A gift to those you love: this Thanksgiving talk about the care you would want

NHPCO is encouraging families to spend time when they may be gathered for the holidays, to talk about the care they would or would not want. This is particularly important if a family is coping with a serious or life-limiting illness of a loved one. Having discussions about one’s health care wishes is part of advance care planning.

Advance care planning involves making decisions about the care you would want to receive in a medical crisis that might be the result of a serious illness or an unexpected accident. Advance care planning also involves deciding who will speak for you if you are not able to speak for yourself.

An essential part of advance care planning involves having these important conversations with your loved ones. Advance care planning also includes:

• Deciding what types of treatment you would or would not want should you be diagnosed with a life-limiting illness or faced with a serious medical crisis.
• Sharing your personal values and beliefs with your loved ones.
•  Completing an advance directive to put into writing what types of treatment you would or would not want.
• Designating a person as your health care power of attorney (sometimes called a health care proxy) to speak for you if you cannot speak for yourself.

“During the holiday season, families are often gathered together and that can be an ideal time to have caring conversations with loved ones about wishes and priorities for the future," said Edo Banach, NHPCO president and CEO. "This is one of the most important gifts we can give to our families and loved ones."

NHPCO’s CaringInfo.org offers free state-specific advance directive forms and free information to help families talk about the care they would want. Visit caringinfo.org/planningahead.

NHPCO offers a video that looks at issues involved in advance care planning.

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.”

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.

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

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.  

The 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

National Hospice and Palliative Care Organization

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.