The “go to person” who can guide you through the healthcare maze
Patient advocates act as guardians of patient’s rights :
- With their inside knowledge of how a healthcare system works (or does not work)
- Their access to leading doctors
- Their ability to cut through hospital red-tape and make sense of medical jargon
- Their skill in sifting through medical research and translating this information into simple language
- Their compassionate support; and
- Their capability in talking confidently to doctors without getting bullied or cowed down
Your Friend in Need
A patient advocate is not an adversarial position. It doesn’t mean rushing out and getting a second opinion on every routine matter, or conducting your own research and confronting a healthcare professional with your findings. It merely implies acting as a wise go- between between the healthcare provider and the patient.
Patient advocates are able to provide an invaluable service to a patient at the most crucial time of his life. Depending on who assumes the role of a patient advocate, patient- advocates can be classified as:
Self-advocates: If the patient possesses adequate medical knowledge and if his health permits, he can function as his own advocate.
Informal advocates: When a family member- typically a spouse, sibling, parent or friend - takes on the role of a medical advisor.
Professional advocates: A social worker, nurse or another health professional employed either by the hospital by the family to act on behalf of the patient.
When you (or a family member) get admitted into a hospital, please inquire if the hospital has a patient advocate on board and what services he can provide. If not, you should consider hiring one. Just as a lawyer helps you with all matters legal and brings your case to trial before a magistrate, a patient-advocate can highlight your concerns to a doctor when you are feeling unwell, frightened and may not be able to understand what your doctor is saying, simply because he is busy and rushed for time.
If you are privileged to be selected as a patient’s advocate, understand that you are taking on a big responsibility that may require you to:
Good Communication Helps
“If we can establish more communication among physicians, nurses, and administrators, then I believe the quality of health care will improve by leaps and bounds.”
Make yourself available 24/7 - you must be willing to make the time to do the job right.
Develop patience and understanding - know that there will be unending chores and that you may be called on to run errands for the patient at all odd-hours of day and night. You will need patience and maturity to deal with all kind of anticipated and unanticipated medical exigencies.
Become an expert in the shortest possible span - you may need to sift through pages and pages of medical documents; organise and summarise these ; and try to make sense of medical journal articles written in the densest prose. In addition, you may need to read up on the internet; subscribe to medical databases; consult with medical experts; refer to library resources and discuss issues with doctors, specialists, and other medical staff; and liaise with family members. This can be a challenging exercise, and you need to be systematic and well-organised if you want to be effective in this role.
The Skills of an Advocate
“If you look at it from the business case, patient advocates need to have advanced training in conflict resolution and have a firm understanding of the medical world to help families through critical times. It’s a complex role that requires a special skill set.”
What services do patient advocates offer? They offer a wide variety of services, including providing medical assistance, insurance assistance, home health assistance, elder and geriatric assistance and legal help. In order to discharge these duties they need the ability to:
Dispel myths and provide patients with curated, trustworthy information, so that they understand their diseases and treatment options and don’t get misled by quacks.
Cut the red-tape because they understand the hospital hierarchy. With the assistance of a patient-advocate you can get prompt and efficient care without getting bogged down by bureaucratic hassles.
Build relationships: A patient-advocate not just acts as a friend, philosopher and guide to the patient, he is also able to communicate intelligently with the doctor, who in turn treats him as a trusted, reliable partner he can collaborate with, so the patient gets better sooner. Since a patient-advocate is a vital communication bridge between the two, the doctor must see him as an ally, rather than as a meddlesome adversary. The better the relationship between the two, the easier it is for them to function effectively.
In India, the word advocate is synonymous with a lawyer and therefore often carries a negative connotation. But don’t forget that an advocate is a professional who is trusted to fight and stand up for his client’s rights. As a patient, it’s always useful to have someone who is vigilant by your bedside to make sure that an overworked nurse is giving you the right medicines, at the right time. It’s useful to have a well-informed professional scan the web and find out more about your specific condition. And it’s important to have someone take notes during a doctor’s visit and ask the right questions on your behalf.
Steve Jobs and Patient- Advocacy – or the Lack of it!
The following Saturday afternoon, Jobs allowed his wife to convene a meeting of the doctors. He realised that he was facing the type of problem that he never permitted at Apple. His treatment was fragmented rather than integrated. Each of the myriad maladies was being treated by different specialists – oncologists, pain specialists, nutritionists, hepatologists, and hematologists – but they were not being coordinated in a cohesive approach... “One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,” [Laurene] Powell [Jobs’ wife] said.
Patient Advocacy on the Cusp of the Tipping Point by Trisha Torrey
My friend’s mother’s case offers an instructive example. Admitted to the hospital for a laparoscopic removal of the gall bladder, she was diagnosed with septicemia. A few days later, when she found that the nurse attending to her was ignoring her, she urgently summoned her daughter and asked her to fetch a paper and pen. In a highly agitated state, the patient began scribbling notes, saying she was losing sensation in her right hand. The concerned daughter alerted the doctor on duty and it was discovered that the patient was actually having a brain stroke. Her daughter acted as an advocate, and was able to prevent further brain damage.
A patient-advocate wears multiple hats
A patient-advocate is a crucial component in the healthcare delivery chain. Her presence and involvement can ensure the best possible treatment outcome for the patient. Among some of the tasks that she needs to complete are:
- Network with doctors; take appointments, coordinate diagnostic tests, and collect reports
- Get specialists to talk to each other around the hospital bed
- Arrange for blood products
- Buy medicines
- Fill in various medical forms and complete the insurance paperwork.
The Professional Patient Advocate Institute in the UK (www. patientadvocatetraining.com) offers high-level, in-depth training to those currently practicing as advocates and provides an entry point for those who desire to transition to an emerging practice, or those who want re-enter the field from retirement. The Institute serves independent patient advocates, in-hospital patient advocates, employer groups and others interested in ensuring effective, consumer-driven healthcare. The Institute offers professionals who have an understanding of the healthcare system the opportunity to improve their skill sets so they can truly advocate for the consumer and their families to improve the patient experience and ultimately contain healthcare costs.
The good news is that being an effective patient advocate does not require specialised medical training - just basic communication skills, a problem-solving mindset, the ability to empathise with the patient and the family and the willingness to shoulder some extra responsibility. When you find yourself playing this role for family and friends with chronic conditions, help them look for a physician (usually a specialist) who has a strong track record in treating patients with their condition. If the condition has not yet been diagnosed, help them find an empathetic primary care physician who can provide individualized attention.
One aspect that you must remember about a doctor-patient relationship is a doctor makes a recommendation, but it’s the patient who has to make the final decisions. As an advocate, you can help him make the right decision.
Make your concerns and intentions known
As a patient advocate, your first responsibility is to make sure that all the key people know your concerns related to the patient’s condition and treatment plan. The medical team must
understand that you are concerned about the patient’s health, welfare, progress, and rights. You are NOT trying to interfere with their work - your goal is simply to help them carry out their tasks in a professional, responsible manner, consistent with the patient’s best interests and wishes.
Good doctors appreciate the assistance and insight which a skilled patient-advocate can bring to the table. The nursing staff should understand that it’s the advocate’s job to monitor and oversee a patient’s care, to ensure that the patient is getting the care that the doctor has prescribed. Towards this end, the advocate must share his contact information with key persons and contact them proactively on a regular basis, rather than waiting for them to contact him in the event of an emergency. He must monitor the patient’s progress regularly; remain positive, co-operative, caring and knowledgeable. He must be firm, but not demanding; active, but not antagonistic; concerned, but not confrontational.
In their article, “The Voice of Florence Nightingale on Advocacy,” Louise Selanders and Patrick Crane point out that Nightingale was an excellent patient-advocate. She established nursing as a profession and fought concertedly for the rights of diverse set of patients. She believed in equality of care, regardless of religion or faith, and was a crusader for basic human rights.
If you are a patient
Your advocate can be a spouse, a child, a close friend, a parent or a concerned relative. It is best if your advocate is familiar with your medical condition and your symptoms. Ideally, he should accompany you every time you see your doctor. A doctor is likely to give you more time if you have a representative with you. Interestingly, research shows that if you are a woman, choosing a male advocate will help you wield more clout with the healthcare system.
Quiz Time: Would You Make a Good Patient-Advocate?
Instructions: Please choose your response from the options provided with each question:
1. The role of patient-advocate implies:
a. Speaking up for the patient where needed
b. Making crucial decisions for the patient
c. Excluding the family from the decision-making process
d. Not discussing the patient’s concerns with other healthcare workers
2. The legislation that finally recognised patients as consumers of healthcare services was:
a. Monopolies and Restrictive Trade Practices Act, 1969
b. The Consumer Protection Act, 1986
c. The Insurance Act, 1938 d. None of the Above
3. Patient advocacy can result in which of the following consequences:
a. Frustration with an inefficient and baffling healthcare system
b. Punishment for the guilty doctors and nursing staff
c. Lowering of the dignity of the patient
d. Better quality care for the patient
4. Patient advocacy is meant to improve:
a. Patient safety
b. A nurse’s salary
c. A nurse’s workload
d. Hospital’s income
5. The key skill needed in a patient-advocate is:
a. Effective communication
b. Willingness to take risk
c. Focus on the patient d. All of the above
Let’s check your answers: