Gilchrist Kids` Pediatric Volunteers:
Transcription
Gilchrist Kids` Pediatric Volunteers:
The Monthly Membership Publication of the National Hospice and Palliative Care Organization April 2014 Inside From the Volunteer’s Perspective Hospice volunteer, Jai Eileen Swyter, recounts a connection she made with a dementia patient in the most unexpected of ways, reinforcing the importance of active listening, patience, and compassion. NCHPP Volunteer Management Mentorship Program The Steering Committee for the NCHPP Volunteer/Volunteer Management Section launched a Mentorship Program last June. Learn more about this program and how to benefit — as a mentee or mentor. Short Takes • Volunteer Conference Sessions Now Available on E-OL • NHDD Now 7 Years Strong • Help an Exemplary Volunteer Get National Recognition Gilchrist Kids’ Pediatric Volunteers: A Message From Don Gaining as Much as They Give Member News By Deborah Geffen Jones, NCBF Compliance Tip Links to Resources on the NHPCO Website A Feel-Good Moment! News From NHF H ospice volunteers have been known to inspire all of us at different times and through different experiences. Among the most inspiring, however, are the volunteers who can rock an infant to sleep or sing to a toddler, knowing the child will die very soon, or the volunteers who spend countless hours at play with the siblings of a dying teenager to help engage and distract them. As the volunteer services manager for Gilchrist Hospice Care, I have had the privilege of working with these pediatric volunteers since July of 2010, when our program, Gilchrist Kids, was launched. In this article, I share the many ways they support the program and the specific training that prepares them for it. But I also share some of their honest and heartfelt feedback on doing this emotionally charged work. continued on next page continued from previous page Gilchrist Kids offers a full range of hospice interdisciplinary services to terminally ill infants, children and teens in central Maryland, involving all members of the hospice team: nurses, social workers, child-life specialists, chaplains, bereavement counselors and volunteers. Our pediatric volunteers have worked in the Gilchrist Kids program since its inception and, today, we have 35 who support patients and families in a variety of ways: • Providing companionship to the patient • Supporting the caregiver and lending assistance with chores, pets, etc. • O ffering complementary therapies, such as pet therapy, Reiki, or gentle ‘Caring Touch’ massage • Playing or singing music at the patient’s bedside • Supporting the patients’ siblings • Doing hands-on care, including cradling or rocking • Helping with memorial service planning • Supporting other members of the interdisciplinary team • Collaborating with child-life specialists • ‘Being there’ during the patient’s last hours. These volunteers share the same overarching goal of every other member of the Gilchrist team: To make each child’s comfort and care a priority while providing family and friends with the emotional and spiritual support they need during this most difficult time. “I could not do the work I do without our compassionate volunteers,” says the Gilchrist Kids team manager, Holly Herring. “There have been countless times that a family has needed a meal prepared, someone to read a book to their child, provide a gentle massage through Caring Touch, or just someone to sit and be a friend, and our volunteers do that graciously.” continued on page 4 2NHPCO NewsLine The Positives in Part D O n March 11, NHPCO released a Regulatory Alert detailing CMS’s final guidance on “Hospice and Medicare Part D” — along with a Compliance Guide that discusses specific steps that hospices should take to meet the new regulation. If you haven’t yet reviewed the Guide, I urge you to do so now, and save the PDF for future reference. Certainly, the Part D issue has been time-consuming, difficult, and very upsetting for all of us since it arose last year. What I want to reinforce here, however, is that your feedback made a tangible difference. We appreciated the information that many members provided during meetings, conference calls and via email, particularly medical directors, and members of the Quality and Standards Committee and the NCHPP Pharmacist Section. This information was included in our formal Comment Letter to CMS on January 10. But, additionally, we shared your feedback in a range of other ongoing discussions — with CMS officials, Congressional supporters on Capitol Hill, and in my personal meetings with CMS Administrator Marilyn Tavenner. As we focus attention on what must now be done to meet the new regulation, please recognize that the four key things we asked for were indeed granted: 1. More time to implement the guidance 2. Beneficiary-level prior authorization 3. A uniform process (and document) for prior authorizations 4.Deference to the hospice (via the hospice physician) to determine drug relatedness. CMS has either put into place or started a mechanism to ensure these requests are addressed. Note too that Part D plans (per CMS direction) will not attempt to recoup any drug payments made in 2013 or through April 30 of this year. As we look ahead, NHPCO is clearly concerned about the toll this regulation will take on hospices, their staffs, and on patients and families. I also expect that further battles may be in store on the larger issue of drug relatedness. But, right now, it’s important to recognize that compromises were made — and were brought about by our collective efforts. Last but not least, it was a pleasure seeing many members at MLC in late March. With the demands at home, I was appreciative of this time together. J. Donald Schumacher, PsyD President/CEO NHPCO NewsLine 3 continued from page 2 How We Prepare Them In many cases, our pediatric volunteers have experienced the death of a child themselves, so they bring to their role a special compassion, a comforting presence and deep understanding — all of which help our families gain the confidence they need to care for and support their own children. However, all of our pediatric volunteers are screened to meet specific qualifications and must also attend pediatric-specific training. Our Screening Criteria: Some of the criteria is specific to our pediatric volunteers, while some apply to all volunteers: They must support the hospice philosophy: Volunteers must recognize that dying is part of the natural cycle of life and that hospice is life affirming, providing as much quality of life as the disease allows. They have to have worked through their own losses: If individuals have experienced the loss of a child, they must wait two years before volunteering in the pediatric program. They need a high level of self-comfort in dealing with death and dying issues with the youngest hospice patients: Volunteers must not only embrace the hospice philosophy, but understand they will be supporting young people of all ages, from newborns to young adults. They must be non-judgmental: Volunteers need to be respectful of diverse cultures, races, faiths and lifestyles. In addition, they must be accepting of a wide range of coping strategies, and various degrees of education among patients and families. 4NHPCO NewsLine They must take the general hospice volunteer orientation: Volunteers must complete the basic hospice orientation program before being considered for pediatric training. They must be able to demonstrate good listening, communication, and organizational skills: Volunteers must be able to “meet” the patient and family wherever they are by understanding that everyone has their own distinctive communication styles and boundaries. Volunteers need to fully understand what active listening means, even without a word being said. They must be flexible and dependable: Volunteers must work competently and be committed to the work through various degrees of supervision. continued on next page NHPCO NewsLine 5 continued from previous page The Training Requirements: Once volunteers meet the above qualifications, they are expected to take Gilchrist’s pediatric volunteer training. The training includes the following 13 components which are covered in 10 hours over a course of three sessions: 1.Introduction to Pediatric Hospice Care Addresses the differences between hospice care for children and adults. 2.Complex Needs of the Pediatric Patient Addresses the various issues that arise in this young population. 3.Causes of Childhood Deaths Defines the various types of terminal illnesses in children versus adults. 4.Patient and Family Rights in Terminal Care Addresses legal and ethical issues specific to pediatric care. 5.Developmental Stages and Needs of Children and Death Concepts Defines the different degrees of cognitive development and the death concepts at various ages. 6.Facts about Childhood Pain: Myths Related to Neonatal and Infant Pain Defines how pain is managed for the pediatric patient. 6NHPCO NewsLine 7. Complementary Therapies Discusses the various therapies that help address various symptoms including pain. 8. Patient and Family Education Covers the various ways to help educate the patient and family. 9.Spiritual and Cultural Considerations Defines and reviews the components of various faith and cultural communities. 10.Factors Influencing Communication Styles Defines how children communicate and how to develop strong listening skills. 11. Death Vigil Defines how end-of-life doulas can be a supportive presence. 12.Boundaries Defines the importance of boundaries and the ways to maintain them. 13.Bereavement Defines how bereavement supports the parents and extended family. A Spiritual Time Pediatric volunteers often tell of the profound ways these youngest of patients touch their hearts and souls. After having rocked a dying infant, a Gilchrist Kids volunteer wrote: “Participating in the beginning and at the end of someone’s life is very spiritual. Rocking the baby made it very clear…the awe of the newborn and the awe of dying at the same time. It was magical, inspiring and very profound.” Another volunteer wrote of her experience in companioning an eightyear-old girl: “It was an honor to be part of her care. I will always remember her big beautiful eyes and her smile and the way her face lit up when I sang ‘You Are My Sunshine.’ It was an experience that I will never forget. She truly touched my heart.” These individuals who donate their time and their talents tell us how much they receive from doing this work. They tell us they are continually reminded of the complexities of life and death — and all the unanswerable questions in between. They believe that being with a pediatric hospice patient is a spiritual time, and find strength, wisdom and beauty from the experience when they are able to put all judgments aside and simply be in the moment with the patient and family. They find strength, wisdom and beauty from the experience… “We are truly grateful to have such a strong group of volunteers caring for our youngest patients and the loved ones they will leave behind,” said Gilchrist’s director of clinical services, Regina Bodnar. “Every day, Gilchrist staff is in awe of the hours they dedicate and all they contribute.” As Dr. Martin Luther King, Jr. once said, “Everyone can be great, because anybody can serve. You only need a heart full of grace. A soul generated by love.” Deborah Geffen Jones was one of the founding employees of Gilchrist Hospice Care, the largest hospice organization in the state of Maryland. She currently holds the position of volunteer services manager, a job she accepted after more than a decade spent developing the organization’s bereavement program and serving as a bereavement counselor. She is also an experienced community educator and frequent presenter at both local and national conferences as well as the author of several educational publications. She can be reached at [email protected]. NHPCO NewsLine 7 Since 2009, Jai Eileen Swyter has served as a volunteer in the palliative care and hospice program at Goodwin House, a continuous care retirement community in the Washington metropolitan area. She earned her PhD in medical anthropology and bioethics, and her professional career included work with dialysis patients. As part of this work, she was developing hospice concepts long before hospice had found its way to this country, and also had the opportunity to train with Dr. Elisabeth Kübler-Ross who deeply inspired her. Now, in being a hospice volunteer, she has been able to resume one of her life’s passions. In this article, she recounts a connection she made with a dementia patient, one that reinforces the importance of active listening, patience, and compassion. Dementia and the Hospice Volunteer: AN ALTERNATE WAY TO CONNECT By Jai Eileen Swyter, PhD 8NHPCO NewsLine t is well known that people with dementia respond to pictures of themselves or family, or to photographs of places they have lived or known. This is an account of a person with advanced dementia and her response to pictures she had never seen before. Ann B (not her real name) was a woman in her nineties referred to hospice care for “failure to thrive.” I was the hospice volunteer assigned to visit her. Ann’s dementia was at the point where ordinary conversation was difficult. She responded to my questions with short, mostly understandable comments. When she initiated conversation she would manage only a few words before she lost her thought, stopped, then put her head down in frustration. Often everything she tried to say was unintelligible. During our visits I noticed she stared intently at the Northwest Coast Indian jewelry I enjoy collecting and wearing. I could not tell if she was attracted to its unusual design or simply its silvery shine. On impulse one day I took an exhibit catalog of Northwest Coast Indian artifacts with me, thinking she might enjoy seeing other things made by these people. Photo of Northwest Coast Indian medallion: Mirela Turko I Ann’s dementia was at a point where ordinary conversation was difficult… We explored the book together. I described what she was seeing continued on next page NHPCO NewsLine 9 continued from previous page as in “This is a dance mask of a bear. You can see its little ears and sharp teeth. The dancer puts this on his head and moves like a bear...” Ann studied each picture thoughtfully as we slowly worked our way through the book, enjoying each artifact in turn. She stayed focused and engaged about 30 minutes each time — which was long for her. Ann grew up on a small tobacco farm in the South. I grew up in a rural part of Washington State, 90 miles north of Seattle, but not on a farm. My next offering was a book of photographs from this rural area, thinking Ann might enjoy pictures of farm life. With a picture in front of her, Ann could tell me about her farm. Her speech was coherent and intelligible. While her sentences were simple, she never lost her train of thought. She correctly identified various crops, the ones she liked best and whether or not they grew on her farm. She pointed out equipment that indicated a 10NHPCO NewsLine commercial farm (which hers was not) and responded warmly to a picture of a horse-drawn plough. With an unfamiliar picture “out there” as a “prompt” or reminder, she was able to talk easily. Without it, she lost her thoughts or responded with one or two words to my questions. A Northwest Coast Indian teaching story from Haida Gwaii, Frog Girl by Paul Owen Lewis, was my next selection. The illustrations were extraordinary and carried the story with little need for text. I was curious if Ann would understand this book as a story or as individual pictures on each page. While she could still read, I chose to tell her the story, pointing out details in the illustrations that were mentioned in the story. Ann’s attention was focused, her comments clear and appropriate. When water in a lake was being lifted up so humans could go to the land beneath the water, she was astonished. “I’ve never heard of such a thing,” she said. When we got to the end she said, “That was an amazing story,” and wanted to go through it again. As a young woman, Ann flew a small single-engine airplane for pleasure. When I asked what places she had flown to, she could not name any. When I brought a map of southern states she could easily tell me what cities and towns she visited, the quality of their airports (mostly grassy fields) and the difficulties of landing or taking off from each. Without the map as a “prompt,” this information was not accessible to her. When I asked Ann if she liked these books and maps I brought, she responded with enthusiasm. “Oh yes! They are so different.” “Different” I could do and we continued to explore a variety of books. She had always possessed a curious mind and this approach seemed to tap into it, connecting with a still fairly functional part. For a final example, I knew Ann worked for a while in India, so I brought a book on Asian sacred places. While she did not recognize the various temples and shrines, she did see sari-wearing women in some of the pictures. She then told a humorous story of her efforts to get dressed in a sari and to keep it properly in place during the day. Had I asked her directly if she ever wore a sari, I would have gotten a one- or twoword response without the detail and humor of her experience. After about seven months this connection slowly faded until books became overwhelming and so we stopped. But the deep companionable relationship we forged during our “book time” continued even as her condition deteriorated. As she neared death, I thanked her for letting me share this last part of her life’s journey. I told her how much I enjoyed my visits with her and spoke of the “different” books we had explored together. She listened intently, nodded silently in agreement, reached for my hand (a difficult movement for her), raised it to her lips, and kissed it. It felt like a thank you and a goodbye. At this writing, I have not tried this approach with any other person with dementia. It may be unique to Ann B. But I hope this account will inspire other volunteers to try this way of connecting when conversation falters. It felt like a thank you and a goodbye… The author extends special thanks to Ann B’s family for their kind permission to share this experience. For Further Reading: While circulating a draft of this paper for comment, I was directed to the website of Naomi Feil, MSW, ACSW. The website describes her theory and method of validation and her extensive research. My experience with Ann B fits well with Feil’s, and strongly suggests my approach will work for others with dementia. NHPCO NewsLine 11 From the NCHPP Volunteer/Volunteer Management Section* The A Volunteer Management Mentorship Program s we look back on 40 years of hospice care in America, we can do so with great pride. There are now several thousand hospice programs, many of which were launched by groups of passionate volunteers who wanted to apply the principles of Dame Cicely Saunders to care of the dying in this country. But the hospice landscape of today is a much different one. As the NCHPP CEO/Executive Director/President Section has observed: By Kathy Ising, CAVS he need for hospice care is • T only going to increase in the coming decades egulation and reimbursement • R issues are growing ever more complex, and ew and well-prepared • N leaders are needed as hospice’s visionary leaders retire. In response to these emerging issues, the Steering Committee for the NCHPP CEO/Executive Director/President Section created a CEO Mentoring Project in 2008. The Project defines “mentoring” as “a collaborative, supportive, goal directed relationship that enhances the mentee’s competence in performing the responsibilities of his/her job and advances his/her professional growth and development.” Further, it matches and connects experienced hospice leaders (mentors) with new hospice professionals (mentees) to meet the mentees’ needs for information and support, and to assist them in their professional development. The success of the CEO Mentoring Project has encouraged other NCHPP Sections to develop their own mentoring programs. Led by their respective Steering Committees, the NCHPP QAPI and Bereavement Professional Sections have each formed mentoring programs, and in 2013, the Volunteer/Volunteer Management Section also followed suit. *The National Council of Hospice and Palliative Professionals (NCHPP) is comprised of 15 discipline-specific sections that represent the staff and volunteers who work for NHPCO provider-members. To learn more about this NCHPP Section, visit the NHPCO website. 12NHPCO NewsLine Why a Mentoring Program for Volunteer Managers? Volunteer directors, managers and coordinators are accountable for a workforce that is not only essential and valuable in a climate of decreasing reimbursements and market competition, but is also mandated by Medicare. In fact, the management of volunteers in a hospice setting differs from all other health care settings, largely because of the Medicare mandate. Per Regulation 418.78 of the Medicare Hospice Conditions of Participation, hospices are required to incorporate volunteer services into daily patient care and routine operations. This requirement — along with the requirement that volunteer hours equal or exceed 5 percent of the total patient care hours of all paid employees and contract staff — serves to ensure that hospice programs fully integrate volunteers into the organization. The Medicare regulations also impact many other areas of volunteer management, including the content of volunteer training and orientation; the tracking of volunteer health requirements, such as TB tests and flu shots; and volunteer updates to the patient’s plan of care. In addition to making sure their organizations are compliant in these areas, volunteer managers must also search for best practices in the implementation of their programs. Looking at the “big picture,” they must be able to discern how to best retain and support hospice volunteers in work that is deeply meaningful and brings with it the experience of loss and suffering. Another challenge is the varied experience of hospice volunteer managers. Unlike nursing and psychosocial staff, volunteer managers come from a variety of backgrounds that, while valuable, don’t always prepare them for the range of skills they need to effectively manage a volunteer program. At Hosparus, for example, members of our volunteer team have previous experience in church and nursing home administration, teaching, and nonprofit management. Not Yet Familiar With NCHPP? NHPCO’s National Council of Hospice and Palliative Professionals (NCHPP) is an interdisciplinary-focused forum that supports NHPCO members in their work. Fifteen discipline-specific sections comprise NCHPP, and each offers a variety of resources, education and networking opportunities, such as the Mentorship Programs described in this article, monthly conference calls, networking through My.NHPCO, and more. As an NHPCO member, be sure to join the Section (or Sections) related to your discipline. It’s a benefit of membership! To learn more, visit NCHPP on the NHPCO website. Oftentimes, the hospice volunteer manager is a one-person team, with no collegial support to assist them in managing the volunteer workforce. continued on next page NHPCO NewsLine 13 continued from previous page A Closer Look at the Program With assistance from NHPCO staff, the Steering Committee for the NCHPP Volunteer/Volunteer Management Section, led by Section Leader Sandi Huster, designed and implemented the Section’s Mentoring Program. The committee members developed the program description, topics and resources for the mentors and mentees, and the application requirements. They also collaborated with the other Sections which have mentoring programs, and created measurements for program evaluation. After many emails, conference calls and hours of work, the Mentoring Program was announced to potential participants in March of 2013. After an ad-hoc group of committee members assumed the task of reviewing and matching mentors and mentees, the program was officially launched in June of 2013— with an orientation for the initial 15 mentors and 17 mentees. (Two mentors generously agreed to take on an additional mentee.) 14NHPCO NewsLine How It Works: The program calls for a six-month commitment, with an option of extending it to one year. Mentors are matched with mentees based on how well their strengths align with the mentees’ needs. In addition, the program seeks to match people from similar organizations, based on agency size, type, and incorporation, as well as other factors. At the start of the program, the mentees identify three goals they want to achieve, and receive guidance and support from the mentor through a monthly phone call and ongoing e-mail communication. The participants also agree to give feedback on their experiences at the end of three months, and at the conclusion of the program. The Initial Feedback The first group of mentees completed the program in November of 2013, and feedback from both the mentees and mentors was quite positive. When asked what was going well, mentees reported: “Collegial exchange with my mentor is fantastic...and I am learning approaches I would not consider if not for his input.” “Lots of great ideas [and] suggestions for efficiency.” “My mentor has given me great advice and options.” “Knowing there is someone with more knowledge and experience in hospice volunteer management available for consult.” Mentors shared the following: “My mentee and I seem to communicate well, and I think that we are both benefitting from the experience.” “I have been able to share some new ideas with my mentee, and her hospice is implementing them. I think the Steering Committee has done a great job setting up the program.” “I feel like I have helped my mentee be more confident.” “I have found the working relationship with my mentees to be a source of renewed creative energy.” When the Steering Committee asked participants to suggest ways in which the program could be improved, many suggested “more time together,” ideally faceto-face meetings. Lastly, all 32 participants said they would recommend the program to others. Looking Ahead The Steering Committee launched a new group of mentors/ mentees in February, and the 18 participants (9 mentees/ 9 mentors) will complete the program in July. The application period for the program is now closed, but will reopen in June. An invitation to apply will be announced through My.NHPCO, with mentor and mentee applications due by July 1. Kathy Ising is a certified administrator of volunteer services and a member of the NCHPP Volunteer/Volunteer Management Steering Committee. A former hospice volunteer, Kathy joined Hosparus in 2009 and currently serves as the volunteer manager for special programs. Learn More: Visit the Section’s Mentorship Program webpage on the NHPCO website. Helpful Resources: NHPCO Hospice Volunteer Program Resource Manual Regulatory Resources for Volunteer Managers The Volunteer Regulations Revisited Volunteer 5% Cost Savings Information Sheet For additional resources, visit the Regulatory Center of the NHPCO website. NHPCO NewsLine 15 Short Takes Volunteer Virtual Conference Sessions Now Available on E-OL Fourteen sessions presented at the 2012 Volunteer Leadership Virtual Conference are now available as online offerings through NHPCO’s EO-L. For just $105 per offering, members can share the valuable insights and guidance at team meetings or at more casual brown bags. It’s an affordable way to bring teams together and encourage both personal and professional development. So What Am I Supposed to Do? Working With Non-communicative Patients/Families Religion and Spirituality at the End of Life Surviving Ourselves — Change, Loss and Self-compassion Hospice Volunteer Training: Increasing the Effectiveness of Your Training Program From Compassion Fatigue to Compassion Satisfaction Dotted Lines, Curbs and Guardrails – Boundaries for Volunteers E xtraordinary Ideas to Kindle Your Volunteer Program Today Engaging with Faith: Multiplying Volunteers Through Effective Faith Community Outreach Beyond the Medicare Benefit: Leading Hospice Volunteer Programs the Hospice Way Raising Your Ethical Antennae Complementary Therapies: Designing, Funding, Training and Integrating a Volunteer Program into Your Hospice Services Facebook, Email & Blogging: Getting and Keeping Volunteers Reminiscence: A Valuable Resource for Bereavement and Long Term Care Planning A Single Mustard Seed: Contemplative Approaches to Grief and Loss Use the links provided to learn more about each offering, and follow the prompts to register and purchase one or more. You will then receive a confirmation of your order, with a link to access the offerings from the E-OL website. Questions? Contact the NHPCO Solutions Center at 800-646-6460 (8:30 a.m. to 5:30 p.m., EDT, Monday through Friday). Short Takes continued on page 18 16NHPCO NewsLine Volunteers! NHPCO NewsLine 17 Short Takes continued from page 16 NHDD: Now 7 Years Strong Wednesday, April 16, marks the seventh annual National Healthcare Decisions Day, a day to inspire, educate and empower both the public and providers about the importance of advance care planning. NHPCO applauds the many organizations which are doing their part to raise awareness, especially those like Alive Hospice in Nashville, TN which, through its Gift Initiative, is raising awareness throughout the year. Findings from a study, just published in the January 2014 edition of The American Journal of Preventive Medicine, is also incentive to keep up the momentum. The study analyzed data from more than 7,900 respondents to a HealthStyles survey, a mail panel survey designed to be representative of the U.S. population, and found that only 26.3 percent of survey respondents had an advance directive. Lack of awareness was cited as the most common reason a person did not have one. For members not yet involved in NHDD, visit www.nhdd.org for information — and help raise awareness of April 16 in your social media. To learn more about the study, see the NHPCO press release. Reminder Advance directives for every state are available on the website of NHPCO’s Caring Connections. Individuals may download single copies free of charge. Organizations that wish to download and distribute multiple copies should contact Caring Connections via phone (800-658-8898) or email ([email protected]). 18NHPCO NewsLine Help an Exemplary Volunteer Get National Recognition Each year, NHPCO’s National Council of Hospice and Palliative Professionals presents three awards to honor hospice volunteers who have demonstrated considerable commitment in terms of time, length of service and their assumed responsibilities. The awards are presented in three categories to honor patient and family service, organizational support, and teen service. Nominations can be made online, beginning in early summer, and the awards will be presented at the 2014 Clinical Team Conference in Nashville, TN. Please begin thinking about the volunteers in your organization who deserve this national recognition — and bookmark the Awards webpage for future reference: www.nhpco.org/volunteer-awards. For a look at last year’s winners, see November NewsLine. Awards are presented in three categories… Opal Phillips, recipient of the 2013 volunteer award for organizational support. NHPCO NewsLine 19 Member News and Notes Senator John Boozeman Gets Insights on Challenges Facing Providers Pat Ahern Named CEO of The Center for Hospice & Palliative Care Patricia Ahern, RN, MBA, FACHE, has been named the new CEO of The Center for Hospice & Palliative Care (Cheektowaga, NY). U.S. Senator John Boozeman, a long-time supporter of hospice in Arkansas, toured the Circle of Life Hospice Home at Legacy Village (Bentonville, AR) in February. As part of the tour, he met with CEO, Mary McKinney, and members of her executive team, who discussed a range of regulatory and reimbursement concerns affecting the entire hospice community. Kathy Davis Receives ELNEC Trainer of the Year Award Kathy Davis, PhD, RN, was one of only 12 ELNEC trainers to receive the ELNEC Trainer of the Year Award in recognition of her commitment to improve palliative care within her institution and community. Davis has provided care to children and families at the University of Kansas Medical Center, Department of Pediatrics, for over 30 years, first as a pediatric school teacher and more recently as the director of pediatric palliative care. She is also an active member of NHPCO, serving as co-leader of the Children’s Project on Palliative/Hospice Services and as faculty for NHPCO’s pediatrics training. In addition, she serves on the NHPCO Ethics Advisory Council. 20NHPCO NewsLine Ahern brings 30 years of health care experience to the program, having worked in both the acute care hospital and end-of-life care settings. Most recently, she served as president/CEO of Rainbow Hospice and Palliative Care in Park Ridge, Illinois. Hospice Volunteer, O.J. Metzgar, Receives Patriotism Award O.J. Metzgar, a volunteer with Hospice of the Plains (Wray, CO), has received the American Legion’s Patriotism Award for his exemplary service as part of the hospice’s Veteran Support Unit. Members of this unit support Veteran patients in a variety of ways, including “Certificate of Appreciation” presentations to recognize their military service. Metzgar was also commended for his work in rescuing military memorabilia and establishing a military museum room at the Brush Museum and Cultural Center. Hospice of the Plains is currently a recruit in NHPCO’s We Honor Veterans program. ADVOCACY INTENSIVE 6•1 6-1 7 •2014 THE NHPCO HAN Join us on Capitol Hill for this FREE two-day Advocacy Experience! The Hospice Action Network’s Advocacy Intensive is the hospice community’s chance to impart the value of hospice to our lawmakers, and for Hospice Advocates to help protect access to critical hospice services. This two-day event focuses on bringing the hospice story to Capitol Hill, and on educating the hospice community on the policy challenges we face, and how we can advocate for our services, and the patients and families we serve. For more information and to register, visit www.hospiceactionnetwork.org/intensive. Supported in part by: NHPCO NewsLine 21 Tip of the Month Part D Compliance: Where Do You Begin? O n March 10, 2014, CMS issued final guidance on “Hospice and Medicare Part D,” as NHPCO shared in a Regulatory Alert. Per the CMS guidance, hospices will be required to complete a prior authorization with Part D plans for all medications unrelated to the patient’s terminal illness and related conditions. To help providers prepare to respond to the prior authorization requirement, NHPCO also prepared a Compliance Guide, with details on nine key steps to take during the admission process: 7.Inform the patient or his/her representatives of liability and possible ABN 8.Inform the patient or his/her representative of appeal rights 9.Contact the patient’s attending physician or other prescribers. In addition to providing details on the above steps, the Guide also includes a suggested process for reviewing a patient’s medications once he or she elects hospice, as well as areas affected by the new regulation. Compliance Guide National Hospice and Palliative Care Organization Regulatory & Compliance www.nhpco.org/regulatory Incorporating Medicare Part D into the Hospice Admissions And Medication Managem ent Process Compliance for Hospice March 2014 Providers Hospice and Part D CMS issued final guidance on Part D and hospice on March 10, 2014. change admission and This final guidance will medication management processes in every hospice Medicare beneficiaries. that cares for This Compliance Guide provides hospice organizations with tools and suggested that will assist in compliance language with the Part D and hospice guidance. 1.Add appropriate language to the patient admission packet (sample language is provided) 2.Determine the patient’s Part D coverage and identify his/her Part D plan 3.Describe the process to patients, representatives and families 4.File the Notice of Election as soon as possible 5.Proactively contact the Part D plan immediately upon admission 6.Review all of the patient’s medications 22NHPCO NewsLine Federal regulations at 42 CFR § 418.202(f) stipulate that the Medicare Hospice only drugs and biologicals Benefit covers used primarily for the relief of pain and symptom terminal illness and related control for the conditions (the term “drugs and biologicals” 1861(t) of the Social is defined in section Security Act). Download the Compliance Guide now. The recently finalized (March 2014) CMS guidance on Part D and hospice providers to adjust their will require hospice admission and medication management processes beneficiaries. Effective for Medicare May 1, 2014, Part D plan sponsors are required drugs billed to Part D to reject all prescription for beneficiaries who have elected the hospice hospice notifies the benefit unless or until Part D plan, through the a prior authorization unrelated to the terminal process, that the medication illness or related conditions. is Once the plan sponsor authorization for drugs processes the prior unrelated to the terminal illness, Part D will process will be responsible if the claim. The hospice the drug is related to the terminal illness or beneficiary may be related conditions, or financially responsible the if the drug is related to hospice has determined the terminal illness but that it is not medically the necessary. The hospice collect during the admission will have new data process, and increased to documentation requirements determination of relatedness for the and the completion of the prior authorization forms. Suggestions for hospice provider admission process when a patient has Part coverage D 1. Patient Admission Packet… Add language to your patient admission that the hospice provider materials that states is required to review all medications when the Medicare Hospice the patient elects Benefit. Sample language: As hospice providers, we need to meet the rules that the Centers and Medicaid (CMS) for Medicare set for us. As of May 1, 2014, if you have Medicare Part D © National Hospice and Palliative Care Organization, March 2014 Page 1 Updates Based on Your Feedback: As hospices begin making preparatory changes to their processes, NHPCO recognizes that additional questions and concerns will arise. Please relay your feedback to [email protected] — noting “Part D Communication Issues.” The Guide will be updated accordingly. How can being an NHPCO Member save you money... NHPCO’s AFFINITY PROGRAM NHPCO members, their employees and volunteers can utilize exclusive benefits with partner programs to: w Enhance your NHPCO membership investment w Get discounted prices on products and services with partnering programs w Increase value in your organization Affinity Program Parnters: For more information: www.nhpco.org/affinity For membership information: (800) 646-6460 Advertisement HEALTHCARE HEALTHCARE CONSULTANTS CONSULTANTS A Feel-Good Moment Links to Some Resources on the NHPCO Website Quality and Regulatory Quality Reporting Requirements QAPI Resources Regulatory Center Home Page Fraud and Abuse Past Regulatory Alerts and Roundups Staffing Guidelines “Trailing Vines of Hope” Wanda Chiles has donated her time to the volunteer organization, Friends With Flowers of Kentucky, for the past six years. “We have arranged over 7,000 vases of fresh flowers and have delivered them each week to hospice patients in Georgetown and Scott Counties,” she said. This photo is of a notecard the volunteers received from a family member of a hospice patient. Inside the card, the person wrote: “When you think the whole world has fallen in on you, mere strangers appear and extend kindness and compassion.” Wanda photographed the note card as a reminder to the volunteer team of the precious gift they are indeed providing. It was submitted to NHPCO’s 2013 Creative Arts Contest by Hospice of the Bluegrass in Lexington, KY. 1731 King Street, Suite 100 Alexandria, VA 22314 703/837-1500 www.nhpco.org • www.caringinfo.org NewsLine is a publication of the National Hospice and Palliative Care Organization Senior Vice President, Strategic Communications............................................. Anita Brikman Vice President, Strategic Communications............................................................. Jon Radulovic Editor.......................................................................................................................................... Sue Canuteson Advertising Inquiries............................................................................ Karen Proffitt, 703/837-1500 Membership Inquiries.......................................................................................................... 800/646-6460 All past issues of NewsLine are posted online: www.nhpco.org/newsline. Copyright © 2014, NHPCO and its licensors. All rights reserved. NHPCO does not endorse the products and services advertised in this publication. Affiliates: Standards of Practice State-specific Resources Quality Partners Self-Assessment System Outreach 2013–14 Outreach Materials Social Media Resources LIVE Without Pain Resources Professional Education Education Home Page 2014 Webinar Schedule Upcoming Conferences End-of-Life Online Pediatric Palliative Care Publications Weekly NewsBriefs Monthly NewsLine ChiPPS Newsletter SPRING 2014 • CONTENTS NHF Donor and Hospice Volunteer Makes a Difference; page 1 We Honor Veterans Welcomes Two New Community Partners; page 2 Honor, Remember, Invest: The Tribute Project Well Underway; page 3 Running for a Cause; page 3 “I chose to give NHF a monthly gift because I believe in the dignity that hospice and palliative care provide.” FHSSA is Going Global; page 4 2014 NHF Gala Raises Funds to Support Global Partners in Care (Formally FHSSA); page 5 Mercedes Ibarra NHF Donor and Hospice Volunteer Makes a Difference Mercedes Ibarra shares why she supports the hospice mission Mercedes Ibarra is a true hospice champion and her support of hospice work is evident in her actions. In addition to giving monthly to the National Hospice Foundation, she also gives of her time volunteering with a hospice provider in Los Angeles, California. Ibarra is a professional Flamenco dancer. In one month, she lost three family members and found powerful healing in her life’s passion - Flamenco’s transformational, empowering lyrics and movement. Along with her passion to dance, Ibarra embarked on another life-changing experience involving hospice care. From a January 2014 blog post she writes: In January [2013], I decided to volunteer for hospice. The decision to go into hospice work was very intuitive. A combination of several recent deaths in our family, reading The Tibetan Book of Living and Dying, and a series of dreams (yes, dreams) led me to feeling like I was being called to hospice work. I am so glad and grateful that I was ready to respond. I have three patients I see regularly, plus a woman who is no longer a patient (her health improved), but is now my friend. I have learned so much about myself, people, relationships, fear, and love through this work. I now cannot imagine my life without it. In fact, I am now looking into how I can make it my life’s work along with Flamenco. A newsletter of the National Hospice Foundation | Spring 2014 Ibarra calls her volunteer work with hospice a blessing. “I feel I have developed such intimate relationships with my hospice patients, even though they sometimes can barely speak to me. They have made me realize not to take any moment for granted,” she says. The NHF Monthly Giving program in which Ibarra participates, allows donors to make a monthly gift to help make a difference in the lives of patients and their families. As a national organization, NHF funds programs and special initiatives that have a powerful impact on hospice and palliative care across the country. “I chose to give NHF a monthly gift because I believe in the dignity that hospice and palliative care provide,” she says. “Dying is the most important milestone we will all face one day. I think everyone deserves compassion, care, and respect during that time and a chance to die as comfortable and supported as possible.” 1 We Honor Veterans Welcomes Two New Community Partners Genesis HealthCare and Extendicare join the cause to help support Veterans and their families We Honor Veterans (WHV), a program of NHF’s affiliate the National Hospice and Palliative Care Organization in collaboration with the Department of Veterans Affairs, is helping thousands of professionals across America enhance their skills to meet the needs of Veterans. Originally designed for hospice providers, WHV has created a new ‘Community Partner’ opportunity for other community-based health care organizations providing direct care for seriously ill Veterans and their families. By joining WHV, Community Partners commit to providing the highest quality support to Veterans and their families through a potential four level distinction based on the level of involvement around Veteran education and interaction with Veterans by each location. alone. Extendicare offers a range of services that include nursing care and medical specialty services on an inpatient and outpatient basis. These specialty services include sub-acute care and rehabilitative therapy. Every Veterans Day the Recreation Department at Heritage Hall East, a Genesis HealthCare center in Massachusetts, puts on a special feast for the vets “in the house”. The vets are treated to a “Steak & Ale” luncheon. Administrator Major John Cotty, USAFR Veteran himself, recruits speakers who are currently in service to come and spend time with our vets. Another Veteran, Capt. Edward Peplinksi, USAFR (Ret.) brought his vintage 1951 War jeep. A slide show and patriotic music completed the event. Pictured above are: (seated) Veterans Abe Feinstein, USAF and Richard Kopyczynski, USMC. Standing are Lt. Col. Elizabeth Ryder, USAFR (Ret.), Capt. Peplinski, Veteran Albert DeGeorge, USN and Lt. Col. Diana Cooper, USAFR (Ret.) Genesis HealthCare Genesis HealthCare is a nationwide organization that cares for Veterans every day in more than 400 skilled nursing centers nationwide, providing short-stay rehabilitation, long-term, palliative or hospice care. “The time was right for us to launch a formal program to honor the dedication and service of our country’s Veterans,” shares Scott Soucy, Director of Managed Care Business Development for the Northeast Division. “We wanted to partner with an organization with a similar philosophy, and we believe that the We Honor Veterans program is a exceptional way to honor the military service of our elders.” Extendicare Extendicare is a leader in long-term care, operating 158 senior care facilities with approximately 15,400 beds in the United States 2 ADD SPECIAL MEANING TO YOUR GIFTS Show the ones you love that you really care. Each time you make a purchase from one of these vendors, they will donate $10 to the National Hospice Foundation. “Through our work with We Honor Veterans we strive to enhance the quality care and services that our teams provide to Veterans. Our centers work hard to offer quality and compassionate programs that specifically address the needs of our Veterans and we are proud to be a part of such an exemplary program,” said Paul Stavros, Director of Development for Extendicare. Genesis HealthCare and Extendicare join the ranks of community partners along with founding partner Dignity Memorial. As new community partners, both Genesis HealthCare and Extendicare will have access to the innovative WHV resources and training that will help the organization better serve Veterans throughout the country. As We Honor Veterans community partners, both organizations will focus on respectful inquiry, compassionate listening and grateful acknowledgment in serving the post-acute healthcare needs of Veterans. “It surprises many people to learn that there are over 21 million Veterans living in America today. These men and women often carry experiences from their military service that present unique healthcare challenges,” said J. Donald Schumacher, NHPCO President and CEO. To learn more about the We Honor Veterans program or to become a community partner, visit www.WeHonorVeterans.org. A newsletter of the National Hospice Foundation | Spring 2014 Or if gift cards are what you’re looking for, TisBest Charity Gift Cards allow the recipient to make a donation to one of 250 national charities, including NHF! www.nationalhospicefoundation.org/ TisBest Remember also to purchase your greeting cards through Cards for Causes, and 20% of your purchase will go to The National Hospice Foundation! www.cardsforcauses. com. They offer cards for every occasion! These programs will run through 2014 so include NHF for all holidays to add special meaning to your gift purchases. www.nationalhospicefoundation.org/Shop Running for a Cause NHF’s Run to Remember© Program raises over $100K in 2013 Run to Remember had a great year in 2013, raising over $123,000! 130 individuals ran a race of their choice or in one of NHF’s spotlight races. Though the race distances varied, from a 3k to an overnight relay race, what remained consistent were the reasons why they chose to be part of Run to Remember.© Each runner ran in memory or in honor of a loved one and in support of hospice care. The Watershed Group Tribute Tile and Commemorative Paperweight Honor, Remember, Invest: The Tribute Project Well Underway The Watershed Group Honors Mary J. Laybak Patrice Moore, President and Founder of The Watershed Group, is one of the most recent participants in The Tribute Project, honoring a friend and creating a legacy that will live on at the National Center for Care at the End of Life. Moore says, “I was compelled to support the NHF Tribute Project to honor my long-time friend and mentor Mary J. Laybak.” She continues, “For those like me who have dedicated our professional lives to hospice, Mary was my hospice touchstone and mentor.” Through the program, a runner or team has the option of designating 50% of their funds to a US or African hospice program. “In addition to the funds that supported community hospice programs and NHF, more than $47,000 went to support US & African hospice programs. We thank our 2013 Run to Remember© family, including our very own Executive Director, John Mastrojohn III, who ran in the 2013 Marine Corps Marathon in memory of his grandmothers and Galen Miller. Labyak, who died in February 2012, was known for her innovative work within the hospice and palliative care industry in the United States. “Ilearned more from her than I ever thought The NHF’s Tribute Project is an opportunity for donors to possible…” “From her unyielding dedication to the cause of the dying I learned we should always ask patients first ‘What do you want for the rest of your life?’ and give them that; and ‘what will be meaningful to you and your loved ones right now?’ then offer that.” Moore says. create a “tile” to be mounted at the National Center for Care at the End of Life which houses NHPCO and its affiliates. Additionally, this is another way for donors to support the Campaign for the National Center. Tiles may honor an organization, its founder, a retiring CEO, board member, volunteer or another member of the caregiving team; remember the legacy of a family member, colleague or friend; and invest in the comprehensive care that hospice provides. The Tribute Project was a perfect way to remember a person who gave so much to the hospice industry. “Mary’s hospice values and vision influenced my career,” Moore says. “I learned more from her than I ever thought possible and enjoyed a friendship that I cherish. Mary embodied the cause she helped to create.” To learn more about The Tribute Project, contact Heather Slack-Ratiu at (703) 837-3155 or [email protected]. A newsletter of the National Hospice Foundation | Spring 2014 John Mastrojohn, III 3 FHSSA is Going Global FHSSA will Expand Services Globally Under a New Name: Global Partners in Care Global Partners in Care is the reimagined, redesigned and re-inspired organization that was formerly known as FHSSA (Foundation for Hospices in Sub-Saharan Africa). FHSSA was initially created in 1999, after U.S. hospice leaders had a powerful experience during a professional seminar tour of hospices in Zimbabwe and South Africa. The tour highlighted the tremendous impact the burgeoning HIV/AIDS pandemic was having on African hospice leaders and their programs. Many areas had no hospices and the hospices that did exist were being severely challenged by the urgent need to adapt hospice care to the special needs of people living with HIV/AIDS. With minimal access to pain medication and very few hospice programs, healthcare systems and community members alike were overwhelmed. In 2014, the decision was made to build on the proven model of partnership that had been successful through FHSSA. Global Partners in Care, still fully committed to partnerships in Africa, will expand their reach based on the increasing need for hospice and palliative care services in other regions of the world. In fact, 80% of the global need for palliative care is in low and middle income countries. In addition, treatment of pain is woefully inadequate in low and middle income countries. These countries, which represent 83% of world’s population, utilized a mere 8% of total morphine consumption worldwide. The Partnership Program enables U.S. hospice and palliative care organizations to support hospice and palliative care organizations in developing countries. Partners engage in capacity-building, strategic planning, education, fundraising, and technical assistance to expand and improve services for those in need. developing countries are linked with national associations, government and private grant-making resources, and other U.S. organizations that share our mission to expand sustainable community health services and compassionate care internationally. To learn more, visit www.globalpartnersincare.org. “Compassion has no borders” “We are thrilled to expand the services and benefits that were offered through FHSSA to the rest of the global community,” says Executive Director of Global Partners in Care John Mastrojohn III, “We remain dedicated to supporting hospice and palliative care programs in Sub-Saharan Africa and in other areas of the world where there is need to provide compassionate end-of-life care but limited resources to do so.” Each partnership is unique, and is defined by the strengths of the participating entities. These opportunities create reciprocal exchanges that enable us to learn from each other, while supporting the care provided by our colleagues in developing countries. Hospices in 4 A newsletter of the National Hospice Foundation | Spring 2014 2014 NHF Gala Raises Funds to Support Global Partners in Care (Formally FHSSA) 2014 was a special year for the National Hospice Foundation Gala as everyone celebrated forty years of hospice care in the United States. This year, all NHPCO Management and Leadership Conference registrants were invited to join the celebration at the Gaylord National Resort and Convention Center, National Harbor, MD. The event raised funds through generous sponsors, silent and live auctions, and a special appeal to support Global Partners in Care (formerly known as FHSSA), where initiatives to support hospice and palliative care have expanded from Sub-Saharan Africa to other parts of the world. Samira Beckwith, Hope HealthCare Services, Patti Moore, The Watershed Group, Gretchen Brown and Deede Byrne, Hospice of the Bluegrass, Don Schumacher, NHPCO and Affiliates, and Jan Jones, The Elizabeth Hospice. “We are so happy to expand the reach of hospice and palliative care to parts of the world where resources are few. Using a model that has been so successful in helping millions of patients and their families in Africa, we know we can make a huge impact elsewhere,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. Several awards were presented: Gretchen Brown, CEO of Hospice of the Bluegrass, received the Galen Miller Leadership Award for her many years of visionary leadership in hospice palliative care and rural outreach. Will Schwalbe, best-selling author received the Morfogen Art of Caring Award for his profoundly moving memoir of caregiving, mourning, and love – The End of Your Life Book Club, based on the experience he shared with his mother during her treatment for cancer. Becky McDonald (posthumously), received the Global Vision Award for her dedication and innovation to program development in SubSaharan Africa through her work with FHSSA. Next year’s gala will be held on Friday, May 1, 2015, also at the Gaylord National Resort and Convention Center in conjunction with NHPCO’s 30th Management and Leadership Conference. THANK YOU TO THE LEAD SPONSORS THANK YOU LEAD SPONSORS!* *Sponsors as of March 10, 2014 TA N Z A N I T E S P O N S O R AMETHYST SPONSORS Community Health Accreditation Program (CHAP) HopeWest J. Donald Schumacher, PsyD VITAS Innovative Hospice Care NATIONAL HOSPICE FOUNDATION GALA Thank you to the Sponsors of the 2014 National Hospice Foundation Gala. The event was a great success as we celebrated 40 years of hospice care in the United States! For more information, please contact Joy Nguyen at [email protected]. GALA PARTNERS Forn ae wfull A s l esponsor t t e r o f listing, t h e N please a t i o n ago l Hto: o swww.nationalhospicefoundation.org/2014gala pice Foundation | Spring 2014 GARNET SPONSORS Center for Hospice Care Chapters Health System The Corridor Group and Jeannee & Mike Martin HBO Hospice of Michigan Hospice of Northwest Ohio Hospice Pharmacia National Association of Social Workers / NASW Foundation NHPCO Senior Leadership Team (Anita Brikman, Beth Fells, Cathy Gibney, Jon Keyserling, John Mastrojohn) Optum Palliative and Hospice Care Outcome Resources Prairie Haven Hospice & Palliative Care and Hospice Services Inc. Simione Healthcare Consultants 5 1731 King Street, Alexandria, Virginia 22314 Ph: 703-516-4928 or 877-470-6472 Fax: 703-837-1233 [email protected] Social Networking with NHF Join the conversation on Facebook! www.facebook.com/NatHospFdn Follow our tweets at Nhf_news Learn more about NHF at www.nationalhospicefoundation.org ! Here are just a few ways you can help hospice Give at Work Ask your human resources office if your organization matches charitable contributions or has another opportunity for you to donate with pre-tax donations. Run a Race-solo or with Friends Register at www.runtoremember.org to honor a loved one and raise funds for the National Hospice Foundation or Global Partners in Care. Choose Hospice as Your Charity Make a contribution to the National Hospice Foundation in lieu of flowers or gifts for any occasion. Include Hospice in Your Will Leave your legacy and create an effective plan for your future. Visit: www.nationalhosicefoundation.org/planning