Sounding board__________________
Pain control survey results: Not good Joy Ufema, RN, MS
The results are in! Things still don’t look good. My fears that hospice patients are not receiving adequate pain management have not abated. The January/February 1991 edition of the American Journal of Hospice and Palliative Care contained a pain control survey. It was an addendum to an article regarding my outrage that many programs have inadequate pain protocol for their patients. Only 2 percent of the subscribers responded. I find that upsetting (and perhaps it proves my point). Perhaps hospice programs are “over-surveyed,” but it seems to me that pain management is an area that might be easy to report ifit is simplypart ofthe every day workings. I’m also disconcerted that only one respondent took issue with me, stating that paincontrol is the primary concern of their hospice. Good! —
Joy Ufema, RN, MS. is Founder of York House (AIDS hospice), York, Pennsylvania.
But whyweren’t there more replies to the survey, and more pithy letters telling me how well programs are doing? I’d like to see the assertiveness that is the basic component of patient advocacy come burning through the mail. Aren’t there more hospices willing and able to prove me wrong? Those who did submitinformation reflected a genuine attempt and some success stories which provided specific information on how patients are assessed and treated. The geographic spread covered the country. Most of the individuals completing the survey were in direct patient care positions. (Two were Medical Directors and one was a Bereavement Coordinator.) Results were split 50/50 regarding actual pain protocol. However, over 4 percenthad a designated pain specialist on staff, usually the medical director. There were several surveys claiming to have a painspecialistbut no pain
control protocol. As far as evaluating pain, the majority of respondents did so on a “case-by-case’ basis with heavy Quality Assurance influence. (Respondent had one QA meeting annually.) I was impressed that one hospice program actually has a pain team and that every patient was assessed daily. Unfortunately, one responder stated they used the “0 5” scale, but thenhad no access to stronger medication if the patient said he had severe pain! Yettwo more respondents said their means of pain evaluation was gleaned from “satisfaction” surveys after the patient’s death! When asked about favoiing certification of paincontrolcare, overhalfreplied “yes” while one fourth said “no,” there were too many regulations already. One medical director felt it would interfere with the “doctor-patient” relationship. Approximately a half dozen were undecided about certification. Those who favored such a move felt it could best be accomplished through
The American Journal of Hospice & Palliative Care January/February 1992 Downloaded from ajh.sagepub.com at NORTH DAKOTA STATE UNIV LIB on May 20, 2015
-
11
workshop training and testing, ultimately resulting in a “diploma” of sorts. (I favor this route.) Again, about a halfdozen felt it was solely the medical director’s role. (I guess these exhausted physicians would see patients all day long.) Regarding the question of adequate training and advice, the results were evenly split. Most acknowledged information was available but felt perhaps it was under-utilized. A few said information was inaccessible. (I don’t understand how they could be readers of this journal and make that observation.) Lastly, suggestions for improving pain control practices within hospice ranged from “more workshops” to “required protocols.” One coordinator suggested that hospices in every state be required to have Medicare licensure. (That’s precisely how we got in the trouble we’re in: with nurses making “hurry-up” visits.) The most disconcerting comment spoke of several attending physicians and a few hospice nurses who expressed fear of addiction in their patients. (I’m still reeling over that one!) So, what does all of this mean and where are we headed? The results reflect that there are some fine programs inthe United States, doing all the things a hospice is supposed to do. Conversely, there are programs calling themselves hospice, but not providing the basic tenet of hospice philosophy keeping the patient’s physical pain managed so he can better process the other “pains” of dying. It is my opinion that we didn’t need to do the survey to glean this information. However, I am alarmed. The results, though not surprising, disturb me. Quietly and all too consistently, they shout a warning: That after 20 years, this might be as good as it gets~J —
Letter to the editor____________________________ To the editor: I would like to respond to Joy Ufema’s article in the January/February 1991 issue of The American Journal of Hospice and Palliative Care: “It takes more than knowledge: It takes assertiveness.” I had first written this in the white heat of anger, but had put it aside, being caught up in the day to day concerns ofthe home care hospice nurse. Now in the lull between busy work schedules, I again have found time to reconsider what I wrote back in January and find that the feelings are still true, even though the fever is mellowed. I agree with the title. It does take assertiveness. Nurses haven’t been trained to be assertive though many have learned to be in the interest of their patients and as patient advocates. But too many physicians are not ready for assertive nurses. They are threatened by nurses who obviously “know too much” since they are better versed in caring for dying patients. But even that answer is too simple. The problem is the entire western health care structure. It is too top heavy and sluggish to move with the times or recognize that human beings are indeed finite. They can’t admit that the death rate is still 100 percent and has been since the beginning of time. Ifhospice nurses are too assertive (better known as pushy) then physicians get threatened and will not refer patients to hospice. Then what are they going to do? And where will we be? I take great exception to the statement that hospitalized patients fare better than home care patients. Maybe they do in your fancy highly equipped university hospital but out in the real world, I would much rather be a patient in my own home relying on my “weary spouse” than stuck in the corner ofa hospital floor where the nurses can forget or ignore my verbal cries for help or just not come in to see first hand the agony written on my face if they even know how to translate it. Professional caregivers have been brain washed for too many years about being careful not to “give too much” or watching out for the “clock watchers” or not “feeding into an addition.” Families are much easier to educate to understand the logic of around the clock dosing and giving the medicine before the pain occurs so it will take less to control it. They don’t have to be deprogrammed first. I can recountany number of instances where my patients got totally out of control because they had to be admitted to the hospital for some reason otherthan their terminal condition. It was only when they returned home that we could again achieve good pain control. I believe that the suggestion that every hospice needs a pain specialist is redundant. Hospice nurses are the pain management specialists. It’s what we do. It’s who we are. I find it insulting that Joy Ufema avers that hospice home nurses are not doing their jobs. I challenge the results of the National Hospice study that claims that hospital patients are in no less pain than our home care patients. Neither Venirafredda nor NHO asked usabout pain control for our patients. I found the tone of the article to be sarcastic and disappointing. I expected a nationally recognized leader in hospice care to be more positive in her approach and to promote education in the area of pain management. I expected her to applaud the struggling efforts of hospice professionals in the war against ignorance. I expected support for their efforts to provide optimum care fortheir patients, whether they werein the hospital or had thecommon sense to stay in their own homes. Iexpected Joy Ufema to call forth the expertise of hospice nurses to improve the knowledge and practice of other healthcare workers. Instead she has used her forum to stab us in the backand discourage our efforts to obtain adequate information for the care of our patients. Instead of calling for further education of physicians without whose cooperation we can accomplish nothing, the article blamed nurses for not being assertive enough. I’m disappointed. I think Joy Ufema needs to rethink her position and get the facts straight. I invite her to come and visit us to see how things are done in the real world before she sits in judgement of our services. I think Joy Ufema owes us an apology, using the same forum she used to insult us. Very sincerely, Sister Margaret M. Jacobs, RN, BSN Patient Care Coordinator Hospice of Big Sandy, Inc. Paintsvile, KY
The American Journal ofHospice & Paffiative Care January/February 1992
Downloaded from ajh.sagepub.com at NORTH DAKOTA STATE UNIV LIB on May 20, 2015
Pain control survey results: Not good Joy Ufema, RN, MS
The results are in! Things still don’t look good. My fears that hospice patients are not receiving adequate pain management have not abated. The January/February 1991 edition of the American Journal of Hospice and Palliative Care contained a pain control survey. It was an addendum to an article regarding my outrage that many programs have inadequate pain protocol for their patients. Only 2 percent of the subscribers responded. I find that upsetting (and perhaps it proves my point). Perhaps hospice programs are “over-surveyed,” but it seems to me that pain management is an area that might be easy to report ifit is simplypart ofthe every day workings. I’m also disconcerted that only one respondent took issue with me, stating that paincontrol is the primary concern of their hospice. Good! —
Joy Ufema, RN, MS. is Founder of York House (AIDS hospice), York, Pennsylvania.
But whyweren’t there more replies to the survey, and more pithy letters telling me how well programs are doing? I’d like to see the assertiveness that is the basic component of patient advocacy come burning through the mail. Aren’t there more hospices willing and able to prove me wrong? Those who did submitinformation reflected a genuine attempt and some success stories which provided specific information on how patients are assessed and treated. The geographic spread covered the country. Most of the individuals completing the survey were in direct patient care positions. (Two were Medical Directors and one was a Bereavement Coordinator.) Results were split 50/50 regarding actual pain protocol. However, over 4 percenthad a designated pain specialist on staff, usually the medical director. There were several surveys claiming to have a painspecialistbut no pain
control protocol. As far as evaluating pain, the majority of respondents did so on a “case-by-case’ basis with heavy Quality Assurance influence. (Respondent had one QA meeting annually.) I was impressed that one hospice program actually has a pain team and that every patient was assessed daily. Unfortunately, one responder stated they used the “0 5” scale, but thenhad no access to stronger medication if the patient said he had severe pain! Yettwo more respondents said their means of pain evaluation was gleaned from “satisfaction” surveys after the patient’s death! When asked about favoiing certification of paincontrolcare, overhalfreplied “yes” while one fourth said “no,” there were too many regulations already. One medical director felt it would interfere with the “doctor-patient” relationship. Approximately a half dozen were undecided about certification. Those who favored such a move felt it could best be accomplished through
The American Journal of Hospice & Palliative Care January/February 1992 Downloaded from ajh.sagepub.com at NORTH DAKOTA STATE UNIV LIB on May 20, 2015
-
11
workshop training and testing, ultimately resulting in a “diploma” of sorts. (I favor this route.) Again, about a halfdozen felt it was solely the medical director’s role. (I guess these exhausted physicians would see patients all day long.) Regarding the question of adequate training and advice, the results were evenly split. Most acknowledged information was available but felt perhaps it was under-utilized. A few said information was inaccessible. (I don’t understand how they could be readers of this journal and make that observation.) Lastly, suggestions for improving pain control practices within hospice ranged from “more workshops” to “required protocols.” One coordinator suggested that hospices in every state be required to have Medicare licensure. (That’s precisely how we got in the trouble we’re in: with nurses making “hurry-up” visits.) The most disconcerting comment spoke of several attending physicians and a few hospice nurses who expressed fear of addiction in their patients. (I’m still reeling over that one!) So, what does all of this mean and where are we headed? The results reflect that there are some fine programs inthe United States, doing all the things a hospice is supposed to do. Conversely, there are programs calling themselves hospice, but not providing the basic tenet of hospice philosophy keeping the patient’s physical pain managed so he can better process the other “pains” of dying. It is my opinion that we didn’t need to do the survey to glean this information. However, I am alarmed. The results, though not surprising, disturb me. Quietly and all too consistently, they shout a warning: That after 20 years, this might be as good as it gets~J —
Letter to the editor____________________________ To the editor: I would like to respond to Joy Ufema’s article in the January/February 1991 issue of The American Journal of Hospice and Palliative Care: “It takes more than knowledge: It takes assertiveness.” I had first written this in the white heat of anger, but had put it aside, being caught up in the day to day concerns ofthe home care hospice nurse. Now in the lull between busy work schedules, I again have found time to reconsider what I wrote back in January and find that the feelings are still true, even though the fever is mellowed. I agree with the title. It does take assertiveness. Nurses haven’t been trained to be assertive though many have learned to be in the interest of their patients and as patient advocates. But too many physicians are not ready for assertive nurses. They are threatened by nurses who obviously “know too much” since they are better versed in caring for dying patients. But even that answer is too simple. The problem is the entire western health care structure. It is too top heavy and sluggish to move with the times or recognize that human beings are indeed finite. They can’t admit that the death rate is still 100 percent and has been since the beginning of time. Ifhospice nurses are too assertive (better known as pushy) then physicians get threatened and will not refer patients to hospice. Then what are they going to do? And where will we be? I take great exception to the statement that hospitalized patients fare better than home care patients. Maybe they do in your fancy highly equipped university hospital but out in the real world, I would much rather be a patient in my own home relying on my “weary spouse” than stuck in the corner ofa hospital floor where the nurses can forget or ignore my verbal cries for help or just not come in to see first hand the agony written on my face if they even know how to translate it. Professional caregivers have been brain washed for too many years about being careful not to “give too much” or watching out for the “clock watchers” or not “feeding into an addition.” Families are much easier to educate to understand the logic of around the clock dosing and giving the medicine before the pain occurs so it will take less to control it. They don’t have to be deprogrammed first. I can recountany number of instances where my patients got totally out of control because they had to be admitted to the hospital for some reason otherthan their terminal condition. It was only when they returned home that we could again achieve good pain control. I believe that the suggestion that every hospice needs a pain specialist is redundant. Hospice nurses are the pain management specialists. It’s what we do. It’s who we are. I find it insulting that Joy Ufema avers that hospice home nurses are not doing their jobs. I challenge the results of the National Hospice study that claims that hospital patients are in no less pain than our home care patients. Neither Venirafredda nor NHO asked usabout pain control for our patients. I found the tone of the article to be sarcastic and disappointing. I expected a nationally recognized leader in hospice care to be more positive in her approach and to promote education in the area of pain management. I expected her to applaud the struggling efforts of hospice professionals in the war against ignorance. I expected support for their efforts to provide optimum care fortheir patients, whether they werein the hospital or had thecommon sense to stay in their own homes. Iexpected Joy Ufema to call forth the expertise of hospice nurses to improve the knowledge and practice of other healthcare workers. Instead she has used her forum to stab us in the backand discourage our efforts to obtain adequate information for the care of our patients. Instead of calling for further education of physicians without whose cooperation we can accomplish nothing, the article blamed nurses for not being assertive enough. I’m disappointed. I think Joy Ufema needs to rethink her position and get the facts straight. I invite her to come and visit us to see how things are done in the real world before she sits in judgement of our services. I think Joy Ufema owes us an apology, using the same forum she used to insult us. Very sincerely, Sister Margaret M. Jacobs, RN, BSN Patient Care Coordinator Hospice of Big Sandy, Inc. Paintsvile, KY
The American Journal ofHospice & Paffiative Care January/February 1992
Downloaded from ajh.sagepub.com at NORTH DAKOTA STATE UNIV LIB on May 20, 2015
