Thursday, September 26, 2013

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:

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
                99Assist 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.

Divine Healing: Practical Session On Prayer And Meditation

A Free Talk On "Healing: Practical Session On Prayer And Meditation by Dr. R. C. Shah" 3..30 pm 
 at HELP

Wednesday, September 25, 2013

Tuesday, September 24, 2013

Monday, September 23, 2013

The Problem of Defining Death

Often a patient-advocate has to transcend artificial boundaries to counsel her clients in an objective, value-free manner
Because a doctor-patient relationship is so personal, intimate and special, it often raises a number of ethical dilemmas. One major controversial issue, a discussion of which often raises more heat than light is: how do we define death?
Liberals argue that physicians and family members must respect a critically-ill patient’s personal decision to forego life-sustaining treatment (“life-sustaining treatment” implies the use of mechanical ventilation, renal dialysis, chemotherapy, antibiotics, artificial nutrition and hydration). Unfortunately, in medical practice, there is no ethical distinction between withdrawing (stopping once it has been started) and withholding (never starting) life-sustaining treatment - while in real life, there is a world of a difference between an act of commission (do we start life support?) and an act of omission (do we discontinue the life support the patient is already on?).
A competent, adult patient may, in advance, formulate and provide valid consent to withholding or gradually withdrawing life-support systems, but if these advance directives are not available, then a patient advocate should be able to counsel the patient’s family in reaching the right decision that serves the best interests of the patient. Patients should also be able to appoint surrogate decision-makers who can make decisions on their behalf, in case they are not able to, in accordance with the prevailing law.
Surrogate decision-makers
Patients do not automatically lose the right to refuse life-sustaining treatment merely because they are medically unable to make such decisions for themselves. Authorised persons can be legally allowed to make treatment decisions for them. In every country, including India, the law recognises a hierarchy of surrogate decision-makers who can be relied upon to take crucial decisions related to a patient’s treatment, on the patient’s behalf. Physicians, in turn, have the responsibility to make a “reasonable inquiry” as to whether the patient has a legal guardian,
or if someone else (such as a patient-advocate) has the power of attorney over end-of-life healthcare decisions.
This kind of a decision-making is often vested in:
                The patient’s legal guardian
                The patient’s spouse
                An adult son or daughter
                Either parent
                An adult brother or sister
                An adult grandchild
                A close friend
                The guardian appointed by the estate

If there are multiple surrogate decision-makers present, they may be asked to reach a consensus on behalf of the patient. If there is conflict among them, this will need to be resolved. Though the surrogate’s decision for the incompetent patient should almost always be honoured by the doctor, there can be four exceptions to this rule:
                There is no available family member willing to be the patient’s surrogate decision-maker;
                There is a dispute among family members on what decision to take
                There is sufficient reason for the doctor to suspect that the family’s decision is clearly not what the patient would have decided if she were competent; and
                If the doctor suspects that the decision is not in the patient’s best interests

Let’s take the following illustrative case:
Kartar Singh (82) is the patriarch of a large Sikh family. He suffered haemorrhagic stroke two months ago that left him paralysed and in a partially vegetative state, unable to communicate in any meaningful way. His families’, including his daughters and granddaughters began to care for him at home and have been feeding him by mouth for the entire duration of his illness. Last week however, his condition deteriorated and he is now having difficulties swallowing.

Dr Abdul Rehman, his physician for the past eight years, suspects that his patient may have had cerebral bleeding that worsened his condition. He is concerned that Singh may choke on food or aspirate, causing a chest infection, which would further complicate matters for the patient. Dr Rehman discusses the case with Singh’s daughters. They want to continue caring for their father at home including feeding him by mouth and looking after his nutrition and hydration needs, if that is at all possible. They are also convinced that their father would have expressed the same wish, had he been able to communicate. The family is extremely concerned that if he goes back into the hospital, he may not come back home alive.
After careful discussion of the case with the family, during which Singh’s eldest daughter acts as his primary patient-advocate, it is agreed that for the time being the patient would continue with the care delivered at home. However, just as the doctor suspected, two weeks later, Singh has to be rushed to the hospital with a chest infection caused by aspiration of food into his lungs. He is treated with IV antibiotics and a drip is inserted to provide hydration and stabalises his condition. A CT head scan also confirms progressive cerebral bleeding.
The family is struggling to come to terms with their father’s condition. They are unprepared for this eventuality, so the well-meaning doctor arranges for a third party advocate, a Sikh priest to come and speak with the family, and explain to them what might happen if they insist on taking the patient home in this critical condition.
On the sixth day, Singh dies peacefully in the intensive care unit of the hospital, surrounded by his loving family members. The family feels indebted to the priest and the doctor’s team, who extended them just the kind of direction and moral support they needed in their time of need.
A trusted, wise and respected member of society can often be called in to play this role at the last minute. Religious leaders, in whom the family reposes full trust, deal with such challenging situations, almost on a daily basis. However, rather than having to run around to hunt for a patient advocate at the last minute, it’s much better to appoint one well in advance, so that the family can bond and establish a relationship with her.

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, September 21, 2013

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.

Friday, September 20, 2013

Thursday, September 19, 2013

A Matter Of Choice Part 1

A Free Talk On "A Matter Of Choice Part 1 By Mr. Behram Ghista" 3..30 pm at HELP

Wednesday, September 18, 2013

The Right to Informed Consent in a Clinical Trial

A patient participating in a clinical trial has the right to know all the information regarding the trial, including its potential benefits and risks, so that he can make an informed decision
Clinical trials are scientific research experiments, conducted on human volunteers in order to find new ways to prevent, detect and cure diseases. Medical science has grown leaps and bounds on the back of such biomedical research. When done properly, such studies are very useful in improving our medical knowledge base.
However, not all clinical trials are conducted ethically. This is especially true in India, which is fast becoming an attractive destination for carrying out clinical trials, primarily because we have a huge and diverse pool of patients on whom these trials can be conducted fairly inexpensively. Many of the patients chosen are uneducated, who can easily be exploited by doctors, researchers and pharmaceutical companies, alike. Unethical researchers (who get paid huge sums for signing up as many participants as possible) may exaggerate the benefits of a treatment, offer financial sweeteners, or attempt to play down the risks of the trial.
In 1997, the oncology division of the Indian Council of Medical Research (ICMR) carried out an observational study on cervical cancer in Indian women. The study did not have any ethical clearance from the All India Institute of Medical Sciences (AIIMS) from where the subjects were drawn ; nor did the researchers get informed consent from the subjects themselves. Under the ICMR study, 1100 uneducated urban women from Delhi with pre-cancerous lesions were studied between 1976 and 1988. The objective was to study the natural progression of cervical dysplasia to cervical cancer (the most prevalent cancer amongst Indian women) without any medical intervention. So despite the fact that a simple surgery would have removed the cervical lesions, before they could turn cancerous, the women were wantonly left untreated. The outcome was that 62 of these women needlessly developed cancer; and in nine the disease had already spread to other parts of their body.

In another equally scandalous incident, an Indian scientist attempted to inject the bovine HIV strain into a human subject. This research was also not approved by any ethical body. Likewise there have been reports of a pig’s heart transplant into humans; and controversial trials with mepacrine, an anti-malarial drug that is injected into a woman’s uterus for contraceptive purposes, although some doctors suspect it causes cancer. Although every hospital unit is supposed to have its own ethical committee, in our country most are defunct bodies. The National Human Rights Commission (NHRC) guidelines propose that a research group must provide human subjects with printed literature, explaining in simple, non-technical language, the purpose of the study; details of the procedure; the risks involved; the financial or other interests of the researcher; and a commitment to treat, completely and free-of-cost, any complication that may arise during the course of the trial.
Audio-Video Recording of Consent Process Will Soon Be Made Mandatory
While it is important that clinical trials need to be allowed in India, these have to be fair and transparent. With a view to curb the practice of procuring illiterate subjects and making them sign consent forms which they do not understand, the Union health ministry is planning to amend the Schedule Y of the Drugs & Cosmetics Rules to make audio/video recording of informed consent process in clinical trials mandatory. The amendment seeks to ensure that the trial subjects are adequately informed about the failure of investigational products. The purpose is to make participation in clinical trials voluntary.
(Source: aspx?aid=71218&sid=3)

The subject too has to certify in writing that she has understood the document and is volunteering to participate in the research, without the promise of any monetary inducement that is not permitted under the Indian law. There are a few other government bodies that monitor clinical trials such as the Drug Controller of India and the Clinical Trial Registry in India (CTRI). Nonetheless, the Supreme Court recently expressed reservations about the unethical way in which most clinical trials are being conducted in the country, and has directed the Ministry of Health to formulate proper guidelines on this, to protect patients’ interests. According to existing rules, an ethically sound clinical trial:
                Will aim for the enhancement of medical knowledge
                Will have strong scientific validity
                Will recruit participants fairly
                Will have a favourable risk-benefit ratio

Will have people who independently review, approve, amend or terminate it
9Will obtain informed consent from its participants
9Will respect the participants privacy and will strive hard to protect their wellness and rights
Role of patient advocates in clinical trials
Patient-advocates can play an extremely important role in clinical trials. Among other things they are required to:
                Make sure whether the information about the trial is presented in a format which is easily understandable to the patient
                Assist the research team in developing relevant educational materials about the trial in lay-friendly terms that is simple and easy to understand
                Identify and address potential ethical issues in the trial
                Promote patient safety and confidentiality
                Assist the research team in obtaining valid informed consent from the patients, recruited in the trial

QUIZ TIME: Informed Consent Quality Assessment Questionnaire
Use this form to gauge patient’s understanding of their participation in clinical trials
·                     Do you feel that you have been informed how long your participation in this clinical trial will last?
·                     Do you think that all the treatments and procedures that the investigator proposed for you are the best for your disease?
·                     Do you understand what “randomisation” means?
·                     Do you know that no direct medical benefit will derive to you from your participation in this clinical trial?
·                     Are you sure that your participation in this trial will not involve any additional risk or discomforts?
·                     Do you know that because you are participating in a clinical trial, it is possible that the study sponsor, various government agencies, or others not directly involved in your health care could have access to your medical records?

·         Do you know that the consent form you signed lists the names of the contact persons, who must answer any of your questions or concerns about the clinical trial?
·         Do you know that the consent form you signed describes how you will be covered by insurance if you are injured or become ill as a result of participation in the clinical trial?
·         Do you understand that if you do not want to participate in the clinical trial you are free to refuse to sign the consent form? This will not affect the quality of medical care you receive, so you do not need to be scared that your doctor will get angry or upset if you refuse to participate.
·         Do you understand that you are not obliged to remain in the clinical trial if you decide to withdraw at any point of time?
·         Explain in your words the purpose of the clinical trial to which you have consented to be a subject.

A patient-advocate who uses such questionnaires with patients who have been recruited to participate in a clinical trial will help to protect the patients; and will also ensure that the research team is never caught on the wrong side of the fence.

Tuesday, September 17, 2013

Right to Privacy and Confidentiality

The 1997 medical ethics guidelines proposed by the National Human Rights Commission debar doctors from sharing a patient’s confidential information for any monetary inducement

The exchange of information between a doctor and patient is always confidential and personal. Confidentiality helps patients to be frank and honest with their physician, which in turn leads to better health outcomes. A good doctor will protect patient privacy, as it helps build trust and bonding between them. The issue of confidentiality needs to be addressed even more urgently with the introduction of electronic medical records, which can be shared easily with the click of a mouse. Although the electronic exchange of health information offers significant benefits, it increases the risk of inadvertently exposing private medical information.
The meaning of confidentiality
Because patients share so much sensitive, private and personal information with their doctor, the duty to maintain confidentiality has been enshrined in the Hippocratic Oath. The International Code of Medical Ethics states that “A physician shall preserve absolute confidentiality about all he knows about his patient, even after his patient has died.”
As per the Medical Council of India Code of Ethics Section Clause 7.14, “The registered medical practitioner shall not disclose the secrets of a patient that have been learnt in the exercise of his/her profession except –

i) In a court of law under orders of the Presiding Judge;
ii) In circumstances where there is a serious and identified risk to a specific person and/or community; and
iii) Notifiable diseases. It is his duty that he should inform public health authorities immediately about any communicable or notifiable disease. “

Of course, matters become more complex when there is a conflict between the right to privacy and the right to health of another individual.
Ideally, information about a patient’s records should not be released to anyone outside of the hospital without the patient’s authorization, unless it’s being shared with another healthcare facility to which the patient is being transferred, or if the release has been ordered by a court. If this is being done under a third-party payment contract for research work on aggregated statistics, information sharing is permissible, provided the patient’s identity is masked.
When software engineer, Abdul Mustafa (name changed) tested HIV-positive, he did not want his employers or his friends to know about it. Had the doctor still gone ahead and divulged this information, it would have amounted to a breach of trust and the confidentiality proviso. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) in the USDA made several sweeping changes relating to privacy and confidentiality of medical records. It established privacy procedures, the need to inform patients about these procedures; the need to train employees to follow strict privacy guidelines, and the importance of designating an individual to oversee the healthcare organisation’s privacy initiatives. In India, where such laws don’t exist, it’s important that patients seek the help of patient-advocates in securing their right to privacy and confidentiality.

Shh….A Patient Has the Right to Confidentiality Patients need to be confident that the doctor will protect their confidentiality. Thus, if you don’t want your psychiatrist or your infertility consultant to call your secretary to leave a reminder about your next appointment, please make this request in writing.

Yoga Nidra

A Free Talk On "Yoga Nidra  By  Mrs Mangala Sarda " 3..30 pm at HELP

Monday, September 16, 2013

Saturday, September 14, 2013

Thursday, September 12, 2013

Friday, September 6, 2013

Thursday, September 5, 2013