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NAVIGATING THE HEALTH CARE SYSTEM
BY PAULETTE JOHNSON
Have you ever had a family member admitted to the hospital, hospice, or skilled nursing facility, and you had no idea what to do to make sure that person received adequate medical In the past five years, I’ve spent innumerable hours with family members who have required all three (hospital, skilled nursing, hospice). As a result, I’ve learned a lot that neither I nor most people know about how the health care Here’s what my husband and I have learned from our “baptism by fire.” Hopefully, our experience will help spare you the frustration we’ve endured and also prepare you to stand up for your loved ones when they really need you. The ER/Hospital Experience
Arrive prepared because you may be there all day or all night. Bring your family member’s ID, medical and insurance cards, two or more copies of a printed list of all medications and when and how they are taken, two or more copies of your family member’s medical history, a bag full of current medications, a power of attorney, a health care directive, and any other necessity if your loved one will be there 12 hours or more, such as glasses, reading materials, toiletries, and Don’t expect your family member’s primary care or other doctors to show up. Many doctors no longer follow their patients in the hospital. They turn their care over to “hospitalists” (physicians assigned to care for patients while in the hospital) or other medical professionals. Some primary care doctors will not intervene or accept phone calls during your loved one’s hospital stay. Still, before your family member goes to the hospital, ask the doctor if s/he will visit the patient in the hospital. Ask about consulting with the doctor during your loved one’s stay and ask if s/he will be in contact with the hospitalists. Some hospitalists will not speak directly with you or return your calls – you’ll have to go through the nursing staff to get messages to them. Ask if an individual hospitalist will follow the patient throughout the hospital stay or if they rotate, so that your family member may see a No one knows your loved one like you do. Therefore, you must become their warrior, Without the primary care physician present, it is up to you to educate everyone who deals with your family member about their medical history, medications, allergies, and even changes in protocol (i.e., if meds that were prescribed caused a bad reaction, the family member should Communication among hospital staff is haphazard at best, and you must never assume the next RN, LVN, CNA or even new doctor has been given all the information. Also, especially if loved ones are elderly, they may give misleading information (such as saying that they are “fine” If you want your family member to have the best care, you must be there! Establish
communications with the hospital staff – especially the hospitalist – and talk to them often. You have the right to ask questions and advocate for your loved one. But be as nice as you can. Most health care professionals are caring people, but they are stuck in a really dysfunctional system and often feel overwhelmed themselves. The system will often push you to the brink. If you cannot remain cool, call in someone from the family who can. Be businesslike – brief and to the point. Don’t take “no” for an answer if it doesn’t make sense. Trust your gut instincts. Hospitalists are paid based on diagnosis, not by length of stay. There is no incentive for a hospital to keep your family member there if it receives the same insurance or Medicare reimbursement for a one-day or a twenty-day stay. For example, women are having four-hour outpatient mastectomies. If you believe your loved one should stay longer than does the hospitalist, then you must advocate for a longer stay. Watch your family member’s medications like a hawk! Don’t assume the ER or hospital doctors will keep up on your loved one’s medication regimen, because they most likely will not. If a certain medication is essential for your family member, you must either ask for it or bring Also, understand that hospitals don’t have access to every medication. They dispense only those medications listed in formularies (meds approved for the hospital by a committee of physicians). If your loved one needs a specific, brand-name (non-generic) medication, you may have to furnish it yourself. Otherwise, the hospital may substitute a similar type drug without telling you. Ask direct questions about meds (i.e., “Is Mom getting Nexium or a substitute?”). Expect that the hospital’s medications list could have errors, especially if your family member Ask to see the medications list, compare it to your own, and ask for explanations for differences and for medication changes on a regular basis. Check the list again if your loved one Finally, don’t expect your family member’s medicines to follow him or her from facility to facility. Hospitals and nursing homes send orders for medications, but not actual meds, to your loved one’s next facility, which could leave the patient without meds for some period of time. If sent to the next facility, or even to home, on a weekend, your family member could be without important meds for two full days. Discuss medications with hospital or nursing homes before your loved one is discharged, and ask the facility to send prescription orders long before The Hospice Experience
A hospice isn’t what you imagine it to be. By definition, a hospice is for patients who are expected to live less than six months, but it is also a business, pure and simple. Although some hospices exist to provide compassionate care, most are medical hospices reimbursed through Medicare. They are allocated a fixed dollar amount per day for care, which means (for example) your family member may see the nurse twice a week instead of daily. We were told that hospices provide “intermittent care,” not “continuous care.” Hospice care may be provided in a nursing home, assisted living facility, or at the family member’s own home. Many hospice companies operate in Ventura County, so shop around, since the service they provide varies greatly from one to another. For example, many hospices will not provide an IV at home. This can be hugely important to your loved one and to you (imagine giving oral morphine to someone every hour for 36 hours). If you need 24/7 help for your family member, you may need to hire a caregiving nurse yourself. Make arrangements for that before your loved one needs it. Think twice before you opt for hospice care! Not all ailments qualify for hospice. Once your family member is enrolled in hospice care, Medicare will no longer pay for skilled nursing home costs, which average over $200 per day in Ventura County. Remember that you (and your loved one) have the right to choose or to quit hospice at any The Nursing Home Experience
Several nursing homes/skilled nursing facilities/convalescent hospitals exist in Ventura County, so shop around — they vary in quality of care. Use online resources that rate and compare nursing homes to help you make the right decision for (or with) your family member. Also, visit the facility before your loved one is admitted to get an impression of its suitability Medicare has limits on what it will cover and the length of stay in a nursing home/skilled nursing facility, which is considered to be an intermediary step between a hospital stay and a return home. Medicare will cover the nursing home’s daily rate as long as your family member has an illness that meets its guidelines and as long as the patient is improving or has hope of improvement. Medicare’s coverage will cease if your loved one has no hope of rehabilitation or Medicare coverage information for skilled nursing facilities can be found at http://www.medicare.gov/publications/pubs/df/10153.pdf. Generally, Medicare will cover some nursing home costs for up to 100 days, with full coverage for just 20 days. Secondary insurance policies, such as Anthem Blue Cross, may pick up a portion of costs not covered by Medicare. As at many hospitals, most primary care physicians will not visit patients at nursing homes. For this reason, you should find a doctor who will follow your family member to the nursing home. Otherwise, the facility will choose a doctor for you, which could dramatically affect the quality of your loved one’s health care. While in a nursing home, Medicare only requires a doctor to visit your family member once a month and, incredibly, some nursing homes do just that. Therefore, contact the doctor and make sure s/he will communicate with you and will be available when your loved one needs to be seen. A nursing home must have a case meeting with a family representative (you) soon after admission. The meeting must include an administrator, nurse, occupational therapist, physical therapist, dietician, and social worker. The meeting must take place after the first assessment, within eight days of admission. Ask for this meeting as early as possible, and ask that those who attend are the people who will be serving your family member. Nursing home personnel may make decisions about your loved one without informing you. It is not uncommon for the physician to change medications, change the discharge date, or stop Nursing home staff may ask the physician to make those changes. They may call in a Establish up front that you want to be notified of any changes in care for your loved one, This is especially important if your family member is physically incapable of doing so or has Visit your family member often – once a week isn’t often enough. Many families think of nursing homes as ‘rehab’ and sometimes don’t visit their loved ones at all. You need to be there for your family member for the same reasons you need to be at the hospital: to monitor medications, observe the quality of care, advocate for your loved one, and Standing with, and for, a family member in the hospital, hospice, or nursing home can be exhausting, not only because you are witnessing that person’s suffering, but also because you must sometimes battle to get what is needed. Some of the many flaws in the health care system are worsened by Medicare and some by insurance company mandates. Regardless, you must be more alert, watchful, informed, assertive, and perhaps more forceful than you want to be. But you really have no choice — your loved one’s life could depend on it.

Source: http://www.vcccdra.net/Navigating_the_health_care_system.pdf

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