Volunteering With Kacy

Kacy in her volunteer uniform

I have discovered a new passion: volunteering with my little Norwich Terrier, Kacy. I've always considered her therapeutic, because her raison d'etre, besides eating, is cuddling with humans. She craves contact with people in ways I've never seen in a dog.

I first heard about P.A.L. (People. Animals. Love.) from my primary care doctor a few years ago. It sounded interesting, but Kacy was too pugnacious with other dogs in her youth. When it became evident to the hospice organization I'm volunteering with how obsessed I am with Kacy, they asked me if I would consider having her certified by P.A.L. so she could accompany me on hospice visits. She is a senior lady now (nine and a half years old), and has chilled out considerably, so we decided to give it a try. P.A.L. is not a therapy animal organization, so they have a more attainable standard for their pet volunteers. Kacy had to go on an orientation where she demonstrated her sociability and her ability to respond to basic commands like sit, stay, come, and heel. Of course, we had to provide records showing she was current with her vaccinations. We then had to go on two evaluation visits, which are real visits with other established P.A.L. volunteers. The team leader watched how we each handled ourselves and had to sign off on a form saying we were a good fit for this type of work. Luckily, Kacy and I passed. We did both of our evaluation visits at a nursing home in our city, where we continue to volunteer. You'll notice Kacy wearing her P.A.L. bandanna in the photo. When we volunteer with P.A.L., other dogs and their handlers are there, and we are building a rapport with some of the other regulars, including Romeo, the amazing skateboarding Sheltie.

Sunday was our third visit with P.A.L. to the nursing home, and we are starting to build relationships with the residents who remember us. There is a charming woman who loves dogs of all sizes. Another 98 year old resident always proudly tells me her mother was a nurse for President Roosevelt, and that she herself worked for the federal government for 40 years. There are also non-verbal residents who also respond to the dog. If you've never seen this happen, it's amazing: people who otherwise don't respond very well can get "woken up" by interacting with an animal. Nowhere have I seen this more dramatically than I did when I volunteered at a nursing home with my Westie, Arthur, in high school. There was a woman who had a massive stroke who lay catatonic in her bed except when we put Arthur in it. Then, she would start to moan with pleasure and stroke him. The nursing staff would gather around to watch this because it was literally the only time this resident interacted with anything. I guess animals touch some deep place in our brains. At this nursing home, there are residents who don't speak but stop to pet the dogs. There are others who can't speak clearly anymore, but clearly enjoy cuddling Kacy on their laps.

The point of this work is not to have people make a fuss over the dog per se: Kacy is the bridge between me and other people. She opens up doors that I can't open by myself. Another example of this is our literacy work with kids. We went to the local library last week to let children practice their reading with dogs. There is a trend to use pets to help in this capacity, because many kids feel judged when they read to people; not so when they read to dogs. It really warmed my heart to have a 12 year-old (reading at a much lower level) read aloud to Kacy. It would not have appealed to her to read aloud to me, but she was keenly interested in snuggling with and engaging with the dog.

This has done wonders for my relationship with my little dog. I always enjoy her company, but it has reinvigorated our relationship to do this service work together. Once fearful of the car, now when I announce that we're getting in it, she darts down the stairs. I love seeing how she brings people out of their shells, and I just enjoy doing things with her. I am eager to see how Kacy does on our first joint hospice visit tomorrow. 

Hospice Volunteer Training: Day Two

"Tears fall, but why am I crying? 
After all, I'm not afraid of dying. 
Don't I believe that there never is an end?" -- Iron Maiden, "Hallowed Be Thy Name"

Day two of hospice volunteer training covered the emotional and spiritual needs of the dying. I learned that only ten percent of us will die suddenly; the rest of us will have to deal with some protracted death. Hospice believes that this dying process can be a meaningful stage of one's life and endeavors to make it so. One of the biggest take-aways from my training is to get hospice involved early, so families can take advantage of all of the services they offer. If you wait until someone is "actively dying" (really nearing the end of life), they are not going to feel up to utilizing the chaplaincy, social work, and volunteer time that can make this journey a more pleasant one. For example, we had a panel of current hospice volunteers come speak to us. I was touched by a gentleman in his 70s who said, "I try to find the thing that the patient has lost and in some way bring it back to him." For example, one of his patients loved poker, but hadn't played in years. The volunteer started playing poker with him on his twice-weekly visits, and other men from the floor of the assisted living facility joined in! I was so moved by this man's dedication.

The hospice volunteer coordinators did an excellent job with this training, and provided us many relevant articles in our large binders. The section on the emotional needs of the dying was intense, but also informative. The most powerful article, to me, was written by a doctor who lost her six year-old, Liza, to cancer. It was a beautiful illustration of how hospice care could ease this girl's death for the patient and her family. The article goes into detail about how Liza wanted to die and how thoughtful hospice care enabled that . One of our training exercises was to brainstorm about our "ideal" deaths, inasmuch as there can be such a thing. None of us is getting out of here alive, and there is a 90 percent chance that you will not die suddenly, so it's worth putting time into thinking about this, and more importantly, sharing your preferences with your loved ones. Everyone agreed the first goal was to minimize pain. Beyond that, here are my wishes:

To die at home, in bed, surrounded by close family, my best friend, and my dog(s). I would like there to be candles lit, and I would not like music (not even my beloved Iron Maiden). I would like my sheets to be clean. I will definitely want some spiritual reconciliation near the end of my consciousness: saying the viduy (confession prayer) with a rabbi whom I like, and meeting with a meditation mentor or teacher.

Other people participating in the training said they wanted music, specifically Bruce Springsteen. Some people thought less about atmospherics and more about things like ensuring there would be no family drama during their deaths, and knowing that they will have helped their daughters plan their future weddings.

We talked a lot about how to conduct oneself on a visit, such as what to talk about and how to behave. We did role-playing where we acted out different scenarios, like a patient's brother asking you out (!) or having a patient ask, "Why is this happening to me?" Social workers talked extensively about preparing yourself mentally for entering a hospice patient's home and the importance of leaving your baggage out of the visit since they have enough problems. This is a good reminder for an over-sharer like me. They even recommended specific techniques to kind of clear yourself before you enter the home and enter into a mindful presence to be of maximum service on your visit. We also discussed the importance of self-care for volunteers since this is stressful work, and the importance of healthy boundaries. We were told many times to block caller ID on our phones when we call the patient or family and certainly not to bring any patients to our homes.

To try to cultivate empathy and drive home the hospice patient's experience, the trainer conducted an exercise in which we wrote the following on 16 sticky notes: your four most valuable possessions, the four most important people to you, the four roles you value most and the four activities you most enjoy. You then laid these stickies out in front of you, and the volunteer coordinator walked around and randomly took them away from you one by one and crumpled them up. The point was to drive home the reality that hospice patients lose all of those things. Many people were deeply moved by this exercise, and one volunteer even had nightmares about it and couldn't sleep last night. However, I found it a little cheesy. I kept thinking, "My role as a wife wouldn't go away if I were in hospice, nor would I lose my wedding ring if I were dying." As for losing the ability to perform activities I enjoy, because of my debility from my serious Lyme Disease infection, I did lose the ability to do nearly all of my favorite activities, and others that aren't favorites but are critical to independence, like driving. Even though this sticky note exercise did not resonate with me, I still appreciate its message that people dying are rapidly losing control of things they hold dear.

In addition to discussing emotional needs of the dying, the second focus of the day was on their spiritual needs. One of the two hospice chaplains came and explained his job to the volunteers. He was really cool, and explained that he takes a very broad view of spirituality, which he explains to patients. For that reason, he ends up visiting with many people whom do not think of themselves as religious. Most people feel connected to something bigger than themselves, even "just" being part of a community. To this rabbi, that connection is the essence of spirituality. The rabbi brought a lot of insight into how to speak to the dying. I thought it was interesting that he often ends up working with people who are already very involved in their church or synagogue, because their own clergy people are overextended or because their minister or rabbi said, "You should view me as a generalist, and the hospice chaplain as the death specialist. Work with him, too."

Last but not least, on day two of training, we got our mandatory tuberculosis test. Ouch! It was a very long and emotionally intense day, but I felt like it did a lot to get me prepared to be a hospice volunteer.

Hospice Volunteer Training - Day One

Yesterday was my first day of training to be a hospice volunteer. It was really interesting, and I think it's going to be a very rewarding volunteer experience. Some people have asked me why I'm putting energy toward this. It sounds very cheesy, but it feels like a calling. My father died painfully of multiple myeloma, and his doctors at the Mayo Clinic referred him to hospice when he exhausted his treatment options. Unfortunately, his wife had strong cultural prejudices against hospice, and refused his admittance. I believe that hospice would have made a difference in his death. I admire the whole-family approach to hospice: the people who receive care are the hospice patient and his/her family. I also admire the hospice philosophy, which addresses the physical, emotional, social, and spiritual needs of the patient.

Unfortunately, I have a lot of recent experience with grief and dying, and I think I can put that to use being of service to hospice patients and their families. It was meaningful for me to help my father die; it felt like critically important work. My experience grieving my pregnancy losses and informally counseling other couples dealing with the same issue is another thing contributing to my desire to do hospice work.

One of the coolest things about hospice volunteer work is that it is taken very seriously by the hospice agencies: any hospice that receives Medicare funding (most of them) must fulfill five percent of patient care hours through volunteers. Therefore, Medicare requires this 20 hours of volunteer training that I am going through. I also had to provide three references and consent to a background check. Since the nurses only start visiting patients very frequently as they near death, the volunteers provide eyes and ears on the patients in between clinical visits. When I complete my training, I will be matched with a home hospice patient whom I will spend at least two hours a week with. You are there for them, so they guide the activities. Many want to be read to. Some want to sing with you, or listen to music. The volunteer coordinator was happy that I knit, because some patients want to either knit with volunteers, or watch them knit if they can no longer craft themselves. The volunteer coordinator's dad was also a hospice patient, and all he wanted to do with his volunteer was argue about politics! They match you up. 

The first day of training covered the history and philosophy of hospice. It was pretty inspiring to learn about Cecily Saunders, who founded the first hospice in London in 1967. Saunders was a nurse who was bothered that dying patients weren't getting the specialized care they needed. She recognized she wouldn't get the respect she needed to make significant changes to the system without a medical degree, so at age 33, she went to medical school.

The volunteer training covered a lot of topics, including the need to be non-judgmental, because patients and families react to dying differently, and because people run their households differently. An interesting point they brought up was patient use of marijuana. They said we can't touch it, but basically, they look the other way. Really, how cold would you have to be to call the cops because a terminally ill patient was smoking weed? If you would, you're probably not a good candidate for hospice volunteer work!

Because I have an interest in medicine, the most interesting part of the training for me yesterday was when a hospice nurse came to talk to the volunteers for an hour. She got into a lot of the clinical issues she handles and how the volunteers play into the care team. The nurse shared stories from her 20 years working in hospice, and talked about the satisfaction she gets from her job. She said that one issue she sees a lot -- especially with Jewish hospice clients -- is food issues coming up when someone is dying. It is natural for dying patients to eat and drink very little, which alarms families. Apparently, it really alarms Jewish families, which have internalized the message that "food is love." The nurse described how this comes up and how they handle it, and she told volunteers how to address it if the family is distressed that the patient isn't eating. Forcing food and liquids actually makes the patient's death more painful, as the body can't process the waste products efficiently.

The primary goal of physical care for the hospice team is making the patient's death journey as painless as possible, so the nurse discussed pain management and people being freaked out by hospice's use of morphine. As someone who believes pain is under-treated in this country, I was totally on board with this.

Unfortunately, the second and third days of volunteer training were delayed due to Hurricane Sandy, so I will have to fill you in on those mid-November. I'm eager to have it done so I can be assigned to a patient. I really look forward to being of service in this capacity.

Didn't I See This Movie?

I had a surreal experience on Kol Nidre night (the night when Yom Kippur begins). A young woman came up to me at synagogue and said, "Do you remember me?" I had supervised her immersion in the mikvah, a ritual bath, immediately before her wedding because the attendant scheduled to be on duty didn't show up. The night was very memorable for me because I had to be at the surgical center very early next morning to get a D&C for my third miscarriage; the last place I wanted to be was at the mikvah with a happy bride, but it was rainy and I didn't want her to wait any longer for the no-show. Anyway, it was this woman who approached me at synagogue. She told me how grateful she was that I showed up that night in general and all the more so, because she was pregnant. Now, in the movie version of this, I should have been, too: seriously, dragging myself out late at night in the middle of a tragedy to help this woman with a mitzvah (commandment) meant to help you conceive? It felt like the setup for some positive karma coming my way. Alas, the world doesn't work like the movies.

I think about my infertility more than I'd like to admit. I wish I didn't, but it's hard to not reflect when I see pregnant bellies at synagogue, or when I have a sweet interaction with a neighbor's kids. On Rosh Hashana I thought about our second baby, who was due then, and when someone told me her due date was Jan. 7, I thought of our third kid who was due Jan. 6. The one thing I can tell you is, infertility sucks. So much so that my friend who has cancer told me that he found infertility more challenging in many ways than cancer. His experience was that it was certainly more lonely. "People rally around you when you have cancer. That's not the case when you're experiencing infertility," he said.

One of the suckiest things about this is seeing myself turn into a person with behaviors I never, ever wanted to have, like avoiding pregnant friends. I think it is so petty and lame, yet find myself doing it anyway. I am trying to have compassion for myself around this, because I know my poor brain is trying valiantly to protect my wounded heart. I know this is a phase and it will pass. In the meantime, there is always Facebook.

Another eye-opener for me is how suffering related to infertility isn't related to how long you have been trying to conceive or how long you've wanted to be a parent. I was very late in wanting kids, then was thwarted by a very advanced case of Lyme Disease. It is hard to make love, let alone seriously contemplate parenthood, when every nerve in your body is on fire and you can't use your arms. For some (dumb) reason, I thought that would mean I would be less sad about our infertility, but that's not how it works. The heart wants what the heart wants, and furthermore, sometimes I have to encounter the second arrow of, "Well, if you had come to this sooner, things might be different." Feeling like there is a hole in your family is a lonely feeling, no matter how long you've been feeling it.

I am working hard to keep things in perspective, like by taking account of the tremendous blessings that I have, especially being happily married to my best friend. I cling steadfastly to the belief that you can be happy no matter your circumstances. I also do believe that everything will work out how its supposed to, whether or not I'm immediately happy with the results. Still, I can't help but feeling thwarted in doing God's will, as David eloquently wrote about, even as I have to concede that this may not be God's will for us. We'll see; it's definitely too early to make that call. David and I are definitely still in the game.

In the meantime, I continue to pray and take comfort in the struggles of the Jewish matriarchs, most of whom suffered infertility. I read Hannah's story in I Samuel and was moved to tears. I'm trying to use this fallow time as a time to work on myself and be of service to others. If you are the spiritual sort, please keep us in your thoughts and prayers.

Words That Harm, Words That Heal

"Words are, in my not so humble opinion, our most inexhaustible source of magic, capable of both inflicting injury and remedying it." -- Albus Dumbledore to Harry Potter in film "Harry Potter and the Deathly Hallows Part II"

"Too much time on my hands, I got you on my mind
Can't ease this pain, so easily
When you can't find the words to say, it's hard to make it through another day
And it makes me want to cry, and throw my hands up in the sky." -- Iron Maiden, "Wasted Years"

I am so grateful to all the friends, family and acquaintances who are reaching out in many ways to express their sympathy to David and me about the recent loss of our unborn child. Most people say something along the lines of, "I don't even know what to say to you." That is unsurprising, because there is very little to say other than, "I'm sorry," which feels inadequate to most people saying it, even though it isn't to me when I'm hearing it. In fact, I would argue that when you veer much beyond that, you risk stepping over a line. I am obviously very public about this, which opens me up to all kinds of comments from well-meaning people. But I've had to reconcile enough painful "condolences" these last two weeks that I want to write a specific post about some do's and don'ts to comfort women who have miscarried. Obviously, every couple is different and every loss is different, so I'm sure there are people who would not be offended by what offends me, or who might not be comforted by what comforts me. But, I'm pretty reasonable, and I think I can provide a place to start. A friend of mine asked me to pen this.

Don'ts

1. Here be dragons! There is one primary thing to avoid when talking to a couple or woman who has lost her baby: please do not say anything along the lines of, "There was something wrong with the baby. That's why this happened." Nothing is less relevant and more hurtful at this time. Grief is a duty of the heart, and this comment is rational, a response of the mind. Yet, if I had a dollar for every time someone said it to me lately, I could treat a dozen friends to Venti-size expensive coffee drinks. Let me qualify this by saying that most people who dole out the "something was wrong with the baby" line are well-meaning people who are trying to help. Quite a few of them are female friends of mine who have miscarried, and this line of reasoning helped them cope with their pregnancy losses. Yet, it cut me like a knife when I heard it, and was only made worse by the people who embellished it with, "Better this than you have a child with an illness or a special-needs child." This is offensive on so many levels, I can't even go here.

We are decently bright people, and we understand the science quite well; biology was my minor and remains an interest, and I was a health writer. Furthermore, as common as miscarriage is (very), it is actually not well-understood and varies case-by-case. An acquaintance of mine related this "something wrong..." line in the name of her husband, a paramedic. When I whined to a friend of mine -- a very advanced health-care professional with a 23-year career in obstetrics -- about this she gave the deliciously snarky reply: "Wow. I'm so impressed that her husband the paramedic has figured out what the best researchers and physicians in my field continue to study and struggle with." In other words, it's complicated. In fact, a reproductive endocrinologist has since explained to us that there are five main categories of miscarriage, and there being a problem with the baby itself is just one of those five. That leaves four other possibilities.

Even if you have miscarried and even if it comforted you to believe that the pregnancy terminated because of a specific problem, it is enough of a potential bombshell that it's probably best to avoid saying it to someone else.

2. No Medical Advice, Please: Pirkei Avos (Ethics of the Fathers) states, "Who is wise? He who learns from all people" (4:1). However, there are limits to this, and if there is one thing I excel at, it's taking care of my wellbeing. My journey with Lyme Disease and fibromyalgia has ensured that I have to be a fierce advocate for myself; I have spent years learning how to make the health care system work for me and my family, and I don't accept any half-assed medical care. So, I don't want to sound haughty, but my experience is that most people who don't have an M.D., NP, or PA credential after their initials don't have much to teach me about medicine. I get my referrals from top-rate doctors who know my health history and my personality well. I had a cousin recommend I get tested for a clotting disorder that runs in the family, which I really appreciated, and still many others say, "Let me know if you need medical referrals." I appreciate all that, but not much more specific advice unless you have had the same problem that I have and have specific information that could help me. I acknowledge that until now, I have had no experience with reproductive problems, so what I do value is other women's and couples' experiences who have been on this journey. However, if one more person tells me that acupuncture would prevent a miscarriage, I'll hurl on their shoes, I promise.



Seriously, I'm thrilled you're pregnant: Don't be afraid to tell me you're expecting. Just tell me in private if we're close friends. I'm genuinely happy for my friends who are expecting, and perhaps selfishly, I never want to become someone who isn't happy for people who are pregnant. It's just important to me. I think I've done a good job of holding my own disappointments in one hand, and the joy of my friends expecting children in the other.

Etc.: Another thing that has been hard for me to handle are any kinds of statements about my personal faith through the tragedy of a miscarriage. As I mentioned in an earlier post, I bristled at someone's comments to me along those lines. I think it's probably best not to make any presumptions on this topic. The other thing that annoyed me is people who ignored this because of their own awkwardness; it's a big deal to us, and no, we don't expect you to fix it, or even really comfort us. So, with all that said, what does help?

Do's
1. Gifting Yourself: The number one helpful thing that other people did for me in the aftermath of the miscarriage was spend time with me. I had friends come over and hang out with me, hold me while I cried, and walk the dog with me. Sometimes all three! These visits lasted from 45 minutes to three hours, and they really helped. Other people checked up on me with frequent phone calls, text messages, e-mails, and Facebook messages. That also made me feel cared about. My religious community kindly cooked meals for our Sabbath, so David and I wouldn't have to worry about feeding ourselves; that was hugely helpful, and made us feel really cared about. Other people sent cards, which also felt good. Again, people just reaching out to say, "I'm so sorry," is really what mattered to us.

When I asked David what most helped him in the immediate aftermath of the miscarriage, he said, "When people asked me things, rather than told me things."

2. Prayer: 'Nuf said.

Health Care Chills

I just got health care chills, and as a veteran consumer of health care, I don't GET health care chills. Nothing was shocking, until today.

I am in Phoenix, AZ to go to my father's first appointment with his oncologist. He was recently diagnosed with multiple myeloma (MM), a cancer of the plasma cells. Plasma cells are blood cells that make antibodies called immunoglobulin. I am a firm believer that you need lots of people paying attention to health care matters. I take advocates with me to important appointments and think everyone else should too. If you disagree, maybe this will change your mind. Too many cooks can spoil the broth, but not enough cooks can also be devastating. The doc we saw today will not be my dad's main doctor, but he was who was available for us to have a consultation before my dad is scheduled to begin chemotherapy next week. Let me say from the outset that this is no slacker practice; it's definitely a top oncology practice in the area.

For this instance, I had read up on MM to brush up for this consultation, and had read from two excellent sources that if a patient uses certain chemotherapy drugs, it rules out the option of the patient getting a bone marrow or stem cell transplant later. One of my questions for the doc today was, "Is my dad a candidate for a marrow or stem cell transplant?" I got a very non-committal, "We'll figure that out later as we see how things go" kind of response. I told the doctor, "I read in the book your office gave us and on the Mayo Clinic Web site that use of certain drugs rules out this option. Are you planning to use one of those drugs?" The doctor looked at the chemo order and said, "You're right. We are planning to use that drug and it would rule out the transplant option. Clearly we need to figure this out before we begin treatment." The doctor said he would consult with my dad's oncologist and their practice head and get back to him. He added, "If that delays therapy a week or two, it's worth it." We said goodbye and my dad and his wife said that they were really grateful that I was there and had brought that up.

I went to the bathroom, shaking. It is the most dramatic example I have of the need for patients to be their own advocates. Gone are the days where you can assume that doctors have your back and all you need to do is listen and trust. Sorry, hon, you need to take a crash course and become a bit of a doctor yourself, or you can be totally screwed. It is harrowing to think that if I hadn't read the info I had and challenged the doctor on it, my father could have had one dose of a drug next week that would completely rule out his options for treatment forever. Doctors are too stretched to give every patient the best care they can; I happen to think it's an effect of our insurance-driven health care system: docs have to see 35-50 patients a day just to earn enough to pay their bills and draw a decent salary. No doctor can keep great tabs on that many people a day; it would be super-human.

Another dramatic example of the need to be your own advocate from my own health care saga, is that I had to ask my doctor for IV antibiotics for my Lyme Disease. I had read that people with my degree of infection rarely, if ever, get well from just oral antibiotics alone. My doctor was about to discharge me from his care with just four weeks of oral doxycycline therapy, when I said, "I've heard from many sources that people with neurological damage from Lyme need the IV antibiotics, too. Is that right?" He said, "Oh, you want to try that? Sure." I saw a dramatic improvement after the IV treatments; until I had them I could not wash my own hair because I couldn't lift my hands to my head. I had and still have a long road to go in my healing, but there's no way I'd be where I am without those four weeks of IV Rocephin.

I am superbly grateful that I have the wherewithal to be this kind of advocate for myself and my loved ones, and that I have people in my life, like my husband, who do the same for me. I shudder to think about the people who don't have the resources, intelligence, or communications skills to do the same. It's scary to think that your entire quality of life -- or your life itself -- can hinge on the extent to which you do so effectively.

Sorry, We Don't Take Health Insurance

"Ok Sarah, that will be $1,576 for today's visit," the receptionist at the doctor's office said. That was for a new patient consultation including labs sent to a private laboratory (not Quest or Labcorp, the only ones that have contracts with major health insurers). Granted, the appointment was for a very, very specialized doctor who is one of only 30-40 practitioners of this kind in the United States. I look forward to sharing the details about this with you once the problem is, God willing, solved.

One of the harsh realities of living in the Washington, D.C., area is that fewer and fewer doctors and other health care practitioners take any health insurance. I first encountered this with my therapist, thinking it was an anomaly, but its not. There are whole medical practices here, including gastroenterology practices that charge $3,000 for a colonoscopy that have opted out of health insurance entirely and have no trouble attracting patients. One of my friends from a country with a robust government-run health care system paid $4,000 for all of her prenatal care (minus labs and sonograms, which she got from in-network facilities) from a local pair of obstetricians after being treated like a farm animal at a massive ob-gyn practice that did accept her insurance. She doesn't regret it.

That there are healers who have opted out of taking insurance used to offend me on a deep, guttural level, and frankly, for the therapist, it kinda still does. The main thing that helped me get over resenting doctors who opted out of the insurance system was experiencing the higher caliber of care that I receive from them. At this point, most of my health care practitioners do not take any health insurance. This isn't because I love spending $200 for a follow-up visit to my Lyme doctor when I could see an internist for $10; I need the complex care that these doctors and complementary medicine practitioners excel at providing. They schedule adequate time for appointments (45 minutes) that insurance companies would cap at 10 minutes. My calls get returned promptly, instead of my message languishing at the bottom of someone's in-box.

A good example of this is the time I had a tricky problem involving a drug contraindication. I needed to take an antifungal drug for a gastrointestinal yeast infection, but the drug my yeast was susceptible to impeded metabolization of another drug I take that could kill me if not metabolized prompty. I called my doctor who prescribed the drug I was on already and he told me it was a tricky situation that would take a few days to work out. When he called me back later in the week, he had formulated a plan for me with the National Institutes of Health's lead investigator in the clinical trials of that drug. I thought at the time, "This is why I pay you $500 an hour." In an ideal world I could expect the same degree of effort and resolution from my internist who does accept insurance, but let's get real!

Besides the noticeable increase in the quality of care, the other factor that softened me to seeing docs who don't take my insurance is that I feel like its the crappy policies of the insurance companies themselves that have led to this phenomenon. They pinch pennies so hard, they scream. They will not compensate doctors for appointments that last more than 10-15 minutes, and their reimbursement rates for docs are based on what a doctor's visit cost circa 1969. Most disturbingly, all of the insurance company policies actually put them in the position of practicing medicine without a license; how else can I explain the menacing letters my doctors get asking them if it's ok to switch a prescription drug of mine for another one that is better placed on their formulary? How else can we explain restrictions on the length of appointments they will compensate docs for? One of my doctors told me that he doesn't feel that he can ethically practice medicine within the restrictions set by the insurance companies, so he doesn't try anymore.

Then there's the good old principal of supply and demand: if people in D.C. have the money to pay out of pocket, would you rather make $35 or $200 for an appointment? I thought so. The one thing that sticks in my craw about this is that although medicine is a livelihood, I still harbor some idealism that it is a calling, and that doctors should want to maximize the people they can heal. Limiting their practice to a small subset of the population means that some of the people who most need their care can least afford it. I'm sympathetic to this: my husband David and I made the choice to completely go outside the system in 1999 when money was very tight for us. We just decided that my health care was a top priority, and that we were willing to go into debt to do so. That means that quite a few doctors visits were paid for on credit cards back then. Granted, you have to be at least basically financially stable to have this option open to you; if we were living on the streets, we couldn't have charged doctors visits to Visa. Interestingly, David has had a complete conversion on this issue; he initially went along with my out-of-network jaunts begrudgingly, and now has seen the difference in my care and has come to Jesus, as we say in the south.

Another interesting twist on this is the increase in concierge medicine, like MD-VIP. My old internist joined that program. He still accepts many insurance plans and you still pay for every visit, but in addition you fork out $1500 a year for the privilege of retaining him as your doctor. In return, you're promised good customer service and communication and same- or next-day appointments. It also includes a really thorough annual physical. Of that retainer, my physician gets $1000 per patient and MD-VIP gets $500. I was one of only a few patients who declined to follow him into this program, but he still is my pulmonologist and he's an amazing doctor. When I learned he was joining MD-VIP, I wasn't surprised; not any slouch can command a hefty retainer fee. I wish I had thought of concierge care first.

After reading this, if you're asking, "Why does she still pay for health insurance?" I will tell you in my next post.