Saturday, December 3, 2016
By Mark Ligorski
Just like in superhero movies, there is always a back story. This is mine.
After graduating medical school in 1981, I went to work at St. Vincent’s Medical Center on Staten Island for the next two years, the first spent in rotating through the different areas of medicine and surgery and then a year of Internal Medicine. 100 hour work weeks were typical, with on call shifts every 3rd or 4th night.
People stayed in hospital for weeks at a time; there were still wards with four to six patients. Intensive and cardiac care units were still pretty new. The Karen Ann Quinlan case was settled just a few years before and there was no such thing as Do Not Resuscitate or Advanced Directives. The first commercial edition of Our Bodies, Ourselves was published in 1973. Survivor’s song “Eye of the Tiger” was number one that July.
This was just before AIDS and MRSA.
This was before managed care and none of us knew or paid attention to how much things cost.
This was the world that I walked into, holding my white coat and stethoscope; talismans to keep me safe. I was clueless, frightened, and excited. I remember one of my first patients, a middle aged gentleman. I went in to introduce myself, like I was a waiter at Red Lobster, “Hi, I’m Mark, I’ll be your doctor today.” I asked him to call me Mark.
He said, “Yes, Dr. Ligorski.”
“No, call me Mark.”
“Yes, Dr. Ligorski.”
I began to understand that he needed this 20-something kid to be fully invested with the power of the craft. He needed my white coat as much as I did.
I don’t remember anyone’s name. It’s not that I didn’t care about my patients and their welfare; I cared a lot and so did my fellow students, interns, and residents. But we were coming face to face with what the Buddhists call the “divine messengers”: old age, sickness, and death. We were supposed to take care of them, learn and embrace them, but also defeat them. Insofar as they frightened us, we saw them as failings or shortcomings, and we transferred that failure onto our patients, i.e., there was something wrong with them if they had gotten sick. We somehow had a pass. We lived in the Valley of the Shadow of Death but were not touched by it. I don’t remember any of my colleagues getting really sick, but I suspect we would have not been kind to them in their sickness.
Code: our euphemism for a sudden cardiac arrest. As if you didn’t have enough to do in being awake for the next 36 hours; if you were on call, you were on the code team. If a code was called, over the PA system and on your pager, you dropped everything and ran to where the code was taking place. No elevators for us, you bounded up the stairs. I don’t know how many of them I went to; I only know one thing: no one who was code status survived. I remember one New Year’s Eve where five people died. I have to say that there was something exciting about it. Here was the literal struggle of life and death: excitement, activity, choices about drugs, chest compression, defibrillators, really long and scary cardiac needles, pacemakers, blood. I remember after one code looking down to find a needle stuck in my arm. I had no memory of it getting there and certainly no pain.
But after a while, regardless of the excitement, the certainty of a violent death at our hands began to weigh upon us. We were stuck in a system that did not allow us any leeway: everyone who had a cardiac arrest had to be attended to. It was the law.
It was a difficult system that caught all of us in a loop, doctor and patient and family. We knew that, more often than not, what we were doing was not really a kindness. There had been this general process of moving the terminally ill out of the home and into the hospital. In a culture that was increasingly directed towards staying young and beautiful, denying the realities of old age and sickness, pretending that we could cheat time and entropy, we were shielding our eyes from things we didn’t want to see. Where once the care for the elderly was the province and responsibility of families, this was now moving to the medical community. It became our job to be with them at the end, and unfortunately that end, in the form of the code, was not really pleasant.
Those of us who chose this vocation to improve and save lives were challenged by a technology that had outpaced our morality. That uneasiness was not ours alone: sometimes patients and families would look at this medicalization of the end of life and ask us why we were engaged in behaviors that were futile at best and cruel at worst.
The conflict and ambivalence was universal and reached out in many directions. There was a rumor going around the hospital that Charles Hynes, the District Attorney for Brooklyn, threatened the medical community. If he discovered evidence of us not doing everything to keep people alive, he would bring us up on murder charges. I don’t know if anyone was brought up on charges, I’m not even sure the story was true, but we certainly believed it, and it was consistent with the prevailing rules of the time.
I was traumatized by my time in medical/surgical residency. Years later, I was in KMart and over the loudspeaker the voice called out, “Mr. Jones, code blue, aisle 7.” In pure PTSD response, my heart started racing, and I was about to run to aisle 7 before I remembered I was in KMart and not in the hospital. I was not alone in this. In a survey of 1,100 doctors, 88.3% of doctors said they would choose a do-not-resuscitate or “no code” status. Only their own experiences could have put them off choosing this for themselves.
In 1990, the Federal Patient Self Determination Act legalized what we needed for a long time: a patient’s right to choose their own treatment, including the ending of that treatment. No longer were patients and doctors locked into a death spiral where more and more was done for less and less benefit. Now there was the chance to approach the end of life in a thoughtful, compassionate, and reasonable manner. But this wasn’t easy.
The first modern ventilator, the Bird Universal Medical Respirator, was introduced in 1958. It was almost 20 years before the Quinlan case was ruled on and 30 before the Federal Patient Self Determination Act was passed. It seems to take a generation for ethics to catch up with the technology we create. Even now, we are still in the early days of developing an understanding, in both the medical and lay communities, of how to stop treatment when it isn’t needed, and let people day with ease, calm, and graciousness.
I hope this series of essays will illuminate the process of old age, sickness, and death, and the many ways it manifests. These issues are too often relegated to the shadows. In the dark places of our hearts and minds they become monsters to frighten us. But light erases shadows and monsters, leaving brightness and clarity.
Saturday, December 3, 2016 by Pallimed Editor ·
Saturday, November 19, 2016
(Register for the free webinar here)
There is no disputing that recent events mean a huge shift in the direction of health care in the coming years. Although we’re learning more each day about what programs will stay and what will go, there remains tremendous uncertainty that only time will clarify. Yet in this period of transition, there is at least one major program that the nation’s best health policy minds agree is here to stay: MACRA’s QPP!
WHAT DO THOSE CRAZY ACRONYMS MEAN?
The Medicare Access and Children’s Health Insurance Program (CHIP) Reauthorization Act of 2015 (MACRA) is a bipartisan law that repealed the Sustainable Growth Rate and established a brand-new Quality Payment Program (QPP). The QPP, which goes into effect on January 1, 2017, will accelerate the movement towards payment for value by creating two new clinician payment tracks: the Merit-based Incentive Payment System (MIPS) and Advanced Alternative Payment Models (Advanced APMs). In the early years of these programs, clinicians participating in MIPS will see positive or negative adjustments to their Medicare Part B billing depending on their “performance”, while clinicians participating in qualifying Advanced APMs will receive a 5% bonus on top of their Part B billing. Ultimately, the track clinicians participate in will depend on many factors, the most important being the amount of RISK their practice accepts.
AND WHY DOES THIS MATTER FOR PALLIATIVE CARE?
First – this is how clinicians will be paid! In years 1 and 2, eligible clinicians (ECs) include physicians, physician assistants, nurse practitioners, clinician nurse specialists, and certified registered nurse anesthetists who bill Medicare Part B for more than $30,000 and see more than 100 Medicare patients annually. And while the implications will vary based on practice size, work environment, participation in an ACO or other APM, etc., the more proactive you are, the more likely you are to be successful!
Second – the emphasis on performance and APMs represents a HUGE opportunity for palliative care. Palliative care is vital to value-based care, as it demonstrably improves quality of care and quality of life for seriously ill patients, and in so doing, helps the health care system avoid unnecessary utilization and spending. At its most basic level, the transition to value means that hospitals and health systems are increasingly on the hook for cost and quality outcomes. So whether you’re an independent program looking to partner, or a team within a large system that deserves more attention, rapid QPP implementation means that there are going to be more leaders looking for “solutions” that we know palliative care can provide!
SO WHAT DO I DO NOW?
Clocking in at over 2,000 pages, there is no question that the final regulations for the QPP are complicated and confusing. But help is on the way! On November 29, 2016, the National Coalition for Hospice and Palliative Care (NCHPC) is sponsoring a FREE WEBINAR to describe provisions of the final rule and next steps (click this link to register). Experts from the Center to Advance Palliative Care (CAPC), the American Academy of Hospice and Palliative Medicine (AAHPM), the Hospice and Palliative Nurses Associations (HPNA), and the HealthCare Chaplaincy Network (HCCN) will be on hand to clarify who will be most affected and activities that palliative care clinicians should be doing right now.
Again, you can register for the webinar by going to this link. And feel free to send me any questions you have in advance – Stacie.Sinclair@mssm.edu!
JUST CAN’T WAIT UNTIL NOVEMBER 29 TO LEARN MORE?
The Centers for Medicare and Medicaid Services (CMS) has developed a fantastic QPP website that walks users step-by-step through the various components of the MIPS and Advanced APM tracks. It includes interactive tools, fact sheets, and other resources, and CMS is providing regular updates as new information becomes available. And if you need just a little more palliative care flavor in your research, be sure to check out the last NCHPC webinar that our all-star team held in early June, describing the basics of the proposed rule.
We look forward to seeing you on November 29!
Stacie Sinclair, MPP, LSWA is the Policy Manager at the Center to Advance Palliative Care (CAPC). If you enjoyed this post, be sure to check out other scintillating takes on health policy and palliative care from the CAPC staff at https://palliativeinpractice.org/health-reform-quarterly/.
Saturday, November 19, 2016 by Pallimed Editor ·
Wednesday, November 16, 2016
By Lizzy Miles
Before I was a hospice social worker, I was a volunteer. I was so nervous to visit my first patient. Over time, I became more comfortable. Through the course of switching careers from volunteer to social worker, I attended volunteer training at several organizations. There is a lot of really good information provided, but sometimes hospice staff forget what it's like to be NEW. These are the questions I had when I first started. Once I gained experience, and went to school for further training, I decided it might be helpful to write out the answers for others who are just embarking on their hospice journey. It is rewarding.
Q: How do I start the conversation?
If you are meeting a patient for the first time it may be helpful to speak with the volunteer coordinator to get some helpful information about the patient. Introduce yourself and explain who you are and why you are there. If this is not possible, then it may be helpful to start by checking in with the patient, "How are you feeling?" Ask them about their comfort level and possibly "Do you have any pain?" Ask them about their family, interests, and if they would like to share anything. A good conversation starter and question is "tell me about.... cars, when you were young, a time when you were happy?"
• Talk about weather, news, or something that is going on currently. It’s probably best to stay away from politics, but if patient wants to talk about it, you can listen.
• Silence is okay, give them time to think. Avoid rapid fire questions as they will confuse and be hard to understand.
• Look around the room for cues of things to talk about: pictures, decorations, religious artifacts, figurines.
• You can comment on people in pictures, but keep in mind, if patient has dementia, they may be distressed by not being able to identify who it is. So you can remark on their expression. "She looks happy!"
• Make this time about them. Redirect back to them if they ask you too many questions about yourself.
• Be patient. It takes time to build a relationship.
• Listen and observe their body language.
Q: Why do I need to ask permission?
Hospice philosophy emphasizes patient-centered care. Hospice patients and families can feel like they have no control over the situation they are in. By asking permission before you sit or start a visit, you are giving them a sense of control. As a volunteer you want to show respect for patients and make them as comfortable as possible. When you ask permission, they know they have the option to say NO, or refuse your visit. In addition, being courteous and respectful helps to open up the conversation and ensure the patient is willing to meet today.
Q: What do I do if they are sleeping?
If a patient is sleeping you can wake them if you are only there to see this patient and do not want to waste a visit. They can always send you away if they do not want to visit. You will learn by their reaction the first time you try to wake them whether it is a good idea.
Sometimes all you have to do is sit down next to the patient and they hear you and wake up on their own.
The best way to wake a patient is to call their name at a slightly raised voice. If this does not work, then proceed to touch their forearm or hand just above the wrist, and call their name again. If after several attempts to wake the patient they do not wake, whether you stay in the room or leave will depend on the plan of care you’ve been given and the purpose of your visit. Your volunteer coordinator may be able to offer suggestions regarding the best time of day to visit.
Facility patients: If you have other patients in the facility, then go and see them first and then return to this patient.
Home patients: The caregiver can give you guidance as to whether to wake the patient.
Q: What do I say when they ask me about myself?
If you feel comfortable answering the question and sharing about yourself then that is okay. Be aware that some information should not be shared and the visit is for the patient. The patient has enough to worry about with their own life without worrying about us, so we should keep our sharing on a positive note. One should share information if it will help to strengthen the relationship and build rapport with the patient. If you do not feel comfortable with a question simply tell them so. Sometimes patients will ask your opinion on things. You can redirect back to them by saying, “I’m not sure. What do you think?”
Q: What do I say if the patient asks me, “Why am I still here?”
It is not uncommon for patients at the end of life to have existential questions. They do not really expect you to have an answer to this. A simple way to respond to these type of questions would be to provide a reflective statement. “You’re wondering why you’re still here.”
Q: What do I do if family is there? (Facility)
Introduce yourself as a hospice volunteer. Ask if the family member(s) would like you to join them with visiting the patient or if they want time alone. Their visit takes priority, so never let them feel they need to leave so you can visit. However, sometimes family members will use the arrival of a volunteer to allow themselves to leave. You will have to read the situation.
Q: What do I do if they ask me to leave?
Say "Thank you for your time" and leave. It is important to remember that this is their home whether in the community or in a facility. As a volunteer we should respect their wishes and their desire for privacy. If the situation allows, ask if you can return some other time to visit with them.
Q: What if I have to leave and they won't stop talking?
The best way to handle a talkative patient is to start “leave-taking” behavior before you actually need to leave. Leave-taking behavior is the non-verbal actions that someone does when they are about to leave a room. If you do them slowly, the patient will understand your visit time is coming to an end. Behaviors can include putting on a coat, gathering your things or shifting forward in your chair. When you have the opportunity to say something, you can tell the patient "I have to leave in 5 mins." Another way of saying this is "I'm sorry, I have to get going and I had a wonderful time with you today. I hope we can continue our conversation next time we visit.”
As you get to know the patient, you will learn how much time in advance that you need to start the leave-taking. If you are scheduled as a regular volunteer with the patient, you can tell them that you will continue the conversation the next time and that you look forward to hearing more about xyz. If they ask when your next visit will be, you may tell them an answer if you know (i.e. next week, in a few days).
Q: What does it mean to “be present”?
When we are with a hospice patient or family member, we want to be completely there, both physically and mentally. Turn off your cell phone and put it away. Disregard what has happened on your way to see the patient and do not think about what is happening after the patient. Give 100% to the patient and what their needs are at this moment.
Q: What do I do if they want to give me something?
Hospice patients and families are considered to be “vulnerable populations.” It is not uncommon that they may feel indebted for the time that you are spending them. Gracefully decline all gifts, as it is hospice policy. Assure them that knowing them is a gift in itself. If they want to do “something” you can tell them to write a thank you letter to the hospice, or tell their friends and family about their positive hospice experience.
Q: What if I want to give the patient or family something?
Remember, that for most patients, they are learning to “let go” of the material world. Patients at the end of life have a greater appreciation for the intangible gifts such as your time and presence. Do not underestimate the value of what you do.
Ask the volunteer coordinator if you have something in mind that you want to give the patient. It may be acceptable to give a small item such as a flower, but beware of the power of reciprocity. By giving gifts you could create a greater feeling of imbalance. Food items can be tricky for multiple reasons. Family members may have a different idea of what the patient should be eating, or the patient could have a medical condition that affects their swallowing or digestive capabilities.
Q: What do I do or say if the patient or family member starts crying?
Allow the tears to flow. Don’t be uncomfortable with the tears and do not rush to offer a tissue unless they appear to be looking for one. (Try to read their body language.) You don’t have to say anything, but if they seem like they want to talk about it, you can say something like, “It seems like I may have said something that has stirred up some emotions. Would you like to talk about whatever is going on?”
Q: What do I do if they say they are in pain?
Hospice nurses are specialists in pain control and so this is not likely to be a frequent occurrence, but it could happen. If the patient is in a facility, you can press the call button or ask the patient if they want you to find a nurse. Sometimes a patient may describe pain but then tell you they do not want you to call a nurse. If a patient is at home, notify the patient’s caregiver of their pain report. In the meantime, you can ask if there is anything you can do to make them more comfortable (i.e. adjust their pillow or blankets, hold their hand).
Q: What to do if they fall?
Do not move them!! Ask if they are okay. If in a facility go and get a nurse or notify a staff member that the patient needs assistance. If at a home notify a family member and call the hospice nurse or volunteer coordinator. As a volunteer we are not trained to assess a fallen patient or assist in transferring them safely so it is best to leave it to those who are familiar with the process.
Q: What to do if they complain about a facility?
There are some things about our lives that we can change and some things we cannot. Sometimes patients just need to vent. It’s important to remember that we cannot necessarily “fix” every situation. Your primary role is to let the patient feel they are being heard. You may also ask them if they have raised their concerns with the facility. If they haven’t, then encourage them to share their concern with the appropriate department.
Some questions or complaints are resolvable “I don’t know when dinner is.”
Do not get involved in trying to resolve an issue, unless it is an immediate need that you can support by finding someone, “I pressed the call button 20 minutes ago and they still haven’t come.” You may be able to walk to nurse’s station and relay the patient’s need. Talk with your volunteer coordinator if you have questions or concerns related to information the patient tells you.
Depending on the nature of the complaint, you may also be able to reframe or redirect.
When you reframe, you are helping the patient look at the situation in a new light. For example, if they are talking about the food being bad then say something like "you were telling me the other day how much you loved the tapioca pudding.”
To redirect a patient, you might say something like, “it’s not the same as home-cooked meals. What were some of your favorite foods to make?”
Always remember you are not in this alone. The volunteer coordinator is just a phone call away for any questions or concerns that you have.
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of 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
Wednesday, November 16, 2016 by Lizzy Miles ·
Tuesday, November 15, 2016
by Amy K. Shaw
The healthcare system is undergoing a fundamental shift from care geared primarily toward medical or clinical needs to care that addresses the needs of the person as a whole. The forces driving this change are two-fold. First, a consumer-focused movement is gaining increased momentum amidst widespread recognition that better patient engagement improves healthcare quality and lowers costs. Second, significant changes in national policy require ongoing monitoring and measurement to assure progress towards the goal of person-centered care for those with advanced illness. In January 2016, the Centers for Medicare and Medicaid Services issued a final rule that reimburses physicians and other healthcare providers who engage in end-of-life discussions with patients. However, nearly two-thirds of physicians report feeling inadequately prepared to address these challenging and often culturally unique subjects.
National Quality Partners’ (NQP) new issue brief, Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care, builds on foundational efforts in hospice and palliative care and provides a common language to help clinicians better understand an individual’s needs in order to achieve the highest quality of care for that individual. NQP’s Advanced Illness Care Action Team, co-chaired by The Coalition to Transform Advanced Care (C-TAC) and Planetree, includes 25 patients, care providers, physicians, nurses, spiritual advisors, and other experts from the public and private sectors who developed the issue brief. More than two dozen individuals and organizations leading robust initiatives to transform advanced illness care in the Unites States also provided input.The issue brief highlights six key preferences of high-quality, person-centered advanced illness care: purpose and connection; physical comfort; emotional and psychological well-being; family and caregiver support; financial security; and peaceful death and dying. It also provides snapshots of organizations that have embraced one or more of these key areas and pinpoints opportunities to use quality measurement to transform advanced illness care.
Amy K. Shaw is the Director of Marketing and Communications at the National Quality Forum and has nearly 15 years of experience in developing and implementing public outreach strategies to raise awareness of critical health and health care issues.
Join #hpm Chat, Wednesday, November 16, 9:00-10:00 pm ET, co-hosted by @NatQualityForum and @CTACorg, to share your views on person-centered care. Is the revolution in person-centered advanced illness and end-of-life care a reality or a future ideal? In what ways do your own personal and/or professional experiences reflect these six key preferences, and perhaps others not identified in the issue brief?
- How can we expand the concept of advanced illness care beyond traditional healthcare settings?
- How can healthcare professionals, social services, and community supports form a safety net for individuals with advanced illness, their families, and caregivers
- What are examples of measurement opportunities to make a case for the value of person-centered advanced illness care?
What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 11/16/201 - 9p ET/ 6p PT
Host: @NatQualityForum and @CTACorg
Follow @hpmchat and go to www.hpmchat.org for up to date info.
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org
For more on past tweetchats, see our archive here.
Tuesday, November 15, 2016 by Meredith MacMartin ·
Monday, November 14, 2016
by Bridget Blitz
As a palliative care social worker, I provide home visits to patients and families to explore how they are coping with complex medical issues, which resources they need, how we might add services that could reduce caregiver strain, and talk to them about their goals of care and about their wishes for the life they have left. Startling to me, within these discussions, is the depth of fear and anxiety about finances that leave these individuals struck with more than a horrible illness. They now have to absorb the real possibility of being without a permanent home in addition to adapting to new treatments, symptoms, sudden unemployment, struggling to perform daily tasks and considering eventual death.
Moving through cancer treatment may mean reducing work hours with resultant smaller paychecks; taking time off from employment for an unpaid leave or quitting work; paying for high-cost cancer medications; being charged for hospital and physician visit copayments, or losing health insurance. All these factors may result in a dramatic reduction in income and in the ability to continue paying for basic needs such as rent, mortgage, food and other bills.
When a patient loses his or her health insurance after a cancer diagnosis, there is a necessary scramble to ensure coverage. Paying for COBRA insurance (Consolidated Omnibus Budget Reconciliation Act) after losing a job and/or health insurance is one option but often a prohibitively expensive one, even with regular income. Applying for Medicaid is often not an option because the patient may still have some resources that are counted, such as more than one vehicle or assets or life insurance valued over a certain amount. Some hospitals have a financial assistance plan for which a patient can apply to receive help with hospital bills. These plans may vary, however, in whether they cover outpatient visits and cancer treatment. There are some cancer care grants available which can help supplement the assistance received. What I have found, however, in applying for help with patients, is that if the grant cannot cover the entire debt or if other agencies cannot be found to commit to cover the remainder of the debt, the fund will not assist the patient. For instance, if $4,000 is owed on a mortgage and a cancer fund grant is $500, before that patient will receive $500, the grant staff needs proof that the rest of the debt, $3,500, will be paid by other sources such as family, friends or other programs. Trying to obtain assistance can be a circular argument since no grant program will commit without all the others committing first.
Do not think that cancer’s insidious effect on finances challenges only those in poverty. I have seen cancer push patients into financial bankruptcy and foreclosure whether they have a small home, a large home, or several homes. The financial symptoms of cancer might grow exponentially, starting with a job loss or a reduction in employment hours and possibly end with a forced move out of a familiar home. Forced moves cause more financial burden due to the expenses of moving trucks, hiring movers, changing over utilities and other challenges. Families may have to surrender beloved pets with the move, which adds further trauma and anguish to an already stressed system.
Sometimes, as a palliative care social worker, I am staring down into a large, dark hole that contains someone with cancer and his or her family. Like the oncologist who has no more aggressive treatment to offer, I can offer support, hope, prayers, and compassion. We can apply for benefits, appeal to pro bono attorneys, create solutions and continue talking. Cancer creates a hole that people stand in at times. Cancer’s financial symptoms may scrape the dirt away from under the patient’s and family’s feet, ripping the foundation of an already dire and precarious floor right out from under them.
Bridget Blitz, LCSW, ACHP-SW is a palliative care social worker with Optimizing Advanced Illness Support (OACIS) at Lehigh Valley Health Network, Pennsylvania. When not providing social work home visits, she is either hiking or desperately working toward completing her first pull-up, to win a bet with her thirteen year old son.
Image credit: Medical bankruptcy in the United States, 2007: results of a national study. Himmelstein DU1, Thorne D, Warren E, Woolhandler S. Am J Med. 2009 Aug;122(8):741-6. doi: 10.1016/j.amjmed.2009.04.012
Monday, November 14, 2016 by Pallimed Editor ·
Sunday, November 13, 2016
As I sat in my hospice interdisciplinary group meeting, reviewing the many patients who have died in the past two weeks as well as our new patients, there was a slight break in the discussion. Being ever the multitasker, I clicked on a NY Times article I have been meaning to read and scanned the first two sentences: “When my husband died from cancer last March at age 37, I was so grief-stricken I could barely sleep. One afternoon, I visited his grave — in a field high in the Santa Cruz Mountains, overlooking the Pacific Ocean — and lay on top of it. I slept more soundly than I had in weeks.” Suddenly, I felt sharp tears forming and a sob threatening to release itself. I quickly closed the article and came back to the present moment, discussing the complexities of our patients and families.
After the meeting was over, I retreated to my office and closed the door. I reopened this beautiful essay written by Dr. Lucy Kalanithi, whose young physician husband died from lung cancer. His book “When Breath Becomes Air” was released earlier this year. She tells of their life together, his life-changing diagnosis, and the unbearable grief she felt after he died. I found myself with tears streaming down my face, deeply moved.
Working in the field of hospice, we are continually reminded of the fragility of life. We walk down the road of grief, loss, pain, fear, and acceptance with all of our patients every day. We have to maintain an ability to be present while maintaining boundaries in order to continue to provide the compassionate and difficult care that hospice requires. But sometimes, there are certain patients or families that just get to us. Perhaps they remind us of our own loved ones, or of ourselves. Despite understanding that death is a natural part of life, we still fear our own mortality and the mortality of those we hold dearest. As physicians, we serve in the role of healer, held at an arm’s distance from the other side of the hospital bed. We can easily lull ourselves into the illusion of safety and impermeability. All it takes is to lose one of our own to remind us that the imaginary line between doctor and patient is truly precarious.
Reading this essay jolted me in a personal way. This hit close to home. Two students who fell in love the first year of medical school; a husband with a background in English literature who chose to pursue a career in medicine, but still yearned to write; two physicians spending the majority of their waking hours in the pursuit of knowledge and service… and now a widow who is now left to raise her young daughter alone... With the exception of the last statement, this could be a description of my life. For a moment, I allowed my thoughts to go to that heartbreaking place of loss, fear, and loneliness: it was nearly unbearable.
It is no wonder we in the modern world often distract ourselves with stuff, with technology and gadgets, with food and alcohol, with self-made drama. Anything would be better than to think about the terrifying possibility that we could lose it all in an instant. And yet, that potential for loss, that recognition that nothing is permanent, is what helps bring meaning to our daily existence. No matter how tightly we squeeze, we cannot hold onto anything forever. It will slip through our fingers, changing shape as it slides away. We can scramble to try to chase after it, or we can relax and appreciate the feeling as it slips and slides across our hands. Either way, it will be gone.
As we approach the season of Thanksgiving, I want to consciously go about my life and my work with intention. I will try to find the moments every day that create meaning. I will not wait to express gratitude, love, or kindness. I will dig into the moments that feel uncomfortable as they often coincide with opportunities for growth and transformation. This is my promise to myself.
Laura Patel, MD is the Chief Medical Officer at Transitions LifeCare, a nonprofit hospice and palliative care organization in Raleigh, NC.
Sunday, November 13, 2016 by Pallimed Editor ·
Saturday, November 12, 2016
by Rev. Rosemary Lloyd
This is what Dr. Jeff Dichter, an ICU Medical Director wrote gratefully to Rabbi Esther Adler of Mount Zion Temple in Saint Paul, Minnesota after her sermon on Yom Kippur, a major holy day in the Jewish calendar.
“As health care professionals,” he continued, “we sometimes wonder ‘aren’t there others in society who might help all of us consider these things ahead of time?’” The medical intensivist found one of those “others” in a rabbi who talked to her congregation about end-of-life care.
Rabbi Adler is not the only faith leader prepared to help their communities. During Conversation Sabbath, Nov. 11-20, clergy of many faiths are joining Rabbi in encouraging their congregants to have “The Conversation” about your wishes with your circle of loved ones and have it sooner rather than later. To start talking around the kitchen table, not waiting until there is a crisis in the ICU.
Rabbi Adler chose to address her congregation on these themes earlier this fall because Yom Kippur is the most well-attended service of the Jewish year and she wanted to promote the mission and tools of The Conversation Project to as many people as possible. During the week of Conversation Sabbath 2016, the Mt. Zion community will be hosting a workshop on how to use The Conversation Project’s free Conversation Starter Kit—a guide to reflecting on and articulating one’s unique, values-based wishes for care at the end-of-life.
The Conversation Project aims to reach people where they live, work, and pray. As part of our strategy, we reach out to congregations because they are pre-existing communities that encourage living with more compassion and less fear--things we all need if we are going to engage in these kinds of tender conversations. Faith communities have long been places where seeds of cultural change were planted on issues like abolition and even marriage equality. Now we are advocating culture change to break a taboo that stops so many from talking about what matters most toward the end of life—not just what’s the matter with us.
By using the “power of the pulpit,” clergy are encouraging their communities to face and embrace the reality of our mortality. This is a meaningful and mature spiritual practice in most faith traditions. It is also a support to health care professionals and family care-providers, as well as people with advancing and serious illness.
“Your words were the first time I have ever heard someone discuss this outside of a hospital,” Dr. Dichter noted in his email to Rabbi Adler. “You did this in a highly sophisticated, yet understandable way. Your words were both educational and sensitive. And your message was precious: talk about it with your loved ones when you are well, and let them know how you would feel, and what your wishes would be, if you were very sick. I would encourage you to give this talk as often as practical, to as many audiences as possible, as it is caring for all in very important ways, and which may not be fully appreciated until the time comes.”
Rabbi Adler eased her way into the topic with humor, quoting Joan Rivers:
When I die (and yes, Melissa, that day will come; and yes, Melissa, everything’s in your name), I want my funeral to be a huge showbiz affair with lights, cameras, action . . . I don’t want some rabbi rambling on; I want Meryl Streep crying, in five different accents. I want to look gorgeous, I want to be buried in a Valentino gown. And I want a wind machine so that even in the casket my hair is blowing just like Beyoncé’s.”She also spoke with courage and faith, urging her congregation “to reflect on who we are, what we value about living, and what legacy we hope to leave our loved ones and our communities. …In the Mishna, Rabbi Eliezer teaches, “Repent one day before your death,” the obvious implication being that every day is an opportunity for Teshuva: turning inward to find and become our best selves.”
Like doctors, clergy are called upon to support people through illness and dying. But--also like doctors—clergy do not all receive training in how to have these crucial conversations. Conversation Sabbath is a gentle way to begin having crucial conversations about end-of-life care wishes with loved ones and congregants. And it is a way to encourage more clergy to be the allies health care professionals like Jeff Dichter have been seeking.
Joining Conversation Sabbath is easy. Simply register your commitment to preach or teach about the importance of talking about your wishes for end-of-life care at The Conversation Project website. The Conversation Project will direct you to free tools and resources for a successful event, including sample sermons.
We encourage Palliative and Hospice care organizations to reach out to community clergy in your service area to encourage them to join Conversation Sabbath this month—or pick any time that fits in their liturgical calendar to share the message that talking matters. Clergy are poised to be compassionate allies to health care professionals serving the most seriously ill. Please share the idea of Conversation Sabbath and cultivate new partners in the shared purpose of reducing suffering for patients, their loved ones, and all who care for them.
Rosemary Lloyd, BSN, MDiv, is the Advisor to Faith Communities for The Conversation Project. A former nurse and Unitarian Universalist minister, she is a champion for embracing the reality of our mortality as a spiritual practice for cultivating courage, compassion, and loving life.
Saturday, November 12, 2016 by Pallimed Editor ·
Wednesday, November 2, 2016
I was fortunate to attend the 2016 CAPC conference in Orlando. Below are some of the most notable pearls I will be taking home with me.
1. Palliative care is about the relief of suffering. This requires a multifaceted approach and is something that case management based or disease management based programs do not address.
2. Palliative care clinicians are uniquely situated to comment on and participate in healthcare transformation. We need to be advocates and “rabble rousers” (per Dr. Martha Twaddle) to encourage our healthcare system to embrace a focus on prevention and well-being, not only on disease.
3. Dr. Diane Meier stated that we need to start looking at the patient as the “sun”, not the healthcare system; and that we as healthcare providers and systems of care need to orbit around our patients to truly deliver person-centered care.
4. Dr. Martha Twaddle noted, in the US we don’t spend more on healthcare but rather on the healthcare industry (hospitals, big pharma, and administration of healthcare). The healthcare industry is likened to a cruise ship that just keeps getting bigger and bigger, while our health outcomes are not improving at the same rate.
5. Social determinants of health (e.g. ability to meet daily needs of healthy food, safe environment; access to health care and education; access to economic opportunities) are incredibly influential on the health of a community. We cannot ignore these issues in palliative care. We need to be part of the broader conversation to improve overall access to care, resources and opportunity for everyone in this country. These issues impact our patients’ and caregivers’ ability to achieve wellness and healing. 6. Community-based palliative care is where the focus needs to be in the next 10 years.
7. Payment for community-based palliative care is difficult, but there are many creative ways to explore these issues, including partnering with ACOs, developing payer contracts with Medicare Advantage plans, grants, philanthropy, etc.
8. Telehealth is now entering the mainstream. The definition of telehealth is wide and includes synchronous (e.g. videoconferencing) and asynchronous (e.g. text, portals, apps) methods. These can be helpful to improve access to care and experience of care.
9. Every program needs to be measuring something, and many programs find this challenging with barriers of complex EMRs, lack of time and resources. Start small, but START. Piloting can be helpful to show the impact of programs to potential payer sources.
10. It’s important to remember that everyone has a story, including hospital administrators, insurance CEOs, and CMS administrators (by the way, the speech by the Center for Medicare Services Chief Medical Office, Dr. Patrick Conway gave me a renewed sense of hope). We saw this at CAPC as leaders in different sectors of healthcare shared their personal stories of loss of a loved one or a dear patient, and how this has impacted their outlook on hospice and palliative care. We all have a stake in good care for the seriously ill. It could be our mother next…It could be us. Tell the story, focus on the impact on the patient and family. People will connect with these stories in a personal way. This will help drive access to the type of care we know will make a difference for people with serious illness.
Bonus Take Home: We in the hospice and palliative care world need to lead the charge in shifting from the “Triple Aim” (improving the health of population, improving patient experience and outcomes and reducing cost of care) to the “Quadruple Aim” which includes an acknowledgement that the care of the patient also requires the care and satisfaction of the clinicians tending to these patients. In fact, our very ability to achieve the triple aim is threatened by high rates of burnout in our physicians and other healthcare providers. Recognition of burnout and self-care are integral components of effective palliative care, and we can be part of the broader conversation to improve the “health” in our healthcare system for ourselves and our patients.
You can find more from the conference on Twitter under the hashtag #CAPCSeminar16.
Laura Patel, MD is the Chief Medical Officer at Transitions LifeCare in Raleigh, NC.
Wednesday, November 2, 2016 by Pallimed Editor ·
Tuesday, November 1, 2016
by Tacy Silverberg-Urian
A cultural transformation of our perspectives on dying and end of life (EOL) care is slowly beginning to take shape. There has been a significant rise in the number of mortality- and EOL-related newspaper articles, books, and documentaries. There has also been a grassroots public campaign called the Conversation Project, which is focused on initiating conversations on dying. The federal government, particularly the centers of Medicare and Medicaid, have proposed various EOL initiatives. In 2014 the IOM (Institute on Medicine) laid out a comprehensive position paper entitled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, Key Findings and Recommendations,” which examines where we are as a culture. Within the paper, the authors present a considerable body of evidence, including comprehensive recommendations for improving EOL care and outreach to underserved minority communities. IOM recommendations include incorporating effective and culturally competent messaging and outreach via various media channels, using linguistically appropriate materials and other effective strategies.
As healthcare professionals, our organizations and non-profits need to test various approaches and forums to better engage our communities in dialogues about death and dying. These conversations must educate participants about the importance of completing advance directives. There is no “one size fits all” approach as people in each community are diverse in their ethnicity, socioeconomic class, age, religion, immigration status, etc. Opportunities exist for different types of outreach when teaching about serious and life limiting illnesses. This week on #hpm chat, we will be discussing various community outreach activities and our participants’ experiences in putting these forums together.
What Family and Caregivers Worry About
One such community outreach activity is to hold a screening of the PBS Frontline documentary “Being Mortal” while engaging a panel of healthcare practitioners in discussion with attendees about questions they have about topics discussed in the documentary. In the documentary, Dr. Atul Gawande, skillfully discusses his experience with life limiting illness: failing health, decision making, healthcare policies and practices, and key conversations needed during difficult times. Atul Gawande, MD, MPH, is an American surgeon, author, and public-health researcher. He is a professor at both the Department of Health Policy and Management at the Harvard School of Public Health and the Department of Surgery at Harvard Medical School. In his book Being Mortal: Medicine and What Matters in the End (2014), he expresses the belief that if physicians took the time to understand their patients when giving the news of a life-limiting illness, care in our country would radically change. He recommends that a practitioner ask the following five questions to gain an understanding of what patients want at life’s end:
- What is your understanding of where you are and of your illness?
- What are your fears or worries for the future?
- What are your goals and priorities?
- What outcomes are unacceptable to you? What are you willing to sacrifice, and what are you not?
- What does a good day look like?
With the screening of the Being Mortal documentary, attendees talk openly about their concerns about the care their family member needs, and who will provide it, the pain of watching their loved one’s health deteriorate, and their goal to alleviate suffering. There’s a sense of a shared understanding and concern in the room, and many people share their stories, experience and perspectives while other attendees learn from their experiences. The sharing of stories provides others with information they may not have known.
Death Conversations and Food
Death over Dinner website provides some great resources to anyone planning an event. It gives step by step guidance to those who need to:
- set the intention for the death over dinner discussion,
- identify topics to be discussed,
- provide reading / video or audio resources for the topic being discussed
- and invite guests to dinner.
With these resources in hand, it makes for an interesting and meaningful interaction between all the guests.
Death Cafe's have been sprouting up across the country to fill an important void. These cafes are places where people gather to drink tea or coffee, eat cake, discuss death, and express their wishes about what would define a good death. Participants may want to attend an event that discusses specific topics, peruse the blog postings on the website or join a discussion and add their voice.
And More Conversations
Another sign that our country is more ready to talk about dying is the launch of the Conversation Project. The Conversation Project began in 2010 when Ellen Goodman and a group of colleagues, concerned media, clergy, and medical professionals congregated to share stories of good deaths and bad deaths within their own circles of friends. A vision emerged for a grassroots public campaign covering both traditional and new media, and this campaign has been attempting to change our culture. Its goal is to make it easier to initiate conversations about dying and to assist people to talk now and as often as necessary so that their wishes are known when the time comes. This vision became a reality when the campaign began its collaboration with the Institute for Healthcare Improvement (IHI) in September 2011. IHI is a nonprofit organization that helps lead the improvement of health and health-care systems throughout the world.
While we may often talk about our wishes, we often never take the next step to completing the required documentation. We've heard the horror stories about family arguments about what a person would have wanted to do in the event of a life altering health emergency. Yet, they are faced with decisions that might have been much easier, had their thoughts and wished been committed to paper, signed, sealed and delivered to everyone who needs to know. National Healthcare Decisions day, is one of those times where people are encouraged to make their decisions known, and fill out the forms. Like Death over Dinner, the NHDD website provides resources and guidance to people hosting an event to help to lead the discussion. Aging with Dignity provides the Five Wishes form that can be easily used to write the advance directive and can be completed anytime, but most definitely at an event on National Healthcare Decisions Day.
Join us this week with cohost Tacy Silverberg-Urian to discuss community outreach in hospice and palliative care.
Tacy has worked for almost forty years in health care as a direct-care provider, clinical manager, hospice administrator, nurse leader and strategist. Author of The Last Mile of the Way, Multiculturalism and Diversity--a book about the importance of cultural competency at the end of life. Passionate CHPN, community liaison and baby-boomer who wants to "right" death.
When: Wed 11/2/2016 - 9p ET/ 6p PT
Host: Tacy Silverberg-Urian @tacyrn_tacy
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Tuesday, November 1, 2016 by Niamh van Meines ·
Monday, October 31, 2016
by Emily Riegel
Your patient* is a 60 y/o male with refractory AML, admitted with pneumonia. He is on broad spectrum anti-microbial therapy, including anti-fungal therapy, and has been stable since admission. Your team have been consulted to assist with pain management. His pain is pleuritic in nature, exacerbated by “twisting” or movements that involve change in position of his chest wall. It is not constant, and he has periods of time with no pain whatsoever, as long as he remains fairly still in his upper body. He has no other chronic or long-lasting pain issues. His primary team has written for him to have oxycodone immediate-release 10mg by mouth, which he is using 5-7 times a day, as well as hydromorphone 1 mg IV, which he is using 5-7 time daily in addition to the oxycodone.
You round on the patient over the weekend. As he does not have continuous or chronic pain, you decide not to add a long acting agent. You transition him to a single-opioid regimen of hydromorphone IV or PO as he felt the hydromorphone was more effective than the oxycodone. You also opt to add dexamethasone 4mg by mouth daily, starting on Saturday morning, as an adjuvant for pain control. The primary team agrees with your plan for a brief, 2 day course of dexamethasone. By Sunday afternoon, your patient reports he had little to no pain, was able to now walk 10 laps around the unit, and required only 2 doses of PO hydromorphone in the past 24 hours.
In discussion with your colleagues at Monday morning handoff, one of your partners raises a concern about the use of a steroid in a patient with an active infection and an immune system already compromised by AML. Although you have frequently utilized steroids as an adjuvant for pain control as well as in the management of a multitude of other symptoms, and have done so with the blessing of the primary physicians, you find yourself now wondering if the concern over immunosuppression ought to be of greater concern to you.
To the literature we go!
Not surprisingly, upon research of this topic there is no literature that directly addresses this clinical question. Let’s look at what we can find, though. Use of glucocorticoids (we will henceforth simply use the term “steroids”) in the management of severe infections has been well documented in literature. It continues to be recommended for patients with severe septic shock, especially when hypotension is refractory to adequate fluid resuscitation and vasopressor treatment1.
There are also several studies, including multiple meta-analyses2 and a fairly recent randomized control trial that actually show an advantage in the concomitant use of steroids in managing community acquired pneumonia3.
In what may be the most similar scenario to your patient in terms of anticipated duration of steroid use, a literature review of use of single dose steroid to prevent post-op nausea and vomiting and risk of infection/delayed wound healing did not find increased occurrence of infection across multiple included studies4.
Although there is no definitive, absolute proof that use of dexamethasone as an adjuvant agent for symptom management does not confer a potential increased risk of infection, we do have literature indicating that steroids are used to help manage and treat certain infections, and that there has not been evidence of increased new infections when used in a single dose post-operatively. The clinical take away here is that it okay to consider the use of a steroid, especially in a low dose for a short period of time, in managing pain of an inflammatory etiology (such as pleurisy), and when compared to the potential risks of other pain management strategies such as systemic opioids.
Emily Riegel, MD, is a Med/Peds Palliative Care Physician at the University of Kansas Health System.
- Casserly B, Gerlach H, Phillips GS, et al. Low-dose steroids in adult septic shock: results of the Surviving Sepsis Campaign. Intensive Care Medicine. 2012;38(12):1946-1954. doi:10.1007/s00134-012-2720-z.
- Nie W, Zhang Y, Cheng J, Xiu Q. Corticosteroids in the Treatment of Community-Acquired Pneumonia in Adults: A Meta-Analysis. PLoS ONE. 2012;7(10). doi:10.1371/journal.pone.0047926.
- Torres A, Ferrer M. What’s new in severe community-acquired pneumonia? Corticosteroids as adjunctive treatment to antibiotics. Intensive Care Med Intensive Care Medicine. 2015;42(8):1276-1278. doi:10.1007/s00134-015-4042-4.
- Assante J, Collins S, Hewer I. Infection Associated With Single-Dose Dexamethasone for Prevention of Postoperative Nausea and Vomiting: A Literature Review. Accessed October 4, 2016. (Open Access PDF)
*Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. The case and discussion is published as a means to illustrate important teaching points in healthcare. Patient details may have been changed by Pallimed editors to ensnure anonymity. Links and minor edits are made for clarity and Pallimed editorial standards.
Monday, October 31, 2016 by Pallimed Editor ·