What is in the Palliative Care Syringe?

Pay attention! (image only tangentially related to the post, thanks wikimedia)

Remember the landmark trial at MGH by Jennifer Temel that demonstrated palliative care for patients with early stage lung cancer not only improves quality of life, but prolongs survival? The major question we were left with, as Jennifer says quoting Diane Meier in the accompanying audio interview, is "what is in the palliative care syringe?" What exactly did they DO to improve quality of life and prolong survival?

Well, now we have some important clues. In a study published online yesterday in JAMA: Internal Medicine (formerly Archives of Internal Medicine), she mentored a junior researcher named Jaclyn Yoon to examine chart notes from palliative care clinic visits during the MGH trail. They also examined chart notes from oncologist for those times when the disease progressed.

They found:

During the first few patient visits, palliative care clinicians focused on building a relationship, treating symptoms, understanding of prognosis, and establishing preferences for information
When the patients disease progressed, both palliative care clinicians and oncologists addressed plans for end of life care, though oncologists tended to focus more on radiographic progression of disease and medical complications, whereas palliative care docs focused on coping.

This represents an important window into outpatient palliative care encounters. As I noted in the commentary, these findings are as surprising for what they include as what they do not. Some might expect that goals of care discussions and hospice would be introduced from the get go - this was not the case.

As the commentary concludes:

The focus of PC is not browbeating patients into accepting hospice and avoiding resuscitation or hospitalization, as some might assume. Palliative care is at its heart a relationship-centered profession. Palliative care clinicians build strong relationships with patients and families in the hopes of finding a way through the symptoms and distress, a way to cope with the illness experience, and a way to make each day as good as it can be. Many patients with serious illness will not have access to an outpatient PC clinician, but they will probably have access to an internist. Patients might benefit if all internists incorporated this approach, seeking supplementary training in PC. And some benefits, like survival, might be surprising.

by: Alex Smith

Practical Advice for the End of Life: A Podcast with BJ Miller

This week we talk with BJ Miller, hospice and palliative care physician, public speaker, and now author with Shoshana Berger of the book "A Beginner's Guide to the End."

As we note on the podcast, BJ is about as close as we get to a celebrity in Hospice and Palliative Care. His TED Talk "What Really Matters at the End of Life" has been viewed more than 9 million times. As we discuss on the Podcast, this has changed BJ's life, and he spends most of his working time engaged in public speaking, being the public "face" of the hospice and palliative care movement.

The book he and Berger wrote is filled to the brim with practical advice. I mean, nuts and bolts practical advice. Things like:
How to clean out not only your emotional house but your physical house (turns out there are services for that!)Posting about your illness on social media (should you post to Facebook)What is the difference between a funeral home and mortuaryCan I afford to die? …

Caring, and the Family Caregivers We Don’t See

Over lunch at a restaurant in Manhattan, my father and I talked about long-term care insurance and the emergence of senior centers and nursing homes across the U.S. that offer a variety of ethnic cuisines and cultural events, catering not only to a growing population of adults over 65, but also, to an increasingly diverse population of adults who call the U.S. their home. This conversation was different from many similar ones before it – we weren’t talking about my research; we were talking about our own lives.
My parents immigrated to the U.S. in the late ‘70s and early ‘80s, following their parents’ advice on professional opportunities that seemed unimaginable in India at the time. Although they considered moving back soon after to care for their aging parents and to raise children, they ultimately decided to stay in the U.S. As I chronicled earlier, my paternal grandparents lived with us until I completed middle school, at which point they returned to India and lived with my mater…

Top 25 Studies in Hospice and Palliative Care (#HPMtop25)

by: Kara Bishoff (@kara_bischoff )

Back in 2015 we wrote a post asking for input on what articles should belong on a list of the top 25 articles in hospice and palliative care. We decided to focus on hospice palliative care studies and trials - as opposed to review articles, consensus statements and opinion pieces.

Here’s what we came up with. It was hard to pick just 25! We highly prioritized clinical utility and tried to achieve diversity & balance. Many others are worthy of inclusion. Take a look and let us know if you have suggested changes for next year.

Module 1: Symptom Management
Randomized, Double-Blind, Placebo-Controlled Trial of Oral Docusate in the Management of Constipation in Hospice Patients. Tarumi Y et al. JPSM, 2013.Once-Daily Opioids for Chronic Dyspnea: A Dose Increment and Pharmacovigilance Study. Currow DC et al. JPSM, 2011.Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomise…

George Handzo said…

This lesson learned can just as easily guide the practice, not just of physicians, but of all members of the team (nurses, social workers, chaplains,e etc) both in the hospital and in the community.

January 30, 2013 at 12:27 PM

Kilgore Trout said…

It seems odd that the recent JAMA findings (from the original Temel Lung CA study)suggests that communication and relationship building (components of psychosocial care) is a new medical discovery that needs to be integrated and further studied.

JAMA Study Excerpt: "Further research is needed not only to determine the generalizability of the benefits of early integrated PC but also to identify the components of the intervention that might be most effective," the authors write.

We already know the benefits of early integrated palliative care and what components of interventions are most effective!
Hospice/palliative care social workers and chaplains have been providing this expert care for decades. These palliative professionals are skilled in communication and counseling and comprehensively address profound and complex needs when illness and dying befalls patients and their families. Maybe instead of embarking on a new study to study the old study, first consider the expertise of other palliative team professionals, and the quality outcomes that a team approach produces.

January 31, 2013 at 11:19 AM

Values in Healthcare said…

Thank you for your post! Glad to see discussion of the importance of relationships in healthcare, especially with patients and families. Many know this, but others don't. Relationships with compassion, respect, etc should be at the center of all care!

Our dream is to restore human values to healthcare around the world. We’re working to enhance relationships, empathy, and healing in healthcare, and created the International Charter for Human Values in Healthcare, starting with the capacity for compassion.

The mission of the International Charter for Human Values in Healthcare is to restore the human dimensions of care – the universal core values that should be present in every healthcare interaction – to healthcare around the world. http://charterforhealthcarevalues.org

January 31, 2013 at 12:09 PM

Isaac Vielma said…

During my time as a Medical Director of an Inpatient Palliative Care program the physicians were hesitant to refer due to the fear of browbeating patients to choose DNAR/DNI and Hospice Care. As the study showed, we often didn't talk about code status or hospice care. Often times it was about supporting, affirming, relating, listening and being non-judgmental. We would only address those issues at the appropriate time and by the guidance (verbal and non-verbal clues) of the patient. I've long felt that palliative care is very much like a dance. The patient leads and we follow. They dictate the speed, direction and progression of the dance. Our job is to dance along with them through their journey.

February 3, 2013 at 4:15 PM

Alex Smith said…

Hi Isaac- love the dance analogy. So well put.

Reminds me of what Porter Storey has said, "You do your dance and you walk away." His comment was about relinquishing attachment to needing to "reach" every patient or family member.

February 4, 2013 at 10:34 AM