Archive for the ‘Amy Sutton’ Category

Prepared Patient: Young Adults Taking the Health Care Reins (Updated Version)

HBNS Staff
Thursday, February 9th, 2012

Prepared Patient Publication Logo

Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives.
Written By: Lisa Esposito, Updated (Feb 2012) By: Amy Sutton, Contributing Writer & HBNS Staff

This updated Prepared Patient feature offers advice for young people who are just starting out in managing their health care, including information on important provisions from the Affordable Care Act.

Your parents still might be willing to do your laundry, but if you’re over 18, they can’t make your medical decisions. Are you ready to navigate the adult health care system?

Len Ward, a Louisville, Ky., freelance writer in his late 20s, was born with a rare condition called endocardial cushion defect. Fortunately, he was symptom-free since his second open-heart surgery at 8 years old into young adulthood.

“I have a cardiologist,” Ward said. “He’s a children’s cardiologist but he’s well-versed in my condition. He’s the only one who knows that much about it.  For the foreseeable future I will be sticking with these doctors.”

All too often, the health care system fails to keep up when children with chronic conditions reach adulthood, said Patience White, M.D., a professor of medicine and pediatrics at the George Washington University School of Medicine and Health Sciences.

“It’s not unusual” for a young adult with a medical condition to be without a medical home or age-appropriate health care, said White, who is chief public health officer of the Arthritis Foundation. Moreover, “the bulk of young American adults do not interface with the health care system during their adult years.”

So what’s wrong with that?

Health Insurance Resources for Young Adults
Want to find out more about private coverage, community services and pricing? Check out these resources for more details:

  • Healthcare.gov - This mini-site for young adults explains recent changes in health insurance options as the result of the Affordable Care Act, details coming improvements, suggests providers in your state and offers tips on what to do if you need insurance or have been rejected by insurance carriers. You can also get more info from Healthcare.gov’s Facebook page.
  • AARP – The AARP offers an easy-to-read rundown of the health care legislation changes and their impact on parents and their children.
  • The Commonwealth Fund – More information about how the changes to legislation may ultimately affect the health of young people.

You Have Adult Health Needs

Emerging adults “may not have heart disease but they have risky behaviors,” said Angela Diaz, M.D., program and research director of the Mount Sinai Adolescent Health Center. Young adulthood is a time for “safe experimentation,” but in fact, common not-so-safe behaviors include unprotected sex, substance abuse, violence and preventable injuries.

Getting to know the health care system with regular screenings and checkups can pick up problems that would otherwise progress unrecognized and untreated.

The Agency for Healthcare Research and Quality says that check-ups should include blood pressure and BMI monitoring along with a comprehensive exam with cholesterol tests. Providers can make sure tattoos or piercing sites are intact and infection-free, offer counseling on alcohol misuse and screen for depressive disorders.

The Centers for Disease Control and Prevention also recommend regular STD screenings, including HIV screening, for sexually active young adults. Sexually active women 25 or younger should receive regular screening for the STDs chlamydia and gonorrhea because women in this age group have the highest rates of infection. The CDC also recommends that women should receive regular Pap smears to check for changes that might suggest cervical cancer starting at age 21 or within 3 years of the first time they have sex.

Think shots are just for kids? Think again. Immunizations, such as those for human papillomavirus (HPV), meningococcal disease and hepatitis A and B, also play an important role in protecting the health of young adults.

In addition to shots and checkups, young adults might need to get their lifestyle in sync to protect their health. Obesity rates for young adults are skyrocketing. Balanced nutrition also can be a problem for vegetarians or vegans. Some young adults have tried to quit smoking or find themselves struggling with substance abuse problems, but find they can’t do it alone.

Your Way In: Gaining Access

Fortunately, there’s help for young adults seeking the answers to their health problems. Older teens are “wonderful health care consumers,” Diaz said. “For instance, we have a 24-hour on-call doctor. The kids use this appropriately, they don’t abuse it.”

At the Mount Sinai Center, 10,000 New York City teens and young adults have access to free “mental health, reproductive care, primary and acute care, and specialty care: for obesity, eating disorders, Gay/Lesbian health issues, interpersonal violence, and pregnancy prevention and treatment,” Diaz said.

Some young people find that making the transition to adult health care is a bit uncomfortable. Inevitably, though, comes the time to cut the apron strings.  At the Sinai Center, “the official age is 10 to 22,” Diaz said. “Sometimes they don’t want to go.”

Although you seldom see adult patients in pediatric practices, it still “is a shock when a youth and their family learn that they cannot continue to be seen by their pediatrician,” White said. “The fact that there’s no posted policy that warns you that you will have to move on to an adult health care provider is amazing.”

Patient-Skill Savvy

Another “bridge” to the adult health care world might be the military health system; for others, it’s college.

The University of Maryland Health Center in College Park serves a student body of 37,000, and includes a women’s health center, mental health unit and an urgent care clinic as well as an orthopedic surgeon onsite once a week.

Between freshman and senior year, students do pick up patient skills, said Kelly Kesler, former assistant director of health promotion at the health center.

Some health visit basics they might not have known: “Okay, you can’t just walk in and they’re going to see you right now. You need to make an appointment,” Kesler said. Or at the pharmacy, “some student had never had to bring in their own prescriptions. Some aren’t sure of the difference between a generic and name-brand medication.”

The transition process “is pretty straightforward,” White said. “You need to know how to communicate about your medical condition and what to do to stay healthy, have a copy of your medical record, know how to make a doctor’s appointment and get your prescriptions. You should learning these skills at 13 and have a transition plan by age 14.”

Yet some 25-year-olds might not be able to say with confidence (1) “I know my medication and dosages,” (2) “I know when to call my health provider to report a change in illness status” and (3) “I have an emergency plan.”

Can you fill in the blanks about your family medical history? Could you locate your medical records? Could your kids?

“I believe my current cardiologist has all my medical records,” Len Ward said. He doesn’t sound too sure. “I wouldn’t know where to start,” added Ebonie Williams, a social worker in Manassas City, Va.

Taking control of your medical record doesn’t have to be a big deal, White said: “I just discuss what’s in it and give it to kids on a flash drive; you just download it. They just put it on their computer. I ask them to keep it in a secure place where it stays confidential.”

“I can’t emphasize enough the importance of prevention: learning stress-management techniques now, basics like sleep hygiene,” Kesler said. Above all, college health care “is an opportunity for students to learn about advocating for themselves.”

Health Insurance Changes and Challenges

High school graduation, leaving for college, navigating in an increasingly tight job market – young adults face a lot of changes and moves. In the midst of all those shakeups, finding health insurance coverage often gets lost in the shuffle.

“This age group needs access and services but are least likely to get it,” Diaz said. In 2008, three out of every 10 uninsured persons was a young adult.

But thanks to recent changes to health care coverage laws, young people have increased options when it comes to coverage. The Affordable Care Act legislation, effective September 2010, means that parents can keep young adults on their health insurance plan until age 26. In the past, coverage ceased by age 18 or 21, leaving young adults who couldn’t get coverage through employment adrift without many options.

Now, even young adults who are married, not living at home or not in school can be added to a parent’s plan, as long as they’re not eligible for coverage through their own or a spouse’s employer. Research shows that a significant percentage of young adults are saying “Sign me up!” A 2011 survey of health care providers found that at least 600,000 young adults joined their parents’ insurance plan within a few months of the passage of the law.

But having insurance doesn’t always mean access to care will be easy.  Many recent college graduates no longer live in the same city or even state as their parents—and consequently, their health insurance networks. Finding a provider who will accept a particular plan—or even finding out if a given provider will accept a plan—can be tricky. Websites such as ZocDoc.com or a family’s insurance provider’s website might be a good place to start, but youth and families may need to make some phone calls to verify coverage.

Of course, for some young adults, insurance through their parents still isn’t an option. If their parents can’t or won’t cover the cost of premiums and young adults are unable to pay, if parents don’t have access to health care plans at their place of work or if parents are on Medicare, young adults may need to find coverage through an individual insurance plan (see sidebar for more information about finding an individual plan). And more changes are coming; by 2014, Medicaid requirements are set to expand, and many young adults with low incomes will be eligible for Medicaid insurance coverage.

In any case, a spirit of independence and advocacy – and a willingness to embrace developing changes in health care – can serve young adults well as they start navigating the health care system on their own.

“Students have an advantage over older folks like us,” Kesler said. “They are very much attuned to health technology. They visit respected health consumer Web sites, they can use their iPhones as pedometers and they can use a variety of apps to track their health” online.

Prepared Patient: Watchful Waiting: When Treatment Can Wait

HBNS Staff
Wednesday, December 28th, 2011

Prepared Patient Publication LogoWritten By: Amy Sutton, Contributing Writer
Prepared Patient
, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

In today’s fast-paced world, waiting — whether it’s at the doctor’s office, in line at the grocery store or for an Internet connection — is rarely considered a good thing.

But when it comes to certain medical conditions, delaying treatment while regularly monitoring the progress of disease — a strategy doctors refer to as “watchful waiting,” active surveillance or expectant management — may benefit some patients more than a rush to pharmaceutical or surgical options.

Patients want to know what they’re waiting for, says urologic oncologist E. David Crawford, MD, chairman of the Prostate Conditions Education Council and associate director of the University of Colorado Comprehensive Cancer Center.

The purpose is to watch in order to see whether a condition progresses. That way, patients and physicians know what kind of threat a disorder poses and they can make a better decision about how urgently treatment is needed. Some people might never need treatment, for instance with a slow-growing cancer. Other people can delay treatment for months or years.

Precancerous conditions may also be monitored with active surveillance. One example is ductal carcinoma in situ (DCIS), or abnormal changes in the ducts of the breast. DCIS may eventually progress into an invasive form of cancer, but most cases do not, so some physicians promote regular monitoring to avoid or delay the side effects of breast surgery, chemotherapy or radiation.

Often, active surveillance is associated with cancer treatment, particularly cancers that may progress slowly. There’s evidence that active surveillance offers particular benefit for prostate cancer, follicular lymphoma, myeloma and chronic lymphocytic leukemia. Ovarian, endometrial and uterine cancer might also warrant active surveillance at some point during treatment.

When Syd Ball, a nuclear engineer from Tennessee, was diagnosed with prostate cancer, he chose active surveillance over immediate surgery or radiation therapy.

“When I was diagnosed, it did shake me up,” Ball said. “Once I talked to the doctor, and got the statistics about my chances, then I felt there was no question about what to do. Being an engineer, if you give me the risk statistics on it, I’ll tend to believe that the best course of action is based on what my chances are.”

Watchful waiting allowed Ball and his physician to get a better idea of his risk —whether his cancer was growing and how quickly. If the cancer grew quickly, then he knew he should start treatment. If not, he could wait. Ball was not looking forward to possible treatment side effects that could interfere with his quality of life and wanted to delay or avoid them if possible.

The concept of active surveillance isn’t limited to cancer treatment. It occurs across a variety of medical conditions. Pediatricians or family doctors may recommend watchful waiting for children with ear infections, since many resolve without treatment from antibiotics.

Physicians who treat chronic lower back pain might employ watchful waiting, monitoring patients regularly instead of immediately performing surgery to see if symptoms resolve on their own or whether stress management, strengthening exercises and other strategies effectively manage pain.

The physicians of couples trying to conceive a child sometimes suggest watchful waiting for a period of time before starting infertility tests and treatments, because most healthy partners conceive within a year without added intervention.

Women with endometriosis whose pain isn’t severe, who do not want to have children or who are approaching menopause may choose active surveillance, rather than deal with the side effects of surgery or hormonal treatments. And women with ovarian cysts who have mild or no symptoms might be advised to delay active treatments until symptoms become severe, because surgery carries the risk of infection and bowel and bladder damage.

What Happens While You Wait?

Though it’s a common misconception among patients, watchful waiting isn’t just ignoring the disease or disorder, hoping it will go away. “Active surveillance is a term that defines the fact that it’s not just wishful waiting or delayed treatment,” Crawford says. Physicians actively monitor the situation, and if needed, will jump in and begin active treatment, he says.

If you and your physician agree that active surveillance is a good idea, you’ll need regular checkups, and, depending on your condition, medical testing, such as blood tests, biopsies or imaging scans like MRIs or CAT scans, will be part of your regular monitoring. For conditions like chronic back pain, your doctor may recommend you make changes to your dietary habits, exercise regimen or lifestyle.

“We don’t want to let things fall through the cracks. With active surveillance, frequently we would be following patients as often as you would when they are on treatment, checking tumor markers and monitoring for new problems or symptoms they might have,” says Deborah Armstrong, MD, an associate professor of both oncology and of gynecology and obstetrics at the Johns Hopkins University School of Medicine. “It is different from someone who is at the end of their treatment options. It’s not ‘Should I try this?’ That’s a different concept. The concept of watchful waiting is that you do plan that you will be starting treatment but you’re going to delay it.”

The length of time active surveillance is recommended varies from person to person and is based on a variety of factors, including your age and general health, how severe your symptoms are, how quickly the disease progresses and the risks of delay. Physicians may monitor some patients, such as Syd Ball, for more than a decade without changing course. In other cases, active surveillance may take place for only for a few months ─ or in the case of ear infections, a few days ─ before having to move on to active treatment.

Nikkie Hartmann, a public relations professional from Chicago, came to the process of active surveillance after more than a decade of battling papillary thyroid cancer. Hartmann, given a cancer diagnosis during her freshman year of college, underwent total thyroid removal surgery, as well as radioactive iodine treatments. Though her blood tests still show elevated levels of cancer markers, the side effects of the radioactive iodine treatments and lymph node biopsies have proved uncomfortable and time consuming ─ and the active surveillance offers a break from the treatments while keeping an eye on her disease.

“The doctor didn’t use the phrase watchful waiting or active surveillance, but he said ‘watch and wait,’” Hartmann said. Though she’s still monitored with blood tests and will require additional diagnostic testing and possible treatments if she chooses to have children, within the last year Hartmann and her doctors have adopted an active surveillance stance that delays radioactive iodine treatments and lymph node biopsies for now.

Knowing the side effects that biopsies and radioactive iodine treatments can cause, Hartmann says that she’s at peace with the decision. “I was relieved when they told me that they recommended watching and waiting,” Hartmann said.

Waiting Isn’t for Everyone

Active surveillance is not without risks, however. For some types of cancer, for example, there’s a risk that the cancer may be harder to control if treatment is delayed. Doctors do not recommend active surveillance for fast-growing, aggressive or late-stage treatable cancers.

For other conditions, such as chronic back pain or endometriosis, there’s the risk that painful symptoms may worsen during active surveillance, eroding quality of life and making it difficult to work.

Though active surveillance offers a delay in the physical symptoms caused by treatment, the emotional issues associated with this choice prove difficult for some patients to handle.

“A lot of difficulty comes from the historical context of how we’ve treated cancer,” said Jamie Studts, Ph.D., a psychologist who treats oncology patients and an associate professor at the University of Kentucky College of Medicine. “The idea is very foreign to people that you have cancer in your body and you’re not doing anything to get it out.”

It takes a significant discussion and a decision-making process shared between doctor and patient to understand the pros and cons and how that can be the best way to manage their care at a particular time, Studts says.

“The other problem is the perception of potential rationing of care,” Studts adds. Particularly if people don’t have resources, they could feel like they’re being mistreated or undertreated or not treated fairly if active surveillance is suggested.

But Dr. Armstrong offers reassurance that active surveillance doesn’t mean less face time with your physician: “I spend as much time with these patients as with patients I’m treating. At every point we say, ‘If we see this, we are going to do this. Let’s see what the disease looks like, then we’ll decide if we need to do treatment.’”

Asking About Watchful Waiting

Has your doctor recommended active surveillance?

Here are some questions to ask as you consider your options:

  • What is the expected course of the disease?
  • If I wait, will the disease be harder to treat later?
  • What types of monitoring will I receive while under active surveillance? How often?
  • At what point would you recommend I move from active surveillance to treatment?
  • Are there therapies or activities I can do to slow or halt the course of the disease?

For some people, the anxiety of watchful waiting cannot be overcome, Armstrong said. Regardless of the statistics and the doctor’s recommendation, patients who could benefit from active surveillance sometimes insist on and receive treatment instead.

In addition, the influence of a family member or partner who doesn’t fully support active surveillance may erode a person’s initial decision to use it, Dr. Studts says.

Making the Decision

“Watchful waiting may allow people to have a good quality of life and have the tumor completely arrested. Take diabetes. You don’t cure diabetes, you manage it. With cancer, maybe we don’t have to get it all, maybe we can arrest it or stop it so it doesn’t spread or doesn’t affect major organ systems,” Studts said.

So how do you decide whether active surveillance is for you?

The starting point for making the decision is a trusting relationship with your physician, Armstrong says. “This is a situation where patients have to have trust in the physician, trust that the physician is doing the right thing. It’s easier to treat someone than it is to do watchful waiting. The main issue is that people need to be comfortable with the concept and their doctor is doing the right thing,” Armstrong says.

“Trust your gut if it doesn’t feel right and get a second opinion. You have to be your own advocate, and if you don’t feel comfortable, get more information,” Hartmann says.

Related Links:

Prepared Patient: Hospice Care: What Is It, Anyway?

HBNS Staff
Monday, December 26th, 2011

Prepared Patient - Hospice Care: What Is It, Anyway?

Written By: Amy Sutton, Contributing Writer
Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

Seeking Shelter

The word hospice originated from the Latin hospitium, which means “to host or offer a place of shelter.” In 2009, an estimated 1.56 million patients, more than 40 percent of deaths, received hospice services in the United States. But many others who might have benefited from hospice care did not seek services, perhaps due to misconceptions, fears and the lack of information of patients, caregivers and even physicians.

“Hospice is a collection of services that are designed to support the patient and family through the course of a serious or terminal illness,” said Donald Schumacher, Psy.D, president and CEO of the National Hospice and Palliative Care Organization (NHPCO). The aim of hospice is to provide physical and emotional care and comfort in the months, weeks and days before death.

It’s often hard for patients and their loved ones to acknowledge that the time to consider hospice care has come. People come to that realization differently and there are some that might never seem to face that the end of life is near. But through the ups and downs of emotions and physical status, hospice team members are prepared to help patients and their families with sensitivity and flexibility.

Renata Rafferty, a consultant and author, used hospice services at home initially to assist her in caring for her husband, Jerome, diagnosed with Lewy Body dementia. “Once hospice got involved and came to us at home, it was anything we needed,” she recalls. She says that one of the major benefits of hospice was the education provided about what to expect before Jerome’s death.

When they signed on to hospice, a nurse brought them a booklet about what to expect, including common physical actions and behaviors, when someone is dying, Rafferty said. “When those things started happening, I was very comfortable rather than afraid,” Rafferty said.

Hospice services typically involve care from a hospice team that includes a physician, nurse, medical social worker, and nutritional, pastoral and other counselors. Hospice patients also may receive home health care services, medical supply deliveries and physical, occupational and speech-language therapy.

For caregivers and families, hospice services don’t end with the patient’s death. Alan Guinn, a management consultant from Bristol, Tenn., lost his mother to breast cancer. Guinn notes that the counseling provided to him after his mother’s death helped him address many of his concerns.

“Very few people ever go through the loss of a loved one without asking, ‘What could I have done differently?’ Hospice workers help to alleviate the concern that you didn’t do the right thing, or you didn’t do enough, or you did too much. They help you understand that what you do, or did, or wanted to do — but didn’t — was probably the right thing to do for you and for your loved one,” Guinn says.

Hospice and Palliative Care Options

Although the terms hospice and palliative care are often used together, their meanings differ. Hospice care generally refers to care received during the period of time when a patient has stopped seeking treatment for a life-threatening illness or when more treatment is extremely unlikely to prolong life.

Palliative care provides therapies and medications that are designed to make patients more comfortable and ease the symptoms of serious illnesses or conditions—care designed to improve the quality of daily life. Palliative care relieves pain, addresses breathing difficulties, severe nausea, fatigue and emotional symptoms such as depression and anxiety at any stage of a life-threatening disease or illness.

Though palliative care is always a part of hospice care, palliative care can happen at any point during the course of an illness.

In the 1960s, hospice care was most frequently provided to people who were dying of cancer — where the prognosis was clear and few if any treatments were left to offer. At that time, “palliative care” was given in those late stages of illness. But the focus of palliative care has since evolved: it is often now given earlier in the course of a disease, and is sometimes appropriate while patients are still receiving treatment for that disease.

“It can happen at the beginning of a diagnosis or early on in the disease process. Palliative care is about symptom and pain management, but also about psychosocial and emotional and spiritual support that goes along with having a serious illness,” says Judith Redwing Keyssar, R.N., an end-of-life care expert and director of the palliative care program of the San Francisco-based Seniors At Home, a division of Jewish Family and Children’s Services.

Most hospice patients receive relatively short periods of care. The average length of a hospice stay was only 69 days in 2009, according to the latest statistics from the NHPCO.

Patients may delay enrolling in hospice care because they want to continue what they hope will be life-sustaining treatments, because they don’t know what hospice is or because they’re concerned about the cost of hospice care, reports the American Geriatrics Society.

Generally, for insurance companies or Medicare to pay for hospice benefits, a person must have a predicted life expectancy of less than six months. But signing onto hospice is neither a permanent contract nor a death sentence; it doesn’t mean you’re going to die tomorrow. “It simply means you meet the criteria to receive this benefit” says Kathryn Gurland, a licensed clinical social worker and cancer navigation consultant with PEG’S Group in New York City.

“A lot of times people think hospice is provided at a specific place, but we can provide care at home, assisted living facilities, nursing homes and in acute care settings,” says Nancy Kraft, R.N., director of clinical services for Covenant Home Care in Reading and Pottsville, Pa. More than two-thirds of hospice patients receive care at home, according to the NHPCO.

In a hospital-based hospice program, a special unit is reserved for hospice patients and their caregivers and families, who have access to support services and social workers, chaplains and other professionals to help them deal with the emotions and stress of a terminal illness. Nursing homes and long-term care facilities may also offer hospice services. Stand-alone hospice centers are another option in some communities. Those facilities provide hospice care only for patients with life-threatening illnesses, in a home-like environment.

“Families are often managing distressing psychological and emotional symptoms on their own, with some support from a primary care doctor, but with not a lot of support with issues related to terminal illness. What they generally get [with hospice] is a whole menu of people — doctors, nurses, social workers, speech and dietary, pastoral care — designed to meet all of the patient’s needs,” Schumacher says.

Who pays for hospice? For patients who qualify for Medicare, the hospice benefit pays for home and inpatient care and services not normally covered by Medicare. At little or no financial cost, patients receive care from nurses, doctors, and other members of the hospice team, as well as supplies like walkers and medical beds. Medicare is the primary payer for more than three-quarters of hospice patients.

Most employer or private health insurance plans also include a hospice-care benefit, although they may pay primarily for home care and services and offer limited coverage for inpatient care.

For some people, especially those in rural areas, hospice options may be limited. A lack of qualified hospice staff and family caregivers, limited hospice programs and greater expenses for travel may restrict hospice choices in some communities. Talk to your doctor about nearby hospice resources. Also, because your state health department handles certification of hospice services, they might help you find local agencies to provide assistance.

Making Decisions

Making the decision to use hospice care typically occurs after a physician informs the patient that more aggressive treatments are unlikely to prolong life and may even make remaining days more difficult. A doctor may suggest to families that the extra care offered by hospice may alleviate pain and provide much-needed support with daily challenges.

“Generally, more than 50 percent of referrals come from primary care physicians. During a course of treatment, the primary care doctor might say, ‘In all likelihood there is no cure, we’re going to recommend hospice care for you,’” Schumacher says.

Patients often wonder whether entering hospice means they can still receive care from their primary care doctor, says Elizabeth Metz, R.N., director of community outreach and program development for Covenant Home Care.

“When you accept the hospice benefit, it doesn’t mean you automatically have a different doctor. Most people have a doctor whom they have known, but some hospices have the option to allow the hospice medical director to be the doctor of record. That doctor has specific expertise in pain and symptom management, whereas often a person’s primary care M.D. or oncologist does not necessarily have this expertise,” Keyssar says. A patient can also receive care from their primary physician in collaboration with the hospice team.

The first few days of hospice can be intense, with visits from new care team members such as admissions nurses, doctors, home health aides, medical supply deliveries, chaplains and even volunteers. But the sooner a patient signs up for hospice, the greater the improvement the hospice team can make in his or her quality of life, Gurland says. And greater support will be more readily available to the family/caregivers.

Though patients enrolled in home hospice care receive weekly or more frequent visits from a nurse and other members of the hospice team, caregivers still provide most of the care. “Patients assume they’re going to have round-the-clock care at their bedside, which is not true in most states,” Keyssar says.

After Rafferty’s early-morning call to the hospice and a talk with the hospital chaplain, she realized that having access to the medical equipment and round-the-clock care of a hospice facility would help Jerome be more comfortable — and relieve some of her emotional and physical burden, too. Once she made the choice to transfer Jerome to the hospice facility, she could finally relax in the home-like atmosphere there.

“It gave me some relief. From a caregiver’s standpoint, it meant that I could leave the room to go to the bathroom or leave to make a phone call to a family member and know that he was cared for,” Rafferty says. Jerome died in the hospice facility five days after admission.

What Hospice Nurses Do at a Home Visit

What can you expect when a hospice nurse knocks on your door? Here are some of the activities he or she might do during typical home-based care:

  • Greet patient and caregiver(s); the nurse may offer support to the patient and caregivers privately during the course of the visit.
  • Ask about appetite, energy levels and whether patient is experiencing pain or symptoms.
  • Take patient’s blood pressure level, heart rate, weight, and other vital signs.
  • Ask if medications seem to be helping or if they are causing problems.
  • Assist patient and caregiver in obtaining medical supplies or equipment needed at home.
  • Offer advice to caregiver and patient about what to expect next in disease process and when/how to request for special assistance.
  • Listen to patient’s and caregiver’s emotional concerns and suggest/arrange assistance from a social worker or pastoral care.

I Wish I’d Known

Regardless of the type of hospice people choose, talking openly about the process and the patient’s wishes and expectations is critical. “You know the saying about death and taxes? We review our taxes every year, but often we don’t even discuss death or dying and what that might look like in any regular way. It’s important to determine what we want,” and talking about hospice options and end-of-life planning helps people do that, Keyssar says.

Determining what you want extends to the hospice organization you choose, too. To get started with the hospice process, talk to your doctor about his or her hospice recommendations and experiences. Rafferty recommends asking members in your faith community for local hospice recommendations. Or you can use a hospice locator to find organizations in your area. (See Resources: Locate a Hospice Agency)

If you and your family are considering hospice care, above all, remember that your choices, needs and wishes are paramount, experts say. “If families are not satisfied with their hospice team, they have the option to choose another hospice,” Gurland says.

“What sets hospice apart is that it’s a patient-driven model. If you only want a little assistance, that’s what we’ll do. If you need a lot of assistance, then we’ll do that as well,” Gurland says.

Resources

Locate a Hospice Agency:

Hospice and Palliative Care Info:

 

TERMS OF USE: This Prepared Patient feature is protected by copyright. When reproducing any material, including the abridged “key points” version, attribution to the Health Behavior News Service, part of the Center for Advancing Health, is required.

Related Links:

 

Prepared Patient: In Case of Emergency: Who’s Who in the ER

HBNS Staff
Thursday, December 22nd, 2011

Happy Holidays! Thank you for following the Prepared Patient Forum’s What It Takes Blog.  During our holiday break we will be re-releasing this year’s Prepared Patient Feature articles.  We look forward to resuming a normal schedule in January 2012.  

Prepared Patient Publication LogoWritten By: Amy Sutton, Contributing Writer
Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

“ERs are very busy places, and we really are the safety net for the broken health care system we have in our nation,” said AnnMarie Papa, DNP, a clinical nurse specialist at the University of Pennsylvania and president of the Emergency Nurses Association (ENA).

Research indicates that today, more Americans than ever — both insured and uninsured — use that net.

Why the increase? Not only does the emergency department provide medical care for the uninsured, but it also offers one of the only options for evening and weekend care for insured patients who can’t see their physician during normal working hours. This uptick means that waiting rooms are often crowded places. Add the busy hospital environment to the anxiety and pain of illness or injury — and you have a recipe for stress, confusion and vulnerability. Knowing who you will likely encounter during an ER visit may help you get the best care at a time when you may be feeling anxious and afraid.

While You Wait

When Ashley Finley, 37, a higher education curriculum consultant, crashed onto the pavement from her bike after braking to avoid a pedestrian, she landed on her head and her chin was bleeding profusely. She and her partner, Goldie Pyka, took a cab to a nearby ER in the District.

Pyka was relieved at the short wait time in the ER; but what she didn’t expect were the numerous encounters, with often-anonymous hospital workers, which she and Finley experienced.

The first people Pyka and Finley met weren’t medical personnel, but administrative registration clerks. These staff members take your name, date of birth and other personal details, and then they collect your insurance provider information.

Once you’re checked in, the next person you’ll often see is the triage nurse. Originating in wartime, the term triage refers to a system of organizing the injured according to how much and how soon they need care.

“The triage nurse is responsible for determining the severity of the patient’s complaints, how sick they are and setting priorities for who goes back to be seen first,” says emergency nurse Papa. Care in the ER is not first-come, first-served; if you arrive at the ER in an ambulance, unconscious or unresponsive, or if you have symptoms that might indicate a heart attack or stroke, the triage process puts you at the top of the list, ensuring you get care before someone with a sprained ankle.

During triage, the nurse typically records blood pressure, temperature, oxygen levels and assesses your pain levels. This role should be filled by a registered nurse, Papa says. As part of the triage process, nurses classify patients based on how quickly they need care, ranging from immediate care needed to no care necessary.

Once the nurse has determined the urgency of your problem, he or she will either take you directly to the treatment area or direct you to the waiting area. Patients who feel any changes in their condition while they’re waiting should inform the triage nurse, Papa said.

Patients usually have no way of knowing how long they will have to wait, although some ERs are working to let patients know periodically how soon they can expect to receive care. (See Emerging ED Trends.)

Though ER wait time depends on a variety of factors, certain times are busier than others, such as weekends. According to the National Center for Health Statistics, two-thirds of people who visit the emergency room arrive during non-business hours—after 5 p.m. and before 8 a.m. Monday through Friday, and also on weekends.

The Treatment Team

Once you move to the treatment area, you will be cared for by the primary emergency department nurse. This type of registered nurse has a degree in nursing, and the training and experience to manage and assist with a variety of emergency situations, from complaints about broken bones and sprained ankles to cardiac arrest.

“That primary nurse is really the jack-of-all-trades,” Papa said. A primary emergency department nurse may clean wounds and burns, suction an airway, administer intravenous fluids, aid in neurological evaluations, field family member’s concerns and arrange for transportation to another floor of the hospital.

Some emergency departments also have a charge nurse, an experienced nurse responsible for overseeing the flow and dynamics of the entire nursing department and managing complex patient cases. In the first half hour you’re being treated in the ER, the charge nurse may be one of several nurses assisting your primary emergency department nurse in providing preliminary care and interventions.

Next in the treatment lineup: your physician. Nearly 87 percent of ER patients see an attending physician, or faculty physician in charge of care. Attending physicians have completed medical school and residency and are medical doctors (MDs), or doctors of osteopathic medicine (DOs). Though traditionally ER doctors may have had backgrounds in internal medicine, family medicine or surgery, “more recently physicians are specifically trained in emergency medicine. ERs now are most often staffed by people who practice emergency medicine full time,” said Charissa Pacella, M.D., chief of emergency services at UPMC Presbyterian Hospital in Pittsburgh.

Specialist physicians with more training in orthopedics, cardiology, surgery, neurology and other medical specialties also consult with attending physicians and treat patients in the ER.

Often people arrive at the ER requiring the immediate care of a specialist. Depending on the size of the hospital and the nature of the problem, a specialist physician with training in orthopedics, cardiology or surgery may be available onsite to aid in the treatment. In other hospitals, specialists, especially plastic surgeons or neurologists, must be called to the hospital to deliver needed care.

In many emergency departments, patients only see the attending physician. But at ERs with a university teaching affiliation, you might encounter both medical students and resident physicians, or physicians in training, who are participating in your care. Medical students are participating in a four-year program, but they aren’t doctors yet. “During their medical school education they spend some time in clinical areas and participate with care, but typically they are learning to take histories, perform examinations and make treatment decisions,” Dr. Pacella said. Medical students may assist, but not direct, your care in the ER.

In addition to physicians and nurses, ERs employ physician assistants (PAs), persons qualified to practice medicine under the direction of a physician, and nurse practitioners (NPs), nurses with advanced training and master’s degrees, to treat patients in the ER. Though PAs and NPs perform many of the same duties as a doctor, the attending physician will be supervising your ER care.

Most ERs also use the services of other medical assistants. “Those might be called a nursing assistant, medical assistant or patient care technician. Many times they were trained as a graduate nurse or a paramedic. The people who fill those roles might help with IV catheters, drawing blood, getting electrocardiograms and transporting patients,” Pacella says.

Today’s ERs often include staff technicians to perform X-rays, CT scans and other tests on patients. These members of the ER or hospital staff perform one or more types of medical testing, but they cannot answer your questions about test results or patient care.

Injured or critically ill patients transported to the ER by ambulance or helicopter also encounter emergency medical technicians (EMTs) or paramedics. Both of these medical pros monitor vital signs, gather medical history and provide emergency care such as CPR during transport; paramedics have additional training that allows them to administer medications, interpret imaging tests and perform more complicated medical procedures. At the hospital, EMTs and paramedics move patients to the ER and provide a detailed report on the patient’s condition to ER nurses and physicians.

Patients who’ve experienced severe injury or trauma require a group of ER personnel — a trauma team — that includes an attending physician, surgeon, one or more residents, a specially trained nurse, and possibly a pharmacist and paramedics, to administer care. Emergency departments and trauma teams may also include a social worker or hospital chaplain; these individuals provide support to family members and can relay questions to the medical team.

Some ERs also use forensic nurses, or sexual assault nurse examiners. These registered nurses are specially trained to collect forensic evidence and treat patients who are victims of violence, Papa said.

Finally, you need a way to get from place to place. Inside the hospital, transporters, or escorts, move you from the ER to another area of the hospital for inpatient admission or testing. Outside the hospital, the transport team includes paramedics, physicians and nurses who provide care to critically ill or injured patients en route to the hospital via ambulance or helicopter.

For patients watching the parade of scrub-wearing people participating in their care, keeping it all straight can quickly become confusing. How do these people know how to treat you? Nurses, physicians and other health care staff communicate with one another and note details about your care in your medical record, which the nurse creates for you during the triage process. Though some ERs use paper-based charts, many ERs have switched to computerized medical records. Your nurse or doctor logs in to a computer in each treatment area to access your chart and makes note about your condition, diagnosis, assessment and treatment.

Who Can Help Me?

So, with all of these players in the game, patients and family members may wonder: Who can answer my questions?

The primary nurse, who is assigned to several patient units or “rooms,” is usually the most accessible staff member to ER patients and can discuss many aspects of your treatment plan, as well as help you learn about your condition or symptoms. Many of the questions could be answered by more than one person, though, so it’s fine to ask the physician how long he or she expects things to take or what kind of test you’re having, Dr. Pacella says.

Other common questions to ask include: When will my pain be reduced? Will I be admitted? Who else will examine me? Pyka said that if she had Finley’s ER experience to do again, she’d ask each person who treated Finley what their role was in her care and what to expect next.

Keep in mind, though, that if you or your loved one is acutely ill, the answers you receive from medical staff may be delayed. “Our focus is on trying to identify life- or limb-threatening injuries and to try to get them resolved quickly, because time is our enemy in those circumstances,” said R. Lawrence Reed, M.D., director of trauma services at Clarian Methodist Hospital in Indianapolis. In critical care situations, even though physicians and nurses may not give you an immediate answer to your question or concern, you should continue to ask until you receive an answer, he said.

Trauma team members don’t have consistent rules about the presence of family members in the patient’s room, and instead take it on a case-by-case basis, Reed said. “When there’s time and it appears that the family member can help alleviate anxiety, by all means we have them there,” Reed said. But if a patient needs multiple or life-saving procedures, there may not be enough room for family members or they may be easily overwhelmed, Reed said.

Most visits end with a patient being discharged and handed an explicit written set of instructions. These instructions may provide information about their health problem or specific symptom, recommend what to do at home and identify restrictions on diet or activity. They may also include instructions on symptoms or problems to look for or when the patients should come back to the ER or call a physician. Patients may also receive instructions about recommended follow-up visits, a referral to a new specialist, prescriptions for medication, devices or equipment that may be needed or work release forms.

“Patients are part of our life for such a short time, but we’re part of their life forever in the stories they tell about the hospital,” says ER nurse Papa. “I’ve had patients that have had tragic things happen, and they come back a year or two later and say, ‘I remember you,’ and they’ll repeat your words back to you. Every word we say is important. Patients know and trust that we really want to do the best we can for them, and we want to partner with them to make their experience the best they can be.”

A final note on follow-up: When it comes to telling their own stories, many patients aren’t aware that it’s often left up to them to let their own primary care physicians know that they were treated in the ER and why. If you ever land in the ER, make sure to pass that information on to your health care team.

* Note: Goldie Pyka is the communications manager for the Center for Advancing Health, of which the Health Behavior News Service is a part.

TERMS OF USE: This story is protected by copyright. When reproducing any material, including interview excerpts, attribution to the “Health Behavior News Service, part of the Center for Advancing Health,” is required.

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