EDITORIALS
Development of a Palliative Care Protocol for Emergency Medical Services CPR is rarely successful in patients with pre-existing chronic illness; only 2% of these patients are discharged successfully after resuscitation. 1 Nevertheless, m a n y patients are now resuscitated in the hope that other interventions will reverse the inexorable progress of the underlying chronic condition. Families of dying patients often feel that we must do "everything possible," and, for fear of the legal consequences, many physicians believe that they must initiate CPR even if they know that the outlook is hopeless. 1 As a result, CPR is no longer considered an elective lifesaving procedure for selected patients with acute but reversible conditions but, in the opinion of many, has become the standard of care for many patients dying in a hospital or nursing home. However, the attitude is shifting. The m e d i c a l l i t e r a t u r e c o n t a i n s many excellent articles suggesting standards and an ethical approach to these difficult decisions. Bedell et al reported the restiscitation status of 521 of 528 patients who suffered cardiac arrest at Beth Israel Hospital during a 12-month period. 2 Three hundred eighty-nine of these patients (75%) had been designated do not resuscitate (DNR} prior to their death. The DNR group was more likely to be older, to have cancer, and to have an altered mental status. Blackhall reviewed the status of resuscitation, and he argued eloquently against Indiscriminate resuscitation3 In addition, numerous court cases seeking to limit or discontinue treatment have occurred; the hospice m o v e m e n t has grown rapidly; 37 states have passed "living will" legislation; and advocacy groups such as the Hemlock Society and the Society for the Right to Die encourage discussion of these issues. The first malpractice suit charging wrongful resuscitation has been filed in Ohio, and the popular news magazines are publishing thoughtful and comprehensive articles discussing these issues. 3 146/1383
In a recent survey of more than 500 individuals in Boston, 70% of them said they would decide against resuscitation if they were incompetent with a poor prognosis. 4 Most of the older literature has dealt with the resuscitation of patients in hospitals. More recently, there has been an emerging discussion of the appropriateness of attempting to resuscitate all patients in the prehospital setting. With the growth of the hospice movement, more patients are choosing to die at home; with the aging of the population, more people are receiving subacute and chronic care in long-term care facilities. Because of these factors, more Americans are dying outside of the hospital. 5 At the same time, advances in emergency medicine now permit advanced resuscitation in the field. Because of the acute nature of the illnesses and injuries seen in emergency medicine and the critical need for a rapid response, palliative care has not been emphasized and may be misunderstood by emergency providers. If emergency providers perceive their role only to be life saving, conflicts may arise between emergency medical services (EMS) and the patients they serve. Most jurisdictions have policies similar to Maryland. Specifically, emergency medical providers are required to resuscitate a patient in the field unless clearcut signs of irreversible death, rigor rnortis or decapitation, are present. This conflict is not merely theoretical. In one author's practice during a two-year period, there were five separate cases of inappropriate attempts to resuscitate terminal cancer patients by emergency medical technicians (EMTs) who were called for emergency transport for palliative needs or because of family panic. Two of these patients were in acute respiratory distress that could not be managed at home, one suffered a massive gastrointestinal bleed with which the family could not cope, one Annals of Emergency Medicine
collapsed at an outside laboratory, and one patient suffered a nonfatal, self-inflicted gunshot wound. Each of these patients had expressed the desire not to be resuscitated, and the EMTs were notified of this fact and of the terminal condition. Four of the patients were enrolled in a local hospice program. However, resuscitation was initiated against the patient's and physician's wishes because failure to begin CPR would have violated the EMTs' treatment protocols. Clearly, it was then and is now necessary to develop more mutually supportive ways for different specialties to interact. As a result of these issues, some local EMS jurisdictions have developed policies regarding the application of DNR orders in the field. As early as 1985, Minneapolis 6 and Anchorage 7 d e v e l o p e d p o l i c i e s l i m i t i n g attempted resuscitation for selected patients with a poor prognosis, and these early attempts were strongly s u p p o r t e d . 8 O p i n i o n s are h a r d l y unanimous, however, and an intense debate continues. 9q4 Nevertheless, a recent survey reported that seven states (including Maryland) and the District of Columbia now honor prehospital D N R orders. ~5 In six of these jurisdictions, the policy is in the form of a statewide protocol; in one state, it is in the form of an opinion of the attorney general; and in the last state, it is in the form of state law. In addition, 13 states allow or encourage the development of local policies. Only five states mandate resuscitation in all cases. 15 The remaining jurisdictions have no general policy and do not address local policies. Twenty-three states were reported to be addressing the issue or refining their current policies, a5 Thus, while the debate continues in the literature, it appears that the providers are forging ahead and developing their own policies regarding appropriate levels of care to be provided in the field. The American College of Emergency Physicians has 20:12 December 1991
EDITORIALS
FIGURE. Hospice/EMS protocol.
Hospice/EMS Palliative Care Protocol 1. INTRODUCTION A hospice patient is a parson with a terminal illness with a life e x p e n c t a n c y o f six months or less and who is under t h e c a r e of a H o s p i c e Program. Hospice care neither hastens nor prolongs death; it allows the dying process to occur naturally while pa]fiating the p a t i e n t to the highest degree possible. For the hospice patient, life support measures including CPR are inappropriate. H o s p i c e programs ua31continue to include educational programs for patients and families which discourage t he use of 911 for h o s p i c e patients. Occasionally, however, the EMS system is actirated for these patients. This leads to a conflict between the prehospital provider's duty to sustain life and the patient's expressed wish to die nat urally. The purpose of this document is to provide prehospital personnel with a medical protocol to follow when called to provide service to a clearly identified hospice patient. 2. CRITERIA FOR ACTIVATION OF THE HOSPICE/EMS PALLIATIVECARE PROTOCOL The Hospice/EMS Palliative Care Protocol will only be activated when officialdocumentation of hospice status and confirmatioti of patient identification is available. The protocol does not apply to vehicular crash scene~ior mass casualty incidents. In the absence of confirmed documentation and identification, the patient will be cared for according to standard protocols and t raining, 2.1 DOCUMENTATION An official, numbered, Hospice Network of Maryland (HNM) Documentation Card must be present. It will include: Patient Name, Age, Sex Driver's License Number (if available) Social Security Number Height, Eye Color, Hair Color, Race Next of Kin and Number Hospice Program and Number Physician Name and Number 2.2 IDENTIFICATION ]I the H N M Card is present then independent confirmation that the patient is the person referred to in the HNM Card must also be obtained. Identification may be confirmed by the patient (if conscious) or at least one of the following individuals who is present at the site: Doctor, Nurse Hospice Program Provider Q Family Member/Care Provider OR Personal Knowledge of Prehospital Provider (The name of the individual identifying the patient must be recorded in the runsbeet.) 3. LIMITEDPATIENT ASSESSMENT 3.I Vital Signs 3.2 History of Episode 3.2.1 Identify reason aid was requested. 3.3 Pertinent Medical History 3.3,1 Medical Problems and Conditions
3.3,2 Medications 3.3.3 Allergies 4.
SUPPORTIVE CARE FOR SYMPTOM CONTROL 4.1 Respiratory Distress 4.L1 Admialster oxygen at 50-100% concentration by mask without ventilatory assistance. 4.1,2 Suction as necessary.
also discussed these issues and published an excellent position paper regarding DNR guidelines for prehospital providers. ]6 In this discussion, we report a cooperative effort in Maryland to develop a palliative care protocol that a p p l i e s to all h o s p i c e p a t i e n t s throughout the state. We also report the results of a survey of the hospice providers after one year of operation of the protocol. Maryland has a statewide EMS system that is coordinated by the Mary20:12 December 1991
4.1.3 Position for comfort. 4.2 Bleeding, External 4.2.1 Standard treatment (direct pressure, dressing, etc.) 4.2.2 No MAST Trousers or IV's 4.3 Fractures: Immobilize in standard fashion. 4.4 Uncontrolled Pain or Other Symptoms (e.g. s e v e r e nausea) 4.4.1 Allow patient, family, or health care providers (other than the prehospital provider) to administar patient's prescribed medications. Such health care providers administering medications willn o t have to accompany the patient to the hospital. 4.5 Existing I.V.'s: IV lines may be in place and, if so, should be monitored. 5. INAPPROPRIATE CARE FOR A CONFIRMED HOSPICE PATIENT 5.1 Cardiac Monitoring 5.2 Initiation of IV Therapy 5.3 Medications - Except 4.4.1 5.4 CPR 5.5 [ntuhation (EOA or Endotracbeai) or Oral Pharyngeal Airway 5.6 MAST 5.7 Ventilatory Assistance 6. TRANSPORT 6.1 ALS intervention is not required; BLS transport is appropriate as needed. 6.2 Transport to patient's hospice hospital should be considered if feasible and practical. 7. COMMUNICATIONS No consultation is required, but the receMng hospital should be notified to expect the patient and prepare accordingly.
NOTE: Please place this page in your protocol manual. i HOSPICE N E I ~ O R K OF MARYLAND ~ F O O O O 0
pOCUMENTATIONCARD Name _
_
[3riv Lic# HI~ Eyos Next o~ mn
Age - -
Sex - -
. SSNHeir
Race
__.(
)
Hospice
.(
SEE
REVERSE
}
SIDE
Thispalianlis enroBedin the ~__ Hospice Programanddoesnot wishto be resuscitated If emergency hospitalization is cequirod the patient shoul¢~ be transported 1o if possible,andthe Hospice/EMS Palfialiva Can Pmlocol shouldbe followed.Thisidentificationshouldbe inde* pendenllyverilied Patient P~ys~ci.n
t s,onatureanae=, ) s,gn,~u,IaMd,le
land Institute for Emergency Medical Services Systems (MIEMSS). 17 In this program, p r e h o s p i t a l providers responding to a call for assistance provide basic life support (BLS) and advanced life support (ALS) as determined by treatment protocols. The ALS p r o t o c o l s are d e v e l o p e d by MIEMSS with statewide input and are approved by the Maryland Board of Physician Quality Assurance. The protocols mandate responses to defined s y m p t o m complexes and provide the most rapid response to lifeAnnals of Emergency Medicine
threatening emergencies. In Maryland, 37 distinct hospice programs now serve more than 3,000 patients annually, and the number of referrals continues to increase. Most of these hospice programs are affiliated with the Maryland State Hospice Network (MSHN). As early as 1981, preliminary discussions were held between representatives from MSHN and MIEMS8 regarding the management of hospice patients by EMS providers. Despite the terminal diseases exhibited by hospice patients, true emergencies do occur and require prompt and appropriate responses to palliate discomfort and prevent further disability. The sudden onset of severe respiratory distress, pathologic fractures, uncontrolled pain, or massive bleeding sometimes requires rapid transport to the hospice or support hospital for the comfort of the patient and family. This may require use of EMS for emergency transport, even though resuscitation is neither desired nor appropriate. At other times, and despite counselling by hospital providers and physicians, a family may be prepared for the death of a loved one, but the sight and sounds of imminent death are too much to tolerate, and EM8 is called in panic. As a result, the desires of the hospice patient or family and the services available from EMS may conflict. The patient has expressed the wish for palliative care only, but until recently the EMT was required to resuscitate the patient. D u r i n g i n i t i a l d i s c u s s i o n s , the EMS c o m m u n i t y e x p r e s s e d t h e i r concerns that hospice patients would overuse their services, that EMTs should not participate in the care of hospice patients because they were trained solely to save lives, and that misidentification of a hospice patient might result in legal liabilities. The hospice community argued that hospice patients were deserving of emergency services that are supported by the public and that the EMTs were obligated to provide palliative services in addition to resuscitation. In time, a basic philosophical difference 1384/147
EDITORIALS
between the two groups appeared to emerge. EMS representatives felt that not attempting to resuscitate a patient had negative implications that they were "failing" the patient by withholding something that could and perhaps should be done. Hospice representatives, on the other hand, felt that not resuscitating certain patients was a positive response because it represented delivery of the most appropriate level of care, which was in accord w i t h the p a t i e n t ' s wishes. In 1985, the Maryland legislature approved The Maryland Life-Sustaining Procedures Act. This legislation approved "living wills" and recognized the patient's right to refuse resuscitation and other aggressive interventions. 18 Because the EMT is unable to determine the validity of such an instrument in the field, the legislature excluded prehospital EMS providers from the requirements of the law. However, this exception created a dilemma: it acknowledged that terminal patients have the right to refuse resuscitation, but in an emergency the EMTs had to resuscitate the patient because the complex documents were not applicable in the field. The MSHN was concerned about these issues and argued against the EMS exclusion.19, ~0 The EMS community felt it was mandatory to protect the EMTs. Eventually, discussions among the authors led to an improved understanding of the needs and problems of both the hospice and EMS communities. A draft protocol was developed and submitted to a new committee of hospice and EMS providers, representatives from MIEMSS and MSHN, an ethicist, and an attorney. The revised protocol was circulated for review and comment by all interested parties and was submitted by MIEMSS to the Maryland Board of Medical Examiners. It was approved on March 17, 1988. The protocol addresses the problem of identification by requiring a two-step procedure (Figure). The patient or caregiver must first present the hospice identification card to the responding EMT. These cards are n u m b e r e d sequentially, available 148/1385
only through hospice members of MSHN, and issued w h e n the patient's desires and intent are clearly known by the physician and hospice provider. The identification of the patient is verified by the EMT on site. The identification procedure requires the EMT to review the hospice documentation card. The EMT must then confirm that the card correctly identifies the patient. This confirmation may be given by the patient, a member of the family, caregiver present, by the patient, or personal knowledge of the EMT. The palliative care protocol will be implemented only w h e n i d e n t i f i c a t i o n is thus confirmed. Maryland does not maintain a central registry of all hospice patients; authenticity of the identification card is confirmed by the EMT on site as detailed. The protocol mandates specific palliative interventions depending on presenting symptoms. After initial palliative treatment, the patient will be transported to the hospice or support hospital. Other emergency calls take priority, and the EMS personnel will transport to the nearest hospital if their services are needed elsewhere. The protocol applies only to patients enrolled in a licensed Maryland hospice and will be activated only if the patient is clearly identified by the p r o c e d u r e d e s c r i b e d above. If the EMT has any question regarding patient identification or the patient is involved in a mass casualty situation, the standard t r e a t m e n t protocols will apply. Successful implementation of this protocol depended on the education of EMTs and hospice patients and their families as to what represented a palliative emergency. The MSHN and MIEMSS therefore devoted six months to educational programs for both the hospice and EMS communities. Training for hospice families consists of discussions with hospice providers and the referring physician. Written materials describing the use of the hospice identification card are also provided by the hospice. The training discourages the immediate activation of the EMS system without a call to the hospice program first. When EMS is needed, services Annals of Emergency Medicine
are requested by dialing 911 anywhere in the state. There is no separate emergency number for hospice services, as is the case in some states. Special educational sessions were provided to EMTs and hospice providers, and explanatory documents concerning the use of the EMS are provided to all hospice patients at the time the card is issued. The protocol was activated on January 1, 1989. In 1990, a survey of all hospice providers was conducted to identify problems encountered and determine success of the program during the first year of operation. The survey was mailed to 32 hospice members of MSHN, and complete responses were received from 19 (59%). In all, 2,052 patients were enrolled in the responding programs during the year; 975 of them requested and received a hospice identification card (48%). One thousand five hundred twelve patients died during the year (74% of the total group), and 785 of the patients with a hospice identification card died (80%). Fifty-two percent of the patients who died had a hospice card, but only 32% of those patients who did not die had a card. This suggests that the hospice programs tended to issue cards to those patients who were more likely to die but were not always successful in making this prediction. One thousand seventy-seven hospice patients (52%) either refused or were not offered an identification card. Reasons for lack of acceptance of the card included the patient not understanding or being illiterate, the patient dying before it could be discussed, the hospice staff being uncomfortable with the discussion, or, most often, the patient or family being in denial, being overwhelmed by the events, or still hoping for a miracle. The EMS system received calls for only 52 of the 975 patients with an identification card (5%); virtually all of these calls were for transport to the hospice or support hospital because of palliative needs that could not be satisfied at home. Problems identified i n c l u d e d five episodes when families or private duty nurses called EMS without first checking 20:12 December 1991
EDITORIALS
with the hospice because of panic or fright and in w h o m EMS services were not actually required, occasional EMTs who were not familiar with the protocol, and difficulties in obtaining the required physician signatures from major medical centers. Respondents specifically noted that the protocol reassured patients and families that their wishes would be respected, relieved patients' fears of further painful interventions, gave ethical support to the EMTs, assisted the hospice staff in teaching patients and their families, reduced stress for the hospice workers, allowed transfer to acute care institutions for palliative care while maintaining the continuity of care, and prevented unpleasant memories of the death of a loved one. There have been areas of concern. Some EMTs were concerned regarding the identification process and feared that they would be sued for inappropriately "withholding care." In early discussions, we therefore considered the use of identification cards that would include a photograph of the patient. The proposal was event u a l l y r e j e c t e d b e c a u s e it w a s thought that a photograph would not be reliable because the hospice patient's physical appearance changes rapidly, the patient's inspection of his or her own picture in relation to current appearance might be inhUmanely painful, it might stigmatize the patient, and it would add unnecessary expense. Some EMTs felt that hospices would overuse these services and that use of the EMS was inappropriate for dying patients. Clearly, the program does not overtax the Maryland EMS s y s t e m because the 52 calls in 1989 represent only a tiny fraction of the 376,772 total EMS calls received during the same period. Conversely, some have argued that the palliative care protocol is not necessary because the numbers are so small. However, for those pa-
20:12 December 1991
tients who do receive this service, the program is very significant. Some hospice physicians have objected to the protocol's exclusion of IV analgesics. To provide for this, however, it would be necessary to use ALS services. It was also thought that because of the excellent palliative care offered by hospice, pain control would rarely present as the sole palliative care emergency. The protocol does allow caregivers present other than the EMT to administer the patient's routine pain medications by order of the attending physician. The major objection remains that the protocol is too restrictive because it applies only to patients enrolled in a formal hospice program. Clearly, this is the case because it was developed specifically for hospice patients to resolve the potential conflict between EMS and the hospice under current law in Maryland. We are sympathetic to nonhospice patients who do not desire resuscitation, but in this situation another mechanism for appropriate identification must be developed. MIEMSS and MSHN are monitoring the use of the protocol, and discussions continue regarding related issues such as DNR patients requiring transportation from chronic care facilities, and m a n a g e m e n t of the nonhospice, t e r m i n a l l y ill patient and other patients who do not wish to be resuscitated. The authors gratefully acknowledge the support and assistance of William Waterfield, MD; Robin DowelI, RN; Dottle Arnold, RN; and George Smith. P Gregory Rausch, MD Hospice of Frederick County Frederick, Maryland A m e e n I Ramzy, MD Maryland Institute for Emergency Medical Services System Baltimore
Annals of Emergency Medicine
1. Blackhall LJ: Must we always use CPR? N Engl J Med 1987;317:1281 1285. 2. Bedell SE, Pelle D, Maher PL, et al: Do-not-resuscitate orders for critically ill patients in the hospet al: Donot-resuscitate orders for critically ill patients in the hospital: How are they used and what is their impact? ]AMA 1986;256:233-237. 3. Buckley J, Creighton LL: How doctors decide, who shall live, who shall die. US News and World Report January 22, 1990, p 50-58. 4. Danis M, Southerland LI, Garrett JM, et al: A prospective study of advance directives for life-sustaining care. N Engl ] Med 1991;324:882-888. 5. Sager MA, Easterling DV~ Kindig DA, et ah Changes in the location of death after passage of Medicare's Prospective Payment System: A national study. N EngI J Med 1989;320:433-439. 6. Miles SH, Crimmins TJ: Orders to limit emergency treatment for an ambulance service in a large metropolitan area. JAMA 1985;254:525-527. 7. Marshall L: Resuscitating the terminally ill. f Emerg Med Serv 1985;10:24-28. 8. Haynes BE, Niemann JT: Letting go: DNR orders in prehospitaI care (editorial). JAMA 1985;254:532-533. 9. Miles SH: Advanced directives to limit treatment: The need for portability. J A m Geriatr Soc 1987;35: 74-75. 10. Stratton 81: Withholding CPR in the prehospital setting. Prehosp Disaster Med 1990;5:45-46. I1. Crimmins TJ: The need for a prehospital DNR system. Prehosp Disaster Med 1990;5:47-48. 12. Ayres RJ: Current controversies in prehospital resuscitation of the terminally ill patient. Prehosp Disaster Med 1990;5:49-57. 13. Crimmins TJ: Ethics, law, and emergency medicine. Minn Med 1988;7h708-710. 14. Iserson KV: Prehospital DNR orders (commentary). Hastings Center Report 1989; Nov/Dec:17-19. 15. Sachs CA, Miles SH, Eevin RA: Limiting resuscitation: Emergency policy in the emergency medical system. Ann Intern Med 1991;114:151-154. i6. Emergency Medical Services C o m m i t t e e of the American College of Emergency Physicians: Guidelines for "do not resuscitate" orders in the prehospital setting. Ann Emerg Med 1988;17:1106-1108. 17. Ramzy AI: Maryland's BMS system. Emerg Care Q 1990;6:65-71. 18. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavorial Research: Deciding to forego life-sustaining treatment. Washington, DC, Government Printing Office, 1983, p 236-239, 19. Rausch PC: Letter to the editor. Md Med 1 1985;34: 335-336. 20. Briggs CM: Letter to the editor. Md Med J 1985~34: 336-337.
1386/149
Development of a Palliative Care Protocol for Emergency Medical Services CPR is rarely successful in patients with pre-existing chronic illness; only 2% of these patients are discharged successfully after resuscitation. 1 Nevertheless, m a n y patients are now resuscitated in the hope that other interventions will reverse the inexorable progress of the underlying chronic condition. Families of dying patients often feel that we must do "everything possible," and, for fear of the legal consequences, many physicians believe that they must initiate CPR even if they know that the outlook is hopeless. 1 As a result, CPR is no longer considered an elective lifesaving procedure for selected patients with acute but reversible conditions but, in the opinion of many, has become the standard of care for many patients dying in a hospital or nursing home. However, the attitude is shifting. The m e d i c a l l i t e r a t u r e c o n t a i n s many excellent articles suggesting standards and an ethical approach to these difficult decisions. Bedell et al reported the restiscitation status of 521 of 528 patients who suffered cardiac arrest at Beth Israel Hospital during a 12-month period. 2 Three hundred eighty-nine of these patients (75%) had been designated do not resuscitate (DNR} prior to their death. The DNR group was more likely to be older, to have cancer, and to have an altered mental status. Blackhall reviewed the status of resuscitation, and he argued eloquently against Indiscriminate resuscitation3 In addition, numerous court cases seeking to limit or discontinue treatment have occurred; the hospice m o v e m e n t has grown rapidly; 37 states have passed "living will" legislation; and advocacy groups such as the Hemlock Society and the Society for the Right to Die encourage discussion of these issues. The first malpractice suit charging wrongful resuscitation has been filed in Ohio, and the popular news magazines are publishing thoughtful and comprehensive articles discussing these issues. 3 146/1383
In a recent survey of more than 500 individuals in Boston, 70% of them said they would decide against resuscitation if they were incompetent with a poor prognosis. 4 Most of the older literature has dealt with the resuscitation of patients in hospitals. More recently, there has been an emerging discussion of the appropriateness of attempting to resuscitate all patients in the prehospital setting. With the growth of the hospice movement, more patients are choosing to die at home; with the aging of the population, more people are receiving subacute and chronic care in long-term care facilities. Because of these factors, more Americans are dying outside of the hospital. 5 At the same time, advances in emergency medicine now permit advanced resuscitation in the field. Because of the acute nature of the illnesses and injuries seen in emergency medicine and the critical need for a rapid response, palliative care has not been emphasized and may be misunderstood by emergency providers. If emergency providers perceive their role only to be life saving, conflicts may arise between emergency medical services (EMS) and the patients they serve. Most jurisdictions have policies similar to Maryland. Specifically, emergency medical providers are required to resuscitate a patient in the field unless clearcut signs of irreversible death, rigor rnortis or decapitation, are present. This conflict is not merely theoretical. In one author's practice during a two-year period, there were five separate cases of inappropriate attempts to resuscitate terminal cancer patients by emergency medical technicians (EMTs) who were called for emergency transport for palliative needs or because of family panic. Two of these patients were in acute respiratory distress that could not be managed at home, one suffered a massive gastrointestinal bleed with which the family could not cope, one Annals of Emergency Medicine
collapsed at an outside laboratory, and one patient suffered a nonfatal, self-inflicted gunshot wound. Each of these patients had expressed the desire not to be resuscitated, and the EMTs were notified of this fact and of the terminal condition. Four of the patients were enrolled in a local hospice program. However, resuscitation was initiated against the patient's and physician's wishes because failure to begin CPR would have violated the EMTs' treatment protocols. Clearly, it was then and is now necessary to develop more mutually supportive ways for different specialties to interact. As a result of these issues, some local EMS jurisdictions have developed policies regarding the application of DNR orders in the field. As early as 1985, Minneapolis 6 and Anchorage 7 d e v e l o p e d p o l i c i e s l i m i t i n g attempted resuscitation for selected patients with a poor prognosis, and these early attempts were strongly s u p p o r t e d . 8 O p i n i o n s are h a r d l y unanimous, however, and an intense debate continues. 9q4 Nevertheless, a recent survey reported that seven states (including Maryland) and the District of Columbia now honor prehospital D N R orders. ~5 In six of these jurisdictions, the policy is in the form of a statewide protocol; in one state, it is in the form of an opinion of the attorney general; and in the last state, it is in the form of state law. In addition, 13 states allow or encourage the development of local policies. Only five states mandate resuscitation in all cases. 15 The remaining jurisdictions have no general policy and do not address local policies. Twenty-three states were reported to be addressing the issue or refining their current policies, a5 Thus, while the debate continues in the literature, it appears that the providers are forging ahead and developing their own policies regarding appropriate levels of care to be provided in the field. The American College of Emergency Physicians has 20:12 December 1991
EDITORIALS
FIGURE. Hospice/EMS protocol.
Hospice/EMS Palliative Care Protocol 1. INTRODUCTION A hospice patient is a parson with a terminal illness with a life e x p e n c t a n c y o f six months or less and who is under t h e c a r e of a H o s p i c e Program. Hospice care neither hastens nor prolongs death; it allows the dying process to occur naturally while pa]fiating the p a t i e n t to the highest degree possible. For the hospice patient, life support measures including CPR are inappropriate. H o s p i c e programs ua31continue to include educational programs for patients and families which discourage t he use of 911 for h o s p i c e patients. Occasionally, however, the EMS system is actirated for these patients. This leads to a conflict between the prehospital provider's duty to sustain life and the patient's expressed wish to die nat urally. The purpose of this document is to provide prehospital personnel with a medical protocol to follow when called to provide service to a clearly identified hospice patient. 2. CRITERIA FOR ACTIVATION OF THE HOSPICE/EMS PALLIATIVECARE PROTOCOL The Hospice/EMS Palliative Care Protocol will only be activated when officialdocumentation of hospice status and confirmatioti of patient identification is available. The protocol does not apply to vehicular crash scene~ior mass casualty incidents. In the absence of confirmed documentation and identification, the patient will be cared for according to standard protocols and t raining, 2.1 DOCUMENTATION An official, numbered, Hospice Network of Maryland (HNM) Documentation Card must be present. It will include: Patient Name, Age, Sex Driver's License Number (if available) Social Security Number Height, Eye Color, Hair Color, Race Next of Kin and Number Hospice Program and Number Physician Name and Number 2.2 IDENTIFICATION ]I the H N M Card is present then independent confirmation that the patient is the person referred to in the HNM Card must also be obtained. Identification may be confirmed by the patient (if conscious) or at least one of the following individuals who is present at the site: Doctor, Nurse Hospice Program Provider Q Family Member/Care Provider OR Personal Knowledge of Prehospital Provider (The name of the individual identifying the patient must be recorded in the runsbeet.) 3. LIMITEDPATIENT ASSESSMENT 3.I Vital Signs 3.2 History of Episode 3.2.1 Identify reason aid was requested. 3.3 Pertinent Medical History 3.3,1 Medical Problems and Conditions
3.3,2 Medications 3.3.3 Allergies 4.
SUPPORTIVE CARE FOR SYMPTOM CONTROL 4.1 Respiratory Distress 4.L1 Admialster oxygen at 50-100% concentration by mask without ventilatory assistance. 4.1,2 Suction as necessary.
also discussed these issues and published an excellent position paper regarding DNR guidelines for prehospital providers. ]6 In this discussion, we report a cooperative effort in Maryland to develop a palliative care protocol that a p p l i e s to all h o s p i c e p a t i e n t s throughout the state. We also report the results of a survey of the hospice providers after one year of operation of the protocol. Maryland has a statewide EMS system that is coordinated by the Mary20:12 December 1991
4.1.3 Position for comfort. 4.2 Bleeding, External 4.2.1 Standard treatment (direct pressure, dressing, etc.) 4.2.2 No MAST Trousers or IV's 4.3 Fractures: Immobilize in standard fashion. 4.4 Uncontrolled Pain or Other Symptoms (e.g. s e v e r e nausea) 4.4.1 Allow patient, family, or health care providers (other than the prehospital provider) to administar patient's prescribed medications. Such health care providers administering medications willn o t have to accompany the patient to the hospital. 4.5 Existing I.V.'s: IV lines may be in place and, if so, should be monitored. 5. INAPPROPRIATE CARE FOR A CONFIRMED HOSPICE PATIENT 5.1 Cardiac Monitoring 5.2 Initiation of IV Therapy 5.3 Medications - Except 4.4.1 5.4 CPR 5.5 [ntuhation (EOA or Endotracbeai) or Oral Pharyngeal Airway 5.6 MAST 5.7 Ventilatory Assistance 6. TRANSPORT 6.1 ALS intervention is not required; BLS transport is appropriate as needed. 6.2 Transport to patient's hospice hospital should be considered if feasible and practical. 7. COMMUNICATIONS No consultation is required, but the receMng hospital should be notified to expect the patient and prepare accordingly.
NOTE: Please place this page in your protocol manual. i HOSPICE N E I ~ O R K OF MARYLAND ~ F O O O O 0
pOCUMENTATIONCARD Name _
_
[3riv Lic# HI~ Eyos Next o~ mn
Age - -
Sex - -
. SSNHeir
Race
__.(
)
Hospice
.(
SEE
REVERSE
}
SIDE
Thispalianlis enroBedin the ~__ Hospice Programanddoesnot wishto be resuscitated If emergency hospitalization is cequirod the patient shoul¢~ be transported 1o if possible,andthe Hospice/EMS Palfialiva Can Pmlocol shouldbe followed.Thisidentificationshouldbe inde* pendenllyverilied Patient P~ys~ci.n
t s,onatureanae=, ) s,gn,~u,IaMd,le
land Institute for Emergency Medical Services Systems (MIEMSS). 17 In this program, p r e h o s p i t a l providers responding to a call for assistance provide basic life support (BLS) and advanced life support (ALS) as determined by treatment protocols. The ALS p r o t o c o l s are d e v e l o p e d by MIEMSS with statewide input and are approved by the Maryland Board of Physician Quality Assurance. The protocols mandate responses to defined s y m p t o m complexes and provide the most rapid response to lifeAnnals of Emergency Medicine
threatening emergencies. In Maryland, 37 distinct hospice programs now serve more than 3,000 patients annually, and the number of referrals continues to increase. Most of these hospice programs are affiliated with the Maryland State Hospice Network (MSHN). As early as 1981, preliminary discussions were held between representatives from MSHN and MIEMS8 regarding the management of hospice patients by EMS providers. Despite the terminal diseases exhibited by hospice patients, true emergencies do occur and require prompt and appropriate responses to palliate discomfort and prevent further disability. The sudden onset of severe respiratory distress, pathologic fractures, uncontrolled pain, or massive bleeding sometimes requires rapid transport to the hospice or support hospital for the comfort of the patient and family. This may require use of EMS for emergency transport, even though resuscitation is neither desired nor appropriate. At other times, and despite counselling by hospital providers and physicians, a family may be prepared for the death of a loved one, but the sight and sounds of imminent death are too much to tolerate, and EM8 is called in panic. As a result, the desires of the hospice patient or family and the services available from EMS may conflict. The patient has expressed the wish for palliative care only, but until recently the EMT was required to resuscitate the patient. D u r i n g i n i t i a l d i s c u s s i o n s , the EMS c o m m u n i t y e x p r e s s e d t h e i r concerns that hospice patients would overuse their services, that EMTs should not participate in the care of hospice patients because they were trained solely to save lives, and that misidentification of a hospice patient might result in legal liabilities. The hospice community argued that hospice patients were deserving of emergency services that are supported by the public and that the EMTs were obligated to provide palliative services in addition to resuscitation. In time, a basic philosophical difference 1384/147
EDITORIALS
between the two groups appeared to emerge. EMS representatives felt that not attempting to resuscitate a patient had negative implications that they were "failing" the patient by withholding something that could and perhaps should be done. Hospice representatives, on the other hand, felt that not resuscitating certain patients was a positive response because it represented delivery of the most appropriate level of care, which was in accord w i t h the p a t i e n t ' s wishes. In 1985, the Maryland legislature approved The Maryland Life-Sustaining Procedures Act. This legislation approved "living wills" and recognized the patient's right to refuse resuscitation and other aggressive interventions. 18 Because the EMT is unable to determine the validity of such an instrument in the field, the legislature excluded prehospital EMS providers from the requirements of the law. However, this exception created a dilemma: it acknowledged that terminal patients have the right to refuse resuscitation, but in an emergency the EMTs had to resuscitate the patient because the complex documents were not applicable in the field. The MSHN was concerned about these issues and argued against the EMS exclusion.19, ~0 The EMS community felt it was mandatory to protect the EMTs. Eventually, discussions among the authors led to an improved understanding of the needs and problems of both the hospice and EMS communities. A draft protocol was developed and submitted to a new committee of hospice and EMS providers, representatives from MIEMSS and MSHN, an ethicist, and an attorney. The revised protocol was circulated for review and comment by all interested parties and was submitted by MIEMSS to the Maryland Board of Medical Examiners. It was approved on March 17, 1988. The protocol addresses the problem of identification by requiring a two-step procedure (Figure). The patient or caregiver must first present the hospice identification card to the responding EMT. These cards are n u m b e r e d sequentially, available 148/1385
only through hospice members of MSHN, and issued w h e n the patient's desires and intent are clearly known by the physician and hospice provider. The identification of the patient is verified by the EMT on site. The identification procedure requires the EMT to review the hospice documentation card. The EMT must then confirm that the card correctly identifies the patient. This confirmation may be given by the patient, a member of the family, caregiver present, by the patient, or personal knowledge of the EMT. The palliative care protocol will be implemented only w h e n i d e n t i f i c a t i o n is thus confirmed. Maryland does not maintain a central registry of all hospice patients; authenticity of the identification card is confirmed by the EMT on site as detailed. The protocol mandates specific palliative interventions depending on presenting symptoms. After initial palliative treatment, the patient will be transported to the hospice or support hospital. Other emergency calls take priority, and the EMS personnel will transport to the nearest hospital if their services are needed elsewhere. The protocol applies only to patients enrolled in a licensed Maryland hospice and will be activated only if the patient is clearly identified by the p r o c e d u r e d e s c r i b e d above. If the EMT has any question regarding patient identification or the patient is involved in a mass casualty situation, the standard t r e a t m e n t protocols will apply. Successful implementation of this protocol depended on the education of EMTs and hospice patients and their families as to what represented a palliative emergency. The MSHN and MIEMSS therefore devoted six months to educational programs for both the hospice and EMS communities. Training for hospice families consists of discussions with hospice providers and the referring physician. Written materials describing the use of the hospice identification card are also provided by the hospice. The training discourages the immediate activation of the EMS system without a call to the hospice program first. When EMS is needed, services Annals of Emergency Medicine
are requested by dialing 911 anywhere in the state. There is no separate emergency number for hospice services, as is the case in some states. Special educational sessions were provided to EMTs and hospice providers, and explanatory documents concerning the use of the EMS are provided to all hospice patients at the time the card is issued. The protocol was activated on January 1, 1989. In 1990, a survey of all hospice providers was conducted to identify problems encountered and determine success of the program during the first year of operation. The survey was mailed to 32 hospice members of MSHN, and complete responses were received from 19 (59%). In all, 2,052 patients were enrolled in the responding programs during the year; 975 of them requested and received a hospice identification card (48%). One thousand five hundred twelve patients died during the year (74% of the total group), and 785 of the patients with a hospice identification card died (80%). Fifty-two percent of the patients who died had a hospice card, but only 32% of those patients who did not die had a card. This suggests that the hospice programs tended to issue cards to those patients who were more likely to die but were not always successful in making this prediction. One thousand seventy-seven hospice patients (52%) either refused or were not offered an identification card. Reasons for lack of acceptance of the card included the patient not understanding or being illiterate, the patient dying before it could be discussed, the hospice staff being uncomfortable with the discussion, or, most often, the patient or family being in denial, being overwhelmed by the events, or still hoping for a miracle. The EMS system received calls for only 52 of the 975 patients with an identification card (5%); virtually all of these calls were for transport to the hospice or support hospital because of palliative needs that could not be satisfied at home. Problems identified i n c l u d e d five episodes when families or private duty nurses called EMS without first checking 20:12 December 1991
EDITORIALS
with the hospice because of panic or fright and in w h o m EMS services were not actually required, occasional EMTs who were not familiar with the protocol, and difficulties in obtaining the required physician signatures from major medical centers. Respondents specifically noted that the protocol reassured patients and families that their wishes would be respected, relieved patients' fears of further painful interventions, gave ethical support to the EMTs, assisted the hospice staff in teaching patients and their families, reduced stress for the hospice workers, allowed transfer to acute care institutions for palliative care while maintaining the continuity of care, and prevented unpleasant memories of the death of a loved one. There have been areas of concern. Some EMTs were concerned regarding the identification process and feared that they would be sued for inappropriately "withholding care." In early discussions, we therefore considered the use of identification cards that would include a photograph of the patient. The proposal was event u a l l y r e j e c t e d b e c a u s e it w a s thought that a photograph would not be reliable because the hospice patient's physical appearance changes rapidly, the patient's inspection of his or her own picture in relation to current appearance might be inhUmanely painful, it might stigmatize the patient, and it would add unnecessary expense. Some EMTs felt that hospices would overuse these services and that use of the EMS was inappropriate for dying patients. Clearly, the program does not overtax the Maryland EMS s y s t e m because the 52 calls in 1989 represent only a tiny fraction of the 376,772 total EMS calls received during the same period. Conversely, some have argued that the palliative care protocol is not necessary because the numbers are so small. However, for those pa-
20:12 December 1991
tients who do receive this service, the program is very significant. Some hospice physicians have objected to the protocol's exclusion of IV analgesics. To provide for this, however, it would be necessary to use ALS services. It was also thought that because of the excellent palliative care offered by hospice, pain control would rarely present as the sole palliative care emergency. The protocol does allow caregivers present other than the EMT to administer the patient's routine pain medications by order of the attending physician. The major objection remains that the protocol is too restrictive because it applies only to patients enrolled in a formal hospice program. Clearly, this is the case because it was developed specifically for hospice patients to resolve the potential conflict between EMS and the hospice under current law in Maryland. We are sympathetic to nonhospice patients who do not desire resuscitation, but in this situation another mechanism for appropriate identification must be developed. MIEMSS and MSHN are monitoring the use of the protocol, and discussions continue regarding related issues such as DNR patients requiring transportation from chronic care facilities, and m a n a g e m e n t of the nonhospice, t e r m i n a l l y ill patient and other patients who do not wish to be resuscitated. The authors gratefully acknowledge the support and assistance of William Waterfield, MD; Robin DowelI, RN; Dottle Arnold, RN; and George Smith. P Gregory Rausch, MD Hospice of Frederick County Frederick, Maryland A m e e n I Ramzy, MD Maryland Institute for Emergency Medical Services System Baltimore
Annals of Emergency Medicine
1. Blackhall LJ: Must we always use CPR? N Engl J Med 1987;317:1281 1285. 2. Bedell SE, Pelle D, Maher PL, et al: Do-not-resuscitate orders for critically ill patients in the hospet al: Donot-resuscitate orders for critically ill patients in the hospital: How are they used and what is their impact? ]AMA 1986;256:233-237. 3. Buckley J, Creighton LL: How doctors decide, who shall live, who shall die. US News and World Report January 22, 1990, p 50-58. 4. Danis M, Southerland LI, Garrett JM, et al: A prospective study of advance directives for life-sustaining care. N Engl ] Med 1991;324:882-888. 5. Sager MA, Easterling DV~ Kindig DA, et ah Changes in the location of death after passage of Medicare's Prospective Payment System: A national study. N EngI J Med 1989;320:433-439. 6. Miles SH, Crimmins TJ: Orders to limit emergency treatment for an ambulance service in a large metropolitan area. JAMA 1985;254:525-527. 7. Marshall L: Resuscitating the terminally ill. f Emerg Med Serv 1985;10:24-28. 8. Haynes BE, Niemann JT: Letting go: DNR orders in prehospitaI care (editorial). JAMA 1985;254:532-533. 9. Miles SH: Advanced directives to limit treatment: The need for portability. J A m Geriatr Soc 1987;35: 74-75. 10. Stratton 81: Withholding CPR in the prehospital setting. Prehosp Disaster Med 1990;5:45-46. I1. Crimmins TJ: The need for a prehospital DNR system. Prehosp Disaster Med 1990;5:47-48. 12. Ayres RJ: Current controversies in prehospital resuscitation of the terminally ill patient. Prehosp Disaster Med 1990;5:49-57. 13. Crimmins TJ: Ethics, law, and emergency medicine. Minn Med 1988;7h708-710. 14. Iserson KV: Prehospital DNR orders (commentary). Hastings Center Report 1989; Nov/Dec:17-19. 15. Sachs CA, Miles SH, Eevin RA: Limiting resuscitation: Emergency policy in the emergency medical system. Ann Intern Med 1991;114:151-154. i6. Emergency Medical Services C o m m i t t e e of the American College of Emergency Physicians: Guidelines for "do not resuscitate" orders in the prehospital setting. Ann Emerg Med 1988;17:1106-1108. 17. Ramzy AI: Maryland's BMS system. Emerg Care Q 1990;6:65-71. 18. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavorial Research: Deciding to forego life-sustaining treatment. Washington, DC, Government Printing Office, 1983, p 236-239, 19. Rausch PC: Letter to the editor. Md Med 1 1985;34: 335-336. 20. Briggs CM: Letter to the editor. Md Med J 1985~34: 336-337.
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