After reading a spirited discussion on the role of the patient advocate in the outstanding online forum for colon cancer patients, http://coloncancersupport.colonclub.com/, I have been inspired to add my own perspective. My husband and I both agreed, as do all of our friends who have made this daunting journey: how can anyone ever walk this path on their own? It can be done, I am sure, but I shudder to think how it might have been for John had I not been by his side on the many occasions when I stepped up to fill that role.
Does a cancer patient really need an advocate? When and why might having an advocate make a positive difference?
1. At the time of diagnosis: the patient is almost always in a state of shock and denial at the time of diagnosis. Whether the diagnosis comes as a result of routine tests, or after a catastrophic medical emergency, the reaction is the same: shock and disbelief. In such moments of dire emotional trauma, the patient’s own inner voices become so loud as to drown out the vast percentage of what is said by the doctor. Having a trusted loved one in the same room (and particularly if that loved one is actually writing down what the doctor is saying) makes it possible to return, again and again if necessary, to the facts of one’s situation. Those facts are very likely to be so completely overwhelming at the time of diagnosis that it is only by digesting them bit by bit that the patient is able to eventually come to some much fuller understanding.
In John’s case, he went from a state of astonishing vigor and strength to waking up in a hospital bed with 2 feet of his colon gone and a colostomy bag attached to the outside of his body, in a matter of less than 12 hours. Nothing in all of his previous life experience had prepared him for this moment. He needed and wanted to know how this medical disaster was going to affect the rest of his life, but his ability and willingness to hear the details was very limited. It became my job to collect as much information as I could and then to hold that information in abeyance until he was ready to hear it.
2. When the patient is hospitalized: after any surgery that involves complete sedation, there is a period of time in which the patient is groggy and unable to remember exactly what has happened. This is particularly true if the drug Versed is part of the anesthesia, as it actually erases the memory of the procedure. Typically, the surgeon will visit the patient after the surgery to report the relevant details– but often the patient remembers very little of what was actually said. Having a trusted loved one by the bedside is invaluable. What we discovered is that note-taking was mandatory, and that verbatim quotes from the doctor were revisited by both of us again and again in the months that followed.
There are so many other aspects of being in the hospital that become significantly more manageable when there is a patient advocate involved. Hospitals are busy places, nurses are so overloaded that attentive personal care is not the norm, and the new prominence of the “hospitalist” who mostly replaces the patient’s “regular” doctor makes the entire situation confusing even for the most dedicated patient advocate. The poor patient mostly has little idea of who is playing what role in his/her care.
A patient advocate has a vital function during hospital stays: he/she can make a big difference in their loved one’s care simply by devoting their energies to learning how the system works in their particular hospital. Learn the names of the nurses and nurses aides. Know their schedules and when the shift changes occur. Who are the most helpful/knowledgeable/competent nurses? Sometimes it pays to just endure the less helpful staff, particularly when you know that someone you trust will be replacing them in a few hours.
When it seems that the system is working less than efficiently and your loved one’s needs are not being met (failure to respond to requests for more pain medication, assistance with trips to the bathroom, alarms going off on the pain pump…), sometimes just taking a stance outside the door to their room is enough of a reminder to the staff. Occasionally I had to be more obvious, in which case standing patiently at the nurses’ station ensured that I was harder to ignore.
For those who are just beginning a stint as a patient advocate, you need to know that at most hospitals now, there are special in-hospital doctors known as hospitalists who oversee most of the day-to-day care. Although our experience with these specialists was mostly good, John decided that he wanted as much control as possible over who his hospitalist would be. Hospitalists are sort of shadowy, mostly invisible players at the hospital, at least from the patient’s point of view.
But we discovered that it was possible to find out which hospitalists were on duty on which days, and that by working with the other doctors on our team, could jiggle surgery schedules so as to ensure that John’s favored hospitalists would be assigned to his case. He even went so far as to schedule a pre-surgery meeting with a new hospitalist on his case, during which he detailed all of his preferences for how his post-surgery pain meds would be dispensed. Since the goal of this was simply to insure that he would be released at the earliest possible moment after surgery, the hospitalists we dealt with were uniformly delighted to accede to such eminently reasonable requests from a patient who obviously knew what worked best for his own particular situation.
Before each hospitalization, John made sure that the hospitalist who would be in charge of his care understood that I was his official advocate, and that this position as his spokesperson was backed up by a Living Will which gave me that power effective immediately. Having John confirm verbally that he had complete trust in my ability to make decisions for him really smoothed the path for all of my future communications with his doctors.
3. During chemotherapy: the patient is in a very vulnerable state during infusions, whether they are aware of this or not. Things can go wrong, sometimes quickly. Allergic reactions to chemo drugs are not uncommon; antidotes must be administered quickly to reverse a potentially life-threatening situation.
In my husband’s case, he did experience an allergic reaction to Irinotecan– after making it through his first two infusions with no incidents. When he mentioned to me that he felt “really weird”, a quick glance revealed a face that was cherry red and beads of sweat glistening on every exposed part of his body. The nurse had no way of seeing this from her station, as the infusion room set-up has the patients with their backs toward the nurses station. Who knows it might have taken a nurse to respond to John — if he couldn’t have called out with enough force to drown out the din of 12 televisions, if he had become too weak to call out at all, or not been clear enough to press his call button– I shudder to think… I jumped up, grabbed the nurse and in a flash, the antidote bag of Benadryl was administered and there was a dramatic return to normal for poor John. Nonetheless, it was a scary experience for both of us, one that no one should have to experience without a trusted loved one nearby. Afterwards, the nurses wanted to continue with the infusion, which was also scary. John did agree to continue, but only after we talked it over and were assured that he would be watched carefully to be sure that there was no further reaction.
Every cancer patient needs an advocate. I’m not just talking about sick, weak, elderly or meek patients– even a strong, super-intelligent, assertive patient who has previously been in charge of every aspect of his life can come to a point of feeling that they just cannot summon the energy to deal with even small issues, or feeling that they are lost in a chemo fog. Or, even more dire, they may face a medical emergency that renders them temporarily unable to speak for themselves at all. Our experience was that you can never know when that might happen; therefore, the best plan is for the advocate to be nearby and available at all times.
That said, it must be understood that this is a very delicate dance which requires a great deal of tact and discretion on the part of the advocate.
John (like all patients) felt that he had unwillingly surrendered a huge amount of the control that was so important to him, just by virtue of having become a colon cancer patient. So any further erosion of his control that appeared to be as a result of my actions had to be avoided at all costs– this became immediately apparent to me. Never the shrinking violet type, I had to learn the invaluable lesson of just keeping my mouth shut. I discovered that as along as I was fully occupied with my note-taking job, documenting everything said by his doctors, then being silent was just a natural part of the process. What took me a little longer to understand were the gigantic rewards we both would reap when I learned that, 90% of the time, my best move was to not offer information until it was requested by John. He had his own internal schedule regarding what he was ready to think about at any given moment, and that schedule could never be known by me. So when one of his doctors said something that was disturbing to me but apparently not heard or understood by John, my writing that comment down verbatim and saying nothing worked very well for both of us. Often I included a note to myself, like “John didn’t seem to hear” or “no reaction from John”, which was very helpful (at least to me!) when I reviewed my notes later, or when we were trying to decide how to proceed.
Slowly, I began to understand the immense value of supportive silence in our relationship. In those moments when John’s need to talk overcame his normal reticence about sharing his innermost thoughts, I realized that whenever I commented or made suggestions, the result was total silence. It was almost eerie, as though a switch had been flipped. When I made no comments at all and offered only the occasional sympathetic murmur, I learned things about John that were complete revelations, even after 40 years of marriage.
Not surprisingly, my remaining mostly silent seemed to be the mode preferred by John’s doctors. In the early stages of our relationship with our young liver surgeon, I was more or less forced into that mode by his pointed refusal to acknowledge me. Eventually, and delightfully for both of us, his initial wariness was replaced by genuine respect for my determined and unwavering advocacy on behalf of my beloved husband, and he was able to say to me, “John was a very lucky man to have you by his side.”