Dignity is an important component of providing care for dying patients and their families. Death with dignity is an
end-of-life option, governed by state legislation in the United States, and other lawmakers around the world. It
allows certain people with terminal illness to voluntarily and legally request and receive a prescription medication
from their physician to hasten their death in a peaceful, humane, and dignified manner. In today's show we talk
about what you need to know about your freedom of choice when it comes to dignity in dying. It's an important
conversation that could impact the discussions you have about life and death with your family and healthcare
team.
COVID-19 in its early days was classified as only a respiratory illness with varying degrees of severity. But as healthcare professionals learned more over time, they started also considering it a vascular disease because of blood clots that led to serious complications, including death, in patients suffering from COVID-19. In today's show hosts, Dr. John Phillips and Kym McNicholas are joined by guest co-host Nurse Practitioner Kay Smith and Cardiothoracic Surgeon Dr. David Allie, and a patient who almost lost his legs following vascular complications due to COVID-19, to talk about those vascular complications and strategies to minimize arterial/venous thromboembolism (blood clots), myocardial infarction (damage to the heart muscle caused by lack of blood supply, which could be the result of a blood clot) complications. Some of those strategies discussed include earlier bloodwork to check cardiovascular biomarkers such as D-dimer and troponin as well as ultrasound imaging of the lungs, heart, and legs upon the early presentation of symptoms, which could signal an earlier need for aggressive intervention and treatment.
How much easier would it be if we had instant access to our medical records, especially imaging, so we could make real-time decisions on our care and even get a second opinion in a timely manner? The reality is that although HIPAA mandates our right for access to our medical records, get copies of them, and request chances be made to them, policies differ depending on facility which hinder a patient's ability to get access real-time. Some charge to release the records, asking patients to cover the 'administrative costs.' Some wait until the very last moment to send under HIPAA's 30-day requirement between the time the request was made and honored. Some even take advantage of a one-time 30-day extension, further delaying the release of records. The delay in getting those records could cost life and limb. But there is some light on the horizon with the new Cures Act as well as innovation by entrepreneurs around medical records access. Leading the discussion is Bill Anderson, Advisor to Digicare, which is creating a platform that at its foundation democratizes access to all medical records for the patient across facilities, and even more, using a special algorithm brings the information to life by highlighting key medical terms and offering patients the ability to instantly get them defined and explained. He's also VP of Partnerships for Briya, which allows patients, physicians, and researchers, and data analytics tools to be able to access and make sense of data from any location, in any format, in near real-time. In the last half of the show, a patient shares her story of perseverance with Peripheral Artery Disease (P.A.D.), a chronic circulation issue impacting mainly the legs, that impacts one in five over age 60. Diagnosed and treated at early onset of symptoms such as leg cramps and pain in the buttocks, hips, thighs, or calves, reduces a patient's risk of heart attack, stroke, and amputation.
Hosts Interventional Cardiologist Dr. John Phillips and Emmy Award-winning journalist Kym McNicholas are talking about innovation around ALS. Most are familiar with ALS now more than ever because o the famous internet ice bucket challenge involving the pouring of a bucket of ice water over a person's head, either by another person or self-administered, to promote awareness of Amyotrophic lateral sclerosis , or ALS. ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle. Most people with this disease begin with muscle stiffness or weakness. But they eventually lose the ability to walk, dress, write, speak, swallow, and ultimately breathe on their own when the muscle paralysis spreads to vital organs such as the lungs. We are talking about it here on the Heart of Innovation for three reasons: First, although it's not considered a vascular disease, some researchers believe that an ALS-linked gene mutation could cause disruptions in the blood-spinal cord barrier, causing the neurovascular inflammatory response, which is ALS; Second, due to the lack of mobility as ALS progresses, many people with ALS end up with circulation issues in the legs (Circulation issues in the legs is known as peripheral vascular disease. We've talked about that at length on this show where arteries start hardening and the flaps that help usher blood flow back to the heart start malfunctioning.); Third, innovation around treatment and disease management has led to a longer, better quality of life for people with ALS due to organizations such as the Gleason Foundation, founded by former New Orleans Saints NFL great Steve Gleason. Kearney Gray, Director of development for the Gleason Foundation talks about how patient-driven innovation with communication and mobility are helping patients to live a longer, better quality of life. The Gleason foundation has played an integral role in raising the patient voice to create change in care, empowering companies to create new, novel approaches to improving communication for people with ALS, and not only educating lawmakers on ALS, but inspiring them to take action to help elevate care. Dietitian Melissa Hooper also joins the discussion to talk about the importance of nutrition in slowing the progression of disease and improving the quality of life of people with ALS. Since people with ALS maintain their cognitive ability throughout disease progression, knowing what's to come and what's happening can impact mental well-being. So, Kathryn Walker, CEO, MSN-Anesthesia, MSN-Psychiatry, at mental wellness treatment centers, Rivatalist, adds to the conversation with available options to improve mental health.
Description:
Having a chronic illness and/or a surgical procedure can be scary. In this episode of the Heart of Innovation, we are talking about pre and post surgery stress and anxiety, especially tomophobia, 'the fear of surgery'. In the hospital, people are given medicine to help them sleep or sedatives to put them at ease. At home, it's not always as easy. Either way, many times the hurry up and wait game for any procedure is sure to put you on edge. The Way To My Heart Nurse Practitioner Kay Smith along with CRNA Kathryn Walker, CEO of Rivitalist , a group of mental wellness centers and her colleague Beth Ward, a Licensed Clinical Social Worker (LCSW) talk to hosts Kym McNicholas and Interventional Cardiologist Dr. John Phillips about how to discuss doubt, fears, and anxiety with your healthcare team. They also offer tangible, actionable ways in which you can put yourself at ease pre and post surgery.
Grady, a family member of a patient who is now recovering from open heart surgery kicked off the discussion with a candid description of his experience leading up to his brother's procedure. He discussed the fear driven by the procedure itself but also the revolving door of physicians, the numerous pre-operative tests, the gaps in communication at times, and worries about what happens if treatment doesn't work. He also drove home the importance of a patient's healthcare team to recognize the stress and anxiety of a patient's family and to keep them in the loop to ensure all are on the same page so they can more effectively support the patient and help accelerate versus hinder the healing process.
Marcia, a patient with peripheral artery disease (P.A.D.), asked the therapists and Dr. Phillips about how to deal with post-surgery symptoms and the emotional stress that comes with so many questions that may arise between appointments with her healthcare team. Most patients don't have a physician or clinician on speed dial every single time a question pops up. So, what might be a small, normal post-surgery side effect, can be magnified the longer a patient waits for an answer.
A big takeaway from CRNA Kathryn and LCSW Beth is to recognize that stress, anxiety, and fear step from worrying about the future and things you can't control. They say the key is to focus on what you can control. Draw a circle on a piece of paper and place inside the circle all of the things you are worried about that YOU can actually do something about. That includes planning for options to accelerate recovery, such as starting to contemplate rehab possibilities, setting up a meeting with a dietitian, obtaining items for improved comfort and mobility at home, etc. Focus on those. For the others, sit down and come up with questions that may arise around them which can be discussed with your healthcare team or that of your family member.
In summary, it's most important to not burden yourself with regrets of the past and the 'what if's' of the future. Catch them coming into your mind, and remind yourself to look for things that are within your power tand control to change and do right now.
For more, listen to this powerful conversation: