Patient Advocacy: How I Became a Patient Advocate

How I Became a Patient Advocate

Prabhakar Rao

A father recalls the tragedy of the untimely death of his son - and how this gave birth to JASCAP

AS far back as I can remember, I’ve always volunteered to play an advocate to someone or the other. Over the years, I’ve helped a fairly large number of young people launch or advance their careers and this was done by being their advocate and mentoring them.

But, first things first. Let me introduce myself first. I am a textile technologist from Bombay University and have spent over forty years in business and industry in India and abroad. I started, like everyone else does, I suppose, at the bottom of the pyramid and rose rather rapidly to senior and then chief executive positions.

Many a times, youngsters who had worked with me or came in contact with me requested help in getting placements or promotions and I enjoyed playing the role of their advocate and helping them succeed. In May 1996, my only son, 30-year-old Satyajit, died of cancer in the United States where he was working as a software engineer. I was 60 then and this tragic event shattered our life and turned it topsy-turvy. I was then the chief executive of a textile company in Mumbai.

While in the US and performing the last rites of my son, I came across a fairly large number of brochures, pamphlets and booklets on cancer in general and on lymphoma; the cancer that took him from us. He must have sought that literature from various cancer support organizations to help him cope with his cancer and its subsequent treatment. Browsing through that literature during that trip to the US, a germ of an idea took root in my mind. Upon our return to India, I gave up my job and my wife Neera and I decided to transcend our grief into a socially useful project to help cancer survivors in some meaningful way. We set up a charitable trust to help cancer patients in Mumbai. That marked the birth of “Jeet Association for Support to Cancer Patients” (JASCAP), a voluntary organization dedicated to cancer patients, their families and friends.

Briefly, our objectives at JASCAP are:

                To comfort and counsel cancer patients and their families and instill in them the confidence, courage and determination to fight this life-threatening disease, thus rendering their medical treatment more effective

                To inform and educate cancer patients and their families about the various treatment options; and their respective physical and emotional side effects and how to cope with these

                To help patients and their families do everything possible to cooperate fully with the medical care team and thus assist themselves towards a possible cure or to live life as comfortably as possible with this disease

                To prepare and disseminate printed and audio-visual material dealing with cancer and its after effects to better prepare cancer patients and their families to face this disease and remove or alleviate fears, especially those based on misconceptions and incomplete understanding of the medical issues confronting them

To achieve some of these objectives, we have taken the following initiatives:

                Obtain and disseminate up-to-date and accurate information about cancer, its causes and methods of treatment, medical as well as non-medical

                To prepare, print, publish and circulate pamphlets, booklets, slides, posters and other educational material, in English, Marathi, Hindi and other Indian languages, in order to provide patients and their families with accurate, scientific, medical and clinical information and knowledge about cancer; the different methods of treatment, control and post-treatment care plans for the patients

                To provide guidance, help, counseling, support and comfort to patients in various forms in order to pave the way for their rehabilitation into the community

                To enlist support of medical professionals, pharmaceutical manufacturers, social workers, voluntary organizations, government institutions, dispensaries, hospitals, medical centers; in India and abroad in fulfilling these objectives of JASCAP

                To collect funds by way of membership fees/donations as also gifts, books, equipment and audio-visual communication/education aids for patients and those around them, as well medicines for patients in need of these supplies

                To recruit social workers, nurses and volunteers from the medical profession, who are interested in lending their support to JASCAP and strengthen our activities with lectures, seminars and study classes.

65 11. How I Became a Patient Advocate

                To build strong linkages and partnerships with institutions and other voluntary/ governmental organizations, hospitals, in India and abroad that are working for similar causes in order to further the objectives of JASCAP

                To carry out public health activities such as supporting anti-tobacco campaigns, in order to make our society cancer-free

Pledging and pooling in my limited financial resources, we founded JASCAP. Friends and well-wishers scoffed at the idea first, but seventeen years down the line, the response from cancer-affected patients, the medical fraternity and the voluntary sector has been overwhelming, and this has reinstated our faith in JASCAP and the objectives that we set out to achieve.

Our first big break came in 2001, when the Tata Memorial Hospital at Parel, Mumbai offered to house us in the hospital premises and despite the space crunch they faced, allowed us to set-up a small book counter where we could distribute literature on cancer.

Initially, all this literature was only available in English, but gradually over the years, we have managed to have a bulk of it translated in regional languages, namely Hindi, Marathi, Gujarati, Bengali, Kannada, Tamil and Malayalam. This, we felt was important, as most patients at Tata Memorial land up from different parts of the country. Since we could not afford the fees of professional translators, we sought help from volunteers in crossing this major linguistic barrier.

The cost of printing was another big challenge confronting us, besides editing the raw material, type-setting and proof-reading – but with God’s grace, help kept pouring in from unexpected quarters and we managed to remain afloat. By fighting to keep our costs low, we have been able to offer our booklets at extremely nominal prices to needy patients and their families.

Since we cannot order a huge print run – because our booklets have to be routinely updated to keep pace with the new medical breakthroughs – we often struggle to keep a tight leash on our costs, without sacrificing the value we bring to our readers. We take inspiration from the millions of other Indians who are excellent in getting the biggest bang for their buck!

Small wonder that until 2012, JASCAP has distributed over 200,000 booklets. We also offer video CDs and in 2011 we crossed another milestone in launching our website www.jascap.org, from where our booklets can be downloaded free-of-cost in different languages.

At times, we also arrange financial assistance to poor cancer patients by putting them in touch with various funding organizations that are doing a yeoman’s job in this area. As a small unit, we are nimble and try and respond to patients’ needs promptly. We also do one-on-one counseling with cancer patients and their families.

We have trained counselors amongst our staff and volunteers for this role. To be honest, the role is more of a LISTENER than a COUNSELLOR, but we have figured out that listening with empathy is what patients and their families require the most during this difficult hour. In rare circumstances, we also arrange peer and expert counseling for patients and their caregivers. The literature that we distribute covers information-gaps in the following areas of interest:

                Sources of financial assistance for needy cancer patients

                Accommodation options available in Mumbai for patients coming from different parts of the country

                Location of free or inexpensive eateries for the accompanying caregivers

                Assistance in paper work relating to admission into Tata Memorial Hospital

                Navigating through the various services that Tata Memorial Hospital offers

                Emotional support avenues

Although a lot has been achieved, we at JASCAP realize that a lot remains undone as well. We would, for instance, like to set-up a patient helpline with a toll free number. The helpline staff could provide information about:

                Other hospitals in Mumbai that treat cancer patients

                Consultants and oncologists in private practice

                Diagnostic centers for running pathological tests for which there is a long queue at Tata Memorial

                Medical stores that deal exclusively in oncology drugs, provisions and prostheses

                Individuals and organizations offering financial assistance to cancer patients

                Affordable accommodation options

                Blood banks and blood donors

                Rehabilitation centers for after-care, once the treatment is over.

                Organizations helping in gainful employment of cancer survivors

                Hospices for terminally-ill patients

                Dealers in medical and supportive equipment such as beds, walkers, bedpans, oxygen cylinders and so on

The road is long. But, we at JASCAP are determined to soldier on.

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.

Register for the Conference Here

Patient Advocacy: Caring for the Bereaved

Patient Advocacy:Caring for the Bereaved

As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss

Talking about death is never easy. In A Grief Observed, author C.S. Lewis writes about his experience of his wife’s death, “No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning, I keep on swallowing. At other times it feels like being mildly drunk or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says... Yet I want the others to be about me.”

Everyone experiences bereavement at some point in life, but when it’s sudden and unexpected, the loss can be tremendous. The news can come as a big shock, completely throw a person off-balance and overwhelm him by a rush of emotions. As a patient-advocate, you can lessen someone’s grief by bearing in mind the following principles of care:

                Contact relatives promptly and stay with the family throughout, while liaisoning with the rest of the medical and nursing team.

                 

                Make available special provisions for the bereaved family, including a quiet place to mourn, and help them access spiritual support.

When bad news is delivered, it must be done gently and honestly, avoiding euphemism and long-winded medical explanations.

Provide both verbal and written information to the survivors: what to do next; mortuary procedures, possibility of a post-mortem examination; organ donation, if the family is interested or the deceased had expressed that wish; and details about grief counselling; and follow-up.

Grief creates a whirlwind of emotions, and can be a highly traumatic and devastating experience for some, leaving them incapacitated to deal with the reality of the situation. This is when an advocate’s help is needed the most.

The various stages of grief

As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss. In her pioneering 1969 book On Death and Dying Elisabeth Kübler- Ross identifies the following five stages of grief:

                Denial

                Anger

                Bargaining

                Depression

                Acceptance

The intensity and duration of each stage depends on the significance of the change or loss, and also the survivor’s personal resilience. Patient-advocates should use the following eight-step framework to help bereaved families:

                Select an appropriate setting

                Contact the family

                Prepare to speak to the family

                Tell them about the death, as gently as possible

                Study their reactions

                Allow them to view the body and stay close to them

                 

                Co-ordinate the respectful handling of the deceased’s body

                Assist them in follow-up actions, such as organ donation, arranging the post-mortem, getting the death certificate, preparing for the cremation, and so on.

                 

                Notifying death

                Breaking bad news is one of the most difficult and sensitive tasks that healthcare professionals have to perform, and poor communication skills can leave families confused, angry, scared and scarred. Patient-advocates must avoid elaborate euphemisms. Equally harsh in the Indian context are words such as dead or died. Use soft phrases such as “he has passed on,” “he has slipped away” and “we have lost her” and deliver those words sensitively.

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.

Register for the Conference Here

Patient Advocacy: Caring for the Bereaved

As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss

Talking about death is never easy. In A Grief Observed, author C.S. Lewis writes about his experience of his wife’s death, “No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning, I keep on swallowing. At other times it feels like being mildly drunk or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says... Yet I want the others to be about me.”

Everyone experiences bereavement at some point in life, but when it’s sudden and unexpected, the loss can be tremendous. The news can come as a big shock, completely throw a person off-balance and overwhelm him by a rush of emotions. As a patient-advocate, you can lessen someone’s grief by bearing in mind the following principles of care:

·                     Contact relatives promptly and stay with the family throughout, while liaisoning with the rest of the medical and nursing team.

·                     Make available special provisions for the bereaved family, including a quiet place to mourn, and help them access spiritual support.

When bad news is delivered, it must be done gently and honestly, avoiding euphemism and long-winded medical explanations.

Provide both verbal and written information to the survivors: what to do next; mortuary procedures, possibility of a post-mortem examination; organ donation, if the family is interested or the deceased had expressed that wish; and details about grief counselling; and follow-up.

Grief creates a whirlwind of emotions, and can be a highly traumatic and devastating experience for some, leaving them incapacitated to deal with the reality of the situation. This is when an advocate’s help is needed the most.

The various stages of grief

As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss. In her pioneering 1969 book On Death and Dying Elisabeth Kübler- Ross identifies the following five stages of grief:

                Denial

                Anger

                Bargaining

                Depression

                Acceptance

The intensity and duration of each stage depends on the significance of the change or loss, and also the survivor’s personal resilience. Patient-advocates should use the following eight-step framework to help bereaved families:

                Select an appropriate setting

                Contact the family

                Prepare to speak to the family

                Tell them about the death, as gently as possible

                Study their reactions

                Allow them to view the body and stay close to them

                 

                Co-ordinate the respectful handling of the deceased’s body

                Assist them in follow-up actions, such as organ donation, arranging the post-mortem, getting the death certificate, preparing for the cremation, and so on.

                Notifying death

                Breaking bad news is one of the most difficult and sensitive tasks that healthcare professionals have to perform, and poor communication skills can leave families confused, angry, scared and scarred. Patient-advocates must avoid elaborate euphemisms. Equally harsh in the Indian context are words such as dead or died. Use soft phrases such as “he has passed on,” “he has slipped away” and “we have lost her” and deliver those words sensitively.

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.

Register for the Conference Here

Patient Advocacy: How to Deliver Bad News

One of the main goals of a patient advocate is to support grieving families in accordance with their cultural values and personal preferences

One of the most challenging tasks for patient-advocates is to deliver bad news about impending death to a family. It is never an easy task, even for the most seasoned of healthcare professionals.

Dr Sudhir Bhatia, a senior internal medicine resident receives the lung biopsy results for Tushveen Khanna, an attractive 26-year-old patient, who has her whole life ahead of her and is busy shopping for her wedding planned for next month. Khanna’s test results show she has an advanced stage of lung cancer.

According to standard medical protocol, Dr Bhatia orders a PET scan and requests a consultation with a cancer specialist. An hour later, a nurse phones to inform him that the distraught patient has refused to undergo the PET scan until she sees her doctor. It suddenly strikes Dr Bhatia that no one from his team has discussed the biopsy results with the young woman and prepared her for what lies ahead. Sometimes, doctors are so focussed on “treating” abnormal test results that they forget about the patient.

When he finally gets to see her that evening, Dr Bhatia finds her sleeping, with a young man keeping a watchful vigil over her. Dr Bhatia gently wakes up the patient. “Hello, Ms. Khanna. I’m sorry to wake you, but I need to speak with you about your biopsy results. Unfortunately, it’s positive. I’m afraid it looks like you have lung cancer. We need to run another check on you, a PET scan, which would determine the spread of the cancer, but the nurse told me that you have refused it. Meanwhile, I’ve asked Dr Mukhesh Batra, who is a specialist in lung cancer to also come and examine you. Do you have any questions?”

The girl looks at him wide-eyed and scared. Her fiancé is equally bewildered. For a brief moment, they are both silent. Then finally, he speaks up, “I thought she had pneumonia. Now all of a sudden she has cancer?”

Before Dr Bhatia can respond, the poor girl bursts into tears and exclaims, “I don’t want to get any more tests done! I just want to go home!” “She is right. We just want a discharge,” says the young man.

Their reaction catches Dr Bhatia off guard. Didn’t the news sink in? Didn’t the girl and her fiancé understand what he has just told them about the biopsy results? Suddenly he is unsure what to do next. He has three more patients to see before he can leave for dinner and home. He tries to calm down the young girl and persuades her to get the test done, but she adamantly digs her heels in. Dr Bhatia suddenly feels helpless and cannot understand why the patient is being so uncooperative. He tries to hide his frustration as he decides to leave to find the oncologist and get him to talk to his distraught patient.

No marks for guessing where things went wrong in the first place.

Is it necessary to tell the patient?

The answer is yes.

Fifty years ago, it was standard practice in India to withhold the diagnosis of advanced cancer from a patient. Often the relatives themselves pleaded with the doctor to hide the truth from the patient, because they were worried that the patient would not be able to digest the “shock.”

However, mindsets have now matured. Studies have shown that patients do want to have the correct diagnosis, even if it is bad news, because they don’t want doctors and family members to play games with them. It is important that patients are given all the medical facts, especially about their own health. They have a right to know, so that they can make informed choices about their medical, personal and legal matters.

Undoubtedly, breaking bad news to critically-ill patients can be a challenging task but for the healthcare professional, it’s an occupational hazard that comes with the territory. For a young and inexperienced physician, it can be particularly stressful, especially when the patient, as in this case, is young and there are limited prospects for recovery.

This is where a patient advocate can help. She can help all the stakeholders - the doctor, the patient and the family - in managing the medical crisis by providing truthful and accurate information about possible health outcomes, without deflating the patient’s hopes for recovery. Indeed, breaking bad news kindly and managing a patient’s expectations is one of the most important tasks that a patient advocate can discharge. The advocate has to be wise like the Roman God, Janus, and be able to see both the doctor’s perspective, as well as the patient’s, so they can both talk with each other.

Stick to the medical facts

Patient advocates might find these tips on how to soften the blow useful…Start from what the patient understands. Begin at his level and use words that are devoid of medical jargon, so that a lay person can understand them easily.

                Try to substitute non-technical words such as “spread” for “metastasised” and “sample of tissue” for “biopsy.”

                Avoid careless bluntness (e.g., “You are at the terminal stage and unless you get prompt treatment, you are going to die.”). Even if this happens to be the crux of your message, it has to be cloaked in sensitive language.

Hand out information in small, digestible chunks and check periodically to ensure that the patient has understood what you are saying. You may need to repeat what you say, in order to ensure that the information sinks in, so be patient.

·         When the prognosis is poor, avoid phrases such as “There is nothing more we can do.” The truth is that there is always something which can be done to help the patient and even if we cannot cure, we can always relieve pain and suffering. Unkind, fatalistic pronouncements interfere with helping the patient achieve other important therapeutic goals, such as pain control and other symptom relief.

·         Never abandon the patient. Always let her know that you are there for her, no matter what.

Responding to the patient’s emotional reactions is one of the most challenging tasks for an advocate. The patients’ reactions may swing wildly from silence to disbelief, crying, denial, shock, grief or plain anger. She may use you as a punching bag, so be prepared to act as an outlet for outbursts.

An empathic response calls for four kinds of interventions:

                Carefully observe and remain alert to any exaggerated display of an emotional reaction, such as stunned silence.

                If the patient appears extremely miserable, use gentle probing questions to nudge them into producing a reaction, even if it entails triggering a rush of tears. Bottled-up emotions can harm a patient, and they should feel comfortable in sharing their deepest fears and worries with you.

                Identify the reason for the emotion. If you are not sure, ask the patient.

                Finally, after you have given the patient a brief period of time to express her feelings, pledge your support and explain to her that you will stand by her side to hold her hand; and that she is not alone.

Communication strategies

Here are a few communication techniques that you, as an advocate, can use with critically-ill patients:

                Warn her that difficult news is forthcoming. You can do this by stating, “I’m afraid the results reveal the situation is more serious than we would have hoped for...”

                The patient is your first priority. However, if she wants other people present at this time (for example, her spouse), be sure to attend to them as well.

                Sit down and speak slowly, clearly and concisely.

                Provide the information in small chunks; do not give a long lecture, which can be overwhelming for an anxious patient.

                After discussing each segment, pause to allow the patient to take in what you have stated. This is known as “chunk and check.” To ensure understanding, you must ask the patient to repeat what you have said in her own words. This is called the “teach back” or “show me” method.

                 

·                     Be honest about the prognosis; do not give false hope. Be sensitive, yet direct.

·                     Be empathetic (e.g., “I know this is difficult for you.”)

·                     Don’t do all the talking. Allow the patient to ask questions and to vent.

                 

All said and done, bad news must be delivered after carefully assessing a patient’s level of understanding, compliance, and wishes for disclosure. Speak slowly so that the patient and her family understand. Choose your words thoughtfully and try to avoid causing any unnecessary mental anguish and anxiety.

Last but not the least, a patient advocate can help to reassure the patient that her doctor will abide by three solemn commitments to her critically-ill patient:

·                     That every effort will be made to treat and relieve her pain and other symptoms.

·                     That her physician will not abandon her in this difficult hour and will be actively involved in the care process, every step of the way.

                That he will support and honour any decisions that the patient or her family makes on her behalf.

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.

Register for the Conference Here

Patient Advocate’s Responsibilities Towards Critically Ill Patients

Patient Advocacy

Giving Voice to Patients

Advocates can help a patient or his family make important decisions in an emotionally-charged medical scenario

In the ICU (Intensive Care Unit), treatment decisions are based not just on medical grounds or statistical probabilities. They are emotionally-charged decisions, with significant cost implications, that a patient advocate can help the patient deal with.

The clinical director of an Intensive Care Unit (ICU) once described a dilemma he faced in having to decide whether to withdraw intensive care treatment from a woman in her mid-seventies. The patient had undergone emergency surgery to repair a ruptured aorta, and subsequently developed pneumonia and renal failure. She was sedated, placed on a ventilator and treated with dialysis. Days passed during which the medical team could not agree on the next course of action - whether to withdraw the life support system and allow the woman to die peacefully, or continue the intensive care at a steep cost to the patient’s family. Was the care futile? Or did they have a chance to save her life?

Since euthanasia (mercy killing) is illegal in India, eventually a compromise was reached, which involved waiting a further 48 hours to see if continued ‘full’ treatment produced any improvement in her condition. If not, the doctors decided they would not make any aggressive efforts to save her life and would wean her off the ventilator in a careful, phased manner.

This was an emotionally charged decision – as all such “end of life” conversations can be - both for the doctor and the family. Eventually, a patient-advocate was called in, who served as a useful communication bridge between the two parties. The doctors explained the medical facts of the case to the advocate, who in turn, explained them to the family, in more simplified terms. She gave them enough time to process this information; was patient and answered all their doubts and questions; helped them to play out possible scenarios and outcomes; allowed them to negotiate with each other; and acted as a neutral referee when there were heated arguments. The family members felt comforted that their voices were being heard by the medical team and that they were participants in the decision-making process. Everyone was actively involved and they eventually reached a decision that they were all comfortable with, so she could die in peace, without meddlesome interventions. If they had been left to their own devices, without any support from an advocate, the family may not have been able to make a well-informed decision and would have been forced to passively watch their loved one suffer pain and misery while she progressively deteriorated.

When framed this way, the family did not feel guilty that they were abandoning the patient or allowing her to die, just to save their money. They realised that this was a decision they were all making, in her best interests, because the chances of her being able to lead a productive life were so slim. Such critically-ill patients can be found throughout a hospital - in emergency departments, post-anesthesia recovery units, interventional cardiology labs, pediatric and neonatal intensive care units, and burn units - and a well-trained experienced patient advocate can help both the medical team and the family to make decisions they are comfortable with.

Here’s another real life story. A man received a frantic call from his daughter-in-law, asking for help. Her husband had met with a terrible road accident. When he arrived at the hospital, he discovered that his son had several fractured ribs, bruised lungs, and a fractured skull and to make matters worse, he had serious breathing problems that required him to be quickly put on the ventilator for respiratory support. The patient was unconscious and remained in that comatose state for four long weeks.

The patient’s father, who is a friend, later confided in me that when he first laid eyes on his son, he experienced a feeling of “terror.” Tears welled in his eyes as he felt a wave of anger and impotence. As a person who always likes to remain in charge, he suddenly found himself in unfamiliar territory, frightened, clueless and helpless; trapped in a situation in which his son’s life lay in balance and all the crucial decisions related to his life were being taken by total strangers. That’s when he decided to bounce back and asked to become a part of the treatment team. He decided to appoint himself as his son’s “advocate.” Fortunately, the medical team was also receptive to this idea and was happy to have him on board. They willingly shared the responsibility for decision making with him. By assuming ownership of his son’s care plan, rather than leaving everything upto the doctors, the father helped his son to make a quick and total recovery.

Why do you need a patient-advocate for seriously-ill patients?

In reality, you need one in every unfamiliar medical situation. Self-proclaimed experts with half-baked information can strike fear in your mind when you have a medical problem. What if your fibroids are malignant? If you have gall bladder stones which aren’t troubling you, should you allow the surgeon to completely remove the organ? Is the ECG really abnormal, or is the squiggle a normal variant? Should you agree to do the stress test because of your chest pain? Or is it just heartburn, which will get better soon?

Someone has to find answers to these questions and it can be a lot better if that person is a concerned family member or a trusted friend in whose judgment you can repose complete faith. Let’s face it: there are good doctors around, but their number is dwindling alarmingly.

                How do you cross-check your doctor’s opinion?

                Are there simpler treatment alternatives available which he has not discussed with you?

                Will your health insurance company pay for your full treatment cost? Or will they do their best to reject your claim on every flimsy pretext they can think of, to save themselves some money?

There can be myriad worries, doubts and questions plaguing you before a complicated medical procedure. Where do you go for help and guidance? While your doctor is naturally your first choice, what happens if he is too busy, or unconcerned? Or if you cannot understand his medical jargon; or if you suspect he has a vested interest in recommending complicated surgical solutions that may not be actually required. Here’s where a patient advocate can be invaluable. Typically, there can be four kinds of events that call for the intervention of a patient advocate:

Life-threatening situations: Sudden accidents or emergencies, where you are unable to make an intelligent, informed decision on your own. You may be unconscious, or heavily medicated.

High-risk situations: Typically, a high-risk patient faces potential threat to life, limb or organ. Such patients need very alert attendants to watch over them. A patient advocate who bats for you can employ a heightened “sixth sense” that comes from experience and maturity. A high-risk patient’s condition can easily deteriorate, and urgent intervention can prevent a bad situation from getting worse. Doctors, especially big-name specialists, often have to deal with so many patients, that they can’t be counted upon to be fully engaged with one patient. The bigger the reputation, the less likely it is that the doctor will be able to devote his full attention to one patient, howsoever critical her condition may be, unless she has come to her with the right references, either from a medical colleague or a “political connection.” There is no dearth of horror stories related to medical negligence in both public and private sector hospitals all over the world. This is what makes the presence of a patient advocate all the more important.

You are recovering from severe physical or psychological trauma: This may not be a life-threatening situation, yet requires decision-making that has serious long-term implications, and you may not be able to think clearly for yourself at this time.

Chronic medical conditions: There are many conditions, such as cancer, arthritis, and heart disease, in which even educated well-informed patients find it hard to choose the right treatment option, because there are such a bewildering variety of choices available today.

An advocate mobilises scarce resources

For starters, an intelligent, experienced patient advocate needs to know - How many different kind of resources is this patient going to need in order for the physician to treat her most efficiently and effectively? Does the patient need immediate blood transfusion? Financial aid? A second opinion? The patient-advocate needs to draw on her past experience with similar patients, so she can mobilise these resources well in advance, rather than having the doctors make the family members run around at the last minute.

An advocate needs to make an accurate assessment of the patient’s condition, to determine what sort of help would be needed over the course of hospitalisation, and to judge how fast it can be delivered. In order to be able to do this, the advocate must be familiar with the hospital’s facilities and also be knowledgeable about “prudent and customary” medical standards of care.

Ask yourself, “Given this patient’s condition, what are the main resources that a physician would be likely to utilise?” The resources that we are talking about here can be:

                Specialised pathological tests

                Blood and blood products

                Imported medicines

                Consultations with other doctors

                Sophisticated imaging studies

Most of all, a patient advocate needs to empathise. She needs to ensure that a patient is not just a ‘medical case’ for the hospital staff – she is someone’s wife, mother, sister, child or a friend. Every medical decision is going to affect these people as well. There could be so many lives hanging on that one single life, so the decision she takes on the patient’s behalf has to be reached with the active involvement of all these stakeholders.

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.

Register for the Conference Here