This month we celebrate family caregivers. The 2018 theme for National Family Caregivers Month is Supercharge Your Caregiving. President Clinton signed the first Presidential Proclamation in 1997 and every president since that time has followed his lead by issuing an annual proclamation to recognize caregivers each November, for an entire month. For this year, President Donald J. Trump says “We recognize the challenges of caregiving and celebrate the joys of bringing support and comfort to a loved one. We express our gratitude to them for the work they do daily to ensure their loved ones are able to live in their homes and communities.”
Nurses play an important role in patient care including caregivers, and this role of care will expand with the increasing number of patients needing this care. Nurses are also well-suited to assess, educate, and support family caregivers who care for their loved ones, as well as contribute to evidence-based nursing practice to improve the quality of care for family caregivers. Nurses serve as clinicians, educators, counselors, and researchers who provide support and conduct research that addresses family caregivers’ ability to care for their loved ones.
Demands on caregivers are currently growing as the health care environment changes. Additionally, the number of people with dementia and multiple chronic conditions is rising. Family caregivers can be overwhelmed by multiple responsibilities and seek guidance for taking on the responsibilities of caring and planning for a loved one. Nurses are well positioned to help family caregivers to become more confident and competent providers as they engage in the health care process. Nurses are also an excellent resource for families who need support, guidance, and encouragement. Nurses can connect family caregivers with key resources to simplify the care planning process.
Here are some useful resources to help family caregivers address and cope with the challenges of caring for a loved one.
1. Caregiver Action Network
The Caregiver Action Network (CAN) is the leading family caregiver organization to improve the quality of life for Americans who care for loved ones with chronic conditions, disabilities, diseases, or the frailties of old age. CAN is a nonprofit organization providing education, peer support, and resources to family caregivers across the country free of charge.
This is the leading online destination for family caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. It offers helpful content, advice from leading experts, a supportive community of caregivers, and a comprehensive directory of eldercare services.
3. National Transitions of Care Coalition
The National Transitions of Care Coalition (NTOCC) is a nonprofit organization addressing the issues and concerns related to transitions of care. The NTOCC provides tools to help health care professionals, patients, and caregivers establish safer transitions; and resources for practitioners and policymakers to improve transitions throughout the health care system. Most of these resources are available free of charge.
From ultrasound powered by artificial intelligence to image-sharing tools on the cloud, technology advancements are improving the quality of health care at an unprecedented rate. Yet, when it comes to one of the most universal and compelling health care needs – a smooth and successful pregnancy and childbirth – we still have a long way to go.
Every day, approximately 800 women die from preventable causes related to pregnancy and childbirth. The United States accounts for the highest maternal death rate in the developed world, and the number has been steadily increasing over the last two decades. What should be a moment of joy and celebration can become an unbearable tragedy.
The operative word in these troubling statistics is “preventable.” And one of the keys to avoiding these tragedies is more closely monitoring the health of the mom and baby. The idea that you can’t manage what you don’t measure rings particularly true in pregnancy and childbirth.
Fetal and maternal health monitors provide invaluable data that can support clinicians and health care providers as they need to make quick and accurate clinical assessments throughout a pregnancy and during labor and delivery. However, these health care needs are at odds with recent trends in labor preferences.
For example, increasingly, expectant mothers want to take a more active role in their birth plans, not simply turn over the reins to the care staff. A growing trend among these patients is the desire for more mobility during labor.
The ability to get out of bed, walk around and even bathe can improve their overall comfort and experience – and may help decrease the length of labor. Not only do patients feel a sense of empowerment by choosing their birthing process, increased mobility may also decrease the length of labor.
During labor, women are often entangled in a sea of cords and monitors, significantly limiting their movement. Fortunately, expectant moms now have the option for cordless monitors that replaces the traditional, cumbersome belts, cables to support the traditional transducer system.
But as with many things, there’s still a role for “traditional” practices – including, in the case of childbirth, more movement and engagement on the part of the mother. Pairing this focus on the patient with advanced technology, we can achieve the best of both worlds: safer, smoother births with lower maternal-infant mortality.
The University of Texas at Arlington (UTA) College of Nursing and Health Innovation recently added five new nursing graduate degrees to its online catalog for the spring semester. The new online programs include a doctor of nursing practice (DNP) degree and four nurse practitioner master’s degrees in pediatric primary care, pediatric acute care, adult gerontology acute care, and adult gerontology primary care.
After drastically increased enrollment from UTA’s master of science in nursing (MSN) education and nursing administration courses were offered in an online format, the university decided to further expand its online nursing degrees. The additional online degrees will provide advanced nursing education access to students who are unable to attend on-campus courses.
The new online DNP program provides advanced practice registered nurses (APRNs) with the information, knowledge, and skills to transform healthcare from the local to global level. With an online learning system that doesn’t require specific class times, the program’s goal is to provide the rigorous standards of a DNP program in a flexible and affordable way for professional working nurses.
Adding new online programs supports UTA’s mission to improve health and human condition by making advanced nursing programs more available so that UTA students can have a broader impact on the health and lives of people in their own state, country, and around the world. To learn more about UTA’s new online nursing programs, visit TheShorthorn.com.
Our Nurse of the Week is Loretta Bledsoe, a critical care nurse from Longwood, FL who helped deliver a 2-pound, 4-ounce baby on her flight home to Orlando before the plane made an emergency landing in Charleston.
Bledsoe was an hour into her flight from Philadelphia when the flight attendant made an announcement about a medical emergency and asked if any doctors or nurses were on board. A nurse for more than 40 years with a range of experience from intensive-care to pediatrics, Bledsoe was well qualified to help deliver a baby. She turned on her call light to let the flight attendant know she could help and was brought to the front of the plane where a young woman was hunched over in a window seat.
The pregnant woman didn’t look very far along but said that her water had broken and minutes later Bledsoe was holding a tiny baby boy in her arms. Another passenger, an emergency-room doctor from Pennsylvania, helped stabilize the mother while the flight attendants and pilot planned for an emergency landing to get the new baby and his parents to a local hospital.
Surprisingly, the mom and dad had already added ‘Jet’ to their list of baby names and they decided it was the perfect fit after baby Jet was born mid-flight. Bledsoe later found out that the mom whose baby she had delivered was also a nurse. Talking about the events of that day, Bledsoe told OrlandoSentinel.com, “But you always use your nursing background, always. It’s like riding a bike: You never forget.”
Bledsoe has spoken to the mother a few times since about updates that the baby is doing much better. She hopes to meet the family again when they return home to Central Florida. To learn more about Bledsoe’s courageous mid-flight baby delivery, you can view her interview with OrlandoSentinel.com.
I was recently asked by a colleague who was preparing a presentation about ethical issues in pediatrics to share with him my thoughts about this topic, in light of my experience as a pediatric nurse. My recounting grew into an essay about the joys and challenges of caring for children and their families at some of the most vulnerable moments of their lives.
Easy to Forget
There’s something I said regularly during my years at the bedside. I remember saying it one night when a neurosurgeon and I were using a syringe and scalp vein needle to draw 30 milliliters of crankcase oil-colored spinal fluid from the brain of a tiny baby. I said, “You know, it’s easy to forget that not everybody’s job involves doing stuff like this.” I heard that sentiment many times from the other side as well: I worked in a NICU at a regional referral hospital, and grandparents would come from outstate to visit their newly born, seriously fragile grandchildren. They would say, “We never knew there was a place like this. And we wish we didn’t know.”
In order to continue to function in the profession we have chosen, we have to become accustomed, inured, some might say desensitized, to regularly doing extreme things, including things that cause pain to the people we are trying to help. There’s a subset of caregivers, especially if they don’t have other, unrelated but strong, influences and activities in their lives outside of work, who lose track of this discrepancy, to the point where they aren’t able to articulate the extremity of what we do – it’s like asking a fish about water. But in the NICU where I worked for 25 years, one of the reasons why we survived and why I loved so many of my coworkers is because they had lives outside of work – families (we helped each other raise our children), crafts (many knitters, scrapbookers, quilters, all giving each other ideas), culture (many musicians, theatergoers, movie fans), and literature (we had a lending library and an informal book club during breaks). They were whole, broad people, with a particular skill that society finds useful but takes a great personal toll.
A Family Affair
Since pediatric patients (except for some older teenagers) can’t act independently, pediatric health care is by necessity a family affair. So another aspect of peds is that the emphasis on the family often gets extended to staffs and caregivers as well. Staffs on pediatric units and in clinics are more likely than on adult units to be seen through the metaphor of a family (sometimes overtly in the cultural language of the unit, sometimes covertly by leaders who try to re-create the nuclear family among their staff). This can lead to all kinds of problems with boundary issues, stress for staff members for whom family is a negative or even traumatic construct, and extra mental work for people who are just trying to manage their intra- and interdisciplinary roles, let alone sibling rivalry and funny uncles.
When Errors Happen in Pediatrics (or, When Bad Things Happen to Helpless People)
Errors, especially those that reach the patient, and most especially those that cause demonstrable harm, are traumatic for everyone whenever they occur. But in pediatrics, errors are especially devastating because most pediatric patients can’t speak for themselves, and their families are left with the added burden of feeling that they failed in their duty to protect their children from harm.
The “brand” of pediatric health care is full of very visual stories about miracles – tiny premature babies with tubes and wires all over their bodies who survive against all odds; bald kids with cancer who grow up to be physics majors; toddlers missing a limb who are learning to walk with prosthetic legs. The reality is that errors of commission and omission occur in pediatric health care, but the backdrop of the narrative of miracles makes the errors that do happen more salient and less understandable and forgivable – it’s regarded by some as if the person who made the error is ignoring God’s will, or even working against God’s will.
Pediatric Weight Differentials – Source of Error
In adult medicine it’s possible for one patient to weigh twice as much as another. But in a pediatric unit, it’s not unlikely for a nurse to have two patients assigned to her or him, one weighing 4 pounds (e.g., a post-op premie or a newborn with failure to thrive) and one weighing 400 pounds (e.g., a morbidly obese teenager with asthma). When you have weight differentials this wide, the potential for overdosing, underdosing, and errors in prescribing, dispensing, and administering medications is huge. Computerized medication management systems help minimize the chance of error, but the overarching issue remains.
There’s a useful teaching question for health care professions students: What is the correct dose of most medications? The answer is: one. One tablet, one capsule, one teaspoon, one milliliter, one suppository, one spray. Drug companies create their products this way, for ease of use and for safety, and for full-size human beings, it works quite well. However, in pediatrics, all bets are off.
Patient-Controlled Analgesia in Pediatrics
This topic is symbolic of the unique world of peds. When hospitalized grownups have pain, they may be provided with IV pumps that let them, within pre-programmed safe parameters, give themselves bumps of pain medication. Pediatric patients younger than about 15 can’t reliably manage this process themselves. But since the pre-programmed pumps are a safer, easier, and more sterile way to manage pain using IV meds, many pediatric patients, including infants in NICUs, now have the pumps, with the boluses of medications given by nurses, often as an adjunct to continuous infusions of those same medications. There are errors associated with these pumps, so that they may be seen as less safe than the former, intermittent, one-shot-at-a-time process, but actually the errors are fewer now, and overmedication is no more frequent. This pump technology is still resisted by some pediatric health care professionals.
Just Say No: Preventing Narcotic Addiction in Small Children
When I started my career in pediatrics in 1967, the received wisdom was that the few premature babies that survived did not experience pain. It wasn’t unusual for a baby to have major thoracic or abdominal surgery and receive no post-op pain medication at all. We thought we were saving lives, because pain medications cause hypotension. In the rest of pediatrics, the word was that, since toddlers and young children snapped back from surgeries and fractures more quickly than grownups (which was observably true), they didn’t need pain medication for such a brief span of time. For teenagers, our goal was to keep these kids from learning that taking drugs can feel good. The overarching goal was to prevent drug addiction, and if the patients had uncontrolled pain, the trade-off was worth it.
We have come a long way since then, but those attitudes and values remain, especially in some health care professionals of my generation.
Reluctance to Refer to Pain Management and Palliative Care Services
In many in-patient settings, including pediatrics, the people (especially the physicians) who are the experts in pain management are the same people who are experts in hospice and palliative care. They also tend to be people who are open to Complementary and Alternative therapies. They may dress differently than mainstream physicians and their body language and proxemics are often different than mainstream physicians. Their offices may be in the basement of the hospital or even off-site. They may well be the only physicians who attend presentations about caregiver self-care, even though they are the ones who may need it the least. And physicians who are allergic to hospice and palliative care for children, seeing it as admitting failure, may view a referral to the Pain and Palliative Care Service as a referral to a service that is a cultural outlier: not scientific, not medical, not one of us. The patients and their families, as well as the nurses who are caring for these children with poorly controlled pain, all suffer from this reluctance to refer.
End-of-Life Care for Pediatric Patients
Decisions about withholding or withdrawing treatment are very different for a premature baby, a toddler with end-stage cancer, or an adolescent who is in a vegetative state after a brain injury, than they are for a 90-year-old person, especially a 90-year-old person with an advance health care directive. But futile treatment is a reality in pediatrics, too. A frequent scenario involves a group of providers who have done everything they are trained to do and that their oath directs them to do, to save the life of a child. When the life is not saved, a pediatric death with dignity is not in their mental repertoire, but neither is a referral to experts in pediatric death with dignity. The ethical principles of beneficence, non-maleficence, efficacy, and justice, when applied to pediatrics, assume that the child’s parents are the ones best able to decide for and advocate for the child. But many times when treatment has become futile, the parents have no experience in these kinds of decisions and take their cues from the providers. The nurses are caught in the middle, continuing to perform painful, time-consuming, possibly expensive, clearly futile treatments. The term Moral Distress resonates with every nurse who has walked this path. And, going back to my initial comments about easy to forget, our families, friends, acquaintances, and the strangers we encounter in our daily lives, usually have absolutely no clue about this path we are walking.
If you’re taking care of an aging parent, you will likely face days when the tasks seem overwhelming. By acting strategically, however, you can ease the burden. In honor of National Family Caregivers Month, here are a few pointers to make your life easier.
Tap Community Resources
Your support system may center on family and friends, but it’s also critical, say experts, to tap every possible resource. Fortunately, most communities have offices dedicated to supporting older adults and their families with referral, informational, and other help. Since the Older Americans Act debuted in 1965, Congress has funneled trillions of federal dollars into state and area agencies on aging to provide an array of community and individual programs. Often in combination with other state and local funds, the money facilitates partnerships with area service providers to help seniors and their caregivers cope with all manner of aging issues. By checking with your local office on aging, chances are very good that you’ll be able to connect directly with the resources you need or at least with other groups that offer them. “Seeking out your county office is a great starting point for navigating local resources that are available,” says Meg Stoltzfus, a lifespan service manager in the Office of Work, Life, and Engagement at Johns Hopkins University in Baltimore, Maryland.
Strut the Small Stuff
There are many aspects to staying organized, but taking a few small steps can keep things under control. Although you likely can craft a list of your own, Amy Goyer, a family and caregiving expert for AARP, suggests a few starters: Focus on one task at a time to avoid procrastination. Use paperless statements and online billing to eliminate paperwork. Embrace technology of all sorts since it can streamline your world. If you’re smart phone savvy, for instance, take advantage of user-friendly apps to help track records, share schedules, and keep your caregiving circle informed and engaged. Even though you have options, Goyer recommends three: CareZone, CaringBridge, and Lotsa Helping Hands.
Locate via a Locator
Although identifying area resources is a logical first step, don’t be shy about going national. Stoltzfus, for instance, routinely recommends Aging Life Care Association, a nationwide association of nurses, social workers, and other practitioners dedicated to the delivery of high-quality health care for elderly and disabled adults. With expertise in a variety of areas key to aging well, these geriatric care managers serve as both guides and advocates for families with various resource needs. To find an appropriate professional in your community, visit www.aginglifecare.org. “This is a fantastic resource, particularly when you’re providing care long distance,” Stoltzfus says. “It’s a way to find an extra set of hands, get resource ideas, or just provide care coordination that’s difficult long distance.”
Hire a Personal Assistant
Celebrities aren’t the only people who can benefit from a Gal Friday. Hiring a personal assistant by the hour to run errands in a pinch can free you up to concentrate elsewhere. Goyer, for instance, employs a concierge to assist her with tasks not directly related to her 93-year-old father’s Alzheimer’s care, but critical to her schedule nonetheless. Whether that involves taking her to the airport, sorting her stacks of mail, or doing whatever needs to be done at the moment, her assistant takes over the minutia so she can focus on the bigger picture. “I can hire Debbie for two hours,” says Goyer, “and she gets more done than I would get done in a week.”
Chart Your Requests
You may be missing willing volunteers because they just don’t know what needs to be done. Carol Abaya, MA, a nationally recognized expert on aging and elder/parent care issues, suggests creating a simple chart by dividing a piece of paper in three parts vertically to sort out your options. In the first column, list all the things your elder charge can do. In the middle column, add those things that require some help. Fill the third column with those tasks that he or she can’t do at all. On a second paper, note your resources, whether that includes individual siblings, agencies, or others from the community. Once you’ve identified the possibilities, match your needs with volunteers and let them know. “Many times a family member will say, ‘What can I do?’ and the primary caregiver really doesn’t know,” she says. “This is one way of dividing the chores.”
Get Legal Control
Being authorized to pay the bills and handle other business transactions are critical in ensuring someone’s safety and security. If you anticipate that your elderly parent won’t be able to care for his or her own financial or legal affairs, you need to act as quickly as possible to ensure that you can do so. Obviously, there has to be trust between the two of you, but you want the proper documentation to write checks, manage assets, and make other decisions in your family member’s best interests. That likely will involve signing a power-of-attorney. “People are often afraid that if they give a child a power-of-attorney, they’re going to lose the power to take care of themselves,” says Abaya. “But it only comes into play when they can’t handle those chores.”
After discovering that funds had been embezzled from her father, Polly Shoemaker, RN, BSN, MBA, the director of clinical systems at St. John’s Hospital in Tulsa, Oklahoma, was more than willing to get the ball rolling when he asked, “Polly, how can you protect me?” The two of them not only drew up a power-of-attorney, but also put her name on a new checking account, updated his will, and made sure that correct beneficiaries were listed on his portfolio assets. Even though being her dad’s eyes and ears on such matters was draining, Shoemaker wanted to ensure that he had signed everything pertinent so she had license and direction. “When he said to me, ‘Polly, I just want to do what’s best for you,’” says Shoemaker, “I told him, ‘Dad, it’s not about me. If you tell me what you want done, I need it in writing because we can’t go on word of mouth.’”
Practice a Little Jujitsu
Achieving progress acceptable to you and the person who needs you may require changing your approach. For starters, experts suggest making sure you make decisions with an elder, rather than just for him or her. Obviously, the dynamic will change depending on the mental and physical capabilities of the elder in your charge. Yet you need to honor this person’s opinions at the same time you pace the conversation to reflect where he or she is at that moment.
For instance, when Abaya was taking care of her own ailing mother’s real estate business, she quickly learned to limit her inquiries to one or three questions per hospital visit, just enough for the woman to process. She also made it a practice to never hire anyone without letting both parents vet the individual first. “Too often sandwich generation caregivers make decisions for an elder that are not in tune with that person’s likes and dislikes,” she says. “But we have to consider their preferences and values.”