Advocacy in health care, especially for those with mental health issues or who live alone without immediate family, is critical. The need for coordinated, integrated care is becoming a significant and recognized issue.
In today’s culture, we are at the crossroads of a public policy and cultural paradigm shift in health care. Two major assumptions are changing the way professional advisors approach solutions to their clients’ needs for quality care in aging. The first major hurdle
is the American health industry. While changes are ongoing with the advent of the Affordable Care Act, many people still find that their mental health needs are treated separately from their physical health needs.
The second layer of complexity is that our culture is shifting away from a multigenerational caregiving approach that has long been a cornerstone of inter-familial care. Within this multigenerational approach, older people have primarily relied upon immediate family members to provide a support system for their health care needs. However, for those who find themselves living alone and without immediate family, that support system must be replaced. This article discusses the current state of our disparate health treatment approach, the decreasing likelihood of immediate family caregivers, and the options available for those in need of care.
A Fragmented Treatment System
In 2006, a report issued by Joe Parks through the National Association of State Mental Health Program Directors cited research showing that adults with serious mental illness die, on average, twenty-five years earlier than the general population and that the rates of illness and death are rising for this population. This mortality among people with mental illness can be explained by their disproportionately high rates of mortality from potentially preventable conditions, including cardiovascular and pulmonary disease, that are among the leading causes of death in the general population. So, those with mental illness are much less likely to care for their physical illnesses. People with mental illness often have higher rates of modifiable or potentially manageable risk factors for their conditions, such as smoking and obesity; they experience higher rates of homelessness, poverty, and other causes of vulnerability; and they face symptoms associated with mental illness, such as disorganized thoughts and decreased motivation that impair amenability with health care needs and self-care.
An additional concern is that co-occurring substance abuse disorders are prevalent among individuals with mental illness. But despite the high rate of substance abuse comorbidities—medical conditions that occur simultaneously—among people with mental illness, the mental health and substance abuse systems are often entirely separate, and both are segregated from the physical health system. This fragmentation of the health care system can lead to inappropriate, redundant care, disjointed care, gaps in care, and can result in increased health-care costs.
In 2001, the World Health Organization’s World Health Report called for the integration of mental health into primary care, acknowledging the burden of mental, neurological, and substance abuse disorders globally, the lack of specialized healthcare providers to meet treatment needs, and the fact that many people seek treatment for these disorders in primary care.
Even when individuals with behavior health problems get screened for other medical conditions and referred for care, obtaining the recommended follow-up services can be extremely challenging. People with serious behavioral health conditions often lack trust in
professionals and agencies. Also, by the nature of their disorders, they may find the task of seeking medical care overwhelming or frightening. Further, people with chronic mental illness can be poor historians of their own health and unable to provide information that
medical professionals need to diagnose their problems.
A Holistic Integration of Physical and Mental Health Care Coordination
The foundation of integrated care is a holistic view of the individual and personal health as complex, integrated systems. Integrated care must then begin with an assessment of conditions and/or the risk of developing conditions in addition to the ones patients present for. This means the adoption by primary healthcare providers of tools to screen for behavioral healthcare needs. Today, it is more common for primary care providers (PCPs) to screen for behavioral health needs than for behavioral health-care providers to screen for physical health needs. Integrated care lends itself to holistic management of exposure to risk, the delivery of preventative interventions, and the treatment of symptomatic disease across the lifespan.Care coordination and integration has demonstrated value in removing barriers to effective management of mental health conditions. This includes care management with tracking and monitoring by RNs, procedures to encourage medication adherence, and linking of patients to community-based health professionals other than physicians, including pharmacists.
A 2006 study by Eric A. Coleman, M.D., which addresses the transition of care between different health care settings and the risk involved in such transitions, demonstrated RN care coordination of patients sixty-five and older living in the community also resulted in improved quality of care and cost savings. The main components of the coordination included medication self-management, a patient-centered record, primary care and specialist follow up, and patient education of warning signs and symptoms indicative of a worsening condition. Participants in the study reported increased confidence in the ability to self-manage their care. The findings demonstrated that care coordination improved the quality of care and reduced costs, while ensuring the safety of older adults in need of this kind of care.
A Cultural Challenge
An additional challenge is now presenting itself in the American culture. Over the last century, medical advances have lengthened the average life span by nearly two years every decade. The average American can expect to live to the age of eighty. Concurrently, the country has seen a dramatic downturn in family size. One effect of these changes is that people will routinely reach old age with very few, if any, immediate family members. This is problematic because care for those who are older and/or disabled in the U.S. remains with immediate family members.
It is unknown how many Americans living alone happen to be sick or disabled, but hospital discharge planners and home health care providers state that they service a growing number of single people who have no default or immediate family caretakers. Recent predictions have shown a trend of older generations increasing in single person households, and while there are some federal programs to help them age in place, resources are limited for those living alone who require more advanced caregiving.
Many who live alone rely on what anthropologists have termed “chosen family”—people within one’s network who rely on one another as resources for emotional, physical, and financial support. Chosen families have drawbacks, however. They are at a significant
disadvantage in terms of care-giving burdens because the entire network is often comprised of individuals who are in the same age group. This is problematic because aging policy in the U.S. assumes the existence of a multigenerational network of support. Eighty percent of all long-term care is provided by informal, unpaid caregivers who are most often spouses or younger relatives. A 2009 study by the National Alliance for Caregiving and AARP, showed that relatives comprise 9 percent of all unpaid caregivers for individuals fifty years of age and older, and the average age of caregivers for individuals seventy-five and older is fifty-one. For those whose chosen family includes only a single generation, its members will age at the same time, resulting in overlapping caregiving responsibilities.
When it comes to healthcare, listing an emergency contact person can be a tough question for anyone without a spouse, partner, or child. For single older adults, it can be one of the most difficult questions to answer due to their lack of immediate caregivers, such as a family member or close relative. People with no family members in charge worry about who might be around to sit in a waiting room, argue with the insurance company, and see that medications are dispensed regularly and correctly. To be sure, having a spouse or grown children is not always the best solution. However, people who live alone without the obvious next of kin for those emergency contact forms must rely on patchwork support from professionals and friends, or end up as their own advocates at a time when they are particularly vulnerable.
Advances in medical technology have greatly increased the likelihood that individuals will experience some period of incapacity prior to death, making some type of advocate, whether durable powers of attorney or advance directives. For those who are incapable of
expressing their desires regarding medical care, these essential documents and advocation help to ensure that their wishes are followed. In addition, they can appoint a surrogate to act on their behalf in the event of incapacity, designate a guardian, or direct the terms of end-of-life care.
The Need for Advocacy
The advocacy workforce in behavioral health settings includes professionals such as nurses and licensed clinical social workers, as well as paraprofessionals. The role of advocates may be as simple as assisting individuals with behavioral health conditions in seeking medical help, or as sophisticated as direct interaction with medical professionals to advocate for a certain medical procedure or reconcile medications. Their role also involves promoting patient engagement to help achieve better-integrated, more holistic care. Whatever the credentials, effective advocates must have the ability to establish a trusting relationship with their clients. In addition, the relationships they establish with providers can foster a culture of coordination and integration between physical and behavioral health professionals.
Health advocacy services should include comprehensive care management; care coordination and health promotion, comprehensive transitional care, patient and family support, referral to community and social support services, and the use of health information technology to support these services. The idea is that health advocates connect, coordinate, and integrate the many services and supports, including primary healthcare, behavioral healthcare, acute and long-term services, and family and community-based services, that patients with chronic and often complex conditions need.
Cost Concerns
A December 2008 study by the McKinsey Global Institutes of McKinsey and Company noted that the U.S. spends more on health care than other industrialized nations even when adjusting for relative wealth. The study went on to note that this pattern occurs despite the fact that the prevalence of many diseases is lower in the U.S. than in other areas.
Care coordination has the potential to reduce cost and improve outcomes for all populations in all health care settings. The most impressive outcomes occur in high-risk populations whose complex health issues involve costly treatments and repeated hospitalizations. On average, patient costs of those with uncoordinated care were 75 percent higher than matched patients whose care was coordinated. Additional studies suggest that enhanced care coordination could reduce 35 percent of costs. Various care delivery models, including nursing-led models, have been evaluated in relation to improved clinical and financial outcomes. In general, care coordination results in better care at lower cost, particularly for populations with multiple health and social needs.
Conclusion
For professional advisors, two systems impacting care and health are adding tremendous complexity to our clients’ lives. First is the fragmented practice of treating mental and physical health independently. Second is the continuing societal trend of “singleness,” resulting in a lack of traditional immediate family caregivers. For those clients with multiple physician providers, care coordination is a must. For those clients with the additional complexity of no “default” caregivers, advocacy and care management is critical. Several options exist, ranging from private-pay RN advocates to local aging agency volunteers. Advocacy and care management are imperative for anyone in need of these services. CSAs and other professionals who work with older adults should know the options in their areas and be prepared to advise their clients who need these solutions. •CSA
Mindy Jones is the founder and managing principal at Pyxis Care Management. Located in Texas, its mission is to fill the need for holistic advocacy and guardianship services. Contact her at mljones@pyxiscare.com, 817-591-1592. Or visit her website at www.pyxiscare.com.
Advocacy and Coordination of Care for Older Adults was recently published in the Fall 2014 edition of the CSA Journal.
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