Notre Dame Health Care Center’s At Home division has launched a new palliative care program that will expand the company’s reach across central Massachusetts. Hospice News recently connected with Executive Director Susan Keefe of the At Home Division, who said that the move followed lessons learned from the implementation of a pediatric palliative care program.
That pediatric initiative was one factor that opened the organization’s eyes to the rising need for this kind of care.
Notre Dame Palliative Care is available to adults facing serious illness and builds upon the company’s existing service line. Based in Worcester, Mass., Notre Dame Health Care Center, Inc., provides adult and pediatric hospice and palliative care, along with assisted living, specialized memory care and long-term care and rehabilitation skilled nursing services. Through the new program, staff will provide palliative care to patients in their homes, skilled nursing and assisted living facilities.
The decision to grow out services with an adult palliative care program budded from rising demand for serious illness and end-of-life, along with the need to bridge divides of care access and provider collaboration in a fragmented health care system, according to Keefe.
How did your pediatric palliative care service inform your decision to pursue an adult program?
Seeing the benefits of providing palliative care services to the pediatric population significantly influenced our desire to expand and provide support to the adult population through Notre Dame Palliative Care. Implementing the pediatric palliative care program seven years ago gave us a tremendous amount of insight into what we needed to do to get a new program off the ground administratively, along with the services that would be of benefit to individuals living with a serious or terminal illness.
We were able to gain a lot of knowledge around what individuals living in our community do and do not know about advanced care planning, advanced directives, their medical conditions and services available to them. While we cannot change the trajectory of anyone’s disease process, we can empower people, and their families, through education and support to make informed decisions around their medical care.
What drew your focus to each of these patient populations? What are some challenges to navigate in providing services to each?
Prior to starting the Pediatric Palliative Care (Pedi PALS) Program seven years ago, Notre Dame Health Care Center had always focused on caring for the aging population. When the [Massachusetts] Department of Public Health approached us to see if we would be interested in providing pediatric palliative care services, our initial thought was that this demographic might not be an appropriate fit for our organization. While we had been providing hospice services to the adult population, we recognized that individuals needed a great deal of support prior to being eligible to receive these services.
When we stepped back and really evaluated the opportunity in front of us, we determined that serving this population truly was in line with the mission of Notre Dame and our commitment to utilize our resources with a particular concern for the elderly, the poor and the vulnerable. Children and their families living with life-limiting illness need to be supported [in] the best way possible, and we realized that our organization was perfectly aligned to do this. We have grown [into] currently serving 125 children and their families.
What were some of the lessons learned from providing palliative care services? What are important aspects that other providers should note in their program efforts/strategies?
We can clearly see the significant impact our pediatric care services have on children and their families, and [we] knew we could provide similar support to benefit the adult population. Being diagnosed with a serious or terminal illness is life-changing to individuals and their families. Our goal is to provide adequate support and education, allowing individuals to have the highest quality of life possible.
We have learned that it is imperative to provide support not only to the individuals living with an illness, but also to those they consider family. While a significant focus is placed on pain and symptom management, it is equally important to address their psycho-social and spiritual needs.
Another important lesson that we have learned is the necessity of collaboration among all health care providers involved in one’s care. Unfortunately, the health care system can become very fragmented, causing uncertainty and mixed messages, [and] unnecessarily increasing stress and anxiety. It is important for our palliative care teams to have a strong focus on ensuring fragmentation in care is not occurring.
Communication and collaboration between providers is key when caring for a seriously or terminally ill individual.
How does cost weigh in to launching a program like this? What is the anticipated return on such an investment?
We continuously strive to deliver a higher quality of service than required under regulation. While we must create and deliver programs and services in a fiscally responsible manner. “The bottom line” is not our primary driver in our decision to launch the palliative care program.
This is an important bridge to service for patients and their families at an enormously challenging time.
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