In October, more than seventy medical professionals gathered at the event center at Tioga Downs in Nichols, New York to listen to talks centered around Palliative Care. Participants represented a broad range of disciplines including registered nurses, physicians, social workers, CEOs, hospice care coordinators, home health aides, and more. Geographically, the group came from many areas within and beyond Care Compass Network’s (CCN) nine-county region. Some work at hospitals and health systems as well as hospice and palliative care organizations. Staff from senior living communities and primary care medical practices were also in attendance. Care Compass Network sponsored the event in partnership with CareFirstNY, Inc., the Guthrie Clinic, and the Finger Lakes Geriatric Education Center (FLGEC).
Dr. Thomas Caprio is the Director of FLGEC and serves as the Associate Professor of Medicine in Clinical Nursing and Public Health Sciences at the University of Rochester. He was the first of the two featured speakers, and began by pointing out that the population is growing older as senior members of the community are living longer. “We’ve made a lot of accomplishments in healthcare,” Caprio points out. He went on to explain that for many years healthcare professionals have been concerned with mortality and keeping people alive. Now that people aged 85 and older are the fastest growing segment of the population, clinicians are dealing with morbidity more than ever before.
Caprio shared a case study concerning an 82 year old man who entered the hospital due to an acute stroke. He had additional health issues including colon cancer, prostate cancer, renal failure, and cognitive confusion, and contracted C. difficile infection while hospitalized. The multiple health concerns resulted in weight loss of more than fifty pounds. The family inquired about a possible feeding tube and wanted to know when the patient could resume his chemotherapy treatment. Caprio descried this reaction as being in a state of “Therapeutic Momentum”. When the medical team talked more with the family, they later learned that they had actually hoped to care for their father in the comfort of his own home. Although this is an option they considered early on, the family had not been part of any conversations with the clinicians where these intentions might have been discussed.
“Palliative Care should be part of the entire trajectory of a terminal Prognosis from initial diagnosis to end stages of life,” Caprio stated as he referred to the image illustrating the potential for Palliative Care influence over time. “End of Life Care is a goal shifting movement”, he added. Caprio went on to stress that Palliative Care is not the same as Hospice Care. This is currently a common misconception amongst patients, their family members as well as clinicians. Palliative Care can be provided at any time during someone’s diagnosis. He explains that while all Hospice Care is Palliative, not all Palliative Care is Hospice.
The second speaker, Robin Stawasz a Licensed Master Social Worker who serves as the Director of Innovation and Advocacy at CareFirst, NY Inc. in Painted Post, shared a video depicting a model conversation for discussion Palliative Care. Stawasz emphasized the importance of Palliative Care and “breaking down the silence and putting the patient back in the center of care.” In the clip, Dr. Diane Meier of Mount Sinai Hospital in New York explains that “having conversations with persons and their families about very complex medical decisions in the context of a serious illness is a procedure and it requires training, practice, and supervision just as any other complex medical procedure requires.”
One of the techniques suggested implements the ASK – TELL – ASK model that is often used with Health Literacy. The clinician asks the patient or family member to share what they have heard about the patient’s status and care plan to date and what they understand to be true. They also ask how the individual would like to receive information going forward. This involves more listening then talking on the part of the medical team members. Then the clinician shares the information about the diagnosis or disease progression. Meier recommends that at this point the medical team members should be brief and to the point. This creates a moment for the patient or family member to process the information. Lastly, the clinician returns to the ‘ASK’ portion of the conversation and checks-in with the individual to be sure they understand what has just been discussed. A member of the medical team asks the patient to repeat back what was said to be sure they heard everything as it was intended to be received.
Stawasz shared with the group CareFirst’s pilot program that they are currently engaged in with Guthrie, creating partnerships between Palliative Care teams and primary care clinicians. Stawasz explains that “we must remember that the primary care team knows the patient best and the Palliative Care team is there to help round-out the medical team – not replace it.”
Ideally, the primary care clinician is in a good position to have the Palliative Care conversation with the patient due to their long-standing relationship. They have established trust and have a comprehensive knowledge base of the long-term health history as well as the patient’s personal interests. Because the conversation can be uncomfortable and challenging for many medical professionals, there are certain events that might help prompt a more natural segue to the discussion. A recent hospitalization or new diagnosis might be a good trigger for initiating a dialogue. When a care giver is able to take the time to give a patient and family members a choice in the care plan, the patient feels a sense of validation and confidence in knowing their provider is committed to being with them every step of the way. In fact, Stawasz shared that studies have shown in cases where Palliative Care has been part of the medical plan, treatments have been more effective, families’ spiritual, emotional, and physical symptom burdens have been lessened and overall patient satisfaction is higher.
Sustainability of this type of program is important as it relates to the DSRIP (Delivery System Reform Incentive Payment) program timeline. This has been one of the key initiatives for the Performing Provider Systems (PPSs) as it meets all objectives of the quadruple aim: enhancing patient experience, improving population health, reducing costs, and improving physician experience. Palliative Care has been successful in keeping patients out of hospitals, allowing them to maintain their desired quality of life in their own home or another comfortable and familiar setting.
The current pilot program spans Chemung, Schuyler, and Steuben counties and utilizes a new telemedicine technology called the TapCloud which allows the patient to check-in and report symptoms to their clinician remotely from their smart phone. A skills lab has been created for family members to help prepare for what to expect when caring for their loved one at home. As part of the pilot, medical team members communicate regularly to review cases, create appropriate care plan updates, and integrate all information into a shared patient electronic medical record (EMR).
Palliative Care is experiencing a grassroots movement in effort to increase awareness. Advocacy is focused on improving access and education to both the public and clinicians. It’s aimed at helping people understand what Palliative Care means and how it compares and differs from the generalized perception of hospice. The movement has also extended to professional instruction. Currently, all residency programs at the University of Rochester are receiving Palliative Care training. The presenters expressed that the ideal scenario would look like “Palliative Care is everywhere”, including hospitals, senior living communities, in-home care settings and in-office visits between patients and their primary care providers. This approach strives to ultimately help people reach personal care goals which can include: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, having a sense of control, spending meaningful time with family and friends, and relieving others of any burden.
Participants from the session came away with helpful information they can put into practice in their respective professions. “I think the information from both presentations was on the same page about listening for patient’s goals for their care,” shared Lisa King, LMSW from Guthrie Medical Group. “Hearing them talk about giving permission for choice was great and I’m so glad I was able to learn about the resources available such as the skills lab.”
Jaime Carlstedt is with Guthrie Hospice and traveled from Towanda, Pennsylvania for the session. She remarked that “the information was very well presented. I appreciated the ASK – TELL – ASK example for conversations with patients and family members. It was helpful to see the population projections which informs our awareness related to future hospice patients.”
Care Compass Network’s Palliative Care project team and West Regional Performaning Unit (RPU) plan to hold future sessions similar to this one for clinicians as well as members of the public. Visit the Palliative Care Project Page to learn more about the profess with this initiative.