Next steps in child protection, policy and practice. a perspective from england

Thank you for inviting me to speak to you today. I am very pleased to be able to do so at such an important time for all of you who are involved in children's services in Northern Ireland. Today I want to share with you the key points of the Department of Health's strategy for taking forward the refocusing debate in England and some of the ways in which change has been implemented by local child care agencies. I will not address die Welsh context as I am not familiar with it in any detail. I do know, however, that agencies there have been working hard to address these issues at a time of both change and stress as they have been involved in local government reorganisation, and the Clwyd Inquiry is ongoing.     

Jacob and the preacher: Conversations in context,part II—Jacob talks back

Freeman and the Preacher showed me the story Freeman wrote about the first time me and the Preacher met. I thought it was kind of neat, but there was some things I thought was different. So Freeman said I should tell you the same story from my point of view. I told it to him, actually, and he put it on paper because I still ain't too good at this writing thing, but he and the Preacher are teaching me how to write. I think I'll get better as time goes on. The Preacher, he says I have what's called a “natural ability.” Me. I don't know about that. Anyway, I told my side to Freeman and he wrote it. I read it and I think it's okay, you know. It ain't exactly what I said, but he said it has to be this way so other people can understand it. Like he had to take out some of the language so people don't get turned off. He's okay. I don't think he'll mess with me. Anyway, he said maybe you'd be interested and maybe you wouldn't. Sort of like life, eh? So here it is, Jacob and the Preacher from Jacob's point of view. I ain't as good at this as Freeman or the Preacher, so I just told the story. The talk that the Preacher said happened was real and everything, so I thought I would just tell you what was going on for me when the talk was going on. Freeman said that's what you wanted to know anyway. I guess you know that when me and the Preacher first met, I didn't know all this was going on inside of me. It's only since he has been helping me to be “in touch with myself” that I know that there is always all kinds of stuff going on inside. I'm still not real sure I like knowing this but he says it gets to be less of a problem with time. He says I'll read this in a few years and be surprised by how much I know. Sometimes I wonder, why bother, but he says I'll understand later. Maybe. Anyway, here it is. I would be interested in knowing whether you think it is okay. Like I said, I told it to Freeman and he wrote it out like this.     

The Untaught Lesson

My fellow physician and friend died from a rare type of cancer. She was a model for me in many respects. She showed me how to cope with a chronic disease together with a demanding professional life, yet she left me without any comfort or guidelines on how to contend with a terminal disease.This story is a reflection on my frustration and disappointment with my friend’s final choices that prevented us from processing our feelings and sharing our deepest thoughts. The story includes reflections and insights about our ability to understand and accept the preferences of patients and others close to us.I remember the very first time I saw you. I was a young intern in a robe heavily laden with work tools and books; you were a senior intern, petite, energetic, standing at the counter of the ambulatory hematologic department. Your voice was captivating: simultaneously funny, cynical, and confident. It would be the beginning of a long relationship with you as my mentor, my colleague, at times my physician, and my cherished friend.Your family and close friends called you “Tiny.” Having met you as an adult, I could never get used to that. You were larger than life.We both suffered from a chronic disease that we would often discuss. You always knew how to recognize the fact that we had a chronic disease as well as a determination to live with it as best as we were able.We gave birth to our first-born daughters at the same time. A few years later, you accompanied me to the operation room where I gave birth to my last son. Our friendship extended to our families and children, and was graced by several years of shared happiness. We were both living life in the fast lane.When I was 40-something and you were 40-something and a bit more, illness struck you. The tests revealed a strange and rare growth. We read the diagnosis in disbelief: adenocarcinoma of the biliary tract. Neither of us had ever met such a patient. We both voraciously read anything we could get our hands on about the disease and within a few hours summarized: “Pretty lousy, huh?” to which you added: “Only doctors get such exotic diagnoses.”You sought doctors who could treat the disease, requesting second and third opinions. Despite the horrible prognosis, you grasped onto any treatment that offered hope, anywhere in the world. You used your personal and professional connections to obtain experimental treatments and protocols were invented just for you. There was no previous experience in successfully treating your type of cancer. You were willing to suffer any side effect; you forewent every form of quality of life. You held onto life and onto the anger about life slipping out of your control.I secretly lost hope from the first moment. I identified with your denial in one respect only: as a mother of two adolescents, you had to do anything possible to get better. You weren’t allowed to die. It was inconceivable.Yet it was impossible to talk openly about these emotions. I longed to tell you: “Irene, you know how our patients sometimes hold onto life and it is our job to help them accept that death is approaching, and to tell them that maybe they should focus on pain relief and not recovery, and perhaps they should write their advance directives.…? Well, now that patient is you.” But I could not be so blunt. The topic was strictly taboo.I tried to listen to you. Just as you taught me to live with a chronic disease, I thought perhaps you would show me what to do when the battle fails and the disease overtakes unimaginable parts of the body. How does a brave, determined, realistic, and energetic woman like you (and me) deal with a fatal disease?If I had said the word “fatal” you would have kicked me out of your room and out of your life. There was no room for such conversation. You refused to discuss it, to recognize it. You refused to say goodbye. It was heartbreaking to watch you suffer. I supported transferring to palliative care, but you maintained your battle with the disease with all your might and effort.For what would be your last birthday I bought you a comic book about cancer (Cancer Made Me a Shallower Person¹—written and illustrated by Miriam Engelberg, a woman who used humor to work with her breast cancer, from which she eventually died). You always had a cynical sense of humor and you were one of the funniest people I knew, but “This time,” you said, “Ruth, you’ve crossed the limit. It’s like telling a Holocaust joke to a survivor.”I was at a loss of finding a way in, beyond the fortress of denial you imposed on yourself and your surroundings.We never said goodbye. You never told me what you wanted me to do after your death. You never asked me to take care of your husband and the children. You never said any concluding words, no words of farewell. In the past, we often spoke of the fact that as doctors when we accompanied patients to their death, we were in fact also rehearsing for our own death. You stopped training me during those final days when your impending death lingered in the air.On a pain-ridden Saturday, with just your husband at your side, you asked for a terminal sedation until your final rest. When I last saw you, you were already sedated, taking away my final chance for a closure you so adamantly wanted to avoid. You left me: a colleague, a friend, with a huge question mark and without any comfort or guidelines as to how to cope with a serious, fatal, hopeless illness.You could not face the uncontrollable truth, either with yourself or with me, leaving me to contend alone with my own unanswered questions and fears. Perhaps all of my experiences, insights, and resolutions will be of no avail when faced with the threat of losing my own life.Even as an experienced and empathic teacher, well aware of the dynamics between physician and patient, I realize I can never fully comprehend the factors that converge to ultimately determine a patient’s decisions. It is a complex fabric of culture, personality, conditions, community, and family, and there is no formula. I understand that my only remedy is to live life fully with open arms in the hope I will be wise enough to learn how to accept death when it appears.What I did learn from you, Irene, is about the unknown. I learned this: that I cannot assume that just because we were so similar in education, background, vocation, and coping with a chronic disease, that we would cope with death in the same way.You taught me by not teaching me. You taught me by leaving me alone to walk this untrodden path.Your guidance was in reflecting through your example how I would not like to cope with death, yet I fear that I am not immune to such a battle. And you taught me that I simply cannot know how I will cope should I face a similar situation—perhaps I too will fight until the end. Through this, you taught me about humility. There are unknown parts of ourselves that arise when we encounter unknown situations. This is part of what I now try to teach my students—that no matter what knowledge, values, perspectives we hold—to allow for the unknown to surprise us…mold us, shape us, impact us. This is what it truly means to be open to life and death: to agree to not know.Another untaught lesson you gave me was to learn to accept you unconditionally. Despite my deep disappointment and frustration at not being able to communicate openly with you, I accept this as your final lesson for me. Although I wanted to learn something else, perhaps this was exactly what I needed to learn.     

"The beginning of health is to know the disease"

There is public impatience over the pace of medical progress. Some say prevention and health have not been well served by the research community. Rather than devising extended investigations, scientists should apply now what we know now. Activists argue that, although research on a better understanding of disease must continue, a companion effort to develop strategies for health promotion and disease prevention should exist. The national effort should emphasize "health" and not "disease," as the names of the various NIH Institutes would imply. I disagree with that proposed direction of prevention research. It is not possible to divorce research on health from research on disease. Are the secrets of nature open to us through mere observation? Does not research require the perturbation of a system in order to make valid observations on the nature of that system? This, after all, is the nature of the scientific method. Disease is, itself, a perturbation of the state of health and it is through our research on disease that we learn how to prevent it. I believe that the National Institutes of Health does devote equal time to the study of health. For it is my thesis that by studying disease we have, in fact, given our total time to the study of health. "The beginning of health is to know the disease."     

How to survive as a basic term registrar

After trying a couple of other disciplines in medicine I have finally found the career that suits me. If you, like me, are interested in most things, enjoy meeting people and can't stand the smell of the average hospital ward, then general practice may really appeal. Unfortunately it is remarkably difficult to get experience in general practice without making a formal commitment to the training program, although some hospitals are now offering general practice rotations in the resident years, so your first day as a basic term registrar may be your first day ever in general practice. However, all prospective registrars should realise that - after medical school and hospital work - you probably know more than the average person. The strict training standards also mean that you will not be left unsupervised and will always have a senior doctor to call upon for advice.     

The false positive therapeutic trial

I do not know how many randomized clinical trials are positive, and how many of these trials are false positive. Still, I get the feeling that among the published ones that are positive, the majority is false positive. This article tells you how you can end a trial with a positive result even if your trial data do not or hardly support your favorite treatment. It deals with many deliberate and less deliberate biases, in the introduction, in the patients and methods section, in the results, and in the data interpretation and report.     

Systemic Therapy In A Cloture of Conflict: Developing A Therapeutic Conversation

'Religion's never mentioned here,' of course 'You know them by their eyes.' and hold your tongue 'One side's as bad as the other,' never worse. Christ, it's near time that some small leak was sprung.

In the great dykes the Dutchman made To dam the dangerous tide that followed Seamus. Yet for all this art and sedentary trade I am incapable. The famous

Northern reticence, the tight gag of place and times: yes, yes. of the 'wee six' I sing Where to be saved you only must save face and whatever you say, you say nothing.     

Jacob and the preacher: Conversations in context,part I

“You're the child care worker. Right?” “I'm the child care worker.” “So, wadda you want? I told the old lady I'd see you because she was freaking out. I got ten minutes. Talk.” “I want to buy you a cup of coffee and tell you how to save your life.” “I don't drink coffee.” “So? What about your life?” “What are you, a missionary from the local church? Or are you just an asshole?” “If I gotta make a choice, I'd rather be an asshole. What about you?” “You're fucking crazy, man. Me, I wouldn't make a choice like that.” “That's the problem. You're not making choices. That's why your life is going to hell. And that's why I'm here: to give you the choice of saving your life. Now. Do you want to do it or don't you?” “Are you paying attention here, preacher?” “Sorry, Jacob. I was thinking about your history.” “Who gives a shit? Pay attention. I was asking you if you wanted to go over to the park with me. I got something I gotta do.” “Is it safe for me?” “Sure. Don't worry. I'll look after you. Nobody's gonna touch you if you're with me. The only thing is, you gotta do what I tell you.” “I'm glad you're looking after me, son. It always feels good to know somebody's taking care of you.”     

Marketing metrics for medical practices

There's a saying by John Wanamaker who pontificated, "Half the money I spend on advertising is wasted; the trouble is, I don't know which half". Today you have opportunities to determine which parts of your marketing efforts are effective and what is wasted. However, you have to measure your marketing results. This article will discuss marketing metrics and how to use them to get the best bang for your marketing buck.     

Gaps, holes and change

The start of a new year can be a time for reflection of the past and consideration of the future. Whether or not you are a fan of new year resolutions, there is usually something that you want to change. This issue of Australian Family Physician considers gaps in practice. Sometimes as general practitioners we know that there is a gap; sometimes our patients know that there is a gap; and sometimes there is a gap but no-one recognises that one exists. Sometimes we go along thinking that what we are doing is evidence based, and then get an unpleasant surprise when asked to justify 'what we always do'!     

Top ten types of informed consent your supervisor never told you about

ABSTRACT

When we conduct ethically sound research, we know that any reason given by an informant to decline or withdraw participation is a legitimate reason. However, some situations can be averted or prevented, increasing your chance of getting the data that you need for your study. In order to be most successful, it might be good to know of some core pitfalls, that you may plummet into when trying to ensure a properly informed consent from your young participants. In this commentary I present my top ten most challenging examples (some experienced, some observed) related to informed consent — in ascending order by level of frustration.     

"Fire away": the opening sequence in general practice consultations

BACKGROUND: Proponents of recent models of the doctor-patient relationship, such as concordance and shared decision making, have emphasized mutuality rather than paternalism or consumerism. However, little attention has been paid so far to the ways in which this might actually be achieved. OBJECTIVES: The aims of this study were to establish whether there are any rules governing the opening sequence in general practice consultations, and to analyse the ways in which the observing or breaking of such rules contributes to the development of mutuality between patients and GPs. METHODS: The paper is based on a qualitative study of 62 patients consulting 20 GPs in 20 practices in the Midlands and Southeast of England. Consultations were audio recorded and transcribed; patients were interviewed before and after each consultation, and doctors were interviewed afterwards. Data were analysed using the sociological method of Conversation Analysis. The outcomes were participants' own understandings as demonstrated in their speech. RESULTS: A selection rule was identified whereby doctors choose between the questions "How are you?" and "What can I do for you?" to elicit patients' concerns. Deviations from this selection rule may be either repairable or strategic. Repairable deviance is based on misunderstanding between participants, and is resolved interactionally, usually by patients. Strategic deviance is the attempt by doctors to emphasize or de-emphasize certain aspects of their relationships with particular patients. Deviations from the rule which are not repaired lead to misalignment between participants. CONCLUSION: In relation to concordance, or shared decision making more generally, this analysis demonstrates that alignment or misalignment between participants will occur before any discussion about treatment options occurs. In cases of misalignment, concordance will be much harder to achieve. Mutuality is an achievement of both patients and doctors, and requires the active participation of patients.     

Ethnicity, health and primary care. Joe Kai (ed.). (229 pages, {pound}19.95.) Oxford University Press, 2003. ISBN 0-19-851573-1

"I believe that the line our society will take on this matteron how you are to people to whom you owe nothing is a signal.It is the critical signal that we give to our young and I hopeand pray that is a test that we shall not fail." Rabbi HugoGryn, Holocaust survivor

     

When to suspect interstitial cystitis

The symptom profile and comorbidities associated with this painful condition can make it difficult to diagnose--unless you know what to look for.     

Disaster preparedness

A natural disaster can be a frightening experience, where events are out of our control. Safety in such an emergency cannot be taken lightly. It is important to remember that safety is everyone's responsibility; plan ahead and know what you are to do! Review and rehearse emergency plans, know your work area and be prepared. Above all, stay calm. Your survival may depend on it!     

Rooting out health care discrimination: it's not just the right thing to do

Delivering high-quality health care equally to all patients may be a matter of common decency, but unfortunately, it's not always common practice. Discrimination in health care can open organizations to serious legal problems and cause patient satisfaction scores to plummet. This month's cover article details some concrete steps you can take to root out discrimination in your organization--whether you know you have a problem or simply suspect you might.     

Data: which states have it?

Data is king. Data is power. Data is the path to quality. Quality is what our patients want and deserve. Do you use your hospital data to its fullest potential? Do you compare your data to others? Are you improving? If not, you need to investigate ways to fully utilize your data.     

Using journal alerts to support your continuing professional development

Abstract

There are many ways to keep up to date with research that affects your role and personal development. You can regularly use PubMed or Scholar to find recent papers using keyword searches, you can rely on others to do the work for you with literature reviews, share the job with Journal clubs or using Journal alerts you can have the papers and research you want delivered to your inbox.     

The healing environment compendium

The Healthcare Forum Journal--with the help of our readers and Leland Kaiser--has compiled the following compendium of resources to serve as an aid to hospitals and other healthcare organizations in creating healing environment. This is a necessarily incomplete listing of facilities and programs. If you know of additional resources to help hospitals create healing environments, please let us know. We'll report further resources in upcoming issues.     

Putting patients at ease with conversation

Is talk really cheap? Definitely not. In fact, our ability to talk, that is to carry on pleasant conversations with others, is one of the most valuable gifts we have to offer. This article suggests that pleasant conversation is one of the best tools for making medical patients feel comfortable and enthusiastic about their appointments and treatment. It offers 10 general rules for good conversation with patients and provides samples of ineffective and effective questions to ask during a conversation. This article also illustrates good and bad ways to respond to compliments and offers suggestions to help you prepare for better conversations. It recommends ways you can use the talents of the expert conversationalists around you to improve your own conversation skills. Finally, this article suggests four tips for keeping your voice pleasant and appealing for conversations with your patients.