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:




References:
1.HBO documentary Prison terminal the last days of private Jack Hall accessed on 4/16/2014 at http://www.hbo.com/documentaries/prison-terminal-the-last-days-of-private-jack-hall#/
2.Press kit and press contacts for the film Prison Terminal: The Last Days of Private Jack Hall. Accessed 4/16/14 at www.prisonterminal.com/prison-terminal-press-kit.html
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 http://www.newsweek.com/hbo-documentary-prison-terminal-shows-human-side-dying-prison-238972
4. Bruce Reilly.  Terminal Illness in Prison.  Published by the LA Progressive on 03/27/2014 Accessed on 4/16/14 at http://www.laprogressive.com/terminal-illness-in-prison/
5. Human Rights Watch  US: Number of Aging Prisoners Soaring published 01/26/2012  accessed 4/16/14 at http://www.hrw.org/news/2012/01/26/us-number-aging-prisoners-soaring
6. S. 923 AND H.R. 2040, TO DENY BURIAL IN A FEDERALLY FUNDED CEMETERY AND OTHER BENEFITS TO VETERANS CONVICTED OF CERTAIN CAPITAL CRIMES accessed on 4/16/2014 at http://commdocs.house.gov/committees/vets/hvr070997.000/hvr070997_0.htm
 
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.  


ResearchBlogging.org 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 ·

Thursday, April 10, 2014

Cases: "Am I really going to have to live like this?": The Role of Octreotide in Patients with Persistent Nausea and Vomiting after Venting Gastrostomy

Case: 

Ms BB is a 57 year old woman with fallopian tube cancer with multiple mesenteric and peritoneal metastases and a history of large and small bowel obstructions. She presented with nausea, vomiting, and abdominal distention. She was found to have another bowel obstruction and had an NG tube placed with improvement in her symptoms. She then went to the OR for an exploratory laparotomy. She was found to have massive carcinomatosis and ascites and it was felt that a debulking was not possible so a venting gastrostomy tube (g-tube) was placed and the operation was aborted.

Palliative care was consulted to assist with postoperative nausea and vomiting. Despite placement of the venting gtube, the patient had persistent nausea and held a basin next to her during the interview to catch her frequent episodes of emesis. She was despondent because the surgeons had told her that the g-tube was working well and draining large amounts of fluid but that it was unable to keep up. Antiemetics were not helpful. The patient thought that there was nothing left to do and that she would have to live the rest of her life with this level of discomfort. A trial of octreotide 0.1mg subcutaneously three times daily was initiated in addition to continued drainage by her venting gtube. She was also given around-the-clock intravenous haloperidol and PRN intravenous ondansetron. By the next day, her g-tube output had decreased and her nausea and vomiting had resolved. Her pain was controlled with a hydromorphone PCA. She was eventually able to be discharged home with plans to follow up with her outpatient oncologist to consider next steps. With her symptoms controlled, she was able to move past her initial distress and talk openly about her hopes for the future and how she wanted to spend the time she had left.



Discussion:

Malignant bowel obstruction can occur with any cancer but is most commonly associated with advanced ovarian cancer, where it occurs in up to 50% of patients. It generally indicates a poor prognosis and carries a heavy symptom burden predominated by nausea, vomiting and abdominal pain. Patients with carcinomatosis, like Ms BB, are generally not candidates for surgical correction of the obstruction or endoscopic stenting. Fortunately, medical management can be very effective. Abdominal pain is treated with opioids and nausea is treated with metoclopramide in partial obstructions and haloperidol in complete obstructions. Corticosteroids are also often used for help in symptom control and because there is some indication that they may promote resolution of the obstruction presumably by decreasing inflammation and promoting salt and water absorption. Gastrointestinal secretions can be controlled with anticholinergics (such as scopolamine) and/or somatostatin analogues (such as octreotide).

Two prospective, randomized controlled trials suggest octreotide is superior to scopolamine. Octreotide works by inhibiting the release of several gastrointestinal hormones thereby reducing secretions, slowing motility, increasing water and electrolyte absorption, and reducing bile and splanchnic blood flow. It is generally dosed 0.1-0.3mg subcutaneously TID. Some palliative care units will use continuous infusions at higher doses with anecdotal success.

Current guidelines suggest placing a venting g-tube if medical management is unsuccessful. A venting g-tube is similar to a traditional g-tube but is used solely for drainage of the gastrointestinal secretions and the liquids taken by mouth that are unable to bypass the obstruction. This drainage prevents the backup of these fluids that would normally stretch the viscus and stimulate vomiting. As experience with this intervention increases, many clinicians advocate g-tube placement early in the treatment algorithm because it can provide more complete relief of vomiting and allow more extensive pleasure feeding. Venting g-tubes can, however, place the patient at greater risk for electrolyte imbalances.

Most guidelines and many clinicians consider venting g-tube placement and medical management with octreotide/ anticholinergics as two separate treatment pathways. This case highlights the fact that, occasionally, both may be needed simultaneously. Although Ms BB’s venting g-tube was draining effectively, she still experienced severe nausea and vomiting, and it was not until octreotide was added to the regimen that her symptoms became controlled. This scenario is borne out in some of the data regarding venting g-tubes.

In one series of patients with gynecological malignancy and upper intestinal obstruction, 4 in 31 had incomplete resolution of their symptoms with placement of a venting g-tube alone. All 4 had complete symptom relief when octreotide was added to the regimen. Clinicians need to be aware that venting gastrostomy tubes and medical management with octreotide/anticholinergics are not mutually exclusive treatment algorithms and a small percentage of patients will require both for adequate symptom control. Fortunately, as was the case with Ms BB, this approach can allow almost all patients with malignant bowel obstruction to regain some measure of comfort.

References:

1. Ripamonti CI, Easson AM, Gerdes H. Management of malignant bowel obstruction. Eur J Cancer (2008). doi:10.1016/j.ejca.2008.02.028

2. Campagnutta E et al. Palliative treatment of upper intestinal obstruction by gynecological malignancy: the usefulness of percutaneous endoscopic gastrostomy. Gynecologic Oncology. 1996;62:103-105. doi:10.1006/gyno.1996.0197

3. Ripamonti CI et al. Clinical-practice recommendations for the management of bowel obstruction in patients with endstage cancer. Support Care Cancer. 2001; 9:223-233. doi:10.1007/s005200000198


Original Case by Gordon J Wood, 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 health care.

Thursday, April 10, 2014 by Christian Sinclair ·

Tuesday, April 1, 2014

Innovative Palliative Fellowship Using Snapchat for Family Meetings


(We hope you enjoyed our April Fool's jokes this year. Look for more of our past April Fool's posts here. - Ed.)

April 1, 2014 by Abe R Feaulx, Special Reporter 

Dr. Arya Kiddenme, a palliative care fellow at University of State College Medical School is preparing for a potentially very tense family meeting. The patient is unresponsive in the ICU and the family is having a difficult time coping with a sudden decline in their condition. When it is time to get ready to enter the room, Dr. Kiddenme quickly remembers to grab her iPhone 5s. “Can’t forget the most important tool!” She sits down to begin the family meeting, opens up the Snapchat app, and sends off a short introductory video clip. In a few seconds the family responds, with their first question, “Will dad make it out of the ICU?”

Dr. Hurley Hadopter is the program director at USCMS and believes strongly in capitalizing on the words and tools families use to communicate. “We were seeing more and more families not participating in family meetings and only paying attention to their smartphones. It was clear we had to reach them where they were, so we took a survey and found that many families would be very comfortable with using Snapchat, Twitter, Facebook, LinkedIN, Vine, iMessage, FaceTime and others, although no one choose Google Plus. We settled on using Snapchat because my teenage son said it really was useful to talk to girls, his bros and stuff like that.”

In the first month using Snapchat for family meetings, the palliative care team has already been seeing some impressive results. New consults have dropped off considerably. When asked for comment on why they no longer consulted the palliative care team, the chief oncologist at USCMS state, “I know palliative care clinicians really pride themselves on being great communicators but this is taking the whole ‘communication and listening stuff’ a little too far.”

Tuesday, April 1, 2014 by Abe R Feaulx ·

Pediatric Hospice is First in the Country with Emoji-Based Pain Map

(We hope you enjoyed our April Fool's jokes this year. Look for more of our past April Fool's posts here. - Ed.)

April 1, 2014 by Abe R Feaulx, Special Reporter


Pediatric Hospice of the Silicon Valley watches emerging trends in technology very closely. Seeing patients who had already staked a preference for Apple products, they wanted to make sure they could understand and relate to them differently then they would to children who grew up on Android based platforms, and the small minority that have Windows, Blackberry or Palm Pilot smartphone experience.  

Social Worker Jo King emphasized, "We noticed that the iOS children in our program would communicate using almost exclusively using Emoji. And we thought, how can we better understand what they are feeling, fearing, and thinking about.  They don't type words, even though they may be 11 or 12.  They just kept going back to these icons."  The team is eventually hoping to publish research about this strange new way of communicating.  Also understanding that a scale was too constricting, the pediatric team took a Ouija board approach and just placed Emoji all over a page and let the children pick without subjecting them to a constricting scale from 0-10.

When asked for clarification on how this was different than just giving the child an iPad, Ms. King replied, "Yeah, basically we just let them play on an iPad."

by Abe R Feaulx ·

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