Is this the perfect time for you to read, review and reflect on dying and the “what-if” questions?

Daily we learn more about the COVID-19 virus. We hear about outbreaks, number of cases and number of deaths on a global and local level. The topic of death is on the table in a very real way.  Death due to COVID19 is a reality for those who are very frail and vulnerable. People living with multiple serious illnesses AKA co-morbid conditions are at high risk. And to share what seems like a secret, whether we die from COVID19 or something else, now or later, we all will die.

So…. if you have the luxury of hibernating and reflecting and are looking for a most meaningful project, I highly recommend that you:

  1. Read Dr Atul Gawande’s book, “Being Mortal”
  2. Review the Serious Illness Conversation Guide
  3. Engage in Advance Care Planning, and
  4. Engage in conversations!

Read “On Being Mortal” by Dr Atul Gawande

Dr. Gawande will help you understand the challenges of dying in a health care system that aims to cure all.

In his book, Dr. Gawande clearly identifies the challenges of dying in a death-denying society. Move this incredible, engaging, easy to read book to the top of your list. It may help you to shift your thinking and see all health care decisions from a different perspective. Consider your health, consider the health of those you care for and care about. What questions does this bring forward for you?

Review the Serious Illness Conversation Guide

Dr. Gawande and team at Ariadne Labs developed the “Serious Illness Conversation Guide” to assist health care professionals to talk with patients and family members about the individual, their illnesses, what to expect, and prepare them to make informed decisions. Read through the guide, consider your own health, the health of those you care for. What questions do you want to ask of the health care team? What do you feel inspired to do/say/consider?

This may lead you to consider, “If I were suddenly to become critically ill, what would my priorities be? My goals? What are my fears about death? What is most important to me”

Engage in Advance Care Planning

Advance Care Planning will help you develop a clearer understanding of what you might want as your health declines, and will help you assign a Substitute Decision Maker who will speak for you and advocate for you, if and when you are no longer able to speak for yourself. Going through the process of your own Advance Care Planning will help you develop a deeper understanding of the challenges and decisions that the person and family must address.

If you are caring for a friend or loved one, work with them to engage in these conversation,  to help them to identify determine the care they want and do not want. You may want to bring in member of the health care team to help facilitate the conversation.

Know that Advance Care Planning conversations are not optional; they are essential. With current technology, it is possible to record the conversations in an audio format as well as written record.

There are many excellent resources to help with Advance Care Planning discussions. Of course, there are the fun “Care Planning Cookies” available  through Life and Death Matters ? to stimulate conversations about care giving preferences.

Michelle Pante and Reena Lazar are cofounders of WILLOW, and offer resources for exploring your    Offer a workbook to help you explore death and what it means to you.

The SPEAK-Up resources from the CHPCA, are part of their Advance Care Planning program. In the US, one of the favorite resources is Five Wishes.  The Chinese American Coalition for Compassionate Care created a card game based on the “Five Wishes” go to “Heart to Heart Care Deck” The card game, like the Care Planning Cookies, stimulates discussion while having fun.

Engage in conversation

Social hibernation does not mean social isolation. As you read, review and reflect, engage with friends, family and community in conversation. Use technology to connect and record your thoughts.

Speaking up now will help you know what you want, will help others know what you want, and will help the health care team to provide care that best honours who you are.

Do you have a favorite resource that you use? Please share!
Do you have a related experience or story? Please share!

Sharing – my birthday surprise from friends who figured that I needed to engage in conversation!!

Thanks to my very very dear friends who decided that the best way to celebrate my birthday was to paint an image of me wearing a thong on my birthday cake! (The artist is WENDI! The co-conspirators are Bonnie and Frankie!)

 

 

 


Don’t go whistling past the digital graveyard!

Written by Angela Bruce, RN

Thanks to Kaylee for directing us to a blog post that reminds us how important it is to get our digital house in order.  On August 10, 2019 she provided the link to this comprehensive guide containing current advice and instructions on how to plan for your digital legacy and your assets after you die. The author of the blog states,

With hundreds of millions of social media users, the number of social media accounts of dead people may outnumber those of the living in a few decades. 

But as you consider the eternal limbo of those accounts remember this cold, hard fact: In this digital age, your loved ones will be faced with the complexities of managing your digital assets after you die.

Accessing digital devices like computers, hard drives, tablets, and phones, may be impossible if your loved ones don’t have passwords or encryption keys. Not only may they lose irreplaceable photos, important letters and documents, there are financial assets that may be forever lost.

These monetary assets go far beyond your bank account. For example, Bond Brand Loyalty estimates there are currently $16 billion dollars in unredeemed loyalty points in Canada alone, and many of those dollars will never be redeemed if the owner has died with no arrangement to transfer ownership of the points. According to a report in the Globe and Mail, by the end of 2020, the average Canadian will have accumulated $10,000 worth of digital assets, including money stored in online payment accounts, loyalty program rewards, virtual currencies and online investment or bank accounts.[1]  Keeping track of your digital presence is a sound, personal, and economic practice.

Digital assets to consider when making an inventory of  your online presence include:

Financial Access

  • Bank accounts
  • Online payment accounts (such as PayPal)
  • Online seller accounts (like Amazon™ or eBay®)
  • Brokerage accounts
  • Cryptocurrency investments

Communication

  • Email accounts
  • Social media accounts
  • Forums or chat rooms
  • Blogs or websites you own
  • Online gaming accounts

Cloud Storage

  • OneDrive; Dropbox, GoogleDrive etc
  • Digital photos, videos and music files
  • E-books or audio books

Loyalty/Rewards Programs

  • Credit card loyalty program rewards
  • Travel rewards programs (such as Air Miles)
  • Retailer loyalty programs

Copyrights

  • Logos, illustrations, artwork or animations you own
  • Digital copyrights, trademarks or patents[2]

Adding to the confusion, there is a wide diversity in policies for dealing with the death of platform members.  Legislation on digital death has not kept up with the rapid pace of technological advancement.  Worldwide, there is a lack of established laws and this has allowed companies to choose their own rules.  Social media platforms have a patchwork of ways for dealing with a member’s death.  Customer loyalty programs may not be transferable. Purchased digital media assets, such as iTunes or eBooks, cannot be transferred.

Three decades ago, there was no such thing as planning for your digital death. Now it is increasingly seen as a task that is essential to ease the work of our loved ones after our death, allowing access to funds to pay bills, cover other expenses, and to manage or close accounts. Think of it as advance care planning for your digital life. Tackling this chore will save many hours of stress and heartache for your loved ones and potentially save priceless memories, assets, and facets of your life from being irretrievably lost in the cold vacuum of cyberspace.

Have you had any experiences dealing with digital death? Please share your story in the comments section!

Warm regards,

Angela Bruce

Looking for more information on this subject.

Death and Digital Property: What happens to your online life when you die?

 March 29, 2015 by Kath Murray

Creating a Digital Estate

April 5, 2015 by Kath Murray

 


[1] https://www.theglobeandmail.com/investing/globe-wealth/article-dont-forget-about-digital-assets-in-your-estate-plan/

[2] https://www.cibc.com/en/personal-banking/advice-centre/family-finances/estate-planning-for-digital-assets.html

Today is Advance Care Planning Day and Why it Matters

When someone says, “It was a good death” they may mean that from their personal perspective it was a good death. However, a death is only a “good death” if the person who is/was dying is honoured and their needs, preferences and goals are considered as life circumstances change, disease progresses and care plans are developed. In striving to honour the individual, perhaps then we can talk about a good death, an  appropriate or a person-centered death.

“Three-quarters of Canadians (74%) report having thought about end-of-life.” (1)

But how many of these individuals have talked with people close to them about their preferences? How many have spoken with their health care team and recorded their thoughts? How many have documented Advance Care Plans? If wishes and preferences are not shared and documented, it may be difficult to honour and meet a person’s wishes for an appropriate death.

This is where Advance Care Planning comes in.  Advance Care Planning is one step in helping a person experience a good death, an appropriate, or a person-centered death. Advance Care Planning can greatly assist health care professionals to provide best care, to support each person to live life fully until their last breath, and to honour them following death. In the next decade, Baby Boomers may start benefiting from the integration of a palliative approach in their care. As this large and vocal portion of the population reaches their senior years and deals with life-limiting illness, it is possible that engaging in Advance Care Planning may become as normal as developing birth care plans for expectant parents. 

Today is Advance Care Planning Day. It is your day to discuss what is important to you, what you think you might like when you are sick, when you are declining, and ultimately, when you are dying. This is your time to talk with those who are close to you, to record your thoughts, and share your thoughts with your physician or nurse practitioner. Begin the conversation today and continue to discuss plans as circumstances change.

Whatever your preferences, today is the day to open the door, and set a time to talk with someone who is important to you about your wishes.

The Speak-Up Campaign provides resources to stimulate conversations and guides to help you record thoughts. In the United States, the National Healthcare Decisions Day and the Conversation Project provides resources for making your wishes known. The Life and Death Matters Care Planning Cookies can stimulate conversations.

Go for it.

 

Medical Assistance in Dying – One Year Later

In the year since Bill C-14 passed, legalizing Medical Assistance in Dying (MAID), over 1300 Canadians have exercised their right to die[1] [2]. Depending on your feelings about this topic, this may feel like a large or small number. It terms of total deaths, MAiD accounts for approximately 0.6% of the total number of deaths in Canada.

Country

Percentage of total deaths

Netherlands (2015)3

3.75%

Belgium (2015)[3]

1.83%

Canada (2016-2017)

0.6%

Oregon (2016) [4]

0.37%

Compelling accounts of people who have requested and received MAiD are freely available online, and in the popular media for people wishing to learn what the process is like, and how family might be affected by the dying person’s decision to end their life. Two examples of such stories are:

Where Do You Stand on Medical Assistance in Dying/Physician Assisted Dying?

Excerpted from Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse, 2016

What is currently missing from the commentary is information about how nurses and other health care professionals (HCPs) are deciding whether to support MAiD, participate in MAiD or oppose MAiD. Dr. David Wright, from the University of Ottawa, developed a series of questions to assist HCPs in discovering how they feel about MAiD. This series of questions are included in the Nurse’s text to specifically assist nurses to understand their own response to MAiD. At the end of the series of question is feedback that can assist and guide the next steps for health care professionals.

Featured below is the first of these questions . Respondents use the horizontal colour thermometer to identify the intensity of their If you are struggling to determine your position about MAiD, you may want to consider using these questions.

 

Accessing Education to Make an Informed Choice About MAiD

Fortunately, there are many webinars and online courses that will help new and established health care professionals learn about MAiD, the rights and obligations of health care professionals, and to make an informed decision about their desired level of participation. Examples of education currently available are:

  • Association of Registered Nurses of BC (ARNBC)

ARNBC offered a webinar, “Medical Assistance in Dying: A Year in Review,” with a special focus on the context of nursing. A video and PowerPoint series are available at this URL

  • College of Registered Nurses of BC (CRNBC)

CRNBC offers online course for assessors and prescribers involved in MAiD, running until September 2017. Access this course using this URL

  • Life and Death Matters – In our own corner of education the nurses text, Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse, includes an extensive section on MAID/Physician Assisted Dying that includes relevant information for nurses in Canada and the US. A preview of the nurses text can be viewed here.

Life and Death Matters also has a newly published resource on MAiD for front line caregivers using the text, Integrating a Palliative Approach: Essentials for Personal Support Workers or Integrating a Palliative Approach: Essentials for Nursing Assistants. This resource discusses the latest legislation about assisted dying (passed after the text was published), the roles of front line caregivers and ways to communicate about assisted dying. The resource is available free of charge – please email us for your copy.

Moving Forward with MAiD

New CNA Code of Ethics for Registered Nurses Includes MAiD

The ethical and moral rights of Canadian registered nurses to make their own decisions about MAiD are protected in the new Code of Ethics for RNs issued by the Canadian Nurses Association.

Part 1: D Honouring Dignity, 12 reads:

Nurses understand the law so as to consider how they will respond to medical assistance in dying and their particular beliefs and values about such assistance. If they believe they would conscientiously object to being involved with persons receiving care who have requested such assistance, they discuss this with their supervisors in advance.

Code of Ethics for Registered Nurses (CNA, 2017)

Participants Needed to Research Nurse’s Perspectives on MAiD

Dr. David Wright and his team are currently recruiting across Canada for a research study on the perspectives of hospice palliative care nurses regarding the ethics of MAiD. They are interviewing registered nurses now and possibly a second time in one year. Anyone interested in participating, but especially anyone from the provinces of Saskatchewan, Manitoba, Quebec, or any of the Maritime provinces, as well as any of the territories, please contact MAiD.Nursing@uottawa.ca.

Input Requested to Expand MAiD to People Not Addressed in Current Legislation

Bill C-14 does not address the needs of people diagnosed with dementia who want to request MAID in advance, nor does it address the requests from mature minors or from individuals who sole medical condition is mental illness. The Council of Canadian Academies (CCA) was asked by the Government of Canada to further study three particularly complex types of requests for MAiD. They have been charged with the following question:

What is the available evidence on, and how does it inform our understanding of medical assistance in dying (MAID) in the case of mature minors, advance requests, and where mental illness is the sole underlying medical condition, given the clinical, legal, cultural, ethical, and historical context in Canada?

Your input is requested and can be provided in one of these ways:

  • Organizations: Submit information here
  • Individuals, you may be able to offer your input through your professional association. For example, the ARNBC is requesting your input as they prepare their submission to the expert panel. Complete their questionnaire before August 18th.

HPNA Position on Assisted Dying

  1. HPNA Position Statements Endorsements – HPNA recently updated 2 new Position Statements listed below. If your association is interested in endorsing the Position Statements, please contact HPNA.

Last Thoughts

My hope is that all individuals will be encouraged and able to participate or not participate in MAID to the degree that they are comfortable, and that every person will be supported with kindness and empathy, just as we desire to provide kindness and empathy to those we care for.

What does this mean in action? I am interested in hearing your views….


[1] http://www.cbc.ca/news/health/medically-assisted-dying-canadians-rob-rollins-1.4056700

[2] https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-dec-2016.html#t1

[3] http://www.dyingforchoice.com/docs/AssistedDyingPracticeInBeneluxWhitepaper1b2016.pdf

[4] http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/
DeathwithDignityAct/Documents/year19.pdf