervention compared to usual care will (1) improve psychological outcomes such as depression or anxiety for patients and families and (2) increase ‘hospital-free days’ for patients and improve goal concordance,

meaning that patients will be more likely to receive the type of medical care that is consistent with their personal goals and preferences. Finally, we will (3) conduct a mixed methods evaluation to explore barriers and facilitators to future implementation and dissemination.