In the first two editions of Hospice Horizons this year, we shared a glimpse into why and how Hospice & Community Care began. In this edition, you will learn how Hospice & Community Care’s specialized care for patients and families has grown and evolved over the last 40 years.
In 1980, Lancaster County had numerous social service organizations that focused on different community needs. When then Hospice of Lancaster County [now Hospice & Community Care] was formed, it became part of a community support system and focused on end-of-life care and supporting patients and families physically, spiritually and emotionally. Hospice of Lancaster County served as a liaison between local human service organizations and families needing support. As there were few resources at that time, this model was met with challenges as not all organizations were in tune with end-of-life needs. This became the catalyst for Hospice of Lancaster County to learn more about the recently enacted Hospice Medicare Benefit, which would require the organization to provide its own full range of end-of-life services to the community. Hospice of Lancaster County became Medicare-certified in 1985.
In addition to educating the community about the benefits of good end-of-life care, Hospice of Lancaster County worked with the medical community to bring awareness to the benefits of hospice care and the integral role it played in health care. “Hospice care was a very new concept in the United States, Pennsylvania and, certainly, in Lancaster County in the 1980s, and often met with skepticism,” shared Joanne Berkowitz, clinical support nurse at Hospice & Community Care since 1985. “Hospice of Lancaster County’s very small staff participated in outreach to the broader community – including educating physicians about the benefits of having hospice care at home. It was an amazing coming together of staff and volunteers to educate others regarding comfort care and diminish the fear of the word hospice.”
“Nursing care provided by registered nurses 40 years ago was very inclusive,” shared Joanne. “The RN had a patient caseload and provided all aspects of care – nursing care, personal care, IV care and often advocated as a social worker. On one occasion I had a physician call and ask me to ‘take the patient for a ride around the block’ and assess his driving skills. The patient wanted to keep his license and the physician was questioning his ability. He passed!”
“When Hospice & Community Care began, it relied on the support of community physicians to help serve patients and families,” commented Tracey Wheatley, Director of Home Hospice, Lancaster with Hospice & Community Care since 1985. During that time community physicians attended Hospice’s weekly team meetings, which were comprised of a part-time nurse, social worker, volunteer community chaplain and a volunteer bereavement counselor.
In the ‘80s there were fewer medical specialists and more family doctors. Hospice staff were responsible for calling physicians directly. “Physicians counted on us, as nurses, to give them our recommendations about their patients’ needs,” shared Tracey. “When we would make recommendations they usually responded with, ‘You know what to do and I will approve that.’ Even though they trusted us, it was a bit scary being a registered nurse and asked to tell the physician what we wanted.”
Hospice and palliative care have evolved since the early 1980s and today, the medical community seeks Hospice & Community Care’s expertise in end-life care as part of the continuum of care. “It’s wonderful to now have physicians available to us on staff,” shared Tracey. “Our on-staff physicians are able to speak directly to medical specialists and primary care physicians on behalf of their patients – helping to assure that the highest quality medical care is delivered to each and every Hospice patient.” The organization now has 11 physicians and 12 nurse practitioners on staff.
Today, Hospice & Community Care continues to take this team approach. Patients may been seen by a physician, nurse practitioner, RN, LPN, aide, social worker and chaplain. This holistic approach ensures that the patient and family is getting the best care possible when they need it most. It also helps to strengthen the relationship between Hospice team members and build trust among one another.
Advancements in Care
In the beginning, Hospice of Lancaster County’s primary patients were adults who were diagnosed with cancer. As the organization’s care and comfort measures continued to evolve, the organization began seeing patients of any age with any diagnosis – positioning itself to better meet the needs of the community. It also helped to strengthen the family’s role in patient care. Today, cancer patients make up just 34% of Hospice’s patient population. The organization now cares for patients with any serious illness including heart disease, dementia, and kidney failure, just to name a few.
“Conversations about end-of-life care were challenging to have when hospice programs first began,” commented Ann Marie Ackerman, Vice President, Patient Care at Hospice & Community Care since 2014. “People did not want to think about dying and did not fully understand the concept of hospice. They knew that dying was inevitable, but wanted nothing to do with it.” People are now more aware of end-of-life care and are taking the time to have those conversations with their families and their physicians.
When the concept of hospice started, it focused on caring for the patient at home. Throughout the years the organization saw an increase in the number of patients who were living in nursing and personal care homes, resulting in the organization seeking out partnerships with these facilities. Today, Hospice & Community Care continues to embrace these relationships and works with senior living facilities in Lancaster and York counties, and in surrounding counties, helping to provide support and complement the care that these organizations provide to their residents.
In 1996, Hospice of Lancaster County opened The Essa Flory Hospice Center on Good Drive, the first freestanding hospice inpatient center in Pennsylvania. The Inpatient Center enabled Hospice staff to manage patients’ pain or other difficult symptoms 24/7 until their symptoms were under control and they could return home safely and comfortably. The organization relocated its Inpatient Center in 2008 to Mount Joy, which is now known as the Bob Fryer & Family Inpatient Center.
These two locations of care, in addition to home hospice care, will continue to impact the future of the hospice industry. “Now that families are more open to end-of-life conversations, individuals are expressing their desire to spend their final moments where they call home – resulting in a decrease in the number of deaths that occur in hospitals,” shared Ann Marie.
Hospice & Community Care provided support for less medically complicated patients early in its founding. Today, medical technology has come a long way and people are living longer and as a result, the disease process is more complex.
“Forty years ago, each Hospice patient had a blue portable chart,” shared Joanne. “Each staff member carried their own patient caseload in those portable folders which included all of the patient’s information. It wasn’t uncommon for a patient to look up a nurse’s phone number and call them at home with questions instead of calling Hospice’s 24-hour number. There were no cell phones and nurses carried beepers or pagers, and had to call in to the main office as they arrived at each patient visit so their whereabouts were known at the office at all times.”
Technology has changed all of that. Patient documentation is now completed and retained electronically in secure, HIPPA-compliant patient medical records. High-tech tools, such as a bladder screener and pulse oximeters, are readily available, along with resources and techniques to reduce a patient’s pain and discomfort. Technology has further allowed the organization to conduct telehealth visits with patients and families.
Grief support has always been an important aspect of the organization’s holistic approach to caring for the patient and family. Over the last 40 years, grief support has evolved from caring for individuals who lost a loved one due to illness to now becoming more complex. Today, the staff of the Pathways Center for Grief & Loss, a program of Hospice & Community Care, are caring for children, teens and adults who have lost a loved one due to tragic circumstances including suicide, overdose, and homicide, as well as serious illness. Support is available to anyone in the community, not just those who received hospice care.
“When I began 26 years ago, Hospice of Lancaster County offered one grief support group through its bereavement program,” shared Patti Anewalt, Director of the Pathways Center for Grief & Loss. “The support group served anyone who had experienced the loss of a loved one, regardless of how the person had died. Over time, the Pathways Center inherited a grief support program specifically for children and families, which, at the time, had been offered by a local community group, which is now known as the Coping Kids & Teens program.”
The Center also piloted a Good Grief Club in the early ‘90s in the Solanco School District and School District of Lancaster. This seven-week support series is still available today as a ‘train the trainer’ program for school counselors and is available to all area school districts. Pathways counselors are also a resource to area school administrators and guidance counselors after sudden unexpected losses.
Under Patti’s leadership, the Pathways Center for Grief & Loss was established and has grown from one full-time counselor to 11 bereavement counselors and support staff. The Center offers up to 20 support groups each month that focus on loss of a spouse and companion, loss of a parent, loss of a child, and most recently, loss of a loved one due to the Coronavirus, just to name a few. These support groups provide an opportunity for attendees to feel safe and comfortable, sharing with others who have experienced similar losses. “The Pathways Center has become a nationally-known organization that is in the forefront of its industry, sought out by other grief professionals to better understand the most effective ways to support bereaved individuals,” shared Patti.
While the approach to grief support has evolved over the last 40 years, Patti has found that more people are open to the idea of seeking support, as the stigma associated with bereavement support has diminished. “The subject of grief has been heightened, especially during the pandemic, through the media,” shared Patti. “People understand grief better and are more aware that help is available.” In 2019, the Pathways Center served nearly 9,000 adults, teens and children.
Please watch for the fall edition of Hospice Horizons to learn how Hospice & Community Care’s programs and services are continuing to evolve and grow.
Meet Our Contributors
Ann Marie Ackerman is the Vice President, Patient Care at Hospice & Community Care. She oversees home hospice and inpatient hospice care, and quality and compliance. Ann Marie is a registered nurse and received a Bachelor of Science in Nursing from the University of Delaware and a Master’s in Business Administration from Widener University. She is certified in hospice and palliative nursing, and has more than 40 years of healthcare experience. Prior to joining Hospice & Community Care, Ann Marie served in leadership positions in hospice, home health and nursing homes.
Patti Anewalt, PhD, LPC, FT is Director of the Pathways Center for Grief & Loss with Hospice & Community Care. The focus of her clinical practice, writing and teaching is on issues related to end of life, grief, compassion fatigue and crisis response, presenting at the national, state and local level. Patti is a Fellow in Thanatology with the Association for Death Education and Counseling, and a member of the International Work Group on Death, Dying and Bereavement. At the Pathways Center for Grief & Loss Patti oversees a wide variety of bereavement services for adults, children and teens, serving close to 9,000 hospice and community bereaved each year. A disaster mental health specialist and instructor for the American Red Cross, she serves on several community crisis teams, providing trainings, debriefings and support when local tragedies occur.
Tracey Wheatley is a registered nurse also certified in hospice and palliative care for 30 years. She is the Director of Home Hospice, Lancaster at Hospice & Community Care with 35 years of hospice experience. Tracey manages the delivery of home hospice services overseeing the interdisciplinary teams’ direct care services. She has developed and presented a wide variety of educational programs at the national, state and local level. Tracey served two terms on the National Council of Hospice and Palliative Professionals (NCHPP) Nurse Steering Committee, and now serves as the Nurse Community Leader for Nurses for NHPCO (National Hospice and Palliative Care Organization). Tracey serves as the lead person for the organization’s We Honor Veterans program and serves as the co-chair for the Veteran and Community Partnership of South Central PA.
Joanne Berkowitz began her career with Hospice of Lancaster County in December of 1985 as a staff nurse. Throughout the last 35 years, she has served as a staff nurse, team leader, education and orientation nurse, admissions and intake nurse, and liaison. She currently serves as a clinical support nurse.