Anatomical Care Plans: Module

CE / CME

Planning Effective and Affirming Preventive Care Plans Consistent With a Patient’s Current Anatomical Structure

Pharmacists: 0.75 contact hour (0.075 CEUs)

Physicians: Maximum of 0.75 AMA PRA Category 1 Credit

Nurses: 0.75 Nursing contact hour

Released: October 04, 2022

Expiration: October 03, 2023

Activity

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Introduction

In this module, Lauren Radziejewski, DNP, APRN, a nurse practitioner specialist with expertise in the care of transgender individuals, provides expert examples and strategies for developing a patient care plan that is inclusive, patient empowering, and medically accurate by using an organ-based approach and shared decision-making (SDM).

The key points discussed in this module are illustrated with thumbnails from an accompanying downloadable PowerPoint slideset that can be found here or downloaded by clicking any of the slide thumbnails in this module alongside the expert commentary.

Clinical Care Options plans to measure the educational impact of this activity. One question will be asked twice: once at the beginning of the activity and then once again after the discussion that informs the best choice. Your responses will be aggregated for analysis, and your specific responses will not be shared.

Before continuing with this educational activity, please take a moment to answer the following questions.

In your practice, do you have experience caring for transgender patients?

A 66-year-old transgender woman has been taking feminizing hormone therapy for 8 years and has undergone vaginoplasty.

You should discuss guideline-based screening with this patient for which of the following organs?
Overview: Optimizing Care for Transgender Patients

Creating a comfortable environment for transgender and nonbinary patients is quite straightforward, but it may require healthcare professionals (HCPs) to evaluate and sometimes alter their daily practices to better align with the patient’s needs and goals. As with historically marginalized populations, one of the critical components lies in the ability of the HCP and their staff to create a safe and affirming environment that is comfortable for the patient. Although I believe that most HCPs and institutions take care to avoid explicit bias—biases where individuals are aware of their attitudes and prejudices toward certain groups, such as racism or other forms of marginalization—they sometimes do not pay enough attention to the effects of implicit biases—biases that are unconscious, such as historic marginalization, aggregate trauma, and microaggressions—and the way in which these may come up in the course of clinical care. However, by understanding these dynamics and being introspective, it is possible for all HCPs to build an affirming and welcoming therapeutic relationship with their patients regardless of their gender identity.

Gender Identity Policy Tallies by State

It’s essential that we consider the concept of marginalization and what transgender people experience in the world when we are delivering clinical care. Many HCPs are aware that transgender and nonbinary patients continue to be marginalized, ridiculed, attacked, and bullied at the hands of some individuals and our society. You only need to look at the rash of new antitransgender legislation in some states to understand that this is the case.1 Some states have chosen to ban an HCP’s ability to treat transgender people and have criminalized that care. HCPs must have an understanding of the corrosive effects that these types of things have on the mental and physical health of transgender and nonbinary patients. 

US Transgender Survey: Injustice at Every Turn

An initial survey study of 6450 transgender‑identified people, titled “Injustice at Every Turn,” documented several remarkable and eye‑opening findings in areas related to healthcare experiences, navigating the world, and so forth. In that report, 50% of transgender individuals reported being harassed in the workplace, and 26% said they had lost a job because they were gender diverse.2 In a more recent 2016 survey of 27,715 individuals who identified as transgender, trans, genderqueer, nonbinary, and other identities on the transgender and gender-nonconforming identity spectrum, 30% reported being fired, denied a promotion, or mistreated in the workplace due to their gender identity.3 It is worth noting here that a majority of states in the United States do not have explicit protections against doing this, and it is perfectly legal to fire somebody based on them being transgender.

In the 2016 survey, 1 in 10 transgender people experienced violence from a family member because of their gender identity, and nearly one half of all respondents reported being sexually assaulted at some point in their life.3 Sadly, 40% of transgender-identified people reported attempting suicide compared with approximately 5% of the general population—that is more than one third of all transgender people attempting suicide.3 This statistic is not due to higher rates of mental illness, but rather a reaction or response to what the world throws at them.

US Transgender Survey: Healthcare Setting

It is important to know that one third of transgender people reported at least 1 negative experience over the previous year in the healthcare setting.3 This includes harsh or abusive treatment at the hands of HCPs, ranging from outright dismissal of care, statements that they won’t care for the patient with regard to their gender identity, and refusal to use correct pronouns even after being asked. Imagine what it must be like for a patient to go to their doctor seeking care and have to be confronted with that kind of bias. 

One anecdotal situation that stands out in my mind is when a patient whom I was seeing for gender care went to the emergency room at a well-known tertiary-care academic medical center for a broken arm. While she was in the common area of the emergency room with the curtains closed, she overheard a conversation between an attending, resident, and nurse in which they argued about which genitalia she had. This led to them taking bets, including exchanging money. One must assume there was some intention to actually figure out her genitalia, which would have been an incredibly immoral thing to do and a medical ethics breach. We found out about this because one very brave medical student overheard this, intervened, and reported it.

Imagine what that patient brings to subsequent medical visits from that single encounter with HCPs. Will she be open with you? How will she react when you phrase things a certain way? Many, if not most, of your transgender and nonbinary patients likely carry some version of these experiences with them. When they are sitting in your waiting room or exam room, they have this history with them, and acknowledging that will help you to move forward.

Building a Preventive Care Plan: Overview

Let’s discuss how to build preventive care plans in ways that are nontriggering and affirming to transgender patients and still accomplish what we, as HCPs, need to do.

The overarching principles come down to a few key take-home points, the first of which is that we focus on organs.4 Organs belong to people. Lots of different people have lots of different types of organs. We know that normal variations occur, and when we discuss preventive care, we base those discussions on the organs people have. The second key principle is to try to detach the person from any gendered terminology for their organs or other triggering things, using verbiage such as “We’re trying to prevent this organ from getting cancer.”

Finally, at the end of the day, HCPs are very familiar with how to develop a preventive care plan and thus already possess many of the skills in their general practice necessary for transgender care—they just need to reframe their perspective. As you approach transgender care, anchor yourself to the things that we’ve all learned and already become so comfortable with—this will make it feel less daunting and intimidating. Modifications you make for the care of transgender people should be applicable to any patient you see.

I’ve frequently encountered that people are afraid of saying the wrong thing, triggering the patient, or pushing the patient away. As HCPs, we want to do no harm. This fear can cause us to freeze up and not say anything. Anchoring yourself to the points that you already know, such as the organ system–based inventory, will help. 

Preventive Care Plans: The Basics

The approach to preventive care for transgender patients includes the basic elements with which you are already familiar.4 Medical history and social history are cornerstones. Family health history is extremely important. Risk stratification is another critical piece because sometimes you will elect not to pursue certain screenings in a transgender patient based on their individual risk. Finally, SDM may be the most critical component needed.4,5

Empowering Transgender Patients Through SDM

In an ideal world, we would practice SDM with all of our patients, but the reality is that in some patients we do more or less because in some patients there’s room for more or less.5 For example, many of us who have had experience caring for older individuals will recognize that they tend to accept and even sometimes expect a more directive healthcare approach that includes definitive recommendations. However, when you’re working with any marginalized population, SDM is absolutely crucial.5 Even when things seem to be obvious or the patient has previously expressed agreement to a certain thing, you still should touch base and confirm with the patient.

When you think about marginalization, what is it really? What’s really happening when somebody doesn’t honor one’s gender pronouns, or an HCP refuses to provide the most basic care to a transgender person? That patient’s power and ability to advocate for themselves is threatened and taken from them. The ability that we all should have to say, “Here’s my name, here’s how I’d like to be called, here’s how I exist in the world, please respect that” has been stolen. Most people are afforded that right without any thought—and yet transgender people so often are not. Therefore, you do need to denature some of the harmful effects that patients might be coming into the exam room with by assertively, preemptively, and visibly giving them their control back. 

Focus on Organ Systems

For many preventive care strategies, there are not explicitly written guidelines for transgender people. For example, there may be disagreement about which reference ranges to use, particularly if the patient has undergone extensive hormone treatment. In the absence of explicit clinical evidence, you should focus on the organ systems.4 For example, if the person has breast tissue, you look at which guidelines are available for people with breast tissue; by and large, those will be on cisgendered women, but it will apply.6 If your patient is a person assigned male sex at birth but has breast tissue, you will apply the guidelines for people who have breasts. If your patient has a prostate, same thing. We would love to have specific guidelines available, and hopefully in the future we will have more population‑specific evidence to guide us.

There also will be times when you will need to use clinical judgment, either because doing the screening will be triggering—and that’s that shared decision piece—or because, in your judgment, the guideline doesn’t make sense with the practicalities for a particular individual. For instance, how much breast tissue is left after a person has undergone chest masculinization? It’s not a radical mastectomy. Rather, gender-affirming mastectomy will be focused on achieving a nice aesthetic and not going down to the chest wall to remove all breast tissue. Does that person still need mammograms? Likely not, but it is going to depend on the specific patient.

Taking a Medical History From a Transgender Patient

Medical and social histories are cornerstones of care. You’re going to be digging back into areas that may feel uncomfortable for your patient, so it’s important to acknowledge that up front. Most patients, at times, will feel uncomfortable giving some of their history, particularly if it’s highly traumatic. Give your patient permission to take breaks. It’s useful to say up front: “I’d like to talk to you about your medical history and some of your personal habits. I know that sometimes it can be hard to talk about some of these things and particularly to think about things that may have happened in the past. If you ever want to take a little extra time or there are things you just don’t want to talk about right now, that’s totally fine.” Again, give that power back to the patient. You can come back to areas that you weren’t able to fill in at a later date.

Overall, you are going to screen your patients based on the organs they possess without regard for length or type of hormonal treatments and collect a medical history in the usual fashion, paying special regard to avoid overly gendered terminology. Gendered terminology can be many things. For instance, it is quite common for transgender men to have birthed children, but discussing this may be difficult. They may be very proud of their child, but they identify as their child’s father. When taking the medical history, you might consider not asking, “How many pregnancies have you had?” Although “pregnancies” is not overly gendered, in our society when you say “pregnant,” you generally think about a woman. I tend to keep it very factual and say, “Do you have any children?” If the patient says “yes,” I follow up with, “Are those children genetically similar to you?” If the patient says “yes,” then I would ask, “Are those children you gave birth to?” This allows the terminology to be more technical and detached from their sex at birth. 

“Pap smear” is another term that can be triggering. I usually say: “People who have cervixes should be screened for cervical cancer. Have you been screened?” Because even though “Pap smear” itself is not a gendered term, it is a word often associated with women.

When discussing something that may be triggering, it’s okay to say, “I realize this could be a little triggering for you” when you are unsure of the potential impact of what you are about to say. Another approach might be to say: “This is an area I’d like to talk about. I realize it could make you feel uncomfortable, so we could talk about it later, but here’s why it’s important.” Of importance, don’t let your fear or uncertainty keep you from asking necessary questions.

As a general rule, if you can mirror patient terminology, you should. If the patient says, “I have an itch down there” or “I have some discharge down there,” it’s okay to say something like, “When did this discharge down there occur?” Then you can elicit more detail while detaching it as much as possible from the patient. For example, you may follow up with, “When you say ‘down there’ and you mention the discharge, are you speaking about the vagina?” Initially, mirroring patient language followed by more medically precise questions can be a very useful tool. 

Taking a Social History

Because of its relation to increased risk, it’s important to be complete when taking a social history, particularly as it relates to things like drug and alcohol abuse, sexual violence, and unwanted sexual contacts. Although it may feel uncomfortable to talk about these subjects, you would be doing a great disservice to your patient by not having those discussions. 

As you approach a patient’s social history, you may have to do it in more than 1 sitting, which is perfectly fine. I always give an opt‑out clause, especially when I’m addressing more difficult topics. For example, with someone who has experienced sexual violence, I will say: “It’s really horrible, but unfortunately many transgender women have experienced sexual violence. I’d like to talk to you about your history with regard to this. If it’s something that you want a little bit more time to think about or to talk about later, we can do that, but these are the reasons I want to talk to you about these things.” I frequently will build their history over 2 or 3 sessions, but I recognize that that is not always possible. If you’re in an urgent care setting, for example, you get what you can get, and that’s the best you can do. However, if you do have the luxury of taking your time and building rapport with the patient, it works remarkably well. The patient rarely forgets. If you bring it up the next time and say, “This is on my list of things that I think are important to talk about,” they’ll remember.

Taking a Family History

Taking a family history is important to patient care, as we all know, and it’s equally important in the transgender population.4 Sadly, it is very common for transgender, nonbinary, and nonconforming individuals to be estranged from their genetic family, and it is important to remember that this may be a triggering conversation with the potential to elicit a range of emotions, including anger, shutting down, sadness, or distress.3 If we’ve just gone through a rough medical and social history, I will save the family history for another time.

In certain populations within the transgender community, it’s very common to call people who are not their genetic relatives their sister, aunty, mother, or some other such name. Occasionally, I’ve collected a family history, then found out much later that they were not genetically related. Most patients will recognize that you’re asking about the genetic family history, but not always. If they don’t have a very good understanding of genetics, they may think you’re asking for information about the people they surround themselves with. It is worth double checking that the patient realizes you are discussing their genetic family vs their family of choice. If it is their family of choice, that is more information for your social history.

Risk Stratification

Once you have collected your patient’s family, medical, and social history, it is time to create your care plan for the patient and to discuss how to proceed with preventive maintenance. You have taken an organ inventory and navigated difficult conversations, and your patient is feeling safe with you. The next step is to take some actions. If the questions weren’t invasive enough, now you’re going to actually be physically invasive in many respects. Remember, things like pelvic exams will be very triggering for many patients, so, as we approach this, additional conversations around risk stratification and alternative options may need to happen.

Breast Cancer Screening

There are limited data on breast cancer rates in people assigned male sex at birth who identify as female and have been receiving long-term hormonal therapy. The rates are higher than for cisgender men but not as high as cisgender women.7 I recommend basing your decisions on the organs the patient has. Transgender women receiving hormone therapy will have breast tissue that should be screened for cancer per guideline recommendations based on the patient’s demographic.6

Just as you would with any patient, talk to your patient with breast tissue about why it’s important to screen for breast cancer, sharing that it’s very treatable if it’s caught in the early stages. There may be some educational needs for transgender women because, unlike cisgender women who may have grown up with some sense of what the test involves (for example, their mom may have mentioned “getting her breasts squished”), some transgender women may not have inherent or social knowledge about mammograms. 

A mammogram is a gendered test that can be affirming for transgender women and triggering for transgender men who still have breast tissue. I recommend saying “screening of breast tissue” rather than “mammogram.” When I discuss breast cancer screening, I say: “People with breasts should have screening for breast cancer after the age of insert the guideline-recommended age.6 Therefore, I think it’s important to consider this in your case.” From there, I gauge how comfortable the patient is. If they seem to have a high degree of discomfort, then we engage in a conversation about the risks and benefits, considering risk factors such as family history. It might be reasonable to put it off a year or two or change the frequency. It’s important to make sure the patient understands the risks and is willing to accept them to avoid the emotional harm of going through the procedure.

Cervical Cancer Screening

Cervical cancer screening can be highly triggering for many people who have cervixes. In addition, there is the unfortunate increased risk of sexual assault for transgender people, which can make cervical cancer screening all the more difficult.3 I discuss the need, risks, and benefits of screening cervixes with all of my patients who have a cervix and how often guidelines recommend it be done. For transgender patients, I often will offer to do the screening on a separate visit to give them a chance to prepare. If we go this route, I always suggest that the screening be the focus of the visit so we’re not trying to do other things in that visit.

I also have offered to transgender patients that someone else do the exam because some of them may be worried about how you will perceive them if you see that they have a vagina when they identify as male. They may be fearful that you will perceive them differently or treat them differently because people in their lives may have negated their masculinity when they learned their history. It’s not uncommon at all, nor is it unreasonable, for the patient to be fearful of that, so I offer it. I say, “Would you feel more comfortable with a different provider?” But many of my patients end up saying, “No, I really just want you to do the exam.”

There are also patients who simply won’t tolerate screening. When this happens, it’s back to the discussion of risks vs benefits. In those patients, a third option is to offer cervical self-sampling using a brush-based device for human papillomavirus (HPV) only.7,8 I’ve had many patients opt for that, but again, it’s an SDM process, and patients must understand the risks and benefits of self-sampling vs a full exam.

Prostate Cancer Screening

Prostate cancer screening can be a bit tricky in transgender women because people who have been receiving long‑term testosterone-suppressive therapy often have a prostate that’s not palpable, prostate screening guidelines are not straightforward, and there have been no long-term studies evaluating the impact of long-term suppressive therapy on the risk of prostate cancer in transgender women.

My approach is to screen the organ the patient has based on current clinical guidelines and SDM with the patient.9,10 In my opinion, it’s very reasonable in patients, particularly those in their 50s and 60s who started hormones or testosterone blocking later in life, to get regular prostate-specific antigen tests.

To help us measure the educational impact of this activity, please provide an answer to the following question, which was presented to you in the pre-education section of the activity. As a reminder, your responses will be aggregated for analysis, and your specific responses will not be shared.

A 66-year-old transgender woman has been taking feminizing hormone therapy for 8 years and has undergone vaginoplasty.

You should discuss guideline-based screening with this patient for which of the following organs?
Surgical Anatomy

Overall, the guiding principle in care for transgender patients is that if there is screenable anatomy that was present at birth, screening should be considered.

It’s important to note that the prostate is not removed in vaginoplasty.4 If somebody has a vaginoplasty, do they need Pap smears? This is going to be expert opinion, but the answer is probably no, because they don’t have a cervix to screen for cervical cancer. However, they can contract HPV, which can be transferred to another sexual partner, but we generally do not screen for that in the absence of a risk of cervical cancer. Transgender women do get yeast infections and bacterial vaginosis.

For transgender men who get phalloplasty, it is common to develop a urethral stricture, and that should be asked about during visits.11

Discussing Sexual Practices

When discussing someone’s actual sexual practices, it is important to avoid gendered stereotypes and concepts. We don’t want to ask “Do you have sex with men or women?” when what we are trying to understand is if the patient has had contact with penises, vaginas, or both. I instead use an organ approach with this question and follow up with asking where those organs touch. The question may elicit a chuckle, but I’ve had patients say, “Thank you for asking it that way, because my partner is a trans guy.” It saves them from having to describe it to you in some way that doesn’t fit. I recommend practicing the question in this way, as it takes a little getting used to. You should document the response in the medical chart using the same descriptions and avoiding gendered concepts, because not only do patients often have wide‑ranging access to their own medical chart, but this also encourages other HCPs to carry forward that language.

Finally, you should not assume the type of intercourse the patient is having based on their gender identity. Do not make assumptions about what a person may be doing with the anatomy they have. For example, it is not unusual for people to feel very dysphoric about their penis and express a desire to have vaginoplasty and yet still use that penis actively for insertive sex. Transgender men, in my clinical experience, very frequently continue to have some form of receptive vaginal sex. Thus, if your transgender patient retains a piece of anatomy inconsistent with their gender identity, don’t assume they aren’t using it for sex unless they tell you otherwise. 

HIV Infection Prevention and Screening

Transgender women are at a uniquely high risk for HIV infection.¹² In New York City, for example, the highest rate of new HIV infections in the city is among transgender women, particularly transgender women of color. The risk of HIV and sexually transmitted disease screening should be discussed at every visit. As you make your care plan with the patient, pre-exposure prophylaxis (PrEP) should be discussed if the person is at personally high risk. For patients who have previously declined PrEP, I will say: “I’m going to talk about this again, if it's okay with you, just to see if you’ve changed your mind. If you haven’t, also know that postexposure prophylaxis is available. If you were ever to have a potential exposure, you have 72 hours—seek it out, please.” 

Unfortunately, we do not have good data on the efficacy of PrEP in the surgical vagina. Although PrEP works well for anuses, it does not work as well in cisgender women’s vaginas and likely works less well in transgender women’s vaginas. This should be discussed with patients after vaginoplasty, as they may not realize that the PrEP may not cover them well for vaginal intercourse.

Fertility Planning Before Hormone Treatment: Special Considerations

The best time to discuss fertility planning with your transgender patients is before they start hormonal therapy.13,14 You should have discussions about whether they want to have genetically similar children because hormonal therapies may permanently change their ability to do so.

For a person assigned male sex at birth, that would mean banking sperm because the number and viability of sperm is best when no hormonal treatment has been initiated. Sperm production is mostly absent during long‑term hormonal therapy, and people often cease ejaculation entirely. Some data suggest that if hormones or testosterone blockers are withheld for a period of time (approximately 3 months), some ability to produce viable sperm does return. In my experience, it seems to be proportional to the length of time receiving hormones, but that is just anecdotal experience.

In addition, people who have been receiving long‑term testosterone-suppressive hormones may lose the ability to have a comfortable erection, which is usually permanent.4 They essentially develop a form of Peyronie disease, so even if they were potentially capable of producing viable sperm, the act of masturbating might be too uncomfortable for them to engage in sufficiently for a good sample. Patients should be counseled early regarding options and availability. Unfortunately, insurance does not cover the initial collection, analysis, and storage, which can be expensive. There are some online support options that can help reduce the cost a bit.

For people who are assigned female sex at birth, egg harvesting and cryopreservation should be discussed. When people stop testosterone treatment, they can regain the ability to become pregnant and have a viable pregnancy. I have seen people who have been extremely masculine stop testosterone, become pregnant, and carry a child to term. However, in the absence of robust data, it is wise to counsel a patient about the potential harm to fertility. The mechanical aspects may be harmed because long-term testosterone therapy can cause significant vaginal atrophy, possibly even atresia of the introitus, which might make fertilization difficult.

Pregnancy

Transgender people assigned female sex at birth, as mentioned, can become pregnant. There may be additional risks of complications during pregnancy when receiving testosterone, such as ectopic pregnancy.15

When patients go for many different types of tests, if they have a uterus present, they often are required to get a pregnancy test. This can be highly triggering for transgender men, and sometimes it is arbitrary and just not necessary. When these instances come up, if perhaps the patient has presented me with some kind of form before going in for a procedure, and I know that the patient has not been exposed to sperm, I will just revisit that with them by saying: “Have you ever been exposed to sperm? Have you been exposed to sperm in the last year?” If the answer is no, they absolutely have never been exposed to sperm and you can trust that patient, then you can simply cross that out and say “Not applicable” and move on. You will have to use your own clinical judgment. I’ve had patients who say, “I literally have never been exposed to sperm, and I’ve never seen a penis in person”—that’s not a person I’m going to make have a pregnancy test.

Finally, regarding pregnancy, some transgender women will ask to be put on birth control, and you would need to explain that it is not required.

Patient-Centered Care

 
I keep looping in SDM because it is the key component to success in transgender healthcare. It is critical that we meet patients where they are.5 We have discussed why SDM is uniquely important to this particular population: Society, in general, has essentially stolen the autonomy of transgender individuals in terms of defining their own gender and anatomy, and it is important for us to give that power back to the patient, as well as for us to build our care plans using a harm reduction lens.

Very frequently, as HCPs, we build the care plan and never talk about it with the patient—but in keeping with giving power back to our transgender patients, it is an important step in care. You could say: “Here’s what I’ve put together for you as a way to optimize your health. We talked about this, and these are the preventive measures you mentioned you’d be comfortable doing.” Or, I might say: “As we spoke at our last visit, we talked about doing X, Y, and Z. These are things you said you aren’t as comfortable with, so here is what I’ve recommended in their place.” Write it out and show them. It is empowering and demonstrates to the patient that you have heard their concerns, you care about helping them, and you are trying to find a way to forge ahead. Patients appreciate it, and it ensures that you are on the same page. I revisit the plan with the patient periodically because things change, people grow, and people become more or less comfortable with things. Maybe once a year I say: “Hey, I just want to go back and check our preventive care plan here. Are we still on the same page about these things?” If you take this approach, I believe you will do well.

Occasionally, there will be times when things won’t go well. If something happens, trust breaks down, and the patient feels harmed or that you overstepped by bringing up certain topics, you apologize and move on. It makes a world of difference to patients when you apologize. You don’t lose anything by doing it. If a patient is hurt by something that occurred in your exam room, it is not a matter of right or wrong. You are just acknowledging that this resulted in a patient feeling bad. A good example is you might accidentally misgender them. That can, understandably, be upsetting. In response, you can say, “I am so sorry—I apologize” and then move on. Don’t make excuses. The patient will usually accept the apology and frequently understand. As long as it is not a pattern, the trust will not be permanently breached.

Key Takeaways

Overall, I advocate for the building of organ‑based, gender‑affirming care plans when taking care of transgender patients or, for that matter, any patient. Focus on the organs that are present and speak about them in as nongendered a way as possible.4 Try, where possible, to meet the patients where they are in terms of their care and what they want for their own bodies. At all times, strive to give the power back to the patient—they should be the ultimate decision maker, with you as their expert consultant.