Wednesday, October 30, 2013

Patient Advocacy: Mediating With Insurance Companies

In the complex world of modern medicine, where hospitals bills are
often paid by insurance companies, you need someone to negotiate
on your behalf
Two days after surgery to replace both his knee joints, a social worker employed by a hospital informed the patient that the insurance company would not pay for his stay at the hospital any longer. However observing that the patient was barely able to get to the bathroom unaided, the patient-advocate, on her own accord, informed the insurance company that the patient was not ready for discharge and insisted that he be given at least one more day’s stay in the hospital. The request was granted and the patient was grateful for the advocate’s timely intervention. Left to his own devices, he was in no shape to argue his case with the insurance company call center staff, whose primary goal is to save money for the company, and who do not care about a patient’s well-being.
In the complex world of modern medicine, where hospitals bills are often paid by insurance companies patients - especially those who are critically ill, need a patient-advocate -, someone to negotiate on their behalf with the insurance company, to ensure that they are receiving the care that they deserve.
Mahesh Sharma was stabbed in the neck by unknown miscreants and was seriously injured. He was rushed to a nearby trauma center, but the problem was that this centre was not affiliated to the health insurance company from which he had bought a health insurance policy. Cashless care was therefore ruled out. His wife settled the hospital bill and six days later Sharma was discharged from the hospital. Four weeks into his recovery, he received a letter from his insurance company informing him that his claim for reimbursement was denied because the trauma centre was not part of their service network!
He consulted a friend who informed him about a non-government patient-advocacy group that mediates with insurance companies on behalf of consumers like Sharma. Six months later, with the assistance of this advocacy group, who petitioned the IRDA (Insurance Regulatory and Development Authority), Sharma won his the case, and besides the cost of the treatment, he was also awarded damages for delay and needless harassment caused by the insurance company.

When you file a claim, you need to study the fine print in your insurance policy carefully. There
are likely to be terms such as deductible, coinsurance, co-pay, out-of-pocket limit, definitions
of out-of-network and emergency services; and details of the appeals process, that may not
be immediately clear, because they are couched in dense legalese. A patient-advocate can help
you make sense of these !
Literacy on insurance related issues is extremely low in India. You may think you deserve
full reimbursement, whereas your policy may provide only for partial pay out. Sit with your
advocate and understand your entitlement before you file a petition. Remember that besides
resolving disagreements between patients and insurers, the main responsibility of a patientadvocate
is to give more information to citizens about health insurance in an objective,
professional and impartial manner.

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Wednesday, October 23, 2013

Patient Advocacy: Managing Conflict of Interest

Patient advocates need to learn how to resolve conflicts

A patient advocate once was concerned that giving chemotherapy to his client was causing him more harm than good. During the course of the treatment, the patient would often complain that he was in agony, telling his advocate, “I can’t take it any more” and the advocate would faithfully relay his misgivings to the doctor team. The head of the team didn’t see any merit in the advocate’s objections and ruled them out. Over the next few months, the advocate watched the patient suffer in silence, through treatments that the advocate believed he would not have chosen had he been informed in advance about the pain they might cause him. The patient finally died, but only after the chemo had left him with unstoppable and painful bleeding in his bladder, robbing him of a more peaceful and comfortable end.
Patient advocates have to perform a difficult balancing act. Their primary role is to help their patient, but they don’t want to escalate an issue and alienate the hospital staff either. How do they keep both parties happy?
The biggest challenge in medical practice is the growing conflict between doctors and patients – especially over costs. Disagreements can arise over many issues – ranging from continuing aggressive treatment for a critically-ill patient to refusing a patient’s request for antibiotics to treat a viral infection. End-of-life issues are especially highly emotionally charged, requiring active involvement of a patient-advocate. When conflict arises, communication channels break down and it’s left to the patient-advocate to sort things out. A mature advocate understands that at the heart of such conflicts is usually a clash of values, and because these are hardest to resolve when everyone is emotionally labile, his first priority is to defuse the emotions and change the climate of mistrust to one of common ground.
A useful mnemonic which experienced patient advocates use to deal with upset patients is called RAPSAND.
                R = Re-establish rapport (Empathy)
                A = Agreement (Get the patient to say Yes)
                P = Problem (Define this)
                S = Solution
                A = Ask Permission (Is the patient happy with the solution you have offered?)
                N = Next step (Follow up)
                D = Document

The most worrisome conflicts are those which arise over treatment choices. If they are not promptly resolved, they can mar the doctor-patient relationship and have an adverse impact on the patient’s outcome. Resolving such conflict is therefore the first priority of a patient-advocate. If he has been employed by the hospital, he has to make sure that he puts the patient’s interests first, and is not seen to be acting in a manner which suggests that he is an agent appointed by the hospital to protect their interests. The moment a patient feels that an advocate is representing the hospital, he is likely to lose faith in him. Instead what he needs to do is:
                Drive maximum patient participation in care decisions
                Develop mutual trust and respect between the doctor and the patient and his family
                Help improve a patient’s experience of a hospital by explaining the hospital system to them, and emphasizing care, compassion and connections
                Be seen as impartial ombudsman, to whom patients, as well as the hospital staff can provide feedback in confidence
                Provide a mechanism for patients and families to cut through the red tape and avoid delays in emergency care
                Let’s not forget that patient advocacy is a new discipline in India. A patient advocate has been introduced as a new component in the care delivery chain, and can help to provide legitimacy to the patient’s voice when the healthcare system ceases to listen. If an advocate is appointed by a government agency (as in the West), he is expected to establish formal programmes for safeguarding patients’ rights, and assist hospital staff in understanding their duties and the patient’s rights. As a third party, he is expected to balance the interests of both parties and provide medical and non-medical support in both inpatient and outpatient care. They are also a trusted source of information, referrals, and navigation.
                Once an 80-year-old poor, illiterate woman with breast cancer was being treated like a senile senior citizen by a resident doctor in a stuffed-to-the-seams government hospital. A concerned citizen watching this interaction decided to act as her advocate and came to her aid. To his surprise, he discovered that the woman was very perceptive. However, because she was illiterate and new to the city (having just arrived from a village) she felt intimidated by her surroundings; and because of her illness, she was not mentally alert enough to be able to make her own medical or financial decisions.
                The busy surgeon was treating her like an imbecile, but the advocate invested his time in talking with her, listening patiently, and asking her the right questions, so she could understand her treatment options. Later he took upon himself the job of meeting with her physician. The physician’s approach to this patient also changed, once he found someone was taking an active interest in her case and documenting his discussions with the patient. He quickly became more respectful and thoughtful.
                Because patient advocates collaborate closely with hospital staff on patient safety and quality-related issues, they can help hospitals identify opportunities to improve patient satisfaction, and bring about much-needed improvement, especially for poor, uneducated patients. Whether through position or persuasion, patient advocates can make good use of medical data, and offer sensible recommendations so the government hospital can improve its track record.
A doctor once had a serious difference of opinion with the father of a little boy, who had met with a road accident. The father felt that his son would benefit from a particular type of physiotherapy. The doctor didn’t. The father brought him loads of health literature but the doctor was not impressed. They argued over the matter. Finally, they both agreed to get a third – independent – opinion. The doctor called in another doctor-friend to act as a patient-advocate. This second doctor read the patient’s report and medical file. Ultimately he agreed with the father’s point of view and said there was no harm in trying out the therapy for a short span of time and if it didn’t work, they could always change it later on. When they heard him, both men laughed. An ego-conflict was amicably resolved. Later, this second doctor also helped the patient’s father get the therapy reimbursed by his insurance company. To this day, the patient remains grateful to the advocate and speaks very highly of the first doctor, who put him in touch with this advocate. For every health problem – big or small, he always goes back to the same hospital.

The moral of this story is - whatever you do; don’t let a patient walk out of your facility disillusioned, angry or dissatisfied. When you can’t reach an agreement, get an advocate on board. He will resolve the issue in the most humane way.

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Monday, October 21, 2013

Patient Advocacy: Dealing With Angry Family Members

Patient-advocates can help hospitals deal with angry family members
When people are anxious or angry, they may not be able to make sense of what a doctor is saying. When tempers run high, they find it difficult to express their most pressing concerns. Strong emotions can make processing new or complex medical information more difficult. What can be done in such a scenario?
Get a patient-advocate on board. Hospitals are stress-inducing places for all the right and wrong reasons. Patients and family members may experience a sense of loss of control in such an unfamiliar environment. They often do not understand a lot of what is going on and may feel vulnerable, helpless and stripped of all their rights and options. However this is a wrong perception. Even in hospitals, patients have rights, as well as, responsibilities. It’s the advocate’s responsibility to make them understand both.
Intense anger or anxiety can get in the way of good treatment and care. Once an 80-year-old patient was scheduled to undergo surgery for prostate cancer. He and his wife arrived on time for their early morning surgery. The nurse at the reception told them that the surgery was delayed until the afternoon. By mid-afternoon, they were told that — due to several unexpected emergencies — the surgery had to be postponed to the next day.
Already anxious about the upcoming surgery, the patient and his wife got so angry, they were ready to walk out of the hospital in a huff, but were calmed down by a patient-advocate. Yet the patient couldn’t sleep two winks that night, kept tossing and turning on his bed and his wife, who was even angrier, seemed to complain about everything in the room, including the AC, the water tap, and the cleaner. The next day, when the patient-advocate turned up for his visit with the couple, the wife pounced on him with the words, “Please tell us how to get out of this hospital?”
Maintaining his cool, the advocate smiled, patted the woman’s hand gently and said, “Why don’t you tell me what can I do to help you get through this tough day?”
That immediately calmed down the two and the wife began to slowly confess her fears and frustrations to the advocate. The advocate also took his time, explaining why surgeries have to be postponed when more serious cases arrive, and requesting them to be a little more understanding and patient with the hospital staff.
The fact is that while hospitals are familiar places for doctors and nurses, for patients and their families they can be extremely scary. Even routine events and procedures can produce anxiety in such patients. An eye check up can feel as traumatic as open-heart surgery. Knowing what people feel and helping them relax with comforting words can make a doctor’s job simpler, and this is what an advocate is trained to do.
A doctor once called up a patient-advocate saying, “This patient doesn’t understand anything. She refuses to go home. Can you please go and drill some sense into her thick head?”
The patient-advocate went and spoke to the distraught woman. Later he came back and asked the doctor, “Did you ask the patient why she didn’t want to go home?”
“No,” replied the confused doctor.
“Because she’s homeless and has nowhere to go…”
Unprovoked, nameless anger can be an expression of helplessness. It’s the patient-advocate’s job to see through the façade and dig out the real source and meaning of that anger and help resolve the issue quickly and efficiently.
When a Family is Angry
  • Ø  Don’t argue, even if you know their complaint is unjustified
  • Ø  Listen to what family members have to say — they might calm down if you listen to them and share their concerns
  • Ø  Do not insist on a meaningful conversation when families are emotionally upset and are not ready for this
  • Ø  Healthcare is a joint effort between patients, families, and health professionals. Be clear and specific about what each person can do to help
  • Ø  Encourage family members to participate in the loved one’s treatment.

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Saturday, October 19, 2013

Patient Advocacy: Helping the Patient File a Complaint

Helping the Patient File a Complaint- Using the Law to Strengthen the Patient’s Voice

When you want to make a complaint but don’t know where to start,go to a patient advocate
On January 17, the Supreme Court of India directed a Hyderabad-based super-specialty hospital to pay Rs 2.05 lakh as compensation to the widow of a patient who had died of a heart attack, while being treated at the hospital for a shoulder injury. The National Consumer Disputes Redressal Commission (NCDRC) said the inability of the hospital to explain what caused the patient’s death left many questions unanswered.
Not every medical error is preventable. And despite taking every available precaution, you may still be exposed to a medical error. In the event you are harmed by a medical error, you may be concerned for your health, frightened of the possible consequences, angry at the doctor’s mistake or his callous disregard of the consequences. You may be seething with anger and battling with a sea of uncontrollable emotions. You may be feeling utterly helpless and vulnerable, and may not know what to do next or how to report the incident, or even, who to report it to?
Fret not. Go to a patient-advocate. Since this is not a formally recognized role in India yet, look for a person who is seasoned and mature to act as your advocate before you seek a meeting to sort out issues with the hospital administration.
What is a “medical accident”?
If something goes wrong during medical treatment, this is called a ‘medical accident’ or ‘adverse event’. In some cases, complications are unavoidable risks of a treatment. For example, if an elderly patient chooses to undergo a heart bypass surgery, he and his family should understand that this is a risky procedure, and complications can occur, no matter how careful or competent the doctor is.
‘Clinical negligence’ is the legal term used to describe a medical accident where a patient has been harmed, not because of a complication that could not have been avoided, but because a doctor did not deliver the proper standard of care. It doesn’t always mean that the doctor handling the procedure was incompetent – it just means that he made a mistake that he shouldn’t have.
Clinical negligence may include:
                Making a mistake during surgery
                Carrying out a procedure without the patient’s consent
                Administering the wrong drug to the patient
                Making a wrong diagnosis

Clinical negligence can also include not doing things that should be done, such as:
                Not giving timely treatment
                Not warning the patient or the family about the risks of a particular treatment
When you have a complaint…
Inform the doctor that you would like answers to questions about your care. Be firm but also be polite. Next, have a strategy in hand. Think through all your questions and write them all down. Run these past your patient-advocate. Inform the hospital in advance that a friend will accompany you to this meeting in order to help you understand the medical issues.
Know how much time you have been allotted for the meeting and ask your questions in order – the most important ones first. If your doctor won’t speak to you (which is common) seek an appointment with the hospital’s complaints redressal department (if they have one), or the human resource department. If they ask you to file a written complaint, be careful how you draft this. You may later, depending upon the outcome of your meeting, intend to file a suit against the hospital, in which case, you need to be extra careful about what you commit to paper, because this can be used as evidence.
Don’t be provoked into saying anything that you may regret later. Don’t convey a sense of having been wronged. Read and re-read your questions a few times to make sure that your charges are well-substantiated and that they don’t come across as wild, baseless accusations.
If you are not successful in resolving the issue, you have three choices in the matter:
                You can file a complaint against the doctor with the State Medical Council
                You can file a complaint with the State Consumer Court
                You can file a criminal lawsuit against the erring doctor and hospital in a court.
This last, your patient-advocate might warn you, could turn out to be the costliest route in terms of money and time spent. Consumer court is best if your main purpose is to seek monetary compensation. These cases also get settled faster, typically within a couple of years, but the hospital may appeal at the level of the national commission, which means it may get stuck for another couple of years. In contrast, a civil or criminal suit can take more than a decade or two to settle. Go through the Medical Council of India website (www.mciindia. org/) carefully to know the procedure of filing your complaint there. They will investigate the matter and in rare cases, can penalise the doctor by ordering a suspension or cancellation of his medical license.
Remember that….
Doctors aren’t perfect, and they too make mistakes. As buyers of a medical service, patients have every right to raise their voice against medical negligence. You can’t be expected to accept deficient care or poor treatment. Making a formal complaint won’t just benefit you as a consumer, but it may also benefit the community at large, and perhaps act as a deterrent in preventing the doctor or hospital from making similar mistakes in the future again. Most cases of medical malpractice involve negligence or acts of omission by doctors who fail to meet the standards of treatment that their patients both need and deserve.
A patient-advocate, trained in legal matters should be able to help you:
                Establish that a medical duty was owed to you
                That the duty owed to you was breached in some way.
                That this breach caused some sort of injury or death, and finally,
                That the hospital now owes you compensation for the damages causes. These damages can be physical or emotional,
Listening is a key skill of an advocate. Even patients know that advocates are not experts in medicine or surgery. But when someone listens to them with empathy, letting them vent, they can heave a sigh of relief. They are reassured that there is someone on their side, who will help them sort out their problem.

How to Speak Up at the Hospital

  • Ø  State your concerns, needs, and expectations clearly.
  • Ø  Rest assured that complaining will not compromise your care. Hospitals want to resolve your problem as quickly as possible. You should be clear about your own expectations. What do you want? What do you expect the hospital to do? This allows the hospital to know how they can help.
  • Ø  If you do not receive a timely response, or want to address a problem after you’ve left the hospital, contact the hospital’s customer service
  • Ø  You can use the staff of the patient and family relations department as patient advocates to discuss your case and how best to proceed.
  • Ø  It is usually best to resolve problems through face-to-face conversations. These can result in better and faster understanding.

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Thursday, October 17, 2013

Patient Advocacy: How Patient Advocates Can Promote Medical Tourism

An independent patient-advocate can guide an overseas guest to the right destination
In 2010, over five million patients travelled to other parts of the globe in search of better health care. The growth of medical tourism is driven by two factors:
                Steep rise in the medical costs in developed countries and
                Improved health care infrastructure and better healthcare standards in developing nations.

A favourable currency exchange is a major driver for medical tourists. Each dollar spent in Indian fetches more value for a healthcare consumer than is possible in the US. In terms of infrastructure, many hospitals in Asia are now equipped with state-of-the-art medical equipment. Their doctors and surgeons have received their training in the best medical universities across the world. India is also home to some of the most fascinating holiday options in the world. Since resting and relaxing are important ways of recuperating after a surgery, what can be better than clubbing medical tourism with luxury travel and patient advocacy?
Recognising the huge business opportunity in this field, governments, large hospitals and doctors are flooding the medical tourism market with attractively packaged deals and services, making the final choice of a hospital extremely difficult for a patient. This is where an independent patient advocate can be of service to an overseas patient. He can impartially advise the patient on what hospital to choose for a particular procedure, so that they do not get swayed by their misleading marketing hype. He can educate the traveller on what costs to expect; who the specialists in each field are; help them get appointments expeditiously and guide them on where to stay and how to follow-up after the procedure is completed.

Indian culture has always laid get stress on treating visitors as respected guests. Medical tourists require a lot of hand holding, and patient advocates are well-equipped to meet their needs.

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Tuesday, October 15, 2013

Patient Advocacy: Engaging Patients to ImproveTreatment Outcomes

Engaging Patients to ImproveTreatment Outcomes
Dr Dhivya Ramasamy
Positive health outcomes depend not just on the clinical but also on the non-clinical aspects of a patient’s treatment plan
Over the years, thanks to rapid advances made in understanding the causes of various diseases and developing newer methods of managing them, healthcare providers have been successful in bringing about wide scale improvement in patient care. Today, we have effective clinical solutions in place to treat most diseases. However, even those diseases that can be treated through well-established, standard treatment protocols, such as cataracts or refractive error, remain poorly addressed –cataract continues to be the number one cause of blindness in the world, mainly because of non-clinical, patient-related factors that impact positive clinical outcomes (Source: Donatella Pascolini, Silvio Paolo Mariotti; Global estimates of visual impairment: 2010; Br J Ophthalmol 2012; 96:614-618).
Aravind Eye Hospitals in Tamil Nadu has been grappling with this challenge for years and has striven to address this issue through active patient engagement. This article explores the potential of engaging patients in their treatment to achieve better treatment outcomes.
When can the treatment protocol be deemed to be effective?
How do we measure the effectiveness of a treatment plan? That’s a tricky question. At any healthcare establishment, the metric used is the number of patients seen or the number of surgeries performed. Let’s examine how this metric would apply to an eye care facility.
Given our progressive national eye care programme and the wide spread use of community-based outreach camps, a significant number of patients get examined and identified for cataract surgery, every year. However only a fraction of those advised surgery, actually undergo it. The acceptance of cataract surgery is reported to be around only 14% in the community and 45% in hospital-based settings. Knowing that surgery is the only solution for treating cataract, how do we ensure that those with cataract seek care and undergo the surgery?
Similarly, children with uncorrected refractive error have a significant disadvantage and tend to do poorly in studies and sports. This can adversely affect the future career prospects of the child. While spectacles provide a simple and cost-effective solution, it has been reported that compliance with spectacle wear among school children remains as low as 30%.How do we ensure that the needs of children with refractive error are effectively addressed?
As a third example, patients with glaucoma (a chronic ocular condition) are required to be on continuous medication and must come for essential annual review visits. Patients with poor adherence show progressive worsening of the disease. Yet, adherence to medication is poor. Also, the adherence to the essential follow visits drops to less than a third by the fourth year. How do we enable glaucoma patients to have their disease effectively controlled?
The inference from these examples is that for any treatment to be truly effective, it’s important that each and every patient successfully completes his treatment journey:

Figure 1: The Patient Journey
While we advocate this treatment pathway to all our patients, in reality we see patients drop off at different points along their journey, eventually rendering the treatment ineffective.
Over the years, we have experimented with the following strategies to reduce this drop-off rate:
Patient engagement
Given that much of the treatment depends on the behaviour of the patient, our strategy has been to nudge him in the right direction. Actively engaging patients in their treatment plan can help in positively influencing their role in seeking care; adhering to the treatment advised; following instructions for self-care ; and returning for review visits.
Helping patients seek timely care
Awareness creation through well-designed health education programmes targeted at the appropriate audience can help patients identify symptoms and seek timely care. Squint or strabismus is considered to bring good luck, hence parents in India often do not attempt to
correct these conditions. It is important to break such misconceptions. Parents should be made aware that strabismus can lead to severe visual impairment, so they must act fast.
Low birth weight children are at risk for Retinopathy of Prematurity, leading to degeneration of the retina. This can be controlled if managed within three weeks of birth. Thus it’s essential to make pregnant mothers aware of this condition so they can seek timely care for their premature babies.
Partnering with opinion leaders in the community
For conditions that are widespread in the population (such as cataract and diabetes), it’s important to rope in youth volunteer groups, NGOs, Rotary Clubs, etc to assist in information dissemination.
Helping patients make the right decision
At Aravind, counselors are an integral part of our clinical team. They ensure that patients have the opportunity to voice their concerns and clarify their doubts. Today, the cataract surgery acceptance rate is about 75% in our hospital, and about 85% in the outreach camps, thanks to the presence of these counselors.
Aravind’s counselors are recruited when they pass out from high school and are intensively trained for two years in : the basics of how the eye works; its diseases; treatment options; and counseling techniques. Regular monitoring and performance feedback help them perfect their counseling skills on an ongoing basis.
Patient Motivators
We’ve discovered that where patients face emotional and psychological barriers to following medical advice, peer counseling is very effective. In the early 1990s when cataract surgical acceptance was poor, Aravind found the use of aphakic motivators was the most effective means to convince patients to undergo cataract surgery. These were patients who had undergone the surgery themselves and were able to share their experience with those being counseled.
All said and done, patients have different information needs. Their concerns and questions are unique to the stage they find themselves in (Figure 2). Patient engagement strategies must be customized to address these specific needs and the individual’s treatment goals.

Figure 2: Information Needs of the Patient
(Source: The Informed Patient: Study Report, March 2003; D.E. Detmer, et al; Judge Institute of Management, UK)
In the final analysis, the hospital must take full ownership of patient disengagement and find innovative ways of engaging patients to help them reclaim control over their lost health.
they will direct you to another clinician who can. Nurses typically work on 12-hour shifts (i.e. from 6 a.m. to 6 p.m.) so find out when the shift change is and try to wait until the nurse on duty has the information she needs to answer your questions.

                Get to know the hospital’s discharge planner or case manager. It is their job to help with discharging your loved one and ensuring that you have all the information you need before leaving the hospital. She can provide you information about local resources, referrals to other medical professionals, when to follow up, etc. 

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

Sunday, October 13, 2013

Patient Advocacy: Meeting the Special Needs of Patients

Not all patients will have similar needs. As a patient advocate, your responsibility is to tailor your services to the specific needs of your patients
A frail 81-year-old woman was counting her last few breaths. Her physician met with the family and they all agreed that comfort care was the best option for this patient. They quickly shifted her to a quiet corner of the intensive care unit (ICU) where she would not be disturbed by the regular flow of incoming and outgoing patients.
The entire family of five sons, three daughters, their husbands, wives, and several of her grandchildren had gathered at the hospital, waiting to meet her during her final moments. Although they took turns, there were still too many of them, and they were crowding the small waiting room. The nurse-advocate assigned to them by the hospital, took stock of the situation and decided to take the doctor’s permission to move the dying woman to a different, less-crowded floor of the hospital.
She personally supervised all the preparations and professionally explained to the family that this was in the best interest of the patient. They agreed and she was shifted uneventfully. The doctor visited them a couple of times in the night and saw them huddled around the matriarch, holding hands and praying for her peaceful passage. The dignity with which they let her go moved everyone who watched them to tears.
In doing all this and more, the hospital had made no big sacrifices. However by providing them with a little privacy and quiet, the nurse-advocate had given them the strength to deal with this difficult hour. After the woman passed away peacefully in her sleep early the next morning, the nurse-advocate told them to take all the time they needed to mourn her.
When they left, one member of the family quietly hugged the nurse-advocate and said “I am also a nurse at a private hospital. But today, I learnt an important lesson in patient care from you. Thank you for being our advocate.”
At times such as these, being an advocate can make a world of a difference to a patient and her family. The advocate can bend the hospital’s rigid rules, to allow an often heartless bureaucracy to put the patient first. When a loved one falls ill, finding the right doctor and getting the right care is all that matters to a patient’s family. Sick patients and family members are vulnerable and can easily get lost in the labyrinth of today’s complex medical system. Effective case management and intervention by patient-advocates can allow the hospital and doctors to tailor care to meet the family’s needs, by establishing better communication channels among the patient, her family and health care providers.
“Did you get a second opinion?” is the question people often ask a patient’s family. Arranging for a second, and if necessary, third opinion is another area where a patient-advocate can make her contribution count. Because time is of the essence when the condition is serious, patient advocates can be useful in providing joint consultations and securing speedy appointments; whereas in the case of chronic illness, patient-advocates can maximize your sense of wellness. They can monitor your progress on a regular basis, check in routinely with your doctor and ensure that the appropriate medical protocols are being followed.
Typically, a patient advocate will meet with the doctor to discuss and outline a patient’s treatment programme. She will then work with the patient and her family to make them understand the implications of the disease; explains the various treatment options; and last but not the least, identify any gaps in care and help plug those loopholes by meeting with the healthcare service providers on behalf of the patient. This can require a lot of coordination, because the healthcare world is often fragmented, and one specialist often has no clue what the other is doing. Here are a few other categories of special needs patients for advocacy efforts:
Patient-Advocates for young children
A father was playing ball with his two young children. One of the children got hurt in the head with the hard ball. She appeared to be fine, but on the third day after that incident, she started complaining of severe headaches. The alarmed parents took her to the emergency room of a local hospital, where the resident doctor even after knowing the child’s head trauma, diagnosed it as a viral infection and proceeded to send her home to rest. The parents did not feel comfortable with this advice. Their gut instinct told them that something was seriously wrong. When they politely suggested a CT scan for the child, the doctor felt insulted. Refusing to be cowed down, the parents dug their heels in and the doctor had no choice but to order the test that confirmed the parent’s worst fears - the scan showed bleeding into the brain, most likely caused by the head injury. Had the parents taken their child home to “ sleep off the virus “ that night, their child probably would never have woken up. It’s your child. Go with your parental gut instinct. Your child doesn’t have a voice, and you need to stand up and be her advocate.
Patient advocacy for the mentally-ill
Sunita Nair (45) got admitted into the inpatient/acute care psychiatric unit after a foiled suicide attempt. She was kept under observation for two days and looked clinically depressed. She had poor appetite and no interest in social interaction. In addition, she expressed ambivalence about acting on her suicidal thoughts, at times denying and at times endorsing those feelings. On the third day the patient denied suicidal ideation. The physician decided to discharge her, because she was no longer actively suicidal. However, her patient-advocate, who spent much more time with Sunita and had a much better rapport with her than the doctor, thought differently. She believed that the patient needed more time in the inpatient unit and the doctor was wise enough to listen to her reasoning. This intervention may have saved Sunita’s life.
Patient advocates and organ transplantation
Patient advocate work closely with hospitals, organ and tissue banks to identify organ donors and ensure suitable matches for terminally-ill patients in need of transplants. The decision to donate an organ or undergo a transplant is not a decision families make lightly. Patient advocates provide reassurance, resources and advice to patients at that difficult hour.
QUIZ TIME: Advocacy in Special Circumstances
Advocates can shine when your patient has a need and you speak up for them and help them get their needs addressed.
                Your patient has just had surgery. The doctor has prescribed pain-killers, but they are not taking effect and the patient is still in a lot of pain. The order says she can’t have another dose for three more hours. What do you do?
  •                 Your patient is a vegetarian but receives meat on her dinner tray. What do you do?
  •                 Your patient is a Muslim and must offer namaz at least five times every day. He has even carried a prayer mat to the hospital with him. What help can you offer this patient?
  •                 A young mother suffers haemorrhage after giving birth to a child. She is in the ICU and requests that she be allowed to see her baby at least once, in case she dies. The hospital has a policy – they do not allow infants into the ICU. To complicate matters, the mother is so ill she can’t be taken to the nursery. What would you do?
  •                 A patient is about to be discharged with a long list of prescriptions. She confides in you that she is a single, jobless woman and cannot afford some of those costly medications to get better. What would you do?

Please note that these questions don’t have any right or wrong answers. But mulling on these tricky situations and thinking of the appropriate response might help you figure out your roles and responsibilities as a patient-advocate ;  Introduce yourself to the nursing staff. They will be providing the bulk of the hands-on care to your loved one. They should be able to answer most of your questions on medication, treatments or procedures. If they can’t, they will direct you to another clinician who can. Nurses typically work on 12-hour shifts (i.e. from 6 a.m. to 6 p.m.) so find out when the shift change is and try to wait until the nurse on duty has the information she needs to answer your questions.

   Get to know the hospital’s discharge planner or case manager. It is their job to help with discharging your loved one and ensuring that you have all the information you need before leaving the hospital. She can provide you information about local resources, referrals to other medical professionals, when to follow up, etc. 

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.