A pioneering palliative-care expert shares his insights on the power of finding peace and possibility at the end of life.
In 1978 Ira Byock, MD, was a resident striving to be a top-notch generalist who could deliver babies, care for children with strep throat, and set fractures for elderly folks suffering from osteoporosis. “I wanted to care for people in their flourishing and in their decline,” he recalls.
Byock’s interest in palliative care began almost by accident. “It chose me,” he admits. As a resident physician rotating within the wards and emergency department of the county hospital, he saw people falling through the cracks of the healthcare system. One woman who had inoperable liver cancer, for example, didn’t know how sick she was or even who her doctor was.
To address the needs of these patients, the young resident cofounded one of the nation’s earliest hospice programs based in a public hospital — a team approach involving doctors, nurses, chaplains, and social workers who care for people in the last days of their lives and support their families.
The terminally ill patients he treated taught him an important lesson he hadn’t learned in medical school. When asked how they were doing, some responded by saying, “I’m well, doctor. How are you?” This completely changed his understanding of the end-of-life experience. “I realized that many people have the capacity to be well within themselves during the time they are dying.”
Byock, now 66, has been teaching fellow doctors about the benefits of whole-person palliative care ever since. He is founder and chief medical officer of the Institute for Human Caring at Providence St. Joseph Health & Services, based in Torrance, Calif. Byock is also active emeritus professor of medicine and community and family medicine at the Geisel School of Medicine at Dartmouth College.
He’s served as president of the American Academy of Hospice and Palliative Medicine and has authored multiple books, including Dying Well: Peace and Possibilities at the End of Life, which was recently rereleased to celebrate its 20th year in print.
Byock shares the changes he’s seen in palliative-care medicine, his hopes for the future, and some sage wisdom on living and dying well.
Q&A With Ira Byock
Experience Life | Would you describe the landscape of palliative medicine at the time you wrote Dying Well?
Ira Byock | Back in the 1980s and ’90s, it was unusual for doctors to be involved with dying people; that was the realm of nurses and chaplains. That never made sense to me, because, if you think about it, people who are dying are the sickest people in our healthcare system. They deserve the attention of physicians who have the highest level of training and command of the science and technology of therapeutics. The treatment goals are different, but they are people who need the best care we can possibly give them.
EL | What does that landscape look like today?
IB | More and more doctors are understanding the benefits of this kind of care. It’s represented in the membership numbers of the American Academy of Hospice and Palliative Medicine — it now has nearly 6,000 members.
The culture of medicine has also matured to recognize palliative medicine as a full specialty. Some universities now have endowed chairs of palliative medicine, and there are multiple journals specifically devoted to clinical practice and research of the specialty.
EL | What’s the best way to deal with a terminal illness — whether it’s you or a loved one who has been diagnosed?
IB | If you or someone you love is diagnosed with something serious, get the best medical treatment you can. Get multiple opinions, particularly if you have a condition that is unusual. If you’re living in a reasonably large community, go to your local hospital, but also get a second opinion at an academic medical center.
If things progress, get more than two opinions and make sure one is with a palliative-care team. This is an important way to ensure you’re not just getting expert attention for your diagnosis, but also your symptoms — pain, breathing, appetite, sleeping, and energy level — and your priorities, what matters most to you. That includes identifying opportunities that still exist that may be meaningful for you — ticking off that trip to the Grand Canyon or writing a letter to a beloved grandchild who you aren’t likely to see graduate from high school — as well as addressing your emotional, spiritual, social, and interpersonal concerns. A palliative-care team can shine a light on this dark, scary part of life that we avoid thinking about for most of our adult lives.
When someone you love is ill or dying and you don’t know what to say, I suggest starting with what I call the four things, which are not things at all. They’re just four sentences, 11 words: Please forgive me. I forgive you. Thank you. I love you.
These four sentences encapsulate what people have told me are left unsaid between them and someone they loved who has died.
“Please forgive me” and “I forgive you” can get you unstuck. Let’s face it: There hasn’t been a perfect relationship in the history of our species. Even the closest, most loving relationships usually have some history of hurt feelings, misunderstandings, and sometimes real transgressions.
“Thank you” and “I love you” are often stating the obvious, but, boy, are these ever of value to say. These words can be a gift that keeps on giving in people’s minds and memories.
It happened in my own life. When I was completing my second book, The Four Things That Matter Most, my mother died suddenly. I miss her to this day but take real comfort in knowing that there was nothing critically important left unsaid between us. She had read the book galleys, and we’d had a long talk. There was stuff I needed to ask her forgiveness for and that I wanted to forgive her for. I wanted and needed to express my deep gratitude and my love. I’m glad I did. My sadness would have been complicated by the would-haves, could-haves, and what-ifs that aren’t there now.
EL | What do you see in the future of palliative care?
IB | I hope we begin to understand the surprising potential for human well-being even when we are dying. Illness is personal; it’s only partly medical. Too few people know or even allow themselves to think about the fact that, while dying is hard, unwanted, often tragic, and always sad, it’s not only those things. In addressing the problems, we shouldn’t ignore opportunities for a person’s and his or her family’s well-being.
I often ask seriously ill people, “What matters most to you now?” And the answers always include the names of people they love. Regardless of what disease they have, their age, color of their skin, ethnicity, or religion, it turns out, first and foremost, people matter to one another.
We need to ensure that patients express their worries about how their children and grandchildren will fare, that they’ve expressed their love to the people who matter, and that they’re engaged in a sense of celebration.
For someone who is seriously ill, celebrating life and relationships is almost a defiant act. Even death can’t take from us who we are and have been for one another.