On Tuesday, you’re at the top of your game. You take a meeting with investors — the prospect for continued growth of your business looks good. You then have a great game of tennis at the club, plus a wonderful 72nd birthday dinner with your family. Nothing could be better! As you drift off to sleep that night, you think baruch Hashem, invoking your zayde’s saying for all the good things granted to you in this life.
The next morning, though, you wake up with a pain in your right hip that persists throughout the day. Actually, it worsens. Extra-strength painkillers do nothing to relieve it.
On Thursday, increasingly concerned about the pain, you visit your physician, who examines you extensively, runs some tests and sends you to the hospital for an MRI.
By the end of your week, you receive the news: advanced bone cancer that can be treated to relieve the pain but that cannot be eradicated.
Overcome with grief, shock, anger and other feelings you didn’t know you had, you plunge into a depression. You feel paralyzed, powerless. What do you do now? Where do you turn?
“Serious illness stinks,” writes Dr. Steven Z. Pantilat in his new book, “Life After the Diagnosis.” But there are many things you can do to continue living a rich, meaningful and pain-free life for as much time as you have left.
Pantilat is a professor of medicine at UCSF and the founding director of the UCSF Palliative Care Program. His book is subtitled “Expert Advice on Living Well with Serious Illness for Patients and Caregivers,” and he offers the following advice in an interview:
First, find a good palliative care program. “You can’t Google your way through a serious illness,” Pantilat says, “but you can Google palliative care.”
Most major hospitals in metropolitan areas have palliative care programs, which address the psychological, social, spiritual and physical well-being of patients facing serious, life-limiting illness, as well as the most effective means of relieving their pain.
Many people conflate palliative care with hospice care, Pantilat says, but there’s a big difference. Palliative care kicks in at diagnosis; hospice care is time-limited, generally starting as soon as all treatment options have been exhausted.
Next, figure out what’s important to you — and understand that it may differ from your and your physician’s plan to treat your illness. “Sometimes, we get too close to the intervention rather than the goal,” Pantilat says. By doing so, we sometimes “undermine the goal.”
In other words, Pantilat explains, illness gives us the chance to consider our values. If we have 18 months to live, how do we want to spend our remaining time? Visiting family and friends before we become too weak? Writing a memoir to pass to our children and grandchildren? Listening to our favorite music? Rereading our favorite books?
This is not to suggest, Pantilat stresses, that undergoing aggressive treatments, such as radiation and chemotherapy, should not be part of the goals, but they have to be weighed against overall quality of life, particularly when treatments can make patients weaker and sicker.
[Patients] say, ‘Tell me everything — and tell it to me straight.’
Also, demand that your physician be clear and direct with you. “Almost everyone wants to have information about what’s happening,” Panilat says. “They say, ‘Tell me everything — and tell it to me straight.’”
Patients owe it to themselves to understand the implications of their illness so that they can make the best decisions for themselves and their families, Pantilat says. What’s going to be right for Patient A may not be right for Patient B, even if they have the same condition and prognosis. That’s something physicians need to keep in mind, too.
“Life After the Diagnosis” is interspersed with patient stories, though all names and identifying traits and circumstances have been altered to protect patient privacy.
Pantilat, 54, says the impetus behind the book was the experience of helping a family friend whose parent was gravely ill. It also was borne of personal experience: His own father died suddenly — at age 54 — and the two never had a chance to talk about all of the important things a father and son might share with each other over a lifetime.
The child of Israeli immigrants, Pantilat grew up in New York and the Los Angeles area. He trained as an internist — the palliative care specialty did not exist three decades ago — but quickly became interested in medical ethics and end-of-life issues while treating AIDS patients early in his career. His work, he said, is embedded in the Jewish values of bikur cholim (visiting the sick), tikkun olam (repairing the world) and gemilut chasadim (the giving of lovingkindness).
Receiving bad news about your health is always devastating, of course. “You feel like you are in a plane crashing to the ground,” Pantilat says.
But, he continues, “You are not going to crash and burn. You can land the plane safely. The life after your diagnosis is not the end of your life.”