Private Patient Advocates

As our healthcare system becomes more complex and hard to navigate, a new profession has emerged: patient advocacy.

Patient advocates are people who work to help patients navigate the healthcare system, and can in principle help save money, and help make sure one gets the best possible treatment when ill.

While there are some patient advocates who are employed by hospitals, there is a group of individuals, called private patient advocates, who can be retained by individuals (in return for a fee) to work on their behalf.

In this article, we asked one of this new breed, Patricia Knight, to help our readers understand better: what is a patient advocate, what do they do, and do you need one?

—-Editor.

What is a patient advocate?

This is a perfectly understandable question given that the field of patient advocacy only gained recognition within the last 10-12 years. The question is also difficult to address, because a clear, a one size fits all definition doesn’t exist. At its core, however, patient advocacy involves working on behalf of individuals and/or their families who are engaged with the healthcare system.

The simplest analogy is that the patient advocate acts as a tour guide to the medical world. They generally have a background in healthcare or insurance, which makes them familiar with the settings, the language, the culture and the key players. There is also an awareness of the benefits, concerns and risks associated with this world — one generally populated with well intentioned, highly trained professionals, who mean well. Who are also sometimes tired, overworked, stretched too thin or burnt out, leading to less than sensitive care or abrupt behavior or giving short shrift to patient and family concerns.

What services do patient advocates provide?

This varies with the individual advocate. Some combine advocacy services with patient care. What this actually entails varies with each client. However, the goal is the same — providing the client and their family with whatever they need to feel secure and properly cared for while engaged with the healthcare system.

Other advocates focus on finding specialists, arranging second opinions, researching a diagnosis or the top medical centers for a specific condition. There are also advocates focusing on health insurance, managing claims and handling disputes with insurance companies.

Most advocates assist their clients to obtain the best care for their situation. For example, a client is frightened by the need for surgery. Advocacy might include researching the surgeons recommended for the procedure, sharing the results with the client and discussing the pros and cons of each surgeon.

Support might also include attending physician visits, preparing questions, taking notes, summarizing the meeting for later review.

Then being with client in pre-op, ensuring their concerns are addressed, receiving the doctor’s post-op report, seeing them to their room from recovery and making certain post-op orders are in place, pain is managed and they are properly monitored. Advocacy would include keeping family apprised of their condition, assisting with discharge planning and possible post hospital stays.

Families of clients, who are out of town or otherwise not available, simply want to be certain someone is there monitoring the medical care, intervening when necessary and reporting to them about their loved one.

Other clients need advocacy because of inadequate or unsafe patient care. This can occur when the client has multiple physicians, leading to a lack of coordination or a breakdown in communication. Advocates often mediate tensions that arise between healthcare professionals and family members, who are not at their best because of the stress of the situation.

The advocate is often “the squeaky wheel” working with the staff to improve the situation or the facilitator tracking key reports, making sure every one is on the same page, monitoring prescriptions, managing appointments, taking notes and keeping the family informed.

End of life planning and decisions are also areas addressed by the advocate. The forms for making one’s wishes known regarding end of life care are straight forward. However, deciding what is best for one’s self and family is not easy. Deciding to pursue aggressive treatment, palliative care or hospice care is a complex decision.

The advocate can guide this process with questions to the client and healthcare providers, listening and summarizing options in understandable terms. Advocates may intervene to provide for the dignity of the patient and the needs of the family faced with the decision to terminate life support.

Why engage a private patient advocate?

For peace of mind!

Having a patient advocate enables the client to concentrate on their health, knowing a professional is watching out for them. The advocate works with the staff to accomplish the goals of patient care. And, when necessary can be assertive, pushing issues up the chain of command to get resolution. Taking on this role, allows the family to concentrate on the patient and avoid being at odds with the staff.

While healthcare providers may provide advocates, who may be helpful, they are employees of the provider or the insurer. Private patient advocates are just that, they are individuals or groups who work on behalf of the patient. This is an important point, it means the advocate acts only on behalf of the patient and is independent, not beholden to the healthcare providers or an insurance company.

The advocate can support the patient, whose wishes are not shared by family members, often mediating the issues. This often occurs for clients confronting treatment choices for an incurable or chronic condition or end of life decisions, whose families cannot accept the client’s wishes.

Because medical care is complex and often complicated!

Even when the interaction is not life threatening, most people experience anxiety when encountering healthcare providers. Anxiety impedes the ability to think, to hear, to form questions, to recall information. Having an advocate frees the patient from these worries, because the advocate will prepare questions, take notes, raise issues or concerns, be available to talk through the encounter and offer explanations.

This does not mean that the advocate takes over or that the patient relinquishes their autonomy, it simply means the patient can breathe a little easier knowing they are with someone who knows how the system works.

The presence of an advocate usually has a positive impact on the staff. The staff seems to step up a little more, knowing that a professional is monitoring the care. They also appreciate speaking to someone who speaks their language and understands how the system works.

When there are problems, the advocate can address them free of the emotional charge that a family member might bring to the situation, as a professional, who can’t be intimidated.

A private patient advocate is a gift to oneself!

Returning to the tour guide analogy. Imagine as a westerner traveling to Asia — different language, alphabet, culture, culinary habits, etc. You could manage on your own, but would probably get lost, might behave in a culturally offensive manner, dislike the food and come away having had a limited exposure to the culture and history.

If on the other hand, you had an experienced, ethical tour guide, who spoke the language and introduced you to the known and not so well known sites, encouraged you to extend yourself, prepared you for the cultural differences or nuances, you would return safe and sound with an in depth knowledge of the area.

Just as some people are able to travel very well on their own, so too some folks are quite capable of advocating on their own behalf. However, almost everyone feels better not having to go it alone. Retaining a patient advocate is a gift to oneself. A gift that allows the one to concentrate on their health and their recovery.

How do you locate a patient advocate?

The best way is by referral from someone you trust, who knows the advocate. An internet search for private patient advocates or patient advocacy in your area should give you some options.

The Alliance of Professional Health Advocates (4) has a nationwide directory of members. Trisha Torrey is the founder and has been involved with patient empowerment from the beginning and is an expert in this area.

Academic programs for patient advocacy might be a resource for advocates in a specific area.

How do you choose an advocate?

Most advocates will provide a complimentary interview by telephone or appointment. During the interview, you want to gather the following information:

• Do they have a website, where you can learn about them?
• What is their background, credentials and how long have they been an advocate?
• Have they had experience with your condition or situation?
• What is their fee and how are fees calculated? Ideally the advocate uses a written agreement outlining all of details of their engagement. Is the advocate affiliated with another group or entity which pays referral fees?
• Are they licensed, if they are in field that requires a license? Do they carry E&O insurance, if not, why?
• What is their availability and do they have backup if they are away?
• Can they provide you with references?

It is essential that you feel comfortable with your advocate knowing they will guard your privacy and not disclose confidential information without your permission, will work with your healthcare providers to your benefit and give a sense of comfort and confidence.

The relationship between the advocate and the client is rich and very rewarding one, built on trust.

References: Learn More

(1) Patient Advocacy on Wikipedia

(2) Patient Advocate Foundation

(3) National Patient Safety Foundation

(4) Alliance of Professional Health Advocates

(5) Private patient advocates a growing, yet costly, trend in health care (Chicago tribune, 2015)