Monday, November 13, 2017

LGBTQ at the End-of-Life: Needs and Challenges

By Vivian Lam

Holistic care is essential in the mission to fully meet a patient's needs. And a holistic perspective is the backbone of end of life and palliative care--it's the basis of having an interprofessional team that acknowledges that quality of life is multifaceted, and lives are diverse. But getting to know a patient enough to be able to be "holistic" can be difficult. And in the case of LGBTQ individuals, getting to know the patient as a whole is not only all the more important—it’s integral.

According to a 2016 Gallup survey, 4.1% of U.S. adults openly identify as LGBTQ, or around 10 million adults. Of that 4.1%, 2.4% are Baby Boomers (born 1945 to 1964), and 1.4% Traditionalists (born 1913-1945). And in order to be able to provide holistic care to LGBTQ patients, it’s important to recognize that LGBTQ individuals have specific medical, psychological, and social needs. They are more likely to experience mental health problems, due to a number of social stressors including prejudice, stigmatization, anti-gay violence, and internalized homophobia. Many are susceptible to depression, suicide, and substance abuse. And many face isolation, and difficulty accessing resources and appropriate care.

On the flipside, LGBTQ individuals are more likely to have an advance directive completed as a legal safeguard to their wishes, and are likely to have “chosen” or “lavender” families and strong community ties, and highlight the importance of including these individuals in developing a support system.

To begin to provide holistic care to LGBTQ patients, it is important to have basic cultural competency on LGBTQ people and their historical and contemporary experiences in healthcare. Though some strides have been made in incorporating LGBTQ cultural competency in healthcare training, much can be done in executing these findings in practice.  And it is very important to remember that small steps can quickly translate into big steps—starting with the basic challenges that LGBTQ patients face at the end-of-life.

Anticipating discrimination, and going “back into the closet”

Though strides have been made in fostering acceptance of and earning equal rights for the LGBTQ people, historical trauma and ongoing discrimination strongly color LGBTQ lives today. And for LGBTQ elders who lived in a period of less social acceptance, and harbor a lifetime of discrimination and negative healthcare experiences, an expectation of prejudice on the basis of their sexuality may not only detract from holistic care, but also prevent them from obtaining care in the first place.

Some feel that hospice and palliative care are not services available that are available to them, and will not understand or meet their needs as they relate to sexual orientation or gender identity. Some anticipate receiving worse treatment than their straight and gender-conforming peers. And some feel that they must go “back into the closet” in order to protect themselves from the hostility of hospital or assisted living staff and patients. And transgender individuals’ wishes to be recognized and die as their preferred gender are often disrespected.

Disclosure of sexual and gender identity can aid in providing sensitive and appropriate care, and augment the patient-provider relationship. It can also help identify potential challenges and ways to better support a patient and their loved ones. Though disclosure is ultimately up to the patient, providers need to actively foster an environment where the patien
t feels comfortable enough to disclose their identity.

Best practices for creating a safe space:

  • Place a sign that signals that your office is LGBTQ-friendly, and display brochures that are relevant to LGBTQ-health issues.
  • Review your literature and forms to ensure they have inclusive language and questions.  Add a transgender option alongside “male/female” in your intake forms.
  • Do not assume a patient’s sexuality or gender identity, and do not force a patient to disclose their sexual or gender identity if they are uncomfortable. Instead, introduce yourself with your preferred pronouns, and ask about theirs. Do not assume that a trans patient desires or has undergone surgical or hormonal transition. Make it clear that you are comfortable with their identity, and are willing to learn how to support them through identity-specific issues.
  • Try having a conversation, if they are comfortable, about their fears and needs. Be aware of the language you use, and ask about their preferred name and gender pronouns.

Ask questions like:
“Who are the most important people in your life?”
“Do you have a significant other?”
“Are you in a relationship?”
“Do you live with anyone?”
“Tell me more about yourself?”

Family, bereavement, and legal challenges

Isolation and “non-traditional” family status factor greatly in the delivery and facilitation of care. LGBTQ individuals are more likely to be single, less likely to have children, and more likely to be estranged from their birth families. Many have “families of choice” (also called “lavender families”), composed of close friends and support groups. But for many LGBTQ elders, these chosen families may be threatened by aging and illness, and face trauma from loss in the HIV epidemic in the 1980s and 1990s.

Many feel concern that their partner might not be recognized or be able to serve as their durable power of attorney for medical and end-of-life decision-making. Those without a legal partner or paperwork specifying their wishes face having family members they may not have spoken to for years making decisions on their behalf. For LGBTQ individuals, having a power of attorney in place is top priority.

And the bereaved are vulnerable to being left out of the picture altogether. Non-registered surviving partners are denied family leave and bereavement benefits, automatic inheritance jointly owned property, and may lose the right to determine funeral plans. Many experience disenfranchised grief by not being recognized as needing support, and often carry a greater care burden due to late access to care.

Best practices:
  • Ask who the most important people in their life are
  • Ensure that their partner is recognized as such and feels supported.
  • If they bring someone into the meeting that they introduce as a close friend but may in fact be their partner, emphasize that you are comfortable with their identity and are willing to support them.
  • Address legal concerns 

 A paucity of research and training

There are large gaps in the literature in regards to providing care for LGBTQ elders. There has been a general “invisibility” of LGBTQ older adults, due to lack of data collection around sexual orientation and gender identity. And most research and much of the data have been based on the experiences of white, middle class to affluent individuals living in urban areas. The majority of the reports and papers found through an online search on LGBTQ end-of-life care was from the UK and Australia.

In order to fully assess and address the issues and needs that LGBTQ individuals face at the end of life, further research must be done. And greater focus must be placed on the diverse range of experiences that make up the community.

Best practices:

  • Make an effort to educate yourself on basic LGBTQ health disparities and terminology, and how to recognize and challenge discriminatory beliefs about LGBTQ people.
  • Implement a staff training program and advocate for cultural competency in treating LGBTQ patients.
  • Encourage further research on the needs and experiences of diverse LGBTQ patients at the end-of-life.

Treating everyone the same is not the same as meeting someone’s needs. It is not so much a matter of providing equal care and avoiding discrimination than recognizing that sexuality and gender can be an important part to someone’s identity, and does impact their health needs.

Making a big impact in the end-of-life and healthcare experiences of LGBTQ patients requires both little and large effort. Providers must have an open mind, be respectful and compassionate, and acknowledge an individual’s unique life from beginning to end—the basic tenets of holistic end-of-life and palliative care.

It’s simple—but it makes all the difference.

Further resources:
National LGBT Health Education Center (Fenway Institute)
National Resource Center on LGBT Aging
SAGE (Services and Advocacy for GLBT Elders)
LGBT HealthLink
     best and promising practices for LGBT cancer patients
Creating a Welcoming Clinical Environment for LGBT Patients – Rainbow Welcome Initiative
Providing Welcoming Services and Care for LGBT People – Fenway Institute
“Hiding who I am”: The reality of end of life care for LGBT people – Marie Curie
American Academy of Hospice and Palliative Medicine’s video on providing palliative care to LGBT patients
Search engine for agencies trained on LGBT cultural competency – National Resource Center on LGBT Aging

Vivian Lam is a clinical research coordinator in thoracic oncology at UCSF, striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

Monday, November 13, 2017 by Pallimed Editor ·

Saturday, November 4, 2017

Defining Dignity at End of Life: One Question to Ask Hospice Patients

by Lizzy Miles (@lizzymiles_MSW)

I start every new hospice patient interaction with a hello. I introduce myself and then ask for permission to sit and visit. It is not uncommon for the patient to start off on guard, wary. By the time patients meet me, they have been through a lot of medical interactions. They have been asked a lot of questions.

I tell them I have just one question. I sometimes notice an exhale. Whew. She’s not going to grill me.

Dignity In Care, developed from research by Dr. Harvey Max Chochinov, starts with the Patient Dignity Question (PDQ). It is a simple, open-ended question: “What do I need to know about you as a person to give you the best care possible?”

The answer to this question will lead you to have a greater understanding of the needs, desires and identity of the person beyond their being a “patient.” There is no wrong answer to this question, despite what family members might think.

One time a patient responded with, “I am a lifelong Cubs fan.”


The nurse, chaplain and I made small talk with the patient for a few minutes about baseball, The Cubs, and a broken curse.

The patient’s wife scowled and then apologized to us. “I’m sorry, he gets off track.”

“He’s not off track,” I responded. “This is what’s important to him right now.”

What we weren’t doing was talking about his illness. He was sick of talking about his symptoms, his diagnosis, how he was feeling. For once, he wanted to feel normal.

The answers to “the dignity question” as I call it, are varied, but always telling.

The patient who told me, “I love my husband” would eat when she wasn’t hungry just to appease him.

The patient who said, “I’m precise in my care of things” wanted to know the details of every medication that was being administered.

The patient who said, “I am a good person. I try to help people” worried that every request was an imposition.

I have heard more than one patient say, “I am crazy.” It is their way of sharing that they have a certain approach to life, and they want to keep the conversation light.

One patient I met in the inpatient unit had been throwing up for days. We were having trouble getting her nausea under control. In this midst of vomiting she told me, “I’m happy-go-lucky, hopefully.”

Sometimes the patient does not want to answer the question. They will say, “I don’t know.” Depending on their tone, I might ask, “Would it be safe to say you are a private person?” If they acknowledge that they are private, then I tell them it’s good for me to know that. I explain to them that as their social worker, my number one job is to advocate for them. I tell them I will let others know they don’t want a lot of questions. Not surprisingly, when I give them “permission” to be private, they often do open up to me.

If a patient says, “I don’t know” because they are not introspective or don’t like talking about themselves, I’ll ask if they are okay with me asking their family. This opens up an interesting dialogue where the family shares about the patient in front of them. I will usually ask the patient if they agree with what their family member said.

A daughter once said, “She’s cranky” and suddenly the quiet patient retorted, “look who’s talking!” and they got into a friendly banter.

Families don’t always know how the patient would answer. Whenever possible, get the answer directly from the patient. A patient who was described as “family oriented” later woke up to define himself differently. “I am a musician,” he said.

There are times when a patient comes onto hospice minimally responsive and not able to answer for themselves. The family members’ responses to the dignity question can still be helpful.

I had one spouse who told me that her husband was extraordinarily modest. He didn’t even like to change clothes in front of her. That week, I went to the house when he was actively dying and I noted there were at least 15 people wandering in and out of the room. I provided as much support as I could, and once I was certain symptoms were under control and family felt confident in providing care, I started to say goodbye.

I sat down with the wife on the porch.

“Do you remember when you said your husband was modest?” I asked.

She nodded.

“How do you think he would feel about all the people looking at him while he was dying?”

She knew where I was going with my line of questioning. “Oh he would hate it!”

I agreed and suggested that he might be hanging on until he had privacy. I told her I knew it was a delicate situation because other family needed to say goodbye, and I would leave it up to her to figure out the best way to clear the room.

She reported later that she was able to encourage people to give him privacy, and he died that evening with just her by his side.

FOR YOU

How do you see yourself?  How would you answer the question? How would your loved ones describe you?

I told my husband about the dignity question one evening after work. I said,” I would like to think I’m happy-go-lucky.” He laughed loudly (perhaps snorted) and told me I was most definitely NOT a carefree person.

I sometimes share this story with families as a way to encourage them to imagine what the patient would want me to know (if the patient can’t speak for themselves). The question itself appears to be therapeutic as loved ones speculate how the patient would describe themselves. If multiple loved ones are in the room together, I give everyone the opportunity to answer the question and you learn about the patient and their relationship.

“He was always generous.”

“She is a gentle spirit.”

“He would give you the shirt off his back.”

“She liked strippers, booze and rock and roll.”

The way that patients define dignity is unique to the individual. If you are not familiar with Dignity In Care research, I would highly recommend the Dignity In Care website which has information on research effectiveness and an additional toolkit of questions to further explore patient needs.

Lizzy Miles, MA, MSW, LSW is still trying to figure out how she needs to project a happy-go-lucky vibe. She is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Memes created by author utilizing photos from unsplash.com
sunflowers: Brigitte Tohm
baseball: Joey Kyber
precise:  Andrea Sonda
musician: Junior Pereira


Saturday, November 4, 2017 by Lizzy Miles ·

Monday, October 30, 2017

Conference Review: 2017 Palliative and Supportive Care in Oncology Symposium - Day 1

by Christian Sinclair (@ctsinclair)

It is a testament to the growth and mainstream acceptance of palliative care, that there is a sub-sub-specialty two-day conference like the #PallOnc conference held in San Diego this past weekend. If you have not heard of this meeting yet, and the majority of your work in that intersection between oncology and palliative care, I would highly recommend considering it in the future. This is the 4th consecutive year the meeting has been held, and I applaud the commitment of the four co-sponsoring organizations (AAHPM, ASCO, ASTRO and MASCC). Kristina Newport and Shanthi Sivendran reviewed this conference for Pallimed in 2014 and it was one of our most popular posts. They went on to create the very popular Oncologist in Your Pocket pre-conference at the 2017 Annual Assembly of Hospice and Palliative Care. Clearly there is a hunger for this information!

With two-days of talks and over 150 posters, there is a lot to cover, but let me share some of my key takeaways and highlights of the symposium. For more detailed coverage you can check out the transcript at Symplur or the pallonc.org website (paywall).

The opening session focused on innovative models to integrate palliative care within oncology. Dr. Janet Bull (Four Seasons) made strong points about standardizing care, which starts by developing processes and procedures, collecting data and then using both to cycle through quality improvement. It can be difficult to take the loose, narrative approach commonly seen in palliative care and start to implement structure around the clinical visit. We want it to be patient-centered, and therefore often clinicians will allow the visit to be driven by the patient. Listening to Dr. Bull helped solidify the argument for allowing patient-centered approaches but using design-thinking to make sure that we are truly meeting all the needs of the patient, the system and ultimately ourselves (though efficiency and work-life balance)

The research presented Friday helped define what is involved with early integrated palliative care that makes it successful. Hoerger and colleagues presented analysis of palliative outpatient visits where the clinicians marked what they did immediately after the visit was done. Coping and symptom management were consistent through nearly all visits. Rapport and illness understanding were important early, where as treatment decisions and advance care planning were more important in later visits after trust had been established. While this may seem intuitive it is helpful to have more solid research behind what exactly palliative care that makes it effective.
Dr. Haider and his peers presented a detailed examination of how computers impact patient perceptions of empathy, communication and compassion. If you can take a wild guess, patients preferred the doctor in the vignette where they didn't use the computer. This seems intuitive, but again the research helps set the foundation for how we integrate point of care documentation (efficient, now bedtime charting), immediate access to scans and labs (to facilitate discussions with patients), while still being focused on the patient. Some people use scribes, other people do joint documentation with team members.
And it brought up a very palliative moment in the Q and A!
In the afternoon Sandra Mitchell (NCI) had a great session on fatigue during and following cancer treatment. While it is difficult to read some of the headers, I htink this is a smart approach to presenting data on symptom management, with green = good data, and red = less data. As you might see low-dose dexamethasone is on the red side. So maybe those of us seeing some good results from that, need to publish better data (or readdress on own biases).
One consistent theme was the importance of non-phamacologic management. What unfortunately was not routinely addressed was how to access CBT, acupuncture/acupressure, massage, psychology and others. I feel relatively lucky but occasionally frustrated at how to get my patients access to these services on a consistent basis to meet their needs. It is one thing to hear about how great they are at a conference, but another thing to get them implemented in your practice. If anyone has stories of success please share them with us!

More coverage on day 2 tomorrow!

Christian Sinclair, MD, FAAHPM is editor of Pallimed, and a palliative care doctor at the University of Kansas. He loves that next year's #pallonc conference will be in San Diego again, since that is his hometown!

Monday, October 30, 2017 by Christian Sinclair ·

Monday, October 23, 2017

Quality Improvement – The Science of Making Care Better for All

by Arif Kamal (@arifkamalmd)

It seems everywhere a person turns, there’s nonstop discourse regarding healthcare quality, particularly the relationship of meeting quality metrics to demonstrating lower costs and higher value. As palliative care further immerses itself into usual healthcare delivery, it behooves our workforce to adeptly apply quality improvement skills to translate our sense of “what is right” into the usual practice of “what is done.” Meeting these demands takes skills and practice, rooted in an evolving evidence base around quality improvement science.

It may confuse some to hear that quality improvement is derived from science. For some, quality improvement is what you call things when there’s not grant money, not a protocol or consent, the project is not publishable or meaty enough to face the feedback or scrutiny of your peers, or when there’s a high likelihood of failure. Quality improvement and “pilot” study can sometimes seem synonymous, and it’s certainly the former and not the latter when results are negative or there’s “more to learn.”

In fact, quality improvement is just as time and resource intensive as pure research, a reflection of rigor that started from the very beginning. The formative years of quality improvement science originated from the factory setting, where observers painstakingly monitored outcomes at the individual and systems level, quantified opportunities for improvement at the outcome (number of widgets) side, and changed how products are made through incentives and modifications to the environment. The origin of the term the “Hawthorne Effect” comes from just such study.

In the 1920’s, the Hawthorne Works, a telephone products manufacturing plant just outside of Chicago, commissioned investigators to experiment how to increase productivity among assembly line workers. The studies continued on for almost a decade, with small changes in lighting (brighter lighting led to more productivity), changes in cleanliness of facilities, and moving work stations around, all leading to small, time-limited upticks in production. In the end, the investigators concluded that the changes in production were ultimately more a result of the workers knowing their production numbers were being observed, than the actual interventions themselves. Though different than what the investigators had originally thought, the Effect is a powerful tool used today to motivate change. The Hawthorne Effect is why highway signs that announce the monitoring of speed by an increased police presence and overhead aircraft reflectively lead to drivers slowing down. Knowing you’re being watched changes your behavior.

From the early part of the 20th century moving forward, a robust science regarding process control, change management, and behavior change built upon the early lessons from the Hawthorne factory. We now have approaches like Failure Mode and Effects Analysis (FMEA) that try to anticipate errors or understand when future breakdowns of the system will occur. Much of this is built upon knowledge that comes from the fields of human factors engineering and industrial engineering, far away from the settings where healthcare is delivered. We also discuss the concept of “high reliability organizations” that anticipate and address opportunities for improvement within increasingly complex environments. It’s the idea that healthcare could become like nuclear power plants and the airline industry; extraordinarily rare errors, that when they occur, are industry-wide learning events. Getting there involves a focus on quality improvement science that is no less robust or meticulous than generating our evidence through clinical trials and the like. And importantly, palliative care through its entrenched ethos and culture around shaping the system to maximize patient-derived wishes, can lead the way in getting there.

To get a taste of quality improvement and its implementation in palliative care, my colleagues and I recently published an article “Quality Improvement Pearls for the Palliative Care and Hospice Professional” which the publisher of the Journal of Pain and Symptom Management has made available for complimentary download for the next few weeks.

Also, there are webinar-based opportunities to learn more about the quickly-evolving environment in palliative care quality. For example, the community-based palliative care quality improvement collaborative I co-chair with AAHPM President Janet Bull, the Global Palliative Care Quality Alliance, is hosting its Third Annual Quality Matters in Palliative Care Conference.

This free, virtual, webinar-based, half-day conference will offer complimentary CME/CNE and feature speakers covering topics related to principles of quality measurement, population health and palliative care, and what CAPC, AAHPM, and HPNA are doing to further the quality agenda in our field. The conference is this Thursday, October 26th in the afternoon. Please register at www.gpcqa.org/qmc. Even if you can’t attend live, please register to receive a copy of the slides and a recording of the presentations.

Arif Kamal MD, MBA, MHS is an Associate Professor of Medicine and Business Administration at Duke University and Physician Quality and Outcomes Officer of the Duke Cancer Institute. He is the father of two beautiful children and has learned (as the younger one is 6 months old) that sleep is a precious, precious thing and should be appreciated whenever (if ever) it occurs.

Monday, October 23, 2017 by Christian Sinclair ·

Monday, October 2, 2017

Building Certification for Hospice and Palliative Care Social Workers - Take the Survey!

by Megan Mooney

(Take the Hospice and Palliative SW Job Analysis survey before October 5th if you are a social worker. If you are not a social worker, encourage social workers in hospice and palliative care that you know to take it!)

What is Evidence Based Practice?
The Institute of Medicine (2001) defines evidence-based medicine as “the integration of best researched evidence and clinical expertise with patient values” (p. 147). According to Social Work Policy Institute (2010) evidence-based practice (EBP) is defined as the combination of research interventions, clinical experience, values, and client preference that aids practitioners in treating individuals. In social work, the consensus is that EBP is a way of practicing, assessing, intervening, and evaluating based on empirical support, which helps practitioners become more effective (Mullen et al., 2008). This approach assures that the treatments and services offered to clients will have the most effective and beneficial results mirroring what the research shows.

Why is it Important for Social Workers to Participate in Research?
To ensure the effectiveness of the social work profession, standards of social work education have been applied and implemented into accredited programs. The Council on Social Work Education (CSWE), states “Social workers use practice to inform research, employ evidence-based interventions, evaluate their own practice and use research findings to improve practice, policy, and social service delivery” (CSWE, 2008, p. 5).

Additionally, the National Association of Social Workers (NASW) Code of Ethics 4.01 Competence, states “social workers should base practice on recognized knowledge, including empirically based knowledge, relevant to social work and social work ethics” (NASW 2013, para. 39). As you can see, the Social Work field has started to increase its emphasis on EBP, by putting these standards of education and practice into place.

Has someone ever asked you how do you know that intervention that you’re doing is effective and the best one available? As competent Social Workers, we must be able to provide that answer and the answer is always “through evidence based research or practice”. As Social Workers, we make a commitment to better ourselves, the communities we serve, and to help improve the knowledge base of our field. We need to help contribute to the developing of evidence based practice. Research is vital to social work because it helps us to be effective and to provide the best services possible to our communities!

How Do We Participate in Research?
Social Workers have many opportunities to be involved in research. The NASW outlines this in their Evaluation and Research section. If you’re near an institution (University or Hospital), see if they need any help with the research they’re conducting. We can participate in online surveys (quantitative data) that helps contribute to the knowledge base of our field. We can also agree to be interviewed for qualitative data that will help researchers identify the needs of our work. This all helps to provide the best interventions needed in our areas of expertise!

We Have a Great Opportunity for Hospice and Palliative Care Social Workers to Help Right Now!
A great opportunity that social workers in the hospice and palliative care field have right now is to participate in the Hospice and Palliative Social Worker Job Analysis Survey! We do hope that you will help with this and invite your other HPM friends too. This is a wonderful opportunity to help improve our field! We only have until October 5th to complete this survey! It only takes about 30 minutes and you get entered into a drawing to win a chance to go to one of the SWHPM conferences. Here is the link: http://louisville.edu/medicine/departments/medicine/divisions/internalmedicine/hp-ja-survey

If you are a practicing hospice and/or palliative social worker, you are invited to complete the Hospice and Palliative Social Worker Job Analysis Survey, the first step in creating the certification program. Please invite other social workers you know to do so too!The survey will be open September 5 - October 5.

Megan Mooney, MSW is a researcher with the University of Missouri and leads the Pallimed Facebook efforts. She also started Death Cafe in St. Joseph, MO.

Monday, October 2, 2017 by Pallimed Editor ·

Wednesday, September 27, 2017

Palliative Care in the Time of Hurricane Harvey

by Ishwaria Subbiah (@IshwariaMD)

Trouble Brewing
Between the network news and many institutional emails on hurricane preparations, we at MD Anderson knew were in for something ‘big.’ Harvey made landfall on August 25th as a Category 4 hurricane about 190 miles southwest of Houston. The outer bands brought rain without any major disruptions to our practice. As expected, upon landfall, Harvey rapidly weakened but stalled over Texas. The subsequent two days brought a level of rainfall best described as apocalyptic. The institution’s leaders activated the ‘ride-out’ team where the core essential physicians and staff remained in-house for the duration of the disaster.

Bare Bones Palliative Care? Interdisciplinary Team of One
‘Skeleton’ staffing seemed inherently counterintuitive to the model of Palliative Care through the interdisciplinary team (IDT) of physicians, Integrative Medicine team, psychologist/counselors, social workers, case managers, and chaplains. Of course, all the bayous and retention ponds were no match for 50 inches of rain that fell in a matter of a few days. So the roles of the IDT were condensed to the Palliative Care staff who were riding out in the hospital. Our in-house Palliative Care ride-out physician, Dr. Marvin Delgado, embraced his several roles and adds how he was open with his time, and ensured that he and the patient had “the opportunity to cover aspects of symptom management, the physical, emotional, and spiritual, as well as time to discuss and counsel about what’s been happening.” Dr. Delgado adds, “As I realize that I cannot do much about what’s happening outside, but the simple fact of sitting down and listening to [the patient] helped them a lot.” Dr. Delgado goes on to reflect how striking it was that despite their own struggles and suffering, the patients were still worried about others around them; they were very open to sharing their thoughts and sentiments about the situation with him.


Multimodal Care!
Harvey became a test of a multimodal care model during any disaster (natural or otherwise). Overall the Palliative Care team cares for about 155 people (and their families) on a daily basis between the Supportive Care clinics, inpatient consult team, and inpatient Acute Palliative Care Unit (APCU). It was amply clear that access to the Texas Medical Center was neither safe nor feasible. Within our faculty and staff, several were experiencing active water damage to their homes, and many more were under mandatory evacuation orders. The remainder of us were ‘hunkering’ down at home. So how do you provide care when your traditions of practice (i.e. face-to-face encounter, etc) are simply not possible?
Soon, emails started floating around to our department mailing list – ‘my streets are flooded but I have power and internet access and can help from home.’ Faculty, fellows, nurse practitioners, and physician assistants announced their availability to help via phone. As a priority, the in-house physician for our service first rounded on the APCU patients, for whom we were the primary inpatient physicians. From their home, our medical assistant and Palliative Care fellows took charge of the department pager. They answered the calls from two sources – the inpatient consulting teams and our outpatients.

Telephone Care
As is standard practice, when the inpatient primary teams paged to report sub-optimally controlled symptoms, our responding Palliative fellows (with the assistance of faculty available via telephone) provided recommendations and, for those consult patients with the highest level of distress or a suspected toxicity, the in-house PC physicians evaluated them in person. The underlying sentiment among all in-house at MD Anderson during the ride-out was clear – this is an exceptional time and we will all deliver as effective a care as possible under the circumstances.

For Palliative Care, this translated to a level of understanding from the primary consulting teams that whereas at any other time, we as PC team would be there to evaluate most patients in person, during these times, we will get as much relevant info over the phone prior to giving recommendations to them to order and execute if they feel it is appropriate.

Outpatient Calls – more than pain!
Our Outpatients paged us, mostly concerned about the institution’s closure and their cancelled Oncology and Supportive Care clinic appointments particularly because they were due for a refill of their opioids for cancer pain. With a telephone assessment for opioid-associated toxicities and efficacy and based on their electronic medical history (in particular any prior concerns for aberrant opioid use), as a departmental decision, we transmitted an e-script for a 2-4-week supply of their controlled substances until their next visit. By the 3rd day, a Palliative Care clinic crew of 4 physicians and 2 nurses assembled in the clinic to individually call each patient who had contacted us as well as those with missed appointments. Patients shared the overwhelmingly positive, qualitative response to have a clinician directly speak to them during this time of distress.

Uncertainty ruled in every aspect of life
Beyond pain or whichever symptom prompted the patient to call us, the universal sentiment we observed was distress of varying degrees as a direct consequence of uncertainty – an uncertainty extending through nearly every aspect of their life from disease management to their own homes/lives to the state of their medical care providers’ facilities. Regarding their cancer treatment, questions ranged from the cancellation of a scheduled infusion, the consequences this delay and interruption to this treatment and disease outcome, and the limited communication (since the clinics were closed) during the early period of the worst rains when it was not clear when the clinics and infusion centers will be back up and running. Patients were also concerned about their home (flooding, electricity, flooded cars, access to food and water) as well as access to care (flooded roads at home or near the hospital, most pharmacies being closed, major hospitals being inaccessible even through 911). Ultimately, the amalgam of all these elements of distress presented with a greater need for Supportive Care.

“An Army of People”
On Monday August 28 and Tues August 29, when the medical center was inaccessible, we had an in-house ride out team led by Dr. Marvin Delgado and our Chair Dr. Eduardo Bruera as well as 6 faculty, 4 NPs/PAs, and 4 fellows (many of whom had sustained damage to their own home) provided telephone care for all new inpatient consults, our current inpatients, as well as clinic patients.

The Supportive Care “Army of People” (as our Chief Medical Officer Dr. Karen Lu phrased to NPR) was out in full force in support of our patients, families, and consulting teams during these trying times! By August 30, when the rains slowed, water in the Texas Medical Center receded, and a handful of roads became accessible, the larger IDT recognized the distress that disruption of a person’s scheduled care can cause. The Supportive Care team mobilized 12 Palliative Care physicians along with our department administrator, 2 Integrative Medicine physicians, 2 Rehabilitation physicians, 8 nurse practitioners/physician assistant, 4 Palliative Care fellows, and 2 psychologists/counselors – all of whom came into the hospital during the ride-out phase voluntarily to take care of the comprehensive needs (both physical symptoms including management of pain, nausea, vomiting, shortness of breath and psychosocial symptoms including high level of distress, anxiety, depression) of over 100 inpatients and their families, in addition to calling many more clinic patients with a management plan during the outpatient closures.

“It was a call, a necessity to help!”
Ultimately, we as Palliative Care practitioners observed that the uncertainty and associated distress of a large scale disaster can be mitigated to an appreciable extent by the presence of the medical team and sense of ‘normalcy’ brought on by the care of the palliative care provider, and, knowing that in due time, the logistics of missed appointments, infusions, etc. will be sorted out. (Indeed, in the subsequent two days, the hospital leadership and clinic teams effectively rescheduled a majority of missed visits and infusions including the medical teams opening full clinics on Saturdays and Sundays.)

As the rains began while he was home, Dr. Delgado reflects on the compelling overwhelming sentiment to come to see patients. He notes, “I believe that people with advanced illness are people who are having their own Harvey in their lives and on top of that they are experiencing something else that is happening outside that they cannot really control. It was a call, a necessity to help!”

Ishwaria Subbiah, MD, MS, is a medical oncologist and Palliative Care physician at the University of Texas MD Anderson Cancer Center. When she's not chasing after her 3 young kids, she and her husband can be found at the opera (sans children, of course).

Wednesday, September 27, 2017 by Pallimed Editor ·

Tuesday, September 26, 2017

Lorazepam, Haloperidol, and Delirium

by Drew Rosielle

JAMA Internal Medicine has published a double-blind, randomized, placebo-controlled trial of adding lorazepam to haloperidol in patients with advanced cancer and agitated delirium. (We had a heads up about this trial because it was presented at ASCO earlier this year.) If there ever was a sort of consensus in HPM about how we should be treating delirium, my sense is that it’s been shattered by the recent RCT of low-dose haloperidol vs risperidone for delirium in Australian palliative care unit patients, showing those drugs worsened delirium symptoms. So, it seems like we should all see what we can learn from this newly published investigation.

The authors note that to be best of their knowledge there has never been a RCT involving a benzodiazepine compared with placebo for delirium. The one kind of famous (if you are a delirium geek) trial which looked at benzos, which was the trial I was directed to when I asked why not benzos for delirium when I was training, involving a 3-way comparison of lorazepam, haloperidol, and chlorpromazine for delirium in hospitalized patients with AIDS, and registered 6 (!) patients in the delirium arm (lorazepam patients did worse). It had no placebo arm.

In fact, there is a lack of high quality drug trials in the delirium world which involve genuine placebo arms, ie, an arm in which there was no active pharmacologic treatment. I have wondered if we’ve made a huge mistake by doing trials which assumed haloperidol was the standard of care, without robust data to actually support that, and so have just done comparison trials of haloperidol with other agents, or like this study, a benzo or placebo added to haloperidol, when then underlying question, does haloperidol or other antipsychotics actually help (compared with placebo) remains open. See for instance this recent review for a nice summary of what’s out there (noting that this even predated the damning low-dose haloperidol/risperidone/placebo trial): it’s not convincing, it’s not the sort of thing you’d read and say the book is closed on this question, we can no longer have equipoise about comparing antipsychotics to placebo in delirium trials.

I was going to get to this point later in the blog post, but I realize I’m already there, so I’ll say it now: delirium is an international health crisis, it is real, it can be devastating (lead to permanent cognitive changes), leads to far worse outcomes for our patients (longer hospital stays, not being discharged home), costs billions of dollars, sucks shit for the patients and families going through it, and we don’t have a real inkling about actual, effective drug treatment for it. There are some inklings about chemoprophylaxis, but nothing definitive. Multidimensional prevention programs seem good, I like those, I’m 100% for those, but we need a lot more. If we can do a bloody RCT of simvastatin for chemoprophylaxis of delirium, surely we can do large, multicenter, patient-diverse (dementia, surgical patients, ICU patients, advanced cancer patients, dying patients), high quality, placebo-controlled trials of a variety of drugs, drug-classes – especially testing the ones people are actually using, and dosing strategies to see if there are any effective disease-modifying agents out there!

Which is why I’m just delighted our friends at MD Anderson did this study as it was well-done, although small, and adds to our understanding.

The subjects (N~60) were patients at MD Anderson’s palliative care unit; all had advanced cancer, and all had agitated delirium (RASS score of 2 or more; it looks like they changed the protocol to 1 or more mid-study – there’s a lengthy supplement involving the protocol changes). All had received haloperidol as a primary treatment for delirium – it looks like they used a protocol of 2 mg IV q4h scheduled + 2 mg IV q1h as needed. The patients were followed with q2 hourly RASS assessments and then received 3mg IV lorazepam or placebo if they continued to have an agitated RASS (mean RASS score prior to being the study drug was 1.6). Importantly, the patients also received a 2 mg prn dose of haloperidol as well regardless of which group they were assigned too. Of note, all the patients studied had delirium for at least 2 days prior to enrollment – these were patients with persistent delirium who didn’t get better quickly after routine interventions. After enrollment the median observation time was 6.4 h (after a median of 6.4 h, the patients had an agitation episode leading to being given the study drug). Median haloperidol doses prior to receiving the study drug were 5-7 mg in the prior 24h.

The primary outcome was RASS score 8 h after the single dose of study drug.

The results are fascinating as hell. To begin with, lorazepam looks really, really good when you are looking simply at the primary outcome of reduction in the RASS score. The RASS score went down rapidly as you’d expect – it was markedly lower in the lorazepam group by half an hour – and remained markedly lower than the placebo group at hour 8: -2.5 for lorazepam, -0.5 for the placebo group (all this was very statistically significant by all the usual tests). Of note, -2 on the RASS is light sedation (briefly awakens with eye contact to voice, but less than 10 seconds); -3 is movement or eye opening to voice but no eye contact.

Ie, these patients were pretty sedated, and much more so than the haloperidol/placebo-only patients.

One may also observe that the placebo patients having a RASS of -0.5 at 8 h means the median state of the placebo patients at 8 hours was something between ‘alert & calm’ and ‘mildly drowsy.’

Got that? While the RASS was a lot lower in lorazepam, the placebo patients’ median RASS could be considered, in fact, a really good outcome, and arguably, a better outcome, than the lorazepam group.

Of course, the reality is much more complicated than that (most delirious patients just don’t go back to normal and stay there), but it’s a good reminder that when using something like the RASS as an outcome, lower is not necessarily better: 0 is normal, and for many patients would be the most desirable outcome. (Notably, the authors address all this explicitly in their discussion.)

Figure 2b in the study is probably more helpful in understanding what happened to these patients than the actual primary outcome graph. What you can see is that at 8 h, in the lorazepam group, basically half the patients were deeply sedated (RASS -3 or less), and half were mildly sedated. In the placebo group, about a third were agitated, and the most of the rest in the mildly to moderately sedated range. If you want, you can actually see what happened to individual patients in the supplement online.

In the secondary findings, they note that many more nurses and caregivers in the lorazepam group than the placebo group judged the patient to be comfortable after the study drug was administered (~80 vs ~30%). The lorazepam group also had fewer ongoing doses of rescue medicines also. Median survival for both groups was ~70 h. I.e., you can essentially understand this to be a study of patients with terminal delirium.

What does all this mean?

It means that lorazepam effectively and rapidly sedates people, better than haloperidol, at the doses studied.

We’ve discussed this on the blog a little before, but this study helps us think about delirium and delirium outcomes better - what outcome we are actually aiming for in these patients. As I implied in the opening discussion of this blog post, I myself am at a point at which I do not consider there to be any active, disease-modifying drug treatment for delirium that I can get behind. By disease-modifying I mean drugs which would return patients to a more normal state of consciousness (i.e. push people closer to 0 on the RASS), and/or reduce the duration of delirium, and/or its long-term adverse outcomes. I think there is hope for antipsychotics, especially used in higher doses than the Australian study, but I don’t think there are any available data which convince me these should be a routine part of our care for delirious patients. We need well-powered, meticulously designed, placebo-controlled, and multi-institutional studies of haloperidol/other antipsychotics.

Until then, it’s just hope, and I honestly don’t know what to do.

I want to be clear, though – with the above I am talking about disease-modifying treatments for delirium. We clearly have, however, rapid & effective ways for reducing the distressing behaviors of agitation by sedating patients.

And I think it’s important that we keep in mind there is a difference between these two goals (sedation vs disease-modification). For our patients near the end of life sedation is often appropriate & acceptable. For some of our patients and their families it is in fact desirable - as this study showed, caregivers as a whole really preferred the moderately to deeply sedated state lorazepam gave these agitated, dying patients. It’s what I would want for myself, or my close loved ones, when close to death.

Sedation however is just not a ‘treatment for delirium,’ in the way that I used to hope low-dose haloperidol was.

Lorazepam has had a bad rap for ‘delirium’ historically. All of us have seen patients become agitated after getting it. Undoubtedly it is a common cause of delirium in hospitalized patients. While I don’t have any data to support this claim, I think much of the bad rap comes from patients who were given small doses of lorazepam, anxiolytic doses, leading to confusion and disinhibition. They weren’t given sedating doses of lorazepam, which is not a hard thing to do, and quite predictably sedates most people. To me, what this study does is help clarify that lorazepam very much does have a role in agitated delirium in patients near the end of life, when the immediate therapeutic goal is sedation. When we do it, however, we should do it right, and use the 3 mg dose like they did in this study, after of course clarifying prognosis and treatment goals with appropriate surrogates.

Tuesday, September 26, 2017 by Drew Rosielle MD ·

Monday, September 25, 2017

Moving From Research to Implementation to Research in Palliative Care, Part 1

by Christian Sinclair

In 2003, I began my hospice and palliative medicine (HPM) fellowship in Winston-Salem, NC. I was a solo fellow in a new program, and as luck would have it, I had loads of time to dedicate myself to learning. Since my wife, Kelly, was beginning her pediatric emergency medicine fellowship in Kansas City at the same time, I only had my dog and my fellowship to worry about. I always enjoyed reading articles and imagined how it would apply in my own practice. But when it came down to it, I was never really able to implement much of what I was reading, let alone have the numbers to benchmark against the research.

Fast forward to Spring of 2016. With years of experience across multiple care settings, I finally had an opportunity to implement research tools into everyday clinical practice by using the Edmonton Symptom Assessment Scale (ESAS) in each visit and tracking how patients do over time. I had used the ESAS in a few visits over the years, but could never seem to use it reliably at every visit with every patient.

At KU, we have been using a modified ESAS (with Mild, Moderate Severe) on the inpatient side for a long time, but never the numbers-based ESAS that would be most applicable to research. In practice, my symptom assessments were always driven more by the narrative of the patient, winding indirectly as the patient told their story. I never pressed hard on getting the mild, moderate, severe directly from the patients mouth, but would interpret their story into the scale and document it. Eventually I would get a comprehensive view of symptoms and make a good clinical plan, but I was never going to be able to use that to demonstrate quality nor publish research.

Even admitting this publicly, has taken me some time to do. I figured that everybody was already getting patient-reported outcomes. Frankly, it feels kind of embarrassing to admit. But as I talked to more people, I realized that other HPM clinicians were also not able to apply tools like the ESAS universally. Sure they might get few numbers or severity scores, but to do that at EVERY visit and for EVERY patient, that takes more than just clinician will. It takes a system-based approach to change. And that is not easy.

So in 2016, I talked with the outpatient nurse navigators, Amy and Wendy, and I asked them to help make sure that EVERY patient at EVERY visit was getting an ESAS form and that we were documenting it in the chart. They were both game, which I look back on and count my blessings. In all my previous attempts, when moving from research to implementation that culture change step always worked for a week or two and then regressed to the baseline. Someone gets too busy, or behind and then the standardized thing you are trying to do feels like 'extra work' for no good reason.

To help ensure our success, we made it a focus to talk about the ESAS at the beginning of the clinic day, in between patients and a debrief at the end of clinic. At first, our language was probably inelegant as we introduced the ESAS concept. When people rebelled against 'one more form' or 'hating those damn numbers', we initially backed down, but we persisted and it paid off, because we refined our language and we discovered how to overcome the hesitation of our patients. We helped our patients see the ESAS numbers as a demonstration of their voice and experience. After one interesting conversation with a patient, we began to call these numbers 'our palliative care labs' because 'no blood draw is going to tell me that your nausea was awful last night.'

It took a while but we also recognized that just 'getting the numbers' was not enough. Going back  to get these numbers after the visit was over and the plan was made was showing the patients that the symptoms were not necessarily driving the plan. So we adjusted and worked to make sure the ESAS was one of the first things we discussed with the patient, which in turn became the spine of the visit and therefore drove the plan.

Once we began to get consecutive visits with ESAS scores, we were able to show the patients their numbers over time. The feedback was tremendous in demonstrating that we cared about their symptom experience, and as we have become more facile in applying the ESAS we have noticed the objections fall greatly.

And now we have lots of ESAS numbers over lots of visits, but (and this is a BIG BUT) they were all buried in the narrative/free text part of the chart. So we needed to find a way to get this data exported from the Electronic Health Record. I'll share how we did that in part two tomorrow, because when I tried to figure out how to accomplish that, there was no guidance online I found helpful. My hope is that these stories of my clinical transformation from research wanna-be to providing the founding blocks of research and quality improvement may help someone else see that it is possible.

If you want to join in the conversation, this Wednesday we will be hosting the September #hpm Tweet Chat on the topic of "Moving from Research to Implementation to Research in HPM." #hpm Tweet Chats are held on the last Wednesday of the month at 9p ET/6p PT. Sign up on hpmchat.org to be updated of the monthly topic.

Christian Sinclair, MD, FAAHPM is immediate past president of AAHPM, editor-in-chief of Pallimed and a palliative care doctor at the University of Kansas Health System. If he isn't reading about HPM research, you can find him reading board game rules.

Monday, September 25, 2017 by Christian Sinclair ·

Wednesday, September 20, 2017

Preparing to Show Up: Writing Practices that Serve

by Jennifer Wilhoit

Several months ago I wrote a piece for this blog about nature practices we can do in hospice settings, and when preparing for visits with families and people who are dying. I stressed the vital importance of self-care as we serve individuals with such acute and ever-changing needs. I also reminded the reader that we do not engage our hospice work in a vacuum, but as ordinary humans ourselves with the vagaries of everyday life pressing in on us. We show up to our families and friends; we show up to those we are called to serve in hospice contexts. But how well do we remember to show up to ourselves with sustained attention, presence, deep awareness to physical, emotional, mental, and spiritual needs before we burn out? How well do we attend to ourselves on a daily basis so that compassion fatigue does not catch up with us?

I have been a hospice volunteer for nearly twenty years, while also serving the deep needs of people in transition through my private professional practice as a spiritual ecologist/author who guides individuals and groups through healing, nature-based writing support to meet their unique needs. What I’ve learned through my work is that showing up in a deeply present, engaged, dynamic manner is not only essential for those I serve, but also crucial for myself. We need to maintain a daily connection to fluidity in our lives, being nurtured, inspired, and open to insights. One way I have learned to do so for myself and for my clients, is through writing. So this second article I’m offering in this series looks at simple writing practices that serve both ourselves and others.

Essentially, the practices that follow can be:
1.) rejuvenating,
2.) quick and convenient,
3.) private and sacred,
4.) process-based rather than outcome-driven (and sometimes messy).

We can do any of these practices without much preparation in a moment when we feel depleted, enervated, or in need of clarity.

As I wrote in the first article of my series, these practices are not intended as a panacea, but rather as touchstones of writing that sustains us. These practices can also be used, with modification, directly in our daily interactions with those we serve. I recommend opening up a pause in your schedule and routine. I have done many of these within moments of my next client appointment, or around the corner from the next hospice family. I do them in my car, on my lap on a park bench, in the bright early dawn at home, just before tucking myself in bed at night.

All of these small, simple acts can restore us, thus allowing us to really show up to ourselves as well as to those we serve. I offer them in three categories: practices that nurture, practices that inspire, and practices that offer insight. The most important thing to remember is that these are intended to be for you. There is no standard of quality, or prescription for “good writing.” Any writing will do. This is about process.

Writing to Nurture
For you:
  • Journal about something that adds pleasure to your life.
  • Make a list of activities that help you feel a strong sense of well-being. Select one to do this week.
  • Take five minutes at the end of every workday to quickly write about tense situations from that day.
For those you serve:
  • Offer to help a patient write a letter to a loved one.
  • Suggest free-write journaling to patients, friends, or family as a means of self-care.
Writing for Inspiration
For you:
  • Write a poem. Or handwrite an inspiring poem by someone else.
  • Take a beautiful quotation and post it near your work area, carry it in your bag, or place it on your dashboard.
  • Write out some prayers, mantras, or meditative phrases that help center you.
  • Take your pen and paper outside to a comfortable place in nature. See what arrives on your page.
For those you serve:
  • Offer blessing cards to people you frequently encounter at work. These can be as simple to make as writing one affirming word on a small piece of colorful card stock (i.e., “peace,” “comfort,” “blessings,” “warmth” …”).
  • Share a short piece of beautiful writing with a coworker, family, or patient.
Writing for Insight
For you:
  • Free-write for fifteen or twenty minutes about possible solutions to a problem you face. Do not edit your writing. Allow any possibility (even outrageous ones) to show up on the page.
  • List for yourself the most impactful hospice situations you’ve faced in your career.
  • Write down a few ways that you can use writing to be more effective at work.
  • Write down a story about a time you felt especially motivated.
For those you serve:
  • Write down for family members a short task list or patient care suggestions.
  • Offer families a blank journal/notebook in which friends can record visits, share memories, or paste photos.
The work we do on behalf of others—even out of passion and clear calling—does require a lot of us. Please try these easy practices. Their power lies in repetition, hence the word “practice.” Test out one on a daily basis; or try several over the next week. Modify them to suit your work schedule. Most of all, adapt them to best meet your individual, nuanced, fluctuating needs from moment to moment.

So many blessings to you as you journey through your inner/outer landscape in service to the families who so very much need you.

Jennifer J. Wilhoit, PhD is a writer, spiritual ecologist, & longtime hospice volunteer. She founded TEALarbor stories through which she compassionately supports people's deep storying processes. She lives on an island in the Pacific Northwest. You can find her on Twitter at @TEALarbor.

All photographs in this story are copyright @TEALarbor Stories.

Wednesday, September 20, 2017 by Pallimed Editor ·

Monday, September 18, 2017

“Going Palliative” is Not a Thing

by Staci Mandrola

I love the segment on Last Week Tonight with John Oliver called “How is this still a thing?” His snarky Britishness targets everything from the Sports Illustrated Swimsuit issue to ‘Why do we dress up as other races?’ The skits start out funny but leave you questioning and unsettled.

I hope “going palliative” ends before it shows up on “How is this still a thing?” How do I know "going palliative" is a thing? The phrase is popping up in the academic medical center where I practice palliative care. [And many other hospitals too - Ed.] PT/OT has signed off patients who have a palliative consult ordered (not completed). MDs and APRNs call to ask why their patients are still receiving disease-directed treatment when they “went palliative” last week. Nursing staff asks if they need to continue accuchecks because Ms. A is “going palliative.” Social workers ask why Mr. C hasn’t transferred to the hospice inpatient unit because he “went palliative.”

Aaarrgghh.

“Going palliative” became a thing because hospice became a bad word. Hospice is a synonym in the hospital for dying that makes patients and healthcare professionals upset. We are Americans and we battle through adversity. We praise John McCain for his fighting spirit that will help him beat his cancer. Then we temper the language of courage because we know that none of us will ultimately win the battle. In our hospital, palliative has become a four-syllable bait-and-switch for hospice. And now they have figured it out. When you’re “going palliative”, people use it as code for hospice.

Nope.

Hospice care is for patients who request primarily comfort focused care with the desire to remain in a home-like setting and avoid a medicalized death while having expert management of distressing symptoms. They choose to elect their Medicare Hospice Benefit which is predicated on a physician certifying a prognosis of less than six months. They and their loved ones receive equipment, medication, psychosocial/spiritual care, nursing care and 24-hour support that is a phone call away.

Palliative care is for patients with any prognosis. It can be hours, but it is just as likely to be years. It runs right alongside disease-directed care. Our palliative team consulted on a twenty-year-old battling opioid addiction who needed treatment of severe headache, nausea and dizziness after a motorcycle accident. Our team consulted with a ninety-year-old man who wanted full disclosure of the risks, benefits and alternatives to an open aortic valve replacement. He is alive five years later.

Palliative care manages distressing symptoms at any stage of life and illness. Palliative care provides social, emotional and spiritual support to patients dealing with serious illness and their families. Palliative care helps patients determine what gives their lives meaning and how available medical treatments support or prevent them from continuing to make that meaning.

Palliative care is not an "either/or" choice. It is a “both” choice.

And yes, palliative care may still recommend hospice care when it is appropriate based on that patient’s goals and prognosis.

Why not change our name to “quality of life” care or supportive care? Eventually, healthcare professionals would ask why Ms. A needs accuchecks because she is “going quality of life” or “going supportive.”

“Going palliative” is not a thing. Most palliative care teams won’t employ John Oliver’s brand of snarkiness. But if we don’t continue to educate our colleagues, “Going Palliative-How is this still a thing?” is right around the corner.

Please visit PalliativeDoctors.org for an in-depth look at palliative care, hospice care and the team approach.

Staci Mandrola (@drstacim) is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes about cardiology and sometimes palliative care issues at Dr John M.

Monday, September 18, 2017 by Pallimed Editor ·

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