One Patient’s View of Coping with End of Life I was told by my cardiologist that I have end-stage heart failure. It was a devastating blow, and I admit I was very down and confused. I had six months to a year to live — maybe two years. Medical specialists offered several procedures that would increase my quality of life, but would not prolong it. I rejected the procedures because of anxiety in anticipating them, they would be invasive, they may not work in my case, and — most importantly — they would not extend my life. I started hospice care in July of this year. Being confronted with facing the end of life, I prepared some keywords to help me cope with the situation. I have posted them in my kitchen. Laughter – Keep your sense of humor, including the ability to laugh at yourself. The act of laughing helps your body fight end-of-life stress in a number of ways, and its benefits are well documented. Watch a funny movie, or remember a humorous event in your life. I like the old monologues by comedians Foster Brooks and Stephen Wright.
Stress reduction – If the evening news makes you anxious, turn the TV off. If you get upset over religion or politics, cross them off your conversation list. If a situation is stressful, ask yourself how important will it be in the long run. Will it matter in a month or a year? It is really worth getting upset over? If the answer is no, focus your time and energy elsewhere.
The Honor of Being a Family Hospice Nurse
2015 FALL NEWSLETTER
Family Hospice and Palliative Care Marks 35 Years of Service
Attitude – The remarkable thing about attitude is that we have a choice every day regarding the attitude we will embrace. It is how we react to the end of life that is important. I am working toward an attitude that everything I do is interesting, like making a game of maximizing the number of dishes I can fit into one dishwashing cycle. Trust your body, emotions and mind – The human body is a remarkable and adaptive system. To some degree, it will heal itself. So, let nature take its course.
Projects – Create projects where you are fully Exercise – Get involved in an exercise program, focused on the situation or task at hand. Time however modest. Exercise will make you feel better by flies. Make time for leisure activities that bring you improving your health, lifting your spirits, and boosting joy, whether it be playing the harmonica or putting your confidence. At a minimum, I walk around the first together a puzzle. My most recent projects were floor of my home several times a day and do simple setting up a model train layout and writing my balancing exercises. memoirs. Gratitude – Being thankful for what you have has been linked to sounder sleep, less anxiety and depression, higher satisfaction with life, and kinder behavior toward others. More than any other emotion, gratitude is the emotion of friendship. I am particularly grateful that there is little pain with my condition.
Family Hospice & Palliative Care 50 Moffett Street Pittsburgh, PA 15243
PRESORTED FIRST-CLASS MAIL U.S. POSTAGE PAID PITTSBURGH, PA Permit No. 02743
In our end-of-life journey, think of the positive things people have said to you in your past, and how you make a difference in the world. And never forget – YOU MATTER TO OTHERS! Jim Gatto September, 2015
Hardly a day goes by that I am not asked by someone how I can work as a hospice nurse. I view hospice care as a calling. It is a privilege to enter peoples’ lives at their most vulnerable time. I become part of a patient’s journey, advocating for the patient to receive relief from symptoms and to have a death with dignity, respect and pride. Respect is so important – respect for a patient’s culture, their background, their religious beliefs, and their short- and long-term goals. While patients and their families may feel that we are a gift to them, those of us who have chosen to provide hospice care know better. I realize every day the gifts I have received from getting to know my patients and their loved ones. I am honored to take this journey with them and can’t imagine my life without each and every patient I have met along the way. — Ann Yaros, RN, Family Hospice and Palliative Care
Simple Pleasures Add to Quality of Life There is nothing William “Uncle Bill” Anderson of Hermitage enjoyed more than spending time outdoors. At 97 years of age, he served nearly half a century as a school bus driver and worked on a local farm for many years. Bill hadn’t been outside since returning home after a hospitalization in July and being admitted as a patient of Family Hospice and Palliative Care. One of his last wishes was to go outside one more time to see his tractor and experience the outdoors. The Family Hospice Hermitage team of Jennifer Trone, clinical supervisor, Denise Armstrong, social worker, and RN case manager Anya Pupekuvich took action to make Bill’s wish become a reality. The layout of the Anderson home created significant navigational challenges for Bill, so the Family Hospice team contacted the Hermitage Fire Department for help. Chief John Flynn responded quickly and was eager to coordinate volunteers and secure a specialty chair to fulfill Bill’s wish.
On a recent blustery afternoon Family Hospice staff, along with Hermitage volunteer firefighters and Bill’s daughter, Sherry Iverson, gathered at the home for a special outing. Dressed in a winter coat to ward off the chill, Bill could not have been more pleased to get out into the fall air. “Bill grinned from ear to ear,” Jennifer shared. “I don’t even think he said anything. He was so excited and grateful to be outside! The firefighters displayed such genuine kindness and compassion. I think Bill sensed that too. He made a point to shake hands with each of them.” Honoring Bill’s wish to once again enjoy the fresh air outside his home is in keeping with hospice’s goal of supporting quality of life, which is not restricted to medical care alone. Being cared for at home enables Bill to enjoy a nightcap with his son David each evening. “Bill shared that his secret to longevity is a shot and a beer every night” Jennifer said. Married for 65 years to Hazel before becoming a widower, Bill also shared his key to a successful marriage. “We never went to bed mad.” The Family Hospice team extends special thanks to the Hermitage firefighters who responded swiftly and with great kindness in making Bill’s wish come true.
“H
ospice is people. It always has been, and it always will be,” says Family Hospice and Palliative Care volunteer Carol Sayers Vockel. Leave it to Carol, a volunteer and hospice advocate of 35 years and unofficial Family Hospice historian, to get to the heart of the matter. As the organization marks its 35th anniversary this year, it is important to recognize and remember that Family Hospice has its roots in the volunteer movement that gave birth to hospice in so many places across the country in the 1970s and 80s, even before Medicare provided funding for supportive services to patients and caregivers navigating serious illness. Truly home-grown, Family Hospice was founded by a group of individuals from South Hills Interfaith Ministries, the home care division of Jefferson Hospital, St. Clair Hospital and what was then Mercy Hospital. The coalition’s interest was to improve the options for their loved ones and for their community at end of life. Carol recalls “a little office by the elevator” at St. Clair Hospital that served as home to the organization’s humble beginnings. “The staff was small, the space was small, but I was greeted with such warmth,” says Carol when she responded in person to a newspaper ad requesting volunteers. As it turns out, Family Hospice would place many such ads in the ensuing years, largely because generous, open-hearted people like Carol continued to present themselves. Carol remembers her early years as a patient volunteer with fondness. She explains, “I had a great teacher in Sr. Alma,”
Continued inside left
Mission Statement The Mission of Family Hospice and Palliative Care is to provide compassionate, quality comfort care that enhances the lives of people with life-limiting illness and their families.
Board of Directors Robert E. Butter, Chair Deborah Brodine, Vice Chair Bruce Austin, Secretary Paul Winkler, Immediate Past Chair Kathi R. Boyle Kimberly Ward Burns
David Friedland, MD Barbara Ivanko, President and CEO Barry C. Lembersky, MD Lisa Turbeville Markowski Sandra Tomlinson G. Alan Yeasted, MD
Institutional Advancement Committee Lisa Turbeville Markowski, Chair Robert E. Butter Nanci Case Ruth G. Foltz
Nancy F. Gannon Marthé Groves Jane D. Johnson
FamilyHospicePA.org
Dear Friends, Recently I received a note from a patient under our care which included this quote this from Ralph Waldo Emerson: “…To appreciate beauty, to find the best in others; to leave the world a bit better, whether it be by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded.” I can’t think of a more apt sentiment as Family Hospice and Palliative Care marks 35 years of caring for the community. As the need for expert end-oflife care continues to grow, and we with it, it’s worth remembering what defines our community. Our community is ageless. Generations tread common ground, be it a grieving child or a 97-year-old man comforted by some sunshine and fresh air. Our community relies on the support of many – staff, volunteers, donors – all partners in caring for patients and families. Through our education and outreach efforts, Family Hospice continues to inform and engage others in learning about hospice and end-of-life issues. Our community’s geographic reach extends well beyond its’ early South Hills roots. Family Hospice today serves patients and families in nine counties in Western Pennsylvania and will soon expand to 23. Candlelight Companion volunteers sit vigil with Family Hospice patients on behalf of loved ones who may be spread across the country and unable to be present at their loved one’s bedside. Simply put, our community is defined by a shared belief – that quality, compassionate care at end of life is necessary to living fully and well. You receive this newsletter because you are part of our community. Whether you have invited us into your home, supported programs and services with your donated time and financial resources, or partnered with us in the care of patients and families, take pride, as I do, in 35 years as a community committed to the kind of success that Emerson celebrates. Gratefully,
Barbara Ivanko President & CEO This newsletter is published two times annually. Permission must be granted for reprinting of articles that appear here. Please direct questions, comments and/or requests to to Lynn Helbling Sirinek at 412-572-8874 or lhsirinek@familyhospicepa.org Go Green! If you would prefer to receive your copy of our newsletter via e-mail, sign up from the home page of our website or contact Lynn Helbling Sirinek as indicated above.
35Years of Service Continued from cover page
who was a nurse with Family Hospice for many years. Carol and Sr. Alma often collaborated in the care of patients. “She taught me to improvise. Being part of the hospice team really gives you confidence in that way,” Carol reflects. Improvisation took many forms over the course of 35 years. As the need for services and resources grew, so did the role of the volunteer. Carol laughs when she talks about selling cheesecakes from the back of a truck in the parking lot at the old Family Hospice offices as a fundraiser. Throughout the years, she has been called upon to decorate, stuff envelopes and tend to critically ill pediatric patients. Carol is not alone in her versatility. She marvels at the many talents volunteers continue to bring to bear in the care of patients and families, including music, reiki and pet therapy. “I believe that diverse people are drawn to hospice because dying is a universal experience. That’s what makes it so special,” says Carol. Family Hospice marks its 35th anniversary on November 12 at the South Hills Country Club, where we will honor Carol Sayers Vockel, our longest-serving volunteer. The “We Are Family” celebration features guests from the 1970s Pittsburgh Pirates family, including Steve Blass, Manny Sanguillen, Kent Tekulve and Greg Brown in a roundtable conversation. ROOT Sports’ Paul Alexander moderates. Contact Christine Jamison at 412-572-8812 for tickets.
Remember Family Hospice 171 on you United Way pledge
Medicare Proposes Reimbursement to Physicians for Advance Care Planning Conversations Pulitzer Prize-winning columnist Ellen Goodman founded The Conversation Project in 2012 as a grass roots campaign with the goal of having every person’s end-of-life wishes expressed and respected. She offered her perspective on what is lacking in healthcare in a recent interview with Healthcare.com: “We need to realize that Americans face the healthcare system with two conflicting fears: one is that they won’t get the care they need and the other is that they’ll get care they don’t want,” said Goodman. In 1983, the Medicare hospice benefit was established to provide reimbursement for specialized end-of-life care. It was an historic measure in increasing access to this expertise for those facing life-limiting illness. It seems Medicare is prepared to advance the cause of improving end-of-life care again. Earlier this year, The Centers for Medicare and Medicaid Services (CMS) proposed a plan to fund unlimited end-of-life care conversations for patients and their caregivers – not just physicians, but nurse practitioners and assistants as well. CMS is expected to release final rules for this new opportunity in November 2015, with launch scheduled for January 2016. Why does this matter? Family Hospice and Palliative Care President and CEO Barbara Ivanko explains, “Reimbursement for these important and complex
discussions supports their value to patients and families. A lack of reimbursement discourages them.” The proposed fee schedule would not just fund one conversation, but as many as necessary to help individuals and their health care providers progress through this sensitive discussion. Ivanko continues, “Recent studies show that people who participate in end-of-life planning are more likely to have their wishes followed, have family members who suffer less stress, have fewer hospitalizations and incur lower costs in the last six months of life than people who have not planned. Honoring patients’ treatment choices is a key predictor of high-quality end-of-life care. It spares the family the emotional burden of making decisions for which they are unprepared, the moral distress of not knowing whether they decided well and the divisiveness of arguing over who knows best what a loved one wants.” Making it easier for patients and their families to have end-of-life conversations is a significant measure in aligning patients’ values and wishes with the treatment they end up receiving. For the most current developments related to this Medicare proposal, visit our website, FamilyHospicePA.org or follow us on Facebook, Facebook.com/FamilyHospicePA and Twitter, @FamilyHospice.
The 28th Annual Family Hospice Golf Benefit raised more than $50,000 this summer. A special thank you to our Gold Sponsor, UPMC, and HoleIn-One Contest Sponsors Bobby Rahal Automotive Group and USA Compression. Proceeds support the provision of hospice care for those without private insurance, Medicare, or Medicaid, as well as bereavement services for grieving adults, children, and teens. Mark your calendars for next year’s event on May 23 where we’ll once again tee off at Valley Brook Country Club!
Beyond Our Doors Family Hospice and Palliative Care is committed to educating those we serve about hospice and end-of-life care, offering programs each year in hospitals and long-term care settings that inform our professional colleagues about access to hospice services and the more technical aspects of our work. In addition, we reach out to civic groups, faith communities, schools and universities to provide information about hospice, palliative care, grief, and the importance of discussing one’s end-of-life wishes with loved ones and medical professionals. Here are three offerings that Family Hospice would be pleased to present to your group of 25 or more people. Presentations are an hour and a half long, including time for questions and discussion. Hospice Myths and Facts Many people believe that hospice means imminent death. Does it really? What exactly is hospice care? When does someone need it, and how is it accessed and paid for? Hospice patients receive care wherever they happen to be — their own home, in a skilled or assisted living facility, in hospitals, or in an inpatient hospice center, such as the two operated by Family Hospice. How can hospice care help people experience not just a good death, but a good life to the very end? The TALK: The Greatest Gift You Can Give to Those You Love Regardless of age, a serious illness or a life-changing accident impacts your quality of life. Do those you love know your wishes should your health decline? Most do not know what their loved one would want should they become unable to make healthcare decisions for themselves. In order to alleviate the guilt and secondguessing that can haunt your loved ones, having that conversation in advance is important. Do you have an advance directive? A health care power of attorney? Join us as a Family Hospice physician and a social worker, along with an elder law attorney or a financial planner, discuss the advantages of planning ahead. The Choices We Make Many doctors struggle to talk honestly and openly with their patients nearing the end of life. Renowned surgeon Dr. Atul Gawande explored this topic in his bestselling book Being Mortal. Join us to view a 50-minute PBS Frontline video featuring Dr. Gawande’s personal journey and the stories of his patients and their families. The film explores the question “What are your priorities if your time is limited?” Being Mortal shines an unprecedented spotlight on how patients, families, and doctors all experience the stages of life. A Family Hospice physician and a social worker will facilitate a discussion at the conclusion of the video. If you are interested in scheduling one of these programs for your group, please contact Lynn Helbling Sirinek, Vice President, Philanthropy at (412) 572-8874
VOLUNTEER FAST FACTS Family Hospice has more than 325 volunteers who last year contributed more than 13,000 hours of time during Fiscal Year 2015. Last year, 1,500 of 3,364 Family Hospice patients had volunteers assigned to them. In total, volunteers made more than 3,600 visits to patients.
9%
This equates to 9% of the total direct patient care hours provided by our paid hospice staff, exceeding Medicare’s requirement that volunteer hours constitute 5% of total patient care hours.
Most volunteer assignments were to provide companionship to patients. Others provide bereavement support, pet therapy, reiki (healing touch), and music. Volunteers also serve as Candlelight Companions, sitting with patients during what is anticipated to be the final 48 hours of life. To learn more about volunteering with Family Hospice, contact Nick Petti, Manager of Volunteers, at 412-572-8806 or via email, npetti@ familyhospicepa.org.
Dear Friends, Recently I received a note from a patient under our care which included this quote this from Ralph Waldo Emerson: “…To appreciate beauty, to find the best in others; to leave the world a bit better, whether it be by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded.” I can’t think of a more apt sentiment as Family Hospice and Palliative Care marks 35 years of caring for the community. As the need for expert end-oflife care continues to grow, and we with it, it’s worth remembering what defines our community. Our community is ageless. Generations tread common ground, be it a grieving child or a 97-year-old man comforted by some sunshine and fresh air. Our community relies on the support of many – staff, volunteers, donors – all partners in caring for patients and families. Through our education and outreach efforts, Family Hospice continues to inform and engage others in learning about hospice and end-of-life issues. Our community’s geographic reach extends well beyond its’ early South Hills roots. Family Hospice today serves patients and families in nine counties in Western Pennsylvania and will soon expand to 23. Candlelight Companion volunteers sit vigil with Family Hospice patients on behalf of loved ones who may be spread across the country and unable to be present at their loved one’s bedside. Simply put, our community is defined by a shared belief – that quality, compassionate care at end of life is necessary to living fully and well. You receive this newsletter because you are part of our community. Whether you have invited us into your home, supported programs and services with your donated time and financial resources, or partnered with us in the care of patients and families, take pride, as I do, in 35 years as a community committed to the kind of success that Emerson celebrates. Gratefully,
Barbara Ivanko President & CEO This newsletter is published two times annually. Permission must be granted for reprinting of articles that appear here. Please direct questions, comments and/or requests to to Lynn Helbling Sirinek at 412-572-8874 or lhsirinek@familyhospicepa.org Go Green! If you would prefer to receive your copy of our newsletter via e-mail, sign up from the home page of our website or contact Lynn Helbling Sirinek as indicated above.
35Years of Service Continued from cover page
who was a nurse with Family Hospice for many years. Carol and Sr. Alma often collaborated in the care of patients. “She taught me to improvise. Being part of the hospice team really gives you confidence in that way,” Carol reflects. Improvisation took many forms over the course of 35 years. As the need for services and resources grew, so did the role of the volunteer. Carol laughs when she talks about selling cheesecakes from the back of a truck in the parking lot at the old Family Hospice offices as a fundraiser. Throughout the years, she has been called upon to decorate, stuff envelopes and tend to critically ill pediatric patients. Carol is not alone in her versatility. She marvels at the many talents volunteers continue to bring to bear in the care of patients and families, including music, reiki and pet therapy. “I believe that diverse people are drawn to hospice because dying is a universal experience. That’s what makes it so special,” says Carol. Family Hospice marks its 35th anniversary on November 12 at the South Hills Country Club, where we will honor Carol Sayers Vockel, our longest-serving volunteer. The “We Are Family” celebration features guests from the 1970s Pittsburgh Pirates family, including Steve Blass, Manny Sanguillen, Kent Tekulve and Greg Brown in a roundtable conversation. ROOT Sports’ Paul Alexander moderates. Contact Christine Jamison at 412-572-8812 for tickets.
Remember Family Hospice 171 on you United Way pledge
Medicare Proposes Reimbursement to Physicians for Advance Care Planning Conversations Pulitzer Prize-winning columnist Ellen Goodman founded The Conversation Project in 2012 as a grass roots campaign with the goal of having every person’s end-of-life wishes expressed and respected. She offered her perspective on what is lacking in healthcare in a recent interview with Healthcare.com: “We need to realize that Americans face the healthcare system with two conflicting fears: one is that they won’t get the care they need and the other is that they’ll get care they don’t want,” said Goodman. In 1983, the Medicare hospice benefit was established to provide reimbursement for specialized end-of-life care. It was an historic measure in increasing access to this expertise for those facing life-limiting illness. It seems Medicare is prepared to advance the cause of improving end-of-life care again. Earlier this year, The Centers for Medicare and Medicaid Services (CMS) proposed a plan to fund unlimited end-of-life care conversations for patients and their caregivers – not just physicians, but nurse practitioners and assistants as well. CMS is expected to release final rules for this new opportunity in November 2015, with launch scheduled for January 2016. Why does this matter? Family Hospice and Palliative Care President and CEO Barbara Ivanko explains, “Reimbursement for these important and complex
discussions supports their value to patients and families. A lack of reimbursement discourages them.” The proposed fee schedule would not just fund one conversation, but as many as necessary to help individuals and their health care providers progress through this sensitive discussion. Ivanko continues, “Recent studies show that people who participate in end-of-life planning are more likely to have their wishes followed, have family members who suffer less stress, have fewer hospitalizations and incur lower costs in the last six months of life than people who have not planned. Honoring patients’ treatment choices is a key predictor of high-quality end-of-life care. It spares the family the emotional burden of making decisions for which they are unprepared, the moral distress of not knowing whether they decided well and the divisiveness of arguing over who knows best what a loved one wants.” Making it easier for patients and their families to have end-of-life conversations is a significant measure in aligning patients’ values and wishes with the treatment they end up receiving. For the most current developments related to this Medicare proposal, visit our website, FamilyHospicePA.org or follow us on Facebook, Facebook.com/FamilyHospicePA and Twitter, @FamilyHospice.
The 28th Annual Family Hospice Golf Benefit raised more than $50,000 this summer. A special thank you to our Gold Sponsor, UPMC, and HoleIn-One Contest Sponsors Bobby Rahal Automotive Group and USA Compression. Proceeds support the provision of hospice care for those without private insurance, Medicare, or Medicaid, as well as bereavement services for grieving adults, children, and teens. Mark your calendars for next year’s event on May 23 where we’ll once again tee off at Valley Brook Country Club!
Beyond Our Doors Family Hospice and Palliative Care is committed to educating those we serve about hospice and end-of-life care, offering programs each year in hospitals and long-term care settings that inform our professional colleagues about access to hospice services and the more technical aspects of our work. In addition, we reach out to civic groups, faith communities, schools and universities to provide information about hospice, palliative care, grief, and the importance of discussing one’s end-of-life wishes with loved ones and medical professionals. Here are three offerings that Family Hospice would be pleased to present to your group of 25 or more people. Presentations are an hour and a half long, including time for questions and discussion. Hospice Myths and Facts Many people believe that hospice means imminent death. Does it really? What exactly is hospice care? When does someone need it, and how is it accessed and paid for? Hospice patients receive care wherever they happen to be — their own home, in a skilled or assisted living facility, in hospitals, or in an inpatient hospice center, such as the two operated by Family Hospice. How can hospice care help people experience not just a good death, but a good life to the very end? The TALK: The Greatest Gift You Can Give to Those You Love Regardless of age, a serious illness or a life-changing accident impacts your quality of life. Do those you love know your wishes should your health decline? Most do not know what their loved one would want should they become unable to make healthcare decisions for themselves. In order to alleviate the guilt and secondguessing that can haunt your loved ones, having that conversation in advance is important. Do you have an advance directive? A health care power of attorney? Join us as a Family Hospice physician and a social worker, along with an elder law attorney or a financial planner, discuss the advantages of planning ahead. The Choices We Make Many doctors struggle to talk honestly and openly with their patients nearing the end of life. Renowned surgeon Dr. Atul Gawande explored this topic in his bestselling book Being Mortal. Join us to view a 50-minute PBS Frontline video featuring Dr. Gawande’s personal journey and the stories of his patients and their families. The film explores the question “What are your priorities if your time is limited?” Being Mortal shines an unprecedented spotlight on how patients, families, and doctors all experience the stages of life. A Family Hospice physician and a social worker will facilitate a discussion at the conclusion of the video. If you are interested in scheduling one of these programs for your group, please contact Lynn Helbling Sirinek, Vice President, Philanthropy at (412) 572-8874
VOLUNTEER FAST FACTS Family Hospice has more than 325 volunteers who last year contributed more than 13,000 hours of time during Fiscal Year 2015. Last year, 1,500 of 3,364 Family Hospice patients had volunteers assigned to them. In total, volunteers made more than 3,600 visits to patients.
9%
This equates to 9% of the total direct patient care hours provided by our paid hospice staff, exceeding Medicare’s requirement that volunteer hours constitute 5% of total patient care hours.
Most volunteer assignments were to provide companionship to patients. Others provide bereavement support, pet therapy, reiki (healing touch), and music. Volunteers also serve as Candlelight Companions, sitting with patients during what is anticipated to be the final 48 hours of life. To learn more about volunteering with Family Hospice, contact Nick Petti, Manager of Volunteers, at 412-572-8806 or via email, npetti@ familyhospicepa.org.
Dear Friends, Recently I received a note from a patient under our care which included this quote this from Ralph Waldo Emerson: “…To appreciate beauty, to find the best in others; to leave the world a bit better, whether it be by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you have lived. This is to have succeeded.” I can’t think of a more apt sentiment as Family Hospice and Palliative Care marks 35 years of caring for the community. As the need for expert end-oflife care continues to grow, and we with it, it’s worth remembering what defines our community. Our community is ageless. Generations tread common ground, be it a grieving child or a 97-year-old man comforted by some sunshine and fresh air. Our community relies on the support of many – staff, volunteers, donors – all partners in caring for patients and families. Through our education and outreach efforts, Family Hospice continues to inform and engage others in learning about hospice and end-of-life issues. Our community’s geographic reach extends well beyond its’ early South Hills roots. Family Hospice today serves patients and families in nine counties in Western Pennsylvania and will soon expand to 23. Candlelight Companion volunteers sit vigil with Family Hospice patients on behalf of loved ones who may be spread across the country and unable to be present at their loved one’s bedside. Simply put, our community is defined by a shared belief – that quality, compassionate care at end of life is necessary to living fully and well. You receive this newsletter because you are part of our community. Whether you have invited us into your home, supported programs and services with your donated time and financial resources, or partnered with us in the care of patients and families, take pride, as I do, in 35 years as a community committed to the kind of success that Emerson celebrates. Gratefully,
Barbara Ivanko President & CEO This newsletter is published two times annually. Permission must be granted for reprinting of articles that appear here. Please direct questions, comments and/or requests to to Lynn Helbling Sirinek at 412-572-8874 or lhsirinek@familyhospicepa.org Go Green! If you would prefer to receive your copy of our newsletter via e-mail, sign up from the home page of our website or contact Lynn Helbling Sirinek as indicated above.
35Years of Service Continued from cover page
who was a nurse with Family Hospice for many years. Carol and Sr. Alma often collaborated in the care of patients. “She taught me to improvise. Being part of the hospice team really gives you confidence in that way,” Carol reflects. Improvisation took many forms over the course of 35 years. As the need for services and resources grew, so did the role of the volunteer. Carol laughs when she talks about selling cheesecakes from the back of a truck in the parking lot at the old Family Hospice offices as a fundraiser. Throughout the years, she has been called upon to decorate, stuff envelopes and tend to critically ill pediatric patients. Carol is not alone in her versatility. She marvels at the many talents volunteers continue to bring to bear in the care of patients and families, including music, reiki and pet therapy. “I believe that diverse people are drawn to hospice because dying is a universal experience. That’s what makes it so special,” says Carol. Family Hospice marks its 35th anniversary on November 12 at the South Hills Country Club, where we will honor Carol Sayers Vockel, our longest-serving volunteer. The “We Are Family” celebration features guests from the 1970s Pittsburgh Pirates family, including Steve Blass, Manny Sanguillen, Kent Tekulve and Greg Brown in a roundtable conversation. ROOT Sports’ Paul Alexander moderates. Contact Christine Jamison at 412-572-8812 for tickets.
Remember Family Hospice 171 on you United Way pledge
Medicare Proposes Reimbursement to Physicians for Advance Care Planning Conversations Pulitzer Prize-winning columnist Ellen Goodman founded The Conversation Project in 2012 as a grass roots campaign with the goal of having every person’s end-of-life wishes expressed and respected. She offered her perspective on what is lacking in healthcare in a recent interview with Healthcare.com: “We need to realize that Americans face the healthcare system with two conflicting fears: one is that they won’t get the care they need and the other is that they’ll get care they don’t want,” said Goodman. In 1983, the Medicare hospice benefit was established to provide reimbursement for specialized end-of-life care. It was an historic measure in increasing access to this expertise for those facing life-limiting illness. It seems Medicare is prepared to advance the cause of improving end-of-life care again. Earlier this year, The Centers for Medicare and Medicaid Services (CMS) proposed a plan to fund unlimited end-of-life care conversations for patients and their caregivers – not just physicians, but nurse practitioners and assistants as well. CMS is expected to release final rules for this new opportunity in November 2015, with launch scheduled for January 2016. Why does this matter? Family Hospice and Palliative Care President and CEO Barbara Ivanko explains, “Reimbursement for these important and complex
discussions supports their value to patients and families. A lack of reimbursement discourages them.” The proposed fee schedule would not just fund one conversation, but as many as necessary to help individuals and their health care providers progress through this sensitive discussion. Ivanko continues, “Recent studies show that people who participate in end-of-life planning are more likely to have their wishes followed, have family members who suffer less stress, have fewer hospitalizations and incur lower costs in the last six months of life than people who have not planned. Honoring patients’ treatment choices is a key predictor of high-quality end-of-life care. It spares the family the emotional burden of making decisions for which they are unprepared, the moral distress of not knowing whether they decided well and the divisiveness of arguing over who knows best what a loved one wants.” Making it easier for patients and their families to have end-of-life conversations is a significant measure in aligning patients’ values and wishes with the treatment they end up receiving. For the most current developments related to this Medicare proposal, visit our website, FamilyHospicePA.org or follow us on Facebook, Facebook.com/FamilyHospicePA and Twitter, @FamilyHospice.
The 28th Annual Family Hospice Golf Benefit raised more than $50,000 this summer. A special thank you to our Gold Sponsor, UPMC, and HoleIn-One Contest Sponsors Bobby Rahal Automotive Group and USA Compression. Proceeds support the provision of hospice care for those without private insurance, Medicare, or Medicaid, as well as bereavement services for grieving adults, children, and teens. Mark your calendars for next year’s event on May 23 where we’ll once again tee off at Valley Brook Country Club!
Beyond Our Doors Family Hospice and Palliative Care is committed to educating those we serve about hospice and end-of-life care, offering programs each year in hospitals and long-term care settings that inform our professional colleagues about access to hospice services and the more technical aspects of our work. In addition, we reach out to civic groups, faith communities, schools and universities to provide information about hospice, palliative care, grief, and the importance of discussing one’s end-of-life wishes with loved ones and medical professionals. Here are three offerings that Family Hospice would be pleased to present to your group of 25 or more people. Presentations are an hour and a half long, including time for questions and discussion. Hospice Myths and Facts Many people believe that hospice means imminent death. Does it really? What exactly is hospice care? When does someone need it, and how is it accessed and paid for? Hospice patients receive care wherever they happen to be — their own home, in a skilled or assisted living facility, in hospitals, or in an inpatient hospice center, such as the two operated by Family Hospice. How can hospice care help people experience not just a good death, but a good life to the very end? The TALK: The Greatest Gift You Can Give to Those You Love Regardless of age, a serious illness or a life-changing accident impacts your quality of life. Do those you love know your wishes should your health decline? Most do not know what their loved one would want should they become unable to make healthcare decisions for themselves. In order to alleviate the guilt and secondguessing that can haunt your loved ones, having that conversation in advance is important. Do you have an advance directive? A health care power of attorney? Join us as a Family Hospice physician and a social worker, along with an elder law attorney or a financial planner, discuss the advantages of planning ahead. The Choices We Make Many doctors struggle to talk honestly and openly with their patients nearing the end of life. Renowned surgeon Dr. Atul Gawande explored this topic in his bestselling book Being Mortal. Join us to view a 50-minute PBS Frontline video featuring Dr. Gawande’s personal journey and the stories of his patients and their families. The film explores the question “What are your priorities if your time is limited?” Being Mortal shines an unprecedented spotlight on how patients, families, and doctors all experience the stages of life. A Family Hospice physician and a social worker will facilitate a discussion at the conclusion of the video. If you are interested in scheduling one of these programs for your group, please contact Lynn Helbling Sirinek, Vice President, Philanthropy at (412) 572-8874
VOLUNTEER FAST FACTS Family Hospice has more than 325 volunteers who last year contributed more than 13,000 hours of time during Fiscal Year 2015. Last year, 1,500 of 3,364 Family Hospice patients had volunteers assigned to them. In total, volunteers made more than 3,600 visits to patients.
9%
This equates to 9% of the total direct patient care hours provided by our paid hospice staff, exceeding Medicare’s requirement that volunteer hours constitute 5% of total patient care hours.
Most volunteer assignments were to provide companionship to patients. Others provide bereavement support, pet therapy, reiki (healing touch), and music. Volunteers also serve as Candlelight Companions, sitting with patients during what is anticipated to be the final 48 hours of life. To learn more about volunteering with Family Hospice, contact Nick Petti, Manager of Volunteers, at 412-572-8806 or via email, npetti@ familyhospicepa.org.
One Patient’s View of Coping with End of Life I was told by my cardiologist that I have end-stage heart failure. It was a devastating blow, and I admit I was very down and confused. I had six months to a year to live — maybe two years. Medical specialists offered several procedures that would increase my quality of life, but would not prolong it. I rejected the procedures because of anxiety in anticipating them, they would be invasive, they may not work in my case, and — most importantly — they would not extend my life. I started hospice care in July of this year. Being confronted with facing the end of life, I prepared some keywords to help me cope with the situation. I have posted them in my kitchen. Laughter – Keep your sense of humor, including the ability to laugh at yourself. The act of laughing helps your body fight end-of-life stress in a number of ways, and its benefits are well documented. Watch a funny movie, or remember a humorous event in your life. I like the old monologues by comedians Foster Brooks and Stephen Wright.
Stress reduction – If the evening news makes you anxious, turn the TV off. If you get upset over religion or politics, cross them off your conversation list. If a situation is stressful, ask yourself how important will it be in the long run. Will it matter in a month or a year? It is really worth getting upset over? If the answer is no, focus your time and energy elsewhere.
The Honor of Being a Family Hospice Nurse
2015 FALL NEWSLETTER
Family Hospice and Palliative Care Marks 35 Years of Service
Attitude – The remarkable thing about attitude is that we have a choice every day regarding the attitude we will embrace. It is how we react to the end of life that is important. I am working toward an attitude that everything I do is interesting, like making a game of maximizing the number of dishes I can fit into one dishwashing cycle. Trust your body, emotions and mind – The human body is a remarkable and adaptive system. To some degree, it will heal itself. So, let nature take its course.
Projects – Create projects where you are fully Exercise – Get involved in an exercise program, focused on the situation or task at hand. Time however modest. Exercise will make you feel better by flies. Make time for leisure activities that bring you improving your health, lifting your spirits, and boosting joy, whether it be playing the harmonica or putting your confidence. At a minimum, I walk around the first together a puzzle. My most recent projects were floor of my home several times a day and do simple setting up a model train layout and writing my balancing exercises. memoirs. Gratitude – Being thankful for what you have has been linked to sounder sleep, less anxiety and depression, higher satisfaction with life, and kinder behavior toward others. More than any other emotion, gratitude is the emotion of friendship. I am particularly grateful that there is little pain with my condition.
Family Hospice & Palliative Care 50 Moffett Street Pittsburgh, PA 15243
PRESORTED FIRST-CLASS MAIL U.S. POSTAGE PAID PITTSBURGH, PA Permit No. 02743
In our end-of-life journey, think of the positive things people have said to you in your past, and how you make a difference in the world. And never forget – YOU MATTER TO OTHERS! Jim Gatto September, 2015
Hardly a day goes by that I am not asked by someone how I can work as a hospice nurse. I view hospice care as a calling. It is a privilege to enter peoples’ lives at their most vulnerable time. I become part of a patient’s journey, advocating for the patient to receive relief from symptoms and to have a death with dignity, respect and pride. Respect is so important – respect for a patient’s culture, their background, their religious beliefs, and their short- and long-term goals. While patients and their families may feel that we are a gift to them, those of us who have chosen to provide hospice care know better. I realize every day the gifts I have received from getting to know my patients and their loved ones. I am honored to take this journey with them and can’t imagine my life without each and every patient I have met along the way. — Ann Yaros, RN, Family Hospice and Palliative Care
Simple Pleasures Add to Quality of Life There is nothing William “Uncle Bill” Anderson of Hermitage enjoyed more than spending time outdoors. At 97 years of age, he served nearly half a century as a school bus driver and worked on a local farm for many years. Bill hadn’t been outside since returning home after a hospitalization in July and being admitted as a patient of Family Hospice and Palliative Care. One of his last wishes was to go outside one more time to see his tractor and experience the outdoors. The Family Hospice Hermitage team of Jennifer Trone, clinical supervisor, Denise Armstrong, social worker, and RN case manager Anya Pupekuvich took action to make Bill’s wish become a reality. The layout of the Anderson home created significant navigational challenges for Bill, so the Family Hospice team contacted the Hermitage Fire Department for help. Chief John Flynn responded quickly and was eager to coordinate volunteers and secure a specialty chair to fulfill Bill’s wish.
On a recent blustery afternoon Family Hospice staff, along with Hermitage volunteer firefighters and Bill’s daughter, Sherry Iverson, gathered at the home for a special outing. Dressed in a winter coat to ward off the chill, Bill could not have been more pleased to get out into the fall air. “Bill grinned from ear to ear,” Jennifer shared. “I don’t even think he said anything. He was so excited and grateful to be outside! The firefighters displayed such genuine kindness and compassion. I think Bill sensed that too. He made a point to shake hands with each of them.” Honoring Bill’s wish to once again enjoy the fresh air outside his home is in keeping with hospice’s goal of supporting quality of life, which is not restricted to medical care alone. Being cared for at home enables Bill to enjoy a nightcap with his son David each evening. “Bill shared that his secret to longevity is a shot and a beer every night” Jennifer said. Married for 65 years to Hazel before becoming a widower, Bill also shared his key to a successful marriage. “We never went to bed mad.” The Family Hospice team extends special thanks to the Hermitage firefighters who responded swiftly and with great kindness in making Bill’s wish come true.
“H
ospice is people. It always has been, and it always will be,” says Family Hospice and Palliative Care volunteer Carol Sayers Vockel. Leave it to Carol, a volunteer and hospice advocate of 35 years and unofficial Family Hospice historian, to get to the heart of the matter. As the organization marks its 35th anniversary this year, it is important to recognize and remember that Family Hospice has its roots in the volunteer movement that gave birth to hospice in so many places across the country in the 1970s and 80s, even before Medicare provided funding for supportive services to patients and caregivers navigating serious illness. Truly home-grown, Family Hospice was founded by a group of individuals from South Hills Interfaith Ministries, the home care division of Jefferson Hospital, St. Clair Hospital and what was then Mercy Hospital. The coalition’s interest was to improve the options for their loved ones and for their community at end of life. Carol recalls “a little office by the elevator” at St. Clair Hospital that served as home to the organization’s humble beginnings. “The staff was small, the space was small, but I was greeted with such warmth,” says Carol when she responded in person to a newspaper ad requesting volunteers. As it turns out, Family Hospice would place many such ads in the ensuing years, largely because generous, open-hearted people like Carol continued to present themselves. Carol remembers her early years as a patient volunteer with fondness. She explains, “I had a great teacher in Sr. Alma,”
Continued inside left
Mission Statement The Mission of Family Hospice and Palliative Care is to provide compassionate, quality comfort care that enhances the lives of people with life-limiting illness and their families.
Board of Directors Robert E. Butter, Chair Deborah Brodine, Vice Chair Bruce Austin, Secretary Paul Winkler, Immediate Past Chair Kathi R. Boyle Kimberly Ward Burns
David Friedland, MD Barbara Ivanko, President and CEO Barry C. Lembersky, MD Lisa Turbeville Markowski Sandra Tomlinson G. Alan Yeasted, MD
Institutional Advancement Committee Lisa Turbeville Markowski, Chair Robert E. Butter Nanci Case Ruth G. Foltz
Nancy F. Gannon Marthé Groves Jane D. Johnson
FamilyHospicePA.org
One Patient’s View of Coping with End of Life I was told by my cardiologist that I have end-stage heart failure. It was a devastating blow, and I admit I was very down and confused. I had six months to a year to live — maybe two years. Medical specialists offered several procedures that would increase my quality of life, but would not prolong it. I rejected the procedures because of anxiety in anticipating them, they would be invasive, they may not work in my case, and — most importantly — they would not extend my life. I started hospice care in July of this year. Being confronted with facing the end of life, I prepared some keywords to help me cope with the situation. I have posted them in my kitchen. Laughter – Keep your sense of humor, including the ability to laugh at yourself. The act of laughing helps your body fight end-of-life stress in a number of ways, and its benefits are well documented. Watch a funny movie, or remember a humorous event in your life. I like the old monologues by comedians Foster Brooks and Stephen Wright.
Stress reduction – If the evening news makes you anxious, turn the TV off. If you get upset over religion or politics, cross them off your conversation list. If a situation is stressful, ask yourself how important will it be in the long run. Will it matter in a month or a year? It is really worth getting upset over? If the answer is no, focus your time and energy elsewhere.
The Honor of Being a Family Hospice Nurse
2015 FALL NEWSLETTER
Family Hospice and Palliative Care Marks 35 Years of Service
Attitude – The remarkable thing about attitude is that we have a choice every day regarding the attitude we will embrace. It is how we react to the end of life that is important. I am working toward an attitude that everything I do is interesting, like making a game of maximizing the number of dishes I can fit into one dishwashing cycle. Trust your body, emotions and mind – The human body is a remarkable and adaptive system. To some degree, it will heal itself. So, let nature take its course.
Projects – Create projects where you are fully Exercise – Get involved in an exercise program, focused on the situation or task at hand. Time however modest. Exercise will make you feel better by flies. Make time for leisure activities that bring you improving your health, lifting your spirits, and boosting joy, whether it be playing the harmonica or putting your confidence. At a minimum, I walk around the first together a puzzle. My most recent projects were floor of my home several times a day and do simple setting up a model train layout and writing my balancing exercises. memoirs. Gratitude – Being thankful for what you have has been linked to sounder sleep, less anxiety and depression, higher satisfaction with life, and kinder behavior toward others. More than any other emotion, gratitude is the emotion of friendship. I am particularly grateful that there is little pain with my condition.
Family Hospice & Palliative Care 50 Moffett Street Pittsburgh, PA 15243
PRESORTED FIRST-CLASS MAIL U.S. POSTAGE PAID PITTSBURGH, PA Permit No. 02743
In our end-of-life journey, think of the positive things people have said to you in your past, and how you make a difference in the world. And never forget – YOU MATTER TO OTHERS! Jim Gatto September, 2015
Hardly a day goes by that I am not asked by someone how I can work as a hospice nurse. I view hospice care as a calling. It is a privilege to enter peoples’ lives at their most vulnerable time. I become part of a patient’s journey, advocating for the patient to receive relief from symptoms and to have a death with dignity, respect and pride. Respect is so important – respect for a patient’s culture, their background, their religious beliefs, and their short- and long-term goals. While patients and their families may feel that we are a gift to them, those of us who have chosen to provide hospice care know better. I realize every day the gifts I have received from getting to know my patients and their loved ones. I am honored to take this journey with them and can’t imagine my life without each and every patient I have met along the way. — Ann Yaros, RN, Family Hospice and Palliative Care
Simple Pleasures Add to Quality of Life There is nothing William “Uncle Bill” Anderson of Hermitage enjoyed more than spending time outdoors. At 97 years of age, he served nearly half a century as a school bus driver and worked on a local farm for many years. Bill hadn’t been outside since returning home after a hospitalization in July and being admitted as a patient of Family Hospice and Palliative Care. One of his last wishes was to go outside one more time to see his tractor and experience the outdoors. The Family Hospice Hermitage team of Jennifer Trone, clinical supervisor, Denise Armstrong, social worker, and RN case manager Anya Pupekuvich took action to make Bill’s wish become a reality. The layout of the Anderson home created significant navigational challenges for Bill, so the Family Hospice team contacted the Hermitage Fire Department for help. Chief John Flynn responded quickly and was eager to coordinate volunteers and secure a specialty chair to fulfill Bill’s wish.
On a recent blustery afternoon Family Hospice staff, along with Hermitage volunteer firefighters and Bill’s daughter, Sherry Iverson, gathered at the home for a special outing. Dressed in a winter coat to ward off the chill, Bill could not have been more pleased to get out into the fall air. “Bill grinned from ear to ear,” Jennifer shared. “I don’t even think he said anything. He was so excited and grateful to be outside! The firefighters displayed such genuine kindness and compassion. I think Bill sensed that too. He made a point to shake hands with each of them.” Honoring Bill’s wish to once again enjoy the fresh air outside his home is in keeping with hospice’s goal of supporting quality of life, which is not restricted to medical care alone. Being cared for at home enables Bill to enjoy a nightcap with his son David each evening. “Bill shared that his secret to longevity is a shot and a beer every night” Jennifer said. Married for 65 years to Hazel before becoming a widower, Bill also shared his key to a successful marriage. “We never went to bed mad.” The Family Hospice team extends special thanks to the Hermitage firefighters who responded swiftly and with great kindness in making Bill’s wish come true.
“H
ospice is people. It always has been, and it always will be,” says Family Hospice and Palliative Care volunteer Carol Sayers Vockel. Leave it to Carol, a volunteer and hospice advocate of 35 years and unofficial Family Hospice historian, to get to the heart of the matter. As the organization marks its 35th anniversary this year, it is important to recognize and remember that Family Hospice has its roots in the volunteer movement that gave birth to hospice in so many places across the country in the 1970s and 80s, even before Medicare provided funding for supportive services to patients and caregivers navigating serious illness. Truly home-grown, Family Hospice was founded by a group of individuals from South Hills Interfaith Ministries, the home care division of Jefferson Hospital, St. Clair Hospital and what was then Mercy Hospital. The coalition’s interest was to improve the options for their loved ones and for their community at end of life. Carol recalls “a little office by the elevator” at St. Clair Hospital that served as home to the organization’s humble beginnings. “The staff was small, the space was small, but I was greeted with such warmth,” says Carol when she responded in person to a newspaper ad requesting volunteers. As it turns out, Family Hospice would place many such ads in the ensuing years, largely because generous, open-hearted people like Carol continued to present themselves. Carol remembers her early years as a patient volunteer with fondness. She explains, “I had a great teacher in Sr. Alma,”
Continued inside left
Mission Statement The Mission of Family Hospice and Palliative Care is to provide compassionate, quality comfort care that enhances the lives of people with life-limiting illness and their families.
Board of Directors Robert E. Butter, Chair Deborah Brodine, Vice Chair Bruce Austin, Secretary Paul Winkler, Immediate Past Chair Kathi R. Boyle Kimberly Ward Burns
David Friedland, MD Barbara Ivanko, President and CEO Barry C. Lembersky, MD Lisa Turbeville Markowski Sandra Tomlinson G. Alan Yeasted, MD
Institutional Advancement Committee Lisa Turbeville Markowski, Chair Robert E. Butter Nanci Case Ruth G. Foltz
Nancy F. Gannon Marthé Groves Jane D. Johnson
FamilyHospicePA.org