Palliative Care Puts Patients' and Families' Needs First
Palliative Care team (from L to R): Saba Safari, RN, NP, Rosalind Faraone, LCSW, Sandy Trieu, MD, Stephanie Harman, MD, Judy Passaglia, RN, MS, Patricia Dwyer, LCSW, Janet Rodriguez, RN, NP, Joshua Fronk, DO
Palliative care focuses on alleviating the stress and suffering of serious illness wherever a patient is along the continuum of medical care, from newly diagnosed to end of life. At its core, palliative care cuts to the heart of patient and family-centered care.
The issues that arise when a patient is seriously ill are not limited to physical symptoms or disease pathology. "There are also issues in how patients cope with having a disease, the emotional and psychological stresses that come with that disease, and how their families are affected by their suffering," said Stephanie Harman, MD, the medical director for the Palliative Care Service at Stanford. "In palliative care, we address the patient as a whole person with their family. Our job is to align the care to what the patient desires."
When to call palliative care
Ideally, the palliative care team is called in when a patient is having a tough time coping, not just when a patient is dying. The palliative care team sees patients all along the continuum of their disease, sometimes very early, such as when someone is starting a bone marrow transplant, or later, when a patient's disease changes, and they and their clinicians have to readdress treatment options and goals.
"Having palliative care along the continuum allows for more support for the patient and family going through this process," said Harman, the Arnold P. Gold Clinical Assistant Professor of Medicine at Stanford. "It is giving patients access at the right time to the right services based on where they are in the course of their disease."
Communication is at the core of palliative care
One of the palliative care team's specialties is facilitating difficult conversations with patients, getting down to what's important to a patient and their family and helping align their care to achieve what's important to them.
"Part of our involvement is giving patients and families a safe place to talk about difficult things," Harman said. "But we don't have a monopoly on these difficult discussions," she added. Skilled clinicians on the patient floors practice palliative care on a daily basis.
One such individual is Ashley Keiler-Green, MD, a critical care fellow just finishing up her first year at Stanford. Raised by an oncology and hospice nurse, Keiler-Green understands the value of talking openly and bringing patients into the decision-making process. When responding to a code in the middle of the night, she became aware of a patient who was clearly dying, but who had misconceptions that she would be going home and attending her son's wedding. Because of Keiler-Green's intervention and honest discussion with this patient's family, this critically ill woman got to see her son get married in her room a day before she died.
"I think as clinicians, we often want to protect patients and families from difficult news and information," Harman said. "But we shouldn't confuse vagueness with compassion. We can lead patients and families into believing assumptions that are not true, and they plan on expectations that are far from what the reality will be and they lose opportunities they may not have otherwise had. Patients make different decisions if they understand the gravity of their illness."
A multidisciplinary team of support
The inpatient palliative care team consists of an attending physician, an advanced practice nurse, a social worker, a physician fellow and a trainee in palliative care. There is also an outpatient team that includes a social worker, attending physician and advanced practice nurse that provides supportive oncology and palliative care in the outpatient setting.
At just 5 years old, the palliative care program at Stanford is still working to become fully integrated into the fabric of the hospital. Part of that integration comes from cross training. Palliative care is part of multidisciplinary and team-care rounds in the ICU and the bone marrow transplant units. Palliative care fellows also rotate through the ICU and oncology floors to spend time with the team on the floor. Likewise, the hospital's oncology fellows rotate on palliative care.
"It is vital to have that cross-pollination and exchange of approaches and training occur where people are seriously ill, such as the ICU and the oncology floors," Harman said. "We don't have a monopoly on patient suffering. Our goal is not to be involved in every case. Our goal is to have palliative care services available to all patients when they need them."
Stories from palliative care
Providing comfort and support
"We were called in when a young man was beginning a bone marrow transplant, and his transplant team thought he needed help coping with his pain and nausea. We became involved because he was suffering, not because he was going to die. Our primary role in this case was to provide comfort, and that was really important for the patient and his family. Just to have a team that looked at that as a priority alongside all of these really difficult treatments helped him understand and manage how he'd be feeling through these brutal treatments and infections. His fiancé recently contacted me years after his bone marrow transplant just to let me know how helpful our team had been. I was touched."
— Stephanie Harman
Facilitating decision-making
"We recently met with a young patient with a bowel obstruction. He had gone to the OR, but his cancer had spread throughout his intestines and abdomen, and surgeons were unable to remove the obstruction. He was having a tough time deciding whether to do chemotherapy, and his medical team couldn't get an answer from him.
When we first met him and asked how we could help, the patient started talking about his pain, so we addressed that first. The patient knew he was not doing well, and he didn't want to suffer unless it meant getting better. He said he would do chemo if it would give him quality time with his family. From our conversations with the patient, he decided to do a trial of chemo to see if it would help alleviate some of his symptoms. Unfortunately, the chemo did not help him feel better, and together with his family and his oncology team and a social worker, he chose to stop the treatment. We then helped to move him home so he could have time with his family. In this case, we just uncovered the patient's concerns and wishes to guide his treatment."
— Stephanie Harman
Having the difficult conversation
"I responded to a code as part of the Rapid Response Team to help a woman who was apparently having a seizure. She had decompensated on the floor, and her mental status and vitals had changed rapidly. After we stabilized her, I stayed in the room and talked with her husband. He told me that his wife had metastatic adenocarcinoma and that they were awaiting the results of her chemo. Their plan was to follow up in outpatient oncology after a vacation they were planning, and the patient talked about attending her son's wedding later in the year. To me, the patient looked very sick, like she was going to die, and her medical chart showed that they had stopped her chemo and were only treating her symptoms. There was a big disconnect between what was happening to the patient and her plans for going home.
I spoke with her husband that night. I was the first person to tell him clearly that his wife was dying. You have to use the word "die" with patients. You have to be clear. The husband had a lot of questions, but he was not angry about the news. If anything, he was appreciative of my honesty and thanked me for being so clear.
I continued to check on the patient and her husband throughout the night. When I returned to the hospital after a day off, I checked on the family again, and the patient was actively dying at that point. Her husband gave me a big hug. He told me that because of our conversation, his son chose to get married in his mother's room so his mom could see him get married. The whole family was present for the wedding and at the time of her death, just six to eight hours later."
— Ashley Keiler-Green, MD
By Grace Hammerstrom