In this ARC TALKS webinar, Jill Waldron, NP and Rebecca Kirch provide guidance on navigating care choice options for amyloidosis patients and caregivers during health decline.
Rebecca provides tips for communicating with healthcare professionals, including recommendations for how to create an end-of-life care plan with a healthcare team. Rebecca also discusses factors to consider when deciding which care option is best, while also providing resources for emotional support. In addition to discussing the stages of amyloidosis progression, Jill discusses the importance of end-of-life care, while addressing the challenges caregivers and patients may experience.
The presentation is followed by a Q and A section.
Original Presentation Date:
November 10, 2023
Key Webinar Highlights:
0:00 — Introduction
3:33 — Start of Rebecca’s presentation
4:40 — Importance of communicating with the healthcare team
12:55 — Person-centered communication is palliative care’s core competency
14:24 — Discussing preferences and preparing plans
17:04 — Medical decisions that may need to be made
19:08 — Person-centered care planning tools
25:57 — Palliative care is a lifeline for quality of life
27:28 — Start of Jill’s presentation
29:29 — Definition of palliative care
31:04 — Case-study example
33:24 — What is home health
34:33 — What is hospice?
36:38 — How palliative care is different than home health and hospice care
39:40 — Different modes of palliative care
40:31 — Common topics to discuss in palliative care
44:41 — Causes of death in cardiac amyloidosis
46:43 — Qualifications for home palliative care
47:36 — When to bring up palliative care
49:21 — How to bring up palliative care discussions
50:01 — Case study continued
52:32 — Presentation summary
54:06 — Q & A and close of webinar
Additional Resources:
Care Planning Guide
Starting a care plan can be overwhelming. The National Patient Advocate Foundation has designed this guide to make it easy for you to start your own care plan by helping you organize your thoughts about your health and well-being.
“Can We Talk About…” Practical Guides
A series of guides for patients and caregivers from the National Patient Advocate Foundation covering caregiving, preparing for a telehealth appointment, and talking about your needs with your healthcare team.
The “Hello” Game
Mentioned during the webinar, Hello is a conversation game. It’s an easy, non-threatening way to start a conversation with your family and friends about what matters most to you. The game is sold by a company called “Common Practice.”
Caregiver Intensity Score
Caregivers are the bedrock of our community. Supporting those we love is an honor, but it can also be intense. Do you know your Caregiver Intensity Score? Take a minute to check in on yourself and find out — you’ll find out you’re not alone in this and get connected to things that can help.
Palliative Care Guide
Most of the time, you have to ask your doctor for a palliative care referral to get palliative care services, but how do you do that and how should you prepare for that conversation? Learn more about talking with your doctor, finding a provider, and other Palliative Care tips from getpalliativecare.org.
Questions?
Contact ARC’s Patient Services Team →
