Summary of Palliative Care with Kirk Hall

00:00:00 - 00:50:00

In the "Palliative Care with Kirk and Linda Hall" YouTube video, the speakers, Kirk and Linda, are introduced as advocates and developers of patient-centered palliative care for Parkinson's patients . They share their experiences and the importance of palliative care's team-based and holistic approach, which focuses on mental, emotional, and spiritual health. Kirk emphasizes the need for effective communication about the value of palliative care for patients and caregivers. The video discusses the establishment of centers of excellence for Parkinson's palliative care and the importance of addressing spiritual and psychosocial distress, advanced care planning, and the role of volunteers. Kirk encourages individuals to engage in palliative care and advanced care planning, emphasizing the benefits of planning for end-of-life care and educating healthcare professionals about palliative care. The video also mentions resources like the International Neurological Palliative Care Society website for more information.

• 00:00:00 In this section of the YouTube video titled "Palliative Care with Kirk and Linda Hall," the speakers, Kirk and Linda, are introduced. Kirk has been living with Parkinson's since 2008, and his wife, Linda, has been his care partner for over 50 years. They have two sons and five grandchildren. Kirk has been an advocate, author, and speaker on Parkinson's disease, and he and his wife have worked to develop patient-centered palliative care for Parkinson's patients. In 2014, they collaborated with Dr. Benzi Kruger to establish a palliative care clinic at the University of Colorado Hospital. Kirk and Linda have contributed to the development of PD palliative care at both the national and international levels. They share their experiences and the importance of palliative care for Parkinson's patients, focusing on its team-based and holistic approach. A study funded by PECORI in 2015-2016 revealed a clear preference for palliative care services from patients and care partners due to the team-based nature of care, interaction with care partners, and holistic focus on mental, emotional, and spiritual health.
• 00:05:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," the speaker, Kirk Hall, expresses his strong belief in the importance of palliative care for individuals with Parkinson's disease and their families. He recalls the Montreal World Parkinson Congress as a pivotal moment in the recognition of patient experiences and perspectives in the field of palliative care. Subsequently, the Patient-Centered Outcomes Research Institute funded a follow-up study, leading to the commitment of 33 Centers of Excellence in the United States to undergo training and implement palliative care. The rollout through these centers is scheduled to be completed by the end of 2023, and Hall emphasizes the need for effective communication to help patients and caregivers understand the value and importance of palliative care.
• 00:10:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," Kirk Hall discusses the importance of establishing centers of excellence for Parkinson's palliative care, with 33 medical facilities in the process of implementing this service. He clarifies the confusion surrounding the term "palliative care," explaining that it is about living as well as possible for as long as possible, focusing on increasing quality of life and minimizing suffering for patients, caregivers, and families. The care is interactive, holistic, and team-based, offering support for staying engaged with passions, providing relief for pain and other symptoms, addressing psychosocial and spiritual issues, and minimizing stress at diagnosis. The focus has expanded from mid-stage and advanced care planning to include the diagnosis experience, with training provided to help doctors respond to patients' needs.
• 00:15:00 In this section of the "Palliative Care with Kirk Hall" YouTube video, the importance of palliative care for neurodegenerative diseases is discussed, expanding the scope beyond cancer patients. Hospice and palliative care are distinguished, with hospice being a part of palliative care that occurs later in the process. The standard members of a palliative care team consist of a physician, nurse, social worker, and chaplain, with the inclusion of additional professionals like occupational therapists, physical therapists, speech therapists, and psychologists based on patient needs. Mentors for newly diagnosed patients are also suggested as valuable additions to the team. Advanced care planning is emphasized as a crucial part of palliative care, allowing individuals to make their wishes and preferences known to medical providers and family members in writing to minimize confusion. The best time for advanced care planning is encouraged to be considered carefully, as communication of these wishes to family members is essential to avoid chaos late in the process.
• 00:20:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," the speaker emphasizes the importance of engaging in advanced care planning for individuals with Parkinson's disease, despite their reluctance. He explains that as the disease progresses, issues with thought clarity and cognition can make it more difficult to have important conversations with loved ones about end-of-life wishes. Delaying this process can reduce the available time for these conversations and cause unnecessary stress. The speaker encourages individuals to consider the benefits of advanced care planning and even imagine their desired end-of-life scenario to motivate them to take action. He also clarifies the differences between chronic care and palliative care, explaining that while chronic care focuses on disease-related medical symptoms, palliative care prioritizes quality of life and overall well-being. Both types of care are necessary, as chronic care addresses medical symptoms and palliative care focuses on enhancing quality of life.
• 00:25:00 In this section of the "Palliative Care with Kirk Hall" YouTube video, the focus is on the importance of palliative care for patients and their families. Palliative care goes beyond just the patient and includes the caregiver and family. The approach is interdisciplinary and ongoing, addressing unmet needs such as caregiver issues, spirituality, and non-motor symptoms for people with Parkinson's disease. Only five percent of Parkinson's patients use hospice, and under-utilization of hospice and advanced care planning results in many people dying in hospitals instead of at home. The ideal situation, as depicted in the video, is one of closeness and caring with family and loved ones, resulting in a peaceful and regret-free conclusion.
• 00:30:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," Kirk Hall discusses the importance of planning for end-of-life care to avoid chaos and regrets. He emphasizes the benefits of discussing and planning for palliative care in advance, as represented in the on-screen image. Hall also mentions the International Neurological Palliative Care Society website (PCS.org) as a resource for more information. The founder of the organization, Dr. Kluger, is also present on the call and will answer questions. Sharon Burniston, a palliative care chaplain, shares her excitement about the topic and her previous work on spiritual distress in Parkinson's patients. She also mentions the need for interdisciplinary or transdisciplinary palliative care teams to address the spiritual, emotional, and psychosocial needs of patients.
• 00:35:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," the speaker, Kirk Hall, discusses the importance of identifying spiritual and psychosocial distress in palliative care, in addition to physical symptoms and disease trajectory. He emphasizes the significance of addressing Advanced Care Planning during the mid-stage of a disease when things are calmer, rather than during crisis situations. Hall also clarifies that adding a palliative care team to a patient's existing medical team does not replace other specialists but rather complements their care by focusing on quality-of-life issues and non-motor symptoms, which may not be addressed by other medical professionals.
• 00:40:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," the speaker addresses questions from viewers regarding initiating palliative care, involving motor movement disorder doctors, and determining the appropriate time for engaging a palliative care specialist. The speaker emphasizes that it's always the right time to engage palliative care, and encourages viewers to encourage their doctors to learn about it. He suggests that patients contact their nearest Center of Excellence for palliative care services and asks viewers not to be discouraged if their doctors are unfamiliar with palliative care, as they may need to be educated about its focus on quality of life.
• 00:45:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," the speaker discusses the importance of educating healthcare professionals about palliative care and how individuals can encourage them to learn more about it. A viewer asks how to share this information with a mental health director, Ginger Hobok, who cares for individuals with Parkinson's disease and their families. The speaker suggests contacting IPCS (International Palliative Care Services) for more information and resources. The conversation then shifts to the role of volunteers in palliative care, emphasizing their importance as part of the team. The speaker shares their personal experience of being mentored by a volunteer and now mentoring others. Lastly, a viewer asks for examples of the type of care provided in palliative care. The speaker explains that hospice is a specific type of palliative care and mentions the importance of conducting diagnosis sessions in a stress-free manner.
• 00:50:00 In this section of the YouTube video titled "Palliative Care with Kirk Hall," the speaker, Kirk Hall, discusses the importance of palliative care and advanced care planning in managing the quality of life and mental well-being of patients and care partners dealing with Parkinson's disease. He emphasizes that these aspects are separate but crucial to standard care. Hall also announces upcoming events, including scholarships for the World Parkinson's Conference, virtual sessions with experts, and a new survey on women in Parkinson's. He encourages listeners to participate in these opportunities and reminds them of regular chat groups and support sessions.