Caregiver Conundrum: Supporting the Psychosocial Needs of the Cancer Support System
This week, Real World Health Care is delighted to highlight the American Psychosocial Oncology Society (APOS). We spoke with APOS President-Elect Vicki Kennedy, LCSW, executive director of Oncology Strategy & Patient Engagement at Cullari Communications Global. Ms. Kennedy shared insights on how APOS is addressing the psychosocial needs of cancer patients and caregivers alike.
Access to Quality Psychosocial Care
Real World Health Care: Tell us about the overall mission and goals of the American Psychosocial Oncology Society.
Vicki Kennedy: The mission of APOS is simple– APOS aims to advance the science and practice of psychosocial oncology with the idea that we strive for a nation in which all people affected by cancer have access to quality psychological and social care to optimize their quality of life and health outcomes. We believe cancer and the ability to live well, no matter what the outcome of the illness, is much more than the biology of the disease. It is about the psychology and the social supports that impact the entire system around the individual with cancer. If we do not attend to the emotional, social and practical needs of patients with cancer and their families, we have not truly delivered the best cancer care.
Founded in 1986, APOS creates a multidisciplinary forum for the exchange of research and clinical practice expertise among many different types of psychosocial oncology professionals—psychology, social work, psychiatry, physicians, nursing, public health, etc. We focus on both the science and the art of helping people with the emotional side of healing and the integral role of psychosocial health and well-being in oncology treatment and survivorship.
We were saddened at the recent passing of the founder of APOS, Dr. Jimmie Holland, a renowned psychiatrist at Memorial Sloan-Kettering Cancer Center and the ‘grandmother’ of psychosocial oncology. Dr. Holland’s vision was that there would be a professional organization not only committed to bringing together all the disciplines that comprise the cancer care team, but also to advocate that caring for the whole person (and their family) makes a difference to their quality of life, health outcomes and ultimately the cost of health care.
Elevating the Profession and the Needs of Everyone Impacted by Cancer
RWHC: How does APOS address psychosocial care for caregivers of cancer patients?
VK: There are millions of family caregivers caring for someone with cancer today. Caregivers play an increasingly important role in helping their loved ones with the day-to-day demands of facing cancer including how to navigate today’s complex health care system. They provide physical care, emotional support and logistical management, which can place a huge burden on them. It’s important for both researchers and clinicians to work together with patients and their caregivers to gather evidence about these challenges and create solutions that address these pressures and demands.
APOS creates a place where researchers and clinicians come together to discuss and explore this intersection of research and practice. We want to be sure that the interventions and programs being offered in cancer centers, community organizations and private practices where we work are impactful and based on scientific evidence that it helps patients and caregivers to achieve optimal wellness even in the face of sometimes devastating illness. Our goal through education, training and creative partnerships is to ensure that people can find mental health and other support services across the country. This goal is not just because we feel this is the right thing to do; it is deeply rooted in scientific evidence that attending to the distress that patients and caregivers face related to emotional coping, personal relationships, practical and financial worries will lead to better health outcomes. And, if cure is no longer an option, ensuring that patients, caregivers and families receive state-of-the-art physical and emotional support along the journey.
At the APOS annual conference this year in Tucson, researchers and clinicians presented on a host of topics such as caregiver distress; survivorship; management of depression and other psychological trauma; health equity and the unmet needs of diverse populations; etc. We focused on cancer across the lifespan for both patients and caregivers. Throughout the year, we host educational webinars by some of the top experts in the field on a variety of topics as well as we recently launched a Psychosocial Oncology Institute that provides training in psycho-oncology for many disciplines. Finally, APOS has a peer-reviewed, highly esteemed journal called the Journal of Psycho-Oncology where the latest science and information about evidence-based practice is published.
RWHC: What psychosocial challenges are common among caregivers of cancer patients? How can those challenges best be addressed?
VK: The hard part is that many caregivers don’t identify themselves by that term. They’re simply doing what they know to do and don’t imagine that it is a defined role. And yet they are challenged to balance the demands of caring for their loved one who is ill or recovering while caring for themselves, other family members and work or school responsibilities. Caregivers often experience personal distress as they worry about finances and just managing day-to-day life and often don’t pay enough attention to their own health and well-being. It’s common to feel overwhelmed in the role of caregiver and to need education and support to feel more confident and supported in the role, even in terms of logistics such as managing transportation to and from treatments and clinic appointments and making sure the patient takes their medications on time. It can be a heavy load and often caregivers are forgotten in the overall health care system.
These challenges can best be addressed by helping the caregiver know that, as clinicians, we care about their health and well-being in addition to that of the patient. Thanks to years of research and better understanding about the stress of caregiving, we are more attuned to caring for the person who is coming to appointments with patients — the person that patient identifies as the most important to them — and helping that caregiver access available resources to address their emotional and physical concerns. Those resources may come in the form of a social worker or support group, or in referral to a psychosocial specialist or community-based organization. No longer is the patient treated for cancer in a vacuum; we must address the network of people around the patient and especially the person who is assuming much of the responsibility for caring for the patient at home. This is challenging in a busy cancer clinic where the number of patients and caregivers is exponentially growing every day. At APOS, we are working across disciplines to create effective and efficient services and programs that help the system meet these needs, to ensure that cancer treatment continues on a timely, uninterrupted flow, and to help people help themselves throughout the journey.
Just as we now think of the “total patient” in terms of cancer care, we also need to think about the “total family.” Cancer is a family disease and requires commitment to making a difference. It is satisfying to see that the caregiver movement is continuing to grow. There are organizations such as the National Family Caregiving Association and others including APOS, that are standing up for the needs of cancer caregivers. An interesting, award-winning global campaign was recently launched called Embracing Carers that aims at elevating that we in health care as well as society must not ignore the pressures and concerns of millions of family caregivers across the globe.
RWHC: How can the health care industry better integrate to address the special psychosocial needs of both patients and caregivers? What can psychosocial oncology professionals do to ensure that patients and caregivers get what they need?
VK: I believe there has never been a more crucial time in health care to elevate social, emotional, psychological and practical needs of cancer patients and their caregivers as well as the role of the psychosocial oncology professional. In over 35 years’ experience, I have worked from the bedside at a major cancer center, participated in psychosocial research and publications, led program development and clinical management for a global patient advocacy organization and facilitated several non-profit boards in strategic planning and business development. In my current role as a health care consultant, I am keenly aware of the rapidly changing environment in oncology and the pressure points it creates for our patients, our health systems and our very professional survival.
While we are seeing advances in cancer treatment at an unparalleled pace, we as psychosocial oncology professionals are challenged to demonstrate the value we bring not only in improving quality of life and enhancing health outcomes but importantly, in reducing the overall cost of care. Let’s face it—the challenges we are facing a nation in health care are many. Programs and services that do not address the ‘bottom line’ are often cut or seen as ‘nonessential’. We need the data and tools to make the case with our institutions and the health care system to why treating the whole patient (and family) is a quintessential part of value-based, personalized cancer care.
We must continue to elevate the voice of the patient AND caregiver to ensure that cancer care attends to the whole person especially in the vital conversations that are happening in health care right now. We can help patients and caregivers transform their cancer experience and survivorship and find optimal health and well-being no matter what the outcome of the disease. We can make it possible for patients to receive the optimal benefit from outstanding, albeit increasingly complex, cancer treatments. In the words of our founder, Dr. Jimmie Holland, it is caring for the ‘human side of cancer’ that defines the highest quality cancer care.
A Message from Our Sponsor
As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.
In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).