Doctors and Patients: Better Partners than Ever By Kara Magsanoc-Alikpala Founding President, I Can Serve

(A speech delivered before the Philippine Society of Otolaryngology; November 29, 2005, Westin Philippine Plaza ) 

Eight years ago, I don’t think your organization would’ve thought of inviting me as keynote speaker, nor any patient for that matter. 

Many sweeping changes have taken place between doctor and patient in the last five years. 

By being here, I consider it a giant step in the patient advocacy movement.  Last month, another volunteer from my I Can Serve foundation, Bibeth Orteza, a patient advocate as well, was the keynote speaker at another medical convention. We’re making headway! 

Eight years ago when I was diagnosed with breast cancer, my relationship with my doctor was paternalistic not typical of the  relationships today which is more of a partnership. Back then, it was like confessing to a priest. I told the doctor what was wrong , he told me what to do to make it right.   

No questions entertained. 

That time, patients were like children, better seen than heard. Perhaps it was a product of the times. I was also raised not to question authority. Questioning authority meant disrespect. 

Five years ago, Dr. Linda Amante of Bristol Meyers wanted to fast track the growing patient advocacy in the country.  She would invite me to almost all medical forums, big or small.  

I would sit in a panel with doctors. Sometimes, I would be allowed to speak for a few minutes. But no fail, during the open forum, no doctor in the audience seemed to have a question for me. 

The moderator who was usually a doctor would always have to think up of a token question. And it usually was, ”How did you cope with cancer?” 

Of course I appreciated the question. But for me that meant the doctors thought my cancer was simply a personal experience. Few saw it as a means to empower other patients.  

There seemed to be stalemate as the gap grew between what the patients wanted and what doctors were giving. In fact, eight years ago when I asked an oncologist  his thoughts of  cancer support groups or advocacy groups, he said, “they tend to confuse the patients since support groups give wrong information. They tend to interfere with doctor’s orders.” 

I think the turning point in this country,  for the doctor patient relationship and the patient advocacy movement was the information revolution, particularly the internet. The widest and cheapest library in the world. 

Doctors no longer had a monopoly of information and almost had no choice but to allow the patients a voice.  Patients started to read what doctors read. Even hard to understand journals and research papers were being written in layman’s terms on the net. 

In the Philippines, if I remember right, people started to use the net in the early to mid ‘90’s.  

But it’s only in the last five years that reliance on it has almost taken over our lives. 

The Internet revolution has provided patients with control over their medical data and health.   

Control is such an important concept for cancer survivors.  It is the most important thing they surrender, without choice.   

All of a sudden, they feel they have no control over their life expectancy—not that any of us do, but you feel the reality strongly when told you have cancer.  

They lose control over some bodily functions. They lose their hair, their appearance, their self esteem. They lose a lot of their savings, or lose face borrowing money to pay for treatments.   

Others lose a spouse or a boyfriend not willing to support the woman emotionally through the crisis.   

Having information, is the only sense of control they have left. And one of the best ways the patient feels in control is when she knows she can ask questions or ask for an explanation. 

I felt exactly this way when I was at  at Stanford Hospital where I sought a second opinion.  

The doctors there gave me so many options and expected a decision in a week.   

I didn’t even question what they had just told me even though it made me panic.  

I was not used to this arrangement. My doctors in Manila made decisions for me. Or I relied on my father and brothers who were doctors and my patient advocates. Now everything depended on me. 

I crammed and gathered all the information I could find. 

On the day I had to give the decision, I still didn’t have one. I remember vividly walking in the Stanford parking lot quivering as I took each step toward my doctor’s clinic. I couldn’t even talk straight.  

Like magic, I snapped out of it in an instant when I realized  the power within me. I told myself, “I’m a broadcast journalist used to asking questions. Why don’t I ask the doctor questions to help clarify the limited information I gathered at such limited time before making a decision?  

The mere fact that I could feel like a journalist in command of an interview made me regain some of control. Journalist or not, patients should feel like one. 

Fear disappears when replaced with information and control. 

Today, lack of information is no longer a problem. In fact we have too much information that shoots rapidly. The challenge lies in knowing which one is accurate and credible. 

But doctors shouldn’t feel discouraged that their patients could fall prey to wrong information. 

I know some doctors freak out when patients enter the clinics with pages and pages of printouts of medical info from the internet. 

But my brother Dr. Nikko Magsanoc a urologist welcomes this and takes a pre-emptive strike. He points them to the right websites. That way he immediately sorts out the bad information for them. Of course this is not to say, he doesn’t discourage them from visiting other sites. 

Despite this revolution, nothing can replace the face to face interaction between patient and doctor. Patients will always seek their doctors for reassurance and wisdom. They need help in sorting out fact from fiction. Neither the internet nor a patient advocate can replace a physician’s assessment of the risks and benefits for a patient. 

As patients are empowered with information, the dialogue with their doctors takes a higher level since the patient can understand complex issues.   

Eliminating confusion can save the patient and doctor time in the clinic. It allows for both to focus on the really pressing matters. And this is important today where everyone seems to be over scheduled. 

My brother said he also appreciates informed patients because he is kept on his toes. And for patients under  a  the care of a team of  doctors, this keeps the members of the team alert as well.   

Some patients check in regularly with every member on her medical team. When this happens, and it usually happens briskly--thanks to another gadget, the cell phone--the doctors in the team have to keep up to speed so they are all on the same page, so to speak, when the patient calls. 

In fact if you have a healthy relationship with your patient, trust that she or he will make sensible decisions you will agree with, or at least respect. 

It’s like parents raising children. When the child grows older and spends more time with friends, parents worry, “Will my child chose the right friends?”  “Will he or she try drugs?” “Will he or she turn alcoholic?”  There are a thousand and one things to worry about. 

But as my Mom once assured me, “at that point, you’ll just have to trust the way you raised your child, the values you imparted, the lessons you taught, the good examples you showed.” 

Of course there are exceptions to the rule, but that’s the same for a doctor and patient relationship. A healthy doctor patient relationship will withstand wrong information and wrong decisions. 

In fact, most patients I know who abandoned their doctors and chose the alternative route all the way, came from unhealthy relationships, with their mainstream doctors. The more traumatic the more extreme they go.

 
Many healthy patient doctor relationships I know have transcended the clinic and have evolved into partnerships in patient advocacy.   

One of our foundation’s volunteers, Ina Vergel de Dios,  along with Dr. Francis Lopez and Dr. Gary Lorenzo started a  first class chemotherapy  room at the VM Potenciano hospital, the former Polymedic Hospital, to service indigent patients. They also devised a way to give the patients access to cheaper medicines. 

Access to the information highway is not limited to those who own computers. Some indigent patients I meet have access to the internet through their children who are computer literate.   

They may not be as informed, as those who can afford, but they are no longer totally ignorant compared to eight years ago. 

The indigent patients also have access to support groups or patient advocates in the public hospitals, who in turn have access to a wealth of information and resource persons. 

And due to the information revolution, support groups no longer  require members to be in the same place at the same time. There is a wealth of on line support groups, chat rooms and discussion forums on the net. 

In my foundation, we have an on line community where we talk with cancer survivors from Cebu, Catanduanes, Bicol, Davao, Leyte, Cagayan de Oro, the Middle East, Europe, the U.S. etc. 

Sometimes I noticed it’s easier for cancer survivors to talk freely when there is no face to face encounter. And without the pressure of time, they can speak their minds as thoroughly as they can and pose well thought out questions. 

I also hear a lot of patient coping strategies that I’ll never hear from doctors. In fact, a lot of patients seek second opinions from other patients first. 

They come out feeling optimistic, regardless of their prognosis and face their doctors in a lighter mood. Doctors have told me it’s been easier to talk to patients when they feel upbeat. 

There is such a demand for information as there is for cheap and free cancer medications that in the 5 year existence of the foundation’s hotline, all the callers or letter writes are hungry for information, not pity. We never got a call where a patient was crying uncontrollably and feeling helpless. 

We are well aware that some patients can abuse their so called patient power. That is why we remind them that their relationship with their doctors should stand on mutual respect.   

As medical consumers wanting the best, we also tell patients   they should do their share.  They should come prepared with their records and other information on their illness.  Get their story straight. Prepare questions ahead of time. Bring a relative or a friend who can help advocate for her or at least help remember the conversation with the doctor.  Take notes and maintain an orderly filing system of records.  

Of course there are cases where doctor and patient are simply incompatible just like other couples. And it’s simpler to change doctors or seek other opinions first. 

As patients become more informed, they’re more effective as patients, and doctors are more effective as doctors. When people are well informed, and feel supported by their doctor, family and friends, they cope better emotionally. There is also a likelihood that they will do better with their treatment. 

Recognizing the importance of a complete support system, hospitals offer complementary medical care. They have hospital based support groups, offer acupuncture, meditation, nutritional counseling, forums for relatives of patients etc. 

Doctors too are more pro active in organizing and volunteering for lay forums. 

Cancer is a multi faced disease and no one person can address all facets. Not the doctor, not the patient advocate. 

That’s why now more than ever, collaboration and cooperation is important. 

When our foundation organized “Silver Linings,” the first nationwide homecoming and forum for breast cancer survivors last September, we wanted to strengthen patient power by gathering our sisters scattered all over the country to face the common enemy. 

“Silver Linings“ was a big hit. We proved there was an audience. We proved there was a need to define and strengthen the breast cancer community. We attracted hundreds of patients from all over the country.  

But what we at the I Can Serve foundation didn’t  prove was that we could do it alone. In the course of planning, we realized we needed everybody. Not just other patient support and advocacy groups.   

We had to tap doctors, specialists, nurses, medical secretaries, drug companies, TV and Radio Stations, PR strategists and a host of other sponsors and supporters including our family and friends. 

In behalf of all patient advocates, I would like to assure the doctors here today, we are your partners.  

Patient power is not confined to patients.  It needs everybody’s support especially yours. Patient power is people power. 

Better information leads to better choices. Better choices leads to better health.

Thank you.