Friday, November 17, 2017

Palliative Care: Comfort and Hope for People Dealing With Serious Illness


Palliative care, sometimes referred to as “comfort care,” is a specialized approach to the treatment of patients with a serious or life-threatening illness. The National Hospice and Palliative Care Organization has released a new video to help the public understand more about palliative care and the many benefits it can provide. In the video, Michael Sampair talks about his experience with palliative care and being treated by the palliative care medical team at The Elizabeth Hospice in San Diego, California.

The goal of palliative care is to provide relief from the symptoms, pain and stress of serious illness. It is also designed to improve the quality of life of both the patient and the patient’s family caregivers. What sets palliative care apart from hospice is that patients can continue to receive aggressive and curative-focused treatment like chemotherapy, radiation, dialysis and surgery while receiving palliative care. Palliative care brings another layer of support that often is missing in conventional medical care delivery.

“When patients don't have pain under control, it's hard for them to really enjoy life and to live life to the fullest and he was really finding he had a lot of life still to live but he wasn't able to enjoy it or to be fulfilled because of the pain,” says George Delgado, MD, FAAFP, HMDC, and Chief Medical Officer at The Elizabeth Hospice who worked with Michael to get his pain under control and manage his other symptoms which included insomnia and nausea.

Michael’s quality of life improved with proper symptom management and emotional support and he was able to make a trip to Minneapolis to see his family.

In the video, Michael explains that palliative care has helped in many ways. It allowed him to receive care at home versus traveling to the doctor. “People like me, we don't want to be in doctor's offices and hospitals,” he says. “So when they come and they visit you at home, that's special. That’s unexpected.”

acp
Palliative care helped Michael Sampair achieve a better quality of life. 

“The philosophy of palliative care is the same as with hospice –patient-centered care that addresses the medical, psycho-social and spiritual needs of the person and family caregivers,” says NHPCO President and CEO Edo Banach. “Many hospice programs across the country have implemented community-based palliative care programs into the services they offer.” 

To learn more about palliative care, visit momentsoflife.org/palliativecare or download a palliative care listicle that highlights some of the most common questions asked about palliative care.

Thursday, November 9, 2017

Kristallnacht

November 9 is Kristallnacht, the unfortunate anniversary of the anti-Jewish violence that took place Germany on November 9 and 10, 1938.  I had the honor of spending the day with MJHS in New York City. We visited the Museum of Jewish Heritage and discussed the future of hospice and palliative care. I capped the day by meeting with an MJHS Interdisciplinary Team.
While certainly an emotional day, I ride the rails back home feeling good about the state of our field. Good trauma-informed care comes from a place of person-centeredness and understanding. We have so much trauma to care for these days—as we always have—but what gives me great hope is what we have learned as a community about how to deliver interdisciplinary, person-centered care. 

What I saw in the Interdisciplinary Committee room was a rare (for health care) display of real coordinated care, shared among different disciplines, with the patient and loved ones in the middle. This should be the rule, not the exception in health care.

I had never reflected upon—until today—the fact that both of holocaust-survivor grandparents died under hospice care. My grandfather was reserved, wounded on the inside but never sharing.  He died of Alzheimer’s disease.  My grandmother was outgoing, and demanded to visit Auschwitz (which she survived) before she died of cancer. She made it. Both my grandparents experienced incredible trauma, but came out of it in very different ways.  It was not until they were cared for by the hospice interdisciplinary team that anybody really bothered to tend to the full range of needs they each had after living a full life.

So, here’s to hospice. I wish we were not needed, that there was no death or struggle in life. But so long as there is, I could not think of a better system to care for our struggling brothers and sisters. 

Edo

Edo Banach, JD
President and CEO
NHPCO

Monday, November 6, 2017

Thoughts on Recent Tragedy in Texas

A Message from Edo Banach

News broke this weekend of another mass shooting in the U.S.  This time, in the south Texas town of Sutherland Springs. In terms of casualties, it is the worst shooting in the history of Texas. Yet, what makes this even more disturbing is that it took place in a church.  How does one respond to another breaking news story of this kind? As a nation, we have seen such violent acts in California, Colorado, Connecticut, Florida, Nevada, Ohio… tragedies seem too numerous to mention.  

Is it possible to become numb from such tragedies? Do we ever become too weary, too overwhelmed, too disinterested when we learn of such a horrible incident?  I hope we do not.  

T
he shooting this Sunday resonates in a troubling way due to the circumstances of the location – families worshiping together in what is a sacred space. But whether such a tragedy occurs in a school, office, nightclub, concert venue, shopping mall…or a church, synagogue or mosque, we respond in shock, fear, anger or dismay.

As the hospice and palliative care provider community, I know that many of you will be tending to a family who will be experiencing a significant loss today, tomorrow or the next day – that of a loved one under your care in hospice. We are a professional community that deals with death on a daily basis; many providers are skilled at helping communities respond to public tragedies. Yet, we know that not even one single death can ever be considered routine. We know how loss and grief impacts individuals and the broader community. In some ways, it is this deeper understanding of loss that allows us to recognize and identify with those who grieve, for whatever reason. And our reactions to events such as Sunday’s shooting can affect us in different ways – but never indifference.

I think a significant part of the work we do with patients and families involves the skill of listening...listening to people sharing fear, sadness and love for what is lost or changing. As we respond to news of this weekend’s tragedy, let us remember the importance of listening with a compassionate ear to our families, our coworkers, our neighbors and those strangers whose lives we intersect.  Let us hold onto the compassion and caring that grounds us so strongly in our professional lives and may sustain us in our personal lives. Let us be ennobled by the strength we have and that we share with others and let us not be embittered.

 Let us also remember, and remind others, that we are often called upon to do much more than to care for hospice patients.  Our value runs deep in the communities we serve, and we are needed more than ever.  


Thank you for the work that you do. 


Edo

Edo Banach, JD
President and CEO

Wednesday, November 1, 2017

November is National Hospice and Palliative Care Month


NHPCO Leading Outreach Efforts throughout November to Help People Understand that “It’s about how you live!”
This month, the National Hospice and Palliative Care Organization is working with hundreds of hospice programs across the country to raise awareness about hospice and palliative care.  November is National Hospice and Palliative Care Month and this year’s theme is “It’s about how you live!” 

Hospice is not a place, but rather a model of high-quality care that enables patients and families to focus on living as fully as possible despite a life-limiting illness. Palliative care brings this holistic model of care to people earlier in the course of a serious illness. Hospice organizations are among the largest providers of community-based palliative care services in the nation.

“Every year, nearly 1.5 million people living with a life-limiting illness receive care from hospices in this country,” said Edo Banach, president and CEO of the National Hospice and Palliative Care Organization. “These highly-trained professionals ensure that patients and families find dignity, respect, and love during one of life’s most difficult journeys – it’s really about living.”

Hospice and palliative care programs provide pain management, symptom control, psychosocial support, and spiritual care to patients and their families when a cure is not possible.

As part of national outreach efforts, NHPCO is sponsoring a hospice and palliative care Social Media Push on Friday, November 3. This annual event was created to share positive and informational messages about end-of-life care via social media. All supporters and advocates are encouraged to participate using the hashtag #hospiceawareness.

"One of the most common regrets we hear from hospice patients and their families is that they delayed the decision to take advantage of hospice care,” noted Banach.

To learn more about hospice, palliative care, advance care planning, or to find a hospice provider in your community, visit NHPCO’s CaringInfo.org.

 

Monday, October 30, 2017

Music Therapy Helps Hospice Patients and Families

The National Hospice and Palliative Care Organization has released a new video that highlights the use of music therapy in hospice care. “Mr. Gregg: the Life of the Party” follows Robert Gregg, a Seasons Hospice and Palliative Care patient, suffering from memory loss and agitation due to advanced illness. Music therapy has helped restore some of the lighter and more cheerful aspects of Mr. Gregg’s personality and has been a positive addition to his care.

Music therapy was introduced into Mr. Gregg’s care after a hospice aide realized he was responding positively to the songs she would sing to him. Sara Harris, Board Certified Music Therapist at Seasons Hospice and Palliative Care, was brought in to Mr. Gregg’s home to provide music therapy sessions. She offers a reassuring tempo that allows Mr. Gregg to adjust his breathing to sustain both happiness and peace. In the video, Mr. Gregg sings along with Sara, claps his hands, and has a broad smile on his face.   

Jackie Gregg, Mr. Gregg’s wife, was unsure at first how music therapy would help him. But once Sara started playing her guitar, she noticed Mr. Gregg moving his shoulders and toes. He seemed very happy.

Music bridges a gap between their reality and our reality,” says Harris. “And for families who may have not seen their loved ones speak or sing or anything the past few years, it’s just absolutely priceless."

"As a musician, I believe in the power of music to transcend words and connect people,” says NHPCO President and CEO Edo Banach. “Music therapists help provide physical and emotional peace to patients and families at the end of life."

Mr. Gregg’s video is part of the Moments of Life: Made Possible by Hospice public awareness campaign launched by the National Hospice and Palliative Care Organization in 2014. The campaign features stories from hospices and palliative care programs across the United States of patients and families experiencing hospice and palliative care first hand. Moments of Life was created to help people understand that hospice and palliative care help patients and family caregivers live as fully as possible despite serious and life-limiting illness. Visit MomentsOfLife.org to learn more.
Mr. Gregg - the life of the party.


 

Tuesday, October 24, 2017

The Many Reasons That I Celebrate Front-line Caregivers

by Katherine Murray, RN, BSN, CHPCN(C).
Shared courtesy of Life & Death Matters Blog.

October is the month to celebrate personal support workersin several provinces in Canada. In the US, the contributions of hospice aides and certified nursing assistants are celebrated in November.

At Life and Death Matters, we join with health care teams and members of the public across North America to celebrate and give thanks to the incredible people who serve in these caregiving roles. I would like to take a few moments to talk about the many reasons to celebrate front-line health care workers.

I have interviewed hospice aides over the past month as I prepare for an NHPCO webinar series for hospice aides. Several interviews had to be postponed as the hospice aides evacuated people before Hurricane Irma hit Florida, or when wildfires spread in California. Another time the call needed to be rescheduled because the hospice aide was working in a remote area without cell phone reception. In the interviews I repeatedly heard stories of connections between the hospice aide and the person and family, stories of caring, stories about letters written by bereaved family members that expressed gratitude for the personalized support, and the ability of the hospice aide to adapt care to best meet the needs of the person and the family. These examples reinforce for me that front-line caregivers are pillars of support that the person, family, and health care team can depend upon.

I wrote a blog post about a study of the experiences of front-line caregivers in Ireland. I was delighted to hear stories that showcased similar experiences of hospice aides in the USA. Hospice aides, in their rather straightforward manner, shared a few stories and examples of how they work with the person and with the team. For example, I’ve heard repeatedly about a time when a hospice aide shared their concern about a person they were assigned to. How they formulated a report that shared their observations, the questions they asked, and then called the nurse supervisor. In each case, the nurse responded in a short period of time, and followed up on the hospice aide’s concerns by contacting the appropriate member of the team. In one case, the nurse called the physician to report pain and request an increase in pain medication. The nurse supervisor also visited the person when necessary.

"In each story, the hospice aide initiated changes in care,
and then adapted their care to best meet the needs of the person."

These stories and reports of events impressed me.

In the past weeks I have talked with several directors of care and nurse leaders at hospice organizations in California. In each hospice, the hospice aides were invited and contributed to interdisciplinary team meetings, and participated in education. For some hospices, the meetings occurred by teleconference, with members of smaller teams meeting at set times each week. For other hospices, the ENTIRE team gathered in one room, where deaths were reviewed, “what went well” was discussed, thank-you cards were read, cases were reviewed and care plans updated, and attendees were educated in the moment. I was impressed! The hospice aides participated alongside the physician, nurses, social workers, counselors, and therapists. These front-line caregivers are valued for their commitment, their caregiving, and are fully accepted members of the health care team.

Following this meeting I interviewed two hospice aides. In one interview, Terry, who previously worked with oil pipelines as well as other physically demanding jobs, shared with me about coming to hospice later in life. It is her quote that appears at the beginning of this posting,

"Singers sing, painters paint, and I am a hospice aide and I care.
I love it. It is what I do… It is what I have to do."

To all those front-line health care workers, whatever your title, THANK YOU for caring. Thank you for the work you do. You are incredible! Your work is valuable.

Thank you. 


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 Learn more about NHPCO's educational program, the Hospice Aide Webinar Series, taught by Katherine Murray, RN, BSN, CHPCN(C). The series features three webinars offering the first three Wednesdays in November and includes MP4s and resources for your library. This is a cost-effect way to offer professional development created especially for hospice aides.

Monday, October 23, 2017

CMS Recruiting for Hospice Quality HEART Tool Pilot

CMS has contracted with RTI International to develop the Hospice Evaluation & Assessment Reporting Tool (HEART), an expanded item set covering the comprehensive patient assessment for hospice providers.  As part of the HEART development process, RTI will be pilot testing the draft HEART instrument by conducting two sequential pilot tests.  

RTI is currently accepting applications to participate in the pilot test for HEART
The deadline for applications is October 31, 2017.

How to apply to participate in the pilot:

If you are interested in participating, please complete the pilot interest form located in the download section of the HQRP Requirements and Best Practices tab on the HQRP website and email it to hospice@rti.org by October 31, 2017. The project team will contact you to further discuss the pilot project. If you have questions about the pilot, please contact Jennifer Tierney Lyden at 919-541-7447 or at jlyden@rti.org.