MAKING A DIFFERENCE
An end-of-life conversation is never easy, but it’s always necessary.
Amidst the scourge of the COVID-19 pandemic, which has taken the lives of more than 100,000 people throughout the country and prompted an urgent focus on end-of-life issues, it would seem the difficult conversations need to happen sooner than later.
The arrival of COVID-19 has given people a renewed consciousness of their own mortality and raised the relevancy of end-of-life planning, according to Samantha Trad of Compassion & Choices, the nation’s largest end-of-life advocacy group.
“End-of-life planning is more urgent now than ever,” said Trad, a mother of two who recently got married during the pandemic. “Everyone should have the end of life experience they want.”
Unfortunately, many have suffered the loss of income due to COVID-19 and therefore can’t hire a professional to help them complete or update an advance directive or appoint a health care proxy.
An advance directive is a legal document that tells your doctor your wishes about your health care. A health care proxy is when someone is appointed to make sure a person has their end-of-life care wishes honored.
In 2015, then-Gov. Jerry Brown signed the California End of Life Option Act, a statute that allows certain terminally ill adults to request and obtain a prescription for medication to end their lives in a peaceful manner. The act outlines the process of obtaining such medication, including safeguards to protect both patients and physicians. It took effect in June 2016.
Compassion & Choices is at the forefront of the end-of-life issue, advocating for humane end-of-life for terminal patients with guidelines in place. The organization, which stresses the importance for everyone to obtain both an advance directive and a health care proxy, has developed ways to get vital information to the masses.
Due to the coronavirus, instead of focusing on advancing legislation, Compassion & Choices has set its sights on helping people plan their end-of-life health care by holding free webinars and providing free online tools to enable them to complete or update their advance directive and appoint a health care proxy to ensure their health care providers honor their wishes.
“We have COVID-19 tools to help people understand their options and how they can talk to their loved ones,” said Trad, Compassion & Choices state director for California and Hawaii.
Compassion & Choices has created a free online COVID-19 toolkit to help people understand their options. The toolkit, designed to lay the groundwork for conversations, comes in English (CompassionAndChoices.org) and in Spanish. The organization also offers free online webinars (CompassionAndChoices.org/webinarseries).
Through its webinar series, Compassion & Choices invites guests to talk about navigating their preferences for the end of life.
The goal, Trad said, is for people to feel more comfortable, informed and empowered after viewing the series.
Part of Trad’s job as a dual state director is to help implement state laws that give mentally capable, terminally ill adults the option to get prescription medication they can decide to take to peacefully end unbearable suffering and die peacefully in their sleep, at home, surrounded by loved ones.
“End of life has always been something I grew up thinking about,” said Trad, whose mother was diagnosed with a terminal illness. “It’s important. It gives you a perspective on how wonderful life is.”
Trad said Compassion & Choices advocates for improving and expanding the end-of-life.
“We want to empower everyone to chart their journey and their end of life options,” said Trad, who describes what Compassion & Choices does as “important work.”
“Some people think my work should make me depressed, but it doesn’t, it makes me value life.”
Sean Crowley, senior national media relations director for Compassion & Choices, said, “Having control over how the end is going to be is important.”
“We don’t want people to suffer,” he said. “It’s about what kind of care you do and do not want.”
Crowley, who has been with Compassion & Choices for seven years, said COVID-19 has changed the end-of-life game.
“COVID has us facing our mortality in an in-your-face kind of way,” he said. “It shows that anyone can die at any time and that is why you can’t put off these conversations anymore. Dying in isolation makes your advanced directive even more important.”
Starting a conversation about a difficult topic, and getting the message across to some cultural and ethnic groups, is emotional, difficult and a challenge.
Brandi Alexander is the national director of constituency for Compassion & Choices. She is responsible for outreach in the black, Latino, faith-based, LGBTQ and Doctors for Dignity communities.
Alexander, who has been with the organization for 16 years and has held her current post for two, said the black and brown community is unprepared for the end of life.
“Some cultures don’t like to talk about or prepare for something like that,” Alexander said. Often times when I’m talking in front of them, initially they are shocked. It has a lot to do with fear. We don’t want to face our own mortality and it’s even harder to think about losing our loved ones.”
To gently start the conversation, Alexander, who encourages people to talk before times of crisis, suggests it can be done during “happy times.”
“Occasions like Thanksgiving and family reunions are happy times,” Alexander said. “I call it talking turkey over turkey.”
Alexander said a very low percentage of black and brown people have advance directives for their end-of-life situations.
“We are the least likely to finish those documents,” she said. “Less than 30% of black people have it completed, while about 70% of the mainstream have completed the forms. This is something we can take control of and change.”
To keep the minority communities informed, Alexander works with the African American leadership and the Latino Leadership Council, which makes up a dozen community leaders from around the country — to strategize the outreach efforts.
“They take the info and share with their networks to advance our efforts,” she said.
“The Latin community and the African American community are the least likely to create a directive,” said Patricia A. Gonzalez-Portillo, national Latino media and constituency director for Compassion & Choices. “Latinos don’t want anything to do with it. We have some work to do there. We have to turn that around.”
Compassion & Choices has created resources designed to help chart end-of-life care.
The resources include Understanding Your Options, Using Telehealth to Reduce Your Risk, Advance Care Planning and Advance Directive Addendum.
Compassion & Choices’ findings reveal that when compared to white peers, blacks are far less likely to have completed a health directive. Whites are at 67%, while blacks are at 36%.
In the United States, black Americans bear a disproportionate burden of chronic conditions including cancer, heart disease and HIV. Far less is known about disparities in end-of-life care.
Compassion & Choices’ findings suggest black Americans are more likely to receive medical interventions and less likely to receive comfort care at the end of life.
There is a health disparity across the board,” said Trad, who received her master’s degree from Charles University in Prague, Czech Republic.
“Yes, it exists, even in end-of-life. It’s heartbreaking to see that some communities are affected more than others.”
“Our biggest message to the Latino community is what tools are available for them,” said Gonzalez-Portillo. “This is the time to get it done. Don’t wait.”
“Have the conversation now,” said Trad, whose husband is her health care proxy. “Talk to your loved ones. It will help you be prepared. Talking about death won’t kill you, but will help you get prepared. I want to receive as much treatment as possible within the realm of reason. If my brain is not working, then I would not want to continue.”
“Making a Difference” is a weekly feature profiling organizations that are serving their communities. To propose a “Making a Difference” profile, send an email to email@example.com.
By Darlene Donloe