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A better kind of care

At Mass. General, and a growing list of hospitals nationwide, teams trained in palliative medicine are changing the way patients and their families live with serious illness – and cope with its toughest decisions.

BODY AND MIND Paul White, shown here at a chemotherapy session with his daughter Laurie Alexander, gets help with pain management and treatment decisions from MGH’s palliative care team. BODY AND MIND Paul White, shown here at a chemotherapy session with his daughter Laurie Alexander, gets help with pain management and treatment decisions from MGH’s palliative care team. (Essdras M Suarez/Globe Staff)
By Kathleen Burge
July 24, 2011

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From the street, this silvery monument of glass shines with the limitless promise of modern medicine, gleaming even on a sunless day in late winter. But for a man sitting on a colorless chair in a colorless room on the seventh floor of the Massachusetts General Hospital building, it feels as if the world is shrinking. It has been eight years since Paul White discovered he had kidney cancer, and since then, the disease has taken up permanent residence in his body, moving from his kidney to his spine, hip, left arm, lungs, and skull. As his disease has advanced, there’s always been another new drug that has managed to slow down the cancer, even when a cure became impossible.

Now, however, White has started coughing up blood, a potentially fatal side effect of the most recent chemotherapy. White didn’t tell anyone about the blood at first, but when he did, his oncologist stopped the chemo. On this drab afternoon in March, White has driven with his two adult daughters into Boston to see another of his caregivers, Dr. Vicki Jackson, director of MGH’s palliative care unit. Her job is to help him feel as well as possible, even as he fights his disease, and she asks about his pain, his breathing, his medicine. But she also guides him through the complicated, emotional terrain of advanced cancer – an area not often emphasized in traditional medicine – and the possibility that no other chemotherapy could help him.

“If it isn’t an option for you, how do you think that would be for you?” Jackson asks him.

Jackson has rolled her black metal chair toward White, who, at 61, has a light gray goatee and thinning hair still stubbornly dark. His daughters, Laurie Alexander and Wendy Willis, sit beside him taking notes about his symptoms and medications. In the tiny, windowless room, Jackson’s knees are nearly touching White’s.

“Well, I’d have to think about that,” White says slowly. “I know what that means. I think it means that I’m running blind again.”

“You mean in terms of not having medicine to treat this cancer?” Jackson asks.

“Yeah. I’ve done so well over the years with the types of chemo they’ve had,” White says. “I was always hopeful that while I was on one, they’d come up with another one.”

“I know,” Jackson says sympathetically. “I know.”

This is a conversation White has tried to avoid: What happens when he runs out of treatment options? He doesn’t talk directly about death, only a vague future “when things aren’t so good for me.” In February, as he headed to his weekly chemo session, he said: “I know what’s in store for me. Why think about it? It only upsets me.” His reluctance to discuss death, though its presence hovers over many conversations, is hardly rare. In fact, he is following the lead of traditional medicine, where oncologists are notoriously optimistic about predicting how long patients will live and equally resistant to telling patients that they are dying.

Never before has medicine been so able to fight deadly diseases like cancer and extend our lives. Medical and technological progress has accelerated tremendously; in one spectacular advance, new targeted cancer drugs fight specific genetic mutations. And yet in hospitals and medical centers around the country, personal and wrenching conversations about whether patients should always take advantage of these triumphs of modern medicine have often gone unspoken. Should White accept every possible medical treatment for his disease? What if this new chemo robs him of enjoying his final weeks and months? Even worse, what if it hastens his death? And yet, is it right to stop fighting? If he decides to decline this chemo, will his family accept his decision?

These are questions that make many doctors queasy. Until recently, they’ve gotten remarkably little instruction on how to discuss death with their patients. But now, doctors and other caregivers trained in an expanding field of medicine, palliative care, want to change the way we live with serious illness – and ultimately, the way we die.

White has had reason for hope, even as he takes round-the-clock methadone – a drug normally used to wean heroin users from their addiction – to battle the pain of cancer attacking his bones, even as his tumor-riddled spine hunches over the black cane that helps him walk. He is an outlier among patients with metastasized kidney cancer: The median life span is about two years, and he has already lived nearly seven years since tests showed his own cancer had traveled to his spine. In that time, he has seen the number of approved chemotherapies for his disease increase from zero to six. He has taken part in clinical trials and felt deeply confident in his oncologist’s care. And yet in Jackson’s meetings with White, she gently leads him to contemplate how he would want to live his final years or months. As painful as the conversations are, White feels comforted by her help navigating these complex emotions, for him and, especially, for his children, now and in the difficult days to come.

About two weeks after his meeting with Jackson, White’s mind goes to that dark place on a long, quiet car ride to the Holliston home he shares with his wife, after a meeting with his MGH oncologist, Dr. M. Dror Michaelson. The chest scans showed White’s lung tumors and lymph nodes were larger, Michaelson had said. The doctor had one more possible chemotherapy drug for White to try, but Michaelson made clear his concerns that the medicine, Torisel, might make White worse.

“There wasn’t a lot of good stuff to talk about with the girls,” White said later. “And I caught myself saying a couple times, ‘Well, I could throw in the towel.’ ”

***

Palliative care, though still relatively unknown, is a growth industry. In 2000, just 658 of 2,489 US hospitals had palliative care programs. Eleven years later, that number has jumped to more than 1,500 hospitals, including 68 percent of those with more than 50 beds, according to the Center to Advance Palliative Care. MGH’s program, one of the oldest and most sophisticated in the country, began 15 years ago and has now expanded to a team of 10 doctors, five nurse practitioners, and one social worker. The staff works closely with the oncology chaplain, psychiatrists, the oncology pharmacist, and other caregivers. MGH oncologists have been early adopters in referring their patients to the palliative care team. But the palliative care center’s patients also include those with other diseases of the heart, liver, kidney, and lung, as well as the neurological system, both in the hospital and as outpatients.

People often confuse palliative care with hospice, and though it grew out of that movement of the 1970s, the two fields are very different. Medicare coverage of hospice has traditionally been limited to patients who have stopped seeking a cure for their disease and have six months or less to live. Palliative care is designed to help anyone with a serious disease live as well as he or she can by addressing not only his or her physical, emotional, and spiritual needs, but also those of the families. Palliative care clinicians have become experts in controlling pain. They help patients think about how they want to live and how treatments might best help them achieve that.

Traditionally, Jackson says, the philosophy was “Anything we can do, we should do. And now we’re stepping back and saying, ‘If we can do it, does it make sense to do it? Is it what the patient wants?’ ” Creating that kind of rapport with struggling families takes time, one reason why palliative care programs are pushing to see patients earlier in their illness.

“We really over the years have grown from being an end-of-life service to a true palliative care service where we’re seeing patients really from the start of life-threatening illness, and we can follow them as long as a few years,” says Dr. Eva Chittenden, associate director of the MGH palliative care unit. “And that just expands so much how we can help and what we can do with these families.”

Palliative care became politically contentious when opponents to President Obama’s health care overhaul proposal – which at one point included Medicare funding for voluntary discussions about end-of-life care between patients and clinicians – suggested that “death panels” would decree who was worthy of health care and who should be allowed to die. Support for palliative care’s benefits came in the form of an August 2010 MGH study, coauthored by Jackson, that found that patients with metastatic lung cancer who received early palliative care along with standard oncology care lived almost three months longer than those who did not despite getting less chemotherapy at the very end of their lives.

The patients who received early palliative care had a 50 percent lower rate of depression compared with the group that did not, a statistic Jackson aims at critics who argue that introducing palliative care will deprive patients of hope. Hope is deeply powerful, and no doctor ever wants to destroy it. For this reason, Michaelson, White’s oncologist, never tells patients when they may have just a few months to live. “If you tell somebody that, you’re taking away hope,” Michaelson says. “And even if someone is pressing you on that point, I think a big part of that same person doesn’t actually want to know the answer. So I’ll say, I know you think you want to know this, but first of all, I don’t know, and second of all, you don’t want to know.” Doctors can only estimate individual life spans based on statistics, and so they can never be entirely sure, he adds.

Palliative care clinicians, too, believe in the power of hope, but they also say that patients approaching the end of their lives can live best by recognizing that their time may be limited. Doctors like Jackson encourage patients who might become terminal to think along two tracks: one filled with hope that the medicine will work and all will turn out well, the other devoted to what they would do if things don’t.

***

Steve Pritchard was 40, the father of two young daughters, when he started having odd sensations in his foot. Pritchard, a software developer who lived in Andover with his family, had been running a lot in the fall of 2004 and thought an injury might be causing the numbness and tingling. But an MRI showed a large mass near his ankle, and he was diagnosed with a rare cancer of the cartilage called synovial cell sarcoma. He underwent chemotherapy and radiation, then surgery to remove the tumor, and more chemotherapy to kill any remaining cancer. But a year and a half after his diagnosis, his doctor discovered a nodule in his lung, and then six months later, more nodules.

By 2008, his wife, Buffy, began to fear that her husband was going to die. Once, during a visit with Steve’s oncologist, she asked whether the statistic she had read was true, that once synovial cell sarcoma has spread to the bones, a patient’s chance of survival dwindles to 10 percent. Yes, the doctor said, that was correct. But Buffy, a pediatrician, remembers that Steve left the room, saying, “I don’t want to have this conversation.” The emotional chasm was painful for Buffy, who felt as if she and her husband were struggling to comfort each other during the crisis.

“I think for him as a patient, so desperate to survive the cancer, he was more feeling like, ‘They’re not telling me I’m going to die, so I don’t think I’m going to,’ ” she says. “It was scary for him to join me where I was. And it was frustrating for me that he couldn’t see it.”

As Steve’s cancer pain increased, his oncologist recommended seeing a palliative care doctor, who prescribed more powerful painkillers. Then Eva Chittenden began seeing Steve and Buffy, focusing on the emotional difficulties of living with cancer. During one visit, when Steve wasn’t in the room, Chittenden asked Buffy what was on her mind.

“I said, ‘Steve’s dying, and he can’t talk about it and he can’t accept it,’ ” Buffy recalls. “ ‘And I don’t know how to help him through it or how

to talk about it.’ And so she was able to say, ‘OK, we’re going to work on this.’ ” Chittenden began to ask Steve how he’d like to live if his cancer couldn’t be cured. “I think it was the right approach for him, because I think he could tolerate it,” Buffy says. “There was still the hope and the idea that maybe things could be OK. But it addressed both of our needs, because I was so desperate for more discussion about what if it didn’t work out.”

When Steve was hospitalized and grew sicker, Chittenden came to his bedside and suggested it might be time for him to focus on his relationships, rather than a cure for his cancer. As his cancer spread and Buffy worried she could no longer take proper care of him, Chittenden talked to Steve about moving into a hospice house. She told him that he would receive better care and pain control and that his family wouldn’t worry about him as much.

“She said, ‘It’s the greatest gift you can give your family,’ ” Buffy recalls. “So I think raising it like that for Steve, he was like, ‘OK, I want to do that.’ ”

Steve died at the Merrimack Valley Hospice House in Haverhill in May 2010. “I feel like the ending of his disease was much better than the middle had been,” says Buffy. “As a couple, we could finally connect about the same outcome and I think be authentically supportive of each other. . . .

It’s excruciating to see your spouse have their life extinguished so prematurely. But the flip side was like how amazing it could be in this environment, where you’re so nurtured and cared for in such a meaningful and significant way. I feel like, for me, too, it just made all the difference.”

***

On an afternoon in late April, as rain drips from the bent heads of daffodils outside MGH’s Yawkey Center for Outpatient Care, White and his daughters meet again with Jackson. He has decided to try the new chemo and has started getting weekly injections, with few side effects so far. But Michaelson’s concerns about the medicine still worry White. He has spent the last few weeks wondering whether the doctor was subtly suggesting that he not go forward.

“As long as you’re able to function the way you have been functioning on the chemotherapy, then I think it makes a whole lot of sense,” Jackson says to White. “If, in fact, it’s making you feel so crummy that you’re not doing what you want to do, my worry – and we don’t have great data on this – is that it doesn’t help, it hurts.”

Jackson has talked often with White about his goals, including a big one: organizing a first-ever family reunion of 60 or 70 relatives this summer in Plymouth. He bought a cottage on a lake in Westford about two years ago and has been teaching his five granddaughters, ages 8 to 11, to fish. Although he has danced close to the idea of stopping chemo, he has decided he’s not there yet.

“I think what’s really important,” Jackson says, “is you don’t get yourself into a mind-set of it’s all or nothing: I’m either on this and I’m fighting, or I’m not on it and I’m giving up.” Right now, chemo is helping White do the things he wants to do, but if that changes, she tells him, stopping chemo may be the best way to live the way he wants.

“But I bet if I had said to Dr. Michaelson that day, ‘All right, we’re going to go see how I do without any chemo,’ you guys would have been. . .”

As he looks at his two daughters, his voice trails off.

There is silence, and then Willis says, “It was whatever you wanted.”

“Yeah, you say that now,” White retorts, and the room dissolves in laughter.

“How would it sit with you if your dad decided, ‘You know what, I don’t want to do more chemotherapy. I want to keep fighting and live as long as I can, but chemotherapy just feels like it’s making me worse and I’m not sure it’s helping?’ ’’ Jackson asks them. “How would that feel? Because that’s a tough conversation.”

Neither woman answers the question directly. Alexander points out that another of White’s caregivers at MGH noted that he has always responded well to chemo. “And you look good, you’re not feeble,” she says to her father.

Jackson asks about the date of the family reunion and writes it down. She and White talk about his plans to shut down the engineering and manufacturing business he has owned for more than 30 years.

“There is no way that this is easy,” Jackson says. “The thing that I know is you’ve had a really loving, connected support system, and that’s a real gift. . . . And you can’t get rid of us. We’re going to be here with you as you try to navigate this time.”

Later that afternoon, White sits in the hospital’s Healing Garden, a glass room filled with live plants, healthy and green. He muses that maybe this new chemo will extend his life just enough so that modern medicine, once again, can come up with the next treatment. “Maybe,” he says, looking out over the city from eight stories up, “there is another one coming down the line.”

Kathleen Burge is a Globe reporter. E-mail her at kburge@globe.com.

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