Palliative Care – a Human Right – so apparent during COVID

Deaths from COVID-19 are approaching 3 million world-wide. Much of the discussion about ethical issues has centered around the availability of ventilators, but little has been said about the need and the responsibility to provide palliative care, ways to integrate a palliative approach for those who are seriously ill, and how to best support those who may or many not get (or want) a ventilator.

In Ontario palliative care specialists helped and provided care in the long term care facilities hardest hit by COVID. But specialist cannot do this in isolation.

In the Journal American Medical Association, article titled, “Integration of Palliative Care into All Serious Illness Care as a Human Right” Rosa, Ferrell and Mason wrote:

“COVID-19 has highlighted that every clinician needs knowledge and skills in the fundamentals of palliative care.“

Palliative care is not dependent on life-saving interventions. It may very well include a ventilator, but it is ultimately structured around the individualized wants and needs of the patient. It includes alleviating suffering and managing complex communications, psychosocial dynamics, fluctuating symptom management needs, and spiritual care throughout the dying process.

Every patient treated with a ventilator also needs palliative care. It is not an either-or clinical proposition, but rather a both-and moral imperative.

COVID-19 has accentuated the need for clinicians to have frequent conversations with patients and families about dying. The pandemic has forced many healthy people to confront rapid-onset, life-threatening trajectories of acute illness. Patients are dying without their loved ones, and families are grieving alone. For every person who dies, an average of 9 others are profoundly affected and grieve.2 COVID-19 has interrupted the cultural and community practices for coping with death, raising concerns about the pervasiveness of grief and loss associated with the pandemic…. 

Access to palliative care is a human right. Our inability to deliver it in the setting of COVID-19 and other serious illnesses is a human rights violation. Education… is needed now.

Personal Support Workers and nurses (both in field and in training), like all health care providers, need the tools and foundation to know how to support individuals living and dying with COVID-19 or living and dying with any life-limiting illness. Now.

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.