by Katy Butler
FINDING ALLIES IN PALLIATIVE CARE
Once you understand the general contours of what you’re facing, I recommend you add a palliative care doctor to your team. Many people have never heard of palliative care, or else confuse it with hospice, but don’t let that stop you. (Briefly, hospice is for people likely to die within six months, while palliative care is helpful much earlier in the course of a long illness.) Every dimension of your experience will probably be easier with this extra layer of support.
Palliative care focuses primarily on relieving suffering and improving function, not on curing disease. The word “palliative” has been a recognized part of medicine since at least 1543, when the first English translation of an earlier treatise by the Venetian doctor Giovanni da Vigo appeared, recommending “apalliating” incurable illnesses by “gentle remedies” rather than attacking a disease at its root. It became a distinct medical specialty in the 1970s, when other branches of medicine started to focus almost exclusively on prolonging life. It has become the preeminent medical ally for anyone who wants to live a good life while coping with a debilitating illness.
In some health systems palliative care is called prehospice, supportive care, pain management, symptom management, comfort care, or serious or advanced illness management. No matter what it’s called, you should ask for it: palliative care improves well-being and survival times so significantly that both the American Heart Association and the American Society of Clinical Oncology recommend it as early as possible.
Unlike hospice, which is usually reimbursed by insurance only when people abandon all attempts at cure and are within six months of dying, you can get palliative care while you are still fighting disease and hope to live much longer. Its doctors and nurses will work alongside your cure-oriented specialists. Like physical and occupational therapists, they won’t focus so much on “what’s the matter with you.” Instead, they will ask “what matters to you” and help you achieve it. They are experts at managing fatigue, nausea, anxiety, and breathlessness. They also step in as truth-tellers, counselors, and medical-decision coaches when other doctors feel unequipped to play those roles. They are not afraid to talk frankly about the realities of death and disability, and to help you prepare for them emotionally and practically. And because they work in teams and focus on the needs of the whole person, they often save people from falling through the cracks in fragmented health systems.
Recent research has shown that people who get palliative care have fewer health crises and spend less time in hospitals, and are therefore less often exposed to medical errors and infections. They die in hospitals less frequently, and enroll in hospice earlier. They experience less pain and suffering and they tend to leave their survivors in greater emotional peace. And oddly enough, they often live longer than people who continue with harsh, last-ditch, supposedly life-prolonging treatments.
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Palliative care saved Amy Berman a great deal of unnecessary suffering when she developed excruciating pain in her back, four years after her cancer diagnosis. Cancer cells had migrated from her spine to her lower ribs, inflaming nerve endings. The standard treatment was ten to twenty doses of radiation, administered once a day for two to four weeks. The predicted side effects included exhaustion, hair loss, blistered skin, nerve damage, and a temporarily weakened immune system.
Before proceeding, Amy consulted with a palliative care specialist at Maimonides to weigh her pros, cons, and alternatives. Together they found studies showing that a single carefully focused burst of more intense radiation would work as well as multiple weaker blasts. That’s what Amy chose—after a struggle with her insurance company, which at first didn’t want to pay for the expensive scan necessary to deliver the radiation safely. Her back pain disappeared in one day, saving her pain, lost work time, and hundreds if not thousands of dollars in insurance co-pays.
REFLECTING ON WHAT GIVES YOUR LIFE MEANING
A palliative care doctor helped Jerry Romano, a textbook editor in Menlo Park, California, who had to retire in his sixties after a heart attack and open-heart surgery. By the time he turned seventy, his heart problems had become so bad that his cardiologist arranged for an implanted defibrillator. Sometimes called “an emergency room in your chest,” defibrillators deliver massive and painful shocks to the heart to “reboot” it if it starts beating so erratically that life is threatened. (Less intrusive pacemakers, by contrast, keep hearts beating at a healthy, regular rhythm by delivering consistent, tiny electric pulses that are imperceptible to the patient.) The device did nothing for Jerry’s symptoms, chest pain and breathlessness, which kept him from doing what gave his life meaning—making beautiful painted wooden airplanes and toys for children in his backyard woodshop. Tired of a life that had lost its savor, he asked to have his defibrillator deactivated. After this was done, a palliative care doctor put him on oxygen at night (relieving his breathlessness) and adjusted his medications (easing his chest pain). He returned to his woodshop to build toys, and once again he felt life was worth living.
If your specialist balks and says it’s “too early” for a referral to palliative care (unfortunately this is still a common response) please note that in some health systems, you can call the palliative care department directly without a doctor’s referral. Some hospices also provide palliative care, and they can often help you find practitioners who provide it, as can the website getpalliativecare.org.
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If you can’t find palliative care, do what its doctors would do: make sure you articulate what makes your life worth living, and see that the treatment you get serves those goals. “Do you like to go to the opera?” asks Dawn Gross, MD, a palliative care specialist at the University of California medical school in San Francisco. “Do you want to be able to garden, or sing, or play the piano, do the crossword puzzle, ski, go shopping, or be able to eat or talk to your grandkids?” Know what gives you joy, and let your doctors know, at every visit, whether you can still do it.
“A doctor will not be thinking in terms of whether you can garden,” Gross said. “They’ll just be thinking, ‘I’m going to do whatever I can to slow this down and come as close to curing it as I can.’ If you don’t have a really good footing, you will get sucked into a powerful current within medicine that assumes that you want to try to live forever, no matter what.”
At each visit, remind your doctor (and perhaps yourself) what matters to you. “When a patient tells me that they were able to paint or make the bed, that’s incredibly helpful to me,” says Anthony Back, a leading oncologist at the University of Washington who helped found a program called Vitaltalk, which trains oncologists in how to hold meaningful conversations with patients. “It’s very different from reporting your symptoms on a ten-point scale.”
Finally, address your fears. Ask your doctor:
• What is it like to die of my disease, and how can medicine ease my symptoms?
• Will you still be my doctor if I decide to opt for strictly palliative care?
• When do patients with my disease benefit most from enrolling in hospice?
STAYING IN CHARGE
Don’t let the business of medicine eclipse the business of living. Spend your limited energy and time on things that matter to you. To that end, feel free to turn down tests, treatments, and doctor’s visits that don’t serve your purposes. Dr. Back suggests asking your doctor, “How is this test going to change what we’re doing—or are we just doing it for more information? If that’s the case, I’d just as soon skip it.”
You have no obligation to create a voluminous medical history or to monitor a condition that can’t be cured. Shrinking a tumor or stopping it from growing sounds good. But oddly enough, tumor shrinkage in and of itself doesn’t predict an extended life span or improved day-to-day well-being. Between 2004 and 2014, about 74 percent of cancer drugs approved by the FDA as “effective” because they arrested tumor growth did not improve patient’s survival time by a single day. (Ask, instead, if
the treatment is “clinically effective,” meaning that it actually benefits patients.) Resist focusing on repeated scans, and check in with your own body. How well you feel, and how much or little you can do, are more meaningful measures of your health and better predictors of what your future holds.
Don’t, by the way, place much stock in media hype about breakthroughs around the corner. They’ve been appearing regularly for half a century. Take for instance, recent advances in immunotherapy for cancer. A small group of people get an extended plateau, but immunotherapy is not, so far, a cure. What is rarely discussed is that after a “honeymoon period” when tumors melt away, the cancer usually returns. Overall time gained is often limited to a few months, and the treatment’s suppression of the immune system produces terrible side effects that can be health-destroying and even life-ending.
Some treatments forestall death for years with relatively gentle side effects. Others delay death without restoring health. Still others are triple losers: they damage the quality of remaining life, they reduce its length, and they cost a fortune in co-pays. This medical labyrinth is confusing even to people, like Amy Berman, with substantial medical training.
As a guide to this confusing environment, keep in mind the law of diminishing returns. If your disease is terminal, each successive round of treatment is likely to produce fewer gains, and to work for a shorter time, than the one before it. This is especially true if you are growing weaker. In lung cancer, average survival time is four months after a third “line,” or round of treatment. The fourth line produces no better results than no treatment at all and, in the words of oncologist and palliative care doctor Thomas Smith of Johns Hopkins, is “ineffective, toxic, and delays hospice use.”
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Therefore, keep making sure you understand how your life, functioning, and well-being will be affected by a demanding treatment, be it repeated chemotherapy, an external heart pump, or dialysis. Many of these are called “halfway technologies” because they ward off death without restoring health. They often place massive burdens on caregivers and substantially damage the quality of remaining life. Just because a doctor offers something, and insurance will pay for it, doesn’t make it a good idea. Sometimes doctors are secretly relieved when patients reject a harrowing treatment with minimal payoffs that they felt duty bound to offer. You are not required, legally or morally, to agree to any procedure you don’t want. Most people believe that there are fates worse than death, and it’s up to you to decide where you draw that line.
As you proceed, keep making sure that you and your doctor remain on the same page. Each time a new treatment is proposed, ask your doctor what he or she hopes to accomplish. As a reminder, the five traditional duties of medicine are: to prevent disease; to restore functioning; to prolong life; to relieve suffering; and to attend the dying. Sometimes these goals are in sync; toward the end of life they can be at cross-purposes. Which goal is your doctor trying to fulfill? Ask: “Do you hope this will give me more time? Cure my disease, or slow it down? Improve how I feel or function day to day?” Then think through whether these priorities match your own, and whether the trade-offs are worthwhile to you.
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It may help you retain your agency and your moral authority if you understand that financial incentives, hidden from your view, promote overtreatment. The pharmaceutical industry alone has more than three thousand lobbyists in Washington who shape health policy to their clients’ advantages. Few people with cancer know, for instance, that oncologists get more than half of their revenue from markups (in 2017, of 4.3 percent) that they are allowed to add to the price of the chemotherapy drugs they prescribe and administer. This funding system, known as “buy and bill,” creates an unfortunate incentive to prescribe the most expensive chemo and to infuse it long after it stops being helpful. This peculiar system underpays oncologists for making time for difficult conversations, and puts them all in a terrible bind.
So stay in the driver’s seat. Make the best decisions you can in light of uncertainty and your gut sense of what you can tolerate. “I’ve been in many support groups through the years,” said Merijane Block, who lived for two decades with a slow-moving metastatic breast cancer that eventually spread to her spine. “I’ve seen women who did everything . . . and they died. I’ve known women who couldn’t bring themselves to do everything . . . and they died. It’s one big crapshoot.”
Merijane underwent radiation, surgeries, and drug treatments. But for twenty years, she refused chemotherapies that would have been infused directly into her bloodstream and damaged noncancerous tissues in her skin, hair, and bone marrow. “I just couldn’t take a medicine that destroys healthy cells and causes so much devastation,” she said. “I had a very strong feeling it would kill either my body or my soul.”
Over time her cancer, in tandem with the radiation she was given to slow its progress, left Merijane in chronic pain. She used a walker and then a wheelchair. “The days of the somewhat-easier drugs appear to be over for me,” she said. Fearing the prospect of a painful, drawn-out death, she met with a palliative care doctor at her medical center.
He coached her on how to have a frank talk with her oncologist, a “brilliant clinician” with whom Merijane had bonded, but found intimidating. At their next meeting, Merijane put her hand on top of her oncologist’s hand and said to her gently, “The time is going to come when I’m going to shift to strictly palliative care. Will you still be able to be my doctor?” The oncologist’s eyes filled with tears. She said, “I’ll be with you till the end,” and both women began crying.
When a disease continues to advance, some people pin their hopes on becoming an experimental subject in a clinical trial of an untested drug. I suggest that before you enter a “stage one clinical trial,” you think hard about your motives. Some people find meaning in contributing to scientific knowledge before they die, and that is an achievable goal. But being a guinea pig in a clinical trial is a gamble with miniscule odds of improving your health or extending your life.
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Consider the statistics. The FDA never approves 95 percent of untested cancer drugs that begin clinical trials, because they prove to be either dangerous, or ineffective, or both. According to a groundbreaking study in the New England Journal of Medicine, only 5 percent of volunteer subjects gained more time. Of those who did, half (2.5 percent of the total) lived less than an additional six months, and there are no good studies assessing the quality of that time. Some participants suffer side effects so severe that they drop out of the study or die sooner, with more suffering, than they would have otherwise. This dismal record recently led the medical ethicist Jonathan Kimmelman to write, in the Journal of Clinical Oncology, that it was time to deflate “the unscrupulous marketing of unproven interventions to desperate patients.”
So think through what a clinical trial asks of you. When time is short, do you want to spend it at clinic appointments? “Energy is your most precious commodity,” says oncologist Anthony Back. “Think about where you want to spend it. People think of clinical trials as risk-free lottery tickets, but they have their price.”
THINKING CREATIVELY
For some people, throwing “everything but the kitchen sink” at a fatal illness has become a medical rite of passage. In the words of the noted cancer researcher and physician Siddhartha Mukherjee, author of The Emperor of All Maladies, this approach can lead to “a scorched-earth operation with many long-term consequences.” There’s an unspoken belief, widely held among patients and doctors, that the more tests, procedures, specialists, treatments, and hospital visits you undergo, the longer and better you will live. But it can be just the opposite. For both the fragile and the relatively robust in their last months of living with cancer, new research is strongly suggesting that more chemotherapy frequently shortens life and contributes to a worse quality of death.
Much scientific research investigates treatments that attack diseases head-on. Less research explores how the bod
y fights off disease. Cancerous tumors, Mukherjee notes, shed thousands of cells into the bloodstream daily, but only in some people do those cells develop into metastases. I encourage you to explore the many low-cost, low-risk ways you can strengthen your immune system, your first line of defense. They might improve how you feel and function today and are unlikely to do you harm. I’m not suggesting that you substitute carrot juice for a lumpectomy if you have a treatable breast cancer, but simply that you honor the capacity of your body, and your mind, to contribute to your healing.
Studies observing large groups of patients suggest that people with life-limiting illnesses who exercise, adopt a healthy diet, and get emotional support—as a complement, not a substitute, for conventional medicine—tend to live longer. A protein-sparing vegan diet can slow kidney failure. People with high bloodstream levels of vitamin D tend to do better after treatment for colon cancer. So do those adopting a so-called non-Western diet like the Mediterranean Diet, substituting vegetables, whole grains, olive oil, fish, and fruit for red meat, sugar, white bread, and other heavily processed “food products.” Acupuncture can reduce all sorts of pain. Stick with complementary remedies that are gentle, unlikely to hurt you, and may prove helpful. Most will not be reimbursed by Medicare or other insurance.