Monday, July 13, 2020

Prioritizing in Palliative Medicine: Why Quality of Life Suffers with Racism

by Michelle Christopher @michellethedoc and Sonia Malhotra (@SoniaMKhunkhun)

The silence was palpable. Two of us continued to speak about our concerns about the way Black lives were treated and how important it was to address these concerns among us for the betterment of our patients. If we couldn’t understand this among colleagues, how would we ever understand what our patients, a predominantly Black population at a safety net hospital, went through?

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As the COVID pandemic started and we saw the first surge of patients flood our hospitals, we watched our patients, colleagues and broader community come together to share stories and experiences. After asking patients how they were coping with the anxiety that social isolation and fear of infection brought, our patients would often thank us for holding space for them to speak on these challenging times. Each week, our colleagues would gather to share the high and low points of our week, often focused on how the pandemic was affecting us personally and professionally. Our multidisciplinary team would speak openly about feeling empowered at times and discouraged at others when attempting to serve the complex needs of our patients, whose families were being ravaged by this virus. The connectedness felt with our patients and colleagues during this time was an inspiring reminder of how open communication and a sense of community is integral to sustaining collective physical, mental and spiritual health throughout a pandemic.

A few weeks later, we noticed another global response in the form of a civil rights movement for racial justice in response to the murder of George Floyd. The feeling of connectedness subsided and was swiftly replaced with tension and uncertainty of how to speak with each other about racism and how it affects the health of our patients and us.

I don’t see color,” were the words our colleague used as protests broke out about the injustice faced by George Floyd that ultimately led to his death. We knew our colleague was concerned and well-meaning when stating she saw everyone the same. However, we wanted to hear that she saw color and acknowledged this as an important part of the beauty of our individualism as well as the cause of injustices faced. It was not uncommon for us as Palliative Medicine physicians to address death. The manner in which Mr. Floyd’s death occurred, however, was a tragedy that stuck with many of us, especially those of us who identified as persons of color. To see a man treated less than how an animal would be treated made us worry about our patients, friends, colleagues and our own children who could (and probably would) one day be targeted by the systemic racism that led to Mr. Floyd’s death.

It was hard to imagine how people didn’t see color. As brown women in Medicine, we didn’t have the luxury of not seeing color – it was something we had to contend with on most days. However, these experiences didn’t compare to that of our Black friends and patients who experienced far greater injustices due to their color. These experiences included one of our Black friends carrying her badge and stethoscope everywhere so if stopped by the police, they knew she was a working professional and didn’t assume otherwise. Another of our colleagues in Medicine, a young Black man, often spoke about his experiences with being pulled over by police and having a gun pointed at his head. The luxury afforded to our white colleagues was not one that persons of color had – the ability to not see color. And as we looked at our colleagues during that conversation, we noticed the only people speaking in the room were those who identified as persons of color.

It made us realize as physicians in one of the largest Palliative Medicine programs in the Deep South, that we needed to do better. EVERYONE NEEDED TO DO BETTER. As Palliative Medicine clinicians, we pride ourselves on communication skills and quality of life. How could we attend to this with our patients if we were not attending to this in our own backyards and with our colleagues? Seeking to understand the disparities faced by our own colleagues could only help us understand some of the disparities faced by our patients including lack of access to opioids, maltreatment when seeking opioids, medical mistrust which often led to prolongation of interventions not promoting quality of life, a reluctance to seek medical care and often a reluctance to seek hospice care when appropriate.

The prospect of discussing racism with our colleagues and patients can be daunting. However, for those of us practicing Palliative Medicine, we are no strangers to having tough conversations. In fact, we can utilize Palliative frameworks to approach conversations around race and inequity. Some steps to take toward this include:

1) Asking permission to start a conversation about racism, an often triggering or uncomfortable subject for many.

2) Offering a safe space for patients to share how racism might be affecting their access to healthcare and quality of life including physical and/or mental health.

3) Providing space for colleagues to share how racism has impacted their own personal and professional lives.

4) Normalizing conversations around racism for multidisciplinary teams in the contexts of collaboration and professional growth and for patients in the context of psychosocial stressors.


Starting these important conversations within our teams can help us better understand how to align with our Black colleagues to change a system that has not historically welcomed nor encouraged their professional upward mobility. Similarly, this open communication with patients provides opportunities to improve the medical and psychosocial support we as Palliative Medicine teams can offer our most vulnerable patients.

In these unprecedented times, we as Palliative Medicine clinicians have a unique opportunity to utilize our communication skills to lead discussions on racism for our colleagues and patients. Similar to how our field prioritized serious illness and end of life care, we need to prioritize changing patterns of silence and inaction that have led to the current injustices and health disparities our Black/Indigenous/Persons of Color (BIPOC) colleagues and patients are facing. It is time for us to collectively use our voices, our time and our training to unite in support of our patients and colleagues and to proclaim Black Lives Matter.

For more reading material, the following sites have excellent information:

https://www.nationalpartnership.org/about-us/racial-equity/racial-equity-reading-and-learning-resources.html
https://www.racialequityinstitute.com/rei-blog

Michelle Christopher, MD is a palliative medicine physician at University Medical Center, a safety net hospital in New Orleans, and an Assistant Professor with Tulane University School of Medicine. She enjoys cooking Sri Lankan food, exploring the cultural and culinary wonders of New Orleans, and traveling.

Sonia Malhotra, MD, MS, FAAP is Director of Palliative Medicine and Supportive Care at University Medical Center, New Orleans and Tulane School of Medicine. She loves cooking, reading and the arts which include a passion for dancing. In her past, she was Captain of her college’s Bhangra and Hindi Film Dance teams.


Monday, July 13, 2020 by Pallimed Editor ·

Saturday, May 30, 2020

I see you. I'm grateful.

by Holly Yang (@hollyby)

Thoughts as I drove to work at the hospital today:

For people and families who stay 6 feet away and wear a mask, buff, or bandana when they work out near others, enjoy busy outdoor spaces, or walk their dog, I see you. I’m grateful.

For grocery, retail, postal, delivery, restaurant and all other essential workers who take care of us with careful hygiene, clean spaces, and by showing up and being professional despite encountering lots of stressed out people, I see you. I’m grateful.

For good citizens who are kind and respectful to grocery, retail, postal, delivery, restaurant and all other essential workers, and those who stand with them against abuse, I see you. I’m grateful.

For people who check in on their friends and neighbors who are high-risk for COVID, or support those who need help due to illness, financial distress, mental health issues, or all of the above, I see you. I’m grateful.

For parents trying to work, teach their kids, and provide a safe and happy place for them despite the disruption of the pandemic, I see you. I’m grateful.

For those of you who have learned how to bake bread, planted a garden, created art, performed music, and found small ways to restore a sense of expectant hope in spite of the chaos, I see you. I’m grateful.

For those of you who are graduating, who are starting a new job or making a pivot, or embarking on anything new in this difficult time, I see you. I’m grateful.

For those of you who volunteer at food banks, deliver food to the homebound, donate blood, foster kids, support nonprofits, participate in research, help animal rescues, or find other ways to give despite the uncertainty in your own life, I see you. I'm grateful.

For first responders and people who work in hospitals, nursing homes and care facilities, hospices, and people’s homes… for caregivers of all kinds who risk illness to continue their critical role, I see you. I’m grateful.

For those speaking up and advocating for communities of color and residents of nursing homes who have experienced the disproportionate burden of illness and death during this pandemic, I see you. I’m grateful.

For the broken-hearted who are separated from loved ones, those who worry for the sick, and people who grieve those who have died of COVID or other causes, I see you. I hurt with you, and hope you find comfort.

For those who feel hopeless, guilty, fearful, angry, or who can’t sleep because of the stress of illness, loneliness, job loss, financial difficulty, or the deep uncertainty we live in, I see you. I hope you find peace and support.

For everyone who just wishes things were “normal” or at least less uncertain, and who feel restless and frustrated, I see you. I hope you discover ways to find joy while keeping our communities safe.

For all of you doing the best you can each day to get by with compassion for yourself and others, who make mistakes and try again with large or small selfless acts for the good of our community, our nation, our world, I see you...and I am so incredibly grateful.

Originally published on Twitter and reprinted here with permission.

Find more posts by Holly Yang on Pallimed here.

Holly Yang, MD is a palliative medicine physician at Scripps Health. Passionate about hospice and palliative care, communication skills, medical education, and increased access to health care

Saturday, May 30, 2020 by Pallimed Editor ·

Thursday, April 16, 2020

National Healthcare Decisions Day in the Era of COVID

by Emily Riegel (@emriegel)

“Why did I keep stressing what was and was not normal, when nothing ... was?”
-- Joan Didion, The Year of Magical Thinking

“Certainty? In this world nothing is certain but death and taxes.”
-- Benjamin Franklin

In normal times, under non-pandemic circumstances, yesterday being April 15 would have marked the United States’ traditional Tax Day. With one certainty, taxes, already rescheduled, we know that we are not in certain or normal times. This year, the novel coronavirus pandemic elevates the immediacy of that other certainty: death.

Since 2008, April 16 is designated as National Healthcare Decisions Day (NHDD). According to The Conversation Project, “this day exists to inspire, educate and empower the public and providers about the importance of advance care planning.” It is a day that people are encouraged to think about things such as living wills, or advance directives, or durable power of attorney. It is also a day for people to simply begin the conversations about how they want life to look even in the face of death.

It is in the particulars of the way that the novel coronavirus behaves, infects, and manifests in us that further raises the urgency to pay attention to advance care planning. By now, it has been widely reported that this virus can strike people of any age, and create a critical illness scenario in an unexpectedly short timeframe. People have heard about ventilators, life support, acute respiratory distress syndrome (ARDS), and other aspects of medicine often reserved for the intensive care units and the people who work in them. People have heard about families not being able to physically come to the bedside to visit their ill or even dying loved ones. People have heard about potential ventilator shortages or lack of intensive care resources needed to try and offer life support and stave off the effects of this virus.

People have heard a lot about this virus, and a lot about its dangers, and many feel stricken powerless. “There’s nothing I can do,” is a thought that enter people’s minds and, like the inflammatory cascade the virus sets off in the lungs, a cascade of anxiety or other emotions is set off.

What if there is something you can do, though? What if, despite all of your hand washing and mask-wearing and social distancing you still get sick. What if, despite access to the best health care and medical professionals you still get even more sick.

This is where many people will stop thinking further, will look away from this thing that is so big and so scary, and wrap themselves in a sort of denial.

But this is right where you can also win back control.

Yes, despite all the things you think you are doing right and all of the best medical treatments available to you, there is a chance that you might get coronavirus and be one of the people whose body will not outlast it.

Take a pause here and look that right in the eye. Let yourself sit with it. Let yourself feel that sink in, as scary it feels.

Now, step back from it, and realize that right now, in this moment, you are okay. You are alive.

And now, knowing that this virus may be your life’s end, but also knowing that you are currently well and able, what you are looking at is the space and time of possibility. The possibility to discuss and determine what matters to you if your life might be limited and how you would want those last days or hours to be.

At times, this is a very practical set of decisions: do I want to be on life support until my body stops despite everything being done to try and save it, even if it might cause discomfort or distress? Do I only want life support long enough for my body to show whether or not it can overcome and recover from this virus, but if my body is telling my doctors and nurses it will not recover, then let the life support stop so I may exit in as natural a state as possible? Do I not want life support started, at all, so that I may be as comfortable and in as natural a state of being as possible should I exit this world?

Sometimes these decisions become more layered with personal practicalities: Who do I want to be at my side if they only let one person come to me as I die? How do I want my family to be made aware of my condition, and do I want to have them virtually present on a phone call or video call if I am dying? What things do I want to make sure people know – the passwords, the account numbers, and also the parts of love and forgiveness and acceptance I want them to have of me?

These aren’t easy questions to answer, and the answers are never the same between any two people. The answers are often not even the same for the very same person depending on the circumstances and any other conditions or factors that might influence their likelihood of recovering. One person might say, “if I ever have a severe head injury I would not want to be kept alive with life support, but if I need life support to try and survive coronavirus then I want it used until the very end.”

People might, perhaps even ought to, consider making one set of plans and directives “in the event of coronavirus,” but another set for “all the other things that might befall me.”

There is also the matter of practical limitations that this virus puts on options. We know that large rooms full of family members surrounding a bedside, singing hymns or laughing at family stories – which all of the times I have witnessed I have said “this is a beautiful way to die—are simply not going to be possible if the culprit of coronavirus. We know that funeral traditions and ceremonies are not going to be the same. We know that this virus will take lives, and will rob people of the idyllic death and their families the gentle closure that we all hope for.

Yet, there are still ways to try and salvage something peaceful and loving from this death. Some people might decide that, rather than wait for their breath to be taken and their time to be short to try and share their feelings with people they love, they might write letters now (here’s a secret: letters will keep, and regardless of when they must be read, they will always be treasured). They might make phone calls now, to say something even as simple as “I need you to know I love you, and I always want you to remember that.” (here’s another secret: loving words always keep in the heart, and will always be treasured as well).

Author and physician Ira Byock has offered a simple set of “The Four Things That Matter Most” to provide a framework that simply but full encompasses what we all want to hear and what we all want to say: Please forgive me. I forgive you. Thank you. I love you. Even if you say this to someone, with no other explanation, they will remember it and cherish it.

Other guidance and resources exist for walking through these decisions. The Conversation Project (www.theconversationproject.org) has a number of tools, ranging from ways to get conversations started to actual documents and state specific information. They have added COVID (coronavirus) specific pieces as well.

The fact is, despite it being the certainty we all have ahead of us, no one wants to think about death. The fact is also that, despite what Mr. Franklin said, there truly is only one certainty and none have yet found a way to elude it, regardless of how much they try to deny it or avoid it or pay or pray or delay their way out of it. It is this ominous reminder of our fragility and mortality that is helping unsettle all of us right now, but there is also still opportunity for finding peace now and in the longer term by addressing advance care planning. It is a gift to yourself, and an act of love to offer your family and the people who care about you who will still be able to know they are following your wishes, eased of that burden, whenever your death arrives.

Emily Riegel, MD, is a physician who spends a lot of time thinking about stuff.

Thursday, April 16, 2020 by Christian Sinclair ·

Wednesday, March 18, 2020

Delivery of Effective Telehealth



Palliative Care Colleagues,

At MGH, we have been learning a great deal about the delivery of effective telehealth in the palliative care setting through our multi-center PCORI REACH PC trial of standard in person palliative care vs telehealth palliative care. We are happy to share with you some of what we have learned in case it may be useful to you and your teams who may be asked to conduct virtual visits in the context of mitigation related to COVID-19. We have found that telehealth can lend itself well to the important work that we do. Below you will find some of the resources we have used to train and support clinicians in this study. Feel free to use them in anyway that would be helpful to you.

REACH PC April Newsletter

Telehealth Visit Outline

Vicki Jackson, Jennifer Temel, Joe Greer and the rest of the REACH PC team

Wednesday, March 18, 2020 by Pallimed Editor ·

14th Annual Pallimed Party (aka Un-Meeting)

by Christian Sinclair

Update 3/19 1300 CT - Here is the link to sign onto the Slack platform for the Pallimed Un-meeting. It is open to all, so please remember it is a semi-private (aka semi-public place.) Yes you can share with other hospice and palliative care colleagues. The official hours are 5p to MN ET, but people may be in there before or after, so feel free to chat with them. Zoom video chat, and games will be later in the evening. Schedule forthcoming.

Old post below

Well, I know we all wish we were in San Diego learning from each other, seeing old friends, and making new ones, but the fact is we are not doing that. I still want to honor the spirit of the annual Pallimed Party, even though throwing a party does not feel like the right optics. So let's call it an un-meeting.

So how will this work? I'm not quite sure, so bear with me. It is going to be kind of experimental so if being an early adopter is your thing, I totally get it if you are out. But a small group of us are going to try to do something virtually. It will primarily consist of the online platform Slack and Zoom, with a couple of other add-ons. So how do you sign up? Well we are still working that out, but I wanted to get this out to the people on the email list today. So bookmark this page and keep an eye on our accounts on Twitter and Facebook for more info.

And check out #hpm chat tonight on Twitter at 8pm CT if you need some bonding with colleagues right now!

by Christian Sinclair ·

Tuesday, March 17, 2020

The Voice and Role of Palliative Care in the Era of COVID-19

by Suzana Makowski (@suzanakm)

The guidelines outlined in the recent letter co-sponsored by Pallimed and Geripal serve as important reminders of key messages for clinicians: social distancing, handwashing, use of personal protective equipment to help flatten the curve of viral spread, adhering to protocols about screening, testing and even triaging.

I would advocate for another layer of engagement in this effort. Palliative care as a specialty is uniquely positioned to address the people who are likely to be disproportionately affected by the disease: the chronically ill and the aged. After all, this population is the demographic adult palliative care clinicians see frequently.

There is a likely double risk to this population – first from the virus itself. While the overall mortality rate of COVID19 is likely to hover around 1-2%, the mortality rate for people over 80 has been reported to be 14.8-21.9%, for patients with cardiovascular disease 10-13.2%, diabetes 7-9.2%, pulmonary disease 6.3-8%. The second risk is from the triaging that will occur if indeed the burden to the US health system is even half of what is predicted.

In this second scenario, hospitals, ICUs, will be overflowing with cases, as reported currently in Italy. The number of hospital beds per capita in the US is far less than those in many other countries. In Italy, ventilators are considered to be gold. Triaging is occurring, with an aim to prioritize intensive care, ventilator utilization for patients most likely to survive the infection, rather than those who have the greatest likelihood of a poor outcome. News articles are telling stories about older people and those with chronic conditions, being sent home. The implication is they are left alone, without resources.

As Dr. Kathy Kirkland, Chief of Palliative Care at Dartmouth Hitchcock Medical Center notes, “decision support both for individuals and also for the organization if they are in the position of deciding how to allocate scarce resources is critical in times like these, and making good decisions in the face of uncertainty is one of our areas of expertise.” There are people who will choose not to be intubated, and they likely need to know , what might they can expect. ‘No care’ should not be their perception as the ‘other option’. As palliative care experts, it is incumbent on us to define what the alternative will be.

Social distancing means providing alternatives to testing in hospitals and getting supportive care in hospitals. Visiting nursing agencies around the country are training nurses to test patients in their homes. Supporting these agencies, as well as engaging hospices to help optimize symptom management at home is crucial.

Aligned with all of this, ensuring patient’s care wishes are known and documented is perhaps more critical than ever. A fear I have heard is the perception that discussing code status will equate with no treatment or triaging out of care. I understand this fear. I remember recoiling with horror upon reading the New York Times Magazine, and then hearing the keynote at AAHPM annual assembly outline the horrific and difficult decisions made at Memorial Hospital post Katrina. Patients with DNR orders left aside or euthanized. Thankfully now POLST orders allow for distinction between code status from intensity of treatment preferences. And comfort should always be provided.

Our voice about how to help make these decisions, along with ethicists (many of us are both) can change the dialogue of triaging this pandemic. We can honor a patient’s wish to be DNR with intubation by asking of their wish, and in doing to perhaps help alleviate some of the anticipated strain on access to ventilators and non-invasive ventilator support, while actually also ensuring the patient still receives care and treatment.

Palliative care, often in partnership with the work of home health agencies and hospices is leading the innovation in telehealth to enhance care at home. Already, in the early weeks of March there has been an upswing in use of telehealth among palliative care clinicians. Patients are asking for alternatives to clinic and hospital visits – wisely, and our field is responding.

We learned at CAPC in the fall of 2019 about colleagues using encrypted conference lines to facilitate the visits, even if formal telemedicine programs are not available to a group or institution. Honestly, we have for years held family meetings where family members who are out of state or out of country join the meeting via cell phone, FaceTime, WhatsApp, Skype, or another similar program. Now the process is going to be more formal. What patient encounters can we do in this manner, compared in in the patient’s room? In some ways I can engage in a more personal way using video conferencing where my face, my expressions, my non-verbal cues can be seen rather than my body hidden from within the confines of an N95 mask and goggles, or powered air purifying respirator (PAPR).

Patient education and caregiver support is another area of our expertise. But now we need to educate and support more people. Our specialty has also been a leader in use of social media for collaboration and education of peers. How can we build on this movement and provide a platform to share best practices with lay caregivers, as well as the aides and nurses in long term care facilities who have not learned the tricks of our trade?

You know all this – but what do we do differently?

For all the strengths of our specialty, there is one area we are generally no too familiar with: the step to be proactive. We tend to be the specialty to respond when all else fails. But now, we have to step in early.

To flatten the curve of this disease, we have to use all these tools and skills in the following strategic way by partnering with our organizations, regional, and state task forces to:

1. Define processes and interventions to keep people home who would prefer to avoid hospitalization.

- POLST allows patients to choose to receive full interventions, or some, or comfort. It is not about absence of care. How can we help patients make their wishes known now, without fearing being triaged away from care they would want?

- We must support VNA and hospice agencies in their efforts to screen, test, and treat patients at home. Partnering with them in expanding telehealth visits, patient and staff education about symptom management, and other creative initiatives should be considered.

2.Being a strong voice, along with ethics, in defining and clarifying the processes of triaging patients when resource allocation is slim.

- At the bedside (or via telehealth) – we are well suited to facilitate these discussions, and support families through the tough choices, especially if a true choice is available.

- In the boardroom – we cannot allow the alternative to ICU to be ‘no care.’ If a patient with a chronic illness is dying of COVID19 complications, we know how to alleviate their breathlessness, nausea, fear, abdominal pain better than just about anyone. Those protocols need to be at the table.

- Perhaps the triage can happen before the hospital, in the community, with optimal care there. We need to be the interdisciplinary voice to facilitate the possibility of this partnership and coordination of care. We do it every day in discharge planning. Now it is time for us to bring it to the intra-organizational level.

3. Use our foundational principles.

- We have multiple frameworks for dealing with crises – Maslow’s hierarchy of needs, biopsychosocial approach, 8-domains from EPIC, etc., and a recognition of as well as embedded process of interdisciplinary collaboration like few other groups in healthcare to address not only the medical and physical needs of patients and families, but the full catastrophe of this pandemic.

- We have the voice and practiced reflect to collaborate with people who see challenges from differing points of view presenting a variety of solutions.

- We can help our health system understand how to collaborate with the wisdom embedded in our communities – not only the doctors, nurses, social workers, and chaplains we often work but even beyond. It is time to expand our interdisciplinary team. How wide? It’s your decision, based on your community.

We are called to step up, not merely to participate in the rules and recommendations recommended by the epidemiologists, infectious disease experts, and others but to come to the table with ideas and perspective to mitigate the extent of the possible challenges and alleviate the suffering our communities are about to experience.

Lastly, I do wish to address another concern. Like just about every physician and nurse, healthcare professional, we are called to step in when times get hard. There is a temptation to be a hero or even martyr of some sort. We like to be close to our patients, to hold their hands, to share a hug when needed. But now is not that time. We have to find other ways of leaning in, lending strength, being present with, other than physical closeness. For many of us, this will be hard and even feel as though we are failing our patients, or part of our own sense of purpose. The greater good must prevail right now. Remember music can touch a heart from a distance. Your skill in listening and being present can also transcend distance.

Suzana K. Everett Makowski, MD MMM CPE FAAHPM FACP comes back after a long hiatus to contribute to Pallimed again. She currently is Chief of Palliative Care at Exeter Health Resources, a community health system in New Hampshire. Having grown up internationally as a citizen of Brazil and the US, she has a passion for inter-cultural communication and collaboration in palliative care. Other areas of interest include complexity science and positive deviance, lean and culture change, leadership and innovation.

She can be found on Twitter @suzanakm


For more posts on COVID-19, click here.
For more posts on Emergency Preparedness, click here.
For more posts by Suzana Makowski, click here.
Check out the Pallimed COVID-19 Resource page here.

Tuesday, March 17, 2020 by Pallimed Editor ·

The Dizzying Experience of Healthcare in the Time of a Pandemic

By Lyle Fettig @fettiglyle

Check out the Pallimed COVID-19 Resource page here. - Ed.

I love the letter co-published by Pallimed and Geripal about COVID,and you should read that too. As an erstwhile (for now) Pallimed contributor, I thought I'd toss in my two cents with some additional thoughts/reflections based on week 1 of preparing for the COVID pandemic as a palliative care physician.
Over the last week, I've operated mentally in most of these lanes:

1. Primary prevention and public health: Through extensive advocacy for social distancing and widespread testing. I have talked about it with my patients and my own family and friends. This also included persistently calling governmental officials, pulling my sons out of school, writing letters, and re-entering social media after an over two year hiatus

2. Assessment of patients with suspected COVID-19, like a person I've been following for 4-5 years who had pneumonia last year and called with complaint of a cough. The usual clinical reasoning of the scenario was complicated as I tried to balance the desire to get him evaluated with the public health considerations.

3. Management of mildly ill confirmed cases and mitigating the public health risk. Haven't dealt with this yet. Just waiting for the first call on one of my high risk clinic patients to have this. I know that even if they have mild symptoms, they might progress to lane 4. It feels unfair to think that an emerging infectious disease would take any of their lives.

4. Management of seriously or critically ill patients who might die. We've spent a lot of time with our critical care colleagues over the last week, swiftly trying to figure out what we would do with a "surge" and how it would change our usual collaboration, which is robust and well established. Enter the age of inpatient teleconsults, including a first: A surrogate asking me if he could email me a photo of himself so I could see what he looks like.

5. Worst case scenario of resource allocation issues: We hate talking about this, but it might happen, and we have to face it and be prepared.
It's dizzying to think about all of these lanes, on top of the usual issues our patients and teams face. Lane 4 and 5 are scary enough to serve as motivation to put a lot of attention into lane 1. Even though our ICU is a place with plenty of windows and sunlight, for some reason, I imagine lane 4 and 5 as a dark windowless place without walls, just a massive ward full of despair. It's enough to move any of us to tears and action.
I've found it helpful, in conversation about the pandemic, to identify which lane we are talking about at that moment, especially with respect to lane 4 vs. 5. In lane 5, there will be factors out of our control that determine whether patients get what they need. Routine palliative care practice (fueled by extra coffee and fewer administrative meetings) will serve our patients and their families well. Under any circumstance, we will do what we can to support shared decision-making, even if there are factors out of our control (as there always are).

Here are a few thoughts as we enter the new week:

Let's keep advocating in lane 1 while we prepare
It's surreal to see cars on the road and just feel, well, disturbed. After I finished pumping gas today, I wiped the handle off with Chlorox and went onto the next pump to wipe that one down too. (What have I become?) We are still woefully under testing for SARS-CoV2. Still some people think this is a nothingburger. Continue to educate patiently and figure out what's hardest for them about social distancing, and empathize. I'm struggling with it. I've been avoiding touching my family, changing clothes in the garage before entering, etc. It's for the birds.

Remember the concept of mortality salience and terror management theory
I'm scared. For myself, for my own health. It's tempered by probabilities, but you know, anecdotes. I'm scared for my family's health, and my parents are hunkered down, not even allowed to touch their mail. For the health and comfort of my current patients and their families. For the suffering that our new patients in this time period of isolation. Loneliness is already an epidemic, and the pandemic will amplify this. "Comfort and company" is essential to the end of life experience, as one of my mentors Greg Sachs likes to say. The thought of having a large number of people dying in uber-isolation, swimming in PPE, without their families.

I know I'm not alone. I've talked to colleagues about the three levels of fear: for our patients, personal, and professional. Everyone is walking around with extra fear.

What does evidence for Terror Management Theory suggest about what this will do to us? When people are confronted with their mortality, there's evidence to suggest they act in heightened ways consistent with their own values. (There was the famous study where judges handed out worse punishments for criminals after being reminded of their own mortality) It may make us more protective of those values as well. In stressful times, there's more likely to be tension about little things. Pause and make sure you're not actually on the same page about the values. In times like this, there may be uncertainty about the best means to accomplish certain goals. It helps to solidify agreement about the goal or value itself. "What we both value is..." This is the VitalTalk "align" statement from REMAP. It works for us as well as our patients and families.

Don't let perfection be the enemy of the good

Remember the secret sauce of palliative care

What's the secret sauce? There is more than one ingredient, but in addition to all the skilled professionals from various disciplines who bring compassion and persistence to care of individuals, I think the sauce is Relational Coordination. Timely, accurate, frequent, and problem solving communication that is oriented around shared goals, shared knowledge, and mutual respect. Lean on these in the days and weeks ahead: With teammates, colleagues, hospital leaders, and most of all, patients and families.

Relational coordination defines the collaboration between palliative care and critical care at many places, and I can't imagine my career without this collaboration. I have a deep admiration for the critical care physicians I work with, many who have become friends over the years, sharing in the care of some of our sickest and most vulnerable patients and their families. Much has been written about avoiding war metaphors (with cancer and such), but I'm setting aside my pacifist ways for this virus. We're going to war now, locked arm and arm against this tiny alien and the cascading effect on individuals and society. The relationships built between colleagues will help us find our way through.
Let's save as many lives as we can and palliate this broken world along the way.

Flatten the curve, but when it hits, charge up the hill.

Source for image 1: Meredith MacMartin
Source for image 2: https://heller.brandeis.edu/relational-coordination/

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

For more posts on COVID-19, click here.
For more posts on Emergency Preparedness, click here.
For more posts by Lyle Fettig, click here.

by Lyle Fettig ·

Friday, March 13, 2020

A Letter of Support For You and Thoughts About COVID-19

Co-published March 13th on GeriPal and Pallimed

Dear Hospice and Palliative Care community,

We are sad we cannot be together this year at the Annual Assembly and deeply concerned about the growing risk of the novel coronavirus. We want to send you a bit of encouragement, and some thoughts on how we can take care of ourselves, our teams, and our community in the setting of this new pandemic.

We have always “punched above our weight” as a field, and the secret to that has been hard work, community, and being smart.

We don’t have to tell you to work hard. You and your teams know how to do this.

1) Start social distancing from others (except patients) now, wherever you are in the country. While we realize this is a stronger recommendation than currently being asked for by many public health entities, we are doing so in the interest of health care workers and patients

--COVID-19 is spreading rapidly, sometimes with minor or no symptoms, with serious impact to healthcare systems worldwide. The exponential growth in cases in China, Italy, and South Korea has overwhelmed the healthcare systems, and has affected our patient population most seriously - the chronically ill and older adults.

--We need to be ready and able to respond when the time comes. We will be exposed to the COVID–19 virus, and we cannot afford to lose our hospice and palliative care clinicians to isolation restrictions or illness, especially given the workforce shortages many of us face already.

--Stay away from public gatherings like movies, sporting events, concerts, the theater, houses of worship and other places where people assemble. Try to participate in these from home via electronic means, if possible. Talk with your spiritual leaders about making services available via streaming tech, for example.

--Attend all meetings electronically unless physical presence is absolutely necessary. Replace non–essential meetings with email or other asynchronous communications,

--Eliminate all non–essential travel, and

--Protect yourself at work using PPE and rigorous technique. *Reminder of how to safely don and doff PPE here

2) Follow all local, state and national guidelines for COVID-19. This is critical as there are regional differences. However these hold true.

--Wash your hands or use at least 60% alcohol hand sanitizer

--Avoid touching your face. (Holly finds this impossible, so she wears her hair up and bobby pinned normally, to avoid itching her face and tucking her hair behind her ear constantly.)

--Stay home if you are sick, until the symptoms are gone for at least 24 hours. (This is hard as we have been trained to just work anyway. Don’t do it. Stay home.)

--If you are exposed and/or have COVID-19 symptoms, you should isolate at home for 14 days. If you think you should be tested, make sure you call ahead and know how your region is handling testing for health care workers. (You should have received copious emails from your institutions on this. If not, contact your institution's occupational health team or COVID response team for local instructions on how to access testing.)

--If you have traveled to or had a layover in any of the 5 countries (China, Iran, Italy, South Korea, or Japan) then you need to stay in isolation at home even if you are asymptomatic. Note these countries may change after this is originally posted on Mar 12, 2020.

--See CDC for the latest guidelines: www.coronavirus.gov

--Wash your hands the right way. (Yeah, we said it already).

3) For hospices and home-based palliative care:

--NHPCO has an excellent resource page for that includes CDC guidance for hospices on COVID-19 infection control and prevention : https://www.nhpco.org/coronavirus

--Proactively provide education to your patients and their caregivers on how to stay safe and get food, medication, pet food, household goods, and other necessities, including companies that deliver to minimize household exposure. You may deliver the patient’s medications, but their caregivers will also need to get their medications.

--Proactively remind patients and caregivers about CDC guidelines (e.g. handwashing, greeting people, etc.), and to clean their cell phones.

--Consider having non-caregiver loved ones Facetime or Skype to “visit” rather than coming in person.

--Use virtual visits whenever possible.

--For patients who need to be seen, send only the necessary team members.

--Call ahead to screen for exposure and symptoms of the patient or caregivers to see if PPE is necessary.

--Ensure your team members have appropriate PPE in their cars, as well as disposal containers. Consider donning and doffing the PPE in attached garages or entryways to help maintain patient privacy.

--Make sure people going into homes know how to don/doff PPE and are FIT tested, if appropriate.

--Wash hands or use hand sanitizer prior to and after seeing patients.

--Wipe down all equipment and cell phones before and after each patient.

--Follow all guidelines for facilities and minimize in-person visits to only needed personnel.

--Don’t let fear prevent appropriate patient care.

4) For ambulatory palliative care:

--Proactively provide education to your patients and their caregivers on how to stay safe and get food, medication, pet food, household goods, and other necessities, including companies that deliver to minimize household exposure.

--Remind patients and caregivers about CDC guidelines (e.g. handwashing, greeting people, etc.) and to clean their cell phones.

--Consider having non-caregiver loved ones Facetime or Skype to “visit” rather than coming in person.

--Screen all patients and caregivers for symptoms or exposure when calling to remind them of their appointment.

--If URI or COVID symptoms, follow your institutional guidelines about home isolation and testing.

--Consider which patients’ needs can be met with virtual or telephone visits.

--Work with your institution to implement HIPAA approved telehealth visit capabilities if you do not have them. Understanding some telehealth visits cannot be reimbursed, talk with your colleagues and health system about what amount of service can be feasibly provided without guarantee of reimbursement.

--Consider which team members really need to be in the room, versus can call to provide information or support.

--For now, do not require that patients be seen at a certain frequency for controlled substance monitoring if it can be safely done for a particular patient, unless required by law or regulation.

--Don’t let fear prevent appropriate patient care.

5) For inpatient palliative care:

--Provide education to your patients’ caregivers on how to stay safe and get food, medication, pet food, household goods, and other necessities, including companies that deliver to minimize household exposure for when the patient is discharged.

--Remind patients and caregivers about CDC guidelines (e.g. handwashing, greeting people, etc.) and to clean their cell phones.

--Consider having loved ones call, Facetime, or Skype to “visit” rather than coming in person, if they even are allowed into the hospital.

--Consider having physicians, NPs, and PAs who are at home in isolation due to a cold, travel, or COVID exposure, be a triage/advice person for your consult service. Palliative care teams are often at capacity without an epidemic, so with COVID we may need to give recommendations to non-palliative clinicians (e.g. teleconsults or curbsides) when we can, and only see the patients who need our in-person services.

--Establish and update what a “patient who needs your service” means as a team at each site, so there is not confusion if the definition changes during a surge. For a palliative care team covering multiple hospitals, consider asking for emergency privileges now at all the hospitals, so all clinicians can flexibly cover hospitals they don’t normally practice in.

--Make sure your institution is planning for symptom management needs, like opioids and benzodiazepines for dyspnea and anxiety.

--Be prepared to offer virtual bereavement support to families who are not allowed to be with critically ill patients.

--Support other teams in the hospital, everyone will be stressed and a kind word or offer to help may go a long way.

--Don’t let fear prevent appropriate patient care.

6) For Program Directors:

--Consider going virtual for education and fellow support.

--Have the trainees see the non-COVID cases, to minimize their exposure and conserve PPE. Attending physicians will need to see the patients, and can teach about COVID outside the room, so the trainees don’t lose out on the learning.

--Consider extra support, like virtual video check-in’s, or more frequent texts/ or calls about the fellows’ well-being, given the stress on the system.

--Make sure your fellows can get food and necessities, and have a place to go, if they are asked to isolate

And as all us hopefully do, prioritize kindness. There are reports of xenophobia behaviors, and shunning of people with COVID, and with heightened emotions we may need to remind people we ALL do better when we care for each other and treat each other equally.

Finally... together we can do this. As hospice and palliative care people, we understand the value of team. And right now we are all on each other's team. While we may be social distancing, we have a vibrant virtual community, as well your home community. AAHPM has Connect, we can find each other at the #hapc hashtag on Twitter, or at the #hpm tweetchat. Take care of you, take care of each other.

Much love folks. Let’s be safe, and let’s be prepared.

Strong back, soft front. Deep breath. Stay grounded.

Holly Yang, Alex Smith, Christian Sinclair, Eric Widera, Paul Tatum, Drew Rosielle

For more posts on COVID-19, click here.
For more posts on Emergency Preparedness, click here.
Check out the Pallimed COVID-19 Resource page here.

Resources: NHPCO - COVID-19 Information
CMS - CMS Actionable Guidance to Providers about COVID-19 Virus

Friday, March 13, 2020 by Pallimed Editor ·

Monday, November 18, 2019

Mandated Queries of the Florida Prescription Drug Monitoring Program: A Three-Month Experience from a Cancer Center-Based Outpatient Palliative Medicine Clinic

by Chad Kollas (@ChadDKollas)

Background and Introduction

On July 2, 2018, Florida implemented a new law requiring all licensed physicians to query the state’s prescription drug monitoring program (PDMP), known as the Electronic Florida Online Reporting of Controlled Substances Evaluation (E-FORSCE), before prescribing controlled medications, including opioid analgesics. Like many other recent state and federal policies, this law was intended to reduce deaths from prescription opioid overdoses.
Our outpatient palliative medicine clinic initiated a quality improvement (QI) project to characterize the effects of the new and identify opportunities to improve palliative care in the setting of its implementation. We posted the results of the first month’s queries in an earlier Pallimed post, published in September 2018. This article represents the findings from the queries over the first three months’ queries and brings further clarity to our initial findings.

Methods

This quality improvement (QI) project was reviewed and approved by the Orlando Health/UFHealth Cancer Center Joint Oncology Committee for 2018-19. We began recording results of all E-FORSCE queries occurring after the law’s implementation of July 1, 2018 through September 30, 2018. We informed each patient that the PDMP query had become mandatory in Florida, and we discussed the results of each query with each patient. Each query examined the last 12 months of the patients’ controlled medication prescriptions.

We documented patients’ demographics, including each patient’s age, gender and limited identifying information, such as patient names and identification numbers, which were subsequently de-identified for statistical analyses. We recorded patients’ main diagnosis and pain symptoms, the number of prescribers listed by the PDMP as well as the dose of the patient’s opioid analgesia, measured in average daily morphine milligram equivalents, as provided by the state database. We also noted pain ratings with and without medications, including opioids and non-opioids, as well as the difference between those ratings. Beginning on September 6, 2018, E-FORSCE began displaying each queried patient’s “NarxCare Overdose Risk Score,” so we began record those scores as part of this QI project. According to its creator, Appriss Health, the NarxScore is an overdose risk score [that] is a predictive score for unintentional overdose death,” and that it is “designed to draw awareness to the presence of significant PMP data.”, although there are no studies in the medical literature assessing its validity as a predictive tool.

We classified the numbers of each patient’s prescribers binarily (one prescriber or more than one prescriber), and usage sage patterns were classified ordinally as medically legitimate, aberrant or medically illegitimate. Medically legitimate patterns reflected 1) cross-coverage of medication renewals, 2) evolving sites of care (such as a transitioning into oncologic care after treatment of cancer pain before establishing a cancer diagnosis), 3) prescribing of non-opioid controlled medications by primary care physicians (PCPS) and/or their cross-coverage and 4) prescribing within the policies and rules of the PMC.

We defined medically illegitimate patterns as involving 1) duplicative prescriptions (multiple prescriptions within close temporal proximity at multiple geographic site or multiple providers), 2) patterns unexplained by under-treatment and/or an inability to fill prescriptions in full quantity, or 3) behavior(s) prohibited by the policies and rules of the PMC. We used the category of aberrancy to describe situations which did not fall cleanly into the definitions of medically-legitimate or illegitimate usage.

Additionally, we classified opioid dosages ordinally, using the three planned categories for daily MME dose that used by the Centers for Medicare and Medicaid Services (CMS) in its opioid prescribing rules for 2019: less than 90 MME, 90-200 MME or greater than 200 MME. We also allowed for individualized comments regarding any unexpected or unusual findings when performing a PDMP query. The mean MME over the last 30 days was usually obtained from the PDMP, but was calculated based on prescribing instructions when not provided explicitly by that database.

Finally, we recorded patients’ self-reported pain ratings based on a 0-10/10 scale, with 0 indicating no pain and 10 indicating excruciating pain (or the most severe pain the patient had ever experienced). We recorded patients’ pain ratings with and without cancer pain medications, clarifying that we meant pain medications being prescribed medically for their cancer pain. In our clinic, the usual goal for cancer pain control is achieving a pain rating of 4-5 out of 10, not the achievement of a pain-free state, an approach that evolved from the American Pain Society’s recommendations for managing cancer pain.

Results

Demographics

We queried the Florida PDMP for a total of 359 outpatients from July 5, 2018 to October 4, 2018. The vast majority of these patients (90.3%) reported cancer-related pain, while the rest reported chronic pain from other conditions for which they received outpatient palliative care within the cancer center, including chronic pain from sickle cell disease (21 patients, 5.8% of total). The patients’ average age was 56.3 years old (range of 21 to 85) and 61.3% of them identified as female. Twenty-five of the 359 patients (7%) represented new consultations to the Palliative Medicine Clinic.

Prescribers and Usage Patterns

About 76% of the patients had more than one prescriber listed in the PDMP, while 21% had a single prescriber for controlled medications. Only two patients (0.6%) exhibited possible aberrancy: one had a query showing 15 prescribers, and the other was a healthcare professional who had self-prescribed renewals of anxiolytic medications (physicians in Florida are not permitted to prescribe to themselves, because Florida law specifies that a physician-patient relationship must involve two people; self-prescribing may be permissible in other states, albeit ethically questionable). The patient with 15 prescribers was ultimately not found to be using opioids illegitimately, but rather was participating in the healthcare system in a fragmented way, through two, parallel sets of third-party payers (health insurance and motor vehicle insurance). The self-prescribing physician already had received legitimate prescriptions for his medication from other physicians, but he had called in over-lapping renewals for the sake of geographic convenience; he stopped this behavior when reminded about its questionable nature. There were no patients whose prescribing pattern suggested otherwise illegal or medically-illegitimate behavior, such as “doctor shopping.”

In the first month of PDMP queries we had uncovered four cases in which the state PDMP was demonstrably incorrect, with an error rate of 3.2% in the database. At the completion of three months of queries, we identified 17 errors, which represented an error rate of 4.7% in the E-FORSCE database. We did not define as errors instances in which the E-FORSCE database misidentified a single prescriber as multiple prescribers, a very frequent occurrence within the database (for example, I was often identified as two prescribing physicians, under the names “Chad Kollas” and “Chad Kollas Kollas”), although the database does appear to use such duplication errors when calculating NarxScores. The most common errors were as follows: 1) no prescription listed in the PDMP when a prescription was clearly provided based on objective documentation (such as a filled medication bottle from a pharmacy listing the prescription date and prescriber’s name which were absent from the database), which accounted for 10 cases (2.8% of all cases); 2) grossly incorrect calculation of MME in 4 cases (1.1 % of all cases); and, 3) verifiably incorrect prescriber misattributed to the prescription, which occurred in 3 cases (0.8% of all cases).

Opioid Dose and MME Distribution

The mean opioid analgesic dose for all of the patients was 268 MME per day, but the median dose was 126 MME per day, with a very wide range of daily dosages (6 MME to 2880 MME; SD = 368.1). The distribution of Daily MME is shown in Table 1 (below).

Ten patients (2.8%) had received opioid analgesics within the last year, but were no longer taking them at the time of the PDMP query. Three patients (0.8%) died from their cancer during the QI project.

Pain Ratings and NarxCare Overdose Risk Scores


The patients’ mean pain rating without taking any pain medications was 8.9 out of 10 (SD = 1.2, Median = 9.0). The patient’s mean pain rating when taking their prescribed cancer pain medications was 3.9 out of 10 (SD 1.4, Median = 4.0), with an average reduction in pain rating was 5.0 points (SD = 1.5, Median = 5.0). This represented an average in reduction in pain of 56.3% with usage of the prescribed analgesic regimen. We recorded NarxCare Overdose Risk Scores for 144 of the 359 outpatients included in the QI project, as this measurement was first added to the E-FORSCE database in the third month of the project. The patients’ mean NarxCare Overdose Risk Score was 421 (median = 410, SD = 156.3). The E-FORSCE website recommends co-prescribing of naloxone to NarxCare Overdose Risk Scores greater than 450/999 and mentions that the 450/999 score correlates with an approximate CDC MED Equivalent of just 50 mg/day.

Discussion and Policy Implications

In theory, the Florida PDMP aspires to improve patient safety by embracing the concept that patients are best served by using a single prescriber for medically-appropriate controlled pain medications. Accordingly, each patient in our palliative medicine clinic receives written educational material describing the policies and procedures of the clinic, including a directive encouraging them to receive prescriptions for controlled pain medications from a single prescriber and use a single pharmacy to fill them. Our QI projected showed, however, that about three-quarters of outpatients in a palliative medicine clinic (PMC) housed within a regional cancer center had PDMP queries showing multiple prescribers for their controlled medications (even when account for errors in misidentifying a single prescriber as multiple prescribers). Only 21% of patient queries revealed a single prescribing physician. Fortunately, after careful investigation of each PDMP report, we learned that the vast majority of the patients were taking controlled medications in a medically legitimate way, with only two patients exhibiting medication aberrancy and no patients demonstrating medically inappropriate behavior. This observation seemed to reflect a frequently fragmented pattern of medical care rather than patient misbehavior. Based on patient comments during clinic encounters, the reluctance of physicians to prescribe opioid analgesics, even in a medically appropriate situation, often resulted in the provision of multiple, back-to-back short-term prescriptions, which led to an increased number of prescribers over a relatively short period of time.

Much of the reasoning behind Florida mandating a prescriber query of the PDMP was to uncover inappropriate patient behavior, which implicitly suggests the state believed that the rate of illegal behavior in patients was high. Our QI project suggests, however, that in a population of patients in an outpatient palliative medicine clinic, the risk of aberrancy is very low. Our QI project also suggests that the error rate of the Florida PDMP database (4.7%) was more than quadruple our patients’ aberrancy rate (0.6%) with no cases of medically inappropriate behavior identified. Given this, we express profound concern that Florida’s PDMP query requirements may worsen existing opioid stigma, making it even more difficult for palliative care patients to fill medically legitimate opioid prescriptions (Kollas CD, Boyer-Kollas B. Assessing Opioid Stigma in Oncology Outpatients Receiving Palliative Care for Cancer-Related Pain (S714). The Annual Assembly of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association: Education Schedule and Abstracts. Journal of Pain and Symptom Management February 2018;55(2):663-4.)

The introduction of the NarxScore onto the query result page of the Florida PDMP beginning in September 2019 added yet another variable for physicians to consider when prescribing controlled medications. Almost half of the patients for whom NarxScores were available in our QI project fell into a category for which Apriss recommends consideration of co-prescribed naloxone to reduce the risk of harm from an opioid overdose . None of the patients in our QI project experienced a need to use naloxone during the course of the project, but co-prescription of naloxone has gained support as a public safety measure to reduce opioid overdose deaths (AMA Task Force Reference). Our QI project does not allow an analysis of how the presence of the NarxScore itself might affect physician prescribing, but this would be an interesting area for future study. Based on our impressions of comments by fellow Florida physicians accessing E-FORSCE, we suspect that the NarxScore may introduce an additional “chilling effect” into the prescribing of controlled medications. Additionally, a very recent Florida law suggests that this chilling effect may be an intentional one. On June 25, 2019, Governor Ron DeSantis signed into law a requirement for Florida physicians to provide a written pamphlet entitled, “Information on Nonopioid Alternatives for the Treatment of Pain,” before prescribing any Schedule II analgesic to any patient (See here and here). Of note, the required pamphlet became available on June 28, 2019, just three days prior to the new law’s implementation date of July 1, 2019, and the sole version available as of this writing is written in English only. Moreover, this law also requires that prescribing physicians to inform patients explicitly that they have a right to refuse opioid analgesics, although patients have always possessed the right to refuse any unwanted treatments before implementation of the new law.

After our one-month assessment of this QI project, we posed a question that we hoped we could answer after gathering three months’ worth of information from PDMP queries: Is physicians’ time best spent querying a database with a higher error rate than the rate at which it identifies medically inappropriate behavior and which might lead to worsening opioid stigma and difficulty filling prescriptions for cancer pain medications? Unfortunately, we remain unable to answer this question definitively, although our current results affirmed that the error rate of E-FORSCE exceeds the rate at which patients exhibit medically inappropriate behavior. More importantly, in light of Florida’s most recent law and PDMP changes, we were probably asking the wrong question. We should have been asking who would be held accountable for the inaccuracies in the E-FORSCE database. That answer came in mid-June 2019, when the E-FORSCE website added a qualifying statement to each patient’s query, which reads as follows: “The Department of Health makes no claims, promises, or guarantees the accuracy, completeness, or adequacy of the contents of the information in the E-FORCSE® database, and expressly disclaims liability for errors and omissions in the contents. The records herein are based on information submitted by pharmacies and dispensing health care practitioners. Records on this report should be verified before any clinical decisions are made or actions are taken” (Italics are mine). This statement effectively passes the risk from errors within the Florida PDMP back onto physicians, essentially forcing them to independently “verify” the information produced by the query. So not only do physicians have to spend much more time when prescribing opioid analgesics, they also assume the potential risks of interpreting the Florida PDMP data, which may be incorrect about 5% of the time. These policy changes occurred despite announcements by the Centers for Disease Control and Food and Drug Administration that had begun to drive the pendulum of opioid policy back into a position of improved balance. While it remains unclear whether Florida physicians’ time is best spent querying a database, it seems clear that Florida’s politicians have doubled-down on a policy approach that bluntly endorses reductions in opioid prescribing, shifting risk for errors in the PDMP on the shoulders of Florida physicians and burdening physicians with mandated discussions that are clearly intended to discourage opioid prescribing, even in medically appropriate situations. Our patients deserve better.

Dr. Kollas has provided outpatient palliative care at Orlando Health UFHealth Cancer Center for over 17 years. He first wrote about his personal experiences with chronic illness and pain in a 1997 article in the “On Being a Patient” series in Annals of Internal Medicine. You can find him on Twitter at @ChadDKollas.

To cite this QI article: Kollas C. Mandated Queries of the Florida Prescription Drug Monitoring Program: A Three-Month Experience from a Cancer Center-Based Outpatient Palliative Medicine Clinic. Pallimed. November 2019. Available at: https://www.pallimed.org/2019/11/mandated-queries-of-florida.html

Monday, November 18, 2019 by Pallimed Editor ·

Friday, November 1, 2019

Community Living for Hospice Patients: Don't "Put" People in Nursing Homes

by Lizzy Miles (@LizzyMiles_MSW)

No one should ever be “put” in a nursing home. You might agree with this statement because you don’t like nursing homes, but that is not what I’m saying. The word “put” is offensive when you are describing a person, unless you are talking about putting a 3 year old in the time out corner because he colored on the walls.

I would like to make the argument that no adult wants to be ‘put’ anywhere. You put dishes away, you do not put people away. When we are facing a situation in which the care needs exceed the family member’s ability, there are times where the best option is for the elder to move to a safer environment.

Let’s look at these two scenarios:

Daughter puts mom in a facility because mom is too much of a burden for daughter to take care of at home.

Or

Mom moved to a new community in which there were nurses who could take care of her health care needs. There are chefs who make her meals and caretakers who help her with her activities of daily living. She has opportunities to make new friends, play bingo, listen to music, and arrange flowers. Daughter’s time with mom can be spent sharing memories, watching movies and working on jigsaw puzzles together.

Same scenario. Which one feels better to you?

We do not want to say to our loved one, “You are too much for me.”

What we want to say is, “I want you to have the best care possible and I believe this choice will be better for both of us. I love you and I will continue to spend time with you.”

I should know. I was the daughter. I was an only child in my late twenties when my mom’s sister died. My aunt had lived near my mom and checked in on her daily. My mom was in declining in health and not really doing the best job caring for herself. She wrecked her car and wasn’t eating well. And suddenly I was the one responsible for her and I lived 90 minutes away. I was still working full time and tried to take care of things long distance, but I didn’t feel it was working. There was no end in sight either - though she was declining, she wasn’t terminally ill.  After touring seven facilities, I found one that I liked and brought her to see it. She liked it and moved to an assisted living facility in my city that would be able to care for her until the end of her life.

As it turned out, it was the best decision I could have made. The facility staff welcomed her with open arms and she thrived. She lived there six years and was the happiest I had known her my whole life. During this time my mom and I even became closer than we ever had before.

There is no happy place. Happiness is an attitude.

We’re not supposed to have favorites in hospice care, but a hospice patient who was on service for a couple of years just recently died. I’m really going to miss her. Every time I saw her she was always smiling and expressing gratitude. She was the happiest person I had ever seen in a facility, including my mom. She dressed to the nines with all of her bracelets and necklaces and gushed about the staff, the activities and even the food. As you can imagine, when facility staff were giving tours, they always introduced her to the visitors. This resident also had very attentive staff because she was such a pleasure to be around. Her joy for life was contagious.

Yes, a move to a nursing home is hard, but most patients adjust. In my experience, those who don’t adjust are likely to be unhappy in any setting.  There are residents who don’t leave their room at the facility – but I bet you they never left their house either.

One final story. A patient who had lived at home ended up moving to a facility due to increased care needs. I visited her a week after she had moved and I personally felt sad that she didn’t have pictures or personal items. She, however, looked around the room devoid of belongings and said, “maybe this is how things are supposed to be. Maybe we don’t need a lot of stuff.”  I had no idea she used to be a hoarder. She didn’t know it, but she was embracing the new minimalist trend.

We decorate rooms and put pictures on walls at the nursing home because we are the ones who are still attached to belongings and things. Part of growing older is shedding the past and the stuff. If you ask any resident in a nursing home of what they want most, it is not their china or their figurines and sometimes not even their pictures, but rather to be with those they love. Yes, there are those elders who built their home with their bare hands and they are attached to “place” but most of the time, it ends up not being about the place but the fear of being forgotten. Consider this though: in a facility, elders have much more human interaction and attention to emotional needs than they do at home with a single exhausted caregiver who is at their wits end.


Love and companionship can take place anywhere. 

Hospice personnel can help family members have these conversations. We lead the way by how we frame it. We can talk about anticipated care needs and why moving may be the best option for care. We can share stories about attentive, compassionate care and the activities that the facility has.  We can remind the patients and families that we’ll be there with them too.

Language matters. Words matter.

Let's talk about RESPITE

If you’re talking about a temporary respite with a patient, how do you bring it up?  Is it because the caregiver is exhausted? How would you feel if you were the patient and someone told you that you were “exhausting?”  Imagine hearing, “I need a break from you.” The caregiver needs to be firm with the patient about their needs but they can do it in a way that doesn’t come across in a way that makes someone feel like a burden.

Consider saying something along the lines of “I want you to have the best care possible and right now I don’t feel I am able to do that for you. Please - I would like to take a few days to rest and recharge my batteries. It will only be until x day and then you will be back home again.”

If the respite is for night time relief and the caregiver is planning on visiting during the daytime, say so. “I’ll come visit you so we can catch up on the news/family/whatever.”
When families are in the midst of caregiving, we can sometimes forget about the relationship we used to have with the patient. If we take time to consider the way in which we talk about caregiving needs with the patient in a way that demonstrates the love that we have, we may be able to alleviate some of the sadness or feelings of abandonment.


Lizzy Miles, MA, MSW, LSW 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.
photocredit:
hands Photo by Rod Long on Unsplash
plant photo by Sarah dorweiler on Unsplash
all other photos via author


Friday, November 1, 2019 by Lizzy Miles ·

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