Summary Recommendations: i.ethics.advancedirective.SUMMARY.DO.14Aug04.doc Page 1 of 7:
FINAL RECOMMENDATIONS for TRANSMISSION to EDITORS
NOTE: Save summary worksheet using the same filename format as used in the original worksheet with the addition of noting that it is a summary worksheet as noted: Taskforce.Topic-summary.Author.Date.Doc where Taskforce is a=ACLS, b=BLS, p=Pediatric, n=neonatal and i=Interdisciplinary. Use 2 or 3 letter abbreviation for author’s name and 30Jul03 as sample date format. Worksheet author should update date on filename when new summary versions are created.
Worksheet Topic/Filenames/Authors:Advance Directives
Deems Okamoto, M.D. / Home Task Force/Subcommittee:
_____BLS ____ACLS _____PEDS ___PROAD
_X__INTERDISCIPLINARY _____Other:
Author’s Home Resuscitation Council:
AHA:__X_ ERC:___ CLAR:___ CHSF:___ RCSA: ___
ARC: ___ NZRC: ____ IAHF: ___ / Date Submitted to Editors: _15 August 2004______
STEP 1: INTERNATIONAL CONSENSUS OF SCIENCE with TREATMENT RECOMMENDATION. State approved international consensus on science with treatment recommendation statement (Do not include class of recommendation attached to statement)
A clear, unambiguous expression of the patient’s wishes in regards to resuscitation (an advance directive, a living will, ranging from conversations with relative or friend to a formal notarized document) should be respected. Whenever possible, substitute decision making should be avoided. Routine discussions with patients at and during admission about resuscitation are required and recommended. [Current guideline 18b 2000]
STEP 2: SUGGESTED SUMMARY OF CONSENSUS ON SCIENCE STATEMENT WORDING. Combined summary of worksheet author comments (from all worksheets completed on this topic) reviewing science justification of the treatment recommendation or intervention approved by ILCOR task force chairs. Include the important citations (include level of evidence) that support the science. This section can be pasted from your worksheet discussion (i.e., “REVIEWER’S FINAL COMMENTS AND ASSESSMENT OF BENEFIT / RISK”) into this section, but select those key references rather than all references from your worksheets.
A clear, unambiguous expression of the patient’s wishes in regards to resuscitation (an advance directive, a living will, etc.), ranging from conversations with relative or friend the patients’ surrogate to a formal notarized document, should be respected sought. Whenever possible, substitute decision making should be avoided discouraged. Routine discussions with patients at and during admission about resuscitation are required and recommended and their surrogates about their preferences for end-of-life care and resuscitation is highly recommended prior to and at the time of their admission to a health care facility. At all times, patient privacy and dignity should be respected while addressing these preferences.
Discussion:
Patient preferences for end-of-life issues and decisions are best described by Advance Directives and empowered by the legal instrument of the Durable Power of Attorney for Health Care. For the United States, this has been enacted into law by the Patient Self-Determination Act of 1991 which required that patient preferences for life-sustaining issues be addressed each time the patient comes into contact with the public system of medical care.(Basanta 2002) Later, EMTALA legislation(Services and 7500 Security Boulevard 2004) made emergent treatment for life-threatening events mandatory and the need for addressing patient preferences under those trying situations imperative. With the arrival of the HIPAA legislation((CDC) 2003), this issue becomes even more tenuous as the patient is further separated from his surrogate advocates by a law intended to relieve the financial burden of health care.
Unfortunately, all scenarios of life-terminating events cannot be addressed by a singular instrument as evidenced by the many forms of Advance Directives and Living Wills, etc. currently available from a variety of public and private sources. Studies have shown that patient preferences at life’s termination are often evanescent and inaccurate and they often change as the terminal event approaches(Prendergast 2001) or are dictated by social and cultural preferences(Mebane, Oman et al. 1999). In a small, elegant paper by Coppola(Coppola Km 2001), surrogate decisions are often inaccurate except in extreme crises conditions when death is apparently imminent, implying that better means still need to be found to express an individuals’ desires for terminal care other than those that are currently available. Some individuals even argue whether Advance Directives are even useful or relevant (Tonelli 1996).
Still, as an instrument of the patient’s voice when he cannot speak for himself, some form of Advance Directive is better than decisions made in his behalf by uninformed care providers(Marco, Bessman et al. 1997; Mohr and Kettler 1997; Marco CA 2002; Marco CA 2003; Kessler and McClellan 2004). With the rapid growth of medical technology and critical care services, death as a physiological and social event has been transferred from the community where the patient lives to a multitude of healthcare facilities, forcing society to re-learn the process of dying(Ott 1999). But, overall, having some form of Advance Directive with or without an educated surrogate is better than providing treatment based on the current prejudices of the legal and medical systems(Fins 1997; Marco, Bessman et al. 1997; Mohr and Kettler 1997; Partridge RA 1998; Marco CA 2002; Marco CA 2003; Lo and Steinbrook 2004).
Many of the trials and studies researched for the levels of evidence to validate Advance Directives cited in this document lacked transparency or were of suspect methodology (Patel, Sinuff et al. 2004) and more research is needed to clarify the form, if not the place, for Advance Directives in our society(Ott 1999) . Nevertheless, as described by the proposed guideline, any type of Advance Directive is to be sought and compliance encouraged although addressing its contents would best be left to the judgment of the authorized health care provider, preferably in concert with the patient or with the aid of the patients’ elected surrogate(Pollack 2000; Puchalski, Zhong et al. 2000).
Comments:
Underlying a persons’ self-determination is the concept of autonomy: The individual has the right to decide for himself those things that make him an individual. Imbedded within this concept is the right to decide whether to allow or forgo treatments and interventions that may prolong or save his life. Concurrent with this is the right to allow, and sometimes demand, treatments that provide comfort and dignity to himself, his family and his community. Into this mix are added numerous societal, political, economic, cultural, religious and moral issues along with the coincidental demands of the environment in which the patient lives (and dies).
With the fragmentation of the nuclear family, the multi-cultural immigrant base of our uniquely American society, and the proliferation of medical science and procedures, many patients are left alienated from their family and surrogates, depending instead on their care providers to make decisions for them in times of crisis or death. Their autonomy is lost and they are left to the mercies of the system they have been relegated to. Just as often, this system is poorly advised as to the patients’ wishes under these circumstances and proceeds to follow a plan dictated by societal and economic needs.
Recognizing this lack of congruence between individual needs and desires and those of the system of care the patient finds himself in, Congress, the states and local agencies have promulgated a number of laws and rules to allow the patient’s voice to be heard, even when he cannot speak for himself. Thus, the Patient Self-Determination Act of 1991; the EMTALA legislation of 1986; and the HIPAA legislation of 2003 are attempts to give back the sense of autonomy to patients throughout the United States. Their demands and constraints on patient autonomy give legal precedence for patient rights to the medical and care-giver community. How well those rights are being addressed is another matter and is often tainted by personal bias, circumstance, economics and the often-differing ethics of the care providers. Our society remains unclear as to how to resolve this conflict and has left it to the ethicists and philosophers to mediate this dilemma.
At present, no single instrument, whether verbal, written or presumed, exists to conjointly meet the needs of the patient and his caregivers. This task, almost by default, has been left to the caregivers to resolve. Their answer is the Advance Directive.
The reasoning for Advance Directives is to give written permanence to a patients’ preferences when he is no longer capable of doing so during times of illness, injury or in the process of dying. This condition may occur in any number of locations from the patients’ bed to an accident scene on the road. As such, he may no longer be able to respond to his care providers, be they trained or lay persons, but its intent is to give notice to these care providers or surrogates of his wishes in such circumstances.
Advance Directives occur in many forms, from the very narrow interpretation of DNR/DNAR; the scenario-based living wills; the Durable Power of Attorney for Health Care designating surrogate intervention; to the more broadly-applicable Physician Orders for Life-Sustaining Treatments (POLST). All of these documents have the limitation of being static expressions of the patients’ preferences at the time of their conception. As pointed out by numerous medical ethicists, these documents hold little value in the real world of medical care (sans the POLST document) without continued reassessment by the patient or his surrogates in concert with the biomedical advice of his physician or other care provider and, unless, enforced by law or common societal usage. Yet, they are the best we have at present and will remain so until more well-conceived and randomized, controlled studies can be done on a large, representative cross-section of our society to give us better instruments to take their place.
Taking all this into consideration, the articles cited in this document are a representative sample of the current literature as relates to Advance Directives. They are neither exhaustive nor all-inclusive as the concept of Advance Directives flows broadly into the fields of ethics, culture, philosophy, society, government, economics and psychology as well as into medicine. Most of these articles are science-based with a few reaching the Level 1, Excellent category (per the author’s estimation using his personal interpretation of the Worksheet Step 2 Quality Assessment tools). Some of the articles are ethical dissertations and were included for the quality of thought and reasoning expressed. Many of the articles scanned and rejected were qualitative, empirical studies or observations with concurrent commentary. A few of these articles were included as examples and because of their diverse conclusions. By design, DNR/DNAR has not been considered as it is being re-evaluated by others and will be presented independently by them.
Included in the Supportive and Oppose sections are listed the articles felt by the author to be most representative of the case for and against the use of Advance Directives. As summary comment, all the included articles either advocated for Advance Directives of some type or were neutral in opining their need or usefulness. Most conceded better means of patient communication were needed between the patient, his surrogates, his community representatives and his physician. Only a single paper (Tonelli 1996) was expressly negative about any form of Advance Directives, yet the intent was that some form of communication needed to occur between the patient and his caregivers if only for moral and ethical reasons. All of the appropriate Cochrane, DARE, CCRCT and ACP Journal Club reviews were included for completeness. Many PubMed reviews and selected AHA Master Library articles were hand-selected for inclusion. Included also are two articles of ethical opinions which the author felt particularly relevant to this discussion.
Finally, in reviewing the C2000 Guidelines, Ethical Aspects of CPR and ECC (Part 2 of the document), few changes or updates need be made as the current ethical, legal and medical environment has not significantly changed since 2000. Except for the inception of HIPAA, the author sees little need to alter an already excellent and inclusive guideline.
Supporting:
(Hofmann, Wenger et al. 1997; Marco, Bessman et al. 1997; Covinsky, Fuller et al. 2000; Puchalski, Zhong et al. 2000; Abramson, de Vos et al. 2001; Prendergast 2001; Marco CA 2003; Lo and Steinbrook 2004; Patel, Sinuff et al. 2004)
Hofmann, J. C., N. S. Wenger, et al. (1997). "Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment." Ann Intern Med 127(1): 1-12.
Prendergast, T. J. (2001). "Advance care planning: pitfalls, progress, promise." Crit Care Med 29(2 Suppl): N34-9.
Lo, B. and R. Steinbrook (2004). "Resuscitating advance directives." 1501-6, 2004 Jul 26.
Patel, R. V., T. Sinuff, et al. (2004). "Influencing advance directive completion rates in non-terminally ill patients: a systematic review." 1-9, 2004 Mar.
Puchalski, C. M., Z. Zhong, et al. (2000). "Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project." J Am Geriatr Soc 48(5 Suppl): S84-90.
Marco, C. A., E. S. Bessman, et al. (1997). "Ethical issues of cardiopulmonary resuscitation: current practice among emergency physicians." Acad Emerg Med 4(9): 898-904.
Marco CA, S. R. (2003). "Prehospital resuscitation practices: a survey of prehospital providers." J Emerg Med. 24(1): 101-106.
Covinsky, K. E., J. D. Fuller, et al. (2000). "Communication and decision-making in seriously ill patients: findings of the SUPPORT project. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments." J Am Geriatr Soc 48(suppl)(5): S187-S193
Abramson, N., R. de Vos, et al. (2001). "Ethics in emergency cardiac care." Ann Emerg Med 37(4 Suppl): S196-200.
Opposing:
(Anonymous 1995; Anonymous 1996; Tonelli 1996; Teno, Lynn et al. 1997; Teno J 1997; Teno Jm 1997; Henderson and Laugharne 2004; Oliver, Porock et al. 2004)
Anonymous (1995). "A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators.[comment][erratum appears in JAMA 1996 Apr 24;275(16):1232]." JAMA. 274(20):1591-8, 1995 Nov 22-29.
Anonymous (1996). "A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators [see comments] [published erratum appears in JAMA 1996 Apr 24;275(16):1232]." Jama. 274(20):1591-1598, 1996