Giving Voice to Patients
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.
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?
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.
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.
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.
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.
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?
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?
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.
do you cross-check your doctor’s opinion?
there simpler treatment alternatives available which he has not discussed with
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:
situations: Sudden accidents or emergencies, where you are unable to make an
intelligent, informed decision on your own. You may be unconscious, or heavily
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.
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.
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.
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.
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:
with other doctors
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.