The Calculus of Caring

For reasons of liability, my colleagues and I are encouraged to refrain from transporting patients in our own cars, and we are told in no uncertain terms that the risk is ours if we choose to do so. At various times, I have attempted to eschew taking patients to appointments in my car, but every time I do it "just this once", I'm reminded of how often it seems like the easiest and most convenient thing to do. The poor and disabled often have great difficulties with transportation. Through Medicaid, van service to medical appointments can be arranged, but it takes a prescription from the primary doctor which has to be renewed every year. The patient then has to call to arrange rides which often prove to be unreliable, especially when Medicaid contracts the rides out to private vendors and taxi companies. Still other patients are unable to use the phone to schedule appointments due to hearing impairment, language barriers, or cognitive deficits, while others simply cannot negotiate the series of voicemail message hoops which must be jumped through to speak with a real operator. Couple that with frequent wait times of up to 30 or 60 minutes to schedule a ride, mental illness, and physical disability---frustration and exasperation reign.

Taking all of this into account, I choose wisely when I take a patient in my car, and I try to use that close proximity and captive audience for therapeutic purposes. Being in a car can foster conversational intimacy. The car is like a cocoon in which the driver and passenger ride---private, temperature-controlled, comfortable, quiet. Sometimes deep conversations can be engendered simply by the simultaneous closeness and relative lack of eye contact that drivers and passengers must somehow finesse in order to converse. Keeping my eyes on the road with occasional glimpses towards the passenger seat, my patient is able to be in their own world but speak to me freely, and this can often bring about aspects of conversation which might be less comfortable while sitting together in an exam room at the clinic or even in the patient's living room. I appreciate this difference and make use of it in various ways.

My work allows me the ability to see patients in their homes, experiencing their personal daily environment, interacting with their family and children, looking in their refrigerators and cupboards to assess their nutritional practices (with permission, of course), while also assessing their home for physical impediments which might compromise their safety or otherwise thwart their independent self-care at home. I also attempt to ascertain if there are firearms in the home, smoke alarms, working locks on the doors, safe electrical wiring and outlet use, and relative cleanliness. This information---generally unavailable to any doctor---is also under-appreciated by most doctors and not taken into account during those brief patient visits, although the providers with whom I work are more tuned in than most to the psychosocial aspects of our patients' lives.

Today I visited a patient who is basically squatting in her oldest daughter's apartment for want of a better situation. She sleeps in a medium-sized bedroom with her two school-age children, sharing an inflatable queen-size bed. To my surprise, a one-year-old pit-bull was curled in her lap as she sat on the bed, and I was greeted by this new family member's demonstrative and unbridled affections. She obviously sensed her owner's positive reaction to my entrance, and immediately embraced me as one of the pack. I sat on the dirty carpet and communed with this canine soul, who looked into my eyes as only a dog can.

This woman is dear to me, and we have had many heart to heart talks over the years--some in the car, some at the clinic, many in her myriad apartments. Due to our friendly intimacy and familiarity, I imagined that rolling on the floor with her new puppy was in no way professionally inappropriate. It was, in fact, therapeutic for us all.

These relationships each have their own tenor and particular rhythm. With this particular person, I sit on the floor, play with the dog, and we chat about much more than her health, always bearing in mind that this is a professional relationship, a helping relationship of therapeutic value. In this type of work, we sometimes walk a fine line, the boundaries blurring, but building relationships is what it's all about, after all. Without those warm bonds, it's nothing but clinical rapport, which to me is a chillingly stiff boundary which holds little interest for me.

So yes, these folks admittedly live in a corner of my head both night and day, but the value which I derive from these relationships repays me for my labors in the larger scheme of things---the karmic and dharmic bank, if you will. It's the calculus of caring, the mathematics of the calculation a mystery, and the final result so much more than the sum of its parts.

Redundant Malignancies

Tomorrow I have to face informing a client that his cancer has returned. I became privy to this information late on Friday afternoon, the primary doctor calling me on my cell-phone to give the results of the biopsy. I played phone-tag with the surgeon, who confirmed in a message that the bad news was indeed true. I know I'm the best person to do the telling, but it's a wrenching task about which I'm cringing tonight. Being the bearer of troubling news is never a comfortable role to play.

Meanwhile, another patient of whom I am exceedingly fond faces a rough road as his cancer resurfaces. A new round of chemo is upon us, and my energy is spent in coordinating care, alleviating symptoms, and giving support in whatever way is best.

The last time I faced several surges of patients' recalcitrant malignancies, two deaths followed quite swiftly. Am I facing yet another round of deaths around some not-too-distant corner? Perhaps. It's par for my course, and it's a course I choose to run.

What More Can I Do? I Guess There's Always More...

This morning, the visiting nurse found you by chance. You were standing on a street corner in the unseasonable warmth of the winter sun. She swept you into her car, called me, and brought you to my office, transferring you from her car to mine before I whisked you off to the Wound Clinic for your appointment. Magically, we were only fifteen minutes late.

Your open wound looks better, but now that you're homeless I explained that it was now up to you to find me, not vice-versa. You swore up and down that you will follow up and stay in close contact. Your health is precarious and the stakes are high.

Your life is a mess. You're homeless, addicted to cocaine and heroin, no longer go to the methadone clinic, and rarely take good care of yourself, making poor choices under the best conditions. I was very clear with you today that I will no longer chase you down and bend over backwards. You must do some work, show some motivation, reach out and stay in touch.

Did I motivate you? Does the progress we're making with the healing of your wound bring you hope? Does having someone show compassion bring you closer to self-love? I hope so. Your life is as valuable as any other, but you first have to value it yourself.

Tonight you're out there somewhere, hopefully not on the street. There are some harsh realities in this world, and you have been visited by your share of difficulties. I pray that you make some positive choices for yourself. May clarity of mind and a desire for healing plant themselves in your consciousness in the days to come. I won't give up on you, but I place the responsibility squarely where it belongs---on your tired shoulders.

What More Can I Do? Nada.

I discussed you in Part I and Part II of this "series" of posts. Last week, your sister called to complain that you are being evicted from your apartment for drug-related violations of your rental agreement. Seems a guest of yours tried to sell heroin to an undercover cop in your parking lot, and your neighbors have been complaining of the unsavory characters who hang about your place. She asked me to call the Housing Authority and vouch that you are clean and sober to assuage their concerns. How can I do that when the methadone clinic reports repeatedly dirty urines and the visiting nurse has seen new track marks on your arms this month? You've made a messy bed, and now your sleep in it will only become increasingly uncomfortable.

In a last-minute effort, I referred you to the local legal aid society and put you in the sights of an earnest and helpful paralegal who was unable to save you from yourself. I drove over to your apartment in a driving rain yesterday morning and met with the Sherriff and the Housing Authority representative to discuss your imminent eviction. A moving van was on the way to take your belongings to storage, your sister crying in the corner, blaming me for not intervening and stopping the eviction while herself refusing to take you in. The police were also on their way to "assist" you and your sister in vacating the premises as the locksmith changed the locks. After a talk with the Sherriff and other officials, I drove away, knowing full well that within a matter of hours, you would be on the street, the bandages on the gaping wounds on your legs soaked with rain, your massively edematous (swollen) leg aching in the damp cold.

Where are your friends who so readily took advantage of your dry apartment as a shelter from the cold and a place to shoot up? Where are your siblings who bemoan your circumstance yet deny you shelter? Where is your common sense which has been superceded by your addicted brain? The cruel cold world was waiting to swallow you whole, and there was nothing I could do other than refer you to the local shelters and beg you to call me on our office's toll-free number.

You sat there with an incongruous half-smile on your face as the reality of your pending eviction became clear. I, your last hope for salvation, had failed to remedy your sorry situation, and now you faced being turned out as the city streets flooded from the incessant rain, sewers overflowing and icy roads running like small rivers. Cold and cruel is right, more accurate than any of us sheltered suburbanites can know.

Where are you today? How long until you lose that leg? I know we'll miss that appointment with the wound specialist tomorrow---you'll never call. In this morass of misery, heroin and cocaine are most likely your only friends, the only source of temporary succor you can find. I fear that your death is imminent, and my power to prevent it nonexistent. These are the harsh realities, and I pray in this moment for your freedom from suffering in whatever form that freedom might take.

Namaste.

One Year of Digital Doorway

Today marks the one year anniversary/birthday of Digital Doorway, which was born with a brief post last January 18th.

In some ways, I'm shocked that I've stuck with it so long. I'm also shocked that DD receives 100-200 hits on a weekly basis. And according to StatCounter, I have had more than 8700 pageloads since I began tracking in February of 2005, putting my actual total close to 10,000, which is difficult for me to believe. That said, while many of those hits might be seconds long---if that!---the general volume of traffic is both appreciable and appreciated. I am also appreciative of my blogger friends and colleagues with whom I have developed on-line friendships and correspondences, and send great thanks to everyone who links to me out there in cyber-space.

When I began blogging at my brother's behest on January 18th of 2005, it was somewhat unclear what my blog would actually be. While, on one hand, I could have focused entirely on healthcare in general and my work as a nurse specifically, I found that I just have too many pokers in the fire to produce a consistent blog on one subject, although many people do it very well, I may add. And while there are advantages to having a "special interest blog" (ie: being easily categorizeable on blog search engines), it's also quite liberating to have a blog that is a constantly shifting and surprising entity, covering varying topics but also returning frequently to some central themes: health, personal healing, compassion, etcetera. Not being bound by topic and subject, my entries are born from the day's events, dreams, interactions, and thoughts.

The benefits for me have been too numerous to mention in full: personal and professional insights; valuable feedback from readers; a welcome and immediate creative outlet, free of editors and publishing woes; a feeling of connection to the wider web of folks out there who are moved and determined to communicate their thoughts and experiences and dreams to a wider, unseen audience.

As the blogging phenomenon continues to develop and mutate, I'm sure we will see changes in how blogs are recognized, categorized, published, and disseminated. I imagine a relatively small percentage of Internet users actually visit blogs regularly, and it will be quite interesting to see how those numbers change over the ensuing years.

For now, I'm gratified that DD has some regular readers, is linked on a number of sites, and has attracted comments and readers from various corners of the ethers. If aspects of my writing or style are disappointing to some, my apologies, and the wonderful thing about this medium is that there is simply a dizzyingly inexhaustible number of individual voices from which to choose.

On this one-year anniversary, I give thanks for such a simple and creative tool, and look forward to another year of introspection and exploration. Thanks for joining me on whatever portion of the journey you choose.

The Patient Patient

No wonder they call them "patients". I accompany my patients to many appointments, whiling away the hours in myriad doctor's offices as we wait to be seen by some specialist or another. I make small talk with my patient, discuss our strategy for the visit, answer my pager, make calls, jot notes in my Palm Pilot, finish notes from previous patient encounters, and otherwise try to make use of this sudden "down time". Sometimes, my patient will nap in their waiting-room seat, and on a rare occasion, I too will succumb to Morpheus' mid-day visits, catching a brief snooze as the TV in the corner of the waiting room blares CNN and other patients and their family members desultorily leaf through magazines or stare into space.

Is their an etymological link between patience the virtue and the patients who wait in doctor waiting rooms around the world? Perhaps not, but I see the correlation on a daily basis, and I cultivate my own personal stores of this quite useful virtue, seeing it as an occupational hazard which can, in some ways, lend itself to learning Zen and the Art of Waiting in Medical Waiting Rooms.

For anyone who has ever waited for what seemed to be an inordinate time for the doctor to see you, I feel your pain. Are you frequently a patient? Then begin a meditation practice and use those hours for your own self-growth and exploration. Doctor's offices won't be changing any time soon, so we all must practice our patient patient skills, or continue to suffer in those exhaustingly banal waiting rooms which never offer enough comfort to alleviate the pain of unwillingly inhabiting them for extended periods.

Here's to patience, patients, and those who can gracefully combine the two.

What More Can I Do?, Part II

The patient whom I discussed in this post received an eviction notice this week. It seems he actually missed his court date and will be summarily removed from his home by the Sheriff quite soon. This is not the first time I've encountered such a situation, and though my patients often look to me to somehow magically solve these housing nightmares, the best I can do is point them in the right direction.

For people with HIV, there are specialized housing advocates and programs, replete with housing case managers who go to bat for clients and fight to prevent homelessness and needless evictions. For people without HIV, there are housing advocates and legal aid for the poor, but it is a uphill battle, more so for someone who has little or no command of English, no money for transportation, debilitating illness, and an addiction which often precludes timely and thoughtful action under duress. For as I have seen in so many cases, when the going gets tough, the addict goes copping. You see, stress and seemingly insurmountable circumstances can be a natural trigger for substance abuse---a sad but brutal equation.

If a patient lives in subsidized housing and I have documented in their chart that they are actively abusing substances, I cannot testify for them or sign an affidavit stating that they're clean and sober (as some of my patients have asked me to do over the years). If I testify that a client is clean in my sincere effort to ward off an eviction, and then my notes are subpoenaed, I would be in deep professional and legal doo-doo. That said, a number of my star patients have been in sticky legal situations and I've gone above and beyond to help them, often because they are so proactive in helping themselves and refuse to be victims, and have done their utmost to keep their lives on track.

Sadly, there are a number of people out there who, for one reason or another, just cannot get it together, and cannot pay attention long enough to focus on their well-being and stability. As non-sensical as it may seem to some, learned helplessness and abject hopeless victimhood can be devastating in certain populations, especially where language barriers and cultural differences erect even more roadblocks. It is often just these individuals who come to me and my colleagues: physically broken, emotionally stunted, socioeconomically disengaged, and weighed down by poverty, mental illness, or as previously stated, substance abuse. These are the "train-wrecks" of the community health centers, and their care---often ignored and disavowed by most of the system---becomes our rallying cry. While that cry may at times feel more like a whimper for mercy, none of us are in it for the glamour or the glory and we choose our work quite knowingly. Compassion fatigue is real, but one needs huge stores of patient compassion (and compassionate patience) in this business.

Will this particular gentleman be out on the street next week? Perhaps. Did I connect him with just the right people in an attempt to assuage this dire situation? Oh, yes. Am I powerless to do more? In my mind, yes, unless I choose to take him home with me (an impossible, improbable, and altogether inappropriate idea).

Will another gentleman be incarcerated for something he swears he did not do? Maybe. Did I write a heart-felt letter to the judge, declaring my patient's poor health, poor immune status, and sincere attempts to better himself? Absolutely.

Did I come home to my cozy home and leave them all to their own lives and battles as I enjoy my weekend with family and friends? You bet. If the caregiver does not care for himself, there will be no more care left to give.

What more can I do? For now, I err on the side of self-care, and the pieces will simply fall where they may. I cannot fix it all and I never will.

What More Can I Do?

You are a middle-aged man with poorly-controlled diabetes. You inject heroin and cocaine periodically. Since your veins are shot, you often inject using a technique called "skin popping" wherein you inject under the skin rather than intravenously, sometimes developing infected abscesses in your arms that have to be surgically debrided. You have massive lymphedema (picture elephantiasis) of one leg, and ulcers frequently open on your legs and arms. You go to methadone every morning, but they're going to discharge you because your toxicology screens keep coming up positive for opiates and cocaine.

I'm worried that you may lose your leg or die from an infection. I have the visiting nurses see you every day to dress your wounds and administer your medications and insulin. As far as the open wounds, I now have you connected at the Wound Clinic. Since transportation is an issue, I actually pick you up and take you personally to your appointments so that your treatment is expedited. I also serve as translator. When you're sick I come to the house to visit you, and I keep your primary physician updated regarding your status. When you miss an appointment, I reschedule it since you don't have a phone. The visiting nurse and I consult about you almost every day. Only a handful of patients in the United States have this type of intensive and personalized healthcare delivered to them at no cost. I wish you could grasp the reality of that.

Despite all that I do, you still miss appointments, avoid the visiting nurse, skip medications, make excuses, and increase your chances of harm to yourself. I don't know your complete history, but I imagine there is a long story rife with psychic trauma, perhaps violence, abandonment, addiction, family stress, poverty, mental illness, and learned helplessless. I have no idea what experiences brought you to this point. From my standpoint of relative normalcy and stability, I cannot really understand your life, but only empathize with what it must have been like.

I want nothing more than to spare you frightening and painful outcomes which are lurking around every corner, but I can only do so much. Compassion fatigue is real, no matter how traumatic the patient's past. There's a point where I have to decide that I'm working too hard for you, doing too much, enabling you to not help yourself. Where do I draw that line?