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I'd Like to Say: Every Patient Needs an Advocate
By Mary Jo Dangel
Patients who are unable to take an active interest in their own health care can benefit from the assistance of an advocate.

Q U I C K S C A N

Keep Records
Communicate With Others
Be Assertive
Perform Research
Accept Assistance
Don't Overlook Spiritual Needs
Face End-of-Life Issues
From the Heart
Help Available

Every Patient Needs An Advocate

Photo from Creatas

I never wanted a health-care career, but motherhood required me to nurse my children when they were young, especially when my two sons were diagnosed with cystic fibrosis. In order to look out for their health-care rights, I became their advocate.

But it’s not just youngsters who need someone to oversee their health care. I’ve heard too many documented cases of malpractice and witnessed enough medical errors to know that patients need to be advocates for their own health. People who are frail or don’t seem to understand specifics about their health need assistance. In addition, single people who have health problems can benefit from friends and relatives who take an active interest.

The primary caregiver often assumes the role of advocate. But the caregiver is often overwhelmed with other duties and could use some help.

When my 80-year-old mother was hospitalized recently, my four siblings and I informally divided the responsibilities and continually updated each other on our actions. Thus, we were able to aid Mom and reduce some of Dad’s workload without any one of us being overwhelmed.

Some of my friends are coping with seriously ill parents who live hundreds of miles away: That often involves frequent long-distance telephone calls and last-minute traveling. One friend who is an only child seems overwhelmed because she is carrying the entire workload. But at least she doesn’t have to cope with disagreements among siblings over the care of frail parents—something that often causes divisions in many families.

If sibling rivalry becomes a problem, it might help to divide areas of responsibility. For example, one person can be in charge of communications among the patient, medical staff and family members. Separate the management of medical, legal and spiritual affairs among other people. If that doesn’t help, perhaps asking a respected relative or family friend to be a mediator will soften the tension.

In the case of someone whose health is slowly declining, you may gradually assume the role of health-care advocate. But in situations where a close relative or friend has an accident or is diagnosed with a terminal illness, there is no warning.

Following are seven ways you can assist other people as well as yourself.

Keep Records

Experience has taught me to keep copies of all receipts and correspondence (verbal and written) relating to medical services. Documentation is necessary when challenging bills and petitioning insurance companies to cover services that have been refused.

Anyone who has had severe allergic reactions knows the importance of maintaining an updated list of allergies and notifying others. (When people are not likely to remember their allergies, their loved ones need to keep lists.) My older son, Tim, kept updating the list that he carried in his wallet of the drugs to which he had developed severe allergic reactions.

Living with cystic fibrosis taught Tim to be an advocate for his own health care. But when he was in critical condition in the hospital at age 33, I reverted to my Mommy role because he was so weak. I made daily entries in a notebook during that three-week period: names of doctors, test results, prescriptions (name, date started and stopped, dosage, purpose, reactions) and other pertinent information. I also wrote questions to ask Tim’s doctors, along with their responses.

When Mom was hospitalized, I started a notebook for her, too. Then I advised her to use it to keep track of her health care and to write in it any questions she wanted to ask her doctors, as well as their comments. Some adult children I know keep their own records regarding the health of their elderly parents, especially if the parents don’t seem capable of managing their own affairs.

Communicate With Others

If you accompany someone to medical appointments and the patient is unlikely to ask the doctor questions, you may need to do so: How serious is this condition? What are the benefits and the risks of the treatment recommended?

Be aware, however, that the patient may think you are interfering. I know of one elderly woman facing surgery who scolded her daughter for asking the surgeon too many questions. The physician reassured the daughter by telling her that he welcomed questions.

In a compassionate manner, make sure the patient understands his or her diagnosis and options. Does a relative who is diabetic comprehend the risks involved in elective surgery? Does a cancer patient realize he can refuse controversial treatment that carries more risks than benefits? Does a sick friend grasp that a doctor just diagnosed her as terminally ill?

If you want to discuss a patient’s condition with his or her physician, be aware that, due to the Health Insurance Portability and Accountability Act (HIPAA), the patient must give authorization. Because of the seriousness of Tim’s situation, he gave permission during his hospitalization for the medical staff to discuss his condition with his family. Thus, when Mom was hospitalized, I made sure that the proper paperwork was completed, with Mom’s approval.

It is very important for family and friends to show the utmost respect to hospitalized patients to help balance the tremendous loss of dignity that is often experienced from being poked, prodded, bathed, etc. As Tim’s condition deteriorated, I sometimes caught myself not talking directly to him when I visited him in the hospital. You may need to remind yourself and other people not to ignore the sick person.

It’s also necessary to filter what is said in the presence of the patient. For example, even if your loved one is in a coma or doesn’t seem to comprehend what is happening, don’t discuss sensitive aspects of the person’s condition as if he or she were invisible.

I’ve been blessed to be able to lean on my pediatrician daughter, Jenny, whenever there’s been a health-care crisis in the family. She has answered numerous questions and cleared up several misunderstandings.

When Tim was hospitalized, Jenny asked his physicians questions and then interpreted their answers for us laypeople. I always feel relieved when she confirms another physician’s diagnosis and treatment.

Although it’s beneficial to have someone in the medical profession to rely upon, it’s also necessary not to take advantage of such a resource and not to expect answers that should come from the patient’s physician.

Many caring people want to be updated on the sick person’s condition, especially when someone is seriously ill. Whenever my children were hospitalized, I always found it upsetting to keep answering the phone and repeating the same details. I reduced my time on the phone by asking others to pass along the information.

During Tim’s last hospitalization, I found e-mail to be the most efficient way of updating many people at one time. (This direct form of communication reduces the amount of misinformation that often follows verbal messages that are incorrectly repeated.) I always asked recipients to forward my messages. In addition, I politely requested that people not respond to my e-mail or telephone me unless necessary: I was spending very little time at home and didn’t want the telephone line tied up in case the hospital tried to call.

My e-mail messages included a reminder that, because of the deteriorated condition of Tim’s lungs, aromas (flowers, cologne, tobacco) would cause him problems. In addition, I asked anyone who was the least bit sick not to visit.

Be Assertive

During Tim’s hospitalization, I thought his wife, Holly, was being overprotective at first when she insisted on staying with him throughout the night. But numerous problems taught us that, indeed, Tim needed one of us to be with him 24 hours a day to look out for his welfare and speak for him. He was too weak and out of breath to talk for himself. (No doubt, circumstances vary from hospital to hospital. Insurance companies and the shortage of nurses were blamed for many of the problems we encountered.)

I soon learned not to assume anything: Just because Tim’s “code-blue” allergic reaction to lidocaine, a local anesthetic, was in his medical records didn’t mean that the medical staff would know about it or remember it. After all, Tim’s file was thick, and he wasn’t the only patient of the numerous specialists who were caring for him.

Thus, Holly and I repeatedly reminded the medical staff of Tim’s allergy to lidocaine. Even with our reminders, on three occasions when Tim was scheduled for tests that required a local anesthetic, there were no alternatives to lidocaine available. Thus, my son was not anesthetized and endured more pain than was necessary, rather than risk a fatal reaction.

We could have advocated postponing the tests, but we were desperate to find the cause of the unusually high fevers Tim was experiencing.

I know of many health-care advocates who have attempted to prevent mistakes by speaking up, posting signs in the patient’s hospital room that gave explicit instructions regarding what to do or not do, writing on body parts such things as “do not operate on this knee” or “do not put IV in this arm.” Such preventive measures are especially necessary when the patient has restrictions or special needs or isn’t likely to respond.

Perform Research

An advocate can provide a valuable service by investigating and passing along information about drug therapies and treatment options to the patient and others who are interested.

From the time my sons, Tim and Ritch, were diagnosed with cystic fibrosis, I began clipping and filing every related article I encountered. Many friends and relatives have forwarded information they discovered, too.

When Tim became an adult, he was very dedicated to researching his condition, especially when he was contemplating a lung transplant. He met Holly, who is diabetic, after he was placed on a waiting list for a transplant. After their marriage, they became each other’s health-care advocates.

Although my role changed after Tim and Holly were married, I continued researching cystic fibrosis and lung transplants to help me understand what was happening. The three of us kept each other informed, in the event one of us discovered something the other didn’t know.

But when Tim was hospitalized, he was incapable of doing any research. Since he was facing new problems, Holly and I asked his doctors lots of questions. I frequently asked the doctors and my daughter to spell the names of drugs, infections and tests.

I found much information in the updated medical manual I had purchased a few years earlier—a comprehensive one written for laypeople. (These make great gifts that people seldom think of requesting.) Libraries and bookstores have an abundance of medical literature, too.

Accept Assistance

When someone is seriously ill, family tensions often arise over such decisions as who will care for the patient. If there is stress because some people don’t seem to be doing their fair share, creating a schedule can divide responsibilities more evenly.

For information about available services, your telephone directory is a good place to start. Recommendations from people you know often prove to be the most beneficial.

Asking for—and accepting—help can be very difficult for many sick people and their loved ones. They may oppose applying for financial assistance or allowing strangers to provide nursing care or deliver meals. Their resistance may involve more than wounded pride.

For example, Holly and I begged (and nagged) Tim to apply for a permit for handicapped parking. We used all the logical reasons, including the fact that anyone who was on oxygen and waiting for a lung transplant deserved handicapped parking. When he finally did apply, I realized why he waited so long: That permit was a painful reminder of how sick he was.

When Tim was waiting to receive a lung transplant, it became obvious that I would need to stay with him and Holly during his recovery in St. Louis, hundreds of miles away. Thus, I investigated what was involved for me to take a medical leave of absence and alerted my employer in advance. Although it wasn’t easy for Tim to accept my offer, he knew it was necessary.

When Mom was released from the hospital and feeling unsteady, we de-cided she could benefit from installing handicapped equipment in the bathroom. In addition, one of my brothers contacted a service that leases personal emergency response systems (PERS), also known as medical alarms.

The Federal Trade Commission’s Web site explains how a PERS works and offers guidelines. Most systems contact one or more preselected emergency telephone numbers when the user presses a button on the transmitter, which is worn or carried. When selecting a system, investigate more than the cost: Make sure it is easy to use, and ask if it is water-repellant so it can be worn while bathing—a time when problems often arise.

Don't Overlook Spiritual Needs

When people are in frail physical health, their spiritual needs may change. For example, when someone is hospitalized or homebound because of declining health, the person’s parish needs to be notified. (Due to HIPAA, the patient’s privacy is protected and hospitals cannot inform parishes when a parishioner is admitted.) Specify if it is O.K. for the parish to publicize the information, such as a notice in the bulletin or a mention in the General Intercessions at Mass.

If you are asking a chaplain or priest to visit, explain the patient’s condition: Does a homebound person want to go to confession? Is someone requesting the Sacrament of Anointing the Sick before surgery? Is a patient able to swallow so he or she can receive the Eucharist? If someone doesn’t visit within a timely manner, call again—the message may have been misplaced.

Family members of a hospitalized patient are often falling apart emotionally. Remind them that the chapel can offer solace and that they cannot ignore their own needs.

When my mother was released from the hospital, my youngest brother, who is a eucharistic minister, brought her Communion each Sunday until her health improved and she was able to attend Mass again.

It may be necessary to investigate which parish best meets the needs of someone who requires handicapped facilities, such as a wheelchair ramp. During Mom’s recovery, I reminded her that my parish has an abundance of handicapped parking. (She already had a legal permit to use such parking spaces.)

Prayer can be consoling for the patient and the family. One family prayed the rosary in the hospital room of a relative who was dying because they knew of her devotion to that form of prayer. A patient devoted to reading Scripture might be comforted by listening to a loved one read an appropriate passage, such as “The Lord is my shepherd...” (Psalm 23).

Some studies have shown that prayer has a healing effect. I know of one parish that alerts infirm parishioners when prayers are being said for them by furnishing vibrating beepers to be worn by the shut-ins. Whenever someone says a prayer for one of these homebound parishioners, the prayer phones the beeper. Thus, the sick person knows a prayer is being said by feeling the vibration but doesn’t have to learn how to operate the beeper. Although this practice may be too costly for some parishes, it’s an idea families might want to adopt.

Some patients are soothed by healing touch or music therapy. Even if people are comatose or near death, they might enjoy listening to recordings of their favorite music, religious and secular.

Ask if there are other ways you can offer spiritual assistance to someone who is seriously ill. Above all, be sensitive to what the patient would enjoy.

Face End-of-Life Issues

It’s less stressful if legal and funeral arrangements have been made before a terminal illness is diagnosed. The American Bar Association stresses that it’s not enough for people to explain their health-care wishes to their doctors and loved ones. A written Health Care Advance Directive serves more purposes than a medical directive, also known as a living will. This comprehensive document combines the health-care power of attorney, medical directive and other information, such as instructions about organ donations.

About five years ago, my husband and I updated our wills and completed additional legal work. We encouraged our adult children to do the same by giving them legal “gift certificates” for Christmas that year.

Thus, when Tim was near death in the intensive care unit, Holly and I knew his wishes when his doctor asked us to sign the do-not-resuscitate form in the event that Tim’s heart stopped. (First, the doctor explained in detail why she was making this recommendation.)

Tim’s death at age 33 was unexpected. While we were trying to cope with our grief, we had to make all funeral arrangements, including selecting a cemetery plot.

Therefore, if your loved one expresses a desire to plan all or part of his or her funeral, including the liturgy, ask what you can do to assist, even though you’d rather change the subject. In addition, if there are broken relationships involving the terminally ill person, you might be instrumental in helping to heal them before it’s too late.

Hospice has an abundance of beneficial information for patients and families facing death. These include preparing for death, helping children cope and healing after a loss.

In addition to all the things that need to be done when someone is dying, the gift of your presence is important.

From the Heart

Being a health-care advocate is something we have a right and responsibility to do. It involves more than sending flowers or making visits to someone who is ill. Being an advocate requires taking an active role in an effort to enhance a patient’s medical treatment. It may be the greatest gift you can give.

Even if the patient doesn’t recognize your efforts, recall St. Paul’s words to the Colossians: “Whatever you do, do from the heart,...knowing that you will receive from the Lord the due payment of the inheritance; be slaves of the Lord Christ” (3:23-24).    

 

The Internet is a great resource when researching health-care issues. Following are some that you may find beneficial.

One of my favorite Web sites for reliable medical facts is The University of Iowa’s Virtual Hospital. Others that may prove useful include The National Institutes of Health (phone: 301-496-4000) and The Catholic Health Association of the United States.

If a patient needs to resolve an issue with an insurance company, employer or creditor, the Patient Advocate Foundation (phone: 800-532-5274) is a nonprofit organization that offers assistance.

For researching topics related to older people, The National Council on the Aging, U.S. Administration on Aging and AARP (phone: 888-687-2277) have an abundance of information.

For facts and advice about legal issues, the American Bar Association is a valuable resource.

If you are faced with someone who is terminally ill, Hospice focuses on palliative care and grief-management issues.

 

Mary Jo Dangel is assistant managing editor of this publication. She earned a bachelor’s degree in communication arts, with a concentration in science, from the College of Mount St. Joseph in Cincinnati, Ohio.


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