STAFF SUMMARY OF MEETING
HOSPICE AND PALLIATIVE CARE
|Time:||09:00 AM to 03:26 PM|
|This Meeting was called to order by|
|This Report was prepared by|
X = Present, E = Excused, A = Absent, * = Present after roll call
|Bills Addressed: ||Action Taken:|
Comments from Dr. Mayerson
Advanced Care Planning Panel
Center for Improving Value in Health Care
Discussion regarding Long Term Care
Spiritual and Ethical Concerns
National Healthcare Reform
09:02 AM -- Introductory Comments
Representative Riesberg brought the task force to order. He reminded the committee will be requested legislation at the next meeting of the interim committee which is scheduled for September 24, 2009.
09:04 AM -- Comments from Dr. Mayerson
Dr. Peter Mayerson, Compassion and Choices, gave an overview of his organization. He stated that the organization advocates for legislation regarding physician-assisted dying. He distributed a handout to the committee (Attachment A).
09:08 AM -- Advanced Care Planning Panel
Jennifer Ballentine, Colorado Center for Hospice and Palliative Care, began her presentation on advance care planning and advance directives in Colorado. She distributed a copy of her presentation to the committee (Attachment B). She described advance care directives and advance care planning as decisions, choices, or preferences that an individual makes ahead of time with applicability to future events. She stated that advance care planning assumes that a competent adult or adult with decision-making capacity will be making decisions. She indicated that such advance decisions include the right to refuse any treatment at any time for any reason and the right to determine what types of treatment may be used when incompetent.
Ms. Ballentine described a living will and explained that a living will directs withdrawal of life-sustaining treatment and may be used to authorize removal of artificial nutrition. She stated that in order to authenticate a living will, an individual must be of sound mind and be at least 18 years of age. She stated that it must be signed when the individual is competent and must be witnessed by two individuals. She stated that a living will cannot be executed or overridden by a surrogate. She explained that problems with a living will occur when the document is not available or when a family member resists its implementation.
Ms. Ballentine gave an overview of a Medical Durable Power of Attorney (MDPA). She explained that a MDPA is a designation of a surrogate decision-maker with the same authority as the principal. She stated that in order to authenticate a MDPA, an individual must be at least 18 years of age and of sound mind. She indicated that a MDPA is useful because it is difficult to anticipate circumstances regarding an individual's medical treatment. She stated that the MDPA is entered as part of the individual's medical history and cannot be overridden by a living will or a CPR directive. The committee discussed possible ways to make advance directive documents more accessible. One suggestion was to establish a central registry for advanced directives. Ms. Ballentine continued her presentation by discussing what can go wrong with the use of MDPAs, for instance, sometimes the agent is not informed, the document may not be available, there is insufficient instruction, or there are family disputes. She stated that its the most efficient way to implement wishes regarding end-of-life care, but there are still problems with MDPAs.
Ms. Ballentine described the CPR directive, which is a statement of refusal of cardiopulmonary resuscitation. To be valid, a CPR directive must be signed by a physician and the individual requesting the directive must be at least 18 years old. She stated that a CPR directive is most appropriate for elderly persons and individuals with a terminal condition. She stated that one of the difficulties of using a CPR directive is that unless it is posted, carried, and presented to emergency medical technicians, it may not be honored.
Ms. Ballentine described the Five Wishes form, which is an "omnibus" advance directive. She stated that it is user-friendly and process-oriented. The Five Wishes form includes information most useful for a hospice but not as useful for doctors and attorneys. Ms. Ballentine discussed the process of the designation of a health care proxy as specified in Colorado state law. Ms. Ballentine stated that Colorado law does not set out a hierarchy of surrogates in Colorado whereas other states are more prescriptive in designation. She indicated that interested parties must reach consensus and appoint a proxy. Ms. Ballentine discussed recent legislation that created designated beneficiary agreements which are agreements between non-married adults which confer certain rights, especially with regard to inheritance and medical decisions. She discussed possible problems with designated beneficiary agreements, stating that people may not be aware of the existence of such agreements. She referenced a chart describing the various provisions of each of the forms discussed during her presentation (Attachment C). She stated her support for clarification and streamlining of the forms. She responded to questions from the committee.
Michael Kirtland, Colorado Bar Association, Advanced Directives Joint Task Force, distributed a draft statute to the committee (Attachment D). Mr. Kritland explained that the draft updates the living will statute. Mr. Kirtland discussed the Terri Schaivo case and stated that one of the issues involved with that case involved a lack of definition for a "persistent vegetative state." He stated that there is currently no definition of "persistent vegetative state" in Colorado law and that advancements in medical technology have led to issues which must be addressed. He stated that the draft legislation attempts to update statutes to encompass these situations. Mr. Kirtland explained that designated beneficiary agreements would are recorded with the Secretary of State rather than with county clerks. The committee discussed continuing education requirements for attorneys regarding changes in advance directive laws, establishing a central registry for advance directive forms, and which state entity would be responsible for the registry.
Mr. Kirtland stated that there is not consensus about the information an advance directive form should include. He stated that for example, Colorado law does not define nutrition and hydration and whether they are considered to be life-sustaining treatment. There committee discussed the terms "nutrition" and "hydration" and how the terms are used in statute and other end-of-life directives. Mr. Kirtland stated that both terms are used synonymously and because of this raise legal issues related to physician or individual choices for end-of-life decisions. Representative Roberts discussed possible objections among medical professionals to not having a standardized form for living wills.
Susan Fox, Buchanan and Stouffer, distributed two handouts, a handout concerning proposed changes in the existing medical durable power of attorney statute and a handout concerning potential changes in the existing proxy decision-making statute (Attachments E and F). She stated that in addition to the directives described by Ms. Ballentine, there are directives related to disposition of last remains and health care benefits. She discussed issues related to individuals who are "unbefriended" and institutionalized. She stated that there are models for addressing the needs of these patients, including having a caregiver become the patient's representative. She stated that there are at least four states that utilize an ethics committee to address the needs of unbefriended patients. She responded to questions from Representative Soper regarding groups that work with homeless individuals who may have some experience serving as an advocate for patients.
The committee recessed briefly.
The committee reconvened. Dr. David Koets, Denver Hospice, distributed a copy of his presentation to the committee (Attachment G). Dr. Koets described the Colorado Advance Directives Consortium, which includes representatives from the medical community, the legal community, the legislature, the Colorado Department of Public Health and Environment, long-term care facilities, the Colorado Center for Hospice and Palliative care, and other organizations concerned with advance directives.
Dr. Koets addressed some of the barriers to completion of advance directive forms and advance care planning. He stated that some of the barriers to completion of advance directives include:
- a belief that physicians should initiate discussions;
- discomfort with the topic;
- procrastination or apathy;
- a belief that family should make decisions;
- a belief that family members would be upset by the planning process; and
- a fear of burdening family members.
For physicians, some barriers to completion of advance directive with patients include:
- a belief that patients should initiate discussions;
- discomfort with the topic;
- time constraints;
- lack of knowledge regarding advance directives;
- negative attitudes; and
- perceptions of failure.
In response to a question from Senator Newell, Dr. Koets stated he believed physicians would have more conversations about advance directives if they were reimbursed for the conversations.
Dr. Koets discussed the Physician Orders for Life Sustaining Treatment (POLST) paradigm. Similar forms include the Medical Orders for Life Sustaining Treatment (MOLST), Physician Orders for Scope of Treatment (POST), and Medical Orders for Scope of Treatment (MOST). He discussed the states that have endorsed POLST programs. Colorado is currently developing a MOST form (Attachment H).
Dr. Koets showed a video related to the POLST paradigm in Oregon.
Dr. Koets described the differences between living wills and the MOST form. Some of the differences include that the living will defines negative preferences, where as the MOST form provides options. He stated that a living will must be retrieved, while the MOST form stays with the patient. He discussed the differences between CPR directives and the MOST form. Dr. Koets discussed the outcomes of the POLST paradigm, noting that the MOST form summarizes all components of advance care planning including information that CPR directives, living wills, and medical durable powers of attorney contain. He stated that the MOST form allows for and facilitates on-going discussions regarding end-of-life decisions and is updated on regular basis. In response to a question from Representative Tyler, Dr. Koets responded that the MOST form is not intended to replace other forms, including the CPR directive. Dr. Koets discussed the importance of education regarding storage of advance directive forms.
The committee discussed whether the MOST form was complimentary with other advance directive forms. Dr. Koets discussed House Bill 09-1232, which would have required the State Board of Health to promulgate rules regarding the development of a MOST form. He described the issues involved with creating a MOST form, including: portability across health care settings; acceptable formats of a form; expanding signature options to advance practice nurses and physician assistants; and immunity for complying with the form. He stated that the introduction of the legislation opened up discussions with the Department of Public Health and Environment and the Department of Regulatory Agencies. Dr. Koets noted that some pilots are underway to evaluate the MOST form. He referenced guidelines for implementing POLST legislation based on other states' experiences implementing POLST forms (Attachment I). An additional handout regarding the MOST form was provided to the committee (Attachment J). Dr. Koets responded to questions from Representative Riesberg regarding physician acceptance of the MOST form. The committee recessed.
01:11 PM -- Center for Improving Value in Health Care
Dr. Jean Kutner, from the University of Colorado Denver School of Medicine, representing the Center for Improving Value in Health Care (CIVHC), began her presentation and provided a handout to the committee (Attachment K). She provided background on CIVHC and its goals which include bringing consumers, business, providers, insurance companies, and state agencies together to develop recommendations for improving outcomes and increasing value in the health care system. Dr. Kutner described CIVHC's Palliative Care Task Force and its members. She then described the vision of the Palliative Care Task Force for end-of-life care. Dr. Kutner described a model of transitions from curative to palliative and hospice care.
Senator Williams referenced prior data on the length of stay in hospice in Colorado, and asked Dr. Kutner's opinion on this and if she had any recommendations. Dr. Kutner said that she believed that hospice care could be used earlier in the process when the debilitating symptoms of terminal diseases begin. She highlighted the need for public education. Representative Tyler asked if patients are surprised about the options for palliative care. Dr. Kutner said many patients view curative care and hospice care as an "either/or" situation, which is partially the result of how care is funded. Representative Roberts asked if it is true that if a patient receives palliative care that it can be life extending, whereas hospice does not have that goal. Dr. Kutner said there is mixed evidence on the issue, but some evidence shows that people live longer in palliative and hospice care, likely because they are more comfortable.
Dr. Kutner described the priorities of the Palliative Care Task Force and steps that can be taken to achieve these goals. She then described potential approaches for increasing palliative care in Colorado which include using data, conducting demonstration projects, reforming payment methods for palliative care, and defining standards for palliative care.
Dr. Kutner described some sample metrics for evaluating the success of increasing palliative care and improving quality. She laid out the task force's strategy and schedule for making recommendations and developing an action plan. Representative Roberts asked about culture change for doctors in order to increase palliative care. Dr. Kutner said that it is increasingly a focus among medical students and that having the palliative care center at the University of Colorado Medical School increases exposure. She then elaborated on the difficulty of changing physician behavior. She discussed continuing education requirements in other states.
01:43 PM -- Long Term Care
Jayne Keller from the Heritage Club of Greenwood Village and Arlene Miles from the Colorado Health Care Association introduced themselves and began their presentation. Ms. Keller discussed challenges and barriers to hospice care in her facility. She said that the regulatory environment is an obstacle. She said that many regulators do not understand the role of hospice. She stated that nursing homes are required to provide the highest level of care and treatment, whereas hospice care focuses on comfort and dignity. As an example of this conflict, she described what how each facility would approach maintaining the weight of a patient. She also discussed the financial barriers to providing hospice care. For example, once a Medicare patient who was previously in a long-term care facility, and enters hospice, the patient may be required to pay for their room and board. She describe the benefits of partnerships between long-term care facilities and hospice communities. She described how hospice staff can supplement assisted living and nursing home staff to provide care. Ms. Keller also highlighted the benefit of hospice in helping families deal with the dying process and grief.
Ms. Miles further discussed the regulatory environment and the annual reviews by the department for long-term care facilities. She spoke to family issues that complicate end of life issues. She gave the example of a 90-year old woman who wanted her daughter to keep getting care even though she was terminally ill and said that the nursing facility was cited for a serious violation for not maintaining adequate care for the daughter. Ms. Miles described the financial penalties and the dispute resolution process. Representative Roberts asked about the portability of the MOST form and if the witnesses were supportive of this. Ms. Miles said they are in favor of portability since it provides clarity when a patient goes between a nursing home and a hospital. Senator Newell asked about the ombudsman program. Ms. Miles stated it was an effective program and that it is not an adversarial process like in other states. Ms. Miles described the importance of education and said that there is not a continuing education requirement for medical professionals regarding end of life directives. She stated that this lack of continuing education hinders knowledge of hospice care and long term care issues.
Representative Roberts asked if there was a level of staff that did not need to be educated on advance directive issues. Ms. Miles stated that hospice organizations play a critical role in educating nursing care staff and families members of individuals in hospice. Ms. Keller said she could not think of any staff in a nursing care facility that should not be educated on advance directive and hospice care issues. Senator Williams asked about education by each nursing facility and if it was mandated. Ms. Miles said that it is not mandatory, but that if harm resulted from staff not providing the required training that the facility would be responsible for the deficiency. Senator Newell asked if nursing homes have a standard practice of where they keep DNRs (Do Not Resuscitate orders). Ms. Keller said that they are kept in the records office, not in the resident's home. Ms. Keller described their procedures in the event of an emergency, and Ms. Miles described the care plans that are developed for each client in nursing care / hospice.
02:11 PM -- Spiritual and Ethical Concerns
Dr. James Karel, Chaplain at the Hospice of St. John introduced himself and began his presentation. Dr. Karel described his practice as a physician and his interest in the spiritual aspects of health care. He described how he became involved with hospice care. Dr. Karel described his role as chaplain. He described interacting with family members and conducting a spiritual assessment of new patients. He described sharing results of his assessment with families, and how sometimes families are surprised by the results. He also investigates the family relationships with the patient, and other issues such as politics and religion, and described how the goal is to be open and supportive.
Dr. Karel discussed the national health care reform legislation and spoke to certain misleading information in the media. He spoke to the increasing costs of health care, the unnecessary tests doctors order, and the cost of expensive medical equipment. Representative Soper asked how long he spends with patients. Dr. Karel stated that he tries to see everyone once a week. Dr. Karel spoke to the length of stay for most patients. He stated a majority of people last three weeks in hospice, but that some last years. He stated that some patients are confused about hospice and even expect to continue curative treatment such as chemotherapy, and that there needs to be more education to prepare patients. Representative Roberts asked how to move the debate forward without touching a nerve about end of life care. Dr. Karel said many people are concerned about costs. Dr. Karel said that it is an issue of priorities and that some people are afraid of change. Senator Newell asked what changes Dr. Karel would make to the system. Dr. Karel said he would like more education in the media and a promotion of everyday conversations to promote hospice and palliative care. Dr. Karel described the history of the Medicare hospice benefit. He stated that physicians could improve how they communicate about hospice or palliative care.
Dr. Karel raised questions concerning the relationship between doctors and pharmaceutical companies. He described how some patients and their families want to "do everything they can do" and then feel guilty if they cannot beat the disease. He then described how hospice patients from different religions and beliefs may view death. He then commented on the importance of planning and how hospice can help people deal with the end of life.
02:42 PM -- National Health Care Reform
Dr. Cordt Kassner from the Colorado Center for Hospice and Palliative Care provided a handout to the committee on advanced care planning (see attachment L). He stressed the importance of advanced care planning and discussed some of the misconceptions in the public concerning the House health bill concerning advance planning and "death panels".
Dr. Kassner then described a presentation on controlling health care costs and referenced the finding that hospice care and advanced directives can improve quality of care and reduce costs (Attachments M and N). He described how different diagnoses have different costs. He pointed to other studies that show cost savings for hospice care. Dr. Kassner then described the relationship between per capita costs and median length of stay in hospice care. Representative Roberts asked whether hospice organizations have discussed ways for innovation at the state level if advance care and hospice provisions are dropped from the national health care reform debate. Dr. Kassner emphasized increased education and other steps to increase access to end of life care, regardless of what happens nationally. He described other efforts in the state to develop best practices and reduce barriers. Representative Roberts and Dr. Kassner then discussed ideas for legislation that the committee could consider.
03:09 PM -- Veterans Hospice and Palliative Care
Dr. Cari Levym Assistant Professor at the Denver Veterans Affairs Medical Center introduced herself and provided a handout to the committee (Attachment O). She also provided a comparison of state laws regarding health care power of attorney and advance directive legislation (Attachment P). Dr. Levi indicated that hospice care is one of the benefits veterans can access as part of their care benefits, but they can also use Medicare or private insurance. Dr. Levy described palliative care training in the medical center and spoke to additional funding that is being used to build a palliative care unit. Dr. Levy stated that the medical center was given a national grant in the amount of $1.5 for the new palliative care unit. Dr. Levy described contract hospices that the VA uses and their partnerships. She stated that veterans have special needs, especially combat veterans. Dr. Levy stated that the VA models its hospice benefit on the Medicare program, but that the system offers palliative care earlier and is able to begin building relationships with patients earlier. Dr. Levy stated that many veterans in her facility are dying in the intensive care unit.
Senator Williams stated that the next meeting will be on September 24, 2009 where the committee will have the opportunity to propose legislation. The committee adjourned.