NETWise Episode 33: The Power of Knowing: Mortality & End of Life
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Published 2024-02-16
There is also a lot of stigma and discomfort in talking about end of life. The complex nature of neuroendocrine cancer and the variability in its progression can make it hard to predict outcomes, adding to the uncertainty and difficulty in discussing the topic. There is also power in knowing more about this journey and especially the resources that are available for this stage of living. I wanted to make space to talk about something that is inevitable- that a part of living is dying.
Knowing about end-of-life care can empower you to make informed decisions about your health and quality of life. Understanding the trajectory of neuroendocrine cancer and the options available for end-of-life care can help us navigate difficult decisions with more confidence and clarity. It allows us to plan ahead, discuss your preferences with healthcare providers, and ensure your wishes are respected, leading to a more dignified and comfortable end-of-life experience.
When you listen to this episode, pay attention when Josh Mailman mentions “enjoying every sandwich” and finding your “what matters most”. There is indeed a power in knowing.
In this episode of NETWise we discussed this paper (link below) that you can share with your doctor or hospice provider. Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care in a resource for you. erc.bioscientifica.com/view/journals/erc/30/7/ERC-…
To learn more about advanced directives go here: www.nia.nih.gov/health/advance-care-planning/advan…
To download a copy of the transcript for this episode go here: netrf.org/podcast/netwise-episode-33/
To listen to other NETWise Episodes: www.netrf.org/podcast
NETWise is a podcast featuring neuroendocrine cancer experts and patients, produced by the Neuroendocrine Tumor Research Foundation (NETRF) in Boston, MA, USA.