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ExCEL Committee Meeting Friday, June 13th
Minutes
Attendees: Diane Cacavo, CVH Pharmacist; Joanne Root, North Country Hospital; Sally Schober, VEN/interested person; Sandy Filiault, VA Center; Marlys Lemnah, VNA St. Albans; Eva Zivitz, Rutland VNA and Hospice; Fran Brokaw, DHMC; Lisa Szczepaniak, DHMC; John Campbell, Vermont Ethics Network; David Babbott, Death with Dignity; Angel Collins, Chittenden County VNA; Richard Austin, Death with Dignity; Wendy Bayles-Dazet, VNA/VNH; Ginny Fry, Hospice and Palliative Care Council of Vermont; Letha Mills, SW Vermont Cancer Center; Marilyn Hart, CV Hospice; Marilyn Rinker, Norwich School of Nursing; Joan Madison, Madison-Deane Initiative; Jessa Block, Vermont Medical Society; Madeleine Mongan, Vermont Medical Society; Sharon McDonnell, CDC and VDH; Diana Peirce, CV Home Health and Hospice; Denise Niemira, Northeast Kingdom Palliative Care Initiative; Jill Lord, Mt. Ascutney; Dick McCormack, Hemlock Society.
Diane Cacavo, CVH staff pharmacist Challenge: developing a DNR standing order, getting guidelines to replace standing orders and dealing with integrating a computer system and standing policies
Joanne Root, North Country Hospital Accomplishment: getting a 5 page to 2 page doctors order Challenge: getting more information out to the community on writing living wills and how to establish a DNR status
Sally Schober, interested in end of life concerns
Sandy Filiault, VA center Accomplishments: have a computer consult program and standing orders on computer; have AICC advanced illness coordinated care program – now getting a lot of advanced illness consults Challenges: still not getting many hospice or palliative care consults; need more help for patients to fill out advanced directives/DNR orders
Marlys Lemnah, RN, VNA St. Albans Accomplishments: is recently getting back into palliative/hospice care – happy to be back in field
Eva Zivitz, Rutland VNA and Hospice Accomplishments: Rutland has started AICC system and cancer center leaders have been presenting – it has helped people transition into hospice care Challenge – expanding AICC program to rest of community
Fran Brokaw, DHMC, physician on palliative care team Accomplishments: recruiting Lisa Szczepaniak to be full-time palliative care NP; becoming an accepted, regular part of medical team Challenge: finances -- director is no longer funded to direct the center, short staffed re. physician support
Lisa Szczepaniak, DHMC, experienced hospice nurse, wants to bring skills and energy to NH and VT Accomplishments- acceptance as part of the medical center and part of the cancer center; referrals becoming more routine part of end-of-life care
John Campbell, Vermont Ethics Network Accomplishment: production and publication of , “When You Must Make Medical Decisions for Someone Else”-- saw the need to develop more resources for guardians, and those caring for others Challenge: finding out if advanced directives, living wills are actually working in Vermont– are they promoting shared decision making?
David Babbott, retired physician, Death-With-Dignity Campaign Accomplishments: word is now out -- patient choices at end of life are being discussed Challenges: much of what is read and heard gives a negative spin to the issue – want to get more balanced view to patients and physicians
Angel Collins, Chittenden County VNA Accomplishments: transitioning the Madison-Deane Initiative to the VNA Challenges: implementing an EMS protocol; staffing (RN, LNA) over the last two years as census has doubled
Richard Austin, retired physician, Death-With-Dignity Campaign Challenge: persuading people in hospice/palliative care that Death-With-Dignity is a supplement to hospice, not a replacement – people want control over the process of dying and are not scared of dying but the process
Wendy Bayles-Dazet, Director of VNA/VNH in White River, new to job (3.5 weeks) Goals: carrying on the tradition of the VNA/VNH, strengthening ties to DHMC and nursing homes, recruiting and retaining nurses as staffing has been an issue
Ginny Fry, Director of the Hospice and Palliative Care Council of Vermont Accomplishments: changing the organization’s bylaws to allow interested parties/individuals to join the council Challenge and accomplishment: seeing more children dying at home, care and bereavement for them
Letha Mills, Director of SW Vermont Cancer Center Goals: hoping to be medical director of Bennington’s own hospice as Bennington is breaking away from Rutland Accomplishments: palliative care initiative is now a coalition, have standing orders and guidelines which will be on local intranet – SWMC owns VNA, nursing home, hospital and practices – can help coordinate Challenge: budget -- could not fund NP
Marilyn Hart, Director of CV Hospice, internist Accomplishments: have started a palliative care center at CVH – has brought a Chaplin to CVH, have standing orders and a palliative care consult team; have applied for two grants – now need part or full-time dedicated employee to oversee work; DWD has helped increase discussion about palliative care and end of life care in general
Marilyn Rinker, Program Director for Norwich School of Nursing Challenge: being able to provide clinical placements for students
Joan Madison, Madison-Deane Initiative Accomplishments: ending one year grant from community health center – have created a resource guide that will be on VNA website & ten minute presentation on palliative care; possible extended funding for next year for state-wide guide Challenge: to get the information to the people who need it most
Jessa Block, Vermont Medical Society Goal: to expand and broaden membership of ExCEL
Madeleine Mongan, Vermont Medical Society Accomplishments: what ExCEL has been able to achieve – discussed in detail below Challenge: staffing and funding for ExCEL – Rallying Points could help
Sharon McDonnell, CDC, VDH, DHMC Challenge: incorporating end-of-life care into public health and incorporating public health into clinical medicine
Diana Peirce, CV Home Health and Hospice Accomplishments: palliative care team at CVH – has led to decreased use of palliative care team and ethics team showing that education and outreach has worked; Death With Dignity has opened up discussion around end-of-life care; CV Hospice has created a children’s initiative – has seen it work and now get many more children Challenge: having more children -- “be careful what you wish for” -- has been a challenge for staffing, for having to collaborate with new teams, staff support
Denise Niemira, Chair of Northeast Kingdom Palliative Care Initiative, family physician from Newport Accomplishment: putting together pamphlet on resources for bereavement, it is now being handed out by hospitals, nursing homes and hospice; initiative to study families’ satisfaction with end-of-life care and bereavement services – survey sent out to next-of-kin and compiled -- Denise will share letter and survey with those interested Challenge: money and time to continue with work
Jill Lord, Director of Patient Services at Mt. Ascutney Hospital Accomplishment: building a strong hospice care program; investigation of establishing a regional hospice hostel -- study demonstrated that they do not have the population yet to establish one, but the study furthered the discussion and they are still are trying to build a regional network in the area; establishing a hospice nurse study group to become certified Challenges – standardization of excellent care throughout region, standard pain and symptom management guidelines, etc.
Diana Peirce, CV Hospice Follow-up on Jill Lord’s comments: Hospice offers certification for nursing assistants, as well; Hospice helps pay for materials and test taking for nurses wanting to be certified; there are reimbursement incentives for individuals to become certified, as well; certification testing is a good opportunity for NH/VT collaboration, especially because if you have more than 10 people you do not need to go to Boston for testing and can use your own site; Diana added that it is great to see nursing home nurses taking hospice training
Diana Peirce of CV Hospice provided a history of ExCEL. ExCEL was initially called the Vermont Palliative Care Initiative. The group grew out of the Vermont Medical Society (VMS) ethics committee in 1997, in response to a physician assisted suicide bill that was introduced that year. The meeting of the group led to drafting the initial (and still in effect) VMS policy on physician assisted suicide.
Hospice has been part of this committee from the beginning; in fact, the whole group (VMS, Hospice and other partners) met for the first time at the Hospice Annual Meeting. At that meeting, the group created goals, a steering committee and task groups. The task groups were created to address 4-5 priority tasks that had been identified and discussed during the annual meeting. ExCEL was the most effective when these task groups were actively meeting and the group has tried to keep the task groups meeting, but it has been hard to maintain momentum and secure funding.
ExCEL has achieved some significant accomplishments, for example work facilitating DNR initiatives around the state and getting standing orders in hospitals. It is now time for ExCEL to expand and become more active. There were companion bills introduced in the legislature this year to create a Palliative Care Commission (H.419/S.181). Diana believed that ExCEL was already filling this mission; she wrote to the legislators who introduced the bills and told them that ExCEL could fill this need; they agreed not to bring up the bill during the session. To meet the standards of the bill, ExCEL needs to continue to broaden and strengthen membership. Committee members worked to invite new members over the 6 weeks leading up to this meeting; new members include hospital reps, DAD reps, and the attorney general’s office.
Madeleine Mongan of the Medical Society gave a brief report on the recent conference she attended of the national organization of attorneys general, focused on end-of-life care. After the conference, Bill Sorrel approached Madeleine with a genuine interest in partnering to work on an end-of-life care initiative. Madeleine was initially concerned about the AG’s prosecutorial role being a chilling influence on palliative care, rather than supportive. She now believes that the AG’s office has legitimate interest in a palliative care initiative modeled on their past initiative related to financial exploitation of elders. Diana reiterated the concern that hospice community has with working with AG’s office. However, she passed along the message that Linda Purdy, the Assistant AG involved in this initiative, wants to emphasize the AG’s desire to support good end-of-life care. A member present stated that this is work by the consumer protection branch of the AG’s office and it makes sense that they want to prevent consumers dying in pain
Diana restated the fact that initially the AG’s office and legislature did not know that ExCEL existed, so it should be an ongoing job for ExCEL to get its name into the public and invite people to join in its work
In collaboration with VEN, ExCEL visited 10 hospitals with trainers for 1 and 2 day sessions on advanced directives. Seminars emphasized shared decision making and the importance of the process of advanced planning; they want to get people to think about advanced planning before they are in crisis mode. VEN can continue to do these presentations or re-visit places that want an update. VEN also wants to collaborate with AG and VMS regarding broad goals of end-of-life care. More specifically, VEN wants to study the effectiveness of advanced directives -- not just numbers of people who have them, but what have been successes and failures in facilitating discussions with medical communities. For example, living wills have not been very effective because they are vague and do not appoint an advocate. VEN does not have a large budget but it is collecting funds and preparing to start the project. John handed out draft of study design.
In addition to notes from Joan Madison’s introduction, the MDI is working on a Hospice Pioneers History Project – a video and national public radio documentary -- Cicily Saunders, Elizabeth Kubler-Ross, Dr. Balfour Mount, and Florence Wald have already been interviewed for the documentary. The premiere of the video will be on Friday, September 19th in Burlington. The MDI hopes to use the video for educational programs into the future.
Medical Marijuana – a bill did not pass last year but the legislature created a summer study committee which published a report in the fall; Diana Peirce sat on that committee. A bill was introduced this year and passed the Senate but did not pass House. The House is not planning to bring the bill up this session. Diana believes that even if it had passed the legislature, the governor would have vetoed it.
Palliative Care Commission bill – as discussed earlier, Diana hopes ExCEL will make the Commission unnecessary.
Death with Dignity and opposing bill Dr. Babbott: the challenge is to be heard and facilitate an open-minded dialogue; he hopes that the legislature will hold a hearing; he does not want people to think that DWD is a substitute for good palliative and hospice care Dr. Austin: there is interest in the issue and he believes there will be a hearing in the Senate next year Madeleine Mongan: VMS is sponsoring a minimum of 6 hearings around the state for physicians to discuss physician assisted suicide, with speakers on each side and a moderator; a VMS staff member will present facts regarding the bills that have been introduced and the VMS current and draft policies. The forums will help focus physicians’ debate and the discussion surrounding whether VMS should take a position on assisted suicide at their annual meeting on October 17th and 18th. Angel Collins: There should also be input gathered from the general population and education provided for the public and physicians.
DHMC - Fran Brokaw: DHMC has received ENABLE 2, a five-year grant following up on Project ENABLE. ENABLE 1 was funded in part by The Robert Wood Johnson Foundation. Both the Norris Cotton Cancer Center (NCCC) and the Hospice VNH worked on the project with the goal of empowering cancer patients and their families to take full advantage of clinical and other palliative services from the time of diagnosis. ENABLE 2 will compare combinations of interventions with cancer patients (group medical appointments, workshops, phone-based follow up) to a control group.
FAHC – Madeleine reporting for Zail Berry: Zail sent VMS the Pain and Symptom management guidelines that FAHC follows; Dr. Bob Orr sent the physician order POLST forms that FAHC follows. Zail and Bob are also involved in educating the medical students and residents about palliative care and medical ethics.
ExCEL should be a clearing house for training/updates from around the region
Diana Peirce: What EMTs need in order to not automatically resuscitate (if someone panics and calls ambulance, when patients are being transferred, etc) is a signed physician order. Last year, a team from ExCEL drafted a model form and then sent it on to the Commissioner of Health. The past Commissioner would not implement the forms on a state-wide level, so ExCEL tried to get regions to implement the project – either hospice regions or EMS regions. The groups contacted were encouraged to provide their regions with education and forms. Some regions have implemented the plan well, some have not made much progress. Diana is now sending surveys to groups including hospitals, EMS directors, nursing homes, and hospices, and will collate them to see how well policies have been implemented. In addition, Diana hopes that the new Commissioner will help coordinate where there are holes and help ensure consistency around the state.
i. Groups in Process
- out of institution DNR – see above - guidelines/standing orders – need to reenergize this group and get a clear sense of what is happening around the state, in each of our hospitals – VMS is beginning to collect policies from hospitals
ii. Successful groups - certification of nurses and physicians - pain as a 5th vital sign - not standardized, but hospitals have created guidelines, etc - mission statements – hospitals to include pain management/palliative care in mission statements - VEN’s regional groups – “explainers” who can educate around the state
The group came up with task groups by identifying commonalties among the challenges mentioned in introductions, and then prioritizing those issues identified. Five task forces were identified: education, standardized assessment, funding, legislation and coalition building. The task forces met and discussed, then presented, objectives as reported below:
Education Goals identified by entire group: community education, transitioning from palliative to hospice care, expanding AICC, normalizing palliative care across the care continuum, nursing reorientation, PAS education and PAS seen as supplement to EOL care, end of life and public health integration, access for children Task force co-chairs: Letha Mills and Marilyn Hart Goals of task force: PAS, Children’s Needs, expanding AICC, spreading word of ExCEL (create brochure, media, health fairs), access across the continuum of care (regional 800 #, media, replicate resource guides, etc) Priority objective: brochure defining ExCEL Next step: need to better define mission of ExCEL, define members; identify funding to create and distribute brochure
Standardized Assessment Goal identified by entire group: Evaluation of services/QI Task force members: no task force was created Objective identified by entire group: samples of surveys/eval tools will be shared. Denise Nemiera, Diana Peirce, Jill Lord, Sharon McDonnell and funeral directors have samples.
Funding Goals identified by entire group: institutional financial issues, funding for staff, if ExCEL is funded what could it do with the money to help regional groups, Rallying Points grant Task force members: Jessa Block, Madeleine Mongan, Denise Niemira, Fran Brokaw Priority objective of task force: Rallying Points funding for an ExCEL conference Next steps: identify topic; identify timeline; make sure to coordinate with – or connect to - FAHC, UVM, Hospice conferences
Legislation Goals identified by entire group: achieving a balanced view of PAS, medical marijuana, AHS reorganization; get end-of-life care on radar screen; work on a Medicaid waver; coordination with AG’s office Task force members: Jill Lord, Marilyn Rinker, Richard Austin, Sharon McDonnell, Dick McCormack, David Babbott Priority objectives: clarify who drafts ExCEL statements on legislative issues -- whether there will be a sub-committee, steering committee, etc; ExCEL should take positions on physician assisted suicide (possibly revisiting 2/21/03 statement, ensure dialog and balanced statement), medical marijuana, and AHS reorganization (urging AHS to take into account excellent care at the end of life)
Coalition Building Goals identified by entire group: expanding the players, standardization, regional gaps, coordination with AG and public institutions (corrections, community mental health, etc), spreading word about ExCEL Task force members: no task force was created
Presentations of task forces led to the following discussion points: - It seems that ExCEL is becoming separate from VMS; for example, taking positions on legislative issues that might not be the same as VMS positions. Therefore, what will structure be? What will support staff be? Are we no longer committee of VMS? - One member thought ExCEL was a clearinghouse for discussion, a place to get information, funding to provide community education, etc. Therefore, ExCEL should not take positions of issues. - need to sit down and define what ExCEL is - need to have a follow-up meeting. In the meantime – keep communication open – email, web-site, mailings - Could use Rallying Points funding to have a meeting to discuss governance, structure, etc Discussion ensued regarding relationship of ExCEL to the VMS and what the ramifications are for the currently proposed position statement on death-with-dignity; the statement could reflect that ExCEL is considering changing structure and may take its own opinion – describing that group who formed this statement was part of VMS and grew out of the Ethics Committee and it is not a position that has been adopted by ExCEL
Afternoon into evening meeting; try to get the rallying points funding for dinner and speaker to connect with this meeting and discuss structure, mission of ExCEL. Will propose dates when we determine if and when we can get funding.
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Vermont
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