Monday, August 18, 2014

A Handful of Medication: The challenge of pill burden

If you’ve ever helped as a caregiver to someone in the twilight years of their life, or perhaps you yourself are at this stage, you may have noticed when it was medication time that there were a lot of pills. It is true there are exceptions to this rule, those individuals who only take one or two medications a day. However this is the exception, and there doesn’t seem to be much middle ground. Either you are on pages worth of medication, or hardly any as you begin to enter the last stages of life.

The first question is, how does this happen? A large culprit to this phenomenon stems from the expectations for the doctor/patient encounter. When a patient comes to see a provider with a specific complaint, they expect a remedy. The unspoken words from every patient are “fix me”. While most complaints aren’t easy to alleviate quickly, culture demands instant relief. Thus, handing out a new medication for a complaint certainly feels like the problem has been addressed. This is not much different to what happens when my 3 year old skins his knee. He has been enculturated to believe that with any scrape a Band-Aid is the ultimate solution. As a parent, I can tell that most of his injuries medically don’t need Band-Aids, and yet when I relent I’m amazed at the immediate soothing effect it has because something has been done to “fix” him. Medications at times are like Band-Aids, they may not be essentially needed, but we expect something from them, and so in turn, they pacify us.

The next issue with medications is the tendency that once started they are never stopped. Someone comes into the hospital for knee surgery and complains of indigestion due to anxiety about the surgery, so an antacid is prescribed. The person is discharged with the new medication, and years later are still taking it, despite not medically needing it. When I put a Band-Aid on my 3 year old, it takes some convincing after a day that I can remove it, because he is now healed. How funny it would be if we left Band-Aids on indefinitely, never evaluating if the injury healed. Yet this is often the case for pills, started by other specialists, or for specific reasons in the past, we trust their benefit, like the Band-Aid, without pondering if still needed.

When it comes to end of life, the harm of over prescribing and not eliminating medications is something called ‘pill burden’. Patients fatigued from their disease and having more difficulty swallowing become burdened by the handful of medications we expect them to take. Many pills can be eliminated because of the above scenarios, but even more can be stopped when we evaluate why someone is taking the pill in the first place.

Many medications prescribed are preventative, meant to stave off unwanted future risks. Some of these drug classes are blood thinners, cholesterol lowering agents, blood pressure medications, dementia medications, and all vitamins. These agents are meant to prevent things years in the future, so it makes no sense continuing them on hospice when time is limited.

Pill burden doesn’t just occur at the end of life. It’s okay to be an advocate and sit down with your physician to discuss the necessity of medications prescribed. The key is to ensure the pills you take are working for you, because it can be work to take them in the first place.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: iStockphoto

Monday, August 18, 2014 by Amy Clarkson ·

Friday, August 15, 2014

We Don’t Know Death: 7 Assumptions We Make about Dying

(Welcome a new contributor to the Pallimed Blog! Lizzy Miles, MA, MSW, LSW is a hospice social worker in Ohio who has also contributed to the Pallimed: Arts and Humanities site with a post on bucket lists in a Smurfs game. Yes, you read that right. She is best known as the the person who brought the Death Cafe concept to the US. We are very excited to be working with Lizzy! - Ed.)

The worst thing anyone ever said to me was, “You think you know everything, but let me tell you:  you don’t know jack!” I was six weeks into my social work internship at a hospice and it was my student supervisor who decided I needed an attitude adjustment. Needless to say, I didn’t stay there. I was angry and hurt for a long time but now I’ve come to realize that while his delivery was awful, the message was relevant.

It is now five years since my student supervisor told me that I didn’t know everything. I have to admit he was right. The most important thing I’ve learned from my work in hospice is “knowing” can be dangerous for hospice staff. We take a situation that seems similar to one we have seen before and we can fall into the trap of assuming the outcome will be the same. Our patients and families take what they think they know from media or prior experience and apply expectations. The following lessons have been taught to me by many people I have worked with.  The cases below highlight these assumptions and are composited from many experiences.

Assumption #1: If you have experienced a death, you know how death happens.
I can recall a situation with a person who had no local family and so the private pay aides that took care of her were her “family.”  She had a terrible UTI and had chosen to not take antibiotics. Her doctor visited her at home and informed her it would be about three days before she died. When I went to visit, all of her aides were present. I had asked if they had been bedside before and they all said they had. They said they knew death and yet there was nervous energy in the room. After talking with them more I discovered why there was an unsettled feeling. The client was still alert and awake and this had contradicted the aides’ prior experiences and expectations of how people die.

Assumption #2: You’re supposed to be unconscious when you’re about to die.
At least that is how the aides' previous experiences had been. They were not used to a client who was fully awake, making jokes and quite feisty. I had this assumption too for a long time until experience showed this was not always true.

Assumption #3:  Family will want to be with their loved one when they are dying.
I’m sure we have all heard a fellow clinician telling an out of town relative, “You will want to get up here quickly, your mom is transitioning.”  I once heard that and cringed  because I had already had a conversation with the son where he said his last visit with his mom was good and that he didn’t think he would come up to see her in the facility until it came time to plan the funeral. I now make it a point to ask the question at admission and share the results with the hospice team. When given the permission to acknowledge their true feelings, family members are grateful to be able to admit it if they do not want to be present at a death.  Clearly it is still important to notify these family members when their loved one is actively dying, but in a way that does not pressure them into making a visit.

Assumption #4: People don’t want to be alone when they die.
Some families sit vigil all night and all day and then patient dies when they briefly leave the room. After I ask a family member whether they want to be there during the dying process, I inform them there is a chance that they may not present at time of death. As a bereavement counselor, you see so many cases where people feel guilty for “not being there.”  It can be helpful to set the expectation early that dying is a private experience and the person may die when family and friends are not there. We discuss how their loved one may not be able to “let go” while they are there. This information can help caregivers to take the pressure off themselves.

Assumption #5: Family matters will get resolved.
We have to let go of the romanticized notion of resolving 30-year old disputes at the deathbed. This applies to patient relationships with family but also to relationships between other family members. Unresolved conflict can be difficult for some hospice staff to accept. We should not go overboard in trying to set up a reunion because of our own ideals. We have to remember it is not our family and we don’t have the complete picture.

Assumption #6:  The secrets to the universe will be revealed.
I think the movie industry has contributed to the idea of deep revelation at the end of life. Some people just don’t go there. We need to set expectations with families that not everyone has a big reveal, a big insight or a big goodbye. I admit I’ve been guilty of this. A 99 year old client set me straight.

Assumption #7: You should tell your loved one, “It’s okay to let go.”
There is the common thought that sometimes patients need permission to go, but that is not always what is holding them back.  I’ve had hospice patients who tell me they are not afraid to die, but when they are actively dying they suddenly become fearful.  This fear can lead to patients “hanging on.”  Fear of the unknown can be a powerful motivator to stay alive.  If it is fear that is keeping a patient alive, telling them “it’s okay to let go” may just put unnecessary pressure on them to go before they are ready.  While hospice patients have known that their death is predicted, the actual reality of dying can be overwhelming to face.  It takes time to process... and sometimes permission to stay until they’re ready to go is really what’s needed. 

The more I know about dying, the more I know that I don’t know.  But how well does one really want to get to know death anyways?

Photo Credit: Emily Riegel

Friday, August 15, 2014 by Lizzy Miles ·

Tuesday, August 12, 2014

When I Walk: What Living With Multiple Sclerosis Is Like

Think about what you did to get ready this morning. 

If you are able-bodied that is a relatively simple thing right?  To get out of bed, use the bathroom, get showered, get dressed eat some breakfast and then get out and go somewhere else. 

But what is not just getting ready but living life like for people with disabilities?

Jason DaSilva gives a very personal insight of what it is like to have a progressive disability as he documents his life with multiple sclerosis in the documentary “when I walk”. 

At age 25, DaSilva was a successful independent filmmaker who after noticing his vision was blurry and he was walking funny he gets evaluated and is diagnosed with primary-progressive multiple sclerosis. Being a filmmaker he turns the camera on himself and makes a documentary showing the very personal evolution of how his life as he knew it was “turned on its head”. He filmed every day over the span of 7 years. The result is a documentary that captures the emotions, feelings, and the human experience as DaSilva shares the ups and downs of living with a progressive illness. There are the struggles of navigating physical challenges, desperately trying every possible treatment, dealing with the emotions of not being able to do the work he loves to do and the frustration of his progressive dependency on others. 

We witness how over the span of just a few years with multiple sclerosis DaSilva goes from using a cane, to using a rollator, a wheelchair and a scooter. A progression that a tearful DaSilva tells us he didn’t think would happen so fast.

Here are some quotes from parts that touched me of the documentary: 

 ● DaSilva shares with us his thoughts and fears
“It makes me feel nervous about what the future will hold” “I walk around like a normal person and but inside my body is at war” [the immune system fighting the nervous system]
●Meeting, dating and marrying Alice Cook
“My mom said to go to a MS support group. I met a girl there her name is Alice, her mom has MS. I got her number so we can ‘talk about MS’ ”. Jason DaSilva
DaSilva: “Don’t you wish you were with someone who was able bodied?” Cook: “Yes but I wish it was you who was able-bodied.”
●The burdens and challenges of being a caregiver
“I feel really guilty [about going on a trip alone] but I’m on the verge of insanity and I have to leave for my sake. I have been taking care of you for like two years straight.” Alice Cook
“ You take like twenty pills all at once and they all interact with each other” Marianne D'Souza (Jason DaSilva’s mother)
●The uncertainties of life
"It’s hard to know where our stories are going while they are being written. That is the mystery of faith it’s always a surprise." Jason Dasilva
So remember how I started this blog-post with the thought about what it takes to get around for someone with disability? DaSilva actually did an experiment comparing the time it takes an able-bodied person to get from Brooklyn to New York using public transportation and blogged about it in the NY times. He also created AXSMAP a crowd-sourced tool for sharing the wheelchair accessibility of businesses.

Ready to check out the film for yourself?  Make sure you have facial tissues handy.

If you are interested you can purchase the when I walk film from several sources.

If you are in the US you can  stream it from PBS Through August 22, 2014.


Did you watch the film and want some extras?

Dr. Jeanette Ross will be hosting a Tweetchat on Chronic Illness and the role of hospice and palliative medicine Wednesday August 12th at 9p ET.  Search for #hpm on Twitter and join the conversation.

We also recommend you 

Photo Credit: Director Jason DaSilva takes a walk in Goa, India. From WHEN I WALK, a Long Shot Factory Release 2013 

Tuesday, August 12, 2014 by Jeanette Ross ·

Wednesday, July 23, 2014

#hpm Tweetchat 07.23.2014 - The Importance of Language

Language represents symbols and the meaning of those symbols depends on the nature of our interaction. When sitting in a clinic and receiving bad news, patients will cling to every word. Doctors may choose words carefully, avoiding some terms and emphasizing others. Patients and families, listening carefully to each word, walk away from these emotionally charged interactions, often hearing different words, and many times finding different meaning. Vinay Prasad studied the written words used in the Oncology literature, specifically the word “cure”. Defining cure as the chance someone will die of cancer being no greater then that of the age of their peers in general population dying of any cause. However, he found that nearly half the oncology literature uses the word cure to describe diseases that are considered incurable, that do not meet that definition. So, what do is meant by cure?

Another equally confusing term is “fight”. What does it mean to fight cancer? Perhaps even more important, what does it mean to “lose the fight?” Stuart Scott received the Jimmy V award at last weeks ESPYs. Although the language of a battlefield was used throughout the talk, he introduced a new twist when he said, “When you die that does not mean you lose to cancer. You beat cancer by how you live”. Fighting cancer or learning to live with cancer, its a matter of language, its a matter of perspective. Choosing to “fight” or choosing to “live”, we must choose our words carefully.

We will be exploring both of these topics in depth during the #hpm Tweetchat tonight.  We hope you will join in the discussion with us.

-Debra Parker Oliver, MSW, PhD, University of Missouri, Columbia

What: #hpm Tweetchat
When: Wed 7/23/2014 - 9p ET/ 6p PT
Host: Debbie Oliver 
Facebook Event Listing:

T1 What is a "cure?" How does the meaning of the word cure change in different situations? #hpm

T2 @StuartScott gave a moving speech at the @ESPYs this month. Please watch/listen and let's discuss: #hpm

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, for ease of following.

We will be posting the transcript and analytics here after the chat takes place.
Chat Transcript and Chat Analytics courtesy of @Symplur

Wednesday, July 23, 2014 by Christian Sinclair ·

Wednesday, July 16, 2014

Hospice and Palliative Medicine Tweetchat reaches 200th chat

When I first began exploring the health care Twittersphere in late 2008, there were not a lot of people there, and explaining it to others and expand the network was pretty challenging. Six years later, the understanding of Twitter as a space to advocate and influence is well understood in the realms of sports, entertainment, politics and news. Well, we too in hospice and palliative care have made a significant impact on Twitter even if it is in the smaller niche of Health Care.

One of the tent poles for people to gather and find each other has been the weekly Hospice and Palliative Medicine Tweetchat. Having seen the success of the Healthcare Social Media (#HCSM) chat hosted by Dana Lewis (@DanaMLewis), I thought we could do something similar with the HPM community. With the assistance of co-founder Renee Berry (@rfberry), we started the chat on July 14th, 2010. Since then, on every Wednesday (barring significant holidays) there has been a chat on Twitter highlighting hospice and palliative medicine issues for four years and tonight we will have our 200th chat. In a social media world where everything seems ephemeral, this is something you can depend on.
The #hpm hashtag (remember when you didn’t understand what that was?) is quite active through the whole week. For stats on the participation in #hpm, you can check out Symplur’s wonderful Healthcare Hashtag site.

Many of the people who participate have mentioned that the weekly chat serves as self-care because of the camaraderie and support. I know many of the people I have met through these chats have become good friends, regardless if I have met them in person yet, although I always look for the opportunity. Thank you to all of the people who have participated and moderated over the past four years. It truly is a community effort.

We invite everyone to come tonight to join in with the celebration of volunteerism, advocacy, communication, shared goals, and communication. If you used to join often but life’s circumstances changed, please come back tonight and say hello. If you are still a little wary, and not sure about it, use to watch the conversation (and maybe join in). If you cannot make it tonight, set a reminder in your calendar until it becomes a good habit! For those of you who will always be Twitter-averse (which is okay!), we will be brainstorming tonight on how to re-purpose the discussions from each weekly chat to reach new audiences.

Looking back at the first post about #HPM Tweetchat, the reasons to participate still resonate:
So why is something like this important?
  • A Tweetchat creates content that might spread
  • A Tweetchat lures other people into the conversation
  • A Tweetchat places you on the map
  • A Tweetchat connects people
  • A Tweetchat increases your sphere of influence
  • A Tweetchat exposes you to new ideas and resources
  • A Tweetchat is a place to get questions answered

(And if you were wondering why we chose #hpm and not the more inclusive #hpc, well Twitter was dominated by tech early adopters and #hpc was primarily used to discuss HP computers. #eol or #eolc were also too restrictive and reinforcing of the common bias that we help only at EOL. #hospice and #palliative are in more common use now as is #hpmglobal.)

Wednesday, July 16, 2014 by Christian Sinclair ·

Wednesday, July 2, 2014

Deadline for Comments on HPM Fellowship Update July 2

Apologies for the late notice, but I only heard yesterday about the deadline today (July 2, 2014) to the ACGME update to the Hospice and Palliative Medicine Fellowship requirements.  These updates do not come around too often and this is the first significant chance for an update since the accreditation became official in the late 2000s.

Here are some of the key files for your reference:
Impact Statement (only 5 pages - summarized below)
Program Requirements (24 fun-filled pages)
Review and Comment Form (you need to complete this and send it to

Whether you agree or disagree it is important to offer feedback either through your official representation from your institution or even as a clinician or advocate for hospice and palliative medicine.  So here is a quick summary of some (not all) of the changes and why I think they may be critical to the future of our specialty.

1) Increasing the hospice experience from 8 weeks to 10 weeks

When I first heard the requirements for hospice experience were placed at only 8 weeks in the first edition of these guidelines I was quite surprised.  My fellowship experience was based out of a community hospice, and the one I helped found in Kansas City was also initially born out of a community hospice.  So a good balance in my eyes, was more around 50/50.  I think this is a step in the right direction.  I wish it was from 8 weeks to 12 weeks, but I'll take what I can get to advance the competencies of HPM clinicians in hospice. Of note a pediatric palliative home care experience can be an adequate substitute for a Medicare or a VA based hospice experience.  I do think all programs should have exposure to pediatric HPM, but not necessarily at the expense of a shortened hospice experience.

2) Changing the fellowship requirement to a total of 12 months instead of a duration of 12 months.
The duration of a fellowship program in hospice and palliative medicine is 12 months. A fellowship program in hospice and palliative medicine must consist of 12 months of education in the subspecialty. 
This change allows the flexibility to include mid-career learners who may not be able to devote an entire 12 months straight to a fellowship program.  And with the current growing HPM workforce shortage, we need flexibility to train HPM specialists.

3) Increasing the protected time for a program director to 20-50%

Original language was vague and left it up to the institution to set the time aside.  If we are to have strong programs across the nation, then we need PDs who are protected to develop great programs, and not just working into the wee hours

4) Faculty to match the program size
In addition to the program director, there must be at least one other hospice and palliative medicine physician faculty member who devotes at least 10 hours per week on average sufficient professional time to the program. For programs with more than two fellows, there must be additional at least three hospice and palliative medicine physician faculty members.
I came from a single faculty program way back in 2003-4.  The teaching was great, but I could see the concern about smaller programs not providing a broader knowledge and skill foundation when you are limited to one faculty member. It would be great to support some of the smaller programs with some of the support found in the PCHETA bill to establish more faculty in HPM.

5) Decrease longitudinal patients across settings from 25 to 10

This is a no-brainer.  This requirement is a good idea in theory, but in reality it is really hard to execute even with the best intentions and frequent reminders.  So 10 seems an achievable number that allows for exposure to the importance of continuity, but it is realistic when factoring in fractured health care delivery systems and a premium on the fellow's time.

If you like all those things then here is something basic you can add to the 'General Comments' section (feel free to personalize/edit:
As a hospice and palliative medicine/care clinician, I reviewed the impact statement to the hospice and palliative medicine fellowship program requirements.  I agree with the changes being proposed, especially the following:
Requirement Int.C. - Flexible scheduling of fellowships for a total of 12 months
Requirement II.A.1.b - Increased protected time for program directors
Requirement II.B.1.a)-b) - Adequate number and dedicated time for faculty
Requirement IV.A.3.e)e).(1) - Increasing the hospice experience from 8 weeks to 10 weeks
Requirement IV.A.3.k) - Decreasing the longitudinal requirement from 25 to 10 patients

Wednesday, July 2, 2014 by Christian Sinclair ·

Friday, May 30, 2014

Cases: Legacy Projects at the End of Life


F.B is an 90-year-old woman who initially presented with chest pain and shortness of breath and was found to have a large descending aortic aneurysm. Her aneurysm was not amenable to surgical correction, so F.B. was discharged home with hospice for medical management.  She was interested in sharing her life’s experiences, so a legacy project was initiated.  During the course of the legacy project, F.B. became withdrawn from her friends and family and often felt anxious and depressed.  A long conversation was held with her, and she admitted the legacy project brought back memories of her husband whom she missed dearly.  She also admitted that through the project she was reminded of asset allocation and felt sad by her daughter’s anger regarding distribution of the items.  F.B. eventually completed her legacy project but had difficulty with a segment that involved recording a message to her daughter.  She often expressed worry about the legacy she was leaving behind and how materialistic her life’s memory had become.


Suffering, both physical, psychological and existential, is an important topic for seriously ill patients (1). The 2005 National Consensus Project on Quality Palliative Care highlighted the importance of understanding and addressing patients’ emotional and spiritual needs (2). Emotional and spiritual suffering are important factors that can contribute to the development of patients’ and caregivers’ depression and anxiety (3,6).  Various interventions are available to address emotional and spiritual distress.  One example is legacy project. These projects provide meaning-based coping through the creation of a lasting memento summarizing one's life.

Everyone has a story to tell.  This is a basic summary of legacy project’s purpose.

Legacy projects are individually tailored to help patients discuss life review, accomplishments, and heritage at the end of their life.

Hospices offer legacy projects to all patients well enough to communicate.  Examples of legacy projects include videotaping or writing stories or letters, creating handprints, recording music, or collating artwork, pictures, recipes, favorite prayers, or poems.  Some legacy projects are larger than others but all leave a mark on the patient completing the memory, the family and friends who receive the memory, and the staff and volunteers who help complete the work.

Most organizations depend on trained social workers and volunteers to create and maintain legacy projects.  There is no cost to the patient or caregiver for the project.  Hospices often receive money from donors and grants to fund legacy projects.

StoryCorps, an independent nonprofit organization that partners with National Public Radio (NPR), helps collect stories nationwide to archive in the Library of Congress.  They offer grants to smaller nonprofits and provide a mobile unit with equipment and transcription training to collect stories of patients and families.  Recently StoryCorps completed a project with Forbes Hospice in which several patients and families told their stories.

There is little data on the impact of legacy projects on patient and caregiver rates of depression and anxiety.  Two small studies demonstrated decreased rates of depression and anxiety in patients at the end of life who were involved in legacy projects (4, 9).  However, as demonstrated in our case, legacy projects can bring up questions that are uncomfortable and distressing to patients, affecting their quality of life.

1.      Spirituality, religion, and healing in palliative care; Puchalski CM, Dorff RE, Hendi IY; Clin Geriatr Med. 2004 Nov;20(4):689-714.
2.      Clinical Practice Guidelines for Quality Palliative Care. 2005. (Accessed at
3.   Irwin S, Block S. What Treatments are Effective for Depression in the Palliative Care Setting? In: Goldstein N, Morrison RS, ed. Evidence Based Practice of Palliative Care. Philadelphia: Elsevier; 2013:181-9.
4.      Seriously ill patients’ discussions of preparation and life completion: An intervention to assist with transition at the end of life; Steinhauser K, Alexander A, Byock I, George L, Tulsky J; Palliative and Supportive Care (2009), 7, 393–404.
5.      Story Corps: About Us and Programs-Initiatives. 2014. (Accessed at
6.      Bryant RA. Prolonged grief: where to after Diagnostic and Statistical Manual of Mental Disorders, 5th Edition? Current opinion in psychiatry 2014;27:21-6
9.      Allen, R., et al. (2008). Legacy activities as interventions approaching the end of life;  Allen, R., et al.; Journal of Palliative Medicine. 2008; 11(7): 1029-1037. (Open Access PDF)
Original Case by Sonia Malhotra, MD, Edited by Christian Sinclair, MD

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in healthcare. Patient details have been changed by Pallimed editors to help with anonymity.

Friday, May 30, 2014 by Christian Sinclair ·

Wednesday, April 30, 2014

Prison Terminal: The Last Days of Private Jack Hall

Until I watched the documentary prison terminal I had not given much thought to what the end of life is like for a prisoner serving a life time sentence.  The Prison Terminal film was nominated for a 2014 Academy Award in the category of Documentary Short Subject and it is currently being shown in the channel HBO. 

Filmmaker Edgar Barens transports us to the inside the Iowa state maximum security prison recording how the terminally prisoner Jack hall lives his final 6 months (even his last breath). As the film evolves we meet 82 year old Jack Hall who was once a decorated World War II veteran who fought in battle and was a prisoner of war. He spent 21 years in prison of which the last 12 where in the infirmary wing.  Jack Hall’s youngest son had problems with drug use and committed suicide.  Hall was serving a life sentence after being convicted for killing his late son’s drug dealer.  When we meet him he is a debilitated man who has struggled with PTSD, tobacco and alcohol problems and who is struggling with COPD. He is aware of the short time he has to live and is resigned to die in prison:
 “I’m going to get out of here one of these days… in a box” Jack Hall

Jack Hall has the fortune of being in one of the few prisons with hospice services.  They have two hospice rooms that look similar to a standard inpatient hospice unit room. The rooms have been fully decorated with donations and furniture built by prisoners.  Hall has an interdisciplinary team with a nurse, doctor, social worker, chaplain who meet and develop care plans like any outside prison hospice patient would.  Prison hospice is different in that security is an integral part of part of his team. 

There are three inmate volunteers (Herky, Glove, and Love) who are taking care of Jack Hall.  These inmates are murderers serving life sentences in prison.  They keep Hall company, they bathe him, put lotion on him and they become their friends and caregivers. Serving as hospice volunteers for these inmates is rewarding and gives them a sense of purpose:
“When you find yourself doing a life sentence, the thought of your death comes to mind. So when the prison administration started looking for guys to do volunteer work in the hospice program I said sign me up.” Glove
“When I started hospice I thought it would be about what I could give to the patient or what I could do for the patient to make them feel better. But when you do when you do what you do; the feeling you get back from then you can even describe it. I get the feeling in the inside that for once I’m somebody that nobody thought I could be” inmate hospice volunteer

Jack Hall and inmate volunteers at bedside
Like many hospice patients Jack Hall has some unfinished business. Hall says goodbye to his friends, and establishes a relationship with his older son (who turned him in for the crime), and even manages to quip a goodbye to his doctor “see you in hell”.

When Jack gets very weak he goes in to the hospice room, his symptoms are managed and the volunteers are always by his side.   He dies and he is taken out of prison in a bag.  Due to his murder conviction he is no longer deserving of military honors, a military funeral or burial in a national cemetery.

What would have happened to Jack hall if he had been in a prison without hospice?  

He probably would have died alone shackled to his bed and struggling to breathe in his cell.

There are 1,800 prisons in the U.S. and only 75 have a hospice program and 20 of those run by inmates.   In the year 2025 it is estimated that 20% of the prison population will be elderly. These inmates have committed terrible crimes for which they are paying by serving time in prison. They are dying with many chronic conditions and should be treated humanely at the end of their lives.
Prison terminal is being shown in prisons; I hope it leads to more prison hospices being established.

I suggest you read the prison terminal press kit to learn more about how the documentary was made and more details on the people shown in the movie.

you can learn more  recent news by following the social media sites for prison terminal:
If you are interested in watching a previous documentary that Edgar Barens  did over a period of two weeks in the Angola prison hospice you can watch it on Youtube:

1.HBO documentary Prison terminal the last days of private Jack Hall accessed on 4/16/2014 at
2.Press kit and press contacts for the film Prison Terminal: The Last Days of Private Jack Hall. Accessed 4/16/14 at
3. John Walters. HBO Documentary 'Prison Terminal' Shows the Human Side of Dying in Prison. Published by Newsweek 3/31/14 Accessed on 4/16/14 at
4. Bruce Reilly.  Terminal Illness in Prison.  Published by the LA Progressive on 03/27/2014 Accessed on 4/16/14 at
5. Human Rights Watch  US: Number of Aging Prisoners Soaring published 01/26/2012  accessed 4/16/14 at
Follow Dr. Jeanette Ross on twitter @rossjeanette

Wednesday, April 30, 2014 by Jeanette Ross ·

Monday, April 21, 2014

Empathy, Goals of Care & Training Opportunities to Improve Your Communication Skills and Teaching

Empathy plays an important role in all of healthcare communication, but it's especially heightened when clinicians are working with patients with serious illness and their families.  

Journal of Palliative Medicine published an article by Vital Talk's Tony Back and Bob Arnold recently about the role empathy can play in the delineation of goals of care for seriously ill patients.  Empathy without any specific action is valuable to the suffering person.  Merely being understood often times has some ameliorative impact on the suffering person and fosters a therapeutic relationship, even when some problems cannot be solved.

However, in the face of insoluble problems (e.g. cancer not responding to chemotherapy), patients understandably want helpful action, and clinicians still want to act.  Do something that will help me!  What can I do to help myself?  The question is, how do we figure out how to direct both our energy and the patient's? 

Back, Arnold, and others have written extensively on this topic, and the current article adds even more nuance to goals of care exploration.  They write about how patient emotion can be translated into meaningful action that moves patients towards achievable goals of care.  They recommend the following steps:

  1. See affect as a "spotlight"-  be curious about the reasons for the emotion.  Don't assume sadness is exclusively about dying.  The first step is merely recognizing the spotlight, even if it's not patently obvious where it's shining.  
  2. Use the affect to connect with the patient- bring it out in the open to demonstrate for the patient that you are noticing it.  They recommend doing this before moving on to figuring out what is being spotlighted.
  3. Read between the lines to infer what is important- listen for cues that suggest a deeper concern or narrative that isn't being openly talked about.  The evidence here will be incomplete, and the clinician needs to hypothesize and test the hypotheses with the patient.
  4. Develop action plan jointly with patient to address the need.  The patient needs to be committed to the plan, and when a patient is committed to action that helps them address the goal, the process is defined as a success.  

Image: FracFX "In the Spotlight"
The "goals of care" concept is already patient-centered and the described process adds to the patient centered-ness of it.  You don't automatically know what the patient's affect is about.  There's some guesswork.  But you're not going to move to an action plan until the patient confirms you've got it right AND that they are committed to the plan.  Step 4 suggests a role for patient behavior change in the goals of care process:  What can patients do to help themselves achieve important goals? In the face of serious illness, patients frequently feel like they lose control over activities in their life. Exploring emotions that might arise from this loss can help us figure out how to help patients restore some semblance of control. 

This newly described process shares elements similar to other communication skills and processes taught by Vital Talk. It's not meant to be a dogmatic process, but rather a distillation of small ingredients essential to meaningful conversations about serious illness.  

Vital Talk has some upcoming training opportunities for both clinicians wishing to improve their own communication skills and also for educators wishing to improve their teaching of communication skills. Having been through both types of training before, I would use the following descriptors: high yield, dynamic, supportive, fun, and life-long.  In addition to coming home with improved communication and teaching skills, you also come home with a process for how to continue your improvement.  

See here for more on my experience with a Vital Talk faculty development program for teaching communication. Back AL, & Arnold RM (2014). "Yes it's sad, but what should I do?" Moving from empathy to action in discussing goals of care. Journal of Palliative Medicine, 17 (2), 141-4 PMID: 24359216

Monday, April 21, 2014 by Lyle Fettig, MD ·

Wednesday, April 16, 2014

National Healthcare Decisions Day April 16th, 2014

What a great thrill it is to see something start from a small local idea and take on a full national impact. National Healthcare Decisions Day (NHDD) is today, Wednesday, April 16th, 2014 and so many more organizations are getting involved, beyond those who might naturally be inclined to assist their community with advance care planning. Many healthcare organizations, employers and communities are mobilizing today and this week to make sure that patient’s preferences wishes are being documented and recognized by the medical community. I even saw it on my health insurance employee wellness homepage!

Since the manufactured outrage over non-existent ‘death panels’ has appropriately faded, I think many people feel much more confident in addressing these issues. And interestingly it seems as if advance care planning is becoming a growth niche with so many different local, regional, and national options supporting this effort. So with all these options it is even more critical for health care providers and health advocates to be informed and involved with the people making these decisions.

If you are thinking to yourself, “Darn it, I always forget about NHDD every year and have always wanted to help and get involved,” well there are still some simple yet effective things you can do today!

1) Sign up for the monthly NHDD newsletter that comes out on the 16th of each month,
2) Gather your team and start making plans for next year,
3) Find someone in your community who is already doing something for NHDD and partner with them,
4) Follow @NHDD on Twitter, and then Tweet and Retweet about it using the hashtag #NHDD
5) Go like and share the great viral info on the NHDD Facebook page

If you are seeing any innovative efforts on NHDD today, please share them in the comments below, on Twitter, or on Facebook. Happy NHDD!

NHDD Speak Up Video from NHDD on Vimeo.

Wednesday, April 16, 2014 by Christian Sinclair ·

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