DEFINING PATIENT ADVOCACY

Last week’s #hcldr chat featured Dr. Rajiv K Singal (@DrRKSingal) on the topic of Physicians, Philanthropy and Patient Advocacy.

It was a fantastic discussion and tremendously educational. If you missed it, check out either the full transcript of the chat (via our friends at Symplur) or the Storify summary of the chat’s most interesting comments.

This week on #hcldr I’d like to further explore one of the concepts from last week – Patient Advocacy.

The National Patient Safety Foundation (NPSF) defines a patient advocate as:

An advocate is a supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.

In her Forbes article, Kerry Hannon describes some of the duties that a patient advocate is expected to perform:

A patient advocate’s responsibilities can include wrestling with billing mistakes on medical bills and negotiating with insurers who’ve rejected policyholders for coverage. The advocate might also help patients pick doctors, discuss treatment options, assist in finding a specialist or hospital, keep track of prescriptions or accompany patients to doctor appointments to take notes and ask questions.

I am willing to bet that many of you reading this blog have been a patient advocate at one point – either on behalf of a loved one or for yourself. You may even have been an advocate without even realizing it. When you bring something to the attention of the nurse, you are being an advocate. When you help someone understand their medication regimen, you are being an advocate. When you help someone navigate the healthcare system so that they can get the care they need, you are being an advocate. These are short and simple acts of patient advocacy.

Unfortunately, there are many times when being an advocate is a full-time job – a job that arrives without any warning and often involves a loved one. This was the case with Regina Holliday (@ReginaHolliday). When her husband Fred became ill Regina became an advocate out of necessity. She asked questions, self-navigated through various healthcare institutions, sought help from others who had gone through similar situations and fought tooth and nail so that her beloved Fred could have the best care possible. I encourage you to read her full (and incredible) story on her blog, but below is a short reflection on her patient advocacy journey written by Regina herself:

Three years ago, I wrote through tears after the burial of my husband. I wrote about him and all the patients like him. I said simply, ‘I didn’t ask for this cup; I will drink from it, though. I will let the anguish of us all pour through me. I will be his voice. I will be your voice. We are all patients in the end. We should have the right to be treated with dignity and respect… I will stand up. I will not be silent. I will not give up the fight.’

Disclosure, I am a member of #TheWalkingGallery and have been known to geek out with Regina.

Being a patient advocate is a tough job. It’s physically and emotionally draining. It’s frustrating. It takes a lot of time. But when it is a loved one, it’s a burden we don’t hesitate to shoulder. But what does it take to be an effective patient advocate? The NPSF website offers the following:

An effective advocate is someone you trust who is willing to act on your behalf as well as someone who can work well with other members of your healthcare team such as your doctors and nurses.

Personally I believe that patient advocates need a wide range of skills including: communication skills, organization, passion, determination and compassion. The most important skill, however, is empathy – empathy not only for the patient, but for the harried, over-worked and underpaid people providing their care (nurses, physicians, lab techs, porters, etc.). Armed with empathy you can be a tremendously effective advocate because you understand and are “in-tune” with the needs of patient you are helping AND you know how to relay those needs to the people who can best address them in a way that they will be receptive to.

When we think of patient advocates we often picture family or close friends. However, there are many patient advocates that work within the healthcare system. Nurses, physicians, caregivers and even administrators can be patient advocates too. Nurses in particular are often thrust into the role as they help patients in their care to navigate their institutions or to help family absorb the diagnosis/news from the physician. In fact advocacy is so central to nursing that the American Nurses Association (ANA) that it is part of their Social Policy Statement (2010):

Nursing is the protection, promotion, and optimization of health and abilities, prevention of illness and injury, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the care of individuals, families, communities, and populations. (ANA, 2003)

Being a patient advocate that is employed by a healthcare provider isn’t easy. There are often times when they find themselves in situations that pit their obligations the organization against their desire to provide the best care possible to their patients. Consider the following example from the ANA (just substitute nurse with nurse/doctor/administrator):

Ethically speaking, ‘what should be done’ in an individual, patient-care situation is at the heart of many practice dilemmas nurses face on a regular basis. Consider, for example, the nurse who has received a discharge order for a homeless patient hospitalized for pneumonia. The nurse knows the patient needs further care that will not likely be delivered ‘at home.’ The nurse also knows the bottom financial line is that the patient has ‘used up’ the days allotted for the medical condition and discharge is imminent. This example illustrates the dilemma related to the ethical issue of the distribution of scant resources that occurs frequently within health care arenas. The ethical principle of justice guides the fair and equal treatment of all people; yet, the nurse wrestles with the consequences of limited organizational and societal financial resources.

Regina Holliday in her blog sums it up best:

Some advocates who work for organizations have not been able to testify as freely. Some have been told not to speak, some have been told not to tweet and some have been told to remove posts that represent the outrage that patients express when they have been denied access to their data. My heart breaks for advocates like these, who in order to retain employment must bow their heads and shut their mouths within the halls of medicine. These advocates are torn between telling the truth and protecting the reputation of their organization.