Monday, September 29, 2014

The Conundrum of Energy and Fatigue

A good rule of thumb for end of life issues should be ‘forget what you think you know about normal.’ This is where much of the confusion and misguided expectations comes from in hospice. People try to overlay what they understand about a healthy or diseased body onto a person whose body is shutting down. The problem is they are not the same. Somewhere along the line, a healthy body becomes diseased, and then, usually unrecognized by most, a transition from chronic disease shifts to actual dying. This transition begins weeks and months ahead of an actual death, and yet everyone surrounding the patient, including the medical team, tends to treat the patient with the faulty assumption that the ‘normal’ rules are at play.

I see this especially in regards to the idea of energy and fatigue. In the normal/chronic disease model, we know that exercise is good. In fact, you have probably been told that to combat fatigue, you should exercise. Expending energy actually leads to a boost in energy. We even have phrases tucked away in our subconscious such as “use it, or lose it”, “no pain, no gain”, and “stay strong, live long”. This becomes ingrained; to get better, or live longer, we must simply get up and move. If you were to put this into a math equation, it would be spend two units of energy and get four units back.

It is no wonder then, with this idea of normal in our minds, why we get frustrated when we attempt to apply this formula at the end of life and it fails.

Both patients and families seem confounded when people aren’t getting stronger, despite forcing themselves to get up and move. They are using it, but still losing it. They experience pain, as families push them to stay active, and yet there is no gain. That is because at the end of life, there are new rules at play.

The energy formula when the body has started to shut down is, spend two units of energy and get zero units back. There is no boost at the end of life when you get up and move, instead people find themselves worn out, and exponentially more tired. A trip to the store equals an afternoon of sleeping. An outing to a family function means the next two days will be in bed. Eventually, even eating a meal will require a 3-hour nap to recuperate.

Unlike what we think of as ‘normal’, to eat more protein, or add more calories, has little effect on the formula. It is important to realize that nothing will increase that day’s allotment of energy. With no ability to increase energy, the day becomes a negotiation of the most important way to spend those units. It may be in conversations, or eating, or completing tasks, or outings; the key should be allowing the patient to decide and not imposing our own ideas of importance on them.

Although the body behaves differently at the end of life, recognizing what the new normal is, will lead to less disappointment and frustration, and ultimately to better quality of life.

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: alfromelkhorn via Compfight cc

Monday, September 29, 2014 by Amy Clarkson ·

Sunday, September 28, 2014

Pallimed Opportunities

We’re always looking for inspired volunteers to help spread good palliative care and hospice information. If you see something below you might be interested in please email christian@pallimed.org

Thanks!

Christian Sinclair

Content Production
Writers - See this Pallimed post for much more detail. Looking for various types of writing subjects (opinion, event coverage, research/journal club, media coverage and other). Editorial assistance provided.  No HTML/coding/blogging experience necessary. No previous publications necessary. Some writing experience preferred. Particularly looking for voices from social work, chaplaincy, nursing, aides, PA, NP, fellows administration, pharmacy, and volunteering.  Open to anyone working in the hospice and palliative care space. Commitment: writing 2 posts per quarter (2-5 hours per post).

Assistant Editors - particularly looking for someone with more writing and editorial experience but open to anyone with a strong passion to contribute to the wider knowledge of the field. Current areas open to editors include Arts & Humanities, Case Conferences, Social Media and Main/Research.  Other potential areas to be developed in the future. Open to anyone working in the hospice and palliative care space. Great opportunity for a HPM fellow looking for a scholarly project. Commitment: writing 1-2 posts per quarter (2-5 hours per post), and editorial duties (supporting writers, maintaining editorial calendars, etc. - 30min-2 hours per week)

Support Team
Curators - Supporters to the Assistant Editors and Editor, mainly for those people not interested in writing or public exposure for professional or other reasons. Projects include maintaining archives, checking links, social media discovery and re-publishing (i.e for Facebook, Pinterest, Twitter, YouTube, Kickstarter).  If you spend time on any key social media platforms and keep finding great hospice and palliative care (or even general health care material), this is for you. Social media experience preferred, but willing to train. Anyone with Pinterest or YouTube experience highly preferred. Commitment: 30min-2 hours per week.

Designers/Photographers - We are always looking for creative people who are able to put together something that visually communicates important issues.  If you have a design or photography background or know someone who does, please consider supporting great palliative care info with your talents. Lots of room for growth and creativity here. Commitment: Designers 1-2 hours per month, Photographers as needed

Special Projects
Conference Coverage - Going to an upcoming conference that is related to hospice and palliative care topics? There are many ways in which you can make your learning experience have a much broader impact.  We love to have you write up your experience for Pallimed, host a Pallimed gathering, and/or tweet from the conference.  Some small amount of funds may be available for events and hopefully in the future conference reimbursement. Commitment: 2-14 hours around the time of the conference, depending on the potential project involved, and length of the conference. If you are going to a key conference with hospice and palliative care topics, please let us know ahead of time if you would like to collaborate with us to spread the knowledge!

We are currently looking for 1-3 people for these big upcoming conferences:
  • World Congress on Pain 10/7-10/11
  • American Society for Bioethics and Humanities 10/16-10/19
  • Society for Medical Decision Making 10/18-10/22
  • ASCO Palliative Care Oncology Symposium 10/24-10/25 PRIORITY!
  • NHPCO Clinical Team Conference 10/25-10/29 PRIORITY!
  • Hospice NZ Palliative Care Conference 10/29-10/31
  • 2nd Congress on Paediatric Palliative Care 11/19-11/21

Top secret stuff - Have a really cool idea but need a bigger platform to stage it on?  Or want to hear about some of the future ideas for growth within Pallimed? Drop us a line and maybe we can partner up on the next big idea! 

Sunday, September 28, 2014 by Christian Sinclair ·

Saturday, September 27, 2014

10 Observations From a 49 Year-Old at Risk For Falls

It finally happened. After years of sitting at John’s bedside through multiple serious bike crashes, I had one of my own. I’ve had plenty of time to build up a ridiculous amount of smugness about why he crashes and I don’t. “John is reckless; Staci is cautious. John rides like an airplane engine on a shopping cart; Staci uses her head.”

I was mountain biking in Cherokee Park. A storm front was moving in so the temperature and humidity were dropping and it was breezy. I felt so good! Like Rose and Jack on the bow of the Titanic. I was queen of my body and that trail. I passed a real mountain bike racer and I said to myself, “Yeah, I’m a racer too.” Twenty seconds later, my front wheel hit a stick in the trail. My wheel went left and my body went right. My right hip hit the trail and a bolt of lightning lit up my hip socket. I pulled myself to the trail side and checked around. Nothing else hit, no skin lost, no head trauma, nothing. I stood up. Left leg works…right leg does not. Time to go to the hospital.

Now for the observations:

1. Thank goodness for the kindness of strangers. A woman and man found me trying to stand up unsuccessfully. They and a lone mountain biker helped me up a 100-yard grassy slope to the road. The real mountain bike racer came back and wanted to fetch his car and take me to the ED. I waved him on. No sense screwing up two perfectly good rides.

2. It can be fun when you don’t look like the typical person with your diagnosis. After the lightening bolt of pain subsided, my hip really didn’t hurt that badly. I could even move it around some, especially if I was in charge of the moving. The ED doctor wanted to do an x-ray but I don’t think he expected to find anything. It was amusing to watch John and three ED docs look at the x-ray in another room and then look through the window at me with surprise. I already had my answer when the radiology tech said I needed a chest x-ray. All the ED staff were kind to me before and after they knew I had a broken hip.

3. Anyone who touches pee, poop, vomit, sputum or blood without making an eww face is an angel to be thanked at every opportunity. During my first hospital day, I could only lift up on a bedpan to pee. The CNAs, RNs and John assisted with me kindness. I teach medical students, medicine residents and palliative medicine fellows that they must be present with any misdeed the human body, mind or soul can manifest and not make an eww face.

4. Pick good people to care for you and then trust them to do so. John’s orthopedic surgeon is in his list of favorite contacts. She is smart, talented, experienced, compassionate, and a “master of the obvious.” She answered John’s call from the ED, looked at the x-rays and recommended a surgeon who was trained in doing a total hip replacement from the front rather than the back. This meant no cutting through my butt muscles and a faster recovery time.

5. I wanted a surgeon who was smart and a good human being. I was pleased to hear multiple physicians affirm that I had picked the right surgeon for my problem. But the deal was sealed when two former OR nurses who had worked with him said he treats everyone with respect, equality and kindness.

6. Healthcare workers freak out when you talk about end of life care preferences. I told one of my nurses if I had a catastrophic complication related to my hip fracture or surgery that necessitated total care or permanent artificial nutrition/hydration, my goals of medical care would change to comfort only. I would want to be allowed to die naturally. Her body shivered and she said I shouldn’t talk about such things. Hip fractures are not benign. If you are an older woman, you have almost a 1 in 10 chance of dying in the first month. Talking about death in this situation is practical. I was able to use a wheelchair independently on my second hospital day so I visited with the RN in charge of palliative services a few floors below my room. I told her my predicament. She knows I have a completed living will declining life prolonging care in certain scenarios. John is my healthcare surrogate. She said she would be available to support John in carrying out my EOL care preferences if the need arose.

7. Sweet words matter. I care for actively dying people. When I am at their bedside, I tell them things that I would want to hear in the hours and days before death. “I am here… You are safe… You are surrounded by people who love, care for and honor you… I will be here as long as you need me.” I don’t know if these words help; dying people can’t tell me. My anesthesiologist said similar things to me when he was putting me to sleep. I will keep saying my words.

8. Take your pain meds after surgery. I thought I was superhuman since my broken hip seemed nearly painless. I refused the RN’s offer of medication. I treat pain crises often. Until I had my own, I did not comprehend how trapped inside your miserable body you feel. I did not escape until hours later when the opioids kicked in. (Editor’s note: Please note that she did not call them narcotics.)

9. Take your laxatives. Pooping is imperative.

10. Have good family, friends and coworkers. All the calls, texts, visits, and care packages were so appreciated. Catherine is my right leg woman at home. Will is my sane perspective. Charlotte is my joy. And John. He sat by my side, coordinated my care, helped me pass the time and worried about me when I was gone from him. Thank you and I love you endlessly. 



Disclosures: The only thing I promote is good palliative care for people who seek my advice. I did have free and easy access to many physician colleagues for their expert opinions. As the perks of being a physician dwindle, I will happily claim this one.

Staci Mandrola is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes at Dr John M, where this post was originally published. Reprinted with permission. Copyright © 2014 John Mandrola

Saturday, September 27, 2014 by Pallimed Editor ·

Tuesday, September 23, 2014

When Social Media Streams Go Silent

Increasingly people are chronicling their experiences with life-limiting illness online. They help us understand a phase of life that many find hard to face, making a tough subject slightly less taboo. If fact only last week, Charlotte Kitley, a blogger with Huffington Post UK, posted a blog posthumously And So There Must Come an End. There are other examples, like Doug Gosling and his amazing writings in his blog Dying Digitally or Kate Granger (@GrangerKate), a palliative care doctor & terminally ill cancer patient musing about life and death.

Often through sharing online, people build communities and we get updates from people who are connected to them in person. But sometimes. there’s just silence. In our next Tweetchat we'll bring together the Twitter communities of #hpm (hospice and palliative medicine/care) and #hcsmca (health care social media Canada) to discuss some of the issues that emerge from the generous contributions of these authors.

Some of the questions to be covered may include: What happens when their social media channels go silent? Are they truly gone? Are they just too ill to write? Do the people close to them take over the communication? How does a writer's openness about their illness and mortality differ from classic illness support/update blogs? What obligations are unexpectedly thrust upon them because of a growing audience? What blogs/vlogs from people with a serious illness have influenced and/or inspired you?

Join us with our host Dr. Naheed Dosani (@NaheedD), Wednesday night (September 24th) at 9p ET. We'll be using the hashtags #hpm and #hcsmca and meeting new friends as we bring these two communities together.

-Colleen Young, Christian Sinclair and Naheed Dosani

What: #hpm/#hcsmca joint chat on Twitter
When: Wed 9/24/2014 - 6p PT / 9p ET
Host: Dr. Naheed Dosani

Facebook Event Listing: https://www.facebook.com/events/262061087251474

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.

We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur
Cross-posted to #hcsmca blog

Tuesday, September 23, 2014 by Christian Sinclair ·

Monday, September 22, 2014

Refreshing The Definitive List of Hospice and Palliative Blogs

Just in case you thought Pallimed and GeriPal were the only two hospice and palliative medicine blogs out there, I wanted to let you know I have finally gone back and refreshed our ongoing *UPDATED Hospice and Palliative Medicine Blog List*. It had been over a year since I updated it, and I sadly realized a lot of blogs went dormant in that time (19!), but I also found 13 blogs previously not recorded!

So why does this matter? Many have said that blogs are dead, taken over by the fast paced world of Twitter, the ever disappearing Snapchat, and the infinity time-suck of Facebook. Jason Kottke summed it up nicely:

Sometime in the past few years, the blog died. In 2014, people will finally notice. Sure, blogs still exist, many of them are excellent, and they will go on existing and being excellent for many years to come. But the function of the blog, the nebulous informational task we all agreed the blog was fulfilling for the past decade, is increasingly being handled by a growing number of disparate media forms that are blog-like but also decidedly not blogs. Instead of blogging, people are posting to Tumblr, tweeting, pinning things to their board, posting to Reddit, Snapchatting, updating Facebook statuses, Instagramming, and publishing on Medium. In 1997, wired teens created online diaries, and in 2004 the blog was king. Today, teens are about as likely to start a blog (over Instagramming or Snapchatting) as they are to buy a music CD. Blogs are for 40-somethings with kids.
Ha, while I do have kids, I'm not a 40-something (yet), and I think people in health care and especially in hospice and palliative medicine still have a lot to say.  And a tweet, picture or Facebook post just doesn't capture it.  We have to write more AND read more to get at real change. In the past we had things like Palliative Care Grand Rounds to feature great blog writing every month. But that round-up of powerful prose dropped off, because it takes time to sustain those things and everyone always seems to be running out of time. Twitter, Facebook, and even LinkedIN are all so ephemeral. Yet blogs have a sense of permanence and search-ability, those other social networks really do not have.

Except not all blogs are permanent. My favorite blog of years past was Hospice Blog by Hospice Guy. He was an anonymous hospice doctor in Oklahoma and he wrote honestly and passionately about his work. But he stopped writing, and the blog eventually disappeared*. Either taken down intentionally or just lost to the maintenance of the internet. I don't want that to happen to other HPM writers.

So I will make a promise to you as editor of Pallimed to highlight great writing when we see it.  It may come in a summary of links, a feature piece about a single blog, or even reposted content (with permission). And when you read it, you can share it, tweet it, or most valuable of all - leave a comment.

And I hope you will make a commitment to all of us, your peers. If you are an aspiring creative type...wait, scratch that...some of you may underestimate your aspirations and creativity.  If you have something you want to say about hospice and palliative medicine, drop me a line. Let me know what your skill set and ambitions are and I will help you find other like-minded people or projects that are achievable and then we will really begin to have an impact.

*I've downloaded as much as I could find from the Internet Archive of The Hospice Blog by Hospice Guy. If anyone knows who he might be, tell him to drop me a line, I would love to preserve his writings.

Monday, September 22, 2014 by Christian Sinclair ·

Wednesday, September 17, 2014

New IOM Report: Dying in America - Improving Quality and Honoring Individual Preferences Near the End of Life

Today, the Institute of Medicine released a new report called "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life." I had the pleasure of serving on the committee for the past 18 months*, which makes me so excited to finally share this report publicly. I hope you will all join the wider health care community in dissecting, analyzing, and disseminating this report.  Without your involvement from this point forward, this will merely be an impotent academic exercise.

Nothing in this report should be shockingly new to anyone in hospice and palliative care (HPC), but you now have this a tool to construct an exciting future where more people get excellent whole person care. All the organizations we work with (especially those outside of HPC and outside of health care) need to understand the recommendations and work to try an implement them locally and systematically. We are a large voice, but we are barely speaking as one.  NHPCO via Hospice Action Network and AAHPM have some great resources on how to work with your local and federal legislators. Let them know you read this and it is important to you!  Share what you find important about this report with your friends and family.

The key areas covered include:

  • Delivery of person-centered, family-oriented care
  • Clinician-patient communication and advance care planning
  • Professional education and development
  • Policies and payment systems
  • Public education and engagement
Two of the most interesting issues to me in this report, are 1) the call to payers and policy makers to integrate medical and social services and the 2) the emphasis on teaching primary palliative skills to all disciplines and specialties.  We can't get to major change with out reforming how the money flows through the system and incentives action over communication, and we as specialists can't satisfy all the palliative care needs in the system, so we need to ensure a basic palliative skill set for all health care providers.

The last major reports were in 1998 (Approaching Death: Improving Care at the End of Life) and 2002 (When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families) and they helped spur a great growth in palliative care as a specialty for physicians.  We have a tent pole now it is time to raise the roof.

Major articles featuring the IOM report (will be updated- check back):
New York Times - End-of-life Care needs Sweeping Overhaul, Panel Says
Kaiser Health News - Dying in America is Harder Than It Has To be, IOM Advises
Science 2.0 - US Health System Doesn't Think About End of Life Care - Yet
Business Insider - US Needs Better End-of-Life Care, Which Might Cut Costs: Study
Washington Post (blog) - It's Time to bury the 'death panel' myth for good. Is this the way to do it?
the kb Group (blog) - The New IOM Report on Dying in America
Geripal (blog) - New IOM Report on Dying in America
Forbes (blog) - Reimagining End of Life Care

*In case you have not been a long time reader, you may not know that I highlighted some potential gaps in the IOM committee when it was first announced in January 2013. While it was not meant as a means to get on the IOM committee (I applied the normal way and was initially not selected), some people put in my name to the IOM, and they added me as a member in February 2013.  It was really a fantastic experience and I learned so much from the many smart people on the committee. I would have loved to write about it while I went through it and share it with all of you, but the IOM review process stresses impartiality and confidentiality as you build the report. But now the report is out in the wild and I hope you will join me in spreading this important information.

Wednesday, September 17, 2014 by Christian Sinclair ·

Tuesday, September 16, 2014

The Role of Neurosurgical Interventions in Palliative Care

(In preparation for the 9/17/14 #hpm Tweetchat, guest host Dr. William Rosenberg summarizes a few of the neurosurgical interventions which may be useful in palliative care. - Ed.)

There are three major ways that neurosurgery can alleviate pain:

1. Targeted Drug Delivery in which medication is delivered directly to the brain or spinal cord by way of a very small catheter placed in the spinal fluid. The catheter could be connected to a pump placed under the skin for longer term use. Alternatively, a procedure not much bigger than a spinal tap can be used to place the catheter and bring it out through the skin to an external pump. When patients require doses of opioids and other medications which give them unacceptable side-effects, like clouding of consciousness, lethargy, loss of appetite, severe constipation, targeted drug delivery can often allow caregivers to reduce or even eliminate such medications, resulting in an improved quality of life and often better pain control.

2. Neurostimulation is the use of electrical stimulation, through small electrodes placed via needle or small incision, to reduce pain. It is especially effective with neuropathic pain (the pain caused by an injured or damaged nerve that sends erroneous signals to the brain causing the perception of burning, itching ,swelling or other kinds of pain). One can stimulate a peripheral nerve, the spinal cord or even the brain (“deep brain stimulation”) to achieve pain control, depending on the circumstances.

Often neurostimulation is not considered in the context of palliative care. But, in such a setting, neuropathic pain can be difficult to address. It is possible to place a neurostimulation lead under the skin and bring it out to an external control (pulse generator). In this way, hard-to-control pain (e.g., after radiation, chemotherapy or the surgical injury of a nerve) can often be addressed without the additional incision and expense of an implanted pulse generator (as is used in non-palliative care settings).

3. Neuroablation is the interruption of certain pain pathways in the brain or spinal cord to achieve pain control. These can be very effective and often will allow the patient to drastically decrease or even eliminate the pain medication s/he is taking. There are a number of such procedures available, depending on the details of the pain. Percutaneous cordotomy, myelotomy and nucleotractotomy are outpatient, CT-guided procedures, done under local anesthesia through a needle, that interrupt the pain pathways for different locations.

Cingulotomy is a procedure done under brief general anesthesia in which a computer is used to target two areas of the brain to interrupt pathways related to suffering. It can be very effective in treating the “suffering” component of pain. Recently, it was found to be effective in treating the air hunger associated with a lung tumor in a case report (see reference here).

Radiosurgical hypophesectomy is a non-invasive, single visit, outpatient procedure targeting the pituitary gland (hypophysis). It is based on decades of experience with surgically removing the pituitary gland for diffuse pain from bone metastases (cancer that has traveled to the bone). No one knows how it works, but it can be very effective. And, since it is completely non-invasive, the risks are very low. Even pituitary function is usually preserved and, if it is affected, hormones can easily be replaced.

References and Resources

ResearchBlogging.org
Smith TJ, Staats PS, Deer T, Stearns LJ, Rauck RL, Boortz-Marx RL, Buchser E, Català E, Bryce DA, Coyne PJ, Pool GE; Implantable Drug Delivery Systems Study Group (2002). Randomized clinical trial of an implantable drug delivery system compared with comprehensive medical management for refractory cancer pain: impact on pain, drug-related toxicity, and survival. Journal of Clinical Oncology  20 (19), 4040-9 PMID: 12351602 (OPEN ACCESS PDF)

Stearns L, Boortz-Marx R, Du Pen S, Friehs G, Gordon M, Halyard M, Herbst L, Kiser J (2005). Intrathecal drug delivery for the management of cancer pain: a multidisciplinary consensus of best clinical practices. The Journal of Supportive Oncology, 3 (6), 399-408 PMID: 16350425

Raslan AM, Cetas JS, McCartney S, Burchiel KJ (2011). Destructive procedures for control of cancer pain: the case for cordotomy. Journal of Neurosurgery, 114 (1), 155-70 PMID: 20690810

Hayashi M, Taira T, Chernov M, Fukuoka S, Liscak R, Yu CP, Ho RT, Regis J, Katayama Y, Kawakami Y, Hori T (2002). Gamma knife surgery for cancer pain-pituitary gland-stalk ablation: a multicenter prospective protocol since 2002. Journal of Neurosurgery, 97 (5 Suppl), 433-7 PMID: 12507070

What: #hpm chat on Twitter
When: Wed 9/17/2014 - 9p ET/ 6p PT
Host: Dr. William Rosenberg 
Facebook Event Listing: https://www.facebook.com/events/1443430942595064/
Topics:

T1 What has been your experience, if at all, with neurosurgical procedures for palliative care?
T2 Where do you see such procedures fitting into the overall palliative care of patients?
T3 What aspects of these procedures could be modified or changed to make them more beneficial to suffering patients?

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.

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

(An earlier version of this post appeared first on Dr. Rosenberg's website Center for the Relief of Pain. - Ed.)

(Edit - 9/17/2014 - added links to transcript and analytics - Ed.)

Tuesday, September 16, 2014 by Christian Sinclair ·

To cure almost always, to relieve often, to comfort if we have the time?
A Challenge to Palliative Care

(Please welcome Cory Ingram, MD, MS, FAAHPM to Pallimed.  Dr. Ingram recently attended the 2014 Palliative Care Congress in Montreal at McGill University, "the birthplace of palliative care." He posted many pearls from the meeting to Twitter, and I asked if he would be so kind to summarize his trip to this great conference. Please enjoy! - Ed.)

When Balfour Mount, father of Palliative Medicine in North America, coined the term Palliative Care more than 40 years ago it may have been difficult to envision 1600 people from more than 60 countries making their pilgrimage to Montreal for the biannual celebration of the specialty at the 20th International Congress on Palliative Care. In speaking with colleagues from around the globe the theme that brings them back is consistent. This conference is for the heart.

The congress content is suited for the interdisciplinary nature of the specialities and attendees from around the world. It kicked off with several day long pre-conference workshops. Dr. Tom Hutchinson, editor of the text Whole Person Care*, created a brilliantly constructed day to deeply examine whole person care for persons with cognitive impairment. The day offered a medical review of cognitive impairment followed by a personal account of caring for a loved one with dementia. The question of the personhood and maintenance of personhood while living with dementia was explored prior to an insight into the repercussions for families caring for a loved one with dementia. Preceding a panel discussion, the role of the community was highlighted. It is interesting to think of how we speak about institutionalized persons with dementia as no longer living in the community.

In McGill tradition, the plenary sessions were opened with moving reflections. One reflection set to beautiful music titled “Fragile” from France, which played while photographic images streamed portraying the fragility of life. Plenary sessions with speakers from around the world identified challenges for us to consider for ourselves and those we care for in palliative care. What are the roles of forgiving and forgetting? How do we foster a balance between holding on and letting go? How do you let go if you have nothing to hold on to? How do we balance being proactive and letting things happen naturally? How do we access the spiritual dimensions that are not readily accessible? How do we transfer a fight to control to a search for the meaning of suffering? Is the heart of medicine ultra performance? Where is the art? Where is the lived experience?

In conclusion, the paradigm of the future of medicine is one where palliative care is central to the core of care for all persons. To this end, the Montreal Declaration was created as a formal request for inclusion of palliative care in the United Nations 15 year health targets. You can add your voice to the growing support for the Montreal Declaration by signing on.

Take home messages:

1. Provide whole person palliative care.
2. Understand that palliative care is at a cross road of the humanities and sciences.
3. Avoid limiting our scope to symptomotologists.
4. Maintain “radical presence” to the humanity of another.
5. The art of palliative care is to find the core of each and every person.
6. Dr. Chochinov and Canadian Virtual Hospice launch a new film on Dignity Conserving Care.
7. The elephant in the room is Euthanasia this year in Canada.
8. Euthanasia is not about end of life care….rather it is about life ending procedures.
9. Euthanasia has no place in palliative care.
10. Stay true to the founding principles of palliative care with attention to total pain of the whole person and their family.

Cory Ingram, MD, MS, FAAHPM is a Senior Associate Consultant in Palliative Medicine, Senior Associate Consultant Palliative Medicine, Assistant Professor of Palliative and Family Medicine, Director of Palliative Medicine Mayo Clinic Health System, Director of Palliative Medicine Office of Population Health Management all at the Mayo Clinic in Rochester, MN. The views expressed in this article are my own and do not reflect the views of my employer.

*Link is an Amazon Affiliate link with proceeds going to Pallimed

by Cory Ingram ·

Friday, September 12, 2014

Draw the Lines: The Art of Setting Boundaries

One cannot work in end of life care without being challenged by boundary issues. Hospice and palliative care professionals are present during the most intimate time of a person’s life – their death. I certainly am not an expert on boundaries, but I do think about them often. Consider this article a set of contemplations regarding boundary challenges we face.

Challenge: The Appearance of Compassion versus Professional Neutrality

My first internship was at a mental health counseling center. My training emphasized having a neutral facial expression at all times. The purpose, I suppose, is so the client feels comfortable with being open with the counselor. If the client revealed an unpopular thought, the counselor would not want to have a reaction that would lead the client to feel self-conscious about their disclosure. It makes sense, in theory, but there are times when facial expressions are not only warranted, but helpful.

I was leading a bereavement group and a client told a story about feeling responsible for a relative’s death in a car accident. She told her story in great detail and by the end, most of the other attendees were crying. I managed to hold back my tears, but my eyes did water. After the group, the woman who told the story came up to me and thanked me. She said she had attended individual counseling and felt like the counselor didn’t even care. She said she could tell by my face that I cared.

A couple of years later, I went to a training by Bob Neimeyer, a well-renowned expert on complicated grief. He shared a video of a counseling session and he cried with the client who had experienced a tragic death. I felt validated; if he could share emotion, then it must be okay.

Where to draw the line: The key to compassionate expression, I believe, is to not grieve more than the client. If your reaction is so strong, the client ends up comforting you, then you may need to examine your own triggers.

Challenge: Intimacy versus Professional Distance

When we come into a patient’s life during a hospice admission, we are there during the most vulnerable time. We begin as strangers and we have to build rapport through openness and being approachable. If we are “too” professional, we can come across as cold or uncaring. It becomes a balancing act. We want them to see us as likeable AND trustworthy AND professional.

As we see patients decline, we are there for them, listening to the most intimate problems they face. They may tell us about embarrassing symptoms or about interpersonal conflicts within their family. We are their confidants. If we do our jobs well, they are comfortable with us and comforted by us.

Most people who work in hospice and palliative care are in the profession because it is our calling. I’m sure every professional has heard the phrase, “it takes a special person.” We are special and we do this job because we care.

Where we get into trouble: It is possible to care too much. One of my mentors taught me the acronym NATO - Not Attached To Outcome. We should not become so involved in a patient’s care that we think we know what’s best for them beyond what they want. We also have to be careful our relationship with the patient does not preclude them from relying on their own social supports. This most often happens when there is negative family dynamics. We especially do not want to get in the middle of the family dynamics. It is not our family. We should be neutral.

Challenge: Teamwork versus Personal Time

Hospice and palliative care is a round-the-clock profession. In an ideal world, the organization would be a well-oiled machine and every team would be appropriately staffed to cover all scenarios. The reality of the hospice business is there are sometimes staffing issues, call-offs, and of course, vacations. My absolute favorite part about working in hospice and palliative care is the team. I love the IDG meetings and the feeling of camaraderie among coworkers with a shared passion. We care about each other. We communicate and we collaborate often. We don’t ever want to let our co-workers down. If one nurse is in the weeds, the others will pitch in to help out. I have never experienced teamwork at this level in any of my other professional roles.

Where do we draw the line? Sometimes our willingness to help out our fellow staff comes at a price. We cancel our personal plans and we say, “I’ll do it.” I'm sure you can remember a time you have done this yourself. Maybe you were asked on your day off to attend a a death. Without a blink of the eye you said, "Yes, of course, happy to help." Your clinical manager never knew about the watercolor class, daughter's softball game or other event you missed.

Over time, though, one needs to be careful about self-sacrifice to the detriment of our own personal lives. If we give too much, we will leave nothing for ourselves. Each person’s capacity for where their line is may be different, but we must draw a line at some point.

Have I solved the great boundary conundrum? I wish. The boundary challenges come with the job. The key to maintaining boundaries is to be aware of our interactions. The ideal boundary “line” is balanced between what is best for the patient and what is best for us. If our boundaries are too restrictive, we risk the patient not feeling that we care. If we do too much for the patient, we risk compassion fatigue.

Lizzy Miles, MA, MSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can follow her on Twitter here.

Friday, September 12, 2014 by Lizzy Miles ·

Friday, September 5, 2014

Stand Up To Cancer Can Have a Palliative Care Focus - How You Can Help

If you have not been on any social media channels, watching TV, listening to the radio, or picking up a newspaper or magazine in the past week, you may have missed that tonight Friday September 5th is the Stand Up to Cancer (SU2C) concert/fundraiser. (Which channel is it on? Doesn't matter it will be simulcast on 31 channels.) What is this and why will I later be asking you to watch it and take notes? Well, keep reading if you want to make a difference in palliative care.

SU2C draws all sorts of celebrities to talk about their personal experiences with cancer whether it be with their family, friends or even themselves. When I first heard of this organization in the late 2000s (the oughts? the oughties? anyway...), I wasn't really sure of their mission, their likely longevity, and I was honestly a bit skeptical if their funds would actually go to cancer research or care. Maybe, I thought, this is just a feel good vehicle for stars to feel like they were making a difference. I admit I may have been a tad bit too cynical about the whole fundraising enterprise back then.

In the intervening years, I became more familiar with the background, work, responsibilities and excitement which comes along with development work. Working on the AAHPM's first major fundraising campaign, Shaping the Future, enforced the importance of motivating people to drive resources to a strong mission. Seeing the impact of the ALS Ice Bucket grassroots campaign was a fantastic learning experience for all of us in hospice and palliative care. I've done my homework on SU2C and frankly they are a pretty stand-up organization when it comes to administering donations. Rated 4 stars on Charity Navigator, they earn high marks for Accountability, Transparency and Financial Impact. They are backed by the Entertainment Industry Foundation, which is an umbrella organization for many causes.

With the help of the American Association for Cancer Research, SU2C has supported 750 researchers and 140 clinical trials organized into Dream Teams focused on translational research (bench to bedside) for rapid impacts in patient care. But when you look at the details of their research teams it is pretty clear the focus is on genetics, and biomedical therapies. The mission statements of SU2C and AACR never explicitly mention anything resembling palliative care or the more benign and accepted supportive care. But this year the theme is 'Survivorship,' and as any palliative advocate knows quality of life (QoL) is a big piece of survivorship. So seeing this big concert extravaganza has my brain thinking a bit more creatively about how HPM can learn from SU2C, and maybe how HPM can influence SU2C in the future.

So here is what we all need to do - watch and engage with the SU2C concert/media storm in the next 24-48 hours. In particular, listen to celebrities experiences with cancer. Sure, some of them will talk about 'ending cancer', 'fighting cancer' (don't get us started on battle language), 'curing cancer' and other lofty long term goals. Yet what we must listen for are the moments where we can say "THAT'S PALLIATIVE CARE!"

I'm talking about the discussions of quality of life while someone is receiving treatment, taking time to be with family, rediscovering spirituality, complicated grief, uncontrolled symptoms which went untreated, health care communication successes and failure. You will hear many situations which are truly about the impact of palliative care (whether it was available or not), and that, my friend, is where we come together and make a list of all the times when palliative care themes, philosophies or approaches were used or could have been used to help people Stand Up To Cancer.

Here is where the magic happens. Once we have a collection of true experiences shared publicly we can reach out to Stand Up To Cancer and start a dialogue about making next year's theme about palliative care. Yes, it is a long shot, but we could sit by or instead we could stand up ourselves to advocate for some of this great support to improve the quality of life of all people with cancer, whether they survive or not. And if that big piñata of a goal doesn't work, we now know a group of celebrities who have shared very real experiences about palliative care and maybe we might be able to reach some of them to champion this great cause.

So will you stand up?

Friday, September 5, 2014 by Christian Sinclair ·

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