The Palliative Pulse, August 2014

A Retiring Social Worker Reflects on her Palliative Care Journey

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Palliative care social worker Sue Degnan (left) and her successor Jaime Puzelli of Huntington Hospital

In the early 1990s, social worker Sue Degnan knew something was missing from the care her Oncology team was delivering. She watched doctors and nurses come and go from hospital rooms without taking the time to truly communicate with their patients and families, especially those facing serious illness, and thought her staff could be doing more.

“A lot of families were struggling because they didn’t get to sit down and have conversations with their medical professionals. They didn’t know they had choices when it came to their treatment options and I thought that the relationship between patient and clinician was greatly lacking.”

That’s when Sue discovered what palliative care was and how it could fill the gap by adding an extra layer of support for patients and families as they navigated through uncertain waters.  At the time, less than 5% of all hospitals in the United States were offering palliative care services, but that didn’t deter Sue and a few of her colleagues at Huntington Hospital in New York from taking action.

“After discovering that not only does it help patients facing serious illness immensely but that there’s a strong business case for the hospital as well, I knew it was something we had to push for. From that moment on, we began a grassroots movement to offer this kind of care as much as possible.”

That movement has turned into a successful palliative care program at Huntington which now features a full interdisciplinary team of trained palliative care specialists who see an average of 95 palliative care consults a month. The team’s development is a reflection of the growth of palliative care in the United States as well. At present, 61 percent of all hospitals with 50 beds or more offer palliative care programs; a far cry from the days where Sue began her uphill climb to help implement a palliative care program at her hospital.

Now, as Sue enters retirement after an accomplished 52-year career, she is able to reflect on what her team has accomplished.

“That I’d be able to retire and see something come to life that I always had a passion for is a wonderful thing. There’s not a lot of people that can say that they did what they set out to do and have no regrets about how they got there.”

Listen to this CAPC Podcast with Sue Degnan as she discusses what it takes to succeed in the role of the palliative care social worker and how she believes that her successor is the right person to continue her legacy.


 10 Reasons to Become a CAPC Member Organization

CAPC is becoming a membership organization in 2015. The value of membership is a strong partnership between your organization and CAPC. Among the many benefits of membership, you and your organization will be able to take advantage of:

  1. Virtual Office Hours for “just in time,” small-group access to field leaders, whether you’re trying to improve team billing practices or implement palliative care in your ICU
  2. Ready-to-use tools and technical assistance for palliative care specialists and teams in all settings
  3. Clinical online training pathways for all frontline clinicians that integrate best practices with highly interactive skill-building. Generalist clinicians can receive CAPC Designation. Training is linked to CME/CEUs
  4. Operational skill-building for both well-established and new palliative care specialists. Training is linked to CME/CEUs
  5. Leadership support that focuses on a rapidly changing environment, including leveraging resources to increase efficiency, metrics needed to ensure impact and seamless adoption of best practices from other programs.
  6. Comparative data and reporting through the nation’s only repository of data on palliative care team characteristics and best practices – the National Palliative Care Registry™
  7. Convening opportunities, such as Special Interest Groups that let you collaborate with colleagues who share your interests and challenges
  8. Access to all CAPC web conferences
  9. Deep discounts for the Journal of Palliative Medicine and the CAPC Seminar
  10. If you join in 2014, you will save for two years!

To learn more and to join, click here.

My Palliative Care Moment

Sharing the inspiring stories of why specialists choose palliative care as a career

This month, watch Jay Horton, Director of Palliative Care Consult Service at the Icahn School of Medicine at Mt. Sinai Hospital, discuss why he chose palliative care as a career.

Do you or your patients have a palliative care moment to share? Contact Dan Altano at

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Palliative care can help those facing serious illness

The Journal Times out of Racine County (which stretches across Chicago and Milwaukee) is spreading the word about palliative care by pointing readers in the direction of evidence that shows how palliative care can help patients and families facing serious illness.

In a recent article, Dr. Anthony Komaroff, a physician and professor at Harvard Medical School, answered a reader’s question about available resources for people dealing with advanced cancer, by explaining how palliative care can help. In her response, Dr. Komaroff highlighted a recent study conducted by Harvard-affiliated researchers that surveyed almost 400 men and women with advanced cancer.

“The study found that human connection, rather than heroic life-saving efforts, mattered most to patients and their families,” said Dr. Komaroff. “(Patients) want to make the decision about what to do, based on their assessment of their situation and their values. They often discuss this with the family and friends they trust before making their decision,” she added.

To read the full story, click here. Watch this video that shows how palliative care empowers patients to make decisions that matter to them.

Proposed Requirements for Advanced Palliative Care Certification Program: Submit Input by TOMORROW

The Joint Commission is proposing changes to the Advanced Palliative Care Certification Program requirements and is seeking input from the field. Palliative care providers are encouraged to review and comment on these standards by Thursday, August 21.

The Joint Commission has identified areas for enhancement in the requirements, which include: increased focus on care of patient and family; referrals to community resources and hospice providers; assessments by members of the interdisciplinary program team; palliative care for pediatric patients and families; as well as orientation and education for interdisciplinary program team members.  Of note, however, is that the revisions would not require a physician to be included as a member of the “core interdisciplinary program team.  The Joint Commission welcomes input on this and all other requirements via a short online survey.

Webinar Tomorrow: Palliative Care & Depression—Clinical Challenges

Being able to recognize the signs and assess the symptoms of depression is crucial to palliative care providers. To explain how mental health providers can help with palliative care by being able to appropriately recognize, assess, and provide intervention to patients with depression, the Coalition for Compassionate Care of California (CCCC) is holding a web conference Thursday, August 21, at 1:00 p.m. PST.

The web conference will feature speaker Scott A. Irwin, PhD, Directory of Psychiatry and Psychosocial Services at UC San Diego Moores Cancer Center. Click here for more information and to register now.

Cambia Health Foundation to hold Sojourns Awards and Summit October 2

Cambia Health Foundation is holding a luncehon to honor the Foundation’s inaugural national cohort of Sojourns Scholar Leadership award recipients on Thursday, October 2, 2014, at the Sentinel Hotel in Portland, Oregon.

The Sojourns Scholar Leadership Program is a new initiative designed to identify, cultivate and advance the next generation of palliative care leaders. Anthony Back, M.D., Associate Professor of Medicine at the University of Washington, will deliver the keynote address. Following the complimentary awards luncheon, Cambia Health Foundation will also be holding a summit featuring regional and national palliative care leaders. To learn more about both events and to join, click here.

‘Lessons Learned’ from Electronic Palliative Care Coordination System Implementation

NHS Improving Quality (NHS IQ)—a group dedicated to the improvement of care across England—has produced a resource to support organizations planning implementation of an Electronic Palliative Care Coordination System (EPaCCS). The system records and communicates key information about the wishes and preferences of those facing serious illness.

The new resource, ‘Lessons Learned’, provides useful tips and information which has been collated from working with sites who are currently implementing an EPaCCS system. To download ‘Lessons Learned’ or to find out more, click here.

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Early Palliative Care Can Lessen Hospital Stays, Improve Well-Being

A study conducted by researchers a the University of Texas MD Anderson Cancer Center has found that early referrals to palliative care lead to fewer hospitalizations, ER visits, intensive-care admissions and hospital deaths.

“Earlier palliative care is generally a good thing. There is more and more evidence to support the need for it, and the benefits that come from it,” says David Hui, M.D., an oncologist at MD Anderson.

To read a detailed synopsis of the study published on—a site produced through the Mesothelioma Center—click here.

A Network for Courageous Parents Offers New Views on Palliative Care

A new site, conceptualized by television producer Blyth Lord, is sharing compelling videos that feature parents of seriously-ill children discussing their trying experiences. Launched in April 2014, the Courageous Parents Network aims to be a video-centric resource for any parent facing this kind of situation.

In the videos, parents talk about a host of topics including their fears and anxieties, and in several cases, detail their decisions to choose palliative care for their children. The video series also features the points-of-view of physicians, therapists and chaplains, among others. To view the site, click here.

Baylor Medical Center Wants To Spread The Word About Palliative Care

An article in HealthCare Daily has put the spotlight on Baylor Healthcare System’s Supportive and Palliative Care program, which was recently awarded the American Hospital Association’s Circle of Life Award as one of the nation’s three best palliative care programs. The story details their growth from a program that saw an average of 450 patients a year between 2004 and 2010 to a program that now treats over 4,200 patients annually. To read the full story, which also focuses on the need for more palliative care training nationally and underlines important research supporting palliative care, click here.

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Disparities in Access To Palliative Care

Otis Brawley and Cardinale Smith say that racial and ethnic disparities in health care in regards to access to care, receipt of care, and quality of care lead to more minority patients being diagnosed with late-stage illness and experiencing increased suffering as a result. This detailed argument can be found this month in Health Affairs, which has been publishing a blog series dedicated to bringing pressing palliative care issues to light.

In the article, Brawley and Smith lay out actionable next steps in bringing these issues to light and addressing the problem. They say change must come soon.

“As the population of minority older adults continues to rapidly increase, many will have to deal with the challenges of serious illness. Ensuring the availability of high quality palliative care that can meet the needs of this population is paramount,” they write. To read the full story, click here.

New APHA Policy: Supporting Public Health’s Role in Addressing Unmet Needs in Serious Illness

The Aging and Public Health Section of the American Public Health Association (APHA) has released a proposed policy, “Supporting Public Health’s Role in Addressing Unmet Needs in Serious Illness and at the End of Life.” This policy addresses the public health problem of the growing suffering and illness burden among older adults and seriously ill individuals who are faced with advanced life-limiting conditions as they age. The contents set the stage for public health’s involvement in supporting appropriate health care delivery for this growing population.

Action Steps are provided for organizations, government, and policy makers. Detailed information about the policy can found by clicking here.

Mindfulness, Listening and Communication: Training for Providers Caring for the Seriously Ill

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Between Friday, October 17 and Saturday, October 18, the NYU Langone Medical Center—a world-class, patient-centered, integrated, academic medical center—is offering training to doctors, care givers and anyone actively involved or concerned with palliative care and decision-making.

This course will teach mindfulness-based palliative care/communication skills to caregivers involved in caring for patients facing serious illness as well as their loved ones. Participants will explore how aspects of the practice of mindfulness can help to develop deep communication skills. To learn more about accreditation, get to know the speakers and see the full list of events, read the course brochure.

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Medicare Experiment Could Signal Sea Change For Hospice

Diane E. Meier, Director of CAPC, recently sat down with Kaiser Health News’ Michelle Andrews to discuss the recently launched pilot initiative that allows willing hospice patients to continue to receive life-prolonging treatment. Dr. Meier also discussed the differences between hospice and palliative care and weighed in on what the future holds for this medical specialty. Click here to read the full story.

CCCC launches national consulting service for Advance Care Planning

The Coalition for Compassionate Care of California (CCCC) has launched a nationwide Advance Care Planning Consulting Service for healthcare providers. The service works with healthcare organizations to design effective, cost-efficient customized Advance Care Planning solutions that result in a quality experience for both patients and healthcare teams. Topics include: program planning and design, customized materials for patients and providers, training and education, and metrics support. Click here to learn more.

Proposed Requirements for Advanced Palliative Care Certification Program

The Joint Commission is proposing changes to the Advanced Palliative Care Certification Program requirements and is seeking input from the field. The Joint Commission staff  has identified areas for enhancement in the requirements, which include: increased focus on care of patient and family; referrals to community resources and hospice providers; assessments by members of the interdisciplinary program team; palliative care for pediatric patients and families; as well as orientation and education for interdisciplinary program team members.  Submit your comments via the online survey, which will take approximately 10-15 minutes to complete.

Click below to listen to a podcast on how The Joint Commission Certification Process works.


Insurers play growing role in palliative care expansion

Health plans covering palliative care are on the rise, according to an article in The Oncology Report. As evidence, the story spotlights Cambia Health Solutions’ recent launch of a wide-reaching palliative care program. In addition to covering palliative care services not previously covered, Cambia is offering training to palliative care specialists as well as primary care physicians on topics such as effective communication skills and making referrals. To read the full story, click here.

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Study: Early Palliative Care Cuts Costs

A new study in Health Services Research finds that palliative care delivered early during hospitalization can help minimize costs for those facing serious illness. The study aimed to guide hospital systems on how best to structure and utilize palliative care teams as well as measure potential cost savings from in-hospital palliative care teams.

The results show that “savings associated with palliative care were highest for patients who had a consult with a palliative care team within the first 10 days of their hospital stay and for patients diagnosed with cancer.” Savings also increased when “a palliative care team included more involvement of physicians and registered nurses.” Click here to read the full study.

AAHPM Launches Survey to Help Shape List of Cross-Cutting Quality Measures for Hospice and Palliative Care

Last fall, the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA) launched Measuring What Matters (MWM), a consensus project aimed at identifying a recommended portfolio of cross-cutting performance measures for all hospice and palliative care programs. AAHPM is now inviting input from stakeholder organizations, including patient advocacy organizations, in an effort to finalize this list of measures.

The current list has been narrowed to 12 published, existing quality metrics. Organizations are now invited to help determine the final list of measures that will be recommended for palliative care programs to use for program improvement. The deadline to complete the survey is August 4, 2014. Click here to access the survey.

This Week in Palliative Care Tweets

Check out what is trending on Twitter this week in the world of palliative care…

Did you see the Palliative Pulse?

The July issue of The Palliative Pulse features a heartwarming story on palliative care patient and advocate, Amy Berman’s palliative care journey; a guest blog by Dr. Sarah Friebert, Director of Akron Children’s Hospital’s Haslinger Family Pediatric Palliative Care Center; and much more. Click here to catch all the stories and don’t forget to subscribe to Palliative in Practice for all your palliative care news, stories and issues.

The Palliative Pulse, July 2014

Palliative Care: We are the Quarterbacks of our Care

Waving from the saddle of a camel. Jet skiing to the Statue of Liberty. Climbing the Great Wall of China.

This is what you’ll find Amy Berman—who was diagnosed with stage IV inflammatory breast cancer in October, 2010—doing these days. Since choosing palliative care and remaining in control of her own medical decisions, Amy says she is enjoying a “full life” of work, travel and quality time with loved ones.

“I did something so simple yet so rarely done. I chose the road less taken, and it led to better health, better care, and significantly lower cost,” said Amy in a recent Health Affairs blog post. Amy is a Senior Program Officer at the John J. Hartford Foundation, a proud mother and a staunch advocate of how palliative care can benefit anyone facing serious illness as well as their families.

This month, CAPC presents Amy’s story, in her own words and images, as a reminder of how palliative care empowers patients and families to match their goals with the care they receive.


Keeping Perspective and Moving Forward

By Sarah Friebert, MD


My Journey to and in palliative care has been a series of steps both small and large (and forward and back), u-turns, roads taken and not, sprints, detours and a voice announcing “recalculating,” but through it all has been a sense of being led into this work in the first place and deeper in as time has gone on.

Over time, it’s easy to lose perspective on how important the work is, because it becomes what we do every day. Every once in a while though, something happens that makes me say, “THIS is why we do what we do.” Sometimes it’s a family’s spoken and unspoken relief at realizing they’re not alone. Sometimes it’s a measurable change in a child’s distressing symptoms because of an intervention we’ve implemented.

Recently, reward has come in the form of breaking through the myths and misconceptions surrounding palliative care and hearing families say, “When I first heard about palliative care, I thought: not for my child, but now I wish I had known about your team long ago.”

Persistence, education and presence are paying off, and if we keep going, access to high-quality palliative care will eventually be the norm for every child and family who could benefit from what we have to offer.

Dr. Friebert is the Director of Akron Children’s Hospital’s Haslinger Family Pediatric Palliative Care Center. Her program was recently featured in an article on pediatric palliative care published in The New Yorker.


 CAPC Membership: Institutions will never have to reinvent the wheel 


CAPC becomes a membership organization in January 2015. With membership, institutions will become part of a vibrant collaborative network of healthcare professionals at the front lines of improving care for the sickest and most complex patients.

One membership fee will cover the cost of training, tools and expert resources for the entire staff of each member institution. Member-only benefits include: clinical and operational CME/CEU online training through multiple platforms; hands-on technical assistance focused on essential best practices and ready-to-use tools and resources; leadership skill-building to increase operational efficiency and effectiveness; virtual office hours with nationally recognized palliative care leaders from all settings; access to CAPC web conferences covering the most important topics in palliative care; discounts to the CAPC National Seminar; and more. For more information, visit or contact CAPC directly to speak to a membership representative today.

Watch a video featuring nationally-recognized experts discussing CAPC’s tradition of excellence.


My Palliative Care Moment

Sharing the inspiring stories of why specialists choose palliative care as a career

This month’s moment comes from Dr. Stephen Berns, Asst. Professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai Hospital. Watch Dr. Berns tell a personal story of when palliative care could have helped his loved ones during a difficult time.

 Want to contribute a story to the Palliative Pulse? Contact


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A Soul Doctor and a Jazz Singer: A Palliative Care Story

“What does a good day look like to you?”

Do enough clinicians ask this question as well as other key questions that help bridge the communication gap between clinicians and patients facing serious illness? Lachlan Forrow, MD, Director of Palliative Care Programs at Beth Deaconess Medical Center, says no.

“We ourselves don’t often have the experience, the practice or the support we need to sit down with the patient as a human being, understand what’s important to them and make sure that that’s always at the center of every medical plan,” said Dr. Forrow in a heartwarming video recently produced by the Conversation Project. In the video, Dr. Forrow described how he asked his patient, Dolly Baker, who was facing a serious illness, what a good day looked like for her. Her response speaks to the essence of palliative care:

“Singing,” answered Dolly. Then, moments later, she proceeded to belt out a moving rendition of “What a Wonderful World.”

“Every time her voice started to sing, you could just see her eyes getting younger, her face getting younger and the human joy returning,” said Dr. Forrow.

While palliative care focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness (whatever the diagnosis), the goal is to improve quality of life for the patient so they can enjoy the things they love most as they deal with the illness. For Dolly, it was to sing like she always had before. Click here to watch the full video.

Palliative Care Heads to the Capital: PQLC Lobby Day

On July 23, over 19 organizations and their advocates are going to Washington D.C. to educate lawmakers on the value and impact of palliative care and to ask for support of quality of life bills. The Patient Quality of Life Coalition (PQLC)—formed to advance the interests of patients and families facing serious illness—put this event together to emphasize the importance of public policy in favor of better access to, education for, and research about palliative care. Follow the happenings before, on and after Lobby Day by using the Twitter hashtag #PQLC.

Upcoming CAPC Web Conference: Aligning Medication Management with Hospice Regulatory Mandates, Part 2

Join Joan Harrold, MD MPH and Mary Lynn McPherson, PharmD MA BCPS CPE, for part 2 of CAPC’s exciting two-part web conference on hospice regulatory mandates. In part 1, participants learned about these mandates and why it is imperative that palliative care and hospice programs present a unified front. In part 2, participants will drill deeper into the specifics of medication management including actionable steps for “passing the torch” from a pharmaceutical perspective. Specific examples of disease- and symptom-based protocols and medication regimen reviews will be presented and discussed. To learn more and to register, click here.


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Family Caregiving and Palliative Care: Closing The Policy Gap

Carol Levine and Carol O’Shaughnessy are putting the spotlight on the family caregivers who provide support for those facing serious illness. In a recent Health Affairs blog post, the two argue that support for family caregivers is not often included in palliative care policy discussions due in part to the lack of public knowledge about the complex roles these caregivers take on. Their call to action is for both the public and policy makers to take notice.

“As palliative care moves ‘upstream,’ that is, earlier in the course of illness, and into the ‘mainstream,’ as part of standard medical care, it is essential to bring family caregivers into the discussion, hear their concerns, and develop meaningful policy responses,” they say in the article.

To read the full story, click here.

Palliative Care Benefits Dementia Patients

Stephen Connor, Senior Fellow at the Worldwide Palliative Care Alliance (WPCA) has recently illustrated the value of palliative care for people with dementia and their families around the world. Stephen gives a history of how palliative care has grown to become a viable option for dementia patients after years of obstacles regarding the perception of this medical practice as well as the disease itself. As the number of dementia patients increases globally along with the aging population however, Stephen says the public is beginning to understand the importance of palliative care.

“Over time the apparent need for palliative care for people with dementia has become more accepted. Surprisingly only recently was it acknowledged that dementia itself is a cause of death (Mitchell et al, 2009),” says Stephen. Click here to read this informative post.

Video: Data Supports Palliative Care

Vital Options International, a not-for-profit cancer communications, support, and advocacy organization with a mission to facilitate a global cancer dialogue, has produced an impactful video featuring doctors throughout the world all answering the same question: Data in advanced cancer shows that palliative care given concurrently with standard anti-cancer treatment, extends life and reduces hospitalizations.  How should this evidence be integrated in oncology care today?

“What research shows is that the concurrent use of these approaches improves peoples quality of life, extends their lives and clearly plays a role in managing their depression, said Kathy Foley, MD, Attending Neurologist at Memorial Sloan Kettering Cancer Center, who is one of the many specialists featured in the video. To watch, click here.

Take Advantage of the free Payer-Provider Toolkit: A reference guide for organizations leading the financing of health care

Thousands have already downloaded this free reference guide and toolkit intended for organizations leading the financing of health care (including commercial insurers, self-funded employers and federal and state government agencies) – and for providers working in shared risk arrangements. The Toolkit, published by CAPC in collaboration with the California HealthCare Foundation and the National Business Group on Health, defines palliative care and demonstrates its importance to improving value in health care; identifies opportunities to integrate palliative care into payer programs and products; highlights case examples from industry leaders demonstrating what payers are already doing to advance palliative care initiatives; provides tools, check lists and action plans to get you started; and much more. Download the toolkit today!

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Registration Now Open for the 2014 CAPC National Seminar


The CAPC National Seminar, being held November 13-15 at the Rosen Centre Hotel in Orlando, FL, offers in-depth content, rich networking opportunities and one-on-one access to expert faculty. Participants can learn from real-world examples of development and sustainability from palliative care programs in all clinical settings. Topics include community-based palliative care, advanced palliative care communications skills, the Catholic Health Ministry’s commitment to palliative care, generalist palliative care training, palliative care in health systems, and accountable care organizations, among others. Participants will also have the opportunity to hear from notable plenary speakers, including Senator William H. Frist, Sister Carol Keehan, DC, RN, MS, Diane E. Meier, MD, Graeme Rocker, MD and David Weissman, MD. Click here for more information or to register now.

Making the Case for how ACOs Can Benefit from the Palliative Care Model

The Advisory Board Counsel has published its second quarter edition of the General Counsel Agenda, a publication written for the hospital and health system in-house counsel audience. In this issue, the case is made for how accountable care organizations (ACOs) can benefit from utilizing palliative care services.

“For good reason, post-acute care generally, and hospice and palliative care particularly, are becoming regarded as important contributors to ACO success in raising quality and bending the health care cost curve,” says author Julian “Bo” Bobbitt, Jr. in the article. To read the full case, click here.

Diane Meier Joins GenConnect to Discuss Palliative Care


GenConnect—an online platform connecting unique visitors with content experts through multimedia—recently interviewed Director of CAPC, Diane E. Meier, MD, to discuss how palliative care can benefit patients dealing with serious illness. In the interview, Dr. Meier explained how palliative care differs from hospice care and how it can be implemented at any stage of an illness. To watch the full video, click here.

2014 Decision Guides Now Available

The Coalition for Compassionate Care of California (CCCC) has released a new tool to assist healthcare professionals who treat seriously-ill patients in talking with patients about their treatment wishes. Decision Guides is an educational series that explains the complex topic of life-sustaining treatments, using consumer-friendly language along with evidence-based information. The Guides were developed with the help and guidance of healthcare professionals, and reflect the latest research on these interventions. Click here to learn more and to purchase Decision Guides.

CAPC Web Conference: Aligning Medication Management with Hospice Regulatory Mandates

Join presenters Joan Harrold, MD MPH, and Mary Lynn McPherson, PharmD MA BCPS CPE, for a two-part web conference beginning July 9. Part 1 of this series will discuss the critical evaluation process of determining utility and futility of medications in order to provide precise pharmacotherapeutic regimens for patients. The presenters will detail how this process will not only assure optimal medication management outcomes for the patient, but will assist hospice providers in meeting regulatory mandates. In part 2, which will be held July 23, participants will drill deeper into the specifics of medication management including actionable steps for “passing the torch” from a pharmaceutical perspective. Specific examples of disease- and symptom-based protocols and medication regimen reviews will be presented and discussed. Click here to register.





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