Steve Pantilat on the Truth Behind the Myths About Palliative Care

Palliative care expert and TEDMED 2018 speaker, Steve Pantilat, is a leader in transforming the healthcare system and creating innovative programs to improve the care and quality of life of people living with serious illness and their families. Watch his Talk, “Why palliative care is essential in the face of serious illness” and read his blog post below to learn more about palliative care.

As people everywhere are living longer, they are likely to spend some portion of their lives, years or even decades, with a serious illness. Receiving a diagnosis of heart failure, dementia, cancer, Parkinson’s disease, emphysema or any of the other countless chronic and life-threatening illnesses is shocking. It can send you into a tailspin with the fear that your life is over. And yet, even in the face of serious illness it is possible to experience great joy, deep love, profound gratitude and strong hope. Finding the best care you can for your serious illness is an important first step. At the same time and right alongside that care, you should get palliative care. Unfortunately, myths about palliative care keep people from asking for it and getting it. Don’t let that happen to you or to someone you love. Here are the truths behind the myths. Bottom line: palliative care can help you live better, happier, and quite possibly longer.

Myth: People with serious illness have to choose between living well and living long.

Truth: Palliative care helps you live better and just as long.

Although many people think that there has to be a trade off between length of life and quality of life and that a path that includes or focuses on palliative care will result in shorter lifespan, rigorous studies show that palliative care can help people with serious illness live longer. In fact there is no study that shows that palliative care is associated with shorter lifespan. The truth is that studies demonstrate that palliative care helps people achieve a better quality of life, eases pain and depression, and reduces the chance that loved ones will experience depression or complicated grief after the person dies.

Myth: Palliative care is just end-of-life care, so if you are not dying now, it’s not for you.

Truth: It’s always the right time for palliative care.

Many people ask when is the right time for palliative care. The answer is that it’s always the right time for palliative care for someone with a serious illness. Of course, if we always wait for the “right time” for palliative care, then palliative care will come near the end of life and be seen as a marker of things going poorly. Don’t be fooled by this self-fulfilling prophecy. Ask for, demand, palliative care whenever you are diagnosed with a serious illness. Palliative care is also of great help to patients and their loved ones near the end of life. A palliative care team, or hospice, at the end of life can help you be comfortable, dignified, and peaceful at the end. And for times when the end of life is more chaotic than peaceful, as sometimes happens, having an experienced team to help out is even more important.

Myth: Palliative care can show you the right way to die.

Truth: There is no best or right way to approach serious illness and end of life.

There is no one right way to approach the end of life, just as there is no one right way to approach life. Decisions about the kind of care you want when faced with serious illness are very personal and based on many issues including your culture, religion, personal experiences and outlook on life. For all the talk about a good death, we can’t really make death good—it’s just sad and filled with grief and loss. Nothing good about that. But we can do our best to make the end of life peaceful, comfortable and dignified. Thinking about it in advance and facing it head on can make it more likely to be peaceful than chaotic. More important, we should focus on living, and making our lives, even with serious illness as fulfilling, meaningful, and good as possible. Palliative care can help.

My grandmother used to sign my birthday cards with the wish that I should live to one hundred and twenty. Moses lived that long and she wished that for me, too. As she got older, my grandmother changed it just a bit. In Hebrew, she changed just one letter and turned the wish upside down. Instead of writing, “live to one hundred and twenty” she wrote, “live to one hundred like twenty.” Live long and live well. My grandmother knew that a good life was as important as a long one. She would have told you to get palliative care, and she would have been right.

Dispatches of solace and hope: Q&A with Sarah Gray

On Hope and Solace: Sarah Gray
Sarah Gray

In her TEDMED talk, Sarah Gray, director of communications for the American Association of Tissue Banks (AATB), shared her journey to find meaning in her most tragic loss by learning how to donate the organs of her newborn son to advance scientific research. We asked Sarah to tell us more about her outreach work.

TEDMED: Could you share any exciting stories you’ve encountered in your work?

SARAH: On the research front, I’m pleased to share that Eversight, one of the largest consortiums of eye banks in the USA, recently launched a new program called Hope and Healing that is designed to help eye donor families meet the researchers who received their loved one’s tissue.

In a story similar to my own, an especially touching family tale is about Amalya, a baby who died of anencephaly who donated to a variety of studies around the USA. His parents were able to meet some of the researchers who received his donations and learn about the impact of his donation.

TEDMED: In your TEDMED talk, you encouraged the audience to contact you with any stories of their own about tissue donation. With over a million views of your talk, have you connected with any viewers with powerful stories of tissue, organ or marrow donation?

SARAH: Absolutely! I have received emails from amazing people from all over the world, from New Zealand and South Africa to Scotland, Spain and France. Some just wanted to say that they liked the talk, some shared stories of loss, some told me that I helped them see a new perspective, and some asked for practical advice about donation and obtaining research samples. One researcher contacted me to find out where he might be able to access different types of tissue for a study on the genetic causes of certain diseases and I am glad I was able to help him.

I was really touched by every person who reached out, and a few of the emails in particular. Two different people from two different countries told me they had terminal cancer and wanted to know where they might be able to donate their tissue when they pass away so that the study of their tissue might help others. Reading these emails was so moving and I am honored I was able to help them.

Learn more about Sarah’s journey in her powerful memoir, A Life Everlasting: The Extraordinary Story of One Boy’s Gift to Medical Science.