Monday, August 18, 2014
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
(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.)
Photo Credit: Emily Riegel
Friday, August 15, 2014 by Lizzy Miles ·
Tuesday, August 12, 2014
“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]
“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.”
“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)
"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
Ready to check out the film for yourself? Make sure you have facial tissues handy.
Tuesday, August 12, 2014 by Jeanette Ross ·
Wednesday, July 23, 2014
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 Follow @oliverdr
Facebook Event Listing: https://www.facebook.com/events/1443430942595064/
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: https://www.youtube.com/watch?v=K9cSX5XPY70 #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 nurph.com, for ease of following.
Chat Transcript and Chat Analytics courtesy of @Symplur
Wednesday, July 23, 2014 by Christian Sinclair ·
Wednesday, July 16, 2014
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.
Signing up for Twitter and seeing how this goes.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.
— Christian Sinclair (@ctsinclair) November 6, 2008
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 nurph.com 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
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.
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
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.
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
“I’m going to get out of here one of these days… in a box” Jack Hall
“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|
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:
Wednesday, April 30, 2014 by Jeanette Ross ·
Monday, April 21, 2014
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.
- 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.
- 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.
- 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.
- 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"|
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
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
Today is #NHDD! http://t.co/tv5oz68XjK Please take a moment to learn about the importance of advance care planning. pic.twitter.com/OgryrbdD935) Go like and share the great viral info on the NHDD Facebook page
— NHDD (@NHDD) April 16, 2014
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 ·