Jennifer Sax

Director of Communications, Good Shepherd Community Care

By Val Walker

1. What sparked your interest in having conversations about our end-of-life care?

When I was 14, I began volunteering for a hospice in Maine where my mother worked as a nurse—and she still is a hospice nurse. Even as a teen, and throughout my life-- both personally and professionally,  I have witnessed how having conversations about one’s end-of-life wishes has impact on the way we live our lives.  These conversations are not just about dying. They are about how we want to live until we die. They are about taking responsibility, expressing our values and advocating for our care.

2. What are the most important reasons for having conversations with our loved ones and providers about the end of our lives?

Studies consistently report that one of the single most important factors in whether patients and family members report a positive end-of-life experience is whether or not they have had a conversation with their family and loved ones about their wishes. We find that when people have had these conversations, caregivers and loved ones suffer less complicated grief – and have less guilt, confusion and stress.

As providers, by initiating “the conversation” we have the opportunity to significantly and effectively change the kind of care people receive.

I’m a firm advocate for having these conversations from an early age. Life can be unpredictable and it’s never too late, until it is.  The earlier and more frequently we can be having these conversations the more comfortable we will become and the less likely we are to end up making decisions in crisis.

3.  As a communications professional, how do you currently advocate for having end-of-life conversations?

As part of my role in directing the programming of Good Shepherd Institute, I frequently have the opportunity to raise awareness and promote community dialogue around end-of-life issues and planning. I believe that we are in the midst of a pseudo “social revolution”  towards increasing people’s comfort with end-of-life issues ---advance care planning is an integral piece.

There are lots of wonderful organizations out there doing this work. I recently participated in a new media campaign for The Conversation Project and we have had the pleasure of hosting its founder, Ellen Goodman, at one of our Institute Dinners. Good Shepherd is also a partner of Honoring Choices Massachusetts and we participate annually in National Healthcare Decisions Day (April 16th) by sponsoring community programming and education. This year we are hosting “Who’s Your Proxy” as a fun and interactive way to take some of the “edge” and stigma away from these topics.

4. Because you’re so active in teaching the importance of end-of-life conversations, how do you envision the healing role of conversation in general for health care?

With the influx of the electronic medical record and changing health care regulations, I believe we have been at risk of discouraging conversations between patients and providers. That said, there are advocates for change out there (Dr. Atul Gawande, Being Mortal) and certainly some Medicare reform that speaks to the importance of these conversations. The bottom line is that I think people need to be advocates for themselves and know that they can “open the door” to these conversations – not only with family and loved ones, but with providers as well.  For so long we have been a society focused on cure. Having these conversations is about shifting our focus to what is truly important.

I couldn’t agree more, Jennifer. Thanks so much for speaking with me today!

I found Jennifer’s training resources for end-of-life conversations to be very helpful, and have listed below the links, for further reading:

Good Shepherd Community Care

http://www.gscommunitycare.org

The Conversation Project, and Founder, Ellen Goodman

www.theconversationproject.org

National Health Care Decisions Day (April 16, 2016)

http://www.nhdd.org

Honoring Choices Massachusetts

http://www.honoringchoicesmass.com

The Institute for Healthcare Improvement

www.ihi.org

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

This originally appeared in Modern Loss. Republished here with permission.

I gave my inaugural eulogy at fourteen. When my best friend Liz passed away from osteosarcoma after one year of unsuccessful treatment, her mother asked if I would share something at the service. I seized the opportunity, as it seemed like a potential antidote to the grief roiling inside me.

For days, I immersed myself in boxes of photographs and stacks of letters that told the story of our friendship. I spent hours feverishly recording my memories, depicting her mischievous smile, glittering eyes, and elegant voice. On the morning of her service, I rose to the pulpit with quivering hands but a strong heart, and delivered a eulogy that was humorous, commemorative, and authentic.

Little did I know at the time what an extraordinary journey this act had launched—into myself, into writing, and into healing.

To read more, click here.

Sara and Kerry met as students at Bates College in 2001. They were together for eight years, and planned to get married in August 2010. Last June, just two months before the wedding, Kerry committed suicide using a gun he purchased legally that same day. He was 27 years old. This was a complete surprise to everyone who knew him, and obviously devastating.

At the time, both Sara and Kerry were in graduate school in the Northwest: Sara was in Seattle, Washington, getting a Ph.D. in Molecular Biology, and Kerry was in Eugene, Oregon attending law school and pursuing a concurrent masters degree in conflict and dispute resolution. They completed their studies late last spring, full of energy, ambition and promise, and were planning to move back east before the wedding, for their careers and to be closer to Sara’s family in Maine. For Kerry, the move never happened.

Kerry had been plagued by chronic pain in his arms, back, and legs for over a year. As a student, he did not have cohesive medical care, which meant he saw multiple providers and had to tell his story over and over again. The cause of Kerry’s pain was never determined. None of his physicians had followed him over time, and none knew him well as a result. Kerry was not one to complain about pain, and indeed, until he developed these debilitating conditions, he had been an athlete in excellent physical health. At times, given the lack of a clear diagnosis, he felt that the legitimacy of his pain was called into question. Ultimately, he was left with a sense of desperation and hopelessness.

Suicide is a major public health problem. According to 2007 data, it is the 11th leading cause of death overall and 4th leading cause of death for adults 18 to 65 in the United States. Everyday, approximately 90 Americans commit suicide.

What can be done to prevent suicides like Kerry’s? Recently, Sara and Kerry’s father, Dr. Mike Lewiecki, addressed this issue in an article, “Time to Reconsider,” published last month in The Journal of the American Medical Association.

Here, Sara (who is now a post-doctoral fellow in molecular biology at Massachusetts General Hospital) speaks openly about her experience of Kerry’s suicide, and about trying to move forward in the face of such a tragic loss.

Originally published on WBUR Commonhealth Blog, April 28, 2011

Resources:

For information about suicide, visit

http://www.mayoclinic.com/health/suicide/DS01062

http://www.cdc.gov/ViolencePrevention/suicide/

To learn more about suicide prevention and treatments after suicide attempts, visit

http://www.afsp.org/preventing-suicide/treatment

For support after someone you know died by suicide, visit

http://www.supportaftersuicide.org.au/what-to-do/information-for-friends-and-family

1-800-273- 8255 is the 24-hour National Suicide Prevention Lifeline in the United States that is ready to answer calls from anyone in a suicidal or emotional crisis and provide counseling and referrals. For this service in Spanish, call 1-888-628-9454.

http://www.suicidepreventionlifeline.org/