Peggy Maguire, President, Cambia Health Foundation
Senior Vice President, Palliative Care Solutions, Cambia Health Solutions
Cambia Health Foundation, the corporate foundation of Cambia Health Solutions, purposefully invests in health care system transformation, making the journey more person-focused and economically sustainable from birth to natural completion of life. Through our signature program, Sojourns®, we invest in palliative care to help people with serious illness and their caregivers live as well as possible for as long as possible.
Palliative care is specialized medical care for people living with serious illness. The focus is on providing relief from the symptoms and stress of a serious illness with the goal of improving the quality of life for both the patient and the family. We selected palliative care because, when provided alongside curative treatment at the time of diagnosis, it changes the way people with serious illness and their caregivers experience the health care system. By focusing on what matters to people instead of what is the matter with them, the experience is inherently more personalized and compassionate.
Since 2007, Cambia Health Foundation has invested more than $44 million to advance access, awareness and quality of palliative care across the nation. Our goal is that every person with a serious illness has access to high quality palliative care—alongside curative care—in whatever setting is right for them, whether that is in the hospital, in the home, or in the community. We also want to ensure that caregivers feel included, honored, and respected because we know that serious illness is more than a medical issue; it is a human issue that impacts the people who matter most to the seriously ill or injured person and the relationships between them.
The impact of Coronavirus (COVID-19) has been devasting to patients, families, and health care professionals. Hospitals, especially in rural areas, are overwhelmed. Shortages of masks, gloves and other personal protective equipment have left thousands at an increased risk. In some parts of the country, medical professionals, first-responders and caregivers are overworked and overwhelmed as they attempt to meet the needs of thousands of terribly ill patients suffering in isolation without access or support from loved ones. In addition, many families and patients are navigating serious illness or end of life issues without adequate preparation or planning around what matters to them when faced with questions of care.
As a result of the pandemic, an awareness of and demand for palliative care has never been greater. In a recent article in the Wall Street Journal, “Coronavirus Crisis Drives Demand for Palliative Care,” a hotline setup by Mount Sinai Hospital in New York City to support health workers during this crisis, identified that many people needed guidelines and prompts for conversations with patients and their loved ones.
“The inquiries reflect the need for clinicians to have empathetic conversations with patients and families about the prospects for survival, the goals of treatment, and how to comfort or say goodbye to loved ones in isolation. Such services are especially vital, some hospital leaders say, because coronavirus patients are treated away from family or other support systems,” (Armour 2020).
While access to specialty palliative care teams is available in most larger hospitals, the pandemic has highlighted the need for primary palliative care, especially in community-based or long-term care facilities. During this unprecedented crisis, to, it is essential to develop tools, training and resources that enable primary palliative care so that all clinicians working on the frontlines of COVID-19 have the resources they need to reach the largest numbers of patients and families in need and to apply key palliative care skills, including:
- Communication Strategies – Conversations with patients and families, which are often happening now over the phone, should establish a shared understanding of the patient’s condition, treatment course and choices, and the expected long-term outcomes.
- Treat Total Pain – Through a holistic, person-centered approach to symptom assessment and management, providers need to establish patients’ total pain, which also includes psychological, social, emotional, and spiritual components. In some cases, it may also involve identifying the best ways to achieve healing when a cure is no longer possible.
- Care for Family Unit – Palliative care is rooted in the principle that the family, including the persons care team, is the unit of care. Because COVID-19 is highly contagious, restricted visitation from friends and family members produces untold stress for patients who are without emotional support and families unable to see or help loved ones. It also causes moral injury and distress for clinicians who care for patients under heart-wrenching circumstances. Technology like tablets and computers help people in isolation communicate with one another and should be made available to patients and families.
In addition to expanding access to palliative care resources and training within the health care community, social distancing and stay at home orders will require the accelerated implementation of solutions like telehealth and increased behavioral health support. Using a variety of electronic and telecommunications technologies, providers can deliver distance medical and behavioral health care services that support and monitor patients recovering from COVID-19 at home while safely providing many other high-risk individuals with symptom assessment, management and relief from pre-existing serious illnesses.
Finally, this pandemic has brought on unique personal and professional challenges to health care providers who may be called to operate outside their specialty, work under adverse conditions, and care for colleagues and loved ones who are critically ill. To promote resiliency, there is an immense need to provide clinicians with self-care resources and opportunities to connect virtually with field leaders and other clinicians to exchange stories and support one another.
The extraordinary challenges of this pandemic are unprecedented. However, in challenge, there is opportunity. Our ability to come together in response to the immediate health crisis presents a unique long-term opportunity to systematically address gaps and inequities exposed by this crisis for long-term health transformation.
Palliative care is key to health care transformation. By recognizing that every person matters and every moment matters, palliative care addresses health disparities by providing personalized care to each and every individual according to their unique goals, values and preferences regarding their health and quality of life. Our goal is to increase access to palliative care so that ALL people impacted by COVID-19 and other illnesses receive personalized care that is aligned to their wishes.
Visit the Cambia Health Foundation website where these resources are also listed.
Resources and Communications Tools
We are seeing many new advance care planning and communication tools emerge from this crisis. Below is a list of resources to help clinicians, patients and caregivers have important conversations.
- Center to Advance Palliative Care COVID-19 Communications Toolkit
- “Three Good Things for Caregivers” Video from VitalTALK
- Decompress Self-Care Podcast for Caregivers
- Clinician Resilience Resources from the National Academy of Sciences
- Resilience & Well-Being Resources from the American Academy of Hospice & Palliative Medicine
- National Patient Advocate Foundation COVID-19 Caregiver Resources Center
- Patient Advocate Foundation Webinar with VitalTALK
- Communications Toolkit from the Massachusetts Serious Illness Coalition
- Archangels “Thank You For Being A Caregiver” Campaign