Final
STAFF SUMMARY OF MEETING

HOSPICE AND PALLIATIVE CARE

Date:07/27/2009
ATTENDANCE
Time:09:00 AM to 04:35 PM
Balmer
X
Cadman
*
Place:HCR 0107
Kester
E
Newell
*
This Meeting was called to order by
Roberts
X
Representative Riesberg
Soper
X
Tochtrop
X
This Report was prepared by
Tyler
X
Elizabeth Burger
Williams
X
Riesberg
X
X = Present, E = Excused, A = Absent, * = Present after roll call
Bills Addressed: Action Taken:
Introductory Comments
CPR Directives and MOST Forms
Overview of Medicaid and Hospice Care
Life Quality Insitute
Legal Pronouncement of Death
Factors Contributing to Ethical Dilemmas
Home Care Association
National Private Duty Association
Adjournment
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09:01 AM -- Introductory Comments

Representative Riesberg gave opening comments and discussed various articles related to end-of-life forms in other states. Materials related to the Butterfly Program were distributed to the committee (Attachment A).

Attachment A.pdf

09:03 AM -- CPR Directives and MOST Forms

Mr. Randy Kuykendall, Section Chief, Emergency Medical and Trauma Services Section within the Colorado Department of Public Health and Environment, began his presentation related to CPR directives and Medical Orders for Scope of Treatment (MOST). He noted that the Emergency Medical and Trauma Services Section is responsible for overseeing CPR directives and described the history and the use of CPR directives in the state. He stated that emergency personnel are not experts in recognizing the differences between forms, and the goal of Colorado's CPR directive statute was to create an easily recognizable form. Up until now, the form has been in a standardized format which is produced in triplicate and must be signed by a physician. He stated that access to the form can be difficult, and that the CPR directive is only one of many different forms relating to end-of-life decisions. He stated that two years ago, the division undertook a revision of the form, and has been working with various stakeholders on the revisions. After a public comment period, the next step is to submit the revisions to the State Board of Health. He stated that the biggest difference between the old and new forms is that the CPR directive will no longer be in a prescribed format. By statute, the form will still require a physician's signature. In addition, Mr. Kuykendall noted that the revisions will allow for copies of the CPR directive to be valid. He described how emergency calls are handled by paramedics, noting that sometimes CPR and advance directive forms cannot be found, and that, in the absence of those forms, medical providers will attempt to resuscitate a patient.

09:14 AM

Mr. Kuykendall responded to questions from Representative Riesberg regarding whether copies of the forms will be accepted, and whether copies of the forms are currently accepted. He responded that copies will be accepted and the goal is to make the form and the process more accessible. He responded to additional questions regarding training for individuals on where to keep advance directive forms, noting that people are trained to keep such forms in their freezer and medical personnel check freezers for the forms. He further responded to questions regarding bracelets that alert emergency personnel to the existence of advance directive forms. Mr. Kuykendall responded to additional questions from Representative Roberts regarding the need for education regarding advance directive forms, stating that education begins with the patient. Additionally, education for caregivers and the community is important. He stated that anything that could simplify the decisions related to resuscitating patients in an emergency situation will help. He stated that if the form is overly long, in an emergency situation, emergency personnel may default to resuscitation if they cannot quickly understand what the form is saying. Representative Roberts asked whether it is a problem that Colorado has at least four advance directive forms, and Mr. Kuykendall responded that from a prehospital care perspective, it doesn't help to have so many forms. However, once the patient has entered the acute care system, the forms may be helpful. In response to a question from Representative Roberts, he stated that the living will is not entirely useful in a prehospital setting.

09:26 AM

Mr. Kuykendall responded to questions from Senator Williams regarding incidents in which terminally-ill patients were resuscitated only to pass away in the intensive care unit days later. He stated that family members often do not know what to do, and call in emergency personnel to treat even terminally ill individuals. He responded to additional questions regarding stakeholder input into the process of revising the CPR form. Senator Tochtrop discussed the education of patients in long-term care facilities and their families regarding end-of-life decisions.


09:39 AM

Mr. Kuykendall spoke to the MOST form. He explained that the MOST form goes beyond CPR directives and gives more information. He stated that it hasn't been fully tested in Colorado, and that there are pilots that are testing the form. He stated that if the form assists providers in making decisions, it will be useful, but the form also allows for more information, which could cause confusion. A copy of the MOST form was distributed to the committee (Attachment B). The committee discussed the requirement that a physician sign a CPR directive.

Attachment B.pdf

09:49 AM

Representative Roberts asked if there is more that can be done to provide liability protection to health care workers who follow advance directive forms. She also discussed whether lawyers or additional individuals should have the ability to assist individuals in creating a CPR directive. Mr. Kuykendall responded that it would be helpful to bring the CPR directive in line with the other forms and allow additional individuals to certify the form. He stated that there are a lot of issues involved with CPR forms, including making sure the patient understands the circumstances under which he or she will or won't be resuscitated. Mr. Kuykendall responded to Representative Robert's questions regarding liability, stating that liability protection is key and is in place, and that a better job needs to be done explaining what the protection means and encouraging providers to use the protection. Senator Tochtrop commented on who can sign the MOST form. Senator Williams commented on the need for revision of the "yellow form" that is given to patients in hospitals regarding health care decision making, and whether it could be better coordinated with the MOST form. Mr. Kuykendall noted that there are pilot projects underway to evaluate the MOST form, and reminded the committee that the emergency community advocates for simple forms.

10:00 AM

Mr. Kuykendall thanked the committee and noted that the department's focus is on CPR directives. He noted that MOST forms and Physicians Orders for Life-Sustaining Treatment (POLST) forms have broader implications outside of the emergent environment.

10:02 AM -- Overview of Medicaid and Hospice Care

Ms. Barbara Prehmus, Department of Health Care Policy and Financing, introduced herself and began her presentation regarding Medicaid and hospice care and distributed a copy of her presentation to the committee (Attachment C). She gave an overview of Colorado Medicaid benefits, noting that hospice care is an optional benefit which a state Medicaid program may choose to cover. She gave a number of statistics related to hospice care in the Medicaid program. Between July 2008 and June 2009, there were 3,168 unique hospice care clients. Expenditures for hospice over that period were $39.9 million. She discussed the cost of hospice care in various settings, including inpatient, nursing facility, and home-based settings. Ms. Prehmus discussed the number of clients served in various settings from July 2008 and June 2009. She discussed the payment of hospice care services for individuals who are eligible for both Medicare and Medicaid. In response to a question from Representative Roberts, she explained that the cost of care in a nursing facility is higher because Medicaid is also covering room and board costs.

Attachment C.pdf

10:11 AM

Ms. Prehmus discussed how individuals become eligible for Medicaid hospice care. A client must be Medicaid eligible, be categorically eligible for Medicaid, have a physician certification of life expectancy of six months or less, and elect palliative and supportive care rather than curative care. Ms. Prehmus discussed what is working well in the Medicaid hospice program, including the formation of a collaborative work group of stakeholders to solve issues relating to timely access to the hospice benefit, including for individuals who are not Medicaid eligible. Additionally, there have been some solutions to eligibility barriers, including enactment of legislation related to long-term care presumptive eligibility and revising rules to make persons entering hospice eligible for expedited assessments. Ms. Prehmus responded to questions from Representative Roberts regarding whether there it is possible to request permission from the federal government to extend the six-month expectancy period.

10:17 AM

Ms. Prehmus discussed what is not working in the Medicaid hospice benefit, including that reimbursement for room and board by Medicaid is limited to nursing facilities and that the federal hospice model does not match the "palliative care" model. She also discussed long-term care eligibility requirements and nursing facility requirements related to the minimum data set and the Preadmission Screening and Resident Review (PASRR). In response to a question from Senator Tochtrop, Ms. Prehmus responded that she does not know of any states that have obtained a waiver for these requirements. She discussed additional obstacles in hospice care beyond Medicaid, including that Colorado's average length of stay in hospice is shorter than the national average, and that advance directive forms are not readily available. Ms. Prehmus responded to committee questions about possible legislation to increase the use of hospice care, and possible issues with extending the six-month expectancy period to a year. She further responded to questions from Representative Roberts regarding the department's role in educating individuals about advance directive forms.

10:28 AM

Susan Langley, Patient Benefit Advisory, Denver Hospice, began her presentation regarding challenges and solutions in access and utilization for hospice patients with Medicaid and distributed a handout to the committee (Attachment D). She discussed a task force that is meeting to determine what is and isn't working with regard to patients with Medicaid. She stated that the process can be streamlined by looking at and improving current processes, and that presumptive eligibility in Medicaid is a step towards improvement. Ms. Langley discussed the PASRR. She discussed a recent survey of members of the Colorado Hospice and Palliative Care Organization regarding what changes in the present system would help with access and utilization of hospice services. The responses included:

Attachment D.pdf

Representative Roberts commented on the financial eligibility requirements for the Medicaid hospice benefit, and the potential for fraud.

10:49 AM

Ms. Langley discussed problems associated with adjustments in nursing facility room and board rates. She also discussed confusion that results when providers do not know what specific Medicaid program a person is enrolled in. Representative Roberts asked for clarification as to how rate adjustments in Medicaid and Medicare affect access to hospice care for patients. Ms. Langley responded to questions from Senator Newell regarding whether members of the hospice care task force described by Ms. Langley are in discussions with Congressional representatives regarding how federal health care reform could incorporate changes related to hospice care. Senator Williams discussed the Medicaid application process and how to streamline the process.


11:01 AM

Ms. Langley commented on recent legislation regarding advanced practice nurses. She stated that Medicaid cannot be billed if hospice patients are treated by advanced practice nurses. She also discussed the hospice benefit offered in private health insurance policies and the Colorado Indigent Care Program (CICP). The committee recessed briefly.

11:12 AM -- Life Quality Institute

The committee reconvened. Dr. Daniel Johnson, Regional Chief, Department of Palliative Care, Kaiser Permanente, began his presentation on palliative care (see Attachment E). He discussed how people have different definitions and expectations of end-of-life care. He described Kaiser Permanente, which is an integrated health plan that provides insurance and delivers health care services. He said that Kaiser Permanente serves about 500,000 members in Colorado and employs approximately 700 physicians.

Attachment E.pdf

11:16 AM

Dr. Johnson discussed three control trials concerning palliative care that touched on aspects such as family satisfaction, pain management, and hope. The studies showed that palliative care did not affect mortality, but did improve quality of life. The control trial on inpatient palliative care showed that palliative care reduced utilization and costs. The home-based palliative care study also showed increased satisfaction and increased likelihood that the



patient would die at home. The study on advanced illness care coordination showed that four to six visits by a palliative care social worker provided more support for patients and families, addressed spiritual affairs, and decreased utilization and costs.

Dr. Johnson explained that Kaiser Permanente began its palliative care center in 2005. Dr. Johnson said that hospice is the gold standard for palliative care. He discussed the other types of palliative care for people who may not be ready or eligible for hospice.

11:23 AM

Dr. Johnson discussed the number of patients participating in various palliative care programs and described the lessons of Kaiser's experience with palliative care. He said that families aren't always after the most advanced or expensive treatments, but rather that they want improved quality of live and to be able to stay in their home. He described Kaiser's investment in the palliative program and community relations and partnerships. Dr. Johnson talked about how Kaiser's lessons can be applied to other systems.

Senator Newell asked about data from the control group in the randomized control trials. Dr. Johnson described the methodology of the control trial.

Representative Roberts asked how Kaiser accomplished shifting the physician mindset concerning palliative care. Dr. Johnson said that as director of the Life Quality Institute, he does education and outreach. He said that Kaiser works to identify advocates of palliative care that can promote the model. He said that families are also valuable advocates if they have a good experience, and families can influence doctors' behavior and views toward palliative care.

11:30 AM

Representative Riesberg asked about communication with the Colorado Hospice and Palliative Care Association. Dr. Johnson described Kaiser's partnership with the association.. Representative Roberts asked about the pharmaceutical component of palliative care and the large number of medicines that are often involved, and possibilities for cost savings and improved quality of life. Dr. Johnson said that many people with advanced illness do require a large number of drugs. He stated that palliative care physicians must understand a patient's goals before altering a patient's medication, i.e., whether the patient is seeking curative care or care for pain management. He mentioned that palliative care and hospice care can reduce need for some medication and reduce costs. Representative Roberts asked how Kaiser promotes advance directives and if patients are accepting of them. Dr. Johnson said that he believes that advanced directives are important, but are limited tool that do not always do what they are intended to do. He described Kaiser's public training on advanced directives. He noted that only about 20 percent of the public creates advanced directives. He said many individuals do not know what they want and want their families to do the best they can. Dr. Johnson said that a 90 percent goal for completing advanced directives is not feasible. He said the goal should be for skilled and compassionate caregivers to guide families and patients through the process.

11:38 AM

Senator Williams asked if palliative care is included in all Kaiser policies. Dr. Johnson said that usually it is, but sometime home-based palliative care is not included. Senator Williams asked about CPR directives and other advanced directives. Dr. Johnsons said that patients often discuss what they want and it can be put in the patient's electronic medical record. However, he said patient wishes on advanced directives and orders are a moving target and the physicians need to continually ask patients their wishes to revise their orders. Dr. Johnson said that the goal of annual updates on patients' wishes regarding advanced directives is important, but difficult.

11:41 AM

Representative Roberts asked about data concerning prescription drug costs. She also asked about national health care reform and the role of hospice and palliative care in the reform effort. Dr. Johnson described some of the outreach efforts to put hospice and palliative care into federal discussions regarding health care reform. He stated that hospice care and its possible cost savings are getting a lot of attention. He mentioned the Veterans' Administration as another integrated care model that provides hospice.

Representative Roberts asked about local efforts to implement hospice and palliative care. Dr. Johnson discussed how local situations and barriers can influence a national initiative to implement a program like Kaiser's.

Senator Newell asked what can be done legislatively. Dr. Johnson discussed recommendations and discussed serving patients who are eligible for both Medicare and Medicaid. He also discussed how physicians are not reimbursed for consultations concerning end-of-life care. He said that it is important to show that having the consultations can increase length of stay in hospice and lead to other improvements. He said that community-based palliative care needs to be certified so that quality services are there. Dr. Roberts said there is a need for accreditation of programs. He also discuss loan forgiveness and other incentives for getting people into the field of hospice and palliative care.

11:52 AM

Senator Tochtrop asked if physicians need continuing education regarding hospice and palliative care. Dr. Johnson said it depends on the institution. Representative Tyler asked about the community, team-based model and if it can go beyond palliative care. Dr. Johnson said team care is a good model and that there needs to be the right training to ensure that the teams work well and meet the needs of the patients. Representative Tyler asked if a team approach would work in treating chronic disease and in other areas. Dr. Johnson said that there needs to be training around the specific area of care.

Representative Soper asked about board certification for palliative care. Dr. Johnson discussed the board requirements and deadlines. Rep. Soper asked if general practitioners or other specialists must answer questions regarding end-of-life care on their board recertifications. Dr. Johnson said specialists who do not work in palliative care probably do not have to answer such questions. He described why it is necessary to improve knowledge of end-of-life care among all doctors. Senator Williams asked about social work certification and palliative care requirements. Dr. Johnsons said that there are no palliative care certification requirements for social workers and chaplains.

12:00 PM

Representative Roberts asked about the role of advanced practice nurses, especially in rural areas. Dr. Johnson said that advance practice nurses are important in the palliative care model. He said that advance practice nurses can do great things, especially with physician back-up.

Dr. Johnson concluded his remarks by discussing education and increasing awareness concerning end-of-life care. The committee recessed.

01:06 PM

Representative Riesberg reconvened the committee. He spoke to two handouts, a packet of articles regarding end-of-life care and what other states are doing, and a report titled "End-of-Life Care: Services, Costs, Ethics, and Quality of Care" from the Congressional Research Service (Attachments F and G).

Attachment F.pdf Attachment G.pdf

01:08 PM -- Issues Surrounding the Legal Pronouncement of Death and Other Aspects


Dr. Robert Bux, El Paso County Coroner and President of the Colorado Coroner's Association introduced himself to the committee. He provided details regarding the role of the coroner when hospice patients expire. Senator Newell asked Dr. Bux about the process in which counties select a coroner. She asked if he thought the process which Colorado uses is the best. Dr. Bux stated that there are two ways in which counties select a coroner, through an election process, or by appointment. Dr. Bux responded that he has worked under both systems and both have their advantages and disadvantages. He explained Colorado's selects a coroner via the election process. He stated that all 64 counties in Colorado have direct access to a forensic pathologist if needed. He explained that the coroner's big concern is who is going to sign the death certificate and who is designated to pick up the body from a hospice center. He stated that often times it depends on who the family calls after the family member expires. He stated that if the coroner's office has been notified of the patient's residence in the hospice center, the coroner will be notified of the death. He stated that at times, family members call 911 and then the police show up which delays the process for the coroner. He stated that in El Paso County, hospice care centers register their patients with the coroner's office. Senator Tochtrop asked if a body can be cremated if a death certification has not been signed. Dr. Bux replied that a body cannot be buried or cremated until a death certificate has been signed.

01:28 PM

Janelle McCallum, Vice President of Clinical Operations, Denver Hospice, introduced herself and spoke to a handout regarding the various counties and their requirements on what to do when a hospice patient expires (Attachment H). She stated that if a person expires and it is due to an injury or trauma, the death is suspicious for some reason, they always call the coroner. She described other incidents when the hospice care center would alert the coroner to a patient's passing. She stated that each county coroner has different procedures. She confirmed that some counties require the hospice center to pre-register hospice patients, and some counties do not require registration. She explained that each county has different procedures; some counties require that a coroner investigate all deaths in a hospice, and some do not. Ms. McCallum stated that some coroners take the deceased patient's medication or driver's license, but there is little consistency among the counties.

Attachment H.pdf

01:35 PM

Ms. McCallum spoke to issues regarding who can pronounce a person's death and sign a death certificate. Ms. McCallum spoke to an opinion from the Colorado Attorney General's office to the Board of Nursing that discussed if a nurse can determine death and pronounce death (Attachment I). The committee discussed circumstances regarding the pronouncement of death.

Attachment I.pdf

01:43 PM

Dr. Bux stated that he does not believe legislation is necessary to require that all coroners have the same process in place regarding the legal pronouncement of death. He spoke to incidents where a person may be paralyzed or unconscious, and questions are not asked because a patience is not registered with the coroner's office. He stated that many people have slipped through the cracks. He stated that when a patient of hospice is registered with the coroner's office, it is easier on the hospice organization because the information is provided and is on record. There was some discussion regarding standardization of pre-registration for hospice patients. Senator Williams asked questions regarding the opinion from the Colorado General Attorney's Office regarding when and if nurses may pronounce death. She stated that the committee should request a new opinion on the matter, as the one Ms. McCallum referred to was from 1993.

01:51 PM

Michael Kirtland, Colorado Bar Association - Elder Bar, introduced himself to the committee. He stated that his perspective focuses on the family of the hospice patient. He stated that they would like to see consistency among coroner's offices. He stated that it would be preferable that the information come from the end user rather than top down from the legislature. Dr. Bux spoke to other models that could be put in place. He cautioned the committee that the state might have to spend a lot of money and resources for a new system, but in the end, it might not be effective. He stated that not one size fits all. Senator Newell asked the current salary of a coroner. Dr. Bux provided a range of salaries and stated that the salaries are determined by county commissioners. Senator Tochtrop also noted that the General Assembly has to approve the salaries. Ms. McCallum brought up the impending Medicare cuts to the hospice providers. She stated she was very concerned about the upcoming cuts to the budget.

02:03 PM

Dr. Bux stated that he does not feel comfortable allowing certain medications to stay in the home. He stated that he would prefer to take the medications of the deceased patient with him. He stated he does not have an opinion on the drugs themselves, but is concerned that the medications get into the wrong hands and then are sold on the street. He also commented on why the coroners take the deceased individual's driver's license. He stated they usually take the driver's license and punch a hole in them. Ms. McCallum responded that with the amount of deaths that occur in a hospice, it would be burdensome for a coroner to come out every time to confiscate medications or driver's licenses. She stated that it is her understanding that the medications are the property of the deceased and the deceased's estate. She stated that she does not want to have the burden of transporting the drugs, but they would prefer to destroy the drugs in the home. Dr. Bux stated that El Paso County does not allow medications to be left in the home.

02:19 PM

Mr. Kirtland explained some of the processes that families deal with after death. The committee discussed some of the various issues that families deal with, including what to do with medications and what mortuary to send the body to. He stated that there is a check list that is provided to families by mortuaries that helps family members know the various tasks they need to take care of after a family member expires. The committee took a brief recess.

02:32 PM -- Factors Contributing to Ethical Dilemmas

The committee reconvened. Ms. Susan Fox introduced herself and stated that her presentation addresses ethical dilemmas regarding end-of-life decisions. She stated that she was the only American to receive a master's degree in bioethics from the University of Leuven, Belgium. She stated that she was going to provide an overview of several issues that many family members, physicians, and other entities deal with regarding end-of-life decisions.

She highlighted that religions have different foundations for their ethical compass which leads to the "right" way to do something. She stated that there is not one singular ethical code. She described several current hot button ethical dilemmas that doctors, families, and various other actors evaluate at some point regarding end-of-life decisions. These hot button ethical dilemmas include:

03:12 PM

There was some discussion around who makes decisions regarding end of life and legislation. She encouraged the committee to have a real discussion surrounding artificial hydration. She stated that it could be beneficial for many patients. The committee discussed the "hot button" issues with Ms. Fox. Various other issues were discussed such as organ donation and organ transplants.

03:29 PM -- Home Care Providers

Barbara McGinn, Senior Clinical Manager and Statewide Manager, Centura Health at Home, Cindi Pursley, Director of Hospice, Centura, and Todd Chambers, All the Comfort at Home, introduced themselves to the committee. Ms. McGinn stated that services provided in the home for hospice care patients can only be reimbursed through Medicare Part D. Ms. Pursley stated that they cannot be reimbursed for palliative care under Medicare. Senator Tochtrop asked if any discussions regarding end of life were taking place on a national level. The panel stated that they were not aware, but assumed that end of life coverage was going to be included in any type of health care reform.

03:38 PM

Mr. Chambers explained that a licensing scheme was enacted in July of this year that affects home care providers. He stated that there were unintended consequences to the legislation. He noted that his company, which provides home care, has in the past, assisted in the administration of pain medications in coordination with the hospice care provider and family caregivers, but this practice has been affected by the licensing legislation. There was discussion regarding who can administer medication to home care patients. Ms. McGinn stated that home care providers would never intentionally jeopardize any patient. She stated that home care workers can safely administer medications. Ms. Pursley stated there are many safeguards in place regarding medication administration, including tracking the amount prescribed, limiting the amount of medication one can physically have in a home, and limiting the time frame in which medications may be refilled. Ms. McGinn stated that home care providers are accountable to the state and to the Joint Commission. Mr. Chambers spoke to the need to license private caregivers, however he acknowledged that it is very difficult to regulate them since they are mostly hired privately and are paid by a family member rather than an agency.

03:54 PM -- Private Duty Nurse

Lorin Chevalier, National Private Duty Association, introduced himself. He stated he works at Senior Helpers and sits on the Home Care Advisory Committee which is addressing the new home care licensing regulations. He stated that there is no reimbursement under the Medicaid/Medicare programs for non-medical providers who care for hospice patients. He spoke to the requirement one must meet to be a private duty nurse. Some of these include a background check and obtaining professional liability insurance. He stated that hospices, palliative care providers, and nursing associations are collaborating to help individuals at the end of life. Mr. Chevalier stated there is still a stigma that is attached to the term hospice. He stated that many people think that hospice means that a person is on their death bed. He stated that some kind of educational outreach would be beneficial in this capacity in promoting hospice services. He spoke to some of the issues that hospice providers encounters such as continuing 'curative' care when a patient is dying. Mr. Chevalier stated there needs to be more education regarding how and when an individual is referred for hospice care, palliative care, or medical treatment. He stated that some type of health communication exchange where individuals could exchange information would be beneficial.

04:21 PM -- Clarification regarding the CPR form

Jennifer Ballentine, Advanced Directive Care Consortium, clarified information that was provided by Mr. Kukyendall earlier in the day. Ms. Ballentine explained the reasoning behind why the CPR directive needed to be the original with the original signature of both the patient and physician. She described the historical context in which the form was developed and stated that the original intent of the form was to be controlled by a physician. She explained that process of using advanced directives has progressed and that some of the features of the form are now a barrier. In working with Advanced Directive Consortium, they evaluated whether regulatory or statutory changes were necessary to update the form. She stated that in their evaluation of the CPR directive that Colorado law allows for flexibility. She stated that it is possible to make a CPR directive without the signature of a medical physician.

04:26 PM -- Public Testimony

Susan Fox spoke to the committee about her thoughts on neonatolgy. She stated that it is very difficult for all parties involved to deal with the death of an infant. She suggested that when biological parents are in these types of situations, they are not always able to make decisions clearly due to the emotional strain. She stated that there should be a discussion around who could be considered legal decision makers in these situations. She said that parents should not have to go through a parental rights termination or be the subject to an abandonment order because they are unable to make difficult decisions regarding end of life decision for their infant. She suggested that hearing from neonatal nurses and physicians may be something for the committee to consider. Ms. Fox stated there are about four states that allow immunity for physicians who make decisions in these difficult cases.

04:34 PM

The committee adjourned.