Care-partner burnout is a significant unmet need.
Palliative care incorporates management of interpersonal issues, such as care-partner burnout; for Mrs. F, her care-partner burnout was unaddressed. Studies suggest that care partners of individuals with IBM, as well as other inflammatory myopathies, face significant burden.15 Like up to half of family care partners, Mrs. F began to experience significant depression and anxiety, which went unaddressed as her husband’s health issues took the spotlight.16–18
Physicians have the opportunity to support care partners and minimize some of the burden they experience throughout the journey of illness by providing excellent communication, facilitating advance care planning and decision making, facilitating home care/respite care and providing emotional support.16 Support groups may also be helpful for the patient and family.
Multidisciplinary care is essential in complex illness management.
The support of social workers is often needed to navigate the complexity of the healthcare system and obtain needed resources. Without these structural supports, individuals like Mr. F are often left to ascertain which tools and equipment are needed to manage their mobility deficits without professional guidance, leading to ineffective and expensive efforts while potentially worsening deficits.
Individuals affected by IBM also face significant economic burden, including costs related to specialized equipment, home modifications and paid professional help.19 Prompt referral to social work can ease the burden that individuals with IBM and their families face in caring for their disease. In fact, a recent randomized controlled trial found that a nursing and social work palliative care telehealth team improved quality of life for individuals with serious chronic illness.20
Learn from Other Specialties
Understanding when to refer patients to palliative care specialists can be beneficial, helping patients with IBM receive appropriate care. Prior studies have found specialty palliative care is underutilized for patients with IBM admitted to the hospital, resulting in a missed opportunity to provide multidisciplinary quality care.21
Certain illness characteristics and conditions have been identified as triggers to consult specialty palliative care for individuals with severe neurologic disease.22 In motor-neuron disease, difficulties with respiration or eating, a rapid decline in mobility, weight loss and psychosocial distress have been identified as possible triggers for palliative care referrals.23 Using similar triggers to automate palliative care referral for patients with IBM may facilitate access to services that patients may not encounter otherwise.
Given that aspiration and respiratory failure are common causes of morbidity in patients with IBM, recurrent aspirations could serve as a sign of disease progression. Similarly, a change in physical status, such as worsening weakness or new dependence on an assistive device, may be another trigger. This should signal a need for more focused interventions and consideration for referral to specialist palliative care.
