In today’s cross-post from the Prepared Patient blog, we are pleased to present a thought-provoking article by Jessie Gruman, an author, advocate, and founder of the Center for Advancing Health. Ms. Gruman has been diagnosed with five life-threatening illnesses and writes about the need for patient engagement in health care. In this post, she conveys the challenges of caregiving and the potential benefits and pitfalls of using technology to help.
Given our interest in both technology that supports better care for older adults and family caregiving issues—including supporting an Institute of Medicine effort to produce a comprehensive study on the topic—we are pleased to present Ms. Gruman’s piece, “Health Is Difficult When Solo: Will More e-Caregivers Help?” We hope you will comment and share your experiences, as well as tips for what you’ve found helpful.—Marcus Escobedo, program officer, the John A. Hartford Foundation
Last week, both my husband and I came away from a conversation with my doctor positive that we understood my new weight-gain plan. Funny thing: Each of us recalled a different plan. I am always struck by how our memories of the words spoken by my doctor can be so dissimilar. No, not all of them, but enough of them to be wary of going to any appointment without a backup listener.
Having a trusted friend or family member with you when you go see your clinician is only one small part of what it takes to find and use health care. Advances in medicine and changes in the process of health care delivery now provide us with more options in how we can prevent, treat and manage our health concerns. Consider what is involved in preparing for and recovering from bariatric surgery or joint replacement surgery ... the day-to-day care for rheumatoid arthritis or kidney failure ... the chores associated with compensating for reduced mobility, hearing and seeing, incontinence and memory loss.
The sheer amount of coordination required to take full advantage of the health care services and tools associated with each of these conditions—signing up for the health and pharmacy benefit plans that meet our needs if we have a choice; finding the right doctors; ensuring communication among them; caring for ourselves; scheduling the consultations; obtaining the diagnostic and monitoring tests and appointments; getting to the appointments; negotiating and understanding the treatment and self-care plans; following through on those plans; the diet; the exercise; the medications; the symptom control; etc.—is a lot of painstaking, hands-on work, especially for those with ongoing chronic conditions.
So it was interesting to learn recently that 39 percent of us are providing care for an ill family member or friend as reported in a survey from the Pew Research Center and the California Health Care Foundation. This number is up from 30 percent in 2010.
On one hand, you think, "Jeepers! That's heartening. All those people helping each other out!" On the other hand, between the people taking care of their kids' health and those caring for adult friends and family members—young, middle-aged and old—whose health is in some way compromised, that number is probably conservative, especially given the increased complexity of health care that makes assistance from others important, even for the energetic and feisty among us.
And so it was also heartening to be reminded by this new study that caregivers are going online to get help (in numbers significantly greater than non-caregivers), ranging from gathering information on diagnoses and drugs to getting support from friends, family and others with the same condition. These findings reinforce those of a 2011 survey fielded by the National Alliance for Caregiving that detailed the growing adoption of a range of e-technologies—including the Internet—to buttress the effectiveness of caregivers' efforts.
The use of e-resources by family caregivers extends their reach, not only because of the amount of useful information and tools (like apps) that can be found to help in decisions about self care, but also because increasingly, the most efficient access to some vital aspects of health care is migrating online. Think about what it takes to choose the best Medicare Part D (pharmacy) plan without access to the array of online choices that can be customized to your needs and preferences, or to quickly find out when you had your last tetanus shot without your electronic health record, or to schedule an appointment without being able to link to your clinicians' offices.
The growing incentives for patients and caregivers to make use of online services and resources present formidable challenges to many who, for whatever reasons – age, income, cognitive status, geographic location, literacy—do not venture online or who lack the confidence and skills to fulfill them. They are at risk of being left behind. Simultaneously, however, the nature of the technology allows for a son in Buffalo to coordinate his mom's cardiology care in Biloxi and for your cousin in Baltimore to work with your grandfather to choose a Medicare health plan in Boise.
This is how we move forward, I guess: The new challenges we face in finding and making good use of our health care are met with new solutions—sometimes partially, sometimes fully, almost always adopted by different groups and institutions at their own pace. While the daily challenges that now demand time and effort by so many people caring for loved ones will only very modestly be met by online/technology solutions, those solutions nevertheless will help ease the burden felt by many.
If there is one thing of which I am certain, it is that even I, with all my experience using health care, all my education, resources, connections and online search savvy, really struggle to make good use of my care when I have had to do it alone, especially when I'm fatigued and in pain. Any and all approaches that make it easier for my friends and family to help me—whether they are online, at home or right there in the doctor's office with me—are both needed and welcome.