Lost in the SystemWhat to Do When Your Loved One Still Has Some Time
Hospice, Palliative Care, Long-Term Life Support, and Other Considerations
So far in this book, we’ve been talking mostly about end of life and what can happen to patients who have an advanced terminal illness that will progress despite treatment with the latest medical technology. We’ve covered some of the more difficult decisions and the factors that come into play when a loved one is dying in the ICU. But what happens when families or patients make the decision to employ life support? Patients on life support may live for up to a year or longer. During this time, these patients need extensive care, in the form of medication and hospital equipment as well as human touch.
Two Basic Choices
The system offers two basic choices for terminally ill patients (those with a life expectancy of six months or less): (1) LTAC with life support followed by long-term care at a skilled nursing facility with life support or (2) palliative care or hospice for those who choose to decline or to stop life support.
The goal of palliative care and hospice is to provide comfort. Palliative care can begin at diagnosis, and professionals administer or oversee most of the ongoing comfort care that patients receive. Hospice care is recommended when it is clear that the person is not going to survive the illness more than six months. Palliative care has become more accepted at any time within the process of caring for a terminally ill patient. Hospice, on the other hand, has been overshadowed by the notion that people enter hospice to die. In some ways, the hospice system is responsible for this image. Nurses don’t always explain the process. Instead, they jump into talking about pain medication and morphine, positioning it as the answer to all the patient’s problems.
Many of my patients reject the idea of hospice because they believe that once they sign up, morphine will be given until they stop breathing. This belief stems from a dark chapter in the history of hospice and in my opinion is the reason why the great majority of people wait until the last minute to consider it. I, for one, shared this belief about hospice for years, at least until my father-in-law was diagnosed with a terminal liver cancer and was facing the last days of his life. We brought him home from California. The first thing he told me was that he did not want needles, tubes, or cables. He wanted to die at home surrounded by family. The family met, and we all agreed to explore hospice. I was able to explain our beliefs and concerns to the hospice nurses regarding the overuse of morphine. They carefully complied with our request to administer the powerful drug only when he verbalized pain or discomfort. We—all of us, including my father-in-law—wanted some sense of control so that he would be with us, conscious, as much as possible.
Under the circumstances, it was a wonderful experience. My father-in-law was an artist, a gifted painter. During his last day on this planet, he asked us to take him outside. He wanted to see trees and flowers. The hospice team helped us, and we put him in a wheelchair. We will never forget his tremulous hands gently stretching to touch the lilies by the sidewalk. Later that day, he died peacefully, just as he wanted.
A far wider range of services is available for people who need long-term care lasting more than six months. And government resources for help are available and easy to find on the Internet. That’s the good news. The bad news is that no blueprint exists for navigating today’s ever-changing health-care system, and when your loved one needs long-term support, chances are you are going to face some confusion, if only because of the overwhelming amount of information you must take in and all of the factors you’ll need to weigh. In this chapter, I offer you a blueprint of sorts, some immediate and ongoing goals to help you prepare for the many changes that lie ahead in terms of caregiving responsibilities, living arrangements, and insurance coverage, along with some basic information about where to turn for help.
First, let’s talk about what throws people off guard from the get-go. It has to do with transition of care and is sometimes referred to as the “health-care windmill.” It affects not only every patient who needs more than one level of care, but the cost of that care as well. And most people don’t see it coming.
167 Days on a Windmill
After I inform patients about their clinical condition, the same questions come up in each conversation: What happens next? Where am I going to go next? What are my insurance benefits? What should I expect? One patient after another asks these questions of me every day. For most of my patients, the answer is that they will be riding the windmill of care.
Hospitals sometimes refer to the “health-care windmill” as a way to describe patient transition of care. Each vane of the windmill represents a different level of care. The move to a new vane is directed by insurance providers and the hospital—not necessarily by a doctor—which is often where the confusion begins.
The traditional windmill of health care has four vanes:
1. ICU, 7–20 days
2. Regular hospital bed, 7 days
3. LTAC facility, 25–40 days
4. Skilled nursing facility, 100 days
The exact number of days in any one facility depends on the payment arrangements the insurance company has made with the hospital. Insurance covers all or a portion of some of those stays but only for the allotted time and usually only with the insurance company’s preapproval. If you’d prefer that your loved one stay in a regular hospital bed for another day or two, the doctor can request an extension, yet it’s quite possible you’ll be paying for it out of pocket. A fifth vane of the windmill is the trend of moving the patient home with advanced equipment. (Home health care services will most likely become a necessity as the nation’s growing population of older adults overtakes hospital and nursing home beds.)
To patients and their family members, these preordained transitions of care are stressful and almost always unexpected. Families have no clue that these strict limits are in place because no one bothers to tell them until shortly before the transfer. The ICU I work in is living proof, but this pattern is not unique to my practice. These mandates, established by Medicare and followed by all health insurance companies, are nationwide. The goal is to transfer stable patients to a lower level of care where the cost is significantly less. They mean well—we need a financially sustainable system that guarantees service to all citizens. The problem I see is that the system is focused on the “money” and not on the “human being.” We need a system focused on the patient without losing sight of financial stability. The only way to focus on the patients, the human beings, is to embrace them.
Lost in the System
Every day, I see people who are lost in the system. Usually, these are older adults and so-called “minorities”—a word that I don’t like. I don’t see people as minorities. I see people who do not understand the language or the system and who need more help than others. I see the struggles of older folks from Asian, African, European, and Hispanic communities who don’t speak English. From my vantage point, I would argue that the doctors and nurses should be the leaders responsible for clear communication when it comes to next steps and transfer of care. Many of my colleagues say that they do this. However, patients and family who are experiencing a roller coaster of emotions are not always paying attention. Or they simply do not understand the language well enough. 
The Numbers Speak for Themselves
My team and I surveyed families at our facility, which serves a large acute-care hospital, an LTAC facility, and two skilled nursing homes. We asked families what they knew about what was going to happen to their loved one before arriving in a hospital room. More than 90 percent of the families we talked to did not know that their loved one would be transferred from one ICU, while on a breathing machine or multiple machines, to another hospital ICU or hospital bed. Adding to the tension was that over 90 percent of the families reported that they weren’t approached with the possibility of being transferred to a different location until 24–48 hours before the transfer.1
When family members receive news of a transfer a day or two beforehand, they often suffer the heavy psychological burden of having to watch as their loved one, attached to a breathing machine, IV, and feeding tube, is transported by an ambulance to another facility. On top of this, they have little time to research facilities or insurance benefits.
Mrs. Joan Stafford’s Case
Joan Stafford, a lovely seventy-five-year-old lady who suffered a massive stroke complicated with respiratory failure that required intubation and prolonged mechanical ventilation, spent twenty days in an acute-care hospital. She did not wake up from her stroke-induced coma and was entirely dependent on the ventilator for breathing support. The decision to transfer her to an LTAC facility was made on day nineteen of her ICU stay, and her family was informed the same day. Two months later, I met Joan’s daughter, Martha, in the skilled nursing home where I was seeing my ventilated patients. She told me the following story in tears:
The case manager came and told me that they found a bed for my mom at a local LTAC.
“LTAC . . . what’s that?” I asked.
“Oh, I’m sorry. An LTAC is a rehab hospital for patients on ventilators. She needs it.”
She told me that without hesitation. It came out of her so nonchalantly, like drinking a glass of water. I was speechless, astonished, confused, and dizzy. She offered me a tissue and a glass of water.
“Can’t she get rehab here?” I asked.
“No, the LTAC is a hospital that specializes in mechanical ventilation.”
“Can I go see it?”
“Sure you can. Here is the address.”
“Oh no, this is forty miles from home. Is there one closer than this?”
“No, unfortunately that’s the one her insurance prefers.”
A few hours later, my brothers and I went to visit the LTAC. We could not believe what we saw. It was a very small hospital built in the 1950s. The lobby was the size of my bedroom closet. The hallways were clean, but the people were rude. All of a sudden, my mom went from a single bed ICU to a room shared with another patient who was also connected to a ventilator. The floor in her room had fifty years’ worth of stains. The bathroom sink was from the 1960s, the air conditioning didn’t work properly, and the issues went on and on. I could not believe it.
One day, the patient next to my mom seemed to be drowning on bubbling secretions, so I called out,
“NURSE, NURSE, NURSE . . . HELP . . . HELP!”
An intercom responded, “May I help you?”
“Yes, yes, the patient next to Mom is drowning on secretions!”
“Oh, okay. Don’t worry. He has been like that for a year now.”
I still have nightmares about this place. I wake up gasping for air and in a pool of sweat.
Forty days later, I was told that she now needs to go to another “rehab” in a skilled nursing home. Yet another lie. Dr. Ferrer, the LTAC facility had one nurse per six or seven patients. The skilled nursing facility has one per twenty. My mom’s insurance covers only one place. This one is seventy-four miles away from home! I can’t believe it!
Blueprint for the Transition to Long-Term Care
Knowing that the onus of communication often falls on patients and families, you should at least have some understanding of what types of questions you need to ask when your loved one is in the hospital with a terminal illness (these questions also apply to older adults who can no longer care for themselves at home and patients who are chronically ill or need rehabilitation after a stroke or a fall, for instance). Gathering this information and doing the legwork ahead of time helps you avoid being blindsided. Here is a blueprint for you to follow concerning your immediate goals:
1. Meet with your family or other support group to determine family wishes and goals of treatment. For terminally ill patients, this is unlikely to include full recovery.
2. As soon as a diagnosis has been made, ask:
• Doctors: Prognosis and options for care
• Hospital case manager or care coordinator: Possible locations where the patient can go and the pros and cons of each one (Keep in mind that not all facilities are created equal. A lot of them have lower standards for quality of care and focus on volume rather than the well-being of the patient.)
3. Determine what insurance will cover and get preapproval:
• Talk to the hospital’s care coordinator.
• Call Medicare/Medicaid or your local SHIP office.
4. Visit the facilities beforehand to see which one would be the best fit:
• Talk to families with personal experience at the facility.
• Check multiple online sites for reviews.
• Select one to three best choices.
5. Meet with family members, case managers, and doctors to establish a plan of care. This includes recommended treatments as well as recovery expectations. Bring your notes from your family meeting for goals of care (#1 above). A plan of care helps you to gauge whether the current level of care is adequate.
6. Ask the hospital for copies of specific records:
• Medication list at discharge
• Hospital summary highlighting procedures (dates and times) and complications
7. Schedule an interview with the care team at each of the top facilities on your list. Clearly state your goals and plan of care and ask them if they will be able to meet them. (See page 90 for specific questions to ask.)
8. Select a facility and stay aware. There’s no need to be paranoid or to distrust the professionals assigned to help you and your family, but be vigilant and stay aware of what is going on with the care of your loved one.
9. Take advantage of the facilities that offer the services of care coordinators.
Getting Help from Hospital Staff
If your loved one is in a hospital setting or some level of long-term care, the staff will work with you to determine the next best level of care and then suggest some facilities, but you’ll need to do the legwork and determine which one is the best fit. These days, it is more and more common for hospitals to have care coordinators on staff. So be sure to request to speak with one. Care coordinators can help in many ways. They are a liaison between you and the health-care staff, and their job spans everything from ensuring that patients understand their medical conditions to counseling patients on the different treatment options available. Care coordinators will refer you to continuing care facilities and help you get in touch with community resources. Hospital care coordinators may or may not be able to answer insurance questions, but they can lead you to the best resources.
Some long-term care insurance policies include access to a care coordinator to help with long-term care decisions. If your loved one has a long-term care policy, contact the insurer for more information. (Keep in mind who these coordinators work for. It’s possible they will make recommendations that benefit the insurance company more than the patient.) Remember that the doctors and nurses who’ve been caring for your loved one are the most knowledgeable about his or her condition. Don’t be afraid to discuss with them the care coordinator’s recommendations—ask questions, run your decisions by them. These conversations can be reassuring, especially if you don’t feel comfortable with all the change that’s taking place.
Get the Bird’s-Eye View
It’s not uncommon to see chronically or critically ill patients go through a revolving door of hospitalizations, from the ICU to a hospital stay to rehab and back to the ICU. For some families, this creates a web of confusion. Why does he have to go back to rehab? Why can’t he stay in the ICU? Why didn’t they just keep him in the hospital longer? The first thing I do is sit down with them and say, “I am going to break through all those webs and try to get to what you need to know—what you need to know in terms of a thirty-thousand-foot overview of the situation.” Most people don’t have that. They don’t have a sentence summarizing the situation. Ask your loved one’s doctor to sit down with you and give you this kind of overview.
There’s No Code for “Normal”
Some patients have charts with fifteen to twenty diagnoses—one for each visit. Make sure you know the diagnosis that is keeping your loved one in the hospital. Here’s what happens: The medical insurance billing system dictates that a code be entered for each set of symptoms and resulting treatment—for example, anxiety medication prescribed for a heart patient who can’t sleep. In this case, to be reimbursed for the medication and the doctor’s time, the hospital must submit the “anxiety” code. This information makes its way into the medical record. This particular patient, who needed a sleep aid for just a few nights, left the hospital believing he had an anxiety disorder.
The point is that there is no diagnostic code for “normal.” To be paid, hospitals must submit a diagnosis. If you’re confused, talk to the doctor or care coordinator, who can hone in on the primary diagnosis.
Where Do Caregivers Go from Here?
At this juncture, everything in your world is changing. You’ve suddenly inherited a lot of new responsibilities. Once your loved one is set up in a facility or at home, your role as caregiver doesn’t end. In fact, it might be just beginning. Caregivers often put themselves in second place. The attention is on the patient, and that can be a full-time job. Caregiver burnout is rampant, and it happens quickly.
Whether you’ve been caregiving for a while or are new to the role, you will benefit by having some goals of your own. I’ve numbered these goals to indicate some kind of order but know that they are ongoing, if only because the only thing we can really count on is change. You might find a wonderful LTAC facility for Mom and then need to move her to a skilled nursing facility down the road, or you as primary caregiver need to go back to work. The number one goal, however, remains the same: ask for help early—and over and over again as needed.
A Caregiver’s Twelve Ongoing Goals
To minimize the stress and effort involved in caring for a loved one, follow these ongoing caregiver goals:
1. Gather one or two relatives/friends to help you right off the bat.
2. If health improves or deteriorates, determine the level of care needed (via medical staff, family doctor, or county aging unit screening).
3. Research and visit facilities, if relevant.
4. Understand insurance coverage.
5. Estimate out-of-pocket cost.
6. Discuss finances with family/lawyer and create a plan.
7. Visit patient frequently and take frequent breaks.
8. Be honest with yourself about how much you can handle.
9. Find ways to practice self-care: support groups, scheduled outings, walks, prayers.
10. Keep growing your support system.
11. Communicate specific needs to your support system (be nice and specific).
12. Slow down, be mindful, and keep your boundaries.
Most caregivers wait too long to ask for help. Before they know it, they’re overwhelmed and don’t have the wherewithal to establish a reliable support system. So the first goal is to ask for help! One or two family members or friends are essential in the beginning. Most people, when asked respectfully, easily open their arms to the opportunity to help. If you’re alone, or face obstacles with family members (which is common), support is still available to you in many forms—church, support groups, county services, and more. Talk to a nurse or doctor or care coordinator. Someone will find someone to help you. Overlooking this important step puts you in the position of having to make difficult life-changing decisions alone while anxious and stressed out. Knowing someone else is in your corner—and who is there to give you needed respites—goes a long way.
Determine (or Reassess) Level of Care
The options for long-term care have expanded in recent years to accommodate people who don’t need a full-service skilled nursing facility but who still need some assistance. These choices are comforting to those who flat-out reject the idea of living in a nursing home, especially if all they need is a service like Meals on Wheels. Many of the options are far less costly than a nursing home as well. You’ll want to gather your support group and discuss the options. You’ll most definitely want to consider Mom’s or Dad’s wishes right up there with the doctor’s prognosis. You’ll be weighing many factors—medical needs, cost, location. Most families know when they’ve made the right decision. It won’t always be ideal, but as long as the focus is on the patient, you’re doing the best you can—and that’s all you can do.
All levels of care require some preparation and, in some cases, a bit of training.
Mr. Frank Lee’s Case
Frank Lee, a wonderful, caring husband and father of two boys, was admitted to my ICU with severe pneumonia. Now sixty-seven years old, he had smoked one to two packs of cigarettes a day for more than fifty years. Ten years ago, he began battling severe COPD, a term used to describe a hodgepodge of breathing conditions, including chronic bronchitis and emphysema, that have advanced to the point of being irreversible. COPD evolves over many years, from a noticeable but manageable shortness of breath during exertion to difficulty breathing while at rest. Coughs also tend to be progressive and disturbing.
Three or four trips to the ER per year with COPD exacerbation was part of Frank’s life, his wife, Mary, told me. On this particular admission to the ICU, we intubated Frank and eventually performed a tracheostomy for prolonged ventilation. After ten days, we transferred him to a local LTAC facility, but after two weeks, he was rushed back to our hospital with a severe rectal bleed caused by a tube inserted ten days prior when he had developed liquid diarrhea.
Frank improved quickly but remained on the ventilator. With a weakened immune system, the typical complications of hospital-acquired pneumonia, skin ulcers, and urinary tract infections were just a matter of time. For Frank, every complication would be a setback, something more to keep him from going home. We discussed going back to the LTAC facility, and he emphatically refused. He was determined to go home, and Mary agreed with his choice. They began making arrangements for at-home palliative care.
The trip home required two days of preparation. After talking to Medicare, the family was preapproved for a hospital bed, a system to suction secretions, oxygen tanks, bed supplies, medications, a nebulizer machine, two portable ventilators (one for backup), the appropriate drugs, and miscellaneous items. Medicare also approved a visiting nurse for one hour a day, Monday through Friday.
Their sons agreed to pay a nurse for a few more hours a day to give Mary a break, but they could not afford a respiratory therapist to help with the ventilator. Ventilators have a multitude of safety parameters designed to prevent a range of potential complications: if a patient receives too much air, for instance, it will blow up the lungs and create a pneumothorax (when air escapes the lungs and infiltrates the area between the lungs and the chest wall), a complication we call barotrauma. Other, simpler but no less harmful complications can take place: patients can get disconnected, the tracheostomy tube can come out, the lungs can bleed from suctioning trauma, or the tubing system can get blocked with mucus. All of the aforementioned can turn into life-threatening problems that respiratory therapists are trained to prevent and treat. Nurses are the jacks-of-all-trades. They can help with just about any aspect of home health care, but they are not schooled in working with the specifics of mechanical ventilation. Our staff respiratory therapist trained Mary on how to handle the basics of the mechanical ventilation and the necessary treatments and instructed her to call 911 if anything out of the ordinary happened. She also gave her some general precautions, such as the importance of keeping the head elevated at forty-five degrees to prevent pneumonia, and one of our nurses provided instructions on how to care for the skin to avoid wounds.
Mary felt comfortable enough with her new duties, and she seemed to comprehend how much her world was going to change because of them. Still, the preparation had just begun.
“Dr. Ferrer,” Mary began, “Frank wants to spend the last days of his life overlooking the ocean. He has lived all his life in Key Largo, and our house is by the ocean. His dad built this house in 1931. It was empty back then. . . .” Her phone rang, abbreviating our conversation. It was the medical equipment company at their house. She talked to them for a few minutes. Suddenly, she changed her tone. She sounded frustrated and anxious.
“What happened?” I asked.
“I forgot to tell them that we live in a two-story house. The delivery man needs help carrying the equipment up to the second floor.” She called her son, who went to help.
Five minutes later, another call. “Oh no, oh no . . . I can’t believe it!”
“What happened?” I asked again.
“We can’t leave today. We need to call Florida Power & Light.”
“Why?”
“We don’t have a backup generator. FP&L needs a letter from you explaining the need for power-outage protection in our house.”
Despite these early complications, Frank left for home the next morning. A month later, my son and I visited the family, and Mr. Lee was doing great! He was now spending a few hours off the ventilator every day and relaxing on a recliner. Mary had become an expert at handling the Hoyer Lift, a hydraulic-powered contraption used to lift and transfer patients with minimal physical effort. And they were happy to be home. We talked about the transition out of the hospital. Mary kept repeating, “What a trauma, what a trauma . . . but it was worth going through it.” As I write this chapter, Frank has been home for six months, on the ventilator only at night, drinking coffee in his recliner in the morning while overlooking the ocean.
Levels of Long-Term Care
Long-term care is provided in a variety of facilities. Here’s a quick primer.
Long-Term Acute Care (LTAC) Facilities. These are hospitals with twenty-four-hour nursing, respiratory therapists, daily doctor visits, and rehabilitation services. Some LTACs house an ICU.
Long-Term Care Facilities. These facilities provide restorative care, skilled nursing, and other assistance for those who cannot live on their own. These include nursing homes, rehabilitation facilities, inpatient behavioral health facilities, and long-term chronic care hospitals.
Residential/Continuing Care Communities. These are apartments affiliated with long-term care facilities. They offer a range of care, from assisted living to skilled nursing, on one campus.
Adult Care Facilities. These facilities provide twenty-four-hour supervision and assistance with minimal personal care (bathing, grooming, supervision of medications, meals, housekeeping, and social activities).
Assisted Living Programs. These programs combine an adult care facility with a home health-care agency for added health-care supports, including some nursing services and doctor-ordered therapies.
Safety, Comfort, and Independence
Trials and tribulation are par for the course when it comes to transition of care. When it gets frustrating, remember the primary goals of any kind of long-term care: to ensure that your loved one is safe and comfortable. Most people also insist on maintaining as much independence as possible. I can’t tell you how many of my patients choose freedom over safety, even those who are terminally ill. Mark, one of my patients, is a prime example.
Mark called himself a “free range” human being. He got claustrophobic when I would close the exam room door. He told me that he always kept room doors open. Freedom and independence were everything to him. At age ninety-one, he was still driving. I met Mark when he ended up in the hospital with a severe urinary tract infection. He required five days in the ICU and two days on the hospital ward. Mark was ready to be discharged, but he lived alone. He would need help getting up and moving around. Our team explained his options: he could go to an LTAC or a skilled nursing facility. “No way,” he announced. Home and freedom were his only goals.
A couple of days later, we were able to discharge Mark, and he was strong enough that we acquiesced to his request to go directly home. Before discharge, we talked about safety at home and how to respond to similar events in the future. He was quick to answer. “I just want to be independent until they close my coffin. I’m DNR/DNI. If I don’t get better with treatment, please just let me go. If I get better, let me be free.”
Not everyone is as resilient as Mark in their nineties, and going home may not always be an option. If independence is a priority, whenever possible, start out small and add services as necessary.
When Your Loved One Is at Home
If your loved one is at home and you suspect she needs some assistance, many resources are available to you. Start out by speaking with the family doctor. Explain what changes you’ve noticed in her behavior. The doctor will offer advice and resources.
You can also contact your county agency on aging and disability to request a long-term care assessment. These screenings are usually free and conducted by a professional who comes to your home. They can also help to determine whether Mom is eligible for Medicaid.
By contacting these resources, you’re engaging with the system, which gives you not only access to the people who have the answers to your questions but answers to questions you didn’t think to ask. It’s just a start, but it gets the ball rolling.
A Word to At-Home Caregivers
Communities in general are not as tightly knit as they once were. We click the garage door opener, park the car, and walk inside the house. Some of us don’t even know our neighbors anymore. Just like it takes a village to raise a child, it takes a community to care for an older or ill adult. I implore you to take advantage of supports. Believe me when I tell you that most people wait too long. They believe they can handle caring for an older adult or that health will improve quickly. Many caregivers don’t want to bother others or don’t believe anyone will willingly chip in. They find themselves depressed and exhausted and bitter because no one will help.
In truth, it may just be that no one knows what kind of help you need exactly. From the outside looking in, it might appear as if you have everything under control. Or people don’t want to meddle. And if they’ve never done any caregiving for an older adult before, they likely have no comprehension of what it involves.
So the best advice I can impart here is to convince you that everyone needs a support system, in the form of relatives, friends, neighbors, and in many cases personal care aides, social workers, and clergy. Once we burn out, our ability to help diminishes considerably. Then what do we do?
It’s also true that not everyone is a born caregiver. We may want with all our heart to take care of Dad at home instead of placing him in a nursing home, but the planning and details and the work itself are just not natural to us. Or we’re still trying to hold down a full-time job at the same time. There’s no shame in this, but it is important to recognize that we’re approaching a breaking point and talk about it to find a workable solution. We all have a breaking point. Staying strong is admirable, but keeping our need for help a secret can make us bitter and prone to lashing out at others. We may become the drama queen, the nightmare no one wants to help because we can’t have a simple conversation without it erupting into a full-fledged knock-down, drag-out argument.
The Breaking Point
Recently, I was treating a patient with multiple medical problems. His wife, Liz, had a very pleasant nature. She was among the nicest people I’d ever met, in fact. Over the course of three weeks, her husband was transferred from one hospital to another, from rehab and back. He was eventually brought back to my hospital. By the time he got to our hospital, Liz was frustrated and angry. She called her family in for the first time, all of them. She was barking orders, admonishing them for not showing up earlier, and blaming them for how troubled she felt. When a family member tried to calm her down and ask what she needed, she produced a series of venomous responses, none of which directly answered the question.
I was shocked to see this—she had just brought these innocent family members into the picture—yet I understood. I knew her drastic change in behavior was because she hadn’t been sleeping, and the transfers were unexpected and stressful. She had already spent three weeks at her husband’s bedside.
Liz is a successful business woman. She runs about twenty retail stores in just as many major airports. In her business life, she knows how to take charge. Yet in her personal life, she hadn’t been able to gauge when to call in the troops for help. She waited too long. When she finally rallied them, she was so mean and spiteful that no one really wanted to help.
All or part of the cost for an at-home personal care aide (PCA) might be covered by insurance or Medicare if the patient requires some skilled nursing services, physical therapy, or speech pathology services. As of this writing, Medicare does not cover personal care, meals delivered to home, twenty-four-hour care, or housekeeping.
Geriatric Care Managers
Geriatric care managers (GCMs) are newcomers to the field of at-home care, and not many people know about them. Families pay out of pocket for GCM services, but a good GCM can save you money in the long run, so it’s worth at least looking into the cost. GCMs are particularly valuable in helping families who are caring for someone at home and need help with caregiving and advocacy. They tend to have more skill sets than personal care aides because they understand the health-care system as well as insurance and resources available. GCMs can assess the level of care needed; develop a care plan; communicate with medical providers, family caregivers, and the patient; contact the right resources; decipher medical records and explain in layman’s terms what is going on; and much more. I would look for a recently retired nurse or physician who might have time to do this work. A good GCM will guide, advise, and comfort the patient and family.
Research and Visit Facilities
If you determine that Mom or Dad needs to stay in a facility, you’ll want to investigate. Use the resources at your disposal (care coordinators, nurses, family, people you know who have loved ones in the type of facility you’re looking into) to come up with a list of appropriate sites. Write them down in a notebook and leave plenty of room for comments. You’ll want to do at least some of the following:
• Talk to your resources about what you read and get their input.
• Prepare a list of questions.
• Select the top three choices and make appointments to tour them.
• Note your first impressions:
~ Is it clean? Does it smell fresh?
~ What is overall employee morale?
~ Are patients treated respectfully?
~ Do patients seem comfortable there?
~ Are rooms cheerful and personalized?
• Interview your tour guide—or request to speak to a manager.
• Request to see an inspection report.
Questions for Long-Term Care Facilities
When visiting a facility, clearly state your goals and ask if they will be able to meet them. Ask specific questions. For instance, if a goal is rehabilitation after a stroke, your questions might include these:
• How do you define “rehabilitation”?
• How often do you perform these services?
• How often will Mom get out of bed?
• Will you teach us (family) how to help with rehabilitation?
• What is the specific plan for weaning off the ventilator?
• How often will a doctor visit Mom?
The Dark Cloud Over Nursing Homes
Of the thousands of patients I’ve treated over the years, not a single one has wanted to go to a nursing home, for either LTAC or long-term care. Not one. Some patients will even reach out to insurance to appeal the transfer. This “n” word is not well received by anyone needing long-term care, quite possibly because nursing homes in general have an overwhelmingly negative reputation that precedes them. Yet nursing home stays are in many cases a necessity. How do we reconcile sending our loved one to a nursing home against his or her will, especially if we can’t be sure we can trust the services?
For many doctors who are in the position of recommending the transfer, this is the proverbial elephant in the room. Doctors are rooting for recovery. We want to see the disease process resolve and the patient heal. Whether that healing takes place in a regular hospital bed or a nursing home bed, however, is not up to us. We really have no control, and so we must transfer patients to the next level of care.
We’ve all heard stories of fraud and neglect over the years. Older adults remember when nursing homes were completely unregulated and had an even darker reputation. Some will recall the days of the almshouse—which many people knew as the poorhouse. Before the 1930s, older adults who couldn’t live on their own and were isolated from family lived among the homeless and the drug addicted in an almshouse. They had a roof over their head but no medical attention. Conditions were less than desirable.
At worst, people equate nursing homes with taking advantage of the elderly. At best, they see them as cold and lonely, a far cry from home. So how much is perception and how much is fact?
These days, nursing homes are regulated more than nuclear energy facilities, yet many of them suffer from problems. As in most operations, these problems start from the top and work their way down the chain. The typical scenario involves owners focused primarily on profit and managers who are not trained in compassionate and patient-centered care. When quality of care isn’t on the radar screen, we’ve got a recipe for disaster: the smell of urine upon entering a room, patients lying in their waste for far too long, bedsores, disgruntled employees, and high employee turnover rates. Stories of fraud and neglect in nursing homes are all over the Internet. And it’s a shame.
In Cuba, I did not see such conditions. Rooms smelled fresh, and bedsores were few and far between. It is possible to care for older adults with dignity and respect. Patient-centered nursing homes exist in the United States. You just have to find them.
According to the 2010 US Census, only 3.1 percent of older adults live in skilled nursing facilities—down from 4.5 percent in 2000.2 The remaining 96.9 percent have taken advantage of the many alternative arrangements available. If your loved one must go to a nursing home for short-term or long-term care, you will want to do your research. Not all nursing homes are created equal, so you must do some legwork and find a facility you feel comfortable with.
When Your Loved One Is in a Nursing Home
When a family member is in a nursing home, the most important thing you can do is to show up. Make regular visits and get to know the caregivers. Show up at different, unexpected times, if possible. Or have a friend or relative check in.
Ask your loved one how he feels about the place. Your loved one might have made up his mind that he didn’t like the place before he even got there, but gauge his reactions to try to discern whether there’s any truth to negative comments. Follow up with staff if you feel something isn’t right. If you’re deeply concerned, talk to the administration. If you don’t find answers, report the facility to the state and do what you can to make alternate arrangements.
Check for pressure ulcers, or bedsores. Many people believe that bedsores are a given when a patient must spend months or years bedridden. But that’s simply not true. Bedsores can be avoided by keeping the skin clean and dry and repositioning the patient regularly—every fifteen minutes or so for patients who can move themselves and every two hours for those who need to be moved. Nursing homes have a responsibility to prevent bedsores, yet according to the Centers for Disease Control and Prevention, an estimated 12 percent of nursing home patients develop them while in a nursing home. Bedsores are painful and, if untreated, can become infected. Malnutrition, edema (swelling), chronic vascular problems, and chronic kidney disease are among the most common predisposing factors for the development of bedsores. Although many wonderful nursing homes do a superb job in preventing and managing bedsores, others do not. Bedsores could be considered a sign of neglect, so be aware.
Having said all that, many nursing homes are stepping up. In recent years, I have worked with a growing number of nursing homes in south Florida that do a fantastic job caring for their clients. The ones that invest in staff education and facility maintenance usually do a great job. I usually recommend families do their research. Once in the facility, I suggest family members learn how to do bed rotations (repositioning the patient to prevent bedsores) and the in-bed basic physical therapy. I suggest they get involved!
Who Makes the Decision?
What do you do if your loved one refuses to go to an LTAC facility, for instance? This happens all the time, but eventually your loved one will be transferred out of the hospital. The social worker on staff plays a large role in convincing the patient and family, who are usually told that they will be responsible for paying the bills after this day if the patient stays. If you have power of attorney, you can make the decision, but you are also responsible for the bills.
Transition of care is inevitable. People do not stay in ICUs or hospital wards forever. At this juncture, many families become conflicted. They have the information, and now they must weigh all the factors, including goals of treatment, plan of care, patient’s wishes, and quality of the facility or at-home care. Suddenly, finances take center stage. As a caregiver or family member, you need to protect your finances, yet you want to be sure that Mom or Dad is in a nice place. Many people struggle with this. How do we reconcile putting Mom in a Medicaid-approved facility that we don’t approve of? Do we sacrifice our financial stability? When does not contributing financially become selfish, and when does contributing become foolish?
Once a facility or at-home care is selected and the benefits have been sorted through, most families realize for the first time the significant cost involved in long-term care—in both time and money. Medicare and other insurances only cover so much, and so now families must also face another sensitive subject: the out-of-pocket cost of long-term care.
ACTION Be Proactive
As soon as caregiving is on the radar screen, call a meeting with family members for suggestions about how to handle it. Bring up roles, responsibilities, and finances. This helps ensure everyone is aware of what’s needed and what’s involved. Schedule regular meetings.
Caring for You
Begin or maintain a meditation practice. If you’re in the thick of caregiving, find ten minutes of quiet time. The easiest way to start is to sit quietly and focus on taking deep breaths. Meditation can be more restful than sleep, so keep doing it, even if you don’t feel results right away. The more you do it, the more effective it is.
• Many long-term care options exist today, making it easier to meet patient needs.
• Medicare has strict limits in place regarding how long it will pay for a patient in the hospital or long-term care facility.
• Transfer of care from a hospital bed is inevitable and a source of stress and confusion for many people.
• For a smoother transition of care, tackle the blueprint for immediate goals.
• Caregivers have ongoing goals, the most important of which is developing a support system.
• Caregivers may need to reassess level of care.
• Visit patients in long-term care facilities frequently and monitor their condition.