Skip to main content

Main menu

  • Home
  • Content
    • Current issue
    • Past issues
    • Early releases
    • Collections
    • Sections
    • Blog
    • Infographics & illustrations
    • Podcasts
    • COVID-19 Articles
  • Authors & Reviewers
    • Overview for authors
    • Submission guidelines
    • Submit a manuscript
    • Forms
    • Editorial process
    • Editorial policies
    • Peer review process
    • Publication fees
    • Reprint requests
    • Open access
    • Patient engagement
  • Members & Subscribers
    • Benefits for CMA Members
    • CPD Credits for Members
    • Subscribe to CMAJ Print
    • Subscription Prices
    • Obituary notices
  • Alerts
    • Email alerts
    • RSS
  • JAMC
    • À propos
    • Numéro en cours
    • Archives
    • Sections
    • Abonnement
    • Alertes
    • Trousse média 2023
  • CMAJ JOURNALS
    • CMAJ Open
    • CJS
    • JAMC
    • JPN

User menu

Search

  • Advanced search
CMAJ
  • CMAJ JOURNALS
    • CMAJ Open
    • CJS
    • JAMC
    • JPN
CMAJ

Advanced Search

  • Home
  • Content
    • Current issue
    • Past issues
    • Early releases
    • Collections
    • Sections
    • Blog
    • Infographics & illustrations
    • Podcasts
    • COVID-19 Articles
  • Authors & Reviewers
    • Overview for authors
    • Submission guidelines
    • Submit a manuscript
    • Forms
    • Editorial process
    • Editorial policies
    • Peer review process
    • Publication fees
    • Reprint requests
    • Open access
    • Patient engagement
  • Members & Subscribers
    • Benefits for CMA Members
    • CPD Credits for Members
    • Subscribe to CMAJ Print
    • Subscription Prices
    • Obituary notices
  • Alerts
    • Email alerts
    • RSS
  • JAMC
    • À propos
    • Numéro en cours
    • Archives
    • Sections
    • Abonnement
    • Alertes
    • Trousse média 2023
  • Visit CMAJ on Facebook
  • Follow CMAJ on Twitter
  • Follow CMAJ on Pinterest
  • Follow CMAJ on Youtube
  • Follow CMAJ on Instagram
Salon

Best endings

Kathy Kastner
CMAJ January 08, 2013 185 (1) 96; DOI: https://doi.org/10.1503/cmaj.120853
Kathy Kastner
Ability4life.com, Toronto, Ont.
Roles: Founder/CEO
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • Article
  • Figures & Tables
  • Related Content
  • Responses
  • Metrics
  • PDF
Loading

My mom died in 1982. The cause of death was pneumonia, after surgery and radiation for a brain tumour. She’d made clear: “I want you to do everything possible to keep me alive.” Thinking back, I didn’t even know what I didn’t know. Much less what to ask. Or what could have been.

Fast forward to 2002, two decades after her death. I was producing patient education programs for television networks broadcasting in hospitals across North America. At the behest of our US hospitals, I created a short video about advance directives. Surveys with patients before and after watching proved the video met its objective to educate on the reason for, and importance of having an advance directive. In addition, 90% of respondents indicated “I need help completing.” Nowhere during this process did I consider there was more to dying wishes than do-not-resuscitate orders, cardiopulmonary resuscitation (CPR) and maybe intubations.

Then, in 2009, I began my foray into social media. Already LinkedIn, I’d flirted with Facebook. But it was Twitter that opened my eyes to a major gap in end-of-life knowledge. On weekly hour-long tweetchats, doctors, nurses, clergy, social workers, psychologists, researchers and educators shared their pain, passion and experiences in their mission to help the elderly and terminal have a peaceful, dignified end of life: #EOLchat (end of life) #HPM (hospice and palliative medicine) #DWDchat (death with dignity).

Flummoxed at first by much of the terminology (code, partial code, Dx, Tx), I summoned courage and apologized for my ignorance. To my surprise and delight, my “real person’s” request for clarification was greeted with enthusiasm: “TY: need 2 b reminded that pts need help w jargon.” What a gift! I had my own personal multidisciplinary consultants answering my queries — often with links to research. I asked: “Do you think we [real people] know about CPR mostly from TV?” Presto: links to studies.1 Then came a study showing surrogate decision-makers suffer from post-traumatic stress disorder.2

Figure
Image courtesy of © 2013 Thinkstock

My social media life evolved to include blogs, forums and videos, such as one on geripal.org, which reveals the heartache of two daughters with different hopes and perceptions of their dying mother’s wishes. There are also Facebook groups, such as the one for those with implantable cardiac devices (ICDs) where I learned the life-saving electrical shocks ICDs deliver to hearts in otherwise healthy bodies are nasty and upsetting at life’s end.3

What I am learning through social media is that a “good death” is often fraught with complexities and conundrums, conflicts and confusion, intricacies and nuances, options and issues. The more I learn, the more I realize why it’s impossible for real people to effectively heed the constant cry I hear from dedicated health care professionals: “If only people talked about it more, so much grief could be avoided.” The thing is, we don’t know enough to know where to start, what to ask and what to consider. Not one other “real person” I spoke to knew how much they didn’t know.

This realization prompted me to embark on my own journey. I turned to my virtual community on Twitter and asked for help: “What would you like us real people to know?”

Many emphasized that the question to ask (about any intervention) should not start and end with “What’s the rate of survival/success?” Instead, to understand the short- and long-term implications of the intervention, ask: “What will recovery ‘look like’?” and “What’s the long-term impact on quality of life and function?”

Next came the complications of hydration and nutrition at life’s end. I learned that as the body winds down appetite diminishes. I now feel better informed to make decisions about when I would or would not want a nasogastric tube or percutaneous endoscopic gastrostomy.

I’ve also come to understand that end-of-life suffering isn’t only about physical pain it’s also about emotional and spiritual pain. The palliative and hospice Twitter groups dramatically changed my perception of palliative care as I learned the impact and benefits of changing the focus at life’s end from cure to comfort.

Twitter’s my end-of-life 101.

As my journey continues, it’s Twitter I still look to for insights, links to resources and research. I’m pleased that the virtual universe is so supportive of this real person’s attempt to become educated about end-of-life interventions and considerations.

If I knew then what I know now, my mother’s last days might have been different. Rather than focusing on survival, we’d talk about expectations for quality of life, functionality and comfort care. My mom was a researcher, documentary producer and life-long learner who would’ve appreciated my technology-enabled end-of-life education, as chronicled in best-endings.com.

Thinking through life and its end is a more reflective experience than I anticipated. It’s giving me a whole new perspective on living.

Footnotes

  • For references, see Appendix 1, available at www.cmaj.ca/lookup/suppl/doi:10.1503/cmaj.120853/-/DC1

PreviousNext
Back to top

In this issue

Canadian Medical Association Journal: 185 (1)
CMAJ
Vol. 185, Issue 1
8 Jan 2013
  • Table of Contents
  • Index by author

Article tools

Respond to this article
Print
Download PDF
Article Alerts
To sign up for email alerts or to access your current email alerts, enter your email address below:
Email Article

Thank you for your interest in spreading the word on CMAJ.

NOTE: We only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. We do not capture any email address.

Enter multiple addresses on separate lines or separate them with commas.
Best endings
(Your Name) has sent you a message from CMAJ
(Your Name) thought you would like to see the CMAJ web site.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
Citation Tools
Best endings
Kathy Kastner
CMAJ Jan 2013, 185 (1) 96; DOI: 10.1503/cmaj.120853

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero
‍ Request Permissions
Share
Best endings
Kathy Kastner
CMAJ Jan 2013, 185 (1) 96; DOI: 10.1503/cmaj.120853
Digg logo Reddit logo Twitter logo Facebook logo Google logo Mendeley logo
  • Tweet Widget
  • Facebook Like

Jump to section

  • Article
    • Footnotes
  • Figures & Tables
  • Related Content
  • Responses
  • Metrics
  • PDF

Related Articles

  • PubMed
  • Google Scholar

Cited By...

  • No citing articles found.
  • Google Scholar

More in this TOC Section

  • The law and physician-assisted dying
  • Care, compassion, respect
  • Revisiting Rodriguez
Show more Salon

Similar Articles

Collections

  • Topics
    • End-of-life care & decisions
    • Health technology

 

View Latest Classified Ads

Content

  • Current issue
  • Past issues
  • Collections
  • Sections
  • Blog
  • Podcasts
  • Alerts
  • RSS
  • Early releases

Information for

  • Advertisers
  • Authors
  • Reviewers
  • CMA Members
  • CPD credits
  • Media
  • Reprint requests
  • Subscribers

About

  • General Information
  • Journal staff
  • Editorial Board
  • Advisory Panels
  • Governance Council
  • Journal Oversight
  • Careers
  • Contact
  • Copyright and Permissions
  • Accessibiity
  • CMA Civility Standards
CMAJ Group

Copyright 2023, CMA Impact Inc. or its licensors. All rights reserved. ISSN 1488-2329 (e) 0820-3946 (p)

All editorial matter in CMAJ represents the opinions of the authors and not necessarily those of the Canadian Medical Association or its subsidiaries.

To receive any of these resources in an accessible format, please contact us at CMAJ Group, 500-1410 Blair Towers Place, Ottawa ON, K1J 9B9; p: 1-888-855-2555; e: cmajgroup@cmaj.ca

Powered by HighWire