PRE-OPERATIVE COUNSELING IN LESS THAN IDEAL SITUATIONS
Jeff Searl, Ph.D., CCC-SLP
You would be hard pressed to find a speech-language pathologist (SLP) or an ENT surgeon who would argue against the need for pre-operative counseling of patients who are scheduled to undergo total laryngectomy. Discussions with SLP colleagues in various parts of the country suggest that in some locales nearly all of the patients scheduled for laryngectomy are seen for pre-operative counseling while in other locations, such appointments occur infrequently.
Reasons for not completing pre-operative counseling are varied: lack of value placed on such counseling by a particular SLP or surgeon, refusal by the patient, and logistical difficulties such as SLP schedule constraints, among others. Some of the reasons for failure to complete the counseling may be addressed in a positive manner that encourages completing a higher percentage of these sessions with patients and their families. For example, some ENT surgeons may simply overlook the potential value of having the patient meet with an SLP before surgery. In such cases, the SLP should attempt to point out to the ENT the benefits of such counseling and education. On the other hand, SLPs might have to be made aware of this need if their professional training neglected this point. This might occur at the urging of an ENT, contacts from local Nu-Voice clubs, SLPs working in the city or region, or continuing education events in which an SLP participates.
Sometimes the practical problems are more challenging to work around. As a group, SLPs are generally good-hearted people who want to help people through difficult times (total laryngectomy certainly qualifies as such and more for many people!) and while we have known SLPs who bent over backwards to make pre-operative counseling sessions happen in a timely fashion, a face-to-face meeting of SLP and patient sometimes just is not possible. Many times, patients live several hours away from the medical center making it difficult to schedule a return visit if scheduling did not permit the SLP to meet with them on the day of the ENT visit. Usually the problem is the short time frame between the ENT telling the patient that surgery is needed and the actual surgery, often as short as a few days. Even when schedules are tight, it might be possible to, at least, have the SLP meet with the patient and family for introductions, to give some very basic information regarding the surgery and its effects on speech, and to tell them when they will be seeing the SLP post-operatively and still in the hospital. We recognize that such a brief encounter is not the ideal. A number of folks have written fairly detailed descriptions of the purposes, structure, content, and overall approach to pre-operative counseling regarding laryngectomy. A brief visit is not enough to cover it all, particularly if the patient and family have many questions or have significant need for emotional support.
In instances where our usual 30-45 minute (or more, if necessary) face-to-face session cannot take place, we suggest some procedures that allow some of the information to be conveyed to the patient and family with an opportunity to answer questions as needed. Many SLPs have had to make other types of accommodations and we've borrowed some of what we do from our colleagues who find themselves in similar circumstances. Again, whenever possible we opt for the in-person meeting because it is, in our opinion, the best avenue for achieving all the goals of a pre-operative counseling session. The two broad goals we keep in mind are:
1) educate the patient and family regarding the surgery, its effects on voice and swallowing, post-surgery voice options, and sequence of events to come regarding surgery and rehabilitation, and
BRIEF IN-PERSON MEETING
If we only have time to introduce ourselves to a patient and their family we take a three step approach:
1) introduce ourselves and educate briefly,
Introduction and Brief Education Portion
We never just introduce ourselves. We steal as many minutes as we can to at least assure them that we will be working with them to get them communicating after the surgery. In the few minutes we have, we describe that their voice will be gone after surgery, but quickly assure them that we will work on re-establishing speech with a high rate of success to be expected. We sometimes have time to describe the surgery a bit (maybe with a picture to help) and mention the three main voice options (artificial larynx, esophageal speech, tracheo-esophageal speech). We most definitely tell them when they should expect to see us next post-operatively and what we will start to work on.
We know we run a few different risks in this type of brief encounter. We may heighten the patient's anxiety (or the family member's) if we are not careful, perhaps even if we are. The encounter needs to be positive, but still with a realistic presentation of what is to happen (i.e., loss of the voice, need for rehabilitation to restore voice). We acknowledge to the patient that we are only giving them some of the basic information right now because of the time constraint. And that we have some information for them to read over when they get home that can help them understand. In the next breath, we tell them that we want to call them after they've had a chance to look at the information so that we can answer questions.
We have simplified anatomical drawings that are labeled, showing the pre-operative and the post-operative situation (larynx removed, trachea turned to the neck, pharynx separated now from the airway). There are drawings available from a variety of textbooks or from companies that sell laryngectomy supplies (ATOS and INHEALTH both have good drawings); we sometimes use our own similar drawings. I can't think of a time that we would actually let the patient walk out the door from this encounter without at least orienting them to these pictures so that they can start to digest the information once they are reading on their own. We also include a sheet that briefly describes the three main voice options after laryngectomy: electrolarynx, esophageal speech, and tracheo-esophageal speech. If we know that they are to have a tracheo-esophageal puncture done at the time of the laryngectomy surgery, we still give them information about all three options. These are not detailed descriptions of any of the options, but rather an introduction to the possibilities and assurance that we will work with them to identify the best method for them.
In the literature, it has been commonly reported that patients and family want written materials educating them about the surgery, voice loss and rehabilitation. Often they might have had a hard time processing some of what was said to them because of the emotional-psychological stress of the situation.
Finally, we give them our card with contact information. We pick a day and time that is good for us to call the patient and we write this on the back of the card. We take the responsibility to make the phone call to the patient at whatever number they give us.
We have gone further than that with what we give them to take home, in some cases. We have filmed an SLP explaining the anatomical changes. The point that the voice will be gone after removing the larynx is made on several occasions and the reasons for this are given. The three alaryngeal speech options are also briefly described by the SLP with short audio and video clips demonstrating how the voice sounds for each option. The SLP in the video also describes the rehabilitation sequence that will follow the laryngectomy surgery starting with the first visit by the SLP while the patient is still in the hospital. Of course, these descriptions are fairly generic in nature and the typical sequence and outcomes are described. We certainly recognize that the follow-up post surgery might vary to some extent (as might the voice rehabilitation outcomes) depending on the particular patient's situation. On the video, the SLP frequently reminds the patient and any family members viewing the video to write down any questions that they want to ask the SLP in the follow-up phone call that will happen in the near future. We have the video available in several formats: VHS tape, on a CD that can be played in most home computers, or as a DVD that can be played on most DVD players.
We continue to have ideas about how to modify what we give them. For example, it may be helpful to actually give them a sheet of paper specifically laid out for them to record their questions that they want to cover with the SLP. Some of the descriptions that are given in the video need further editing or re-recording to clarify content. Overall, however, the verbal feedback from the patients and families about the usefulness of the information in this format has been positive. At some point, the whole package might be worthy of distribution and sharing with other colleagues who engage in laryngectomy rehabilitation although it feels fairly raw at this point with more refinement needed.
Follow-up Phone Call
As indicated above, during our initial encounter when introductions are made, we also set up a time for a follow-up phone call. Making this phone appointment within 1-2 days of the introductory meeting makes most sense to us. First, it is possible that there are only a few days until the surgery itself and we want to encourage the patient to review the home materials beforehand so that they have some idea of what is to come and have the opportunity to have questions answered. Second, we want to try to get the patient dealing with the information rather than only dealing with uncertainties and doubts that might spring from not understanding what is about to happen.
In the follow-up phone call we ask for the patient (rather than the spouse or other family members), we re-introduce ourselves and give them an opening to ask questions. Many do have specific questions which we try to answer. If they don't have questions, or don't have many, we probe them just a little bit with our own questions, such as: Do you understand how you'll be breathing after the surgery? Can you explain it to me? Do you know that your voice will be gone? Can you explain that to me? Do you understand a little bit about how you can get a voice back after surgery? And, so on. We encourage them to have the written materials in front of them as we might refer them to a specific item during the phone conversation. If they have the video, we might have them play or replay a certain part while we are on the phone and then see if they have any questions. It can be cumbersome, but usually it elicits concerns or questions that hadn't been raised previously by the patient.
We also ask to talk with the patient's spouse (or other family members). We want to answer their questions as well. In our experience, these are the folks who often have more concerns or questions — at least they seem more likely to share those with the SLP. Again, we might review some of the written material or the video with the spouse as we have them on the phone.
While this process has worked well for the handful of patients with whom it has been tried, there certainly are some problems. We still prefer face to face when we can do it because we get a chance to pick up on so much more. In the scenario described above, it is sometimes not always clear how much the patient has absorbed. We miss out on body language and facial expressions that could convey confusion about content. We certainly miss out on some non-verbal signs regarding anxiety and concerns that I think we are more sensitive to when the patient is sitting across from us. In general, the primary drawback is on the emotional support/counseling side of things. Besides not picking up on some of these concerns over the phone or during the brief introductory meeting, the SLP sometimes may not be able to convey as much support in the form of a comforting look or a light hand on the fore-arm when talking about difficult concerns. The procedure is better set-up for doing pre-operative education as opposed to counseling although we try to do both
No Time for Pre-operative Meeting
Discussions and Conclusions
We've had one enterprising patient who has asked to do a video-phone conference using his home computer. At the time we did not have a set-up to do a video conference from our side of it. However, that might be a very useful tool. Telemedicine types of approaches might work but it would be dependent on the availability of the right technical set-up for both the patient and the SLP. As such technologies become commonplace, we could see this as a real possibility in the not so distant future. Telemedicine approaches have been described in other areas of clinical practice within the field of speech-language pathology and the American Speech, Language, Hearing Association has put forth papers describing the role that telemedicine might have.
The type of encounter that is limited strictly to non-face-to-face contact is the least attractive option. We like to begin establishing some trust and connection with the patient and family prior to the surgery. The phone or video hook-ups are less conducive to this than sitting next to the patient. There are however, some benefits to the approaches described above. First of all, some information gets conveyed to the patient rather than none. Patients and families have expressed that these contacts have been helpful. From the SLP side, we can vouch for the fact that it makes the first post-operative visit more productive. The patients and family have some knowledge base to work from and everyone knows each other to some extent. An additional advantage to this approach is that patients may have more time to review information and clarify their questions and concerns. Many times in a hospital/clinic setting, the pre-operative counseling might happen immediately after the ENT has just confirmed for the patient that they need a total laryngectomy. This may not be an ideal time for the patient or family to process additional information that the SLP will provide in a pre-operative meeting. A quick introduction with some information provided may provide a point of contact for the patient. Then they can review the materials given to them at home where they might be more comfortable and have more time. Of course they might also get themselves worked up or perhaps confused, so we have to be careful to set them up, so that doesn't happen, by letting them know we will follow-up by phone to clarify information for them.
We are continuing to think about what we are doing with pre-operative counseling because we see it as important. We write clinical notes for any pre-operative contacts that we have with patients whether they are brief in-person visits or phone calls. At the moment we do not bill for the time we spend in these endeavors. If the telemedicine component becomes more of a reality in the future, we could envision this type of pre-operative counseling being taken to a different level. However, we do not envision, nor would we advocate, any such remote contacts replacing the face-to-face pre-operative session.
The Easy Button
Are you like the elf carving a digital camera out of wood, doing everything the old way and hoping you'll get something newer and better? While the commercial features an earnest young man convincing the boss to use the "easy button", why would we want one?
My old college sociology textbook defines culture as "the totality of learned, socially transmitted behavior. It includes the ideas, values and customs [of] groups of people". It also identifies a number of "cultural universals, aspects of shared, learned behavior developed by societies to meet basic human needs".
Sub-Culture of the Deaf
What got me thinking about all this was a recent program on PBS called The Sound and the Fury (check your local station for airings- it is moving, troubling and powerful and, obviously, thought-provoking). It is a documentary about the controversy within the Deaf Community over cochlear implants. As I am sure most of you know, cochlear implants are the latest technological/surgical procedure to allow severely hearing-impaired and deaf persons to hear. It has had some remarkable successes, but it does not work for everyone. At this time, it appears that for children who are born deaf, the sooner the procedure is done, the more complete the success. We are talking about babies- less than a year old; the reason being that so much language development occurs in the very early years.
Sub-Culture of the Mute
But I am not deaf, I am mute. I rely on a technological device and its attendant batteries, re-chargers, special seals and screens to talk aloud. I am not a candidate for the latest surgical/technological procedure. I speak the language of my society but in a way that some find difficult to understand. I sympathize with the WW member who recently wrote of a couple of people who hung up on her because they couldn't understand her (although I am appalled and angered by their rudeness). Nevertheless, I understand. I was so surprised when I joked with the Cable TV lady on the phone the other day and she laughed. My jokes are NOT that bad - it's just really hard to get the right inflection with a Servox, especially over the telephone.
What is remarkable is that ASL reproduces those subtleties and nuances so elegantly and effectively that even the hearing community can learn to appreciate the language. I do not see that happening for us, nor do I wish it. But I wonder about the power of the human experience that Beethoven could write some of the most extraordinarily moving music of all time when he was so profoundly deaf he couldn't hear it performed.
Recently we received a letter that made us sit up and take notice. It is not a new subject to many of you - similar stories appear from time to time on our list. However we felt that this woman's brave and unflinching account of what she and her husband endured at the hands of dangerously misinformed (albeit well meaning) medical personnel warranted your attention. Please read it - for your own sake as well as that of your loved ones. Then, if you have not done so already, make sure that emergency response personnel in your area are aware of your unique situation. At the end of her letter is one example of how this might be done. If you make only one New Year's resolution this year, make it this one - to educate the emergency response teams in your area to the special concerns of "neck-breathers". Sharell's letter is not an easy read, but it is an important one and one we thank her for taking the time to send it to us in her time of grief. (Donna McGary, copy editor)
from Sharell Babin
To my WebWhispers friends,
I was very surprised at many things that happened (in the medical community) after my husband's last surgery on October 24. He had been told he had cancer on the back of his tongue. The actual surgery showed it was also on each carotid artery as well as the esophagus.
He had a lymph node removed from his right side; therefore, no further blood draws or blood pressure readings should have been taken from his right arm. I knew that. HOWEVER, the people who were taking care of him in ICU took blood and did blood pressure readings from his right arm and he ended up with Lymphedema. Nothing was being done to reverse the situation until I finally connected with "someone who cared" enough to do their job. It took 5 days to regain the feeling in his hand so he could hold his Servox and once again be able to speak. This never should have happened. I never left the hospital after my husband left ICU and was in a room of his own.
Even after regaining the use of his arm, people would appear at different times and try to take blood pressure readings or blood draws from his right arm. I immediately stopped that from happening. And there was a red notification at the head of his bed that stated no draws from his right arm. These nursing assistants never bothered to look up to read the signs. I told them they would have to take the blood pressure reading from the calf of his leg (he had a PICC line in his other arm). Some of these nursing assistants had no idea how to do that. I have never had any medical training. I just learned these things from observing the RNs who knew what to do and, thankfully, how to do their jobs.
The surgeon was unable to get the cancer and after the surgery did inform us that my husband was terminal. However, I do not feel that should have lessened his "quality of care" in the hospital.
My husband was put on morphine, which, of course, made the colon not do what it should do, and therefore made the bowel system shut down. He gained 39 pounds while lying in bed with no food.
My husband had a feeding tube. When first giving him food through the tube, it backed up through his stoma. So another tube had to be inserted inside the original tube and sent to his lower bowel system. So the feedings were stopped for about three days. During that time he was still receiving moisture so he wouldn't dehydrate, but that backed up and gave him what was called ileus. Again, it took connecting with the right doctors (who cared enough to provide healing orders) to get the right prescriptions to make the colon and bowel system work properly again and get rid of the ileus. The general practitioner overseeing my husband, was going to have him sent by stretcher to a nursing home where he could be "kept comfortable through drugs" until his passing.
I protested, and finally my husband was able to get on his feet and walk again and build up enough strength to come home to live out the time he had left. Yes, he walked from the entrance of the hospital to our waiting car on his own. That was a glorious moment. He did have eleven days at home to enjoy himself feeding the birds and squirrels, watching the deer (a joy for him) and driving the car right up to the very last day.
On his final evening my husband's carotid artery ruptured (it had a cancerous tumor wrapped around it) and he died as a result of that. It actually burst and my husband bled to death, but I probably shouldn't be that graphic in an article. I did that thing that most spouses would do. I called the doctor's office first, then called 911. The doctor's office called back while I was waiting for 911 to arrive. The doctor told me to put my finger in my husband's stoma and press firmly on the artery where the blood was coming from. I'm assuming the doctor just wanted to keep me busy??? Since I later learned there is nothing that can save a life once a carotid artery bursts - not even if you're in a hospital when it happens.
Anyway - 911 did arrive and they took over. The doctor was on a speaker phone in case they had any questions for him. The emergency people placed my husband in a "carrying chair" and took him outside to a stretcher and then placed him in the ambulance. All of this, I felt, was as it should be. They let me ride along in the front seat. HOWEVER, within a block of our home, three deer crossed the road and the ambulance driver had to hit the brake to avoid the deer. In my mind I knew my husband had passed away and this was a sign his soul had gone on to heaven. He loved watching the deer in our neighborhood and they were there "one more time" for him.
After the deer crossed the road I turned around to see what was going on with my husband. I was shocked to see him laying there with a mask over his mouth and a bag in the hands of one of the crew pressing (squeezing - whatever they do with the bag to create oxygen being passed into a person) to get oxygen into my husband's system. I calmly told them that he only received air through his stoma, that oxygen to the mouth is useless. They then informed me they had placed a plug in his stoma and therefore were giving him oxygen by mouth. If he weren't already dead, they would have killed him by doing this.
I am writing to you in the hope that somehow this can be turned into an article for the newsletter. I don't want to scare anyone, but I do want laryngectomees and their significant others to know how important it is to have an advocate, both in the hospital and in life in general, to speak up for them when they cannot do so themselves.
AND my cause now in life is to see how many 911 groups I can meet with to let them know that placing oxygen on a laryngectomee's mouth does absolutely no good and that plugging up a stoma would kill a laryngectomee who might otherwise survive some situations.
I now know there was nothing anyone could do to help my husband, but the treatment he received throughout the course of this last surgery and hospital stay, in addition to the plugging of his stoma, scares me. The lack of education by medical professionals in the care of a laryngectomee certainly exists and makes it essential to have an advocate while receiving medical procedures.
I was fortunate to have been married to my husband for 44 years, and was in no way ready for him to meet our Maker, but we have no choices in that matter. However, educating medical personnel is within our reach, if only I can figure out how to go about this in a positive way.
Please let me know if any of this can be used in a newsletter article to point out the need for someone to be with laryngectomees when they cannot speak for themselves.
Sincerely, Sharell Babin, Maplewood, Minnesota
TAKE CARE OF YOUR "911" NEEDS
After reading several suggestions about contacting the local "911" dispatcher regarding my "condition" as a laryngectomee, I recently decided to do so. I felt this especially important, given that I, like many laryngectomees, live alone, AND, it occurred to me that perhaps a situation could arise wherein I would need "911" assistance, but would be unable, for some reason, to actually SPEAK.
House Fires and You
Most house fires occur between the hours of 11 PM and 6 AM
Because the majority of house fires occur when most families are asleep and understandably unable to think or act clearly it is important to have a practiced escape plan that will quickly enable you to get out of the house and away from the fire. Unless there is a continued risk for loss of human life do not reenter any burning structure. Insurance will replace many things but it cannot replace you. The following steps are guidelines. Only you know what is best for your family.
• Call for a free home inspection from your local fire department to determine if there are any issues which need to be addressed. Being preventative and proactive can be a good thing.
• Fire extinguishers may make a difference when a small fire is discovered. However, remember that you are not a trained firefighter. A small fire may turn into a much bigger fire despite the use of a fire extinguisher or the using the wrong type of fire extinguisher. Every second counts towards getting out of the house safely.
• As a laryngectomee, consider how to effectively communicate an emergency of any type, not only to authorities but also to others in the house. Know what telephone number to call, if other than 911, for fire, police or ambulance service. If possible, use a speed dial button for those numbers. Depending upon your preferred method of voicing, if you are alone make sure that you can communicate with an emergency operator or other emergency personnel. If your electro-larynx is in another room it is the wrong time to try to remember where you left it. If a TEP user, an electro-larynx should also be within reach if case your prosthesis is clogged. Having an electronic whistle or sport/boating compressed air horn nearby is an excellent method to notify others in the house to an emergency.
• A flashlight at your bedside is also invaluable if smoke is heavy and power has been lost. Your house may become more of a maze when filled with smoke and may create high anxiety on your part.
• Due to our physiology we are more susceptible to smoke inhalation. Consider wrapping a bandana or small towel, wet if possible, around your neck to keep smoke from entering your stoma. This should be an option especially if immediate evacuation of the house is not possible. Remember to move lower to the floor to get under the smoke and check closed doors for extreme heat before opening them.
• Devise an escape route for everyone in the family. Install escape ladders in the upper floors of multi-level homes. Give extra consideration for alternative plans regarding elderly or wheelchair bound relatives.
An escape ladder is easy to install and use. Simply secure it to a window sill, release the ladder to the ground or lower porch/deck and climb down slowly to minimize the risk of injury from a fall. This should be practiced as well. If a fire were to occur that is not the time to identify a fear of heights or falling.
• Have an agreed upon meeting place where the entire family will meet after escaping the house: a neighbor's home or mailbox for example.
• Practice and time your escape. All family members should be able to escape in 2-1/2 minutes or less.
Kitchen - Avoid placing the smoke detector too close to the oven or a ceiling fan where it can create false readings and set off the alarm.
Be sure to select the detector that includes features you desire and/or fits your family budget. Test smoke detectors regularly and check batteries when clocks are adjusted semi-annually. On a recent NBC Dateline program dramatic video was presented which showed children and some adults not waking up to the sounds of a smoke detector alarm. It also demonstrated the seriousness of knowing how to get out of your house as soon as possible under adverse conditions.
Officer Scott Bachman
Above courtesy of Mike Reed
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