Why a Film about Palliative Care and Hospice?

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The documentary I am producing is my way of giving back the gift I received during the single most painful period of my life.  When my wife Donna was diagnosed with Stage IV non-small cell lung cancer and given six months to live, I knew this story would not have a happy ending.  Yet the compassionate approach of our palliative care and hospice teams helped us to discover a path beyond the end of life.  This care helped me to focus on Donna—not her passing.

Our oncologist provided palliative care for Donna right from the start.  The medical specialty that takes as its goal providing relief and managing suffering, palliative care is appropriate for any stage of illness—unlike hospice, which is only for end-of-life care.   Our health care team provided us nearly three years of good quality of life, unmarred by horrific treatments and side effects.

Donna continued receiving this outstanding level of care in hospice from the amazing clinicians and support staff. Their first task was to provide expert clinical care to Donna, which of course was a major reassurance to me. But at the same time, I became a secondary focus of their care. They reached out to me directly both during Donna’s time in hospice and afterwards. So as a caregiver and spouse, I was an integral part of Donna's treatment plan. 

Palliative care improves quality of life for the patient as well as for the caregiver. So on some level, I received palliative care, too. That’s part of its magic. It’s cares for the whole patient—body, mind, and even loved ones.  Our team knew from experience that the spouse and family members suffer as much if not more than the patient—and for longer.  I am still not out of the wood, emotionally speaking, but I choose to live every emotion associated with her diagnosis and death to its fullest.  I will go through and not around these feelings, and hope to find understanding by engaging in this painful work.

As I look back on my wife’s illness and death, I can see how palliative care and hospice gave us the beautiful gift of life, peace, and time. Because of this approach, I was able to celebrate who she was and the love we shared, rather than concentrate on her death. Her passing was about what we had, not what was lost.

Unfortunately, many patients and families suffer needlessly without palliative care and hospice.  Patients may not be knowledgeable about these types of care and the advantages they offer.  They and their family members may have difficulty discussing treatment options with each other and with health care professionals.  Physicians may equate palliative care and hospice, and therefore not develop palliative care teams early enough.  

Both patients and health care professionals need more information. That’s why the goal of my film is to:

• Provide patients and family timely and accurate information regarding palliation and hospice care, and what this care means to their quality of life.
• Address patient concerns and questions about palliative care and end-of-life care.
• Demonstrate the benefits of palliative care and hospice.
• Facilitate discussion among patients, family and health care professionals about palliative care and hospice.

We will succeed if we can have an impact on these issues.

This film will equip patients and families to make the best choices while residing in the greatest of all darknesses. It is about the precious gift of time, quality, and the chance to focus on “today.”  By making this film, I hope to give back what I received through palliative care and hospice.  With your help, we can eradicate the fear and misunderstandings so that more people can share this gift of comfort and peace.

Communications Goals

Our goal is to support decision-making during serious illness by opening key dialogues among:  

• Patients and family members.
• Patients and health care professionals.
• Family and health care professional.

The documentary will aid this discussion by demonstrating the benefits of palliative care and hospice. We want to make it easy and productive to discuss palliative care, end-of-life, and hospice. Doing so will not only improve care but also enhance quality of life.

Because our goal is to share knowledge and give people the tools to make informed decisions for themselves and their families, we will make the film available at no cost to individuals, health care professionals, groups, hospices, hospitals, support groups, and anyone with an interest in this topic.

We hope it will be used as an educational tool to foster discussion and learning. We also will promote it to be used in physician education programs to enable this key segment the opportunity to see first-hand the true value of palliation and hospice, and their great contribution to patient care. 

Our Financial Goal

We have a modest goal of $35,000. This money will be used to make a 15-minute documentary.   

The Film’s Approach

Our film will tell the story of palliative care and hospice, and what this care means for those who have received them.  We will feature:

• Information about the goals of and options provided by palliative care and hospice care.
• Discussions with those who have received palliative care and hospice care, and their family members, to learn firsthand how palliative care and the lack of it impacted them. 
• The stories of those who did not receive this level of care. In this way, we will show the difference between those who benefited and those who suffered unnecessarily.

Our format is designed to engage viewers and draw them into the discussion about treatment options.

The Team

I am very proud to have a highly regarded award-winning team in place to produce this documentary. 

• Leszek Burzynski, Producer/Director. We are thrilled to have Leszek Burzynski produce and direct this film. He co-founded The Winning Team (TWT), a film and television production company, with five-time Emmy Award-winning producer Terrance Sweeney. Their first feature film together, Bhopal: A Prayer for Rain, began shooting in India in 2008, and starred Martin Sheen, Kal Penn and Mischa Barton. In his capacity as Executive Producer, Leszek spent several weeks on the set in Hyderabad with first-time Writer/Director Ravi Kumar. The film is presently in post-production in London.

Previously, Leszek produced Love and Action in Chicago for Prosperity Pictures, starring Courtney Vance, Regina King, Kathleen Turner, Jason Alexander and Ed Asner. Selected for multiple film festivals, including Toronto and Hawaii, the film continues in rotation on HBO. Leszek also wrote and directed Trucking and directed Cry Wolf, both released by Paramount Pictures. He co-wrote and directed Trapped Alive, and co-wrote, produced and co-directed the cult horror classic Blood Harvest. For Flashpoint Ltd., Leszek was Supervising Producer of Eighteen Shades of Dust, with Danny Aiello and William Forsythe, Kiss Toledo Goodbye, with Christopher Walken and Michael Rappaport, and Just Sue Me with Tom Arnold and William MacNamara.

• Terrance Sweeney, Producer. Five-time Emmy Award-winner Terrance Sweeney will also produce this film. Terry is convinced of the persuasive power of mass media to effect positive change in human attitudes and culture, and has written, produced, and consulted on more than eighty films and television programs.  His extensive production experience, combined with an exceptional educational background—a Bachelor of Arts Degree from Gonzaga University, a Master of Arts Degree from Loyola Marymount University, and a Ph.D. in Theology and the Arts from the Graduate Theological Union in Berkeley—has made him a valued executive consultant to Warner Bros., 20th Century Fox, Columbia Pictures, Universal, Paramount, and the television networks on many movies and series, including The Thorn Birds, The Mission, and The Day Christ Died. 

Terry’s first Emmy was awarded for Streets of Anger, Streets of Hope, a one-hour documentary he wrote and produced about Chicano streets gangs in East Los Angeles when residents there suffered the highest ratio of gang-related homicides in the nation. He won three more Emmys for producing the nationally syndicated series Insight.  This half-hour anthology series included both comedy and drama formats, and with the talented help of Hollywood’s best writers, directors, and actors, enacted inspirational stories that explored contemporary moral and social dilemmas.

• Betsy Trapasso, MSW, Consultant. Lending her clinical expertise to the project is Betsy Trapasso. Over the course of her career, Betsy has counseled and assisted people from many different backgrounds. Her professional qualifications include a Masters in Social Work from the University of Southern California and a BA in Psychology from Fairfield University in Connecticut.

In 1994, Betsy made a shift into the area that would become a lifelong passion and full-time commitment when she joined Olsten Kimberly Qualitycare Hospice in Los Angeles as a social worker. Here she counseled hundreds of terminally ill patients and their loved ones, in the process discovering her true calling.

In fact, Betsy had grown up with a grandfather, John Sliney, who, along with Florence Wald of Yale University, was instrumental in bringing hospice from England to Branford, Connecticut, where the first hospice in the United States was established in 1974.  Betsy would attend hospice meetings with him as a child, and she never forgot his dedication to the task. Like her grandfather before her, Betsy became an advocate for end-of-life issues, wanting to change how we view and respond to death in the United States.

As an end-of-life guide, Betsy works with the dying and their families to assist them through the dying process. She brings them a unique sense of peace, while dealing with personal, spiritual and practical issues.

What You Can Do

Support Our Project. Donations in any amount are crucial to our project.  I welcome your contributions to bring this critical message to a broad audience of caregivers, patients, and health care professionals. 

Spread the Word. I also ask you to spread the word and the link to this site. 

• The best way to let people know about our campaign is to email your entire network our link directly.
• Contact your friends, family, neighbors, co-workers, and anyone else who might have an interest in or firsthand knowledge of dealing with serious illness and end-of-life issues.
• Include a short, personal note encouraging them to get involved with us.
• Post our link on your Facebook page, website, blog or twitter.
• Approach organizations to ask if you (or they) can send out an email to their members about this opportunity.  Ask them to join our community, and refer them to this site.

Thank you for your generous support.

And a special thank you to Johnathon Heninger for all his work in shooting the video above. http://johntownpro.smugmug.com

A big thank you to Mari Renwick for the art. Mari is a wonderful and talented artist you can view her work athttp://renwickstudio.com/ILLUSTRATION/HOME.html/ And we can’t forget Kevin Cox for the type and design. Thank you both!

Key Facts: Palliative and Hospice Care

There has been a gradual shift in palliative care. The older model’s primary goal was to prolong life for as long as possible and only make an abrupt switch to hospice at the very end of life. The newer approach to palliation starts with life-prolonging care and incrementally adds palliative care to the equation, including hospice and bereavement care for the family and caregivers. Without sacrificing life-prolonging care, it also supports quality of life.  In this newer model, the palliative care teams manage three critical areas:

• Physical, emotional and spiritual issues.
• Patient and family, as well as professional discussions about achievable goals for care and decision-making.
• Coordinated care and support for the practical needs of both patients and families.

Palliation and hospice care improves quality and length of life, reduces depression, and improves family satisfaction and well-being. At the same time it reduces costs for the sickest 5–10% of Medicare and Medicaid beneficiaries. There is actually an inverse association between cost and quality of death. In other words, the more money spent the lower the quality it buys.

Late referral to palliative care has serious adverse outcomes for bereaved caregivers. Care in the Intensive Care Unit has five times the family risk of PTSD and greater than eight times the family risk of prolonged grief disorder. 

Early palliative care also offers significant advantages to patients.  In one study,  patients with non-small-cell lung cancer receiving palliative care from diagnosis were compared to a control group receiving standard care only. The study found the following benefits with the combined standard/palliative care model:

• Improved quality of life.
• Reduced major depression.
• Less chemotherapy 14 days before death and greater likelihood of getting hospice, which meant they were less likely to hospitalized in the last month.
• Improved survival (11.6 months vs. 8.9 months)

I would like to thank Diane E. Meier, MD, FACP, Director of the Center to Advance Palliative Care at the Mount Sinai School of Medicine, for both her research and The Center to Advance Palliative Care’s research, which I use above.