3
Before You Leave the Hospital
The Five Essentials of Smart Discharge Planning
FOr The Best Transition from the hospital to home (or wherever your next care setting may be), you need to begin formulating a plan while you are still in the hospital. And, because there are so many details to consider, you and your loved ones should plan as far in advance as possible. Waiting until you’ve left the hospital to start determining what you need isn’t going to be pleasant for anyone, and the distraction won’t help your rehabilitation either.
The first thing to do is to start a conversation with the doctors, nurses, and therapists caring for you in the hospital. Although it’s generally hard to predict when any patient will be discharged from acute care, if your health care team knows that you and your loved ones are actively developing a plan for the next phase of your recovery, they will be more receptive to keeping the family in the loop. You’ll also need their help with referrals, and the sooner your caregivers start discussing options, the better they will be able to help you and your family.
Every hospital has a department dedicated to discharge planning (also referred to as patient and family services, case management, or social work and discharge planning). This department is made up of social workers and nurses whose expertise is helping you coordinate a smooth transition from the hospital to your next destination.
A discharge planner can provide emotional support and counseling, assistance in navigating the health care system (which can save you time and money), and referrals to a multitude of diverse community resources for additional help. Local vocational rehabilitation services programs, where you can discuss your job opportunities, are excellent resources, especially if you need to change your occupation (more about this in chapter 15). In most hospitals, a discharge planner will visit you and your family within one to two days of your admission. If that doesn’t happen, be sure to let your care team know you would like to meet with one.
As your discharge date gets closer, your discharge planner will return to ensure that a continuity-of-care plan is in place, including follow-up appointments with the appropriate doctors and therapists as well as any other services that you require.
In addition, every hospital has at least one officially designated patient advocate. That person can be a resource for you and your family on a wide range of issues that affect your experience as a hospitalized patient—from answering questions about medications, physical therapy, diagnosis and prognosis; palliative care options; whom on your medical team to contact for specific concerns, and so on. It’s best to schedule a meeting with a patient advocate early in your hospitalization.
Hospitals are busy places. The more conversations you have with members of your team, the more comfortable you will be with the discharge process. Some people think asking questions in a hospital is an intrusion into the important work of doctors and nurses. But actually, the best health care professionals like it when patients and families speak up. It helps everyone do a better job.
The Five Essentials of Smart Discharge Planning
What I’ve determined, from my own experiences as a doctor and patient, and my conversations with other patients over the past ten years, is that there are five essential questions to answer as you approach the day when you will leave the hospital:
1. When should you begin planning for discharge? The answer is simple: as soon as possible. The process will take much longer than you might think, so try to be patient. Being hospitalized with an ANI suddenly forces you to wait for other people, and you will discover there is a real art to waiting. The first step is to lose your ego. Then, you’ll need to learn to be patient, which I did by staying busy. For example, develop a stretching and exercising routine, work on dexterity by trying to pick up your medications or paper clips, or strengthen your hand muscles by squeezing a foam ball.
2. Where will you be discharged and perform rehabilitation? There are three choices for most patients: home, a rehabilitation hospital, or a nursing home. Among the criteria that determine which will be best for you are the extent of your recovery, your medical problems and physical injuries, your ability to perform rehabilitation, the state you live in, the types of facilities near your home, and your health insurance. Your inpatient rehab team will make strong recommendations based on their knowledge of your current and future recovery, as well as their experience referring patients to specific rehab hospitals and nursing homes. In addition, for both nursing homes and in-patient rehabilitation hospitals, you should make your choice on the basis of the quality of caregivers, the ratio of therapists and nurses to patients, the number of hours that therapy is offered during the day, and statistics from the State Department of Health or national rating services such as U.S. News & World Report and Leapfrog Hospital Safety Grade.
There are two other key factors that should be important in your decision-making:
Continuity of care. In many hospitals, nurses work three 12-hour shifts each week and rarely see the same patient more than once or twice each week. But an excellent rehab facility will have the same two or three people assigned to you for every shift, which creates consistency that improves the safety of your care and gives them a better understanding of how to help you improve and regain function.
Choosing the facility. If possible, have your family visit the facility to determine whether it meets your personal criteria. It was important to me to choose an inpatient rehabilitation hospital that specialized in SCI. I wanted to start as soon as possible, which meant that I would be performing rehab while still on a ventilator. I also wanted to choose a highly rated hospital in a city where I would have friends and family nearby, which is how I ended up at Kessler Rehabilitation Center. Before I made my choice, my family was able to visit the facility—they liked what they saw and knew it would be a great choice for me.
• Home: Almost everyone wants to go home after being in the hospital. If your team believes you are ready to go home, the biggest issue will be accessibility. If you lived in an older home before your injury, the cost of remodeling to make it accessible may be prohibitive, so living in an accessible apartment while evaluating your options can be the most cost-effective approach. After my injury, my wife immediately started looking into the possibility of renovating our home, but it quickly became clear that making the house accessible would be too expensive. So she began the process of finding a place with a first-floor bedroom and bathroom. We were fortunate to find the perfect townhouse: It already had a ramp to enter the house and the wide hallways and doors that a person in a wheelchair requires. The only renovation we needed to do was to convert the existing shower to a roll-in shower. Whatever decision you make, have an occupational therapist review the areas that need to be the most accessible (bathroom, bedroom, kitchen, and entrance). They will have lots of helpful tips and suggestions on furnishings, devices, and so on, and they may also be able to suggest resources to help pay for some or all of the changes to your living space.
• Rehabilitation facilities: In some states, inpatient rehab facilities are freestanding hospitals. Kessler, where I was transferred after my ICU hospital stay, fits this description because the only patients there are people with SCI or TBI. Both freestanding rehabilitation hospitals and inpatient rehabilitation units in larger hospitals usually treat patients who are medically stable. For example, if you need telemetry to monitor your heart rate and rhythm, you would not qualify for this care. Some states, like New York, only permit not-for-profit hospitals, which excludes many rehabilitation hospitals. New York also doesn’t allow long-term acute care hospitals, which is what most rehab hospitals are. If you live in a state that doesn’t allow these types of hospitals, your options are to go to a nursing home or a long-term chronic care facility, such as a county hospital, or to travel to a hospital out of state.
• Nursing homes: If you are severely injured, you will likely be discharged from the hospital to a nursing home, because the seriousness of your injuries prevents you from engaging in rigorous rehab. If you have a medical problem, such as heart failure or a pressure ulcer that makes you a poor candidate for intensive rehabilitation, you may also go to a nursing home. Some nursing homes have special rehabilitation units that include physiatrists, occupational and physical therapists, and speech and language pathologists. In states that don’t have freestanding rehab hospitals, the only choice for people on Medicaid is to go to a nursing home for long-term recovery.
3. Who will take care of you after you are discharged? Contemporary rehab care requires an entire team of health providers working together. When you are in the hospital ICU, the physician specializing in your care is usually a trauma specialist or neurologist. A change in your attending physician usually occurs when you are transferred to a specialized rehab unit. The rehabilitation physician is usually a physiatrist who has completed a residency in physical medicine and rehabilitation (PM&R). They are responsible for treating medical issues, formulating therapeutic goals, interacting with your other health care providers, and discussing your progress with you and your loved ones.
The other members of the team usually include nurses and aides; therapists with expertise in physical, occupational, speech, and recreational therapy, as well as vocational rehab; psychologists; social workers; and a case manager. Additional team members may include a driving instructor, peer mentor, nutritionist, and equipment specialist. Every member of your health care team should consider your family additional team members.
If you are discharged to your home, you may need referrals to specialists in addition to your primary care physician (PCP), because you may need to see a physiatrist, a neurologist, a pain specialist, and possibly a urologist and a gastroenterologist. You may not be able to find doctors with specialized training, but it is worth inquiring while you’re still in the hospital. You will also need a referral from your PCP or physiatrist for physical and occupational therapy. Your doctor will likely recommend an ambulatory rehab facility near your home, but you should spend time interviewing some of their therapists to determine that the facility has well-trained clinicians with expertise in your particular injury.
Once you are discharged from the hospital, you will be responsible for many aspects of your own care. At home, someone needs to help you attend to the everyday issues of personal hygiene, pain treatment, medications (especially the side effects), sleep, nutrition, rehabilitation therapy, and exercise. Have the hospital’s discharge planner identify the social workers in your community with the right expertise, and the home care and rehabilitation options that you’ll need. Depending on your situation, these may include someone to drive you to and from work and to appointments with your doctors, therapists, and other health care providers (acupuncture, exercise classes, massage, nutritionist, and so on). With the help of your discharge planner, you can learn what services are available in your community, how to get them, and how to pay for them. While your health insurance will be the primary source of money to pay for these expenses, a social worker and case manager will be important to help you identify other ways to pay for your needs, such as workers’ compensation, Medicare, Medicaid, and vocational rehabilitation.
You may also want to consider hiring a home aide. A week before I was discharged, I interviewed several home aides recommended by friends, medical colleagues, and social workers. I was fortunate to find a certified home health aide who had previous experience working with paralyzed individuals. The industry standard for certification programs in home health is 120 hours of classroom training and 40 to 60 hours of clinical work. She stayed with me in the hospital from morning to night for several days to learn my routine from the nurses and aides. She learned how to transfer me in and out of my bed and wheelchair, get me dressed, change my night and day urine collection bags, and help me in the bathroom.
4. What types of durable medical equipment (DME) will you need to purchase or rent? While you are in the hospital, you and your team will figure out what DME you’ll need after you leave the hospital. Social Security defines DME as equipment that can withstand repeated use, is used primarily to serve a medical purpose, and is appropriate for use in the home.
Nothing is more important than choosing the right wheelchair, because you will spend most of your day in it, and you’ll need it to last for at least five years. The critical issues in choosing an electric wheelchair to consider are ease of controls, the ability to tilt the chair for pressure relief, the nature of the driving mechanism (so that you can be confident going up and down steep inclines and through tight doorways), whether it can change your height off the ground for social occasions, and so on (see chapter 15 for an in-depth wheelchair guide). It can take several weeks for a customized wheelchair to be delivered, so you should begin the process of purchasing one at least one month before discharge. For a push wheelchair, the options are fewer, but the process is very similar. You must test the chair to make sure it fits you well, that the foot rest is comfortable, the chair is light enough to make it easy to push but sturdy enough to be stable for transfers, and that folding and storage are easy to perform.
Choosing Equipment for Discharge
Because I was a tetraplegic, I had to choose an electric wheelchair while I was in rehab, because they are manufactured to individual specifications and some of them are made overseas. My rehab facility had several different models to test. After two weeks of testing six models, I decided to purchase the Permobil wheelchair, because it was easy to drive in a straight line and it fit me well. Because these wheelchairs are made in Sweden, mine didn’t arrive for six weeks after I placed the order. That meant I needed to rent a wheelchair for at least a month. For my health insurance to pay for both the permanent chair and the loaner, my doctors and therapists needed to justify why the Permobil chair was the one I needed and write a prescription. This may be the case for you, too.
Most patients don’t have the equipment necessary for them to function well at home. I certainly didn’t. I needed to purchase a hospital bed, a shower chair that could also be positioned over the toilet, a commode, and a Hoyer lift to move me from my bed to my wheelchair. To make decisions about my DME, I was assisted by my physical therapist and a local sales representative whose company specialized in DME.
For transportation to medical appointments, your job, social events—whatever the need may be—you might require a special vehicle. The design of the vehicle (often a van) will depend on your physical abilities, especially your hand and arm function. Most people with an ANI will be able to drive using normal cars fitted with adaptive hand controls. These can be as simple as a device that makes it easier to turn the wheel, or as complex as $40,000 hand controls that help you use the brakes, gas pedal, signals, mirrors, wipers, and radio. If you have severe disabilities and are in an electric wheelchair that weighs at least 300 pounds, a van will be necessary so that you can enter and exit the vehicle via a ramp. If you are moderately disabled (especially if your upper arm strength is weak, making transfers difficult), you may prefer a driver’s seat that rotates to facilitate transfer from your wheelchair to the driver’s seat. In my case, driving is too much of a mental and physical effort to make it worthwhile, so I arrange for a driver to take me to my appointments. While that can be inconvenient at times, safety is always my first priority.
After an ANI, you will be introduced to the world of assistive devices. You’ve probably already used many of these without even thinking about it, such as a TV remote. The most important assistive device I used in the hospital was my laptop computer with Dragon Dictation Software that I used to answer emails. When I returned to work, I wanted to start using all of the programs I had used pre-injury, such as Microsoft Office, but I found that my computer’s touchpad and mouse were too difficult for me to manipulate. Because there are so many computer manufacturers and even more types of mice, it will be helpful for you to experiment with several options.
The perfect solution for me appeared in April 2010, when the first iPad was introduced. With the iPad, I could perform many functions just by gently moving my finger, which was good for my physical therapy and gave me greater independence. Now, there are numerous handheld devices and apps. You’ll find a list of them in the Resources on page 283. If you can’t afford to pay for them, your employer may be able to; make sure to check with your social worker and your health insurance company.
5. Why does it take so much time to figure out how to pay for everything? There are two reasons why paying the bills after an ANI takes so much time. First, it’s very expensive, so you will usually need more than one insurance product. Second, there are many insurance forms to fill out, especially if you have specialized medical or physical disabilities. For many people, an ANI is not only a catastrophic physical event but also a financial one. Depending on the nature of the injury, costs can exceed $100,000 in the first year. So it’s important that you have health insurance to help you pay for these costs.
Figure 11. US healthcare coverage: ACA (Affordable Care Act), CHIP
There are four public insurance plans that cover about 40 percent of US citizens: Medicare, Military, Medicaid, and Children’s Health Insurance Program (CHIP). Nongovernment insurance includes employer-based insurance, which includes about 48 percent of US citizens. The remaining 12 percent are either uninsured or have other types of insurance as indicated.
As soon as possible after you are admitted to the hospital, you and your family should work with your social worker to assess your health insurance plan. If you qualify for public insurance, a social worker can help you apply. If you are over sixty-five, you and your social worker should work to determine your eligibility for Medicaid or Medicare. If you have employer-based insurance, ask your employer’s human resources representative to work with you and your insurer. You will likely be assigned a case manager from the insurance company to work with you, your family, and the hospital to facilitate your care in the hospital and plan for your care after discharge. This person is also called a designated claims adviser or benefits provider. They must clearly understand your therapy needs, because they will be your advocate when it comes to using your benefits and getting the most coverage out of your plan. A good case manager will want to know your previous health history, learn the risk factors you have for secondary complications and arrange for preventive therapy, and understand the necessary treatments you need to maintain your health. This kind of approach with your insurance company is a win-win—you obtain the services you need and the insurance company spends less money on acute care because you will be less likely to be readmitted to the hospital.
If your injury is severe and you’re unable to return to work, you have three options. First, if you were employed at the time of your accident, you may have disability insurance that begins one to three months after you stop working and pays you 50 to 75 percent of your salary. This is the time to notify that insurance company of the need to file a claim. Second, if you do not have disability insurance and you are permanently disabled, you should sign up for Medicaid Social Security Disability Insurance (SSDI). SSDI payments are made on the basis of financial need. SSDI does not pay for hospital care directly; rather, it enables you to pay for essential expenses such as your mortgage, gas and electric, prescription drugs, and vocational rehabilitation. The process of obtaining SSDI, Medicaid, or Medicare is slow, so start the applications as soon as you’ve evaluated your financial resources and expenses. Third, take a look at your life insurance policy; if it’s a whole life policy, you should be able to take money from it to use for current health expenditures. While this will reduce the final value of the policy, it can provide necessary money if you need it.
If you have no insurance, the hospital will assign a social worker to help you apply for Medicaid (if you qualify), purchase insurance on the health exchange (if you can afford it), or work with you on a payment plan that may include charity care (in which case some of your charges will be paid by the hospital). You will have a lot going on, and it may be difficult for you to remember everything, so be sure that someone on your team takes notes and keeps a record of all of these meetings.
Navigating the health insurance system can be difficult. Your case manager can confirm what your insurance policy pays for, what it doesn’t, what portion is a copay that you are responsible for, and so on. Communicating with your insurance provider can be tricky, so be prepared to spend hours on the phone, if necessary. The good news is that you can have the social worker in charge of your continuity of care initiate meetings with your insurance company’s case manager, with a family member acting as your advocate. Your social worker will be able to ensure that you have the coverage you need, and a good case manager will work hard to get you the best care for the lowest cost.
Whatever kind of health and/or disability insurance plan you have at the time of your injury, your social worker will want to obtain a copy of it to review the full explanation of your insurance benefits (EOB). Your social worker should also set up a meeting in which you, the social worker/discharge planner, and the insurance company’s case manager review the EOB. To prepare for this meeting, ask the doctor overseeing your care in the hospital to refer you to the outpatient services you will need after discharge, such as physical therapy and speech therapy. Your doctor’s written referral is required for your insurance plan to pay for care, whether partially or in full. This means not only that the insurance company has what it needs to process the claim but that the therapist can provide feedback to the physiatrist to update the therapy prescription as needed. Have a family member or aide at that meeting to take notes and to highlight relevant sections of the EOB. Record every interaction with your insurance company and date it. It can also help to have a large envelope where you can keep copies of prescriptions for therapy, medicine, and devices, as well as any bills you receive for co- or full payment for any of those items.
If you are being discharged to a rehab hospital or a nursing home, you’ll want to know how many days of coverage are allowed for inpatient hospitalization, and if you can go directly home, the coverage for ambulatory and home health rehabilitation. Find out if your policy allows you to use a facility that is out of state, because there may be a better out-of-state facility that specializes in your injury. If you can, find out the maximum number of days allowed in the rehab facility and if there is a lifetime cap on the number of days allowed in each care facility.
Your social worker will also look at what your insurance allows regarding your choice of hospitals and doctors. Many hospitals are part of larger networks that encompass broad geographical areas. Within these networks, there’s usually one large hospital that handles the most serious patients. For example, my accident happened less than ten miles from the F. F. Thompson Hospital in Canandaigua, but because I needed a Level 1 Trauma Center, I was airlifted to the largest hospital in the area, Strong Memorial Hospital, in Rochester, forty-five miles away. This hospital has specialized personnel, equipment, and facilities to treat Level 1 trauma patients (which often includes SCI and TBI patients) and is a comprehensive stroke center.
It’s not unusual to hear that dealing with the insurance company is hard work, but your primary focus should be on recovery and rehabilitation, not on the ins and out of your insurance plan. Reach out to the members of your health care team who are experts at navigating health insurance, and let them lift the burden so you can put your energy into healing and recovery.
Once you are ready for discharge, your next challenges will be to continue your functional recovery, maintain your health, and work on changes in your lifestyle that promote wellness.
Everything You Need to Know
Discharge from the hospital is an exciting prospect, but it’s one that requires planning with as much lead time as possible. Begin discussing the options with your hospital health care team as soon as possible. Whether the next phase of recovery results in discharge to a rehabilitation hospital, a nursing home, or your own home, you’ll need to consider the five Ws of smart discharge planning: When, Where, Who, What, and Why:
• When: When should you begin planning for discharge? Even though your initial focus will be on simply getting out of the hospital, don’t wait until then to start making arrangements for the transition. You and your family should begin these discussions with your physician and therapists as early as possible.
• Where: Where will you live once discharged from the hospital? Is your home set up for your current physical disabilities? If you go to a nursing home, and if you’re able to choose it, ask your physician for a recommendation. If your insurance allows you to go to a specialized rehabilitation hospital before going home, consider the advantages, even if the facility is out of state.
• Who: Who will care for you when you are discharged? Who will oversee that care? If you will be discharged to your home, your loved ones will need to ensure that home care arrangements are in place, as well as outpatient therapies. You may also need to get referrals to medical specialists if your only doctor is a primary care physician. Ask for those referrals while you are still in the hospital.
• What: What types of medical equipment will you need after you leave the hospital? A wheelchair? Ramp? Specially equipped car? Work with your therapy team to make those decisions, and work with the social worker and case manager to determine how they will be paid for.
• Why: As you face the exciting yet nerve-wracking prospect of finally being discharged from the hospital, you will be entering a new phase of recovery that can be difficult physically, mentally, and emotionally. The fact that this is the time that you have to arrange for health care coverage and insurance is an unfortunate consequence of the US health care system. It’s best to work closely with your social worker (and case manager, if you have one) to choose which insurance coverage and insurance plan are best for you. If you find yourself asking, Why am I putting myself through this?, remember what you have to gain—for yourself, your family, and for other people with disabilities who will look to you for inspiration.