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Making COVID Lemonade


As I contemplate life on my porch in late-May 2020, I feel many different emotions.

 

As a nursing home and hospice physician, I mostly feel sad that so many of the people I care for are dying—often without the basic comfort of a family member at the bedside. I also feel concerned and sympathetic for those whose lives have been—and will continue to be—devastated by either the loss of a loved one or the loss of their jobs, mortgages, businesses, and the familiarity and comfort of ordinary life, which may never be restored.

I feel guilty that my dogs, who used to accompany me to work in the nursing homes every day, are not allowed to go with me now for obvious reasons. I am angry at the lack of a defined, dedicated response from our government to protect these precious vulnerable elders. I am distressed by the polarization of our population, the venom that is spouted based on political differences, the baffling anti-science movement, the baffling politicization of things seemingly as neutral as a drug, and the seeming irrelevance to some people of facts. And although we keep hearing this is going to be a marathon, not a sprint, I have the sense we are not far out of the starting gate, I already feel exhausted. With Zoom meetings all day, nonstop news coverage, and a constant stream of new information in the scientific literature, it seems like it’s all-COVID, all the time. And I feel a little guilty that for my family and me, this pandemic is mostly an inconvenience and not something that will wreck our world or create an enduring hardship.
lemonade

I am an Optimist

At the same time, as an optimist, I am trying to make lemonade out of all this. What might we gain from this pandemic? There are obvious tangible gifts, like the favorable impact on the environment. People have learned the importance of handwashing and how to do it correctly. The “great pause” has given people the chance to take stock, reflect, hold space, and perhaps appreciate some of the small things we usually take for granted. We have learned how to use digital technology more widely for virtual doctor visits—even palliative care visits and end-of-life advance care planning discussions—and for professional meetings, webinars, town hall meetings, and the like. When we are practicing social distancing, it is clearly a blessing to be able to commune with others even without the actual physical hugs and handshakes (which may become a thing of the past, sadly). Support groups like 12-step meetings (AA, NA, etc.) now have a large online presence that is invaluable for those practicing recovery from addictions. For health care professionals, online support for burnout is also available.

We have also seen a huge outpouring of charitable work of all kinds, and the heroic contribution of first responders and healthcare workers, who put their own health on the line in service to others—like the certified nursing assistants who work for close to minimum-wage salaries, doing the backbreaking but essential work of providing direct care to debilitated, frail, dependent elders and other chronically disabled individuals. Now more than ever, their efforts should be appreciated and celebrated. 

Advance Care Planning

And during this time when we have more family time (either in-person or virtual), and when people of all ages are dying of this virus, I know more families have taken advantage of the down time to reminisce about loved ones who have already died and to discuss their own beliefs, treatment preferences and what is really important to them. It is the perfect storm for advance care planning! There are many online resources to help families broach these subjects and have deep, meaningful and often healing conversations. With its devastating pulmonary effects, COVID has helped make discussion of intubation and mechanical ventilation more of a household subject. I’ve had multiple conversations with nursing home residents about their treatment preferences, and some of them now say, “If I got the coronavirus, I would not want to be put on a ventilator.”

lemonade

These are difficult times, and this is a cruel pandemic in many aspects—and we will continue to suffer the direct and indirect consequences for a long time to come. But over time, as the dust settles, I am confident that we will have learned some lessons and will come out of it changed for the better in many ways. Let’s be kind to one another, tell our loved ones we love them, we forgive them, we ask their forgiveness, and we treasure our relationships with them.

That is certainly a half-full glass of lemonade, right?  We will get through this together.


Karl Steinberg, MD, CMD, HMDC

Dr. Steinberg has been a hospice and nursing home medical director in the San Diego area since 1995.  He is president-elect of AMDA – The Society for Post-Acute and Long-Term Care Medicine, a past chair of the Coalition for Compassionate Care of California and past president of the California Association of Long-Term Care Medicine.  He is vice president of National POLST and sits on the National Quality Forum’s Geriatrics and Palliative Care Standing Committee, is a certified healthcare ethics consultant, nursing home medical director and hospice medical director.

We appreciate working with Dr. Steinberg on end-of-life care issues and look forward to our continued partnership with the San Diego Coalition for Compassionate Care.  (Dr. Steinberg is pictured above with his wonderful Tessa, Charlotte and Josie.)

Photography by Ghislaine Guerin and Chris Montgomery.

We are growing up

End of Life Choices California is growing up.

We launched  in February 2019 as  just the spark of an idea.  An idea full of purpose, caring, enthusiasm and commitment.  The four of us came together to create a new nonprofit dedicated to providing accurate information and personal support to the seriously and terminally ill people of California.  We decided to name our organization End of Life Choices California to represent choice at the end-of-life. And as you will see, we have already come a long way.

On our way!

Since early February, we filed the appropriate papers with the State of California to form a non-profit organization. We built a resource-rich website that is very user friendly and welcoming. We are writing a regular blog, and getting new subscribers every day (subscribe here.) We have a Facebook page with more than 100 “likes” (like us!). We are preparing funding proposals and developing marketing and fundraising plans. We have formed two excellent teams to help guide us: our esteemed Board of Directors and a carefully chosen Advisory Committee. Our founding directors formed an Organizational Management Team which currently manages our day-to-day operations and volunteers. Our strategic plan includes continuing to develop a statewide service model and hiring an Executive Director, Program Manager, and Development Officer over the next 12-24 months.

First Training

We held our first Client Advocate Volunteer training in Los Angeles in early June and are holding our second Client Advocate Volunteer training in San Francisco on August 18, with another southern California training planned later in the Fall. See all our events here. Be sure to let us know if you’re interested in becoming a volunteer.

We have been doing all of this on faith, commitment and a deep sense of knowing we are doing the right thing: meeting the needs of Californians facing end of life decisions with factual, legal, and compassionate information and personal support.  We have fielded dozens of phone calls and provided support to a number of dying clients. We have already made at least a dozen presentations to community groups, senior centers, and hospices. We want to do more! Please feel free to share your ideas with us and also share about us to your friends and colleagues who might be interested in any service we can provide, or who may be looking for a speaker. Forwarding this blog post is a great way to do that.

Finally 501(c)(3)

Lastly, and importantly, we are happy to report that we recently received a letter from the Internal Revenue Service congratulating EOLCCA on being recognized as a tax-exempt non-profit public charity organized under Internal Revenue Code section 501(c)(3), back-dated to the day we incorporated in February, 2019. This means that if you want to help us keep growing by giving us a gift, those gifts may now qualify as a charitable deduction on your tax return.

We are thrilled that our early work has laid the groundwork for this growing organization that will make a difference in peoples’ lives.  We are truly growing up.  And, yes there’s more! We are honored to have received our first major donor gift of $10,000!

It is so gratifying to know that others believe in our mission as much as we do.

So no more training wheels for us.  We are moving forward purposefully, step-by-step, knowing we are doing something truly worthwhile for California, and trusting you will help. Together, we can advance public understanding and compassion for those making thoughtful decisions about managing terminal illness and their dying, and help bring peace and comfort to the loved ones who care about them. There is a social movement and change happening that is improving end of life choices and decision-making.  We are proud to be part of it.

If you would like to help us continue to grow our services and client support program, please visit EOLCCA  to make a donation online, or send a check to EOLCCA, 530 S Sierra Ave #30, Solana Beach, CA 92075.

With gratitude for your continuing support,

Judy, Karen, Claudia & Lynne
Founding Directors