Friday, January 20, 2017

The Dying Don’t Need Your Permission to Let Go

by Lizzy Miles

A couple of years ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying." Having knowledge of our assumptions is a first step, but what do we do with that knowledge? Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the seventh in a series of articles where I take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions. In my last article, I wrote about the assumption that hospice patients will reveal the secrets to the universe.

Here is our next assumption: You should tell your loved one, “It’s okay to let go.”

The idea that a dying person is waiting for permission from their loved ones permeates many articles about the final days of dying. There is some truth to the idea that some patients may linger because they worry about the ones they are leaving behind. However, this concern about the bereaved is only one of many possible reasons that patients do not die when we think they should.
Consider this. How do you know it is okay to go? Have you died before? Do you know what it feels like? No, you don’t--none of us do. Dying is scary stuff, even for patients who have a strong belief in the afterlife or heaven.

Several years ago I had a patient, “Betty,” who told me that she was not afraid to die because she had a vision of her deceased husband and he told her everything was going to be okay. Then one day I was called to the house because she was “dying.” The chaplain, an aide, a few family members and I stood around the bed. The chaplain began to play music and the patient yelled out, “NO” several times. The patient continued to be in distress until we stopped the music and everyone left the room. She calmed down immediately. In hindsight we realized we had put pressure on her to die before she was ready. She died a few days later in the early hours of the morning with her favorite aide by her bedside.

Intervention: Provide education to the family of what it might feel like to be the patient, and how dying might be scary to contemplate.

When my aunt was dying, we had the bedside moment with all the family members praying and then my cousin stopped and said she was going to run an errand. I thought she was having a tough time and had to step away from the situation. That wasn’t the case. She told me later that at the time we were praying, she heard her mom’s voice in her head, saying, “I don’t know what you’re all doing, but I’m not going anywhere right now.”

Intervention: Suggest to the family that they could also tell the patient that it’s okay for them to take their time if they aren’t ready.

On more than one occasion I have had friends and family question why a patient hadn’t died when they had told them it was okay to let go. The first thing I do is normalize their feelings of uncertainty and the difficulty of not knowing when. Often in these situations I explain the phenomenon of timing. I tell family members that dying is like planning a dinner party. There are a lot of components that need to happen for someone to be ready to go. I tell them sometimes a patient waits for someone to arrive and sometimes a patient waits for someone to leave. I instruct the family to not worry too much about the right conditions because they are difficult to anticipate and rarely what we expect. I tell the families that it will all make sense ‘afterwards’.

I had one woman who was questioning me on the length of time it took for her husband to die and I gave her a short example of another situation in which the patient was waiting for his spouse’s sister to arrive. Oddly enough, that was exactly what happened again. These patients weren’t waiting to see someone for themselves, they were waiting for someone to arrive who would be a source of support for the ones left behind.

Intervention: When providing education about talking to patient, normalize the caregiver’s feelings. Use non-specific anecdotes in brief if they are helpful to illustrate the situation.

One of the more challenging aspects of bedside hospice work is for staff to leave their own expectations and ideals at the door. The best advice I was given as a new social worker was to remember the acronym “NATO” which means Not Attached to Outcome. While we can give suggestions to families and friends on how to talk to or be with their loved one, we have to remember to stay neutral if they do not follow our guidance.

There are times where we, as staff, express our concern about patient situations behind the scenes. Have you heard a coworker express concern or thought to yourself:

There are “too many” people in the room.
Why aren’t they talking to the patient?
Why would they talk about those topics in front of the patient?
How could they talk that way in front of the patient?
Why isn’t there anyone at the bedside?
Why won’t the caregiver tell the patient it is okay to “let go”?
Why won’t they leave the patient’s bedside, even if for just a minute?

Caregiver actions at the bedside can sometimes confound and unsettle us because of our own ideas of a “good death.” However it is not up to us to define. We may actually be the ones who have to “let go” of the idea that we know what’s best for our patients.

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.

Friday, January 20, 2017 by Lizzy Miles ·

Wednesday, December 7, 2016

Decision Making at the End of Life: Joint #patientpref and #hpm Tweetchat

By Meredith MacMartin

Fred was a sick guy. He had been diagnosed with COPD years ago, and more recently developed heart failure, and although he and his wife Nancy tried to stick with his medication regimen and monitor his salt intake, his shortness of breath had been making it harder and harder to even get around the house. He followed regularly with his primary care doctor, and talked about what he would want in terms of medical care if and when he got sicker. His wife knew that he didn’t want to go to the hospital if it could be avoided, and that he definitely did not want to end up in an ICU on a ventilator, or getting CPR. In addition to having those conversations with his wife and PCP, he had even had an portable DNR form completed. Fred, his family, and his physician did everything they could to prepare for the eventuality of his disease worsening.

One morning, Fred’s shortness of breath got worse. This happened from time to time, and usually resolved with use of his rescue inhalers; Fred used his albuterol as often as he could through the morning and into the afternoon. By late in the day, his breathing was markedly worse, to the point that he was so short of breath he couldn’t get up off the couch and could hardly talk. Nancy had been asking him all day if she needed to call his doctor and had waved her off, but now, with Fred gasping for air, Nancy knew she had to act. She called 911, over Fred’s objections. EMS arrived, and after a rapid assessment realized that Fred was in serious trouble. They told Fred and Nancy that he needed to go the ER right now, Fred was in no position any longer to argue and Nancy was terrified. She climbed into the front seat of the ambulance and rode with them. En route to their local hospital, she heard a commotion in the back of the ambulance, and looked back to see CPR being performed on Fred. She didn’t know what to do or say. She watched as the two first responders worked on Fred and eventually regained a pulse.

Between the time Fred arrived to his local hospital, and the time of his transfer to our tertiary care center, he had undergone a total of four rounds of CPR, totaling more than 20 minutes of resuscitation. He was intubated, and on multiple vasopressors. He was placed on our hypothermia protocol for neuroprotection, but despite discontinuation of his sedating medications had shown no sign of spontaneous movement or response to stimulus. Nancy and their son met with ICU team, who let them know that although Fred was currently relatively stable, there was a high level of concern for very serious anoxic brain injury. The ICU team reviewed their options: continue aggressive care on a time-limited basis (another 24-48 hours) to watch for changes in his neurologic status, or withdrawal of life-sustaining treatment now. Nancy didn’t know what to do. She felt intensely guilty that she had allowed this to happen to Fred, after they had talked about his wishes. At the same time, she hoped desperately that he might be able to beat the odds and pull through this. She felt overwhelmed by the immensity of the decision that faced her.

This case is adapted from a recent patient encounter. So often we read about patients and families who put off talking about goals for end of life care, but here is a case in which Fred and Nancy had done the hard work of planning. He even filled out a portable DNR! And yet, Fred died in the ICU after 48 hours of aggressive care. His wife Nancy loved him, and wanted to do the right thing for him, and his ICU team had an early conversation with her about the likely outcome. Why then, did Fred end up getting medical care that was different than what he had planned on?

Making medical decisions is often a messy endeavor. Uncertainty and emotional response to illness can combine to make even straight-forward discussions feel overwhelming and traumatic. In the setting of serious illness, or at the end of life, the stakes get higher and so the intensity of the decision-making is increased as well. Join us for a special #hpm and #patientpref joint Tweetchat to examine the process of making decisions at the end of life, looking at the current state of affairs, barriers to success, and best practices to supporting patients and families at this vulnerable point in their lives.

Topic questions:
T1: How do people make decisions at the end of life? Who is actually making those decisions, and what do they find most helpful? How helpful is pre-planning, really?

T2: What are barriers to good decision making at the end of life?

T3: What are examples of ways that decision making at end of life can be done well?

We’ll start the conversation on Wednesday December 7 12pm ET with #patientpref chat, and continue at 9pm ET with #hpm. Join us for one or both chats, and see how the conversation evolves!

Wednesday, December 7, 2016 by Meredith MacMartin ·

Saturday, December 3, 2016

In the Company of Death; In Consortium Mortis

By Mark Ligorski

#1.  Beginnings

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.

Dr. Mark Ligorski is a psychiatrist in private practice in Danbury and Norwalk, CT.  He is also the psychiatrist for the Regional Hospice Center for Comfort Care & Healing in Danbury, CT. An Assistant Scoutmaster for many years, he and his son climbed Mt. Kilimanjaro twice. His mother, who does not approve of mountain climbing, still wishes he had become a real doctor.

Saturday, December 3, 2016 by Pallimed Editor ·

Saturday, November 19, 2016

How Reimbursement Is Changing For Palliative Care - MACRA

by Stacie Sinclair

(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!

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.

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!

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 –!

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

Saturday, November 19, 2016 by Pallimed Editor ·

Wednesday, November 16, 2016

FAQ for New Hospice Volunteers: 15 Simple Questions You're Afraid to Ask

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?"

Other tips:
•  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.

Other tips:
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

A Collaborative Journey to Transform Advanced Illness Care

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?
Topic questions:

  1. How can we expand the concept of advanced illness care beyond traditional healthcare settings?
  2. How can healthcare professionals, social services, and community supports form a safety net for individuals with advanced illness, their families, and caregivers
  3. 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

 and go to for up to date info.

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For more on past tweetchats, see our archive here.

Tuesday, November 15, 2016 by Meredith MacMartin ·

Monday, November 14, 2016

Symptoms of Cancer May Include Fatigue, Unexplained Weight Loss, Fever and Foreclosure

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.

Some patients we meet have to surrender jobs when they are diagnosed with cancer, leaving them with no income and a precarious living situation. Applying for Social Security Disability often takes months and requires precious energy that many of those with cancer do not have. Other benefits such as food stamps (SNAP), Medicaid and subsidized housing demand applications. Once on such benefits, life can become somewhat easier, financially, although maintaining all these resources takes a detail-oriented focus to ensure that renewal applications and deadlines are not missed and that prolonged hospitalizations do not result in unpaid 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

The Illusion of Impermeability

by Laura Patel

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

The Doctor and the Rabbi: A Healing Conversation About End-of-Life Care

by Rev. Rosemary Lloyd

“It routinely makes me hurt inside when patients and family are admitted to an ICU, as most have rarely if ever considered what care they truly want, or not. It is heart breaking to try and help them assimilate it all, and all too frequently decisions are left for families, with left over feelings that may linger for years.”

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

10 Take Home Lessons from the CAPC 2016 National Seminar

By Laura Patel

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 ·

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