The Palliative Care Questions to Ask Every Advanced Breast Cancer Patient

Kate M. O'Rourke


April 25, 2018

Despite the proven benefits of early palliative care for oncology patients, integration of palliative care remains a challenge.[1,2] At Johns Hopkins Medicine, the TEAM approach is being used to improve oncology outcomes by incorporating palliative care in practice for patients with advanced breast cancer.[3] TEAM (Time, Education, Assessment, and Management) requires approximately 1 hour of additional time with the patient each month, focused on patient education, assessment, and management.[3]

"It is an extra hour every month, not once. [But] it doesn't have to be done by the doctor. It can be an advanced practice or [other trained] nurse," said Thomas Smith, MD, director of palliative medicine and professor of oncology at Johns Hopkins. The hour can be spent in person, by phone, or by telemedicine, but it has to be structured and include assessments, he added.

"If clinicians can't spare the time, they need to get palliative care involved," said Smith, speaking at the 2017 San Antonio Breast Cancer Symposium. He defined palliative care as specialized medical care, providing relief from symptoms, pain, and stress for people with serious illness. "Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support," he said. "It is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment."

Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

The benefits of early palliative care have been firmly established. In 6 of 13 large randomized trials, early outpatient palliative care has been shown to improve survival, and no trials have identified any harms.[1,4,5,6,7,8,9,10] Early palliative care also decreases costs, with one recent study showing that a new palliative care program at Johns Hopkins saved roughly $3.5 million on health system finances over 1 year.[11] Of note, said Smith, other studies have shown that patients who use hospice live a month longer than patients who don't use hospice.[12,13]

"Palliative care alongside usual care, with transition to hospice care when appropriate, is now the accepted best practice," said Smith, "with all evidence suggesting equal or better quality of life, fewer symptoms, equal or better survival, and less cost, with no harms—except we have to have the discussions, which can be upsetting."

As far back as 1990, the World Health Organization recommended early palliative care at the time of cancer diagnosis in patients with all stages of cancer.[14] The practice, however, was slow to catch on, and it wasn't until the landmark 2010 study by Temel and colleagues[1] that the long-held belief that palliative care was only for patients with end-stage disease was overturned.

The American Society of Clinical Oncology (ASCO) strongly recommends palliative care for every advanced cancer patient by an interdisciplinary team, concurrent with oncology care, within 8 weeks of diagnosis.[15] Smith said oncologists are uniquely situated to help provide palliative care, but there are insufficient data to show that oncologists can do this themselves with time and training obstacles. "Some of us can. Some of us will. Some of us really need help from a palliative care team," said Smith.

Refer early and often, unless you can spare an hour a month with each patient.

Smith had several key messages. "Refer early and often, unless you can spare an hour a month with each patient, because that is how much time it takes," said Smith. "Partner with a palliative care team that you can trust."

Education is key. Studies have shown that as many as two thirds of people receiving palliative chemotherapy, radiation, or surgery believe that the treatment will cure them.[16,17,18] In terms of assessments, Smith said, clinicians should use standardized assessments of patient-reported outcomes. These include evaluation of (1) symptoms through tools such as the Edmonton or Memorial Symptom Assessment Scales, (2) spirituality with tools such as the FICA Spiritual History Tool, and (3) psychosocial distress with the Distress Thermometer.[3] The Edmonton Symptom Assessment Scale asks patients to rate a number of symptoms on a scale from 1 to 10, including pain, tiredness, drowsiness, nausea, lack of appetite, shortness of breath, depression, anxiety, and well-being.

"If you don't ask these questions, you are not going to figure out what is really bothering your patients," said Smith. He pointed out that assessments need to be shared with the team so that all caregivers are on the same page.

Novel technologies can be helpful in evaluating patients. In a recent study involving patients receiving routine outpatient chemotherapy, the median overall survival was improved by 5 months in individuals who proactively reported symptoms through a Web-based tool, compared with usual care.[19] According to Ethan Basch, MD, MSc, lead author of the study and director of the Cancer Outcomes Research Program at UNC Lineberger Comprehensive Cancer Center, in Chapel Hill, North Carolina, having patients self-report their symptoms online should be considered a part of standard symptom management. "The current standard approach of symptom monitoring is reactive. We don't systematically elicit symptom information from patients to get to problems early," said Basch.

Having patients self-report their symptoms online should be considered a part of standard symptom management.

If clinicians want to provide palliative care as it is done in clinical trials, they must include a symptom assessment, spiritual assessment, psychosocial assessment, coping assessment, and goals-of-care discussion, repeated at several points.[1]

During the hour-long palliative care visit, roughly 10% of the time is spent on understanding the illness and roughly 15 minutes is spent on how patients are coping with the disease.[20] "In palliative care, it is standard practice to ask, 'How are you coping?' and then turn to the family and say, 'How are you coping with mom being so sick?'" said Smith. If an oncologist does not have established ties with spiritual care and social work, he or she should establish these relationships for counseling as required.[3]

During palliative care visits, it is important that patients be assessed for how they prefer to receive information, their current understanding of their situation, and whether they have considered any advance care planning.[3] Clinicians should frequently check in with patients on two questions: What is your understanding of your situation, and how are you coping? "Those are the two things that I do in my palliative care life that I don't do as much in my breast cancer life," said Smith.

At each scan, added Smith, clinicians should be asking patients if they would like to discuss what the results mean. "That gives them control over the information," he said. Using open-ended questions such as "What is your understanding of your illness?" can provide the clinician with important information and insight on how patients view their illness.[21]

More attention is also needed to increase patients' awareness of their prognoses; being able to admit potential life-ending illness requires direct communication by the healthcare provider.[22] In a recent study characterizing the nature of discussions of scan results, only 4 of 64 encounters included a frank discussion of prognosis.[23] Oncologists spent little time discussing scan results and prognostic implications, in favor of treatment-related talk. "We need to gently correct ... prognostic awareness. Being able to admit that it might be 8 months, and not years, is absolutely critical, but it really requires our presence, our knowledge, and our persistence," said Smith.

To remind clinicians of important palliative care questions, Johns Hopkins has developed a palliative care temporary tattoo with important palliative care questions,[21] including: How do you like to get medical information? What is your understanding of your situation? What is important to you? What are you hoping for? Have you thought about a time when you could be sicker and in need of a living will or advanced directive?

"The tattoo stays on for only about 10 days, but making yourself ask those questions will get to the heart of what a palliative care visit does," said Smith.

Smith said he starts his discussions about advance care planning by saying, "I'm worried about you, and I'm worried about what might happen in the future. I would like to talk now about where we are with this breast cancer, etc." Goals-of-care conversations led by the oncologist, said Smith, are key to advancing the prognostic awareness of the patient and family, but too frequently they do not occur or are ineffective in leading to advance care planning and appropriate planning for end-of-life care.

Johns Hopkins has developed an electronic medical record–based goals-of-care template for discussions, including several key questions about how patients like to get medical information, their understanding of their situation, and what is important to them.[24] Clinicians can complete all or parts of the form with patients and use it to ensure full coverage of important tasks, such as planning for transition to hospice and legacy work. The form can also help with ensuring that all providers are on the same page about treatment plans.

When you order immunotherapy or anytime you order sequencing, you ought to be thinking about immediate referral to palliative care.

Smith said that oncologists should start thinking about transitions to best end-of-life care when they think their patient has 6-12 months to live, to ensure a planned transition to hospice. "When you order immunotherapy or anytime you order sequencing, you ought to be thinking about immediate referral to palliative care and a hospice information visit," said Smith.

The benefits of having these conversations are many. "Patients who have end-of-life discussions are much more likely to be satisfied with their care, die at their place of choosing, and have markedly less distressed relatives," said Smith. "In fact, looking at people who use hospice, the survival of their spouse is higher. It is really fascinating."

Drs Smith and Basch have disclosed no relevant financial relationships.


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