51茶馆

How do you help someone like Charles?

Sixty-nine years old. Metastatic lung cancer. History of substance abuse. A few months left to live. Katie Fitzgerald Jones PhD鈥�22 looked down at the papers in front of her on the conference table on a recent Thursday morning at the West Roxbury Veterans Administration Hospital outside Boston. A nurse practitioner at the VA, Jones was sitting around the table with eight other nurses and social workers of the hospital鈥檚 palliative care team, whose job it is to figure out how to make their patients鈥� lives as comfortable as they can in the time they have left.

鈥淗e has serious mental illness and chronic pain,鈥� said Jim Parris, who is Charles鈥檚 doctor and was there seeking Jones鈥檚 advice on the challenging case. 鈥淗e lives with his significant other and their cats. She also, I believe, has serious mental illness. It鈥檚 a social situation without a lot of supports.鈥�

Jones specializes in pain鈥攎ore specifically, in how to manage the chronic pain of people who have had past substance abuse issues. Opioids are often the most effective pain treatment, but prescribing them has been complicated by the epidemic of opioid addiction over the past twenty-five years. That has created a conundrum for doctors and nurses: How do you treat someone with a medication they鈥檝e had addiction issues with in the past?

Charles (not his real name) is a difficult case. He started hearing voices after serving in Vietnam and has a history of opioid use. 鈥淚t looks like he鈥檚 made over twenty attempts on his life, about half of them through overdose,鈥� Jones said. That鈥檚 probably why a doctor hasn鈥檛 already prescribed an opioid such as oxycodone for his pain, she surmised. 鈥淚 would glean he had some level of tolerance to opioids,鈥� she said, 鈥渙r else his substance use disorder kicked up when he developed chronic pain.鈥� He now takes buprenorphine, otherwise known as Suboxone, which is a medicine that鈥檚 used to treat opioid use disorder but can also be used to alleviate pain. Only in Charles鈥檚 case, buprenorphine didn鈥檛 seem to be working. Jones noted that he was taking a high dose of 24 milligrams, but still suffering from pain. Oxycodone might work better, but given his history, there was the chance it could trigger an overdose if not managed properly.

Jones asked the team whether Charles would agree to go somewhere, such as a hospice care unit, where a nurse could control the delivery of pain medication. 鈥淗e鈥檚 willing one day, and then wants to go home tomorrow,鈥� responded his social worker, Millie Mitchell, explaining that the VA鈥檚 hospice units are located in places his significant other can鈥檛 easily get to. Another option might be a skilled nursing facility closer to home, Jones said, 鈥渂ut some of those discriminate against people with substance use disorder, particularly when they are on a medication like methadone or buprenorphine.鈥�

The team continued to run through the options. If they were able to find a facility that would take Charles, and where he would be willing to go, they could drop his buprenorphine dosage down to, say, 16 milligrams and add oxycodone into the mix to better alleviate his pain.

鈥淚 wouldn鈥檛 want to do that unless he is going to go to a facility,鈥� Parris, his doctor, said.

鈥淔or sure,鈥� Jones agreed.

They eventually decided to keep Charles, his health failing as he approached the end of his life, on his current medication, while continuing to try to persuade him to go to a more structured facility.

Jones is faced with choices like this daily鈥攂oth for her own patients, and for chronically ill patients around the country. Starting with research she conducted at 51茶馆鈥檚 Connell School of Nursing, she has become a national expert on pain management for those who have suffered from substance abuse. She鈥檚 published papers on the topic in prestigious journals, consulted with doctors around the country, and prepared materials to educate health care providers on the most compassionate and effective ways to help patients who are often desperately in pain, and sometimes close to death as well.

For her, that mission is in keeping with her belief that nursing is about caring for the whole patient. 鈥淭he definition of nursing is helping patients achieve their best quality of life while optimizing their health, and that鈥檚 what I do in palliative care,鈥� she said. 鈥淚 could tell you what I would want, but it doesn鈥檛 mean anything if it isn鈥檛 what they want.鈥�

Jones received an early lesson in listening to patients鈥� needs years ago while she was a second-year nursing student at Simmons College in Boston, working with a cancer patient at Brigham and Women鈥檚 Hospital. 鈥淪he was demanding to be discharged, and people didn鈥檛 understand why she was being so difficult,鈥� Jones recalled while seated in a conference room at Boston鈥檚 Jamaica Plain VA Medical Center. Jones spoke with the patient and discovered that she had only a short time left to live, and that doctors had scheduled a procedure for the following day鈥攈er daughter鈥檚 birthday.

"She really wanted to be home for it,鈥� Jones said. She talked with the doctors and had the date of the procedure changed. 鈥淔or me, it was just a few calls,鈥� she said, 鈥渂ut for her it was everything.鈥� The experience helped her realize how a little empathy can have a huge impact on people鈥檚 lives. Jones said her husband, Michael Jones, thinks she can sometimes take on a little too much of other people鈥檚 pain. 鈥淚 can sit with suffering maybe more than somebody else can without feeling like I always have to fix or change it,鈥� she said. 鈥淛ust being present can be really powerful.鈥�

Jones grew up in Scituate, a suburb on Boston鈥檚 South Shore, where her mother and several aunts were nurses. 鈥淚 always saw her coming home from work with a smile,鈥� she said of her mother, who worked in the local school and also at Brigham and Women鈥檚. 鈥淪he would tell anecdotes of how she was taking care of this person, and she did this thing, and it made a big difference. It was clear she derived a lot of meaning from her work.鈥� Her father, meanwhile, was an engineer who filled his bookcases with military histories and always had war documentaries playing on the History Channel. 鈥淗e knew every story about Vietnam and World War II,鈥� said Jones, who attributes her dedication to working with veterans today to that upbringing.

Jones started volunteering at a local nursing home in high school and fell in love with caring for elderly adults. She earned her bachelor鈥檚 and master鈥檚 degrees at Simmons in a five-year program, developing a special affinity for working with the more difficult patients. 鈥淚 was always drawn to people with serious illnesses,鈥� she said. 鈥淣ot the person who comes in with a broken leg, but the person who is really bearing the burden of a life-altering condition.鈥�

After graduating in 2006, she worked in primary care before getting a job in 2011 as a palliative care nurse practitioner at the Dana-Farber Cancer Institute. There, she began to see firsthand the way that chronic pain can crush a person鈥檚 spirit, leading to depression and isolating them from loved ones. She learned to approach each patient as an individual聽 to determine how to help them live as well as possible. 鈥淪omeone with pancreatic cancer might have terrible pain in their abdomen, while someone with head and neck cancer might feel like they are getting a blowtorch taken to their mouth when they get radiation,鈥� she said. For those at the end of life, the goal was 鈥渕aking sure they are comfortable and die with dignity.鈥�

By that time, the increased awareness about the addictive nature of opioids such as oxycodone had caused doctors to pull way back on prescribing them. 鈥淣ow if you have chronic pain, it鈥檚 quite difficult to get an opioid,鈥� Jones explained. But doctors continued to make an exception for cancer patients, prescribing opioids at high rates out of a belief that the disease required particularly strong medication. Yet Jones could see some cancer patients misusing the medication. 鈥淭hey would use opioids to manage the suffering they had in their life鈥攏ot necessarily the physical pain, but the existential pain of not being able to work anymore or support their family, the loss of self that can come with a cancer journey.鈥�

Jones left her full-time job at Dana-Farber in 2014 to start a family鈥攕he and her husband have two children鈥攁nd worked part-time at a senior care facility, where she started a palliative care program. In this role, she again saw how patients who鈥檇 taken opioids for pain earlier in life could wind up developing a substance use disorder. Because of the stigma, however, most cancer programs don鈥檛 have an integrated approach to dealing with addiction. 鈥淚f you have hypertension or diabetes, they might say that鈥檚 important to address, because you might not tolerate chemotherapy,鈥� Jones said. 鈥淏ut if you went into a cancer clinic with alcohol-use disorder and asked for treatment, they wouldn鈥檛 know what to do.鈥� And well-intentioned federal regulations only compounded the challenges. For instance, methadone is a less-addictive drug that鈥檚 used to treat opioid withdrawal symptoms鈥攂ut by law it can only be administered in licensed treatment facilities. That means that cancer patients with substance use disorders often must travel to different locations to receive their chemotherapy or radiation treatments and their methadone doses.

It wasn鈥檛 until Jones began working at the VA in 2016 that she found models for dealing with opioid use disorder and chronic pain at the same time. The VA had been a leader in treating addiction since the Vietnam War, when veterans developed addiction issues at high rates. Unlike many health systems that treated substance use disorders separately from physical ailments, the VA pursued a more integrated approach. 鈥淚 have patients that could get methadone, and then take the elevator up a couple of floors to get chemotherapy,鈥� Jones said.

Studies were also beginning to show that buprenorphine could be just as effective at managing pain as oxycodone but without the dangerous side effects. In high doses, some opioids can lower a person鈥檚 respiratory drive, leading them to stop breathing and die during an overdose. 鈥淏uprenorphine doesn鈥檛 do that, so you can take lots of it and won鈥檛 ever have respiratory depression,鈥� Jones explained. 鈥淚t鈥檚 intrinsically a safer opioid than oxycodone.鈥�

But because buprenorphine is classified as a 鈥減artial opioid agonist鈥� while oxycodone is a 鈥渇ull opioid agonist,鈥� many doctors and nurses have erroneously assumed it is less effective at treating chronic pain. The medication faced policy barriers as well, requiring a special license to prescribe it. 鈥淎t the time, only 13 percent of clinicians across the country had this special license鈥攁nd only 5 percent prescribed it,鈥� Jones said.

The whole thing frustrated her. If buprenorphine could be effective at fighting pain without the addictive side effects, why weren鈥檛 more clinicians rushing to use it?

More than a decade into her career, what Jones found when she looked at her profession was widespread confusion about the best course of action when it came to prescribing medications, especially for patients with a substance use disorder. There just didn鈥檛 seem to be any clear answers. So in 2019, she enrolled in the PhD program at the Connell School of Nursing, determined to find those answers for herself, and for her fellow practitioners across the country. 鈥淢y biggest impetus in getting my PhD was feeling like there wasn鈥檛 any evidence to guide me,鈥� she says. 鈥淎nd no one else knew what to do either.鈥�

When Jones arrived at 51茶馆, her passion for figuring out how to deal with issues of chronic pain and addiction was immediately apparent to her advisor, Connell School Professor Lisa Wood-Magee. Impressed by Jones鈥檚 deep knowledge about the issue, Wood-Magee encouraged her to apply for a National Institute of Nursing Research grant. Despite having no prior grant-writing experience, Jones scored a perfect ten on her application, and became 51茶馆鈥檚 first nursing doctoral student to be awarded the prestigious grant.聽 鈥淎 lot of the time my experience with Katie was just standing back and letting her go for it,鈥� Wood-Magee said.

Connell School Dean Katherine Gregory marveled at Jones鈥檚 accomplishments. 鈥淜atie is remarkable,鈥� Gregory said. 鈥淪he came to us with incredible strengths鈥攕he鈥檚 hardworking, persistent, and had clinical expertise and experience. And behind every great scientist, there鈥檚 a team of mentors, and I think Katie would say she really benefited from the excellent mentorship from Lisa Wood-Magee and others that she had during her research education.鈥�

For her dissertation, Jones explored the social and psychological factors that affect cancer patients鈥� experiences with pain. 鈥淚 was trying to understand what is so different about cancer from other chronic pain,鈥� Jones said. She found that patients could experience the same physical pain differently depending on other aspects of their life. 鈥淚t鈥檚 the tissue damage,鈥� she said, 鈥渂ut it鈥檚 also the isolation, loneliness, and trauma.鈥� Those psychosocial factors, she found, can often lead to substance use disorders. 鈥淲e found that even people who had been through treatment and were 鈥榗ured鈥� from cancer still used opioids at about five times the rate of people without cancer,鈥� she said. From interviews with cancer survivors, she learned that doctors often just defaulted to prescribing opioids for pain鈥攔ather than trying more holistic treatment methods such as acupuncture, meditation, cognitive behavioral therapy, or less addictive medicines that target nerve damage.

And for those cancer patients who already had a form of opioid use disorder, Jones said, 鈥渢here were no real strategies. If you had a patient in front of you with cancer and opioid use disorder, it was like the Wild West. From patient to patient, clinician to clinician, across the country, there were no guidelines.鈥� In an effort to create some, Jones cold-called another researcher, Jessica Merlin, a medical professor at the University of Pittsburgh who was also working on the issue. 鈥淚 could tell right away she was smart and inquisitive and cared about research that would change patient care in a positive way,鈥澛� recalled Merlin. So she invited Jones to join a project in which they presented national experts in palliative care with hypothetical scenarios involving patients experiencing chronic pain. Some of the patients had past substance use disorders and some did not, while some had more time left to live than others. Merlin and Jones asked the clinicians what they would do in the various scenarios.聽The results, which were published in a 2022 paper in the American Medical Association鈥檚 influential JAMA Oncology medical journal, were at times troubling. The experts, for example, often counseled patients against entering addiction treatment programs because of the difficulty of coordinating visits to licensed clinics. That outcome pointed to a need to reform the way methadone is delivered for substance use treatment, Jones said, in order to make it more accessible to cancer patients who need it.

The experts also seemed unsure how and when to prescribe buprenorphine, and were reluctant to prescribe the drug even in cases where people were abusing opioids. In some cases, they stopped prescribing it even when patients wanted to continue with it. 鈥淭hat was really worrying for us, because why would you stop a life-saving treatment?鈥� Jones said. She and Merlin concluded that there is an overall lack of education about the drug. 鈥淲hat we鈥檙e seeing is that people are worried whether it鈥檚 strong enough to treat cancer pain,鈥� she said, 鈥渆ven though the literature shows us that buprenorphine is just as effective as other opioids in managing chronic pain.鈥� Patients with a short time left to live may be treated with opioids, but Jones believes that those with more time would be better served by buprenorphine in order to minimize the chances for addiction.

Doctorate degrees in nursing may be something of a rarity these days鈥攆ewer than eight hundred are earned each year鈥攂ut Wood-Magee said the patient-centered approach Jones demonstrates in her research demonstrates why they remain so important. 鈥淚n the basic sciences and medicine, it鈥檚 often about the disease, and not the person,鈥� said Wood-Magee, whose own background is in molecular and cellular biology. 鈥淣urses have an understanding that a lot of other professions don鈥檛. They should be the ones leading these big research teams, because they have the holistic knowledge that is needed to answer these very big questions.鈥�

Jones now sees patients in her VA clinic one day a week, managing perhaps twenty patients at any one time, in addition to advising the wider palliative care team in weekly meetings. She recalled a man she鈥檇 seen two days earlier who had started feeling pain in his belly on the golf course, and was diagnosed with advanced liver cancer. She sat with him and talked about both physical and emotional pain as he took the diagnosis in. 鈥淚t was just devastating to him and his wife,鈥� she said. 鈥淚 think what he really wanted was to be heard and understood.鈥�

In talking through his situation, Jones found that he had a history of alcohol use disorder, and was reluctant to take any medication for pain. She was able to send him home with a low-dose buprenorphine patch as a safer option, with a follow-up visit to check on progress. Another patient she saw the same day didn鈥檛 have any history of substance use, and only intermittent pain, so she prescribed oxycodone, which he could take in a pill as needed, giving him more flexibility.

The bulk of Jones鈥檚 time these days is spent on research and education projects related to pain management and substance abuse. Last year she, Merlin, and other clinicians published a paper in the New England Journal of Medicine that highlighted the challenges in managing methadone while undergoing cancer treatment through the story of 鈥淢r. C鈥濃�攁 composite of patients. He had to wake up at 5:30 a.m. to drive to the methadone clinic to receive treatment at 7, followed by an hour-long drive in the other direction to receive chemotherapy at 9 and radiation at 11. As he became sicker, the process became like 鈥渏uggling two-full time jobs,鈥� and he began suffering, missing methadone appointments and developing cravings for opioids, and falling down while waiting in line due to dehydration. 鈥淓very palliative care clinician has a Mr. C,鈥� Jones said.

Because many methadone clinics are for-profit, they don鈥檛 get paid as much when people don鈥檛 visit in person, and they decline to give patients medicine they can take at home if they don鈥檛 have a perfect attendance record. That policy can be unfair to patients whose treatments for chronic illnesses such as cancer often must take place elsewhere.

In January, the Biden administration changed the methadone treatment regulations to make it easier for clinics to prescribe take-home medication even for patients without a perfect record, though not all states have approved the changes. And in 2023, a new law also removed the requirement for a special license to prescribe buprenorphine, removing a major impediment to prescribing the drug for chronic pain. Many clinicians, however, still lack experience with buprenorphine. Jones has become an evangelist for the cause, creating an online toolkit for clinicians around the country to use as a guideline to prescribing the medication. She and Merlin wrote an informational blog about buprenorphine for the nonprofit Center to Advance Palliative Care that became one of the organization鈥檚 most-read posts, and they鈥檝e since created a workshop for the organization including a webinar aimed at educating clinicians about the drug. So far the six sessions have all sold out.

In one recent webinar, some three dozen clinicians attended, many of whom had never prescribed buprenorphine at all. 鈥淲e often think about substance use, and then we think about chronic pain,鈥� Jones told the group. 鈥淏ut what we鈥檙e arguing is for you to think about it as a complex, integrated cluster, and to treat both conditions as a unit, rather than try and separate them.鈥澛� She and Merlin launched into a detailed description of buprenorphine鈥攈ow it works, various doses, and the best mechanisms for delivery in different situations, including a skin patch, a tablet that dissolves under the tongue, and a film applied to the inside of the cheek. As they talked, the chat lit up with questions.

鈥淲e鈥檙e trying to create ambassadors throughout the country who can become skilled in managing people with substance use disorder and serious illness,鈥� Jones said. Along with sharing knowledge and expertise, she also hopes that she can change attitudes by reducing some of the stigma around substance use and seeing its treatment as part of the overall treatment of a serious illness.

鈥淭here鈥檚 something so satisfying about seeing patients, because the difference you are making for them is so tangible,鈥� she said. 鈥淏ut the reason I got my PhD was that I felt like I was only able to have an impact on one patient at a time. Now it feels like I can have a much broader impact.鈥澛�