AL Amyloidosis

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.

Learn More →

“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.

Learn More →

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.”

Learn More →

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.

Learn More →

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.

Learn More →

Questions?
Contact ARC’s Patient Services Team →