The Hows and Whys of Patient Advocacy

Like most people, you probably know or know of someone hit by a personal tragedy that has left him or her gravely ill or injured. Or you know someone with a chronic ailment that can lead to severe disability and/or death. In the vast majority of situations like these, people get the medical care and other help they need. But too often, they do not, and the lives of the individuals involved — and their families and friends — are critically and negatively affected. We believe that how well these situations are resolved is directly related to two sets of interventions and how well they are carried out. The first you might call “tragedy advocacy action” — someone undertakes to advocate or act for the individual who is unable to act for himself or herself. The second you might call “tragedy preparation action” — we make certain preparations so that if someone has to act on our behalf, we’ve made it easier for them to do so. That “someone” is known as a patient advocate. But what is patient advocacy and what exactly does it mean to hold that responsibility? Below we provide some patient advocacy examples.

What is patient advocacy?

A patient advocate is usually a family member or close friend of the patient. Sometimes an acquaintance may fill the role, or a professional may be hired. In any case, the advocate accepts responsibility for making certain that the patient’s rights are protected, that medical care is appropriate and given in a timely manner, and that all benefits due the patient (including financial benefits) are provided. As if this weren’t difficult enough, the advocate must often work in an environment burdened with grief, stress, confusion, anxiety, and anger.

The main goal of this article is to make the advocate’s job easier by explaining what is involved. The article should also help the health professional better understand the advocate’s role, to the benefit of both. Finally, the article explains what each of us can do now to lighten the load for a patient advocate we might need in the future.

When is a patient advocate needed?

We believe there are at least four levels of events that call for a patient advocate.

Level one events are situations that are life-threatening and in which an individual is unable to act on his or her own behalf. Such situations include accidents or conditions that make an otherwise competent individual unable to make decisions for a prolonged period of time. The individual might be unconscious, in a coma, or heavily medicated.

Level two events include situations in which a person is temporarily unable to act for himself or herself because of, for example, severe physical or psychological trauma. The situation is not immediately life-threatening, but immediate decisions have to be made about treatment, and the individual is temporarily unable to make these decisions.

Level three events include situations in which competent individuals are unaware of their rights, available benefits, and treatment options. The individuals might have medical conditions such as cancer, severe arthritis, or heart disease that can lead to prolonged incapacitation and/or eventual loss of life.

Level four events involve situations in which individuals lack the mental ability to make decisions related to their rights, treatment, and benefits. These individuals might have medical conditions similar to those presented in levels two and three.

Advocacy in action

What a patient advocate needs to do depends a great deal on the situation. Here are real-life examples of advocates in action at the four different levels we just outlined.

Level one

Recently, the senior author of this article received a frantic call from his son’s wife asking for help. Her husband had been thrown from a horse and lay near death in a hospital more than 500 miles from the author’s home. As you would expect, the author hastened to his son’s side.

When he arrived at the hospital, a Level I Trauma Center, he found that his son had several fractured ribs, bruised lungs, and a fractured clavicle; had significant breathing problems, which required his being strapped to a roto-bed (which rotates every few minutes to foster breathing); had a tube in his throat to keep his airway open; and was in a drug-induced state to ensure he remained completely quiet while machines assisted his breathing and monitored all important bodily functions. His son remained in that state for three long weeks. There were numerous minimal ups and many critical downs in his condition, accompanied by many very close calls with death.

By the author’s account, when he first saw his son, he experienced a feeling he described as “terror.” Tears welled in his eyes and a feeling of helplessness overwhelmed him. A person who likes to be in charge, he found himself in an unfamiliar and frightening situation in which all decisions related to his son’s life were being made by strangers. At that point he determined he would become part of the treatment team. He would, indeed, become his son’s “patient advocate.”

In that role, the author was able to carry out the following, important interventions over the course of his son’s hospital stay:

  • He made certain he was known by the hospital administrator.
  • He made certain he was known by each treating physician and all other members of the treatment team.
  • He made himself known to and became accepted by the nursing staff.
  • He called the trauma center’s chief when he felt his son was not doing well.
  • He requested the chief’s help in getting a more dynamic roto-bed, which proved to be the most important medical decision in the whole course of treatment.
  • He got permission to attend daily “rounds” along with his wife, so they could be present when the treatment team discussed their son’s progress.
  • He visited the rehabilitation center and met its director.
  • He requested that his son, when ready, be transferred to the rehabilitation center rather than to a regular hospital bed.
  • He requested that the physiatrist (rehabilitation physician) evaluate his son at his son’s bedside.
  • He got the physiatrist to approve his son’s transfer from the trauma center to the rehabilitation center.

As a result of the author’s patient advocacy, two weeks after his son was transferred to the rehabilitation center, he had recovered enough to go home.

Level two

A woman received a telephone call telling her that her husband had been in a severe traffic accident and was currently being evaluated in the emergency room of a local hospital. When she arrived at the hospital, her husband was lying on a gurney, stripped, bleeding, in shock, generally unable to think or respond reasonably, and in intense pain. The hospital staff told her that her husband hadn’t been given any pain medication because they had not yet taken full-body x-rays. They also told her that a decision had been made to amputate her husband’s leg. This decision had been based on the opinion of the trauma surgeon, who said that her husband’s recovery would otherwise be extremely slow, he would not walk again with or without walking aids, and the leg might still need to be amputated later on.

She very quickly made the decision to become her husband’s patient advocate and did the following:

  • She refused to give consent for the amputation, opting for long-term treatment and care.
  • She consulted with a plastic surgeon about other injuries to her husband and agreed to surgery to reset his broken nose, sew his thumb back on, and sew up lacerations on his chin and nose.
  • She arranged with the HMO that her husband be discharged not to home but to a skilled nursing facility where he could get both physical and occupational therapy.
  • She diligently monitored pain medicine use in the nursing facility to be certain it was given as prescribed.
  • She arranged with the HMO to get a transcutaneous electrical nerve stimulation (TENS) unit to better manage her husband’s pain.
  • She arranged with the HMO to keep the TENS unit, arguing that it would be less expensive to do so than to continue to pay for extensive use of pain medicines.

Following a long, intensive, and aggressive recovery program, which she monitored very closely, the woman’s husband, although still experiencing some pain, is able to walk without any walking aids and to do so without a limp. In addition, his face shows only minimal signs related to the plastic surgery.

Level three

Recently, a man dying of cancer was introduced to one of the authors. By the man’s own account, he had been diagnosed with a melanoma in l995. (Melanoma is the most serious type of skin cancer.) After he’d been off work for several months, his condition improved and he returned to his job. Soon, however, his cancer returned. Again, he lost time from work. This continued for several years, during which time he continued working when he could and paying into Social Security. Recently, however, he was informed that his Social Security benefits were in doubt. This made him extremely fearful about the future of his 12-year-old son. He was at a total loss as to how deal with his situation and was becoming increasingly distraught. This was negatively affecting his already critical medical condition.

The author was able to reconstruct the man’s treatment history and obtain valid documentation to convince Social Security that the man was eligible for Social Security Disability (SSDI) benefits. Ultimately, he received his SSDI benefits as well as benefits for his son (children under 18 are eligible for dependent/survivor benefits). His emotional distress lessened significantly. Had he not found the author, and had the author not taken on the role of patient advocate, it is doubtful the outcome of this case would have been as favorable.

Level four

A very poorly educated man with a diagnosis of severe lung disease had basically no financial resources and was at a loss as to what to do. By chance, he met one of the authors and asked for his help. The author immediately became the patient’s advocate. The author then learned that the patient had paid into a pension plan many years ago. After some research the author found that the man was eligible to receive benefits in either regular payments or as a lump sum.

Because it was not clear how long the patient might live, the author advised him to talk to a financial planner before deciding how to take the money. He was referred to a financial planner, who provided services at no charge. The planner advised him to take the lump sum, invest it, and receive distributions as needed.

In continuing to work with this patient, the author discovered two more important things: Social Security had denied him SSDI benefits, and he did not have a will. The author helped locate an attorney who assisted the patient when he appealed the SSDI ruling; the appeal was successful. The author also helped the patient obtain the services of another attorney to prepare his will at no charge.

How to be a patient advocate

All four of the above stories emphasize the importance of knowledgeable, committed, aggressive patient advocates. If you ever find yourself in the role of advocate, keep in mind that, as in these stories, different situations will require different actions. Still, it is important for the advocate to become familiar with the broad range of actions that can be involved. The following actions, though not the only ones you’ll ever need, are certainly needed for successful patient advocacy.

Reach out to key persons

Know the name, address, telephone number(s), fax number(s), and e-mail address(es) of each of the key persons involved with the patient you are advocating for. Make certain they all know you and know your exact relationship (personal and/or legal) with the patient. If they know you and like you, and if you can gain their respect, you’ll get much more cooperation and better information from them. You will also find yourself in a better position to be involved when tough decisions have to be made.

Key personnel can include the following:

  • The primary-care physician (PCP). The PCP often knows the most about the patient’s condition, current and proposed treatment, and prognosis. The PCP usually has access to the medical specialists and can be very helpful in getting you access to them when necessary. The PCP will usually be happy to have your input.
  • Medical specialists. These can be cardiologists, rheumatologists, neurologists, or surgeons, among others. Access to the specialists is always important, but more so in level one and level two situations, in which critical and immediate medical decisions are required. Like PCP’s, specialists will most often welcome your input, especially if you have access to the patient’s treatment instructions. (For more information on treatment instructions, see “Preparing for the Unforeseen.”)
  • Primary and secondary care nurses. Nurses provide the everyday, hands-on care so critical to the patient’s treatment. They usually know a great deal about thor thpatient’s condition and can be very helpful in keeping you up-to-date on his or her progress.
  • Facility administrators. Knowing key administrators of the facility the patient is in can be very helpful in gaining access to staff and other treatment team members. This is especially true if you make it clear to the administrators that you will not interfere with the work of the facility.
  • Psychologists and psychiatrists. In situations in which the patient’s mental or psychological functioning is in question, having access to these specialists is extremely important. Not only can they keep you up-to-date about the patient’s condition, but they can also help you make your interactions with the patient more effective.
  • Attorneys. When legal issues are involved, it’s extremely important that you have access to the attorneys on both sides of the issues. It is especially important that the patient’s attorney advise you on what to do and how to do it to protect your patient’s rights and benefits.
  • Insurance representatives. You might find yourself having to deal with private insurance company representatives (the patient might have, for example, accident, health, or short- or long-term disability insurance). You’ll need to learn from the representatives what the benefits are and what you have to do to get them for the patient.
  • Employer’s representatives. If the patient was employed at the time the problem began, you need to know from the employer or the employer’s human resources staff what benefits he or she is entitled to (for example, short- or long-term disability insurance, sick leave, workers’ compensation benefits, or other health insurance benefits). Keep in mind that although employer’s representatives are not adversaries, they are not the patient’s advocate. You are, and it is up to you to open and maintain contact.
  • Other benefits personnel. Depending on the patient’s situation (for example, its intensity, its duration, and the potential for disability), he or she might be eligible for benefits from federal and/or state programs such as Social Security and/or vocational rehabilitation. The patient’s health professionals, as well as his or her attorney, will usually know about these programs and can help you make contact with them. Once you have done so, find out what you have to do and how to do it to get benefits for the patient.
  • Family members. Whether you are a member of the patient’s family or not, make certain all family members are as involved as they can be, or want to be. Although you are the patient advocate, keeping family members informed of the patient’s situation can lessen their general concerns and make most decision-making easier.

Make your concerns and intentions known

Make certain all key persons know your primary concerns related to the patient’s treatment. You are concerned for the patient’s health, welfare, progress, and rights. You are not trying to interfere with the key persons’ work — you want to help them carry it out in a manner consistent with the patient’s wishes.

Similarly, they should know your intentions related to monitoring the patient’s care. Your primary intention is to make sure that the patient is getting the care the health professionals on the treatment team have prescribed and that you are getting the information you need for attorneys, employers, human resources people, and the like. On top of that, make certain all key persons are aware of your willingness to do anything needed to promote the patient’s progress and to make their jobs easier.

Be available

Be as available as possible. Make certain all the key persons know you are available to answer questions or deal with problems that need your input. Give them your detailed contact information. Stay in as close contact with them as possible. Contact them on a regular basis. Don’t wait for them to contact you.

Monitor progress

Make sure to monitor the patient’s progress regularly. Be as consistent as possible in your monitoring. Don’t let days go by without some contact with key people. Give them a “heads-up” so they’ll be ready for your questions, your requests, your concerns, and your suggestions.

Be positive

Act in as positive a manner as possible. Be cooperative, be caring, be knowledgeable, be firm but not demanding, and be active but not antagonistic.

If the above actions fail to accomplish the goals you’ve set for making certain the patient is receiving the prescribed care, making the desired progress, and getting the benefits he or she is eligible for, you’ll probably need to consider alternate approaches. That includes seeking help from family members and from the key professionals with whom you have the best working relationships.

Do I need an advocacy partner?

Patient advocacy can be time-consuming and demanding. You need to figure out just how much you can do and how much time you can commit to the process. The sooner you can do that, the more effective your advocacy will be.

Probably the most important factor to consider is how well the patient prepared for the unforeseen (see “Preparing for the Unforeseen”). The more preparation the patient did, the easier your job will be.

A second factor is the amount of time you can afford to give. When advocacy requires very difficult decisions over long periods of time, patient advocates often become fatigued, both mentally and physically. This can lead to less effective decisions.

Another very important factor is the working relationships you establish with the key persons involved. The closer the relationships, the easier your job will be.

If you find that the requirements of advocacy are more than you can handle, you need to look for an advocacy partner. In the authors’ experience, the most effective advocacy partners are knowledgeable, concerned family members. A second source is very close, concerned, knowledgeable family friends. Key persons such as doctors, nurses, and other professionals can also be effective partners, but they rarely have the time to commit to formally taking on that role. However, they may be able to carry out very specific advocacy actions at your request. Don’t be afraid to ask. Any help you can get will increase your advocacy effectiveness, lessen your time commitment, and increase the chances that the advocacy process will be successful.

David Wayne Smith is Director of the University of Arizona’s Disability Assessment Research Clinic, which is part of the Arizona Arthritis Center. Charles Rastatter is Director of Vocational Assessment at the Clinic. John D. Ellis is a practicing attorney. David B. Hammond is a financial planner. Jeffrey Lisse is Chief of Rheumatology in the Department of Medicine at the University of Arizona.

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