I'm sorry your parents were stupid and you died today. I really am. They didn't mean for you to come to harm, they loved you, they really did. Your family misses you terribly and I'm not sure that they will ever fully recover. I'm sorry little guy. I hope you never knew what hit you.
I have to say that this year I have learned a lot about the whole issue of limiting ones care and about the folks that while extremely ill, still want everything medicine wants to offer. For me, if I were to become terminally ill, couldn't communicate with people, had to have someone else take care of me, well, I wouldn't be able to stand it and would ask for hospice but many, many patients and families don't see it that way.
I have to say I have a pretty hard time with seeing what I perceive to be tremendous suffering. I hate to see diapered, contracted, drooling people, assuming that they are unaware of their surroundings, and are in some sort of psychic or physical pain. I curse their conservators or their family members for not changing their code status, for not just making them comfortable and allowing them to pass into the next world peacefully. However, my assumptions are not always correct. Some who appear this way are actually cognizant of their surroundings and are communicative in ways that are not immediately apparent. These folks somehow are actually okay with being ill and content to live their lives in their current state of being. It's hard to understand why, it's extremely hard to put myself in their shoes. I often question their sanity. I shouldn't be so judgemental. I guess I should applaude their ability to stand steadfast in their desire to live whatever their condition. Perhaps there is some sort of closure that they haven't experienced yet, perhaps a life task that has not been completed. It's hard to know and harder for those who care for them to accept.
Sometimes I wonder if we as medical providers offer too much to these folks. I question the ethics of continuing to offer life saving or prolonging treatment and medication to those who appear to have zero quality of life. For some providers it's hard to justify thousands of dollars worth of medical care for a seemingly vegetative or uncommunicative person, or one that while communicative, is curled into a ball and unable to participate in life except for verbal discourse with those who have the time for him or her. Years ago, some of what we now have to offer wasn't available and many people died a more natural death, there were fewer nursing facilities, fewer vegetative and contracted people lying in beds or wheelchairs. Now, there are more and more people who live this way because we have the technology to keep people alive and many people want to be kept alive no matter the consequences. They are okay with not being well. I should be okay with it. I'm not. I can understand it but I wonder what it is that makes people unable to call it quits. Is it fear of the unknown? Is it a personality of dependence and entitlement that some people are okay with requiring someone to take care of them? Is it tenacity? Is it appreciation of life whatever the physical or mental state? And what it is with the medical profession who says it's not okay to call it quits. Who is alarmed if someone wants to die, states that they don't care anymore and have had enough.
I consider the state of my 91 year old grandmother. It will be a terribly sad day when she dies. She has been the matriarch of the family. Her piano playing has been a hallmark of family gatherings and of community goings on for over 60 years. She is now mostly deaf. She cannot see. She sees people and things that aren't there due to Lewey Body dementia or Charles Bonet syndrome, or a conglomeration of both. She is frail and needs assistance for almost every aspect of her daily life. She can't really participate in therapy to get stronger at this point because she can't see and is so afraid of falling, is so weak at this point that it is a monumental effort to have her do anything beyond sit in her chair day after day. This is not my grandmother. She has expressed that she is not okay with this state of affairs but she is still here. Her doctor continues to prescribe her medication for her high blood pressure, her eyes, and whatever else she takes medication for. The meds aren't going to make her better. Are they keeping her alive? Are they prolonging the inevitable and possibly the biggest blessing for her? I wonder. She is still brought to the doctor, her meds are still filled, and we are still concerned about her blood pressure. Should we be? Why are we not more concerned with the fact that she has lost her personhood, her independence, her zest for life. That she is subsisting in a grey world of uncertainty as she shuffles, assisted, to the bathroom where she is naked in front of strangers.
Limiting care is such a grey area. People, as in every other aspect of their lives, are so different from each other, choose vastly different ways of existing. It is hard to know when to applaude or jeer at the tenacity of ill people who still want to live despite their illnesses. It's hard to know whether to explore the reasons behind their seemingly poor decisions to continue or boost them up psychologically for the next medical onslaught. I have no answers. I must be respectful of their decisions. But it's hard sometimes, and it's disheartening to see continual human suffering that the person or their family has chosen. That I think is the hardest part. That the perceived suffering has been a choice someone made. A choice to be in the world no matter the cost.
So here are my qualifications; I have an AA degree, a BSW (which is a four year degree), a MSW (which is indeed a masters level degree), and a LCSW (licensed clinical social worker) which cost me several hundred dollars, 3000 hours post graduate work, 100 hours face to face supervised work, and a humongous test, to acquire. It also costs me $150 per year to renew, although for nurses and other professional disciplines that make a ton more than me only have to pay about $50 a year (doctors I know you have to pay lots more). I have over ten years of experience in social work and have been in the medical field even longer than that so I do know the difference between my butt and my elbow.
Pet peeve number one: a brand new nurse out of a RN, not BSN program makes more than I do.
Pet peeve number two: I am not here to do babysitting for patients children because I am a social worker, love children, and have nothing better to do.
Pet peeve number three: Just because you do not know what I do does not mean that I am any less busy than you are and therefore should be given the tasks that you do not want to do because you are "too busy."
Pet peeve number four: Because you are confused about what a social worker does does not mean that you get angry at me for not agreeing to babysit, get taxi's for patients and find a homeless person a non-existent pair of shoes.
Pet peeve number five: I do have more peeves but the above four are the ones that really annoy me.
Now, I understand that there are tasks in my daily job description that are mundane which I will happily do. I understand that in the course of my day I do plenty with patients that is not necessarily at a master's level. However, given my education and experience and the fact that I actually do a bang up job of what I do every single day I am here, do not talk to me as though I am your personal gopher or that I do not know what I am talking about.
It appears that being a knocked up collegue of those in the medical profession gives my esteemed collegues the license to comment on the size of my abdomen, suggest that perhaps my dates are wrong because I have had too much sex and have no idea when I may have become pregnant, suggest that when I am short of breath that I have a PE and need a ddimer drawn and a chest x-ray. Turns out I now have asthma due to the delightful flora and fauna that are drifting about this time of year. I am now on 10mg of Singular thank you very much. At this time I am not going to die of a PE. Praise God.
It has been difficult I must say to carry out my duties as the ED social worker in what has been an incredibly busy summer while maintaining adequate hydration and nutrition and emptying my bladder at frequent intervals. I am appreciative of the leeway by collegues have given me in the endless line at the bathroom. I am appreciative of my nurse friends who have said they will throw me a huge baby shower. I need one! I am forever grateful.
What makes it more difficult however are comments about my "baby's daddy", being "knocked up", being too big for gestational age, and "you look tired". Which of course I am. Guess it's not enough to be the mom of two girls at home, have a stressful job, being an "elderly multigravida", not being able to get any extra sleep and having my partner away a good share of the time. I love medicine, I enjoy my job for the most part, I appreciate my collegues, I really do, but they are more than welcome to be supportive and extra welcome to keep their less supportive comments to themselves.
I just found out you are still alive. It's been several months since I saw you last and I feared you had finally succumed to a life of heroin.
I've lost count on how many times I sent you to rehab. I remember the time you came in with pneumonia, were filthy, dope sick and desperately needed clothes and a wash and I did that for you and you thanked me.
I don't know why you out of so many others sit on my brain, and why I continue to help you. I really don't.
Maybe it's because one time I saw you, you were clean. Your eyes were bright, your hair was washed and combed, you had some meat on your bones and I felt hope.
Hope. That must be what keeps me coming back to this place. To turn the corner and see you there looking good. To turn the corner and see you looking bad but knowing somehow you are the reason I keep plugging away. To see if your still here.
They pace, they sit, they smoke, they fall asleep, all waiting.....waiting for news. They call and call, and leave messages. They give directions to the hospital. They stand up when you walk in the room, their faces are hopeful or tear stained.
And I don't have the answers. I rarely do. I wish I did but it's not proper. I must wait myself for the Doctor, the one in charge, the one who has the labwork, the CT results, the diagnosis. I wait, go back to the patient, go back to the family, walk the well worn path between the trauma rooms and the family rooms.
"They are still with him now." "You can see him soon" "We'll have more information soon." But I know. I know that they are already dead. I know that their injuries will bring death. I know that their injuries will make them disabled. Or I know that they are completely fine but the Doctor is tied up and can't see the family yet. Or they are completely fine and the family won't believe it until they talk to the Doctor. What I have told them isn't good enough. I am just the messenger.
And so I lie. Or tell half truths. Or make something up. Or reminisce with them. "Tell me about your loved one."
So we wait together. Or I wait exasperated. "can you please talk to the family?" "please talk to them, they've been waiting for a half an hour." "Can I tell them something until you have a minute?"
And then the Doctors come and they tell and they leave and I am left with the family and the result of the news. And I wait for the family to absorb the news. To stop sobbing so I can tell them they can see them.
Then they wait with him. Wait for death, wait for life. Waiting.............
So we are all aware of the folks who come to the ER for three hots and a cot, maybe some percocet, a new pair of socks, if they are lucky a pair of hospital pants. I am frequently asked to provide rides home to folks who lack the foresight to determine how they might get home once they take the ride in the ambulance for whatever non-emergent complaint they might have. The ER can become a haven for the homeless, the abused, and the otherwise non-coping folks of the city. Many have state aid, recently there are more who don't and won't qualify.
We no longer have free prescription assistance at the hospital, the new health program in the state can't be enrolled in unless you haven't had insurance for over six months, which really doesn't make a whole hell of a lot of sense. In order to qualify for medicaid you have to be incredibly poor, you also often have to be on disability.
Which brings me to another issue. Why is it that those who have had asthma since they were a child but are on medication and it is well controlled get social security disability and medicaid but my mother who had a shoulder injury which left her unable to play the piano which was her life's work, had a hip replacement, and is nearing 65 can't get it because she is not disabled enough. She can't lift her arm at this point above her waist. She still tries to teach but it's pretty hard and discouraging. She doesn't qualify for health insurance because of her pre-existing conditions, she makes too much money for Medicaid because she is actually trying to work for a living. Our health system is broken.
People with state entitlements use the ED as primary care and yell at staff when they aren't seen immediately, don't get lunch while waiting to be seen for a sore throat, and also want a free ride home because when they called the ambulance for their sore throat it didn't occur to them they wouldn't have a ride home. People without state entitlements also use the ED as primary care because they won't be required to pay. They will also frequently get free socks, free lunch, and maybe some free clothes along with free medical care because they will ignore the bills and collection ageny letters that will inevitably come.
There are clinics that operate on a sliding fee scale, or if you are too poor, will care for you for almost nothing, will help you sign up for state programs and help you with meds. There is also a free mobile care clinic that provides meds for chronic conditions for free, will provide care for free.
But it's easier although less pleasant to take a free ride to an emergency department, wait for several hours, abuse the staff, not follow up, be non-compliant, and possibly end up in more dire straits because of it.
The system is broken and nobody want to take responsibility for it.
Okay, so I am supposed to be the bleeding heart of the department, the one who always feels sorry for folks. I really can't say that I am until it comes to this subject. Being naked.
So this somewhat larger woman is involved in a car accident, she is covered in lacerations and abrasions, she is put on a board with a collar and her clothes are cut off and she is now completely exposed to the ten to fifteen people in the room. Now I realize that the patient must be exposed to determine injury but then can't we throw a towel over her privates? Come on people! Can you have the slightest bit of empathy? Do they really need to continue to lie there at the mercy of others completely nude? So I walk in and stick a towel over her lower half and upper half which earns me points with the nurse and deducts points with the doctor. Sometimes I ask and sometimes I don't. To me it is pretty clear that when half the huge population of medical folks that were there at the start have left that the person is going to live and the rest is just x-rays and lab draws. So the person can now be covered.
How about the demented folks in rooms with their butts hanging out of their johnnies, completely oblivious to the fact? When we go by can we cover them up? How about the female patient having a pelvic exam and having every Tom Dick and Harry walk in like it's no big deal? Or the intoxicated frequent patron who has somehow forgotten his clothing and has a blanket that keeps falling off? I firmly believe that whatever the complaint, the frequency of care in the department that each person should be in some way covered. No exceptions. Besides, there are children in the department who don't need to be exposed to the exposed.
A pet peeve of mine but also a testament to maintaining patient privacy and dignity. If we can't do this one thing I hate to think what else we cannot do.
I don't know you, or I've known you for minutes, or hours but I know things about you that most wouldn't know after years of knowing you. I wiped your tears, I held you, I brought you ice when you punched a wall in anger and grief. You are my patients, you are my families, you are those who have lost the loves of your life, fathers, mothers, wives, husbands, children, lovers...............and you grieve, sob, so many ways you show your despair. I am there to see it all. I sit with your emotion, I sit with you when you crawl on the floor, when you curl into a ball, when you sit with your head in your hands and sob, when you sit and say nothing at all. I caught you when you fell, I held you when you needed something to hold onto and most of you won't remember my name and that's okay. Some names I remember, some I don't, most of all I remember the breaking of hearts, the sighs, the looks of disbelief and the tears that though bitter and full of fear will with time, bring healing and mend the broken heart.
It is the poised and well-dressed women who slumps to the floor, heels discarded, rocking back and forth, wailing, knowing that her son was taken from her too soon.
It is the man, late in life who sobs, who slams his hand on the chair, who then becomes overcome and crawls like a child knowing his wife, who has suffered will find peace without him.
It is the child who is silent, whose tears well but do not spill, who kisses her daddy’s hand and tells him she will see him again someday.
It is the daughter who smiles, who reminisces, who understands that her father would have wanted to die quickly doing what he loved.
The son can only punch the wall and leave a mark, he has no words but anger for his pain. He wants revenge, he wants to know who killed his mother, where is the sick bastard, I’ll kill him, I’ll kill him, he says, over and over.
It is the wife who is silent, she feels relief. She is finally free to be herself. She is no longer the victim of his tirades, she survived and he didn’t. But the pain is still there, so many things unsaid, so many holes to be mended.
It is the friend, sobbing in the corner, unsure of where to be, who knows more than the family, who can’t share it, won’t share it, will hold the secrets in their heart. Whose pain will be more acute because the phone won’t ring anymore and there will be no more secrets to tell.
It is the lover, the partner, who wasn’t known until now. They pretend to be "just a good friend", but their heart is torn in two. Tears roll unchecked, their body shakes with sobs yet, no one else in the room knows why, and they won’t be able to say, at least not yet, perhaps never, maybe someday.
It is the husband who cries in fear, wondering how he will now care for the children alone. She did everything, she was his soulmate, they just celebrated their 7th anniversary yesterday. Why? She was fine.
The family can only stare in horror and disbelief. They huddle together like animals in a storm, and they are in a storm, the storm of grief, the storm of the unthinkable happening today, tonight, this unbelievable day. What will we do now? What? We don’t understand.
The faces of grief are never alike, they wail, they seethe, they smile, they are shocked. They are tearful, serene, and beyond words. They eventually take on a recognizable appearance that others are more comfortable with though the heart and soul looks for recognition in it’s weakened state. The body seeks relief, the mind continually questions the rationality of death, the taking of one who is loved, one who is hated, one who had no one but somehow still touches us. It is in touching us that we begin the search for the meaning of that which was taken, to start answering the questions we never thought to ask, to explore the topics never put into words. Death touches the face and reshapes it, each person a different mask, a mask that in time can seek reshaping into beauty or remain contorted in pain.
Your face is wrinkled, unlike a child, yet your body is soft, plump, curled into itself, wanting touch.
You are confused, fearful, grabbing hands as they walk by, dependent, sometimes pleasant and trusting, sometimes angry and defensive. The face is questioning, hopeful, eager to find kindness.
We have talked about your life with you, conjuring images of your childhood, your early years, your marriage to your sweetheart, it has been over fifty years and your face still softens with their name, your eyes glisten with memories.
I have held your wrinkled hands, I have smoothed your hair, I have dried your tears and listened when you shouted, when you railed against the world, against God, angry that you can no longer understand what is happening to you, why you are here in this noise, in this pain, in this unfamiliar and foreboding place.
How long has it been since you have felt a caress, since you have heard "I love you" from those you love? Do you dream of kisses from long ago? Feel your lovers arms about you, holding you tight, loving you? Do you feel your child's soft body in your arms, do you hear their cries in the night, but not remember their names?
I wonder at those who are silent, whose faces are blank, whose bodies are curled from want of use. I wonder at the thoughts inside. Are they already in places beyond, though their body continues to breathe? It is a mystery, it brings tears to my eyes. I want to hold them and remind them that they were once alive.
You are what keeps me awake at night. Your faces and grief causes a lump in my throat. Yet you also bring joy to me as we talk of your past and your wishes for life after your body has ceased to live.
I wish you peace, I will hold your hands, and sometimes I will kiss your face and put my arms around you because I know that you yearn for touch and will find solace in the stranger that I am.
Tell me your stories because I will remember them and hold them in my heart and share them with those who care for you because it gives you a face.
You have returned to childhood and perhaps that is merciful. May you find peace in your memories and find joy at the end.