Tweet

by Gary Buckholz

I practice full time palliative care, but I am also a strong advocate for family medicine and primary care. I volunteer a significant amount of my time serving on the Family Medicine Review Committee for the Accreditation Council of Graduate Medical Education (ACGME). While most family physicians don’t specialize, the American Board of Family Medicine (ABFM) offers Certificates of Added Qualification (CAQ) in some areas of medicine. Hospice and Palliative Medicine (HPM) and geriatrics, for example, are natural extensions of family medicine. Twelve years ago I pursued HPM training directly after family medicine residency training, however family medicine continues to serve as the foundation for my palliative medicine practice. As many family physicians say—“once a family doc, always a family doc”. I suppose this is also why I will always need to maintain my board certification in family medicine in order to maintain my CAQ in HPM.

When the Institute of Medicine (IOM) report on Graduate Medical Education (GME) financing came out last year, I agreed with the recommendations and thought to myself that primary care specialties as well as the subspecialties of HPM and geriatrics stand to do well if these recommendations are implemented. Dr. Kyle Edmonds nicely summarized the details of the IOM recommendations and the context for HPM.

The American Academy of Family Practice (AAFP) took advantage of this report and released a document or position statement on GME financing as well: Aligning Resources, Increasing Accountability, and Delivering a Primary Care Physician Workforce for America This release came with additional supporting documents:

• Aligning Resources
• Increasing Accountability

These documents describe how family medicine meets the needs of our population in the context of a shortage of family medicine physicians. They advocate that GME financing should align with the needs of the population rather than hospitals. I completely agree with that!

However within these documents, the first of five recommendations is to “Limit payments for direct graduate medical education and indirect medical education to training for first-certificate residency programs.” Interpretation = Don’t fund fellowship programs (including HPM and geriatrics). I was extremely disappointed to see the wording of this specific recommendation.

Are HPM and geriatrics really in a significantly different ballpark as compared to Family Medicine? The ABFM offers CAQs in both of these fields. HPM and geriatrics have documented significant shortages of trained physicians and both meet the needs of our aging population. Both view and care for the patient in the context of their family and the community. You might argue that HPM and geriatrics don’t provide primary care, although the geriatricians I know provide primary care for the most complex patients and when I worked for a hospice, I assumed primary care (at the request of the referring physicians) for many of the most complex patients. Additionally, HPM and geriatrics fall in line with family medicine when it comes to the goal of increasing value and the triple aim of better care, better quality, and lower costs. When compared to family medicine, there are many similar goals and quality outcomes for our patients. However, HPM and geriatrics require additional training because there are additional skills needed for our patients that are not taught within family medicine (or other primary care) training programs.

The AAFP statements ignored recommendations from an IOM report in 2008: Retooling for an Aging America: Building the Health Care Workforce. And ironically, the same month the AAFP released their statements, the IOM released another important report: Dying in America: Improving Quality and Honoring Preferences Near the End of Life. This important report calls for a number of changes to enhance our population’s quality of life and contribute to a more sustainable health care system. In addition to calling for general palliative care skills to be required for training of all clinicians caring for advanced serious illness (including primary care training), the report calls for increasing the number of and funding of HPM fellowships.

The AAFP statements say that subspecialties don’t need funding for training programs because subspecialist trainees are allowed to bill for their services. This is incorrect. GME departments that support training programs do not allow subspecialist trainees to bill due to Centers for Medicare and Medicaid Services (CMS) scrutiny. Since GME departments receive federal funding for some training positions and provide some level of support to all training positions, they do not allow any trainees to bill. CMS policies would need to shift significantly for this to change.

Why then, as the AAFP statements point out, have many fellowship programs developed since 1997 that don’t get financial support from Medicare? These programs depend on funding through private-sector philanthropy or institutional support (departments or hospital budget). Just over 100 mostly small HPM fellowship programs in the United States have scrapped together money in this fashion. Unfortunately that does not come close to meeting the workforce needs of our population.

I am aware that some family medicine residency positions have also been funded without government Medicare funds (over the cap). However, that does not mean it is a sustainable model to grow family medicine to meet workforce needs. While this isn’t a good model for family medicine, HPM, or geriatrics, it might work for some subspecialties with higher department budgets and faculty billing revenue.

A friend of mine who is a Family Medicine Residency Program Director had trouble understanding my dismay regarding the AAFP position. She said, “Well, can’t HPM develop their own advocacy for GME funding separate from family medicine?” The simple answer is “sure”, but it doesn’t make sense to me that any advocacy will be in direct opposition to AAFP. Additionally the AAFP stance is currently one that isolates family medicine instead of building strategic partnerships.

The American Academy of Hospice and Palliative Medicine (AAHPM) and American Geriatrics Society (AGS) are doing important work to grow and retain the HPM and geriatric workforce. A number of collaborative efforts have been undertaken around education and advocacy including a joint outreach to AAFP with AAFP holding firm on their stance for now.

For those of you who are family physicians, I encourage you to reach out to AAFP and tell them how you feel about these position statements and specifically the wording of their first recommendation. I hope there will be a shift over time. It makes sense that AAFP would be a partner in advocacy to meet the needs of our current and future patients and their families. Please leave your thoughts here as well.

American Academy of Family Physicians
Telephone: 800-274-2237 Fax: 913-906-6075
Email: contactcenter@aafp.org
Mailing Address
American Academy of Family Physicians
P.O. Box 11210
Shawnee Mission, KS 66207-1210

Gary Buckholz, MD, FAAHPM is an Associate Clinical Professor at UC San Diego and part of the Doris A. Howell Palliative Care Service. He co-directs the UC San Diego and Scripps Health HPM Fellowship Program. These are his personal opinions and may not represent the views of UC San Diego, Scripps Health, AAHPM or ACGME.

Tweet

by Liam Farrell

Some years ago, on an inpatient hospice locum, where the majority of the hospice residents had cancer, I made a point of visiting the day room as often as I could. It was a source of wonder; whenever I looked in it would be humming with activity. In one corner, a sing-song would be in session, with a volunteer accompanying on piano; in another corner, set up as a little coffee shop, there were animated discussions going on at every table. Outside, the minibus, driven by another volunteer, was drawing up, and some residents burst in the door full of news about their guided trip around the Botanic Gardens. It was a place where death was not considered an enemy.

The locum post also included home visits, and during one of these I attended a patient in a nursing home for the elderly. After the consultation, on the way out, I passed the day room. It was huge, gloomy, and cavernous. The floor was covered with a grubby stained carpet, and the curtains were partly drawn even though it was a dull cloudy day and dark enough outside. A television was blaring; a children's cartoon was on. The old people were lined against the wall; some were rambling and whispering to themselves, others were dribbling, most were just staring into space. An old man sitting near the door pawed at me, and I recoiled involuntarily and fled. There was just too much grief, too much misery to cope with; it was a place where death would have been a real friend. As with the Struldbruggs in Gulliver's Travels, there can be no fear of death when we see the real horrors of eternal life.

But why? Why is there such a gulf in the level of care? Both sets of patients are dying and both are surely equally deserving.

There are, however, some significant differences. The people in one group are younger and are able to communicate their symptoms better, and they have more predictable and shorter prognoses. For every patient dying with cancer, a family doctor will have three or four dying with one of the degenerative diseases of the elderly. If a patient with senile dementia is in severe chronic pain, are any of us going to have the time to visit them regularly during the day and follow them up regularly during the following weeks and years?

As W.B. Yeats said, “Too long a sacrifice can make a stone of the heart;” and if it’s tough for us, consider the 24/7 burden carried by the carers, with no end in sight.

Patients with cancer are different and, dare I say it, easier to look after; it's like getting on a train a few stops from the station. We know that, however onerous the commitment, it won't last for ever. So lots of other passengers jump aboard: distant relatives, neighbours, specialist nurses, hospice doctors, social workers, chaplains. And when the train pulls into the station—bang!—we all jump off in a huge blast of endorphins.

Do-gooders? As John Wayne said, “We're doing good for ourselves.”

Please come join Dr. Liam Farrell as he hosts #hpm chat this Wednesday night. Details below.

Related Resources:
Irish Times Article June, 2015: Elderly care home patients given ‘chemical cosh’ drugs
Journal of General Internal Medicine Feb. 2015: Hospice use among nursing home and non-nursing home patients
New England Journal of Medicine, May 2015: Changes in Medicare costs with the growth of hospice care in nursing homes

Dr Liam Farrell (@drlfarrell) has been a columnist for many years, for the BMJ and Lancet among others. He was a family doctor for 20 years in Crossmaglen, Ireland, and is a former tutor in palliative care. Follow his Facebook page.

What: #hpm chat on Twitter
When: Wed 06/03/2015 - 9p ET/ 6p PT
Host: Liam Farrell  @drlfarrell
Facebook Event Listing: https://www.facebook.com/events/1441986336104144/

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 tchat.io, for ease of following.

You can find Chat Transcript and Chat Analytics courtesy of @symplur

Tweet

by Yael Schenker, MD, MAS

Case:
A 58-year old man receives a left ventricular assist device (LVAD) for chronic end-stage heart failure in 2010. His LVAD is initially placed as a bridge to transplant. However his post-operative course is complicated by persistent chronic infection, multiple embolic strokes and prolonged hospitalization. He is taken off the transplant list. In 2012 he is readmitted to the hospital from a long-term acute care facility for aortic valvuloplasty and LVAD weaning studies. This hospitalization is complicated by a hematoma causing nerve compression in his right leg and he is no longer able to walk. He tells the cardiothoracic surgery team that he wants his LVAD to be turned off and the team calls a palliative care consult.

Discussion:
The left ventricular assist device (LVAD) was initially designed as a bridge to heart transplant. Open-heart surgery is required to implant an LVAD, which is attached to the left ventricle and the aorta in parallel with the patient’s native cardiovascular system. A small pump is placed in the patient’s abdominal cavity and connected to external battery controlled system that can be worn over or under clothing. (1)

In 2003, the LVAD was approved as destination therapy (LVAD-DT) for patients with chronic end-stage heart failure who are not candidates for a heart transplant. This decision arose from a prospective randomized controlled trial conducted between 1998 and 2001 comparing LVAD-DT to optimal medical management (OMM) for chronic endstage heart failure, in which patients receiving LVADDT showed improved survival over patient receiving OMM at 1-year (52% vs. 25%, p = 0.002) and 2-years (23% vs. 8%, p = 0.09). (2) Improved survival rates with LVADs are coupled with frequent and disabling complications including serious infections and strokes. (1)

Increasing numbers of patients living longer with LVADs has led to growing recognition of an important role for palliative care that may begin before implantation of an LVAD and continue through the end of life. (3) A palliative care clinician may be asked to assess whether LVAD implantation is consistent with a patient’s goals and/or to assist with a transition to comfort-oriented treatment if the decision is made not to implant a device. Palliative care clinicians may help patients and families to complete advance directives that name a surrogate decision maker and describe the circumstances under which withdrawal of the LVAD device would be desired. Palliative care clinicians may also help to assess physical, psychological and spiritual needs that arise with LVAD use and refer patients and families to appropriate resources. Transitions in care, such as the determination that a patient with an LVAD is no longer a candidate for heart transplant, are important opportunities for palliative care clinicians to acknowledge emotions and provide support. A recent article by Goldstein et al provides sample communication techniques for each of these time points. (3)

Most commonly, palliative care clinicians are called to assist with the decision about whether to discontinue a LVAD, as occurred in this case of the month. At this advanced disease stage, not all patients will be able to communicate or have capacity to make decisions. However, conversations should include patients if they are able to participate and want to be involved. A first step is to assess what the patient and/or family understand about heart failure and the LVAD. Opening with a simple question such as “tell me what you understand about your disease” or “tell me what the doctors have talked with you about so far” can offer significant insights.

Clinicians should follow up by asking what the patient and/or family want to know before offering additional information or clarifying misperceptions. The next step is to talk about overall goals of care. “Help me to understand what is important to you” is a good question to initiate this discussion. In this case, the patient described an acceptable quality of life as being able to walk and live independently. Once the patient’s goals have been articulated, the physician can help to develop a treatment plan that matches the patient’s values. (3) In this case, after multiple discussions, the patient made it clear that the burdens of the LVAD now outweighed its benefits for this patient.

Ethical guidelines and legal precedents support a patient’s right to request the withdrawal of any medical intervention, regardless of whether the patient is terminally ill and regardless of whether the intervention prolongs life. (4) If a patient lacks capacity, these rights extend to the appropriate surrogate decision maker. No ethical or legal distinction is made between different types of life-prolonging interventions (i.e., LVADs vs. feeding tubes vs. hemodialysis). Some clinicians have moral objections to turning off an LVAD. In such cases, the clinician should inform the patient of these objections without imposing his or her personal beliefs and help to find a colleague who can fulfill this role.

Turning off an LVAD requires a coordinated effort between physicians and nurses. The palliative care team can be helpful in answering questions and providing support for clinical staff as well as the patient and family. Most often when a LVAD is turned off the patient dies within minutes. However, if there is intrinsic heart function the patient may live for several days. Patients and families should be prepared for these outcomes. Medications such as opioids and benzodiazepines are used to ensure that the patient is comfortable. Premedication is important because most patients will have a significant decrease in cardiac output after the device is turned off.

Resolution:
The LVAD was turned off at the patient’s bedside. Morphine was given by both bolus and infusion to help control symptoms of dyspnea after the LVAD was turned off. He died comfortably approximately 48 hours later.

References:
1. Rizzieri AG, Verheijde JL, Rady MY, McGregor JL. Ethical challenges with the leftventricular assist device as a destinationtherapy. Philos Ethics Humanit Med. 2008;3:20. (OPEN ACCESS PDF)

2. Rose EA, Gelijns AC, Moskowitz AJ, Heitjan DF, Stevenson LW, Dembitsky W, et al. Long term use of a left ventricular assist device forend-stage heart failure. N Engl J Med. 2001;345(20):1435-43. (OPEN ACCESS PDF)

3. Goldstein NE, May CW, Meier DE. Comprehensive care for mechanical circulatorysupport: a new frontier for synergy withpalliative care. Circ Heart Fail. 2011;4(4):519- 27. (OPEN ACCESS PDF)

4. Lampert R, Hayes DL, Annas GJ, Farley MA, Goldstein NE, Hamilton RM, et al. HRS ExpertConsensus Statement on the Management ofCardiovascular Implantable Electronic Devices(CIEDs) in patients nearing end of life orrequesting withdrawal of therapy. Heart Rhythm. 2010;7(7):1008-26.


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 may have been changed by Pallimed editors to help with anonymity. Links and minor edits are made for clarity and Pallimed editorial standards.

Tweet

by Amy Clarkson

As a parent, one of the incredible mysteries has been to watch each of my children come into this world with a predetermined personality. Our parenting style seems to have little effect on these inborn traits. We know that our ultimate personality is a grand mix of what we come into the world with, our genes, and the life experiences we have. One such nuanced trait that is both nature and nurture based is the optimism/pessimism scale.

You can surely place yourself on this scale as you read this. Maybe you’ve been called an idealist, or negative or someone who always looks on the bright side. It’s important to realize that both optimism and pessimism have pluses and minuses, especially with end of life issues.

These traits in general are things that help us manage our expectations of the future. An optimist will assume a positive result, while a pessimist expects the negative.

The way we tint our vision of events, whether rose or blue tinted, is also a way to manage our emotions related to these events. Optimism acts to buffer anxiety and can raise us up and out of a gloomy reality. Pessimism also protects our emotions. By expecting the worst, we insulate ourselves from disappointment and create a possibility for a pleasant surprise if things turn out better.

One way to consider the optimism/pessimism concept is to consider it as a fluid scale. We slide toward one side or the other depending on if we are thinking about work, relationships, world events, etc. Alternatively, we may consider ourselves realists, always right in the middle, finding a good mix of hoping for the best, while still preparing for a worst-case scenario.

Knowing that these traits are inherently protective, it’s no surprise that with end of life issues I often encounter the extremes. Moreover, what I notice is like most things in life, it’s at the far extremes that these traits move from being healthy to unhealthy.

I’m all for thinking positive, but when Mrs. W was confronted with her new cancer diagnosis and refused to start treatment because it was “surely a mistake, I most definitely do not have cancer” her extreme optimism is now be labeled denial. While denial will certainly protect ones emotional well-being, it does little to protect the physical reality of disease.

Mrs. W’s case is extreme, but there are more subtle ways that extreme optimism causes harm. Unfortunately, it is quite common for people on hospice to put off important conversations, financial decisions, and delay dealing with things they should because their optimism clouds the reality of how serious their condition is or how much little time they have left.

On the other end is extreme pessimism. Mr. H refused starting a therapy that would add both years and quality to his life because “What’s the point! Now that I have cancer, I’m done trying to live!” We sometimes label extreme forms of pessimism as depression. When someone is paralyzed with inaction because of their negative attitude, it may protect them from being disappointed but does nothing to improve reality.

It’s nearly impossible to move someone from the extremes at the end of life. Understanding that a lifetime of personality is at play may at least garnish some compassion.

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: "Teeter-Totter" by Laura Bernhardt via Flickr/Creative Commons

Tweet

by Kyle Edmonds

Last year, the Institute of Medicine gave us the near-simultaneous release of two reports: Graduate Medical Education That Meets the Nation’s Health Needs and Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. These reports address two related aspects of reaching the IOM’s triple aims of better care, better health, and lower costs.

Even casual readers of this blog will know that there is a problem with the number of trained hospice and palliative medicine (HPM) physician specialists in the US – with an estimated 6,000-18,000 physician shortage in 2010 alone. According to the IOM Dying in America report, there were 6,400 physicians board-certified in HPM by ABMS between 2008 and 2012, though the practice styles of these physicians are unknown. Unfortunately, HPM is not individually monitored by HRSA National Center for Health Workforce Analysis (pdf), which monitors physician workforce. In these reports, HPM is contained in the “other patient care” category of physicians, which is one of the few projected to decrease in FTEs by 46% by 2025. It is no wonder, then, that the IOM Dying in America report highlighted the limited number of palliative specialist physicians (as well as nurses, social workers, spiritual counselors) as a major deficiency with regard to progress since the previous IOM Approaching Death report in 1997.

Back in 2010, the AAHPM Workforce Task Force laid out a model for physician workforce need to staff hospice and hospital-based palliative care and concluded that “the annual need for new physicians [leaving fellowship] just to keep pace would be about 269 physicians for the middle estimate and about 472 physicians for the high estimate. More will be needed to prepare for growth and aging of the population. Training capacity thus needs to expand considerably.” Since that time, we have seen disruptive changes in the financing of health care, robust growth in community-based palliative care and the closure of one of the country’s largest HPM training programs.

When it comes to workforce projections, however, the IOM GME report warns: “Concerns that the nation faces a looming physician shortage, particularly in primary care specialties, are common. The committee did not find credible evidence to support such claims. Too many projections of physician shortages build on questionable provider–patient ratios, fail to consider the marked geographic differences in physician supply, and ignore recent evidence of the impacts of more effective organization, new technology, and deployment of health personnel other than physicians…” Near-simultaneously, the IOM Dying in America report stated: “…entities such as health care delivery organizations, academic medical centers, and teaching hospitals that sponsor specialty-level training positions should commit institutional resources to increasing the number of available training positions for specialty-level palliative care.”

A Primer on Graduate Medical Education (GME)

Physician education is divided into two major phases: undergraduate (medical school) and GME (internship, residency, fellowship). Medical school is paid for in a traditional sense via scholarships, personal investment and loans. In contrast, graduate medical education has been publically funded since the mid-1960s. This funding was approximately $15B in 2012, with 90% of the funding being provided by Medicare and Medicaid. Presently, we publically fund 1 FTE per trainee for initial certification period GME programs (first residency programs) and 0.5 FTE per trainee for those in advanced training, such as a hospice and palliative medicine fellowship. These funding systems are highly complex and laid out well in the IOM’s report. Suffice it to say that healthcare delivery has changed somewhat since the 1960s and the priorities of the present funding structure are out of alignment. In their review, the IOM committee found a marked lack of transparency, variation in funding levels and misaligned priorities in this system of funding. This led them to provide several recommendations for change to achieve the Committee’s goals to (emphasis mine):

1. “Encourage production of a physician work¬force better prepared to work in, help lead, and continually improve an evolving health care delivery system that can provide better individual care, better population health, and lower cost.
2. Encourage innovation in the structures, locations, and designs of GME programs to better achieve Goal 1.
3. Provide transparency and accountability of GME programs, with respect to the stewardship of public funding and the achievement of GME goals.
4. Clarify and strengthen public policy planning and oversight of GME with respect to the use of public funds and the achievement of goals for the investment of those funds.
5. Ensure rational, efficient, and effective use of public funds for GME in order to maximize the value of this public investment.
6. Mitigate unwanted and unintended negative effects of planned transitions in GME funding methods.”  

Alternative Plans

In August 2013, "Improving Value in Graduate Medical Education" from the the Council on Graduate Medical Education emphasized that “Increases in GME funding should prioritize training programs that have a particular emphasis on new competencies needed to meet the changing health care system…to accelerate physician workforce alignment with population and health delivery needs.” They ask that particular attention be paid to specialties which prioritize “1) training in a variety of community settings, 2) treating diverse populations, and 3) emphasizing team-based care, care coordination, telemedicine, and efficient care provision.” Unfortunately, following this description of some of the key aims of HPM, they proceeded to omit HPM from their “high priority” specialty list.

Next Steps

There is obviously tremendous work going on with regard to GME and it is intendant upon those of us in HPM to be proactive. GME needs to be more transparent, more population-based, more focused on quality “patient-centered and family-oriented care” and HPM will need to play a role to achieve those aims. As the IOM GME, COGME and AAFP reports demonstrate, however, HPM is not on the radar of those making the policy recommendations. As a field we need to brainstorm an approach to moving forward to raise our profile and ensure we are in a position to play that role. In order to fulfill the charge of the Dying in America report, do we need to:

1. Revisit and expand the concept of the “academic hospice” in the context of a push for community-based GME?
2. Develop another HPM workforce study given the drastic changes in the field since 2010?
3. Partner with other organizations to create a comprehensive workforce strategy for interdisciplinary, specialty palliative care & hospice?

I look forward to hearing your thoughts. Kyle P. Edmonds, MD is a palliative physician with a special interest in social media, health system reform and clinical bioethics. Follow @kpedmonds

Tweet

Attitudes, values, and beliefs are bound to shift when people become ill, especially when active treatment for acute illness shifts to palliative care. During tonight’s #HPM chat, guest moderator @meredithgould will focus our conversation on shifting attitudes, values, and beliefs about health and spirituality (not religion!) for patients, caregivers, and providers as well.

Meredith Gould, creator of the #chsocm (church social media) hashtag and #chsocm chat founder, recently created #hlthsp to tag content and conversation about health and spirituality. She and Regina Heater (@reckshow) anticipate launching that a monthly Health and Spirituality chat #hlthsp this summer.

Check out more Pallimed posts on Spirtuality and Religion here.

What: #hpm chat on Twitter
When: Wed 5/27/2015 - 9p ET/ 6p PT
Host: Meredith Gould Follow @meredithgouldc

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 tchat.io, for ease of following.

Chat Transcript and Chat Analytics can be found courtesy of @Symplur

Tweet

by Sydney Dy

So many wonderful things have happened during my 15 years helping develop and lead so many of our palliative care programs throughout Johns Hopkins Medicine. As a big highlight, I was asked to be the staff speaker at our Cancer Center's recent annual memorial service. It was such a moving experience, with our lobby full of 300 family members and many staff who spent countless hours putting this together, and a lot of love. The most amazing part was the mother of a patient we had who died at a young age after her transplant, that we all felt so badly about, who told us she came especially to thank us for making sure she was comfortable.

Inspired by Alex Smith's sharing of his memorial service remarks on GeriPal last year, I share here some of what I said. The services are posted on our website if you want to see what it is like as a model for your own program.

---

----------
Everyone told me to speak from my heart, and to make this personal, so that is what I will try to do.

I am so honored to be asked to speak to you tonight. I am here as the physician with our pain and palliative care program now for many, many years. I am also here as the daughter of Lester Morss, who was a patient here for a very brief time. My mom and my dad’s sister are here with me to honor him and all of you. A year ago today, my father, who was an avid photographer, was taking his last pictures – at my daughter’s bat mitzvah rehearsal. Eleven months ago today, he died at home, with all his family around him, just a few hours after telling everyone goodbye.

And I am here representing my amazing transdisciplinary team who has worked for so many years to improve living with cancer here, and so many who have supported us, and all the staff here.

Mostly, I am here to thank you all for sharing your loved ones with us and allowing us into this most precious and intimate part of living: caring for your loved ones at this most difficult time in your lives. We thank you especially for what you have taught us: we have learned so much from you that allowed us to take the best possible care of our family members when this happened to them. So I thank you all, for lending us your loved ones for a time, for helping me to help my father and my family, because although there are no right answers, at least I had a path in front of me to follow, paved by my learning from you. An example set by you of compassion; of caring; of amazing strength; of the power of love; of how to survive the most challenging of circumstances; of honoring those that you have lost; of being a better person every day, because they lived. They lived. And we remember, we remember them. We remember them with you today. And for every patient I see, I try to take that extra moment, to bring in something that you have taught me. I thank you for that as well: for everything that you have done to make us a better physician, a better nurse, a better social worker, a better chaplain. A better daughter, a better mother. We are part of your legacy. We know the physician is the least important part of the team – and the most important part is you, the family and friends. What matters is not the types of treatments we gave you, but the legacy and love that you shared and that is still here– that they are still with us.


Caring for someone with cancer is so hard. Cancer is suffering and losing everything and chaos and trying to make it through another day. The terrible things i did – being short with my loved ones despite my best intentions – and the wonderful things you did – forgiving, kindness to each other, talking about things we never talk about, together. And grieving is so hard - grieving is wishing that things had been different and thankfulness for what we had and forgetting the things we so desperately don’t want to forget. And as my daughter wrote: wishing for just one more day.

We thank you for allowing us into the most sacred and intimate moments of your lives – to see the very essence of your souls, the amazing love and caring and the incredible things you have done, what you and your loved ones were able to accomplish despite such tremendous suffering. We thank you for teaching us so much, for teaching us what will allow us to take better care of all the future cancer patients who walk through our doors. We thank you for all the incredible work that you did that makes our work possible. I know how little what we do helps – but I hope it does help, even a little. Of all the things I’m working on personally this year, the most important has been forgiveness. This has taken me such a long way: forgiving all the crazy things that happened, forgiving myself, for the things I wish I had done. It has helped me so much to let these things go. And I hope you can forgive us too: for not listening as well as we should, for thinking a treatment would work when it didn’t, for not calling you back right away when I know you were waiting by the phone. I hope you can forgive us, because we tried . And I hope we can do better. A little better every day, because of you.

From my heart, from all of us, I thank you for helping us heal from our own losses. For taking care of your loved ones, helping us to give back, makes it possible for us to go on. For me personally, it has been such a gift this year to work with you. I thank you for all you have taught us and helping us by coming here tonight.

Maya Angelou died this year also. And here’s a bit of a poem that helped get me through this year:

And when great souls die,

after a period peace blooms,

slowly and always

irregularly.

Our senses, restored, never

to be the same, whisper to us.

They existed. They existed.

We can be. Be and be

better. For they existed.

And we remember them.

Sydney Dy, MD, MSc is a palliative care physician and researcher in the Departments of Health Policy and Management, Oncology and Medicine, and Duffey Pain and Palliative Care Program, Johns Hopkins.

Tweet

by Tom Leblanc

Each time I attend an AAHPM Annual Assembly, I’m amazed at the growing number of attendees. Amid those thousands of people, it’s easy to forget that we have a pretty serious workforce problem on our hands. But then I attend the Research Special Interest Group (or “SIG”) meeting, and I’m quickly brought down from my blissfully ignorant orbit to face another striking reality: clinical workforce issues also signal challenges for research and mentorship in our field.

We don’t often talk about this, but shortages in the workforce limit our ability to do high-impact, innovative, important research. Even the largest, most research-oriented centers may have just one senior researcher on faculty, and some prominent institutions have none. In this restrictive environment, how can a student, or trainee, or junior faculty member even get started doing palliative care research? How can we meet the mentorship and “start-up” needs of developing researchers in our field?

In our Research SIG discussions, much of our time is spent talking about how to find mentors or how to get involved in palliative care research. This is clearly an area of need in our field. So as this year’s Research SIG Chair, and as someone who spends much of my time thinking about (and trying to do!) research in palliative care, I thought it might be helpful to host this TweetChat on research-related issues in palliative care. Let’s talk about challenges, opportunities, how to get started, how to find a mentor, and even discuss ideas about important research priorities for the field.

Join me @tomleblancMD this Wednesday night at 6pm PST to explore and discuss issues in #hpm research!

Topics for the chat

T1 – What advice would you give to someone who wants to get started in #hpm research?

T2 – What are the most important priorities for research in #hpm?

T3 – In what clinical scenarios do you find yourself wishing you had good data? #hpm

Some useful resources:
AAHPM Research page
AAHPM Research Scholars program
AAHPM year-long mentoring program
AAHPM Research SIG page

A few interesting papers about mentorship:
“Having the right chemistry: a qualitative study of mentoring in academic medicine.”
“Making the most of mentors: a guide for mentees”

Some resources on research priorities in our field:
NINR’s “Innovative Questions” Project
NINR’s “Innovative Questions in End-of-Life and Palliative Care”
“Palliative care research—priorities and the way forward”
“Research priorities in pediatric palliative care: a Delphi study”
“A national agenda for social work research in palliative and end-of-life care”
“Research priorities for palliative and end-of-life care in the emergency setting”
“Research priorities in geriatric palliative care: an introduction to a new series”  (note that there are several articles in this series)

What: #hpm chat on Twitter
When: Wed 5/20/2015 - 9p ET/ 6p PT
Host: Tom LeBlanc Follow @tomleblancMD
Facebook Event Listing: https://www.facebook.com/events/584716504995684

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 tchat.io for ease of following.

You can find Chat Transcript and Chat Analytics courtesy of @Symplur

Tweet

by Don Zacharias

For some time, I have had an interest in the complexities of the Live Hospice Discharge. What would seem to be a happy occasion for the patient and family (going off hospice!) is often a time of unexpected stress, and the transition off hospice can be as complicated as the hospice admission. In many cases I have noted mixed feelings as the patient goes from the ranks of the “dying” to ranks of the “living”. Sometimes the patient verbalizes those mixed feelings with statements like, “I guess I’m I not dying fast enough!” One family was heard to report discharge from hospice felt like a “divorce”.

And the public is becoming more aware of hospice discharges. As Paula Span (1) points out in her New York Times post 'Bounced From Hospice':

 “. . . hospices have lamented for years that dying patients wait too long to call . . . and then, in a substantial minority of cases [the patients are] getting bounced.” Furthermore, “. . . families that have agonized about the decision and finally called for help then feel betrayed when hospice withdraws . . .”

I began to wonder if the difficulty I saw with a fair number of hospice discharges was a random occurrence, something related to a specific patient population or something more universal. To get a better understanding of the Live Hospice Discharge I searched for articles that might provide some insight.

Most of the articles found discussed the statistics that we are familiar with – that about 20% of hospice patients are discharged alive from hospice, 1/3 initiated by the patient or family, and 2/3 initiated by the hospice program, mostly due to an extended prognosis (2). The 6 month mortality for this discharged group is about 35%, indicating that many patients were still appropriate for hospice care. And about 31% of those that do die within 6 months of discharge never get reenrolled. (3,4)

I was finding very little written about the emotional aspects of the Live Hospice Discharge until recently finding an published article (5) discussing this topic, authored by Assistant Professor Rebeka Watson Campbell at the University of Texas Medical Branch at Galveston School of Nursing. This study chronicled the experiences of patients and families discharged alive from hospice programs in Texas. From the interviews, there were a number of recurring themes of unexpected suffering discovered among the hospice “graduates”, their families and their caregivers. The themes of suffering included: abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, anticipation of future physical decline, and the ongoing strain on the family and caregivers that are bearing seemingly endless witness to their loved one’s slow dying process.

This article brought to my attention how widespread the problem of the hospice discharge can be. Often patients that improve on the hospice service will rightly attribute their ability to go off hospice directly to their excellent hospice care. And, when faced with losing the care that they have come to depend on, they can understandingly feel stressed and disappointed. Without hospice care, the improved quality of life that has become their new baseline is now uncertain. Supporting the patient and family during this time of transitions involves a real team effort that includes early anticipation of a potential discharge, special counseling and thorough coordination of care. Being tuned in to the themes of suffering can guide the development of a bridge program for discharge:

START EARLY
Based on the depth of suffering reported with Live Discharges, it would seem important to start planning early on for a possible later discharge, especially when the patient has a non-cancer diagnosis with potential for improvement. It could be beneficial in some cases to briefly discuss the potential for a later discharge as early as the first visit. The subject could then be brought up gently at future visits when appropriate. These discussions might help prevent the shock that often occurs when the discharge topic arises late in the course of care.

PRESENT DISCHARGE IN A POSITIVE LIGHT
With all discharge discussions during the course of care, keeping a positive spin on the discharge would seem important, always making it clear that the hospice program has an open- door policy should re-admission be needed. Keeping too positive a spin on a discharge might encourage false hope of a recovery, though. Going off hospice could be presented as just one possible outcome when presenting the best, the worst and the most likely scenarios.

FOSTER INDEPENDENCE
Some patients and families can show an excessive dependence on hospice early on and could be candidates for a difficult discharge down the road. Fostering independence, important with all hospice patients, would appear even more important with this population.

PROPER DOCUMENTATION
The time to document the discharge plans in the patient’s record would be after that shared decision is made. Prior to this time, the record should only indicate that the policy for discharge was discussed. Once the record mentions and demonstrates that the patient is no longer hospice appropriate, then, a date for discharge should be set, the plans outlined in the chart notes and the discharge program set into motion.

COORDINATE DISCHARGE PLANS
The discharge plan needs to be clearly understood by the patient, the family and the entire hospice team. There should be assurance that on discharge there will be reliable caregiving. Transition of any needed durable medical supplies to a new DME provider should be timely. An adequate supply of listed medications should be provided.

There should be arrangements for follow up with the patient’s Primary Care Provider (PCP). Often the PCP has deferred many decisions to the hospice team. Ongoing updates to the PCP while the patient is on hospice can help keep the PCP “in the loop” so when the PCP gets that call to coordinate follow up care, he or she will feel more on top of things, more likely to provide good follow up care and less likely to feel suddenly burdened with their patient. A visit by the hospice doctor prior to discharge can reinforce the plan for post-hospice follow up and ongoing care. This could also be a time to explore any unanswered questions. It is also an opportunity to clearly outline the indications for hospice reenrollment.

PROVIDE ONGOING CONTACT
On discharge, following through with phone contact is essential. Routine phone follow up from the patient’s Case Manager, Social Worker, Aide or other staff member should help dispel some of the loneliness, frustration and uncertainty. Continuing some volunteer services can provide an additional level of contact.

The article by Dr. Watson Campbell is eye-opening and promotes a better understanding of the effects of the Live Discharge. It should encourage the planning of a smooth transition plan off the hospice service, helping the interdisciplinary team, the patient and the family better handle the emotional “paradox” of the hospice discharge while getting the patient re-enrolled at the right time.

Don Zacharias MD is a Hospice Physician with Hospice Maui and also with First Call Hospice in Citrus Heights, California. He was a busy Family Practice doctor in Sacramento for 35 years. He and his wife moved to Maui in 2013 where he enjoys hiking, ocean activities and playing piano. You can find him on Twitter @donzhawaii

Acknowledgement – Thanks to Dr. Rebekah Watson Campbell and to Hospice Social Worker Megan Crouse for their valuable input.

Photo Credit: 'running eshcer-ed' by izaarbeltza via Flickr Creative Commons

References
1. P Span: Bounced from Hospice. The New Old Age (blog) Jan 7, 2014

2. JM Teno, M Plotzke, P Gozalo, V Mor: A National Study of Live Discharges From Hospices. J Palliat Med 2014 Oct 17 (10). 1121-7

3. JS Kutner, SA Meyer, BL Beaty, CT Kassner, DE Nowels, C Beehler: Outcomes and Characteristics of Patients Discharged Alive From Hospice. J Am Geriatr Soc 2004 Aug: 52(8): 1337-42

4. K LeSage, AJ Borgert, LS Rhee: Time to Death and Reenrollment After Live Discharge From Hospice: A Retrospective Look. Am J Hosp Palliat Care 2014 May20 [epub]

5. R Watson Campbell: Being Discharged from Hospice Alive: The Lived Experience of Patients and Families. J Palliat Med 2015 Feb 26 [e pub]

Tweet

by Vickie Leff

Today I started my training for my eighth marathon, the Chicago Marathon in October 2015. I started running as a way of relieving stress during my first job as an oncology social worker at Beth Israel Hospital in Boston in 1984. Running along the Charles River was extremely therapeutic! I had no idea how emotionally challenging the work would be, and yet I absolutely loved it. My training as a clinical social worker taught me the most invaluable defense against burnout: self-awareness (aka dual- awareness or counter transference). This is the one learned skill that I have used every single day in my practice working with end of life and cancer patients. I don’t think about it anymore because it’s second nature to me, but I teach other providers about it every day. Self-awareness, learning about how our reactions impact our patients’ families and ourselves is, in my opinion, the most important thing you can learn to do as a clinician that will both improve your practice and protect you against compassion fatigue and burnout.

Like resilience and self-care, training for a marathon requires just a couple of things: focus on a goal, time commitment and willingness to self-examine. OK, a good pair of shoes is also required! Using that as a metaphor is how I like to think about resilience in palliative care. You could go out and run 26.2 miles, but without training you’re going to hurt yourself and may never run again. With practice, and small successes you can reach your goal and that finish line; and may have even learned something about yourself in the process.

As most marathon runners will tell you, it’s about the training. When do you need water; when should you take a walk break; what is the best gear; how do you deal with hitting a wall, what are the roughest miles for you; what should eat the night before? The only answers to these questions come from training and trial and error. I think it’s the same for assessing what you need to stay resilient throughout your career – what works for you; what should you do when you start to get “crispy”, what are the signs you take a walk break; how do you reward yourself? Of course, you can run a marathon just by increasing your mileage each week and not thinking much more about it. But in my experience, your marathon will go better and will have lots more meaning if you take stock and self-examine along the route. We all know about burnout and compassion fatigue. Thankfully there have been many wonderful studies and articles about how burnout affects providers in palliative care. I’m glad so much attention is being paid to our sanity and longevity. It’s time to adopt some strategies for a lifetime so that we can continue this work, and survive, for the long haul. I encourage all of us to think about our commitment to resilience and self-care as a marathon, not a sprint. Developing habits and insights that can carry us through to a finish line, not just the first water stop.

Take time to think about this work we do and how it impacts you and how you impact your patients and families and co-workers. This skill and knowledge will surely take you to the finish line and hopefully you won’t be last!

Vickie Leff, LCSW, ACHP-SW is a Clinical Social Worker for Palliative Care at Duke Hospital in Durham, NC. She has run (slowly) 7 marathons so far and still hasn't come in last. She and her husband live in Cary (Containment Area for Yankees) but, will soon move to Durham because their kids went off to college. You can contact her at victoria.leff - at - dm.duke.edu 

Photo Credit: Vancouver Sun Run Alain Limogenes via cc
Image Credit: Christian Sinclair for Pallimed avail via cc