This story appears in the Summer 2016 issue of Brigham and Women's magazine.
More than anything, Michael* wanted to go for a swim in his pond. Bedridden and in the late stages of esophageal cancer, the middle-aged musician and farmer was lowered into the pond for a final swim with the help of several friends, a harness, some pulleys, and the blessing of his physician, James Tulsky, MD.
“When they called me to ask me what I thought, I said if they could make it happen, I was all for it,” remembers Tulsky, who leads the Division of Palliative Medicine at Brigham and Women’s Hospital (BWH). “I went out to visit him shortly after and he was already entering a deep sleep. His wife gave me a tour of the farm, including the pond, a writing cabin, and a music pavilion, all of which he had built. He died peacefully the next day.”
Seizing life’s meaningful moments, opening communication, confronting fears, finding freedom from pain—these are the goals the palliative care practitioners at BWH pursue with their patients and families who are grappling with serious, often terminal, illness.
“We will move mountains for our patients,” says Jane deLima Thomas, MD, clinical director for inpatient palliative care at BWH. “We are always balancing what we see as their core needs—their symptom management, comfort, and safety—along with their priorities. If they want to get to their house on the Cape, or be close to their grandchildren, we do everything we can to help make those things happen.”
A “cloak” of care
Surrounding patients and families facing serious illness with a ’cloak of care,’ palliative care specialists focus on symptom and stress relief, whether patients are actively treating their illness or have decided to stop curative treatment.
At BWH, the palliative care consult service brings experts to the bedsides of patients with a range of serious illnesses, including heart failure, kidney or liver disease, or Alzheimer’s disease. A separate, Intensive Palliative Care Unit (IPCU) in the Dana-Farber/Brigham and Women’s Cancer Center focuses on providing symptom relief for patients with cancer.
In the IPCU, Thomas starts her morning by gathering the team—the IPCU nurse, physician’s assistant, social worker, pharmacist, and chaplain—and rounds with them to the unit’s dozen patients.
As the social worker on the IPCU team, Amanda Moment, LICSW, focuses on opening lines of communication between patients, their doctors, and their loved ones.
“Most of our patients are coming to us in a time of crisis, when they are highly symptomatic and in distress,” says Moment. “Pain can create fear and vulnerability and a sense of lacking control, but it can also create space for us to come in and guide big picture conversations about what the patient wants most, or is most afraid of losing.”
“Palliative care can’t be done by any single clinician,” says Thomas. “The entire concept is to take care of the whole person and address any sources of suffering, which could be physical, emotional, psychological, even exist.
Thomas once consulted with a patient, Ted*. On top of multiple health problems, including kidney failure, Ted had been recently diagnosed with bladder cancer. He and his wife were waiting to discuss treatment options with an oncologist. But he began feeling extreme pain and confusion, and ended up in the hospital.
“When I met him, his discomfort was so severe he just wanted to go home,” says Thomas. “I talked with him and his wife, and then with my team about getting his pain under control and making a plan for next steps.”
These kinds of conversations help patients and families see a way forward. Days after the team set his symptom management plan in motion, Ted’s pain decreased and his confusion resolved. He was comfortable and felt like himself again. With the assurance that his life would not be limited by pain, he and his wife decided to press forward with cancer treatment.
“Ted was discharged to rehab with a new confidence, even with his cancer diagnosis,” says Thomas. “He and his wife felt clearer about why he wanted to receive cancer treatment, and the circumstances under which he would want to stop. They felt more knowledgeable about hospice as an option down the road, which helped remove the stigma and fear about it.”
“We often regard family meetings as a medical procedure,” Tulsky says. “We focus on quality of life, and that means paying attention to the entire context of care and making sure our patients get the right care in the right place.”
Trading misconceptions for access
Palliative care remains a vague and misunderstood concept in the public sphere. It is frequently confused with hospice, and viewed as a choice between comfort and longer life.
Since 2010, numerous research findings have shown early access to palliative care increases patients’ comfort and satisfaction with care, and prolongs life with higher quality. Several studies have shown palliative care reduces hospitalization costs.
“As all of these interesting data points come out of palliative care research, people are becoming more excited about it,” says Josh Lakin, MD, a palliative care physician at BWH. “The general public has started asking for more symptom management and improved discussions and communication. Not just from palliative care itself, but from the entire medical system.”
Seeing how palliative care access has helped patients with cancer, Tulsky and his team want to expand their services to more patients.
“The majority of patients admitted to the Brigham have serious illnesses other than cancer, and need more symptom management and supportive communication,” says Tulsky. “We hope the Division of Palliative Medicine can work with their doctors in other specialties to enhance their care.”
A path to comfort
Thomas adds it will be critical to create a variety of pathways to access palliative care for patients with any serious illness.
“That means collaborating more with the ICUs, creating an outpatient clinic, and potentially giving patients access to home-based palliative care, which is the next frontier,” she says.
“With the dynamism, energy, and extraordinarily compassionate faculty we have right here,” says Thomas, “the opportunity for the Brigham to be a leader in expanding palliative care is like a beautiful, ripe plum that is right in reach.”
Even as it expands, palliative care will forever be rooted in life’s most intimate moments. Before Michael died, Tulsky worked with him for more than a year to treat his illness, manage his symptoms, and navigate the series of decisions that led Michael home to enjoy his beloved waters one last time.
“Historically, medicine has seen itself as a solution to disease,” says Tulsky. “What’s happened in the last ten years is the recognition that there are limits to that. We have to know how to help people who are not going to be cured. That’s still a huge part of the responsibility of the medical community, and to do it knowledgeably, compassionately, and with expertise.”
*name of patient changed to protect his privacy.