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Palliative Care—A Surprising New Specialty
All the passages below are taken from the book “The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life” By: MD, Ira Byock. It was published in 2012.
“Of course I will talk with her, Dr. Byock. And you know what I am going to tell her? I’ll tell her you people gave me my Mickey back!” It was mid-January 2007. I called Sandy Zimble to ask if she would be willing to talk with a journalist about the palliative care and hospice that she and her husband, Mickey, experienced.
Earlier in the day, Reed Abelson, a health reporter for the New York Times, had interviewed me for a story she was writing about the growth of specialized palliative care teams in leading American hospitals. Hospital-based palliative care was still quite new. Palliative care had grown out of hospice care in the United States and the medical component, palliative medicine, had formally earned status as a subspecialty in September 2006. Reed had asked how our program receives referrals, how receptive other doctors are to the palliative care team being involved, and whether willingness to consult us varies among specialties. I filled her in on the ways our team was becoming increasingly integrated within expanded multispecialty health care teams treating people with serious cancers, heart disease, and liver disease, as well as people with multisystem organ failure in the ICUs.
About twenty minutes into our conversation, Reed abruptly changed the subject.
”Did you read Art Buchwald’s book?” she asked. “If so, what did you think of it?”
Art Buchwald had recently died at his son’s home in Washington, D. C. Late in 2006, the celebrated humorist and columnist for publications such as the Paris Review, Herald Tribune, Washington Post, and Newsweek had published Too Soon to Say Goodbye, a memoir of his life after becoming a patient in a hospice facility the previous February. Having been a fan of his columns and books over the years, I picked up a copy shortly after the book came out and enjoyed it thoroughly. Typical of Buchwald, his book was insightful, self-deprecating, and funny.
In Too Soon to Say Goodbye, Buchwald writes about how he came to be admitted to a hospice facility in the Washington, D.C., area. His kidneys had shut down, but he didn’t want dialysis. He had advanced peripheral vascular disease— and was very likely facing the amputation of one leg. He didn’t want that either. He checked in to the hospice fully expecting that he was dying, but instead, his kidneys started working enough to keep him alive. He recounts visits he received from dignitaries and literati from around the world during the five months he spent in the hospice residence. Even in his dying he didn’t take himself too seriously. He dreams about a big funeral and conspires to get an obituary in the New York Times.
Buchwald thrived in the hospice residence and was eventually discharged in June 2006. He spent the summer and fall at his home on Martha’s Vineyard where he wrote Too Soon to Say Goodbye, all the while continuing to visit with family and friends, inevitably saying his own good-byes. In his book and during a number of interviews he gave while at the hospice facility and in subsequent months, Buchwald credited the care he received for giving him the chance to get better and live longer.
Reed Abelson asked me how often people live longer than expected with hospice care. At the time, I didn’t have statistics I could report to her. However, I told her that in my experience it was fairly common.
“After all,” I asserted, “although we work in hospice and palliative care, we are doctors and nurses. We are not specialists in dying as much as specialists in taking care of people who are seriously ill and may die. In taking good care of people with advanced diseases— making sure they are physically comfortable, eating and drinking, ‘pooping and peeing,’ sleeping and getting around as well as possible— it is not all that surprising that they live a bit longer. Occasionally, some of our patients, such as Art Buchwald, live quite a bit longer.”
For instance, I explained, we help a lot of people with advanced cancer to tolerate treatments that are effective against their tumors but have difficult side effects. In alleviating their symptoms and optimizing their ability to eat and drink, be active and rest, people with cancer are able to stay in the fight longer. If a time comes when chemotherapy and radiation prove more toxic than therapeutic, we can still help people live as well and as long as possible. Patients with late-stage cancers commonly find that when they are finally free of the side effects of treatment, they feel better and stronger. In living with, rather than relentlessly fighting their cancer, they ultimately live longer.
Reed was intrigued. “I can see that,” she said and then asked, “Can I talk to one of those patients or their families?”
“Yes, I think so,” I said. “Let me make a phone call or two and I’ll get back to you.”
I gave the matter some thought and then called the Zimbles.
I had met Sandy and Mickey Zimble in June 2006 (about the time Buchwald was headed to Martha’s Vineyard). Mickey had been admitted to the inpatient cancer unit at Dartmouth-Hitchcock Medical Center four days earlier because of severe abdominal pain and profound weakness. His oncologist, Dr. Ernstoff, asked our team to help with his pain and assist him and his wife in coping with the regrettable likelihood that he was dying.
Mickey managed to be friendly, but it was clear that he had no energy and little patience for conversation. He answered direct questions when he could.
“Where does it hurt?”
“Here,” pointing to his right side.
“How many times did you move your bowels yesterday?”
“Two, I think.”
But he often shrugged or said “I don’t know,” or looked to his wife, Sandy, to answer. And she did, often speaking for them both. For the first couple of days I knew them, Mickey mostly moaned as waves of abdominal cramps rumbled and, at times, roared within him.
He was no stranger to cancer. Mickey had had prostate cancer since 1995 and was initially treated with radiation and hormone therapy. He developed breast cancer in 1999 and had a mastectomy with negative lymph nodes, meaning there was no evidence the cancer had then spread. And he had a small, early-stage melanoma removed from his upper back in 2005. In early 2006 on the basis of a rising PSA, which indicated a likely recurrence of prostate cancer, he underwent treatment with a combination of anticancer drugs. Now, however, he was admitted with newly discovered liver tumors. This is not a usual pattern of prostate cancer. Indeed, biopsies of his liver lesions showed a high-grade neuroendocrine tumor— yet another cancer, which had possibly arisen from a biological transformation of his prostate cancer.
It was unlikely that he would dodge the bullet this time. His liver was swollen and tender to the touch. His right lower abdomen hurt worse, though there was nothing felt on physical examination or seen in that region on CT scans. With medication for pain, Mickey was reasonably comfortable, except for a few times an hour when he doubled over in paroxysms of intestinal spasm, which lasted two to three minutes.
The oncology team had started a low dose of intravenous morphine by PCA— patient-controlled analgesia— which gave him a button to push to administer an extra, metered dose of morphine when he needed it. The morphine worked but made him sleepy and mildly confused. He was also anxious, especially at night, which made it difficult for him to sleep. The lorazepam (Ativan) that the team had prescribed made him sleepy, at least for an hour or two, but left him more confused during the night and next day, which heightened his anxiety. The best thing for his nocturnal nerves was having Sandy stay with him overnight in a recliner in his hospital room.
On one of my visits to his room, I noticed a family photo album that Sandy had brought to the hospital. With her permission, I flipped through it and saw photos of Mickey in 1953, a young man of twenty-two at Cushing Academy. Handsome with thick, dark hair, neatly combed in a wave, and an intelligent, winning smile, he was preppy as could be in a crisply pressed shirt and blazer. Through the chronology of images of his college years, their early relationship, and into midlife, Mickey remained dashingly attractive. He became a self-made success in the scrap metal business, and he and Sandy raised a family. And he was dashing still as his hair turned silver and he retired to play golf and enjoy his children and grandchildren. But after surviving three bouts of cancer, and struggling against a fourth, Mickey was a shadow of his former self.
Our team got busy on several fronts, yet our contributions to Mickey’s care were prosaic. There was nothing particularly dramatic to do— no diagnostic coup or dramatic procedure to perform or treatment to start. Palliative care for Mickey was merely mundane meticulous medicine.
We were interested in the details of his pain— how often it came, whether it was crampy or sharp, and whether he also felt an urge to defecate when it came. Similarly, we asked about his appetite— or lack of same— and what he was eating, plus how often he drank milk or ate dairy products, and so forth. Each of these questions helped us gain a sense of the possible physiology underlying his symptoms.
Another member of our team, Dr. Brill Jacobs, spent two hours with Mickey and Sandy during the initial palliative care consultation. She made specific recommendations for changes in his medications— using a low continuous dose of fentanyl, another pain medication, and scheduled low doses of haloperidol for anxiety and confusion. Because he had cramps and loose stools, she ordered a stool sample to be sent to the laboratory and tested for “C. Diff,” formally Clostridium difficile, a bacteria species that all too commonly causes diarrhea among debilitated, hospitalized patients.
The next day, with the new medications, Mr. Zimble was a little better overall. His pain had slightly lessened, but he now had full-blown diarrhea. Not surprisingly, the C. Diff test was positive. We started him on metronidazole, one of the very few antibiotics effective against the Clostridium difficile germ. Unfortunately, metronidazole commonly causes side effects of its own, specifically nausea and an upset stomach, and Mickey was no exception. It was another instance in which the treatment for a complication of a disease caused its own complications.
Over the next week, with our dogged clinical attention to his various diagnoses, doses of medications, and side effects, Mickey gradually improved. In fact, on morning rounds of the eighth day of our team’s involvement in his care, when I saw Mickey in his hospital room, he was up, sitting in a chair, and dressed in madras golf shorts, a pale green polo shirt, and a tan sweater. He was more talkative than at any time since our team had met him. He reported having a good appetite and said that he had eaten most of his breakfast. He opined— really more announced— that it was time for him to go home.
I was all for that. It was great to see him feeling so much better. Going home was definitely possible, but it would take some preparation. Though markedly diminished, he still had mild diarrhea. He was still weak on his feet, a “one person assist” in getting from bed to a chair or to the bathroom. He still had a urinary catheter. He still had large tumors in his liver. He was anemic. He was taking six different scheduled medications— some once a day, some twice a day, and some three times a day— and had four medications to use as needed for breakthrough pain, nausea, anxiety, and sleeplessness.
As much as I wanted to help Mickey get home, I didn’t want Sandy and him to run into problems at home that forced him to come back to the hospital, at least not if we could prevent them. That would feel like failure to Mickey and would be even more frustrating than waiting another day or two before going home.
I spent a long time that morning discussing hospice care with Sandy and Mickey. I explained that I thought it would be important for them to have the services that the local hospice program could provide. They knew that hospice cared for people who were dying and, while not surprised, were somber in realizing that Mickey now officially qualified as “dying.” I explained that hospice is the most comprehensive program of care for people who were facing the end of life— and for their families. I explained that a nurse who specialized in hospice care would be assigned to them and while they would see that nurse most frequently, hospice care entailed a team— very much like our palliative care team, which they had come to know— with a physician, chaplain, social worker, and even volunteer visitors. Any or all of these components of the team at some point might be of help. Additionally, a physical therapist from hospice could see him at home and teach them both ways of keeping him active, exercising, and safe. Importantly, a hospice nurse would be available by phone and able, if needed, to make an urgent home visit any time of the day or night. A hospice physician was always on call and available in an emergency. Accepting hospice care meant that anticancer treatments would not be part of the plan. This is often a sticking point for patients. In Mickey’s case, since Dr. Ernstoff clearly said he was too sick to receive more chemotherapy, that stipulation made little difference. For many people it does.
The very words “hospice” and “palliative care” tend to scare people. Although people who are struggling with cancer, heart disease, lung disease, or liver disease clearly benefit from the services that hospice and palliative care provide, for some the terms carry fearful symbolic power, even superstition. When I introduced myself as “Dr. Byock, from the Palliative Care Service” to Mr. Stamford, who was hospitalized for advanced heart failure, he responded defiantly, “I’m not that far gone!” The same week, another patient reacted to my suggestion that hospice would be helpful in her care and in supporting her family at home by plaintively asking, “Is there really no hope?”
Unfortunately, many people think accepting hospice— and by extension palliative care— means you have to give up on living and embrace your dying. It is a misconception that is rooted in Medicare regulations. Indeed, what is sometimes mistaken for “hospice philosophy” is actually a set of rules imposed by Medicare (as well as Medicaid and many insurance policies) that effectively requires people to choose between expensive disease-treatments and hospice care. No wonder they resist it.
This federal law passed in 1981 that established the Medicare benefit for hospice care restricted eligibility to people who had a life expectancy of six months or less, “if the disease runs its natural course.” Someone covered by Medicare who is seriously ill is required to sign a hospice election form, indicating “full understanding of the palliative rather than the curative nature of hospice care as it relates to the individual’s terminal illness.”
Under the law, Medicare reimburses hospice programs at a fixed daily rate to provide home-based services that are “reasonable and necessary for the palliation or management of the terminal illness as well as related conditions.” In return, hospice programs assume responsibility for all the costs of care associated with the terminal diagnosis.
Thus, if a seventy-five-year-old hospice patient with advanced lung cancer is admitted to the hospital with respiratory failure and dies after three days, his bill for upward of $ 27,000 would belong to the hospice program. If he lived a week or more, because he or his family decided to call 911 when he suffered breathlessness and in the emergency department he was intubated and sent to the ICU on a ventilator, that bill could run to over $ 100,000. Such charges can easily bankrupt a hospice program.
So it is not out of stinginess, but rather out of sound management and programmatic survival, that hospice organizations have been reticent to admit— and assume the financial responsibility for the care of— patients who are seeking active treatment for their disease. This explains, but does not excuse, why some hospice programs counsel patients to forgo treatments that might well benefit them. I am not talking about major surgery or highly emetogenic (translated: “makes you puke”) chemotherapy, but merely a transfusion every few weeks for a woman with bone marrow failure, who is comfortable and able to enjoy her days but too anemic to get to the dining room, or a liter of intravenous saline every other day for a man with cancer and chronic diarrhea after extensive bowel surgery who is too dehydrated to sit upright without passing out.
On several occasions, I have had hospice programs refuse to admit patients I have referred because they were “not hospice appropriate” or “not ready for hospice,” meaning that they might want to be hospitalized if they got an infection or, like the patients just mentioned, needed occasional blood transfusions or IV saline. At such times, I point out that the sharp division between life-prolonging and hospice care— the either-or choice— is not embedded in philosophy, clinical principles, or ethics but merely in statute. The Medicare regulations don’t prohibit such treatments. They merely require the hospice to pay for them. That’s a challenge particularly for smaller rural programs. However, many programs do provide these services despite the costs. When treatments like IV fluids or transfusions are feasible to provide and therapeutically meaningful to improving people’s quality of life, they can be given as part of hospice care.
In fact, although Medicare’s limitations have been encrusted in federal law, many private insurers, including a majority of Blue Cross Blue Shield companies, offer concurrent disease treatments and palliative care, including home hospice care, to people with serious, life-limiting conditions. Even before the 2010 health care reform act passed, United Healthcare and Aetna were offering concurrent care to a segment of their clients.
The either-or choice between disease treatment and hospice care that Medicare imposes makes people equate hospice with “giving up.” It’s the main reason many people resist, delay, or refuse to consider it without knowing what they are missing.
Thankfully, that was not the case with the Zimbles. Mickey immediately said he thought having hospice care at home “sounds like a good idea.” Sandy was initially reluctant “to have strangers in my home,” explaining that they were people who always took care of things themselves. She was more than happy to care for Mickey. As I listened quietly to Sandy explain her concerns, she got around to admitting that, despite her sense of privacy, she knew that she would need help.
I only had to suggest, “I think you should give hospice a try,” for her to agree.
It took a lot more encouragement on my part— bordering on stern insistence— for Sandy to agree to contact their four adult children and, if they offered, to allow them to help care for Mickey during their father’s first weeks at home from the hospital.
She reluctantly acquiesced and called her children that afternoon. She was soon glad she had taken my advice. Their son and one of their three daughters arrived the very next day. Their presence immediately lightened the physical and emotional weight of Mickey’s illness and care.
As soon as the C. Diff infection cleared, we stopped the metronidazole and started Mickey on prednisone to decrease inflammation around the tumors in his liver. His pain decreased and appetite reawakened. He developed a new love of chocolate-covered raisins, which he credited with giving him energy and raising his red blood cell count. He also developed a near obsession with Sudoku, through which he whiled away the hours and days waiting for his strength to return. Our team remained in close touch with the hospice medical director and the Zimbles’ primary hospice nurse. As Mickey’s symptoms diminished, we collaborated by phone with the hospice team on adjustments to his medications. Through late June and July, Mickey gained weight and energy, and finally set down his Sudoku books in favor of taking walks and even golfing a few rounds. In early August he was well enough to officially “graduate” from hospice.
On the day in mid-August that Mickey returned to see Dr. Ernstoff at the Norris Cotton Cancer Center, I also saw him in clinic. Mickey’s face was round and slightly puffy, his hair a bit sparse, and his skin almost translucent— all side effects of the prednisone, which was making him feel so good. He said that he had had “the best summer in memory.” He knew that he couldn’t stay on this dose of prednisone much longer because of the swelling, high blood pressure, and insulin-resistance (diabetagenic) side effects. He was eager to have more treatment for the tumors in his liver and hoping that Dr. Ernstoff still had “something up his sleeve.”
In fact, he did. By October, after three cycles of docetaxel, a potent anticancer drug, the tumors in his liver seemed to melt away. We began tapering his prednisone dose, and he and Sandy began making plans to winter at their home in Florida.
When Reed Abelson called Sandy in February 2007, Mickey was out playing golf. Reed tried again two days later with the same result. “He’s out there walking and playing nine holes of golf,” Sandy told Reed. And so that was what she wrote. The title of her article that ran in the New York Times on February 10, 2007, was “There Is Life After Hospice, and Even Golf in Florida for Some.”
What happened to Mickey is not all that uncommon. Research now shows that many people live longer with hospice care. A research team led by Dr. Stephen Connor analyzed Medicare data from 1998 through 2002 for patients who had a serious diagnosis, such as congestive heart failure and cancer, three years or more before their death. Dr. Connor’s team then compared the survival of those who received hospice care to those with the same conditions who did not. Overall, patients receiving hospice care lived an average of twenty-nine days longer. The survival advantage was statistically significant for people with congestive heart failure (who lived an average of eighty-one days longer), lung cancer (thirty-nine days longer), and pancreatic cancer (twenty-one days longer) with positive survival trends for those with colon, breast, and prostate cancer. Perhaps equally important, hospice care was not associated with shorter length of life for any group of patients.
A growing body of clinical research suggests that for people with advanced illness, improvements in quality of life go hand in hand with extending the length of life.
At Dartmouth, a palliative care research team led by Dr. Marie Bakitas, whose doctorate is in nursing science, enrolled 322 patients with advanced cancer receiving standard oncology care. Patients gave permission to be assigned by chance to one of two groups. One group received phone-based visits with a nurse who inquired about their symptoms and provided education, coordination of care, and supportive counseling for living with their illness. The other group did not. The main focus of the study was to assess the effects of this simple, less comprehensive, and relatively inexpensive palliative intervention on people’s well-being and health care use. On average, people receiving this “low-dose” palliative intervention had significantly higher mood and self-reported quality of life, while there was no significant effect on symptom intensity (which was low in both groups) or on total health services used through the end of life. The study was not designed to investigate the impact on survival, yet it found that median length of life was 14 months in the intervention group and 8.5 months for those receiving standard oncology care. By the study’s completion at three years, similar numbers of patients in both groups had died.
Convincing evidence of the capacity of palliative care to simultaneously improve quality and extend length of life came from a study by oncologist Dr. Jennifer Temel and associates at Massachusetts General Hospital. After giving their permission to participate in the study, 151 patients who had been recently diagnosed with incurable metastatic lung cancer were randomly assigned to receive cancer treatment with or without concurrent palliative care. This was team-based, “full-dose” palliative care of the sort that our team at Dartmouth provides. Patients receiving palliative care experienced substantially lower incidence of depression and higher quality of life on three standardized, multidimensional questionnaires. The most striking finding was that patients in the palliative care group lived a median of 11.6 months, compared to 8.9 months in the usual care group. A 2.7-month survival advantage might not seem dramatic, but this magnitude of therapeutic effect would be considered a major advance if it were attributable to a new chemotherapy treatment for people with late stages of lung, pancreas, breast, or colon cancer. In Dr. Temel’s study, patients in the intervention group were less likely to receive aggressive cancer treatments within two weeks of their death and more likely to receive hospice care at home.
This study rightly made headlines when it was published and generated substantial discussion. It now seemed possible that team-based palliative care extended life to a degree comparable to newer immune-based chemotherapy drugs that may cost $ 6,000 to $ 10,000 per month and can cause rashes, bleeding, infection, and other life-threatening side effects. In contrast, team-based palliative care for a patient and family typically costs several hundred dollars per month and does not cause rashes, bleeding, or infections. With palliative care, quantity and quality of life are not at odds; indeed, being comfortable is considered a key to living longer.
Mickey’s good quality of life continued into early spring. Dr. Ernstoff spoke with a specialist in neuroendocrine tumors in Florida and together they arranged for Mickey to continue receiving chemotherapy infusions every three weeks during the winter and spring in Florida. During the last days of March he felt weaker and his appetite was poor. His oncologist in Florida repeated blood tests and a CT scan, and told Mickey and Sandy that the tests now showed that the cancer was progressing despite the chemotherapy. He said that it was now time again to bring in hospice care.
This time, almost magically, to Sandy’s surprise and relief, all four of their children arrived at their Florida home that same night. They explained to their parents that they were staying for the duration. The duration turned out to be just a handful of days. His hospice nurse visited in the morning to review plans for managing his symptoms and to make certain that everything they needed was in place. On Friday, April 6, 2007, Mickey said he didn’t have the energy to get up and get dressed.
In the early afternoon he became restless and uncomfortable, and insisted he needed to get out of bed. He confided to his son, Barry, that he was dying. Barry assured him that everything was in place and that he and his sisters were all there to help care for him and to support their mom and one another. The hospice nurse returned at 3: 30 in the afternoon. She placed a few drops of highly concentrated oral morphine under his tongue and gave him a small dose of lorazepam solution. He was more comfortable within minutes.
Mickey died peacefully at 5: 22 p.m. with Sandy and their children sitting around his bed.
Over lunch with Sandy, nearly three years later, I asked her to reflect on their experience. Sandy said she still gets sad whenever she thinks of his dying but feels Mickey’s last months were a gift. “Through palliative care he did have wonderful quality of life. When you met him in the hospital, he never dreamt that he would go to Florida again. He never dreamt he would walk or play golf!”
When I asked Sandy what she thought had been helpful to Mickey’s care, she was emphatic that the quality of life and length of his life were connected. By relieving his pain, decreasing the swelling in his legs so that he could walk, and adjusting his medications so that his appetite came back, she felt he’d regained his will to live.
Were there lessons she would tell others? I asked. She was also emphatic. “If you hadn’t made me involve my children and my family— I wouldn’t have done it, because I was ‘the mother.’ I’d say, ‘Oh, my kids are busy.’ ” (At the time, their “kids” were all in their fifties.) “But you said, ‘They have to be here.’ So, I listened to you.”
She has become a true believer.
“Now I say the same thing to all my friends who have someone who is ill. It is important that people know that they cannot be modest. They have to have the support of family to rally around and work it out. That is something that you taught me, Ira. I have included my kids in everything since, but it was something I never did before because I was the mother.”
When any one person becomes sick, a family inevitably experiences the illness. Each and every member of a person’s emotional family feels an impact in his or her own way. I often say to families, “You are each going to experience this as individuals. You might as well go through it together.”
Although the evidence continues to build, it is still surprising to many people that hospice and palliative care help patients live longer. Hospice, particularly, is associated in people’s minds with dying. That is a result of Medicare’s regulatory restrictions, but hospice is— and should be— much more. Because it is funded by Medicare— under specific eligibility criteria— hospice programs are widespread and the most highly developed and available way of delivering palliative care in the United States.
In many areas, hospice does serve patients in hospitals and nursing homes. However, for the most part in the United States, hospice cares for patients who wish to stay at home through the end of life. It is often said that the main problem with hospice care is that you have to be dying to get it.
Hospital-based palliative care programs are much newer. A few years earlier the sort of care that our palliative care team provided to Mickey and Sandy Zimble would not have been available. Without the fairly intensive level of care that our team provided while he was in the hospital— we saw him at least daily and sometimes two or more times when he was in pain or anxious— Mickey might well have died within a week or two of going home.
With little public awareness or fanfare, in recent years, hospital-based palliative care programs have flourished. Almost all hospitals of two hundred beds or more— and many smaller hospitals— now have at least a small palliative care program.
Clinical outcome studies suggest that palliative care can alleviate pain, shortness of breath, and other distressing symptoms among seriously ill people, enhance their quality of life, and improve satisfaction on the part of patients and families.
Key components of palliative care, such as family meetings to clarify goals of care, clear communication about prognosis and expected outcomes, and counseling related to life completion and closure can decrease conflict over treatment decisions. These elements of care have been shown to diminish post-traumatic stress among family members after a patient has been in the ICU, and may lighten the weight of grief family members experience after a patient dies.
In another study, Dr. Bakitas’s research team at Dartmouth-Hitchcock Medical Center reviewed charts of one hundred patients who died in our hospital during 2008. Thirty-two patients had been seen at least once by our clinical palliative care team. The patients served by our palliative care team were more likely to have an advance directive document on file (72 percent vs. 48 percent) and less likely to die in an ICU (25 percent vs. 67 percent). They averaged fewer invasive interventions, such as CPR, intubation and assisted ventilation, kidney dialysis, chemotherapy, and medically administered nutrition, but were significantly more likely to have been visited by a social worker or chaplain. Importantly, families of patients who were served by our palliative care team were more likely to be present at the time of death.
When we first meet patients, we often cannot predict the course of their illness. Even when cure is out of reach, for some people, like Mickey Zimble, late-stage treatments can help stem the tide of disease or enable people to maintain an even keel. Part of our role becomes helping people stay the course of treatment, managing practical problems, and alleviating any side effects and complications that arise.
I often meet people who know full well that they are dying but want to stay alive for a special event. Paul Gilliam fit that description. In his early fifties, Paul was being slowly killed by colon cancer that had blocked his bowel and caused puddles of infected fluid to form in his pelvis. He was miserable, and desperate to stay alive to attend his only daughter’s wedding. Our palliative plan of care included daily IV antibiotics and monthly CT scans so that the interventional radiologists could reposition catheters that drained his infections. To control pain he wore a fanny pack with a small portable pump that delivered a continuous IV infusion of hydromorphone and had a PCA button that he could push to give himself an extra dose up to every ten minutes, when he needed it. Because he was younger than sixty-five and had insurance through his employer, he was not bound by Medicare’s “either-or” restrictions for hospice care. Therefore, Paul was admitted to hospice and the hospice team in his community coordinated his health care at home, including making sure that his antibiotics and hydromorphone were administered as prescribed. His insurance paid for his scans, procedures, and hospital bills separately.
All of these measures enabled Paul to live with his cancer and keep his infections at bay. Still, he remained discouraged that he could not receive more chemotherapy. To him chemotherapy represented hope for living longer. However, Paul’s oncologist had been clear that because of his infections, any further compromise of his immune system would be deadly.
There was another perspective that I wanted to offer. “Paul, for what it is worth, when people have been fighting cancer for a long time, as you have, there often comes a point at which they may live longer if they decide to live with their cancer rather than continue to fight against their cancer. What I mean is that if a person is tired and run-down, more chemotherapy may not be in his or her best interests and may actually shorten the person’s life.
“Oncologists tend to start with the most effective chemotherapy they have for a patient’s cancer. Second-, third-, and fourth-line treatments may be less effective or carry more side effects. When cancer grows despite chemotherapy or when it recurs, the situation may become one of diminishing returns on a person’s investment of limited time and energy. Since most chemotherapy affects normal cells as well as cancer cells, these medications can take a toll on one’s general health— something I know you know all too well.”
“I know this in my head, Dr. Byock,” Paul said, “but when I get home, on the days I feel better, it drives me crazy that I am not doing something to try to live longer.”
These are feelings I commonly hear people express.
“I hear you, Paul,” I replied, “but please consider that what you need most— certainly right now, and possibly in the weeks ahead— is to concentrate on getting the best nutrition you can, and both rest and exercise when you are able. People are more than their organ systems. Being comfortable and emotionally well within yourself is also important to your general health and to living longer. I believe that is why studies have shown that people who receive hospice care actually tend to live longer than people who don’t.”
In Paul’s situation it worked. With intensive supportive care he lived to attend and enjoy his daughter’s wedding and a few months more.
When I approached Alonzo Scarza about hospice care, I knew it would be a sensitive conversation. At seventy-two years of age, Alonzo had never slowed down. Now he had been diagnosed with esophageal cancer that had spread throughout the lining of his stomach. The surgeon who had tried— and failed— to remove the tumor told him that his stomach resembled a deflated leather football and was every bit as stiff.
Alonzo couldn’t eat. The surgeon had placed a feeding tube, which traversed his abdominal wall and could deliver nutrient solution directly into his jejunum. But Alonzo’s gut would not tolerate more than 300 or 400 calories a day, nowhere near enough to keep him alive in the long run.
When I first met him, seven months earlier, Alonzo was still stocky and built like a football player. I wasn’t surprised when he told me that he’d been a star defensive lineman in high school. There were half a dozen photos of Alonzo taped to his hospital room wall, usually grinning, with his arm around one of his kids or wife or sister. Except for a midlife belly, he had retained his muscular frame through his adult years. Now, like his shriveled stomach, he appeared deflated. His usually smooth dark skin had a ruddy purplish hue and cobbled texture of a rash caused by one of the chemotherapy medications. It took a conscious effort for him to turn himself in bed and he needed help transferring to the commode or recliner in his hospital room.
Our team had met Alonzo during previous hospitalizations. He was almost always animated. Alonzo was proudly Italian-American, but he frequently reminded me of Anthony Quinn in the film Zorba the Greek. Loud, exuberant, arms open. This was his third time in the hospital in the past two months and his fifth time since February. This time it was for a “port infection.” The reusable injection site implanted under his skin for administering chemotherapy and other medications had become colonized with MRSA, a Staphylococcus aureus bacteria that is resistant to nearly all antibiotics. Having MRSA bacteria in his bloodstream was acutely life-threatening. But in Alonzo’s case, the MRSA infection was already under control and on the way to being cured. Treating it had required removing the port and long intravenous catheter to which it was connected, and two weeks of antibiotics through new IVs in his forearms or wrists that were replaced every few days. Things had gone well and he was due to be discharged in just a couple of days. I expected him to be upbeat and talkative, but his mood was unusually dark. Alonzo was frustrated, he said, because Dr. King, his primary oncologist, had stopped by his hospital room and explained, yet again, that he could not have more chemotherapy.
He had been diagnosed with cancer in early fall, little more than half a year ago, but said, “It seems like another lifetime,” adding with his arm raised for emphasis, “before the worst fxxking winter of my life.”
When he was diagnosed, even though his cancer appeared to be confined to the juncture of his esophagus and stomach, the odds were long against his cancer being cured. Still, aggressive treatments seemed worth a try. During the discussion at Gastro-Intestinal Tumor Board, the hope was that chemotherapy might shrink the tumor enough for an oncologic surgeon to take out his lower esophagus and most of his stomach and fashion a small pouch to function as a neo-stomach. If all went well, he would be able to eat nearly normally (small frequent meals) within six months to a year. Unfortunately, instead of things going well, his first round of chemotherapy was a nightmare. He had terrible mucositis— the lining of his mouth and throat became inflamed and then raw, as if they had been burned and the skin sloughed off— and the chemotherapy caused his blood counts to plummet. After eleven days in the hospital he had recovered enough to go home. A week later he was readmitted with swollen legs, readily diagnosed by ultrasound as clots in the veins of both his legs and his pelvis. Adding insult to injury, an allergic reaction to heparin, the medication he was given to dissolve the clots and prevent new ones, caused his platelet counts to fall even further than they had from the recent chemotherapy. This put him at high risk of bleeding. Thankfully, a different blood-thinning medication worked well. His platelet count rose and, once again, he was well enough to go home.
Two weeks later, he restarted chemotherapy. At least twice a month, one of the nurse practitioners from our team, Betty Priest or Helen Walek, had an appointment with Alonzo on a day he came for cancer treatments. At least twice during the past four months, they had gently raised the topic of hospice care with Mr. Scarza. But to Alonzo, hospice meant giving up. He was having no part of it.
Alonzo was a self-described stubborn man—” I’m hardheaded, no sense denying it,” he said— but he was hard not to like. He was a quintessential character, a second-generation Italian-American whose facial expressions, bighearted smile, way with words, and life story were positively cinematic. His father was just six years old when he came to America, through Ellis Island, with Alonzo’s grandparents. Alonzo was the same age when he, his father, Anthony, and his mother and younger sister were interred during World War II.
After the war, his family moved to Reno, Nevada, and his father worked in construction, becoming a foreman for a thriving building company. Alonzo followed in his dad’s footsteps and learned to run heavy machinery. He, too, became a foreman and then supervisor of major construction projects. Finally, he started his own company. He loved his work and his employees— and they loved him. He succeeded in business and, it seemed, in life. Besides his work, Alonzo loved horses. Mostly he loved owning racehorses and betting on them; the latter passion he retained through his illness.
In the hospital, on days he felt reasonably well, he was a fount of captivating stories about the horses he had loved and races his horses and jockeys had won or lost. One knew when he felt poorly, because he wouldn’t regale you with stories. Even on his worst days, Alonzo was patient and uncomplaining.
He married for the first time in his late thirties, and he and his wife had a son whom they named after his deceased father. Tragically, his wife and son were killed in a car accident when little Anthony was just nine. Alonzo grieved, but went on. In telling me about that time in his life, he said he knew that life was not fair and he did not expect only joy. He remained single for nearly two decades, absorbed in his business and “the ponies,” until 1992, when he met and fell in love with Carla. The daughter of a close friend, Carla was twenty-two years younger than Alonzo. They married and soon Carla gave birth to a little girl, Toni, who was now eight years old and the apple of Alonzo’s eye.
During the fall and winter from hell when he was hospitalized, first for his surgery, then for the side effects of chemotherapy, and clotting and low platelet counts— whenever things did not look good, Alonzo would explain that he was fighting to stay around “for Carla and Toni.” Whenever one of us, or Dr. King, asked him what his goals were, his answer was “to get stronger” so that he could have more treatments.
On this day, however, it was time to bring up hospice again. We had finished our routine of discussing his abdominal and mid-back pain, whether he had significant relief when he pushed the PCA “pain button,” and, on average, whether he’d been using it any less since we had adjusted the continuous dose yesterday. Yes, he was using it considerably less. We asked how he’d slept (not so well, due to being awakened whenever his IV pump beeped and at five a.m. to have his blood pressure checked) and whether he had gotten out of the room at all yesterday (yes, for a few laps around the ward and one walk to get a Boston Globe at the store on the medical center’s Main Street).
Alonzo knew that he was getting ready for discharge, but he was not eager for it. He felt secure in the hospital. The nurses knew him well and universally liked him— and they were always just a push of his call button away.
There was no good medical reason for him to stay in the hospital. The MRSA had been defeated, the causes of his various symptoms and general decline were known, and symptomatic treatments were in place. No further tests or scans were planned. Likewise, there were no plans at present to treat his cancer. He was far too weak to receive more chemotherapy. Dr. King had been explicit that he would need to gain at least fifteen pounds and be able to walk without assistance— except with the aid of a walker— before he would consider giving him another dose of chemo. This was a bone of contention for Alonzo.
I knew I had my work cut out for me.
“Alonzo, I have to have another serious conversation with you about going home.”
He looked at me and nodded imperceptibly.
“Your infection has cleared up. Your pain is pretty well controlled.” I spoke slowly. Although I had other patients to see, this discussion could not be rushed. In the practice of palliative care this conversation was a medical intervention every bit as important as an operation is to a surgeon.
“In sending you home, I want to make sure you are getting the best care possible. At this time, I believe that includes hospice care. I know that’s a sensitive topic,” I said, “but I want you to hear me out.”
Those last words had not left my mouth before he gave me a look that he’d give a guy who was trying to sell him a lame horse.
“I don’t know how many times I have to tell you, I am not giving up. I will walk back into that office— mark my words,” he said.
“Alonzo, you are a strong man. I have been listening. We all have. We are all on board with helping you get there. We think it is a long shot, but you have a lot to live for and you have beaten long odds in your life before.
“It will take a lot for you to get stronger. You need help with your nutrition and medications and with getting around. Look at all the care that the nurses have been doing for you here. When you go home, you are going to continue to need your pain and nausea medications, and the blood thinner injections, and the J-tube [jejunostomy tube] infusion. Carla is good with all of this, but it’s a lot for one person to do. I want her to have all the help she can get.”
I explained that hospice is the highest level of home care there is for people in his situation. “It’s like home health care on steroids,” I said. “I know that you don’t want to hear about it because hospice is intended for people who are dying, but there’s a loophole.” I paused. He looked up. Now I had his attention.
“Officially, you do not need to die to get hospice care; you just have to be sick enough so that no one would be surprised if, six months from now, you had died. Here’s the deal. On the papers that they will give you to sign, it will say that to qualify for hospice you must acknowledge that you have a condition that is likely to take your life ‘if the disease runs its natural course.’ ” I made air quotes with two fingers of each hand as I spoke. “The words ‘if the disease runs its natural course’ on the admission form comes right from the law that made Medicare start paying for hospice care.
“What you have been trying to do— what we have all been trying to do— is to change the natural course of this disease. That is still the goal. But let’s look at the trends, Alonzo. Months ago you were visiting the stables and track every day, but during the past six months your strength and appetite and weight have gradually declined.” Now I traced a set of stairs in the air with my index finger, each step headed down.
“Let’s face it. If we are unable to change the natural course of the disease, no one will be surprised if you will have died six months from now. Isn’t that right?”
Our eyes met. He hesitated only a second. “Yes. That’s right.” He nodded.
“I just don’t want too many people in our home. I think we can get by with the nurse coming a couple of times a week.” This was a second level of resistance and might mean I was making progress.
“I want to answer that in a few ways. First, it is lousy to have your privacy invaded. All I can say is that we will ask the hospice team to keep things to a minimum and respect your privacy and your family’s privacy. In my experience, once people actually meet the hospice nurse who will help care for them, he or she stops being an idea and becomes a person. Familiarity builds quickly, and before long it doesn’t feel like an intrusion to have the nurse visit.
“I also want you to know that I am bringing this up because I have been listening. Even with hospice involved, you will have more privacy at home than in here. My worry is that if we send you home with routine home health care— a nurse to visit once or twice a week, it will not be enough support and there will be a time when we’ll be rushing to catch up to your and Carla’s needs. If something happens— maybe a bad episode of pain or your IV becoming unplugged— you could very likely end up back in the hospital. When situations like that occur, Alonzo, the truth is sometimes people conclude that ‘we can’t manage at home’ ”— my air quotes were back—” and the person who is ill ends up in a nursing home. I don’t want that to happen here.”
I realized that I was scaring him, but I have seen situations similar to his play out in this fashion far too many times not to warn him about what might lie ahead.
I explained that hospice care just might help him live longer— that ironic as it might seem, hospice would give him the best chance of meeting his goal of getting strong enough to receive more chemotherapy. I was honest that even with hospice, I thought the chances were small. Still, I was doing my best to get him to let the hospice team in the door.
“The hospice program can send a nurse in two or three times a week if all is well, but more frequently if needed. A physical therapist from hospice can see what sort of equipment might help you transfer out of bed. They can adjust your J-tube infusion so that as your body tolerates it, you can hopefully gain some weight. If all goes well and you gain the weight and get stronger, you can simply ‘graduate from hospice’ and get more chemotherapy. There is nothing wrong with that. If you do not get stronger, you will already know the team that can best support you and Carla and Toni through the end of your life.
“Capishe?” I asked in my best Jersey Italian.
“Yeah, I understand,” he replied, nodding his head as he continued to ponder the change in his situation. His mouth was in a tight smile, but he did not look happy; rather, he looked resolved, as if his horse had just crossed the line fourth. “It is what it is, eh, Doc?”
Few people in Alonzo’s situation do graduate from hospice. It may be as few as one in twenty. Mickey Zimble was one of the lucky ones. Most people in Alonzo’s predicament go on to die at home, with hospice care continuing. Alonzo did, only three weeks after being discharged. He was at home, comfortable, and from his family’s report, at peace.
My favorite example of someone being referred to palliative care, including hospice, and living longer is not Paul Gilliam or Mickey Zimble or Art Buchwald; it is my cousin, Edith Glikin.
Norman Glikin, Edith’s late husband, was my mother’s cousin. Edith and Norman were my parents’ best friends. Growing up, they and their children, Sandy and Susie, were my favorite relatives. Our families spent a lot of time together. As a young boy, during a summer week I spent at their home playing with Sandy, Edith taught me to ride a bicycle, for which I am eternally grateful.
In late January 2004, at the age of eighty-three, Edith underwent heart surgery. Things went well during surgery, but she had a very difficult recovery, marked by prolonged heart failure, breathing difficulties, dangerous cardiac arrhythmias, and profound depression. She was in the hospital for weeks, much of the time in pain and generally miserable. During the first weeks, she had to have a thoracentesis performed on three occasions to remove fluid around her lungs. In the larger scheme of medical procedures, it is not a big deal. But it was to Edith. In an X-ray suite, sitting on a cold table, her robe was removed and the sides of her chest were swabbed with iodine solution (also cold) as a disinfectant. A small shot of local anesthetic was injected in a dime-size area at a site on her mid-back, underneath which lay a pool of fluid. The radiologist passed a long, wide needle (roughly twice the diameter of a spaghetti noodle) between her ribs until fluid was returned. Then a guide wire was passed through the needle, the needle was withdrawn, and a firm, tapered plastic catheter about the gauge of macaroni was threaded over the guide wire and into the pleural effusion that had collected between the linings of the chest wall and lungs. The guide wire was then withdrawn and the outer end of the catheter was connected to a stopcock. Being very careful to maintain negative pressure on the catheter at all times, the physician who performed the procedure withdrew fluid into a large syringe. When he had drained all he could, the catheter and syringe were removed and a watertight dressing was applied to her skin. Then he repeated the procedure on the other side.
Edith lost all her appetite while in the hospital and, therefore, wasn’t getting the calories or protein she needed to get stronger. She was unable— or refused— to participate in physical therapy. Edith thought she was dying and repeatedly asked her children— Sandy and Susan and their spouses— to let her go home. Several of her immediate family members, including Sandy, who is a pediatrician, his wife, Jenny, and sister, Susan, who are both nurses, worried that she might be dying. Edith’s cardiologist disagreed. He explained that she merely had a shocked heart syndrome. It was unfortunate, he said, but it happens sometimes. While bothersome, he was sure she would eventually get better. With this assurance, the family acquiesced and prevailed upon Edith to go to a rehabilitation center. The first one was awful and was too far from her daughter, Susan, so after a few weeks she was transferred to another.
Things went from bad to worse and Edith, clearly failing to thrive, was readmitted to the hospital. Now there was concern that she needed a PEG tube to supplement her nutrition. Antidepressants that had been prescribed during her first hospitalization were changed. Edith continued to decline.
I had been staying in touch with the family by phone but had not been part of decision-making conversations. By early March 2004, Jenny Glikin called me and asked me to weigh in. She described Edith as deteriorating in body and spirit. Her heart failure was stable, but she was not eating, exceedingly weak due to her surgery and deconditioning, and getting weaker.
I asked Jenny whether she would be surprised if Edith died within the next six months.
“Not at all. I would be surprised if she were alive in six months!” Jenny replied.
This is a slight variation of what’s come to be known as “the surprise question”—” Would you be surprised if this patient died in the next year?”— that has been promulgated by palliative care physician Joanne Lynn as a simple way of screening for eligibility for palliative care. Studies have shown that a physician’s response to the surprise question is a significant prognostic indicator— that is, a predictor of a person’s life expectancy— in cancer and kidney failure, as well as in a large primary care practice.
I suggested that we consider referring Edith to hospice and Jenny thought it made good sense. Her general debility combined with her heart failure would make her eligible under Medicare. When Sandy and Jenny approached Edith’s cardiologist, he told them the idea was unheard of. When I subsequently called him, he initially said the same thing to me. However, when I asked him the “surprise question,” he had to admit that he wouldn’t be shocked if she died in the next six months, or even the next three months. He agreed that she had been declining. Her performance status was awful, her serum albumin was less than 2— an objective sign of malnourishment. I explained that the family was willing to care for her around the clock (including hiring nurses’ aides to sit with her at night) and that the hospice program would send skilled nurses to weigh her and take her blood pressure and pulse, examine her with special attention to her breathing and edema, and help manage her medications, including her furosemide (Lasix) and potassium. A physical therapist with hospice would see her twice a week and would teach both Edith and her family strengthening exercises. This time, he reluctantly agreed— or acquiesced.
It all worked. Once at home, Edith’s mood improved. She started eating. She worked with the physical therapist and her nurses’ aides and did her exercises faithfully. Her improvement was slow but steady. Her shocked heart syndrome gradually resolved. Her swelling subsided and her depression lifted. Within three weeks she was up and around with a walker; within five weeks, she was feeling better than she had been before surgery. She graduated from hospice.
Fourteen months after her surgery, I danced with Edith at a family wedding. For me, Edith’s experience epitomizes the connection between higher quality of life and survival. Like Mickey Zimble, she recovered her will to live and, thereafter, she recovered. We recently celebrated Edith’s ninetieth birthday. She has just had the battery of her implanted cardiac defibrillator replaced. While she was in the hospital I interviewed her about her thoughts on having been a hospice patient.
She said her cardiologist, whom she sees every six months and likes very much, still thinks I am crazy. She laughed out loud when she told me that he teases her every time she comes in for her routine appointments. “He’s clueless! I wouldn’t be here if it wasn’t for you and hospice!” she joyfully exclaimed. Her children and I would make the same decision again. [97-125]
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