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
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.