Public Health Committee JOINT FAVORABLE REPORT Bill No.: HB-6521 AN ACT CONCERNING MEDICAL ORDERS FOR LIFE-SUSTAINING Title: TREATMENT (MOLST). Vote Date: 4/2/2013 Vote Action: Joint Favorable PH Date: 3/15/2013 File No.: 530 SPONSORS OF BILL: Public Health Committee REASONS FOR BILL: To allow the Commissioner of Public Health to establish a pilot program to implement the use of medical orders for life-sustaining treatment (MOLST). RESPONSE FROM ADMINISTRATION/AGENCY: Jewel Mullen, MD, MPH, MPA; Commissioner, Department of Public Health: In 1990, under Title 42 U.S.C. 1395 cc (a) of the Omnibus Reconciliation Act, Congress passed an amendment known as the Patient Self Determination Act which gives individuals the right to make their own health care decisions and to prepare advance directives (ADs). Medical Orders for Life Sustaining Treatment (MOLST) is an adjunct to a formal written advance directive and will benefit individuals with life limiting illnesses or who are of an advanced age who wish to make their choices known, in exercising their rights and articulating their choices about the medical life sustaining treatments they will accept at the end of life. The MOLST paradigm is an advanced care planning tool that uses a structured process of shared decision-making so patients can express preferences about probable medical interventions. The patient's preferences are then translated into an actionable medical order on a highly visible standardized form that travels with the patient across all care settings to ensure continuity of care. MOLST reflects the patient's current goals for medical decisions that s/he will likely confront within the near future. Currently, there are 15 states with approved MOLST programs, 32 states including CT with developing programs, and three states without a program. The bill gives the DPH the authority to pilot test MOLST through a voluntary program that involves health care professionals and institutions in designated areas of the state. A pilot program will provide the opportunity to collect and analyze data on the use, effectiveness and limitations of MOLST. If the program is successful, the legislature may elect to implement the program statewide, through a comprehensive educational program that targets specific groups of health care providers. James McGaughey; Executive Director, Office of Protection and Advocacy for Persons with Disabilities: Our interest in this bill stems from our experiences representing individuals with significant disabilities who have had “Do Not Resuscitate” (DNR) orders inappropriately entered on their medical charts, or who have otherwise been denied beneficial treatment at the request or with the consent of family members or guardians. These are circumstances where an individual did not have a terminal diagnosis or a condition where resuscitative efforts or life-sustaining treatments such as dialysis, diagnostic procedures, surgical interventions, or the provision of supplemental nutrition or hydration were contraindicated or would be considered futile. In each case, an appointed surrogate decision-maker had requested or consented to the orders to withhold treatment, usually based on their own subjective perceptions about the individual's “quality of life,” not based on any discussion or understanding they had previously reached with the individual. The principal benefit of establishing a MOLST program is the mechanism established to ensure that the wishes of a person who is approaching the end of his or her life can be made explicit and recorded on a clearly recognizable official form which is then signed by the person's physician as a “medical order.” That form can transfer along with the individual between various settings, and will be respected by health care providers in those different settings and by the Emergency Medical Services personnel. Considerable care must be taken to ensure that the information it captures is, indeed, what the person wants. The bill requires that an individual consent, in writing, to participate in the MOLST pilot. I suggest that the regulations be changed to require the individual to sign the completed MOLST form along with his or her treating physician, and that the form be required to prominently state that the individual may, at any time, change his or her mind and revoke any or all of the decisions reflected on the form. The bill should require that any court-appointed guardian or conservator must receive specific approval from the appointing probate court before that person makes decisions about any of the specific areas of care reflected on the MOLST form. The probate court must send notice of the proposed decisions that will be reflected on the MOLST form to any interested parties that had been notified of the original guardianship or conservatorship proceeding, along with an offer to hold a hearing for any requesting interested party. This requirement would not need to apply to a selected or designated health care representative as provided in Section 19a-576. NATURE AND SOURCES OF SUPPORT: Connecticut Hospital Association (CHA): CHA supports the bill and has some concerns about the implementation of the pilot program. We recommend that DPH strive for transparency in the execution of the pilot program, acknowledging the need to collaborate with healthcare providers in the establishment of forms, policies, and procedures. DPH should recognize the need to develop education and training programs for those healthcare providers who volunteer to participate in the program, and conduct communication and education programs about MOLST to inform persons residing within the designated geographic areas. DPH should also recommend evaluation methodologies for the pilot program. It is essential for DPH to establish clarity with respect to how the pilot program intersects with existing law, including constitutional judicial and statutory constraints. Specifically, those planning for the MOLST pilot would need to carefully consider the rights and protections provided in the federal Patient Self-Determination Act, the Medicare Conditions of Participation for hospitals, Chapters 7C and 368w of the Connecticut General Statutes, and the case law that clarifies the process and methods for individuals to make their own healthcare decisions to others. We request the Commissioner hold a public hearing prior to implementing the policies and procedures that will govern the pilot, and print a notice of intent to adopt regulations in the CT Law Journal no later than 20 days after the date of implementation. Please include physician assistants, along with physicians and advanced practice registered nurses, in the list of healthcare providers who may be authorized to sign a MOLST order. CHA urges you to restore the ability for individuals to appoint a power of attorney for healthcare decisions, including through the statutory short form power-of-attorney appointment. This right was removed in a well-intended effort to direct individuals to use more elaborate and detailed living will-type documents. Not being able to rely on healthcare power- of-attorney forms has reduced patient rights, not improved them. CT's restriction on power-of-attorney is out of step with the recognized importance of putting patient's choices first. It is also contrary to federal regulations and guidance, which frequently references power-of- attorney as an appropriate legal means of assigning rights to make healthcare decisions. Ilona Figura, MD: As a Hospitalist and Board Certified Palliative Care physician, I am reminded daily of the need for a system which honors a patient's end of life wishes across the continuum of medical care. A MOLST system would insure patients have important discussions about their mortality and aggressive treatment choices such as dialysis and intubation, long before they have to make decisions about these difficult and critical treatments. Michael FitzPatrick: As a former Nevada Assemblyman and an individual who's wife has recently passed away from a Glioblastoma brain tumor, I support the passage of the bill which addresses one of the most pressing issues facing healthcare today. My wife and I were very fortunate that my wife's best friend is a hospitalist and board certified in palliative care. We went over various options, end of life orders, and do not resuscitate orders. I was never in doubt of what actions to take as my wife transitioned to hospitalization or a nursing home. I always had the appropriate papers with me that documented my wife's wishes that I know had been fully explained and chosen by her. The biggest problem I faced was having no experience being a caregiver. I found professional resources that helped me navigate all of the challenges we faced; which contributed to my wife's quality of life and cost substantially less than institutionalization. MOLST will give the patient their choice. Professional Navigators experienced with all medical options should be added to the MOLST program. Ed Hargus, MD: Supports the bill which makes sure that patient's wishes for lifesustaining treatments will be able to cross different health care settings without unduly burdening patients or their care givers. Rebecca Gagne Henderson, APRN, ACHPN; Palliative Services Manager, Yale New Haven, Saint Raphael Campus: The majority of patients who are at risk for unwanted medical intervention are frail older patients with multiple chronic illnesses, or are terminally ill. Many of these patients have never had a discussion with their primary care provider, or anyone else, for that matter, regarding their values about life or dignity and how they want to live and be treated as they near the end of their lives. Even if individuals have these discussions, there is no way to make others in the health care community aware of their wishes. The MOLST allows for a compassionate and meaningful discussion between a patient and their primary care provider which will eliminate the need to make such decisions in the midst of crises. Janet Hooper, RN, BSN, OCN: As a long time oncology nurse and hospice advisor, I strongly support the concept of a pilot MOLST project. End of life care is a complex and challenging personal and public issue and should not be relegated to simply having an Advance Directive or a Do Not Resuscitate bracelet. MOLST is the standard of care for a number of states and it has enabled a much more humane and ethical conversation by all involved parties coming to terms with often difficult decisions at the end of life. Joanne Gould Kuntz, MD; Clinical Director of Palliative Services, UCONN Center on Aging: I fully support any program that encourages the discussion of goals of care between a patient and the care provider with whom they have a trusted relationship to ensure that the care provided in all settings is consistent with those goals. Marcia Petrillo, Chief Executive Officer, Qualidigm: Qualidigm wholeheartedly supports the bill. It is incumbent on health care professionals to have the necessary conversations with their patients and equally important that the patients' wishes be recorded and transported with them throughout their journey in the health care system. We believe the approval of this bill will be very helpful in vetting a tool that could support patients and their providers in identifying and defining the patients' wishes and carrying out treatment plans. Qualidigm's Communities of Care initiative has demonstrated that when this critically important information follows the patient, quality of care and quality of life are improved, and cost savings are possible. James Ralls: My understanding of MOLST statutes and programs in other states is that they are designed for mentally competent adults who want to make their end of life health care wishes known, usually due to their limited life expectancy and/or advanced age. I believe MOLST programs are more helpful than living wills and advance directives, in part because they allow patients to specify their exact wishes regarding a wide variety of treatments, such as cardio-pulmonary resuscitation, intubation, mechanical ventilation, feeding tubes, IV fluids and antibiotics. I endorse MOLST because it is strictly outcome neutral; patients spell out their wishes for the degree and duration of medical intervention they deem most appropriate at that time of their life; thus, they can request all possible medical treatments for an unlimited period, limited treatment, or an intermediate level and/or duration of treatment. Carin Van Gelder, MD, FACEP, FAAEM: The bill is supported by the CT College of Emergency Physicians, CT State Medical Society, CT EMS Advisory Board, CT EMS Medical Advisory Committee and the MOLST Coalition. This act supports patients' rights to privacy and autonomy. Elizabeth Visone, DNP, APRN, Nurse Practitioner: MOLST would give me the ability to specifically document my patient's choices for the interventions that they want and the interventions that they do not want at the end of life. By having this program in place I will be able to have this conversation with the patient before he or she is in an emergency situation. It allows for the conversation to happen over several office visits. Tracy Wodatch, Vice President, CT Association for Healthcare at Home: The primary goal of a MOLST program is to encourage conversations between the person and the primary care provider about end-of-life care before the person's condition becomes a crisis. Too often this conversation doesn't occur until the person is in crisis in the emergency department or in the ICU at a hospital and it's with a care provider who doesn't know the person or their history. And too often the conversations never occur. The MOLST Program is targeted for specific populations, including persons with serious life-limiting illnesses or persons of advanced age who are interested in defining their wishes relating to end-of-life care. These wishes are documented on a state-approved standardized form that includes medical orders written by a physician or APRN; which enhances the effectiveness of a living will or advanced directives by identifying the person's specific wishes on key medical decisions based on their current medical condition. The MOLST pilot will include an educational component to help care providers have the difficult conversations and it will be earlier in the disease process which may encourage more life review, more questions, more information, which should translate into a greater likelihood that the person is making informed healthcare decisions. NATURE AND SOURCES OF OPPOSITION: Michael Culhane, Executive Director, CT Catholic Public Affairs Conference (CCPAC): We do not feel that a Medical Order for Life-Sustaining Treatment (MOLST) is the best and morally ethical way to address this concern. The MOLST tends to oversimplify complicated medical situations, possibly leading to unethical consequences. The CCPAC instead supports the use of a Durable Power of Attorney in making the appropriate health care decisions. This approach allows a family member or trusted person to make medical decisions for the patient that reflects his/her wishes and the actual circumstances at the time. MOLST's oversimplification of medical decision-making bears the real risk that the withholding of a treatment, as indicated on the MOLST form, may result in the unnecessary loss of life or euthanasia. It fails to adequately address the complexity of life threatening situations. CCPAC supports the designation of a health care advocate through the use of a Power of Attorney, as opposed to a MOLST. Catholic moral teaching related to the providing of health care services allows for the withholding or discontinuing of medical treatments under certain situations. Artificial nutrition and hydration may be withheld when it cannot be reasonably expected to prolong life or be excessively burdensome to the patient. The decision to discontinue these treatments must be made based on the current circumstances and the medical situation of the patient. Decisions should not be made in advance of the crisis situation and/or the premature withholding or denial of services. Such decisions may result in the unnecessary and untimely death of the patient, especially if the medical problem was unrelated to the underlying illness. Stephen Mendelsohn, Second Thoughts Connecticut: We oppose the legalization of assisted suicide which we view as endangering the lives of people with disabilities and elders. Medical Orders for Life Sustaining Treatment (MOLST) would seem to enhance patient autonomy by allowing for choices regarding CPR, intubation, antibiotics, and nutrition. MOLST advocates have an agenda that is heavily biased toward steering people to refuse potentially life-saving treatment. People with disabilities are too often denied life-saving treatment, and are subjected to social pressures that steer them toward death because they are perceived, and sometimes see themselves, as a burden. The MOLST forms, with their checklist format, oversimplify the complex choices that are involved in making good medical judgments. Like legalized assisted suicide, “aid-in-dying,” MOLST claims to expand choice while in practice it takes away choice and steers vulnerable elders and people with disabilities toward death. Christopher O'Brien; Vice President, Connecticut Right to Life: Our organization is strongly opposed to the bill. I believe the program will add confusion and be detrimental to the excellent care currently provided by the EMS system. Many residents are confused about terminology dealing with end of life care and the MOLST program will add to that for providers, families and clinicians. The bill's language does not indicate its intent to propose what is called “Physician Orders for Life-Sustaining Treatment” (POLST). The POLST program establishes a check-box system that is meant to convey a patient's end of life requests that would be communicated to EMS and hospital personnel. POLST would prevent timely treatment intervention simply because of the potential variety of ailments any one person could have. The proposed bill does not provide for any person with experience in medical ethics such as clergymen or ethicists. We implore you to add the input such professionals can provide. A reasonable person would reject MOLST because it is a rigid application to predict the future. We encourage the committee to improve our laws by promoting durable powers of attorney that would be more adept in discerning a patient's wishes through the variety of paths life may lead us down. Peter Wolfgang; President, Family Institute of Connecticut Action: I strongly oppose the bill. Unlike a traditional living will, a MOLST document takes effect the moment it is signed by a physician or other empowered health care provider. Because we cannot predict the future, it is difficult to determine in advance whether specific medical treatments are necessary or optional. These decisions depend on factors such as the benefits, expected outcomes, and the risks or burdens of the treatment, and these may change over time in different circumstances. Here are some of the problems with MOLST: (1) The order may be implemented when the patient is not terminally ill; (2) No patient signature is required for the implementation; (3) No signature is required of a physician attending the patient when the orders are implemented; (4) Orders travel with patients from one health care facility to another; (5) The orders are effective immediately; (5) The form utilizes a simplistic check-box format for directing complex decision making. As an alternative, we encourage all persons 18 and older to use a durable power of attorney for health care. This document allows patients to appoint a trusted person to make health care decisions on their behalf. Reported by: Mike Smith Date: April 19, 2013