The Hospice and Palliative Care Association of New York State (HPCANYS) is a not-for-profit HOSPICE & PALLIATIVE CARE. About the Association:

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1 HOSPICE & PALLIATIVE CARE About the Association: The Hospice and Palliative Care Association of New York State (HPCANYS) is a not-for-profit organization representing hospice and palliative care programs, allied organizations and individuals that are interested in the development and growth of quality, comprehensive endof-life services. Our mission is to promote the availability and accessibility of quality hospice and palliative care for all persons in New York State confronted with life-limiting illness. The Association provides a strong, active voice for patients and their families. We advocate for public policy-both state and federal, and legislative and regulatory - that promotes accessible, quality end-of-life care. Founded in 1978 as the New York State Hospice Association, HPCANYS changed its name to Hospice and Palliative Care Association in 2000 to better reflect its role in fostering accessible, quality end-of-life care. The Association is headquartered in Albany, New York and serves members statewide. Member services include advocacy, education, research, public engagement, communications, peer groups, and technical assistance. 2 Computer Drive West, Suite 105 Albany, NY Like us on Facebook Follow us on Twitter Prepared by: Hospice and Palliative Care Association of New York State Published by: The Legislative Gazette, PO Box 7329, Albany, NY 12224, Tel:

2 Page 2 Reinventing Holiday Traditions Talking About Advance Care Planning As the holiday season approaches, consider adding a new tradtion - a discussion about advance care planning. Advance care planning is the process of thinking about, talking about and planning for future health care including end of life care. Advance care planning gives everyone a chance to say what s important to them. It helps people understand what the future might hold and to say what treatment they would or would not want. It helps people, their families and their healthcare teams plan for the future. This makes it much easier for families to know what the person would want particularly if they can no longer speak for themselves. Advance care planning is not just about old age. At any age, a medical crisis could leave someone too ill to make his or her own healthcare decisions. Even if you are not sick now, making healthcare plans for the future is an important step toward making sure you get the medical care you would want, even when doctors and family members are making the decisions for you. The more thoroughly you communicate, the easier it will be for everyone to respect your wishes. This holiday season, families and friends across America will go to great expense in time and money to gather together geographically and gastronomically. To help turn these gatherings into opportunities to improve understanding of the role of advanced care planning, here are some tips for making holiday conversations about future health care needs easier. Start with a story of someone else s experience. An anecdote about what happened to someone else is a safe way to dip a toe into potentially tumultuous conversational waters. Illustrating what could go wrong (or right) in a critical healthcare situation can be a useful segue to talk about your own expectations. Express your gratitude. Thanksgiving is a holiday about giving thanks for the good things in life and celebrating friends, family and connection. Use this as a time to express your values, priorities, and what you feel comprises quality of life. Tell your loved ones what you value most about your physical, mental and/or spiritual well-being. Pick a quarterback. Just as your favorite team needs a quarterback to advance the ball, you will need to designate someone you trust to act as your health care agent or proxy. This would be the person best suited to speak for you in a medical crisis in the event that you are unable to speak for yourself. Although there may be many members on the team, it is important to have one person who calls the plays. The person you choose should be able to make decisions that are in keeping with your values, wishes and choices. Blame the lawyers. If your family is not quite comfortable with sharing feelings, this strategy might work well for you. In fact, most estate attorneys and family law advocates strongly encourage their clients to execute a health care proxy and living will. Make it a family affair. Many hospices make available health care proxy forms that are the size of a place card, designed to fit in one s wallet. Use these to designate holiday seating arrangements and have the whole table fill them out together. You can always (ex)change it. Don t worry that this is carved in stone; just as your hairstyle might change as you age, so might your preferences. Your first living will might state that you want all care focused on sustaining your life and at some point later in your life you might change your mind. Later on you might decide your priority is to try lifeextending treatment for a period of time and then transition to a focus on comfort care. And at some point, you may or may not choose strictly comfort care, like hospice, to allow for a natural death in the setting of your choice with friends and family around you. Therefore, as your preferences change, you may update your documents as you so choose- and make sure your health care proxy knows what you want. Give a gift. Although it may feel awkward to initiate such a discussion with your loved ones, think of it as a gift that you are giving, both to yourself and to your family. Without an advance directive, friends and family struggle with the moral burden of complicated medical decisionmaking in a time of crisis. By making your health care preferences known and documented, you are giving a gift to your loved ones the certainty that they are following your wishes. For more information on advance care planning, please visit org/links.asp SERVING NASSAU, SUFFOLK AND QUEENS COUNTIES SINCE HAVING SOMEPLACE TO TURN CAN MAKE ALL THE DIFFERENCE. If you just found out someone you love is terminally ill, this is the right time to call Hospice Care Network. It s a call that will make a difference in the quality of life for your entire family. CALL US ANY TIME (24 HOURS A DAY, 7 DAYS A WEEK) HOSPICE Phelps Hospice is honored to serve those who have served our country. We are committed to our partnership with the Veterans Association of the Hudson Valley to ensure that all Veterans have access to hospice services whenever they choose. Sleepy Hollow, NY With its focus on symptom management, psychosocial support, and assistance with decision making, palliative care offers the potential to improve quality of care and reduce use of medical services. Home Is Where the Health Care Is Arent Fox is one of the few US law firms that has a dedicated group of attorneys who have extensive experience in serving Home Health, Hospice, and Palliative Care providers. For more than 20 years, we have advised clients on transactions, regulation, and litigation in these specialized businesses. The Miracle Foundation Palliative Care Center is here to help you feel better, feel supported and have more control over your care. FOR PALLIATIVE CARE INFORMATION CALL: LA / NY / SF / DC / arentfox.com Connie A. Raffa Partner, NY connie. raffa@arentfox.com

3 Page 3 Commemorating Veterans Day In 1954, President Dwight D. Eisenhower signed a bill proclaiming November 11th as Veterans Day and called upon Americans everywhere to rededicate themselves to the cause of peace. He issued a Presidential Order directing the head of the Veterans Administration, now the Department of Veterans Affairs, to form a Veterans Day National Committee to organize and oversee the national observance of Veterans Day. Veterans Day is intended to thank living Veterans for their service, to acknowledge that their contributions to our national security are appreciated, and to underscore the fact that all those who served in whatever capacity have sacrificed and done their duty. More than one-quarter of all Americans who pass away this year will be veterans of our Nation s armed services. Nearly 1,600 veterans die every day, and in this year alone, more of them will die than did during all four years of the Second World War. These heroic Americans deserve recognition for their military service particularly at the end of life s journey. It s only fitting that November, a month that sees us honoring veterans is also set aside as National Hospice and Palliative Care Month. Our local and State level VA Hospice partnerships plan for and take part in joint activities that celebrate the contributions of our veterans and educate the larger community about important services provided by community hospice and palliative care agencies. What better time to honor and recognize our veterans? New York s hospices and veteran s hospitals are joining together to thank veterans for their service to our country. Across New York State, vets who are receiving hospice and palliative care will be presented with special pins and certificates of merit to pay special tribute for their military service. The Hospice & Palliative Care Association of NYS (HPCANYS), along with our New York State VA partners, is supporting an on-going program from the National Hospice and Palliative Care Organization and the Department of Veterans Affairs (VA). We Honor Veterans is a pioneering campaign to help improve the care Veterans receive from hospice and palliative care providers. The needs of veterans are far more complicated than most people realize. All wars are different and provide unique experiences and sometimes complications to the Veterans who served in them. Many of our nation s Veterans live with complicating factors such as homelessness, substance abuse, PTSD and more. Certain populations of Veterans are underserved or at high risk. By recognizing the unique needs of our nation s Veterans who are facing a life-limiting illness, hospice and palliative care providers will be able to accompany and guide America s Veterans and their families toward a more peaceful ending. The magnitude of the issues presented by aging veterans is underscored by the sheer weight of their numbers. And in cases where there might be some specific needs, related to the Veteran s military service, combat experience or other traumatic events, providers will find tools through We Honor Veterans to help support the veterans in their programs. Across the state, We Honor Veterans partners host community events in November, such as Recognition Breakfasts and pinning events where veterans are presented with Certificates of Honor and thanked for their contribution of service to our country. Recognizing our veterans in this way at a time when their lives are coming to an end in the care of family and friends and supported by the professionals from community hospices and the VA has been a powerful way to say thank you. HPCANYS, our hospice and palliative care members and our affiliated community partners take it as our mission to ensure that excellent care at the end of life is available for our nation s Veterans and their families, not just in November, but every month of the year. Proud affiliate partner of HPCANYS Saluting our Veterans 1130 Corporate Drive Auburn, NY hospiceofthefingerlakes.org Helping you make the most of precious time Providing compassionate care and comprehensive services to families regardless of ability to pay. We work in any setting at home, hospital, or nursing home and are there for our patients and their families 24 hours a day, seven days a week. (914) hospiceinwestchester.org hospiceinputnam.org 540 White Plains Road, Ste. 300 Tarrytown, NY Serving Steuben, Chemung, and Schuyler Counties Since 1981 CareFirst gives me the power to take control of my illness. This is my disease, this is my story.

4 Page 4 Hospices and Palliative Care Programs Partner with the Cancer Action Network The NYS Palliative Care Collaborative: Taking Action and Empowering People to Assure Access to Care On September 19, 2013, the New York State Department of Health hosted a statewide gathering to inform stakeholders how the State s Cancer Control Plan was being established and executed. At this meeting, it became apparent that in an audience of individuals knowledgeable about cancer there was a clear deficit of knowledge about palliative care even though goals for cancer care and treatment are congruent with those for palliative care. They are holistic, community focused and oriented towards a wellness perspective. Following the event, leaders from HPCANYS and NYS Cancer Action Network recognizing the need and the mutual desire to assure that palliative care is more readily acknowledged and available, came together to plan how to best promote palliative care. Questions raised by the audience revealed the need for a sophisticated response that addressed all levels of need. In response, the two organizations came together to found the New York State Palliative Care Collaborative. The Collaborative is an opportunity to share information, resources, partnerships and best practices. The fledgling group s issued invitation to interested parties to gather a broadly based collaborative. The group aim is to focus on building a grass roots base for action and prepare a toolkit showing how a community can develop a palliative care education and advocacy campaign. This movement will give voice to the existing need for Palliative Care among individuals, families and the healthcare provider community. So far, 14 organizations have joined the collaborative, Together we have agreed on a seven point platform: Identify and bring together otherwise separate communities of interest for whom access to Palliative Care is or would be a highly valued model of ca Support a grassroots movement that will give voice to the existing need for Palliative Care among individuals, families and the healthcare provider c Identify individuals with the potential to become community-based activists and leaders on behalf of Palliative Care. Influence legislation and policy for Palliative Care by developing a clear policy agenda promoted through the strength of a collective voice. Facilitate a clear understanding of Palliative Care s essential role from the point of diagnosis up to and including hospice care. Develop and implement public education strategies regarding the rights to palliative care as mandated in the NYS Palliative Care Information Act (P & Palliative Care Access Act (PCAA). Create a foundation for sustainable partnerships for ongoing Palliative Care Education. We have already begun our outreach campaign. The Palliative Care Collaborative hosted an informational webinar in October. The Collaborative will be formally launched at a press event at NYS Capitol Building on Monday, November 24, 2014 at 11:00 am. For more information, or to participate, please contact Kimberly Connell at or kconnell@hpcanys.org Thank you, HPCANYS, for being a tireless advocate for patients and families coping with serious or advanced illness. We are proud to work with you to address critical end-of-life concerns and reduce the burden on family caregivers. This dynamic partnership has also guided us in founding the MJHS Institute for Innovation in Palliative Care to address the emerging needs for specialistlevel community-based palliative care. As care shifts focus in response to demands for higher quality and lower cost, those with chronic or advanced illnesses must have access to specialist-level palliative care at home or in nursing homes. Together, we will continue to provide patient-directed care in the community and help bring hospice and palliative care services to all New Yorkers facing a life-changing illness. BARBARA HINEY Executive Vice President MJHS Hospice and Palliative Care ELI S. FELDMAN Chief Executive Officer MJHS ALEXANDER S. BALKO President MJHS HOSPICE

5 Page 5 re. ommunity. CIA) Opportunities for Advancing Community-Based Palliative Care After hearing the name the Hospice and Palliative Care Association, many people ask, what is palliative care? Palliative care is both a philosophy of care and an organized system of medical care provided by an interdisciplinary team, including Physicians, Nurses and Nurse Practitioners, Social Workers, Chaplains, Counselors and Alternative Therapists. Palliative care is focused on the relief of suffering and support for the best possible quality of life for patients facing serious life-threatening illness, and their families. Palliative care seeks to address not only physical pain, but also emotional, social and spiritual pain to achieve the best possible quality of life for patients and their families. The goal of palliative care is to relieve suffering and provide the best possible quality of life for people facing the pain, symptoms and stresses of serious illness. Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their illness or disease process. It is appropriate at any age and at any stage of an illness, and it can be provided along with treatments that are meant to cure. Many hospitals have established palliative care programs. In fact, the number of palliative care programs in hospitals has more than doubled in the last decade. However, there are a number of challenges that have stunted the growth of community-based palliative care services, including the current structure of reimbursement systems, a general lack of understanding about what palliative care is and its benefits among Managed Care Organizations (MCOs) as well as to the community. In order to foster working relationships and to facilitate a climate of trust, cooperation and open communication between community-based palliative care programs and MCOs, the hospice and palliative care association of New York State (HPCANYS) has obtained grant funding from the Altman Foundation to prepare both Hospice and palliative care providers and selected MCO partner organizations to engage in in a pilot project to build a replicable, interdisciplinary, community-based palliative care service model to be delivered through Managed Care Organizations (MCOs). The project will establish contractual relationships between the Palliative care providers and the MCOs as provider and payer for the delivery of community-based palliative care services to identified MCO members. The eligible individual will receive care in his or her own home. Why is this necessary? Unfortunately, the communication gap between the business of health care and clinical practice continues to grow as medicine becomes more specialized, pharmaceutical options Upstate New York Hospice Alliance, Inc. We are pleased to work with members of the New York State Legislature on issues that affect end of life care for the people of our communities. Our members and New York State counties served: CareFirst Chemung, Schuyler, Steuben Hospicare and Palliative Care Services Tompkins, Cortland Hospice and Palliative Care, Inc. Herkimer, Oneida, Madison Hospice of Central New York Onondaga, Madison & Oswego Hospice and Palliative Care of Chenango County Chenango Hospice of Jefferson County, Inc. Jefferson, St. Lawrence Hospice and Palliative Care of St. Lawrence Valley St. Lawrence Hospice of the Finger Lakes Cayuga, Onondaga Hospice of the North Country Clinton, Franklin Lewis County Hospice Lewis Livingston County Hospice Livingston Lourdes Hospice Broome, Chenango, Delaware, Tioga Mountain Valley Hospice Hamilton, Fulton, Montgomery Ontario-Yates Hospice Ontario, Yates Oswego County Hospice Oswego and surgical procedures multiply and government oversight grows. The growth of MCOs provides an excellent opportunity to showcase a healthcare system like Palliative Care that is concerned with providing a personalize plan of care incorporating what is important to the patient and the caregiver. Healthcare policy analysts have pointed to capitated MCOs as excellent proving grounds for palliative care programs because of their payment structure and emphasis on coordinated care and their organizational flexibility. Our challenge is now to bridge that communications gap and build a system that emphasizes patient needs and quality of life in a manner that is consistent with MCO business practice. HPCANYS began the process of relationship development and education several years ago; our Innovations Managed Care Taskforce has already developed training to help our hospice and palliative care members overcome language, organizational and culture differences between their own organizations and MCOs. We are now meeting with several MCOs to develop an effective community-based palliative care service model that can be customized to the needs of the patient and family within an MCO system. Our experience will inform an understanding of elements of quality palliative care in post-acute settings, how it differs from hospice care and what benefit it will be for both MCOs and their members. Ultimately, our goal is to provide for all New Yorkers afflicted with a chronic progressive illness, the quality of care they deserve, in the comfort of their own home. Good Shepherd Hospice Comfort. Care. Compassion. Hospice Provides Medical Oversight Nursing Care Social Work Services Home Health Aide Services Bereavement Services Pastoral Care Volunteer Services Children s Bereavement Services Symptom Management Short-term inpatient care for symptom and pain management Gabriel s Courage Perinatal Support Program Delivery of medical supplies, equipment, lab services, and prescription drugs Providing Care in Suffolk and Nassau Counties or

6 Page 6 Palliative Care & A Win-Win Partnership As more and more elders and their families insist on aging, and even dying, in place, assisted living facilities (ALF) and hospice providers are finding ways to partner to the benefit of all parties involved. Increasingly, dying ALF residents are referred to hospice in order to facilitate a highquality dying experience. An Excellent Support System Hospice care is an excellent support system for the residents and their families, says Dia DePaula, RN, director of Health and Wellness with Clare Bridge, an adult home in Williamsville, NY. They add additional nursing services and the nurse is on call 24/7, so if the staff here has issues or concerns, they can call them and get an answer promptly. This often helps the resident avoid having to have additional lab work or hospitalization. DePaula has been at Clare Bridge for ten years and has much experience in working with the Hospice Buffalo team assigned to her facility. Our Hospice nurse and social worker provide a lot of support to the staff, especially when they are going through a hard time with some of the residents during the dying process, says DePaula. The staff might be uncomfortable or they feel like they can t handle the situation alone so the Hospice nurse will give a lot of on the spot teaching, explaining the medications and some of the side effects they might see or some of the symptoms that might warrant a call to Hospice. They ll explain that to the staff. It s been very beneficial to our residents. Communication is Key Cartwright et al., noted in their 2009 study, Hospice in Assisted Living: Promoting Good Quality Care at End of Life, that respectful collaboration, clear communication and shared expectations were imperative for a successful partnership. To that end, when Hospice Buffalo (Erie County, NY) and Niagara Hospice (Niagara County, NY) needed to learn more about the assisted living environment and how it could better facilitate ALF residents care, they sought out Norine Nickason, program director of the NYS Department of Health Western Region. The number one key she confirmed was that communication between the ALF and hospice had to be paramount, notes Melanie Marien, RPA, M.S., director of Clinical Relations and Business Development at The Center for Hospice and Palliative Care, Hospice Buffalo s parent company. For the facility and the hospice to have a successful partnership, they must develop shared policies before a critical need arises with a resident. When Hospice Buffalo staff meets with ALF administrators and nurses, we emphasize that Hospice Buffalo views the facility as the resident s home and our focus is, How can we safely maintain them in their home? Nickason also advised that the hospice must have a documented plan of care, which is clearly communicated with the facility. In addition, the level of support and plan of care must consider the safety and evacuation plan for the resident, notes Marien. Residents can stay in the facility as long as all their care needs are being met - there is no limitation for end-of-life length of stay in an ALF. Assisted Living A Lot of Benefits in the Partnership DePaula states that the one on one teaching and close collaboration with the Hospice Buffalo staff not only benefits her ALF staff, but also the resident and family. If a resident needs one on one attention, the Hospice nurse will usually place an aide and the resident benefits immensely from that extra one on one attention. We have residents that would not come out of their room or participate in activities without the encouragement of the Hospice aide. The resident s day is much more full of activities they are not as resistant and in that sense, they (Hospice) change the resident s lifestyle here by giving them more opportunity to participate in activities. It helps with the resident s overall care because their personal needs are addressed better because they feel more comfortable with the aide. Another adult home, Glenwell, a DePaul Senior Living Community in Cheektowaga, NY, also sees the benefits of partnering with Hospice Buffalo in their facility. Administrator Allison Rath Garvey, M.S., had a close family member receive care in the Hospice program and personally knows of the numerous benefits of hospice care. We are grateful that Hospice Buffalo is our local partner in providing in-home medical support, pain and symptom management, as well as help living with serious illness, noted Garvey in a letter. She has been so impressed with the benefits of the Hospice Buffalo/ALF that she plans to hold two informational sessions in November, designated as National Hospice & Palliative Care Month, to allow residents and families the opportunity to learn about hospice care and ask questions of hospice staff. Surprising Response One of the many benefits of having hospice care in a facility is the multidisciplinary staff that hospice utilizes to enhance a resident s and family s well being. You can tell once Hospice Buffalo comes in, they involve the family, they involve our staff and the resident gets better care and more attention. I think that s what I ve seen, said DePaula. Even if the Hospice aide is here for an hour a day, it s an hour that the resident is occupied with somebody and they are happy. It turns the day around. In addition, Hospice Buffalo has medication delivery and emergency delivery. If for some reason, our pharmacy is closed, I can contact Hospice Buffalo and they ll get it here within hours. DePaula has witnessed the improved outcomes that occur when Hospice is involved. We had one resident that would just sit and stare at the dining room table every day, she recalled. When Hospice Buffalo s music therapist came in and played her guitar, the resident would just light up. The resident would dance and sing with the therapist, and would even let us walk them down the hall to their room so that we could take care of them. Before the music therapy, we couldn t walk the resident to their room without the resident being anxious, scared or combative. One day the resident s daughter came and saw her mom dancing and just cried. She hadn t seen her mom that happy in a long time. They love the music therapist. Having the Hospice Conversation Talking about hospice care with a resident or their family can be challenging. However DePaula has adopted a straightforward approach. You have to be very careful how you bring up hospice to a family. You don t want to scare a family member into thinking this is it. So when we talk about it, we tell them hospice is different in an assisted living than in a hospital it is an adjunct to the care they are already receiving. I go over the qualifications they need to be accepted into hospice. I let them know that residents experiencing multiple hospitalizations, congestive heart failure, advanced lung disease or any serious, progressive illness could be eligible for hospice care, but that hospice is available for individuals whose prognosis can be measured in months rather than years of life. I let them know that it s a good idea when things start to change to have a system in place so that they have a team here to help them. I also inform them that hospice is a fully covered Medicare and Medicaid benefit and that most insurance plans cover hospice services. It alleviates a lot of their fear because if a resident is progressing in dementia, it s a lot to put them through to move them. The families welcome the Hospice Buffalo team for that reason. It relieves their anxiety because they re usually stressed about decision making. It helps to have a professional come in from the outside and confirm what the family member has already been thinking. Hospice Buffalo was recently awarded the national Hospice Honors designation for providing the best patient and caregiver experience. The prestigious annual review, established by Deyta, recognizes the top hospice agencies that continuously provide the highest level of satisfaction as measured from the caregiver s point of view. For more information about hospice care, call the Hospice & Palliative Care Association of NYS at or visit their website at hpcanys.org.

7 Institute of Medicine Issues Landmark Report Page 7 In September, the Institute of Medicine, a charter of the National Academy of Sciences, published the Report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The 507-page document was released on September 17, 2014, and contains recommendations developed over the past two years by a 21-member national committee. The committee included representatives from various fields involved in endof-life care: doctors, nurses, religious leaders, geriatric specialists, insurers and attorneys. In the report, the committee of experts finds that improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system. In other words, our current system isn t really doing such a great job of caring for patients and families who are diagnosed with a life-limiting illness but the opportunities exist to do a better job, and by taking advantage of these opportunities, we may be able to transform the entire health care system for the better. Why is this report so timely? The panel cites a number of factors which provide an imperative to conduct a close examination of end-of-life care in the United States. These conditions include the burgeoning population of older Americans who are dealing with multiple debilities including physical and cognitive disabilities, chronic illness, and functional limitations. Additionally, our population is quickly becoming more culturally diverse, heightening the need for care that is sensitive and appropriate for each individual patient. And our health care system isn t set up to do that for everyone. The report examines how the nation s health care system is increasingly burdened by factors that hamper delivery of high-quality care near the end of life. These include barriers in access to care that disadvantage certain groups; a mismatch between the services that patients and families need and the services they can obtain; inadequate numbers of palliative care specialists and too little palliative care knowledge among other clinicians; and a fragmented care delivery system spurred by financial incentives which contribute to both a lack of service coordination and spiraling costs. Recognizing these systemic shortfalls, the report finds that there are still new and encouraging opportunities for improvement. The report offers recommendations for improving end-of-life care in five key fields, including: person-centered, family-oriented, end-of-life care; clinician-patient communication and advance care planning; professional education and development; policies and payment systems to support high quality end-of-life care; and public education and engagement. Person Centered Care Ideally, health care should harmonize with social, psychological, and spiritual support to achieve the highest possible quality of life for all people. The report proposes 12 core components of quality end-of-life care, including frequent evaluation of the patient s physical, emotional, social, and spiritual well-being; management of pain and emotional distress; referral to hospice or palliative care according to patient needs and desires; and frequent updates to the care plan and access to services, in response to the changing needs of the patient and family. The panel recognizes hospice as an important approach to addressing the palliative care needs of patients with limited life expectancy and their families. For people with a terminal illness or at high risk of dying in the near future, hospice is a comprehensive, socially supportive, pain-reducing, and comforting alternative to technologically elaborate, medically centered interventions, the committee advises. Communication The panel maintains that the structure of today s health care system results in time pressures that interfere with communication and care coordination. However, there is growing knowledge within medical and social care communities about how to better engage patients and families in advance care planning and shared decision making. According to the IOM committee, the advance care planning process can begin at any age or state of health and should center on frequent conversations with family members and care providers. Furthermore, they advocate for the development of quality standards for clinician patient communication and advance care planning. These standards should be flexible, in order Continue on page 8 Our nurse was sensitive, subtle, sophisticated and tremendously well-informed. Like every VNSNY Hospice nurse we met, she was deeply compassionate. She answered all our questions and foresaw several we hadn t thought to ask. EXCLUSIVE HOSPICE OF NEW YORK Mobile App is Here! VNSNY: The Right Care Now Hospice admission criteria available at your fingertips. When to introduce your patient to hospice. Who qualifies for Hospice? Understand the four levels of hospice care. Hospice clinical formulary. Help in having difficult end-of-life discussions with patients and their loved ones. Current lists of hospice in-patient facilities and contracted Skilled Nursing Facilities. Frequently Asked Questions. Securely refer patients for assessment and admission! Proudly Supports Hospice and Palliative Care THE HOSPICE AND PALLIATIVE CARE ASSOCIATION OF NEW YORK STATE and we salute The New York State Senate & Assembly for support of Hospice Care for the thousands of New Yorkers whose quality of life is better, thanks to Hospice. Hospice of New York Court Square Suite 500 Long Island City New York Metro New York: Nassau County: Fax: info@hospiceny.com For more information, call or visit click on hospice

8 Page 8 Institute of MedicineContinue from page 7 to respond to changing needs of the population and to reflect new developments in technology and research. Payers and healthcare delivery organizations need to adopt, support, and integrate these standards into care plans and quality care assessments, the report states. the services patients receive with their care goals and preferences. The report calls for legislation, payment reform and public reporting of quality measures. It also recommends that emerging health information technology can provide an opportunity to assist in achieving these goals. Professional Education Palliative care education has improved substantially during the last decade, the authors note, although serious problems remain. Although hospice and palliative medicine is now a distinct medical specialty, education of clinicians engaged in providing daily care to dying patients needs improvement. Palliative care remains absent from many medical and nursing schools curricula, and the number of hospice and palliative care specialists remains inadequate. The committee recommends that educational institutions, professional societies, accrediting organizations, certifying bodies, health care delivery organizations, and medical centers take measures to both increase the number of palliative care specialists and expand the knowledge base for all clinicians. Re-tooling Policies and Payment Systems Although improving the quality of end-of-life care remains an end in and of itself, it could also reduce wasted healthcare dollars by preventing costly acute care and emergency services. Current financial incentives encourage a reliance on acute care settings that often are poorly suited to the needs, goals, and preferences of patients and their families. Many patients and families often do not want such care, the authors note, and it often provides little benefit. How healthcare dollars are spent needs major reform, according to the committee, with resources directed toward payment systems which incentivize the integration of medical and social services, the coordination of care across multiple care settings, and the use of advance care planning and shared decision making to better align Public Education and Engagement Finally, the IOM committee identifies a strategy for public education and engagement about end-of-life care planning on three levels. First, a societal engagement, whereby Americans as a whole must build support for public and institutional policies that ensure high-quality, sustainable care. Next, at the community and family level, we must raise awareness and elevate expectations about care options, the needs of caregivers, and the hallmarks of high-quality care. Lastly, we need to engage with individuals to facilitate advance care planning and promote meaningful conversations with family members and caregivers. The IOM committee believes that a person-centered, family-oriented approach which honors individual preferences and promotes quality of life through the end of life should be a national priority. The Hospice and Palliative Care Association of New York State has always and will continue to work toward that goal. Hospice provides hope, comfort and dignity. It s about how you LIVE! Thank you for your support Years of Providing Caring and Compassionate End of Life Care to the Westchester Community (315) Quality, Compassionate End-of-Life Care Hospice & Palliative Care of Westchester 311 North Street, Suite 204 White Plains, NY & Palliative Care Oneida, Herkimer and Eastern Madison Counties Hospice & Palliative Care QUESTIONS? COMMENTS? CONCERNS? We re on facebook and we re listening. facebook.com/thecommunityhospice We re on facebook and we re listening. More likes than any other Hospice program in the world. Phelps Hospice The love of family the support of friends, the comfort of being home... and our commitment to compassionate, dignified, and professional care. Phelps Hospice A Program of Phelps Memorial Hospital Center Sleepy Hollow, NY (914) Serving Westchester Families Since 1983